One Dad's Opinion

A Bit Rusty, Very Proud

2011-02-02T20:41:00.000-08:00

Oh my gosh. Oh my, oh my. It appears that it has been about one year, 5 months, and 5 days since I last wrote here at One Dad's Opinion. Pardon me a moment while I stretch and yawn...

Ahhh, much better. And now, back to it.

You may wonder why I have chosen this moment to return to One Dad's Opinion. The reason is simple - I want to share a story with the one group who is most likely to appreciate its value. A group who I admire and feel a part of to this very day, despite the fact that I have been a dusty old member of the archives for well over a year now. Heck, some of y'all might not even know me at this point, might not know that I was part of a great team that represented the Autism Hub on several different occasions at the highly respected University of San Diego Autism Insititute.

I relented from my blogging for a long time. Partly it was because the constant controversy and attack/defense made me feel a bit mean. Partly because my real life demanded more attention than I could provide in any given 24-hour period. And mostly, mostly because my favorite topic of conversation at the time - my son J - had matured to an age that I no longer felt like I could write about him without his consent. Big, ethical issue that I decided must go in favor of least possible harm and most possible respect. So I quit. And here I am back again. And now you will see why.

Following is an excerpt from the blog of a very dear friend of mine and my family's. Someone I know and respect very much:

MONDAY, JANUARY 10, 2011

some words to chew on

Today I wore this to work out...

Except half way to gym, which is 30 minutes away, I decided that the lil' guy in the back was hacking to much to bring him to the kids' club.

No work out for mama: Bummer.

Sick kiddo: Bigger Bummer.

Solution: Do Zumba on the wii at my friend's house after I tutored her third grade son.

Simple enough, right?

Well, clearly not so much.

Her son has autism.

Just like my Luke.

And no they are not like Rainman (written with a smile).

Autism is a spectrum of behaviors that range from very mild to very severe.

My friend's son saw my shirt and asked me one of the most difficult questions I have ever had to answer in my life.

"Why would they want to take down autism?"

For him and all the others with autism, finding a "cure" doesn't make sense. They are quite content being who the are. They don't need to be changed.

They need acceptance.

So I explained to him that autism makes his brain see things differently from others in the world and that it makes him extra special.

I also explained that each one of us has traits that are different from others. We each have talents and we each have weaknesses.

Autism or not.

I spent the 1st few years of Luke's diagnosis desperately trying to cure him. Shame on me.

Having Asperger's (mild form of autism) gives him incredible talents. Why would I want to cure that?

Instead I want to spend my energy fighting to make the world know that different is okay.

As my friend's son so simply asked, "Isn't autism part of my personality?" He couldn't understand why I'd wear a shirt that wanted to take down who he is. This is a 9 year old.Amazing.

Instead of taking down autism, I want to take down discrimination. I want my friend's son, our Luke, and all the other spectrum kiddos to know that they are loved and accepted forwho they are.

We don't want to change Luke and we certainly don't want to take down his autism. After all, we don't want to take down Luke. We don't want to take down his amazing talents and perspective. He was put together and perfectly made. We don't doubt that for a minute.

The power of words is mind blowing. And the insight and question from an introspective 9 year old, made me think harder than I have had to for a long time.

I hope you think about it too.

Much love,

Perhaps I lack the flair of a Hollywood screenwriter in creating tenuous drama, but can you guess who the 9-year old boy is in her story? Yes, it's J, my son. I am so freakin' proud of that kid I could burst. It's not like I have sat down with J and expounded on the social model of disability ... the kid has never even heard the word Neurodiversity. Can't you see? J's comments simply make me proud of his intent to carve out his own indivuduality. That's it. I'm damn proud of him and I'm absolutely thrilled that this amazing kid counts me as a member of his team.

I'm not so sure that this Dad has the gumption to return to blogging. But I'll tell you this - while J's assertions (and my friend's resulting change in worldview) are most definitely not a result of any tangible outcome that has been created by the years and volumes and transcendent quality of those of us who have participated in the combined output of the Autism Hub, they sure as hell stand as evidence that our message rings sound and true.

Peg Board

2009-08-27T11:58:00.000-07:00

Hello readers!

I am very pleased today to offer you One Dad's Opinion's second-ever guest-blogger piece!

This piece was written by my friend Diana Pastora Carson of Ability Awareness. Diana's brother, Joaquin, is autistic. Currently, Diana and her family are actively pursuing the important process of transitioning Joaquin from institutional care to his own home, and addressing all of the community involvement pieces that go along with that.

This essay was written after one of many appointments that are part of that process, an appointment that occurred yesterday. This piece is also to be included as a chapter in Diana and Joaquin's upcoming book, "A Walk With Joaquin".

***

A Walk with Joaquin
By Diana Pastora Carson

Peg Board

I watched under emotional anesthesia as the teacher pulled out a bright, foam peg board and asked Joaquin to show us how well he can work.

Peg Board. Really? You mean we’ve come 100 miles for this momentous occasion, the first official visit from Joaquin’s community support staff (the people who are going to take him away from all this madness and facilitate him having a real life, one with meaningful experiences, choices, and enjoyment) only to walk into a noisy, windowless room where a good-hearted, but clueless “psych tech” actually boasts of Joaquin’s ability to put large, colored, plastic pegs into a peg board for no apparent reason other than to seem productive and to be compliant?

In this second millennium, the absurd and unbelievable scenario where a professional in the most highly funded state agency working with people with developmental disabilities offers a peg board to my brother, a 40-year-old man who loves walking, riding bikes, and socializing…not peg boards, defies all reason. In what seemed to be slow motion horror, I watched, and even encouraged Joaquin to sit down and try, knowing he would understand what I was doing and would forgive me as soon as we had humored his instructor. I just wanted to get it over with and show a cooperative spirit so we could get the hell out of there.

The poetic ending of this story is that Joaquin refused to perform the task. He sat down at the table in front of the peg board, wrinkled his nose and looked at us as if to say, “You’re kidding, right?” and then put his hand on his head as if fighting off a headache. When prodded, he shook his head, clearly communicating that this was not his idea of fun…or life. “Okay, Joaquin. You’re telling us that you don’t want to do this. It’s okay,” I assured him. It was actually great!

But what if he HAD done it? Would it have meant that he was content? Or that he had finally grown to be compliant after endless years of “treatment.” Would it have meant that he wanted to live in an institution? Or would it have meant that he knew no alternative?

But he had not complied. Did Joaquin know that his act of committed defiance was the perfect metaphorical statement of empowerment? Did he understand that he was actually saying, “I am my own person and I want to live my own life?” Did he know the implications of his action? In my mind, he understood, and he’s a badass genius.

Diana and Joaquin

Quintessential Summer Day

2009-08-01T19:25:00.000-07:00

Wow - we had a lively day around here today!

Firstly, two of our boys - J and C - rode horses in the REINS "Fun Day" Horse Show. REINS is where people with disabilities are able to ride horses in a supportive environment. I've written a lot here on One Dad's Opinion about REINS, as it represents one of the gravitational centers of our family's community involvement and deserves much mention.

This was J's fourth time riding in the "Fun Day" contest and C's first. It's called "Fun Day", but the annual event that precedes REINS' monthly summer break in August groups the students together by skill level and judges their riding performance against each other. Its all in good fun, and creates a tremendous sense of pride amongst the students (ranging from the youngest - Baby C, at 2 years old - up to riders in their elderly years). See this post for a look at their oldest rider, Millie. She is 93 years old. Wow.

Of our boys, C was the first rider of the day. He acquitted himself marvellously well, and brightened his own day and the rest of our days as well with his bright smiles and obvious

affection for his horse and instructor.

He was particularly impressive when completing the "Round the World" move that he always looks forward to. (Spare me the "Horse's *ss" jokes please...)

C won the pink 5th place ribbon - we couldn't be more proud of him!.

After C dismounted and we gathered around him to share the moment, J pointed to the ribbon pinned on C's chest and gave C a little nudge and said, "Congratulations". Both Kaitlyn (the wonderful instructor for both our boys) and me overheard this and commented to Jason how nice it was for him to say that. He very matter-of-factly replied "I was reading his ribbon actually." All-righty.

One could almost imagine C riding off into the sunset like John Wayne...

So after a while waiting in the heat and dust, it was finally J's turn to ride with his group of 6. This was a particularly exciting competition for J, since it would be the first time he would ride independently, without Kaitlyn holding the horse's lead. He mounted up on trusty old Betsy, who he has been riding since day 1, and prepared for his turn.

In a word: Success!

J completed the entire dressage routine without any assistance from Kaitlyn.

Note in this picture the separation between J/Betsy and Kaitlyn - this is an independent performance. Oh, and that look on J's face? Nervous self-satisfaction.

J's excitement-meter was running very low today, so it is difficult to know how he felt upon completing his routine. But when the ribbons were presented, all that changed. J won first place and received a BLUE ribbon! This is dually awesome as blue is J's favorite color - a preference that borders on obsession and influences a large array of J's decisions in life. Blue rules J, and so you can imagine his elation at receiving the Blue Ribbon.

One Dad even got to share the moment with him and Betsy. What a great moment.

After 3 hours of tramping around in the dusty, hot environs at REINS, what better way to cool down than a swim in the pool?

NOT SO FAST! Today, our pool had in interloper that had to be addressed before we could go in. I bet you didn't know this post would include - Tarantula pictures!

I realize it is difficult to grasp scale in a small internet picture, but this spider's body was about 3.5 inches long, with a full leg-span of around 6 inches. Here he is walking along the edg

e of the pool-skimmer I used to retrieve him from the water.

Once we moved our hairy friend to a more spider-friendly neighborhood - ya know, somewhere other than our freakin' pool - we dove in to escape the summer heat. One Mom and I are pleasantly surprised by C's progress in branching out his experiential tolerances. But remember - autism consists of developmental delay, not developmental stasis - so it should be no surprise that C is jumping in the pool now all by himself and generally having a rip-roaring time trying to keep up with his older brothers.

That includes being thrown into the pool.

Hey, give me a big sloppy dog and a smilin' 2-year old "chunky monkey" and I'm One Happy Dad.

I hope you are all having a great summer like we are - and that you are not finding Tarantulas in your pool or anywhere else.

Next week ... Surf Camp!!!

Awkward Moments ... are okay

2009-07-28T20:57:00.000-07:00

After Tae Kwan Do class today - a sport in which both J (age 7) and T (age 6) have achieved their "Camo belt" status (which bugs me - I am a military history aficionado, and I'm making an educated guess that "camo" was not one of the color choices made by the originators of Tae Kwan Do). T was snapping his side kicks and giggling during stretching as always, but J was clearly dragging tail throughout the session. Physical fatigue did not seem to be an issue - his heart just wasn't in it today. S'ok - kids are allowed to "check out" sometimes in This Dad's Opinion. I'm not raising a Commando force, just a few kids.

Moving to the point - after class I took the boys to Baskin Robbins. Baskin Robbins throws J a little off his game since they advertise 31 flavors but sell 42 flavors. I have to agree with J that the universe is slightly askance due to this unsettling factoid (a factoid that is rediscovered immediately upon every visit as J re-counts the flavor labels to make sure they still offer the ridiculous sum of 42 flavors). But this time, on today's visit, there was no re-count. J was thrown a curve-ball immediately upon entering the door. You see, someone said, "Hi, J".

J froze in place, clearly torn between counting the flavors and becoming invisible. He grabbed me around the thighs with both arms, looked up with an obvious and unabated look of bewilderment in his big eyes, and whisper-shouted, "I don't know who that is."

(Aside: I must define the whisper-shout. This is J's verbal channel that he deploys when he is trying to speak 'under his breath'. The thing is, J doesn't modulate that very well and ends up over-compensating his voice volume to make up for the whisper-effect that prevents a voice from carrying distance. So he winds up with a very loud, throaty whisper-shout that he honestly believes is only heard by the person he is oriented towards at that exact moment.)

The boy who accosted J (well, actually he only said 'hi') was sitting with, presumably, his Dad and older brother. The boy was probably 9 or 10, the brother probably 18. All in all, and leaving out some of the "small talk" that surrounded this fragmented interaction, they were a perfectly friendly bunch.

I peeled J off my leg and encouraged him to pick a flavor. He picked chocolate (no surprise there - read this post I wrote back in 2007 to see the consistency of J's taste for chocolate) and went to his favorite position of flipping through the B-R catalog to hone in on his favorite characters represented in the fashion-forward genre of frozen ice cream cakes. At one point he moved closer to the table with the boy who had said 'hi', and the same boy leaned over and said, 'J - you remember me! From Vacation Bible School!" (VBS was last week - not a long time ago) J grabbed my hand and whisper-shouted to me "I think I can't remember him. I think he has different clothes!" Once I had paid up, I walked over to him and crouched down to have a "man-to-man" talk.

I said, "J - on the way out of here, I want you to walk up to the boy who said 'Hi'. I think you should tell him you are sorry you don't remember him, and thank him for saying hello. The reason I think you should do this is because it is the polite thing to do. Do you agree?"

"Yes, Dad, I will."

So we walked over to the door and the boy. Jason grabbed on to me tight and whisper-shouted (the boy could definitely hear, as could everyone else around) "I'm scared!" I told him he would do fine, and we could just leave if he wanted to but that he should try to be polite. "But I'm nervous!"

We stopped in front of the boy. J looked at his feet and whispered - not whisper-shouted, whispered - "I'msorryIdidn'trememberyouthankyouforsayinghello" and we left. The boy was responding, but we left in a hurry. As we crossed the parking lot, I asked J if he felt like what he did was the right thing. "Yes". I asked if he felt better to have done it, even though it was hard to do. "Please don't ask me about that right now!" was his reply. Okay.

Redefining the "Happy Camper"

2009-07-18T19:52:00.001-07:00

I am a very poor blogger these days. Blogging requires somewhat of a repetitive tempo, and my internal blogging metronome has seemingly ground to a halt. This despite a veritable wealth of fascinating goings-on in the microcosm of our family, and in the macrocosm of the autism community. I feel like opportunity after opportunity to write some thoughts on things like the IACC, like the new movie Adam, like the shutting down of fraudulent autism cure peddlers "Care Clinics", like some new and fascinating research and how people are incorporating its results, like so many other things.

So why today? Well, I've been shamed into it. First, I notice that my friend Do'C has posted a new blog entry over at Autism Street. Next I notice that my friend Bev has done the same over at Asperger Square 8. The three of us make up the triumvirate that has spoken several times to large audiences about blogging and autism, but here at One Dad's Opinion there was just the sound of crickets chirping. Then, I log on to the good ol' Autism Hub and see a post by Sharon in which she names little ol' me as a guy who writes things about autism that she likes to read. Okay, so when called out by "Best Family Blog in Ireland", one tends to want to respond.

So on to the point of this post, which is to describe a recent camping trip. Here in our neck of the woods, we hang out with a group of 4 or 5 families on a regular basis. When we all converge, as we recently did at a campground surrounding a few lakes here in SoCal last weekend, the tally comes to 10 adults, 13 kids. 23 of us (one family was absent this time due to a new baby arriving a few weeks ago). Of the 13 kids, 5 have been diagnosed on the autism spectrum. If you want to see a classic, moving, changing representation of the topographical model of understanding the autism spectrum, join us for a weekend sometime!

This group, I'd like to mention, is NOT a support group. This is a group of families who enjoy spending time together, no matter anyone's specific circumstances. We are also a heterogenous group in terms of our views of autism etiology and treatment, and it matters not one whit.

So how, with this many different people of different ages and interests and, yes, neurological profiles, does one ensure that everyone is a "Happy Camper". Easy answer: One simply cannot. But one can describe several circumstances of Happy Campers, as well as some simple and general observations, so here goes:

In the campground's pool, my son J was doing his typical pool routine after playing with friends for a while. He will break away from the group and just kind of "be" in the water. This consists of swirling around, inverting himself, periodically floating and treading, eyes closed most of the time, tuning out minor nuisances and most noises (I think), and reveling in the weightlessness of being water-bound. But this time, he had a silent and unintentional partner. One of the other boy's Moms pointed out to me that her son, who is three years older than J and very similar to him in a lot of respects, was doing EXACTLY the same thing about 12 feet away. Neither one seemed aware of the other, but their movements, and tempo, and intent seemed identical. It was Autistic Synchronized Swimming.

One of the boys, though he will never come right out and say it, is qualified at age 8 to be President of the Audobon Society. Upon watching some ducks (apparently a newfound 'special interest' for Baby C) one Mom asked another what kind of duck was that peculiar one with black feathers and a white beak. This boy, who was otherwise silent as he watched the ducks (and was keenly aware of all other surrounding wildlife) piped up and said, "That is NOT a duck, but it IS a Fowl. That is a Western Coot." Later as, he walked along side me in his trademark skip-step with windmill arms, he stopped and whacked my arm with his. "Look! 2 Grey Herons!" And he skipped off. His identification abilities do not stop at birds - he intently studies any and all animal info he can and is an expert in recognizing virtually all birds, critters, and bugs in Southern California. He is 8 years old.

Several of the campers found great solace in enjoying some time around the campfire. Some of these campers enjoyed cigars, Black Bush whiskey, and a game of Dominoes. These rare and elusive creatures are called DADS, and can be viewed in their natural habitat sometime after 11:00 p.m.

One of our goals was to get J to learn how to ride a bike. This he did, for at least 20 feet without anyone's assistance. Hooray for J! Physical coordination is not one of J's long suits (as I wrote about here). Meanwhile, my middle son T quite literally drove his bike into the lake. When I came along with Baby C strapped in behind me (and limited in my ability to react as a result of that), one Mom had jumped off her bike, and was diving in after T who at that point was just seen as a floating safety helmet. She retrieved the child and the bike. T, once he shook off the initial shock, turned to me and said - and I quote - "That was AWESOME!"

Baby C likes ducks, Baby C likes water. Baby C does not respond to his name very well when interested in other things. Baby C will walk well over 100 yards without ever looking back to 'reference' Mom or Dad. Baby C has the autistic child's trademark lack of a sense of "danger". Baby C was watched very, very closely every minute of the time. Baby C's parents, One Dad and One Mom, are looking forward to Baby C becoming plain ol' C. The terrible two's started in our house 6 years ago and haven't stopped yet as the baton has been passed form child to child. Do we get an award for all of this? Oh yeah, we did :)

Ya know .. this wasn't so bad to get back at it. Maybe I'll hang around here at One Dad's Opinion a bit more often...

Way Beyond Awareness

2009-06-27T21:22:00.000-07:00

Though I haven't had adequate time to organize my thoughts prior to writing a summary of the really great day we had at USD's Summer Autism Conference, I have to refer back to my write-ups of previous experiences there and arrive at the conclusion that only an inadequate summary is possible anyway. To actually grab a hold of and present to someone who was not in attendance the overall tone of this conference would be exceedingly difficult.

Fortunately, veteran Hub blogger Dad of Cameron (Do'C) has provided an excellent blow-by-blow of our 2-hour presentation, including links to some of the video and written media that we utilized in our presentation. Do'C also added a palpable energy to the presentation that would be sorely lacking without his contribution.

I couldn't be more pleased than to count Bev as among my friends and allies, as she is quite simply one of the most elucidating people on the subject of autism that I have had the pleasure to encounter. Bev gives of herself in many ways - far moreso than myself or Do'C - in terms of the personal commitment required to carry this all the way through. I respect that immensely, and I think anyone who has seen Bev's presentations would agree that there is something - a very nebulous, abstract something - that is pervasive during her presentation and that creates an intensity that is difficult to describe, but easy to buy into. I think the word I am looking for here is ... Honesty.

Two amazing people that I am proud to be associated with.

I want to extend a personal invitation to any new blog readers who may be visiting after seeing or meeting us at USD to shoot me an email or comment on this post if you would like any further information from our group beyond that which we talked about during the conference. Please also look at the archives or maybe some of the "Best of One Dad's Opinion" on the right sidebar if you are interested in other things I have written.

One SLT asked us during the panel presentation what resources may be available to get our message of dignity and respect to the group that she works with at her site, many of whom speak Spanish, Kumeyaay, or Filipino as their first language. I mentioned the Exceptional Family Resource Center as one possibility for a local resource, and so have included a link to their website (click the underlined words). I would take a personal interest in assisting the EFRC to archive and offer some of the resources that are available via the Autism Hub, if you choose to initiate this contact. Stephen Hinkle also mentioned Babelfish as a posible resource for such families. It also so happens that I am a passable Spanish speaker, and Do'C is quite fluent.

I'd also like to thank, once again, conference organizer Dr. Jodi Robledo (whoe husband and infant daughter were also diligently spreading sunshine all around the conference environs) and , of course, Dr. Anne Donnellan. Of Anne Donnellan I have often said before, she was "ND" before "ND" even knew itself existed.

Of the other presenters; among them Stephen Hinkle, Martha Leary, Nan Negri, Diana Pastora-Carson, Jacqui Thousand, and others - I simply can't say enough good things.

Thanks also to Steven Kapp for his contributions, and also to Daniel Lightfoot from Autism Speaks - a research scientist who wanted to - and I believe did! - learn some new things from the autism community that go far beyond cell behavior.

And to the teachers, administrators, SLTs, aide workers, and parents who took the time to attend the conference - thank you! I hope you benefitted from the time invested and that you will recommend others attend this great conference in the future.

Comic Relief

2009-06-17T08:43:00.000-07:00

"SOIL"

That is the name of an online comic book I stumbled across written by one Dan Woodman. Dan Woodman, according to his "About the Artist" page, is "...mildly autistic. The process of creating SOIL is intended to be therapeutic as well as humorous. Dan identifies with SOIL’s characters — especially Cory — who illustrates many of Dan’s own personal challenges..."

I read some of Dan's comic strips and found them to be wry, and funny, and very good at representing specific challenging aspects of Asperger's Syndrome.

Regardless, it is very nice to see the culmination of the effort and creativity that Dan is applying to this comic strip. I would be thrilled to see "SOIL" make it in to a mainstream setting such as a major newspaper so that more people could be exposed to Dan's work. If you explore the website you will see that "SOIL" has been seen in some local papers and has some nice reviews as well. There is even a book, cited as "A massive collection of SOIL in one volume!"

So kudos to Dan Woodman and "SOIL", which now ranks as my second favorite comic strip on the subject of autism. My absolute favorite? Square Talk, by Bev at Asperger Square 8.

Encore at USD

2009-06-15T07:33:00.000-07:00

I am very pleased to inform friends and readers that a small group of Autism Hub bloggers will once again be presenting at the University of San Diego's Autism Institute on Friday, June 26.

This year's conference is titled "Together We Can Do It!: Building Personalized Supports and Instruction Through Relationships and Collaboration", a very appropriate title that once again captures the approach espoused by Drs. Anne Donnellan and Jodi Robledo who lead the Autism Institute. Read here for a piece I wrote about the type of work Drs. Robledo and Donnellan have published.

I am very proud to stand together with Bev and Dad of Cameron in presenting to the audience of professional educators and service delivery providers, and hope that the diversity of our own opinions and styles of delivery give the attendees a feel for the diversity of thought and opinion that is represented by the Autism Hub.

This will be the third time the three of us have assembled for this purpose, and I hope that our presentation will be met with the same level of enthusiasm as we have experienced in the past. You can read more about those remarkable experiences here (January 2008), here and here (June 2008).

If you are a casual reader of this blog or the Autism Hub in general, if you have an interest in the type of things we will be discussing, we'd love to see you in San Diego in two weeks. Please feel free to email me with any questions you may have.

Thanks to Bev for the great poster!

Another Grade, Another Great Teacher

2009-06-13T07:29:00.000-07:00

J has been so blessed with being placed with the most outstanding teachers in his few years of school. Last year, Ms. D'Nealian created an opportunity for The Best Story Ever and even sent postcards to our little guy. This year, Ms. Potato continued the string of superior educators, and was integral in fostering an atmosphere of patience and respect for J in his first grade classroom. Along with the help of J's classroom aide, Ms. Kathy, J had a good year in which he developed some friendships and had strong academic success.

It is amazing to think I wrote about J's Preschool graduation here just two years ago, and now he has graduated first grade.

J has a lot of struggles with transitions, and he was fully aware yesterday that the school year was coming to an end. Even before we left the classroom, his eyes were misty and the corners of his mouth turned down as he anticipated the end of his time in Ms. Potato's class. By the time we finished his afternoon session (and his little brother's too) at REINS, and headed off to dinner, he was downright morose. Not to worry - Ms. Potato is just a phone call away, and after a brief phone call J was feeling marginally better. Today, J will write a letter to Ms. Potato - an exercise that always seems to help him sort and settle things out.

Here is the message the Ms. Potato had for us parents. If you had ever met this wonderful teacher, you'd know that she means every word of it.

IRL

2009-06-05T20:31:00.000-07:00

Strangely, for someone who has only sent a handful of text messsages and who is woefully unacquainted with the "shorthand" techniques widely used for that purpose, just such a phrase jumped to mind when titling this post.

"IRL" means "In Real Life", and this post is to perhaps explain to ongoing as well as potentially new readers of One Dad's Opinion that life has been going full speed ahead despite my uncustomary lack of attention to the blog. Writing this blog in many ways has been a transformative experience, in that it creates a de facto personal journal, public (though shaded) record of the early years of our complex family, a window to One Dad's thoughts and how those thoughts shft and change over time, and a self-proclaimed cul-de-sac in the online neighborhood of autism parenting. So I always end up regretting not dedicating the time to keeping up. Apologies, and on with it then!

Okay, so back to Real Life. L (my lovely wife) and I were thrilled when, in the mail a few weeks ago, we received notice that we had been nominated for - and in actuality had won - an award for "Excellence in Special Education"! Hooray for us! Hooray for J! Hooray for Baby C, who will be soon entering the selfsame system that has awarded us for our efforts!

I have written several times about our great school district on this blog - here, for example, is a post from May 2007 detailing what seemed then to be (and indeed turned out to be) a successful IEP development process. It provides a glimpse at the type of marvelous people we have had the pleasure to work with, as well as how we have approached the sometimes-contentious process of requesting services for J.

As it turns out, the same Special Education Director has worked with us since the first day J was brought to the school system. She was the one who nominated us and gathered a consensus from within the school district to present their case. The award we won was for "Collaborative Parents". Upon first being informed of this, the skeptical side of me was like "so, collaborative means Pushover, right?" When I had some time to think about it, I realized that there is power in that word. Collaboration is "the act of working together, in unison' ... for a common goal. Despite all the "autism wars" being fought on so many fronts out there, we had somehow found a groove in which our son's needs were best met through cooperative, mutually advantageous scenarios.

Upon receiving the award, I couldn't help but include in my brief words on stage (as L stood in the background, not at all comfortable in the spotlight) that this award really is for her. Look, I may write a decent blog post now and then, and autism advocacy has led me from presentations at academic conferences to interviews on NPR, but nothing I have ever done holds a candle to the work that my wife has done. She is the one who built these strong bridges, she takes him to school everday, she has shared a zillion small successes with him that so many moms and sons would take for granted, she has helped him in more ways than I can invent to write about. So here is One Dad's Opinion that One Dad's Son has One Great Mom. And now? Now we have the hardware to prove it!

Strong Current, Narrow Channel

2009-04-18T20:26:00.000-07:00

I am really interested in a rather unexpected (to me) and quite possibly major shift in the course of autism research funding and guidance that was announced today.

The Autism Science Foundation launched its existence and posted a website today, amidst significant media hoopla and statements made by several important directors and members.

You will, of course, see numerous analyses of this new development over the next few days and weeks. Here's mine: I hope they dedicate themselves to research with tangible benefits to autistic people today and in the future.

The people involved (founding members? Board of Directors?) could not be a more interesting ensemble. I find a lot to like, and frankly an equal amount that makes me nervous.

Begin with Allison Tepper Singer, the former Executive Vice President of monolithic autism charity Autism Speaks, who co-founded the new org with Karen London, formerly of NAAR.
Ms. Tepper-Singer uttered one of the most notorious lines heard in autism documentary film history when she expressed her urge to drive herself and her daughter off the George Washington bridge - with her daughter in the room with her. This, as some will recall, was an early rallying point of the Autism Hub itself - a galvanizing moment that some of the original Hubbers might tell you went a long ways towards cementing the Hub's eventual activist-style approach to controversial issues.

Allison Tepper-Singer left Autism Speaks last fall over a hubbub relating to an IACC vote over funding vaccine research. She stated that her intent to vote against further research in that area clearly opposed the will of the powers-that-be at AS, and resigned as a matter of principle. The new org's initial media statements assert a continuation of that foundational belief:

The Autism Science Foundation's mission is premised on the following facts and principles:
Autism is known to have a strong genetic component. Research must aim to discover the mechanisms of action that trigger autism, as well as safe, effective and novel treatments to enhance the quality of life for children and adults currently affected.
Early diagnosis and early intervention are critical to helping people with autism reach their potential, but educational, vocational and support services must be applied across the lifespan. Science has a critical role to play in creating evidence-based, effective lifespan interventions.
Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

I agree with the entirety of that triumvirate of statements, though they do fall short of covering the full range of things I'd like to see flow from our scientific community for autistic people. Its a heck of a start, though, and provides a spectrum (ahem) of goals that can be worked towards.

Also on the Board of Directors is one Dr. Paul Offit. I was extremely pleased to see Dr. Offit's inclusion with this new science group, as he has certainly earned his stripes in the vaccine-autism conflict and has emerged as a knowledgeable leader with great perspective on the science, the media's interpretation of the existing science, and the (quite frankly) dark nature of the more extreme anti-vaccination autism activists. Dr. Offit's book, "Autism's False Prophets" should be required reading for all young parents worrying over vaccinating their kids, for parents of young autistic children who may be considering some of the more dangerous, bizarre, or expensive snake-oil treatments sold as autism cures these days, and for any and all members of the medical and treatment communities that relate in any way to vaccines or autism. Furthermore, Dr. Offit's inclusion, as well as the bold and direct vaccine-related statements made by the Foundation, provide clear focus for their donors and decision-makers, eliminate the political minefield that is vaccine/autism debate, and further marginalizes Generation Rescue (a group that doesn't seem to stay on the fringe despite its junk science and vulgar set of personalities).

Further perusal of the Leaders of the Foundation turn up some other very interesting names.

Catherine Lord is considered to be perhaps the pre-eminent expert in autism diagnostic issues. She is the developer of the Autism Diagnostic Observation Scale (ADOS) which is the most well-supported diagnostic tool currently used. Interestingly, she is (or has recently) released an ADOS-I for infants. When my son Baby C was diagnosed back in August at age 19 months he just missed the release of the ADOS-I.

Harold Koplewicz is well-known around these (Autism Hub) parts for his leadership role in the Ransom Notes campaign, which was utterly despicable. It took tremendous media pressure for him to accede that the campaign was misguided and harmful, but ultimately he did just that. At the time, I recall feeling stunned, in that he essentially owned up to a mistake that totalled probably to the tune of several hundreds of thousands of dollars. He then initiated a series of town-hall meetings to hear more from the ND community - in coordination with Ari Ne'eman as I recall. I'd like to hear from Ari as to what he thinks we might expect from Dr. Koplewicz' involvement with the Foundation.

At the risk of downplaying their obvious strong credentials, I'll omit going into detail on each of the other members. Suffice it to say that I am just fascinated looking at the group that has been assembled, and I feel they have established an extremely strong group to help guide research.

Bottom line, folks, is that autism research is a rushing river these days. It is a strong current forced between two steep banks forming a very, very narrow channel of success. As I have grown weary over the past few years of watching the constant grind that is the vaccine-autism war and its resulting removal of resources towards truly benefitting autistic people (especially those needing more assitance than my own children), I can only begin to guess at the frustration felt by well-meaning researchers, science leaders, and most importantly autistic people and their loved ones. Here is One Dad's Opinion - no, hope! - that the Autism Science Foundation is successful at navigating that narrow channel.

Forms of Communication

2009-04-17T19:43:00.000-07:00

Autism is a diagnosis made by observation. Specific behavioral criteria are set forth in the DSM-IV-r and the ICD-10 that are used to define the disorder.
It has been my experience as someone who has now met numerous autistic people of many ages and, more specifically, is a parent to two young autistic boys, that any attempt to boil down such a vastly complex thing as human behavior to a 12-point checklist is an exercise in futility. At the same time, I respect the need to have a "neutral" description for autism that can be referenced universally.
Autism, moreover, is described now as a spectrum. By definition, this means that the Autism Spectrum Disorders include Autism Disorder, PDD-nos, Asperger's Syndrome, CDD, and Rhett's Disorder. I have come to recognize that 5 "classes" of ASD are probably not enough, though I think they satisfy clinical needs for the time being.
What I have come to realize over time is that mini-spectrums exist within each category that is used to describe autism. Here is the official list of diagnostic criteria for Autism from the DSM.
To illustrate my point, take item 1.a., which reads:

"marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction"

In the case of my older son, this category would describe his former tendency to emphasize use of peripheral vision over direct gaze. Or his habit of dropping small objects from his forehead down to the floor so they would rapidly pass through his field of vision. To this day, he still points using his middle finger (awkward in western society to be sure). He frequently touches people's faces to get their attention - a definite faux pas for someone over the age of 3 or 4. My youngest son does none of these things. Instead, he does things like walking with only one arm swinging in time with his gait. Or always averting his gaze when he is handing something to you, but stares right at you all other times. He regularly scrunches his cheek down towards his shoulder, his head askance. Point being, there is a huge range of things that classify as item 1.a. Exponentially apply that variance by a factor of 12, and you might begin to sense the range of autistic individuality.

Which leads me to a story about my oldest son, J. This story strikes me as a great example of how subtle, but at the same time stark, differences can be. This specific instance relates to communication.
J has armed himself with some pretty strong communication skills over time. But one must at times set aside convention when understanding J's particular way of approaching things.
Last week, my wife L was busy around the house when J approached her and tapped her on the shoulder. "What is it?" she said.
"Did you hear something?" cames J's reply.
"No - why, what do you hear?"
"I think it sounds like Thump-Thump-Thump!"
Puzzled now, L asked him where he had heard that. Where was it coming from?
J poked rapidly at his chest. "I think its my heart."
Mildly alarmed, L asked "J, honey, is your heart thumping? Are you okay?"
"I think its because I am nervous to tell you somefing."
*Sigh* "What do you want to tell me?"
"Well ..... tsk .... well .... IthinkItouchedthechairanditkindoffelloverinthekitchen!"
L, of course, was relieved on several levels that this minor thing was the cause of J's guilt trip.

Point being, this is a highly atypical and roundabout approach for a 7-year-old kid to take. But it is J's particular way to do it, and we embrace that. Time will tell how Baby C develops his own style of communication. No doubt it will be other than typical. Equally doubtless is that it will have his own personal stamp on it, and that we will strive to support him in his efforts to develop it.

A PSA I Can Support

2009-04-16T18:41:00.000-07:00

Many of us in the autism community are constantly appalled at what passes for "awareness" these days. There is a near-constant barrage of negative publicity regarding autism. I have seen TV ads that create a metaphor between autism diagnosis and automobile deaths in young children. PETA got in on the party a while back, and I wrote about that. Autistic kids are framed as 'monsters' in a recent campaign in the UK. Of course, there was the infamous "Ransom Notes" campaign of last year. So I expect you'll understand that I cringe when I see another Autism PSA coming down the turnpike.

This one is different. Many thanks to the Dan Marino Foundation, Ari Ne'eman and ASAN for doing a great job with this one. I hope there is more to come from this coalition.

Of course, there are other positive awareness activities going on. Here is one very good example:
Autism Awareness Video by Bev

World Autism Awareness Day

2009-04-02T10:50:00.001-07:00

It occurs to me that today is World Autism Awareness Day.

As a means of commemorating this day, I think after work I will go home and be acutely AWARE of how I am the luckiest guy in the WORLD to have the family that I have been blessed with, and that family happens to include two AUTISTIC sons.

Challenging Beliefs

2009-03-26T14:59:00.000-07:00

I am a supporter of the concept of Neurodiversity as I understand it. After a few years of striving to improve my working knowledge and understanding of autism, I think I have a pretty good grip on this concept. I can assure you that my understanding of Neurodiversity varies significantly from the ideological strawmen extended by ND's detractors. Perhaps the most common such strawman is the one that roughly states "The Neurodiversity crowd will have you believe that autism is simply 'beautiful' and that we should do nothing to mitigate any challenges for autistics since it is, in their view, just part of their personality or something". This, of course, is patently wrong.

I am a supporter of the concept of Neurodiversity and I fully acknowledge the challenges and negative aspects that can and, in many cases, do plague autistic people. In a radio broadcast to 10's of thousands of Southern Californians, I was asked about this and answered the same way I am answering here. In presentations to audiences at the University of San Diego Autism Institute, I have made the same statements.

Where am I going with this? Well, I read an essay today. A really powerful, deeply disturbing essay. And after I read it, I couldn't help but think to myself how quickly the knives would be drawn by the ND detractors out there after reading it.

The Monster Inside My Son
Above is a link to the essay, penned by Patricia Ann Bauer for Salon.com. In it, Ms. Bauer bares her soul and describes a shift from the type of mentality I currently espouse and write about and talk about (in her own words: "For years I thought of his autism as beautiful and mysterious. But when he turned unspeakably violent, I had to question everything I knew.") If you are autistic, or if you love someone who is, brace yourself before reading this. But please do read it.

You see, it is fairly easy to predict the outcry once this essay makes the rounds. From the 'vaccines cause autism' crowd over at, for example, Age of Autism, there will be a cry of "Hurry up and cure your kids now before they become raving lunatics! Just click on our sponsors tab and order enough vitamin supplements and natural chelators to save your family!" Don't believe me? They've already done this, just last week.

From the 'autism is horrible and don't dare try to tell me otherwise' camp, you might see a reaction that tries to paint Ms. Bauer's experience as the inevitable endgame for "shiny happy people" parents like me who simply refuse to give in to the rhetoric revolving around how devastating autism inevitably is. You might see a call for us to pull our head out of the sand and acknowledge that our lives really have been demolished by having autistic kids. You will of course see the tired, old accusation that we are neglectful in not treating our kids! All of this is incongruous when oriented towards people like me and just about every parent-advocate I know who identify with the neurodiversity concept, all of whom carefully guide their children through various forms of available therapies, supports, and services in an effort to provide the best possible outcome for their kids.

Guess what? Nothing always works. This is a powerful, overriding message that I get from Ms. Bauer's essay. Was her son provided adequate supports, services, love and affection? I think it is a pretty sure guess that yes, he did, judgng by Ms. Bauer's long standing record as an admired and knowledgeable disability advocate and her very clearly expressed affection for her son. In her own words, "It happened no matter how fiercely I loved him or how many therapies I employed."
It is chilling to me to read the following, "Andrew started life as a mostly typical child. But at 3 and a half he become remote and perseverative, sitting in a corner and staring at his own splayed hand. Eventually he was diagnosed with high-functioning autism, a label that seemed to explain everything from his calendar memory and social isolation to his normal IQ ... We got him into a good program and there was a brief, halcyon phase of near normalcy -- a time I long for still so ardently that I feel hungry for it at a cellular level ... I occasionally even referred to him as 'cured'." Chilling because this could be one of my sons. We have used the sam terminology at times for both boys, saying to ourselves on some days, "Gosh, its almost like he's 100% typical".
Then there are the days that one comes home with clothes destroyed from cutting them, or chewing them. Little outburts of anger that, when asked about, are simply answered in a low, monotone voice "Why do you ask me about that I don't want to answer that." Or my youngest, who we jokingly referred to as "The World's Angriest Baby" prior to our understanding of how his neurological development was affectng the way he dealt with us and his surroundings. He is a little force of nature, to be sure.

So there you have it. A "neurodiverse" dad, expounding on the difficulties that autism can entail, the fears that we have as the future seems less far away than it used to. And all this in response to a poised, respected autism advocate who has been rocked and brought to her knees in the last few weeks and months by the tragic changes experienced by her son.

I am not attempting to advance the concept that autistics are more likely to become violent, not am I trying to create fear that this type of outcome is inevitable in some individuals. I am simply stating that gut-wrenching descriptions of problems such as the one on the linked essay have a powerful and essential role in helping to form my view of the many potential challenges that lie ahead for my own sons and all autistic people out there.

A Stark Contrast

2009-03-25T11:28:00.001-07:00

After a 6 week hiatus from blogging, I am moved to write today by the stark contrast in emotions I experienced from two separate sources on the internet today.

The first set of emotions were caused by this despicable opinion piece on the website Opposing Views. Titled "Its Time for an Abortion Pride Movement", it is penned by one Jacob Appel, who claims to be a bioethicist. After having my interest piqued by the title, it took me a few paragraphs of reading to realize that Mr. Appel is not kidding. He actually believes that aborting children's lives during pregnancy is not only perfectly acceptable from an ethical standpoint, but also something its participants should be proud of and build an identity around, much like being Irish or being gay. Some excerpts, in case you would rather not read the article:

"In contrast to women who have foregone abortion, women who have chosen to terminate their pregnancies are rarely encouraged to take pride in their decisions. That is unfortunate."

"In the current political climate, deciding not to bring a fetus to term, if a woman is unready to parent, or if that fetus is likely to lead a life of great physical suffering, is a courageous and noble moral choice."
(I added the bold emphasis above, simply to point out that many readers of this blog understand where this type of reasoning comes from and where, in turn, it leads).

"In short, women should not merely have the right to end unwanted pregnancies, they should have the right to be proud of having done so. Surely, there is enough suffering in this world already without adding infants with Tay-Sachs disease and Lesch-Nyhan syndrome to the mix."
(I wonder where autism fits in this bioethicist's (sic) spectrum of suffering?)

"Our message should not be merely toleration or resigned acquiescence, but genuine joy that someone has made a decision for their own and for the collective good."
(There's that elitist mentality again. Does the collective good include stopping an "epidemic"? Does it factor in Special Education costs? )

I could go on at some length about the unbelievably bankrupt arguments this fool is putting forth about Abortion Pride, but it is not really necessary. I think most readers will see where this type of reasoning leads. And it certainly raises the spectre of the possibility that a prenatal "Autism Test", should one ever be developed, could lead people who support this type of thinking to opt for the abortion.

And this leads to the other item I came across. It is related from the standpoint of abortion's impact on the population of people with Down Syndrome. I don't know the exact figures, but suffice it to say that prenatal detection of Down Syndrome has resulted in the deaths of huge numbers of unborn infants. I would hope that misanthropes such as Mr. Appel of "Abortion Pride" infamy would consider learn a lesson in life from simple, true stories such as this one.

VICP Decisions are in...

2009-02-12T07:38:00.000-08:00

When I became aware that the Vaccine Court (VICP) was to soon announce their decisions on the three test-cases for the Autism Omnibus Proceedings, I thought about what I might write - indeed if I might write - about the outcome. Having closely followed and carefully tried to understand the various expert positions and arguments, I felt quite certain that the petitioners had very little chance of establishing causation. At the same time, I anticipated a profound sense of sorrow for the thousands of families involved, families whom I feel have been preyed upon by a group of unethical, malfeasant physicians and alt-med practitioners. How could I express this feeling in a way that is respectful to the families involved without coming across with an "I told you so" posture?

Fortunately, I don't have to come up with anything, for Special Master Hastings wrote a poignant and powerful conclusion to his decision on the Cedillo portion of the AOP. The conclusion sums up perfectly how I feel about this dark chapter in autism's timeline.

CONCLUSION
The record of this case demonstrates plainly that Michelle Cedillo and her family have been though a tragic and painful ordeal. I had the opportunity, in the courtroom during the evidentiary hearing, to meet and to observe both of Michelle’s parents, and a number of other family members as well. I have also studied the records describing Michelle’s medical history, and the efforts of her family in caring for her. Based upon those experiences, I am deeply impressed by the very loving, caring, and courageous nature of the Cedillo family. Those family members clearly have done a wonderful job of coping with Michelle’s conditions, and in caring for her with great love. I admire them greatly for their dedication to Michelle’s welfare.

Nor do I doubt that Michelle’s parents and relatives are sincere in their belief that the MMR vaccine played a role in causing Michelle’s devastating disorders. Certainly, the mere fact that Michelle’s autistic symptoms first became evident to her family during the months after her MMR vaccination might make them wonder about a possible causal connection. Further, the Cedillos have read about physicians who profess to believe in a causal connection between the MMR vaccine and both autism and chronic gastrointestinal problems. They have visited at least one physician, Dr. Krigsman, who has explicitly opined that Michelle’s own chronic gastrointestinal symptoms are MMR-caused. And they have even been told that a medical laboratory has positively identified the presence of the persisting vaccine-strain measles virus in Michelle’s body, years after her vaccination. After studying the extensive evidence in this case for many months, I am convinced that the reports and advice given to the Cedillos by Dr. Krigsman and some other physicians, advising the Cedillos that there is a causal connection between Michelle’s MMR vaccination and her chronic conditions, have been very wrong. Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment. Nevertheless, I can understand why the Cedillos found such reports and advice to be believable under the circumstances. I conclude that the Cedillos filed this Program claim in good faith.

Thus, I feel deep sympathy and admiration for the Cedillo family. And I have no doubt that the families of countless other autistic children, families that cope every day with the tremendous challenges of caring for autistic children, are similarly deserving of sympathy and admiration. However, I must decide this case not on sentiment, but by analyzing the evidence. Congress designed the Program to compensate only the families of those individuals whose injuries or deaths can be linked causally, either by a Table Injury presumption or by a preponderance of causation-infact evidence, to a listed vaccination. In this case the evidence advanced by the petitioners has fallen 173 far short of demonstrating such a link. Accordingly, I conclude that the petitioners in this case are not entitled to a Program award on Michelle’s behalf.

/s/ George L. Hastings, Jr.

Baby C (and friends)

2009-01-18T19:15:00.000-08:00

Some of you have been asking how Baby C is doing these days. I appreciate your questions and concerns. Many readers here know that Baby C was determined to be autistic back in August. At the time, even though it was the second such diagnosis we had experienced as parents, and even though we are generally at peace with autism and all that goes along with it from a young family's perspective, and even though we were much more 'equipped' with information than the first time around, we still had great concerns about Baby C and his outcome.

I, for one, fully realize that autism is a different experience for different people. Some are more significantly affected by the disabling aspects of autism. Some are in environments that, combined with their autistic characteristics make things difficult. There are rough spots over the lifespan. Some have challenges or discomforts that their communication differences make very difficult to convey and to request help for. Some have co-occurring cognitive or physical disabilities. Some just frankly want to be neurotypical. The list goes on and on. Autism is not "all good", and as parents my wife and I worry all the time about Baby C and what challenges lie ahead for him. That goes for both of his brothers too, as with any parents and kids, but for Baby C and his older brother J, we have the added concerns of autism.

As of now, Colin is just a happy, growing boy. He has strong likes and dislikes, he is kind of obnoxious most of the time due to pretty constant 'loudness', and his happy moments shine brightly. During his first 12-16 months of life, there were precious few happy moments. He was, quite simply, the most challenging child I have ever met, seen, or even heard of. He almost brought us to our knees with his perpetual, um, er, .... discomfort with the world around him. It is a tremendous relief to see the improvement in his demeanor and enjoyment of himself and our family.

So here are a few pictorial updates of little Baby C (who is not really a baby anymore).

Fall comes late in Southern California, and these leaves just fell from our Mulberry tree over the last three weeks. Baby C loves when Mom rakes them into a leaf-pile!

C just had his 2nd birthday this past week! In our family, on the first birthday, the baby gets to "dig in" to their birthday cake with full gusto and no rules. In the case of Baby C, he showed utterly no interest in his cake on that first birthday. So we decided to let him have a chance at Round 2, and he certainly appreciated the offer. Note how our resident canines uderstand the concept of 'positioning' as they hope for some scraps to hit floor. Believe me when I tell you that their patience is rewarded more often than not.

Speaking of the dogs, any mention of Baby C would be incomplete without also caling to attention his best buddy - Marley. Marley is the Rottweiler/Lab mix on your right in this photo. He is still very much a puppy, albeit a 100-lb+ puppy. And he still tips the scales a few pounds lighter than old man Chance, who is often seen lying down as in the photo above. Marley and Baby C play together all day, and are best buddies. For a picture of when they first met, look here.
This photo shows Baby C surrounded by some of the wonderful people at REINS, where he is the youngest rider they have ever had. After a period of adjustment, he seems to have reached a point (on most days) where he genuinely enjoys riding horses. In case you are wondering ... that's a pretty small horse. And this picture was taken while we were still fighting the 'helmet' battle with him.

Buyer Beware - ACAB

2009-01-13T21:53:00.000-08:00

Here's a "press release", issued on that highly respected stalwart of news wire services, "ChiroEco.com", that trumpets:

"...a world-class board of advisors that bring extraordinary expertise concerning autism spectrum disorder care and represent the many different facets of recovery. This board oversees “Hope for Autism” the first BioNutritional Care certification program ever designed specifically for chiropractors."

This "board of advisers" is the board of one American Chiropractic Autism Board. Sounds very official! How encouraging!

Or maybe not ...
As a friend recently put it, "Health Care Fraud is a booming business, and the bad guys know all about autism."

Let's begin with a quick trip over to the American Board of Medical Specialties website, which is the "gold standard" for physician certification. If a "board" is not listed there, its not legit. A quick search for 'American Chiropractic Autism Board' and 'ACAB' turns up ...... nothing! So let's understand at the outset that we are dealing with a "...world-class board of advisors..." that has no regard or respect for established accreditation/certification with mainstream medical standards of practice. But that's nothing new for the cottage autism "cure" industry, is it?

So the ABMS search came up empty. How else can we validate the credibility of this seemingly remarkable group that is in a position to " [meet] ... the demand of parents who are desperately searching for a physician to help their child recover;..."
Conveniently, the press release has listed on the bottom a link to their very own website! A quick perusal unveils their "board members", which turns out to be a veritable pantheon of purveyors of quackery. To wit:

Andrew Moulden, M.D., Ph.D. (watch about 2 minutes of this video - recorded at a 9/11 conspiracy theorist march, no less - for all you need to know about this guy).
Boyd Haley, Ph.D., the man who has concocted and patented a home-tested chelator to market to parents of autistic children.
William Shaw, Ph.D, who is director of the Great Plains Laboratory. This is the primary "mail-order" lab that generates deeply misleading and flawed reports on heavy metals contamination among autistic children, primarily by comparing "provoked" urine samples to "standardized" measurements.
And the "Sisters Tocco" - Mary and Renee. Read on...
Renee is a (surprise!) DAN! doc. Hey, don't they require a medical degree for that? Uh, no.
Mary is an "independent vaccine researcher". She sells a DVD on her website - childhoodshots.com - titled "Are Vaccines Safe?"

Let's review for a minute. What we have here is the ACAB, made up of known hucksters, 9/11 conspiracists, anti-vaccine zealots, DAN! docs and other alt-med-gurus, backed by those who operate the bogus testing labs as well as someone who sells a home-brewed chelating agent masquerading as an FDA-approved "nutritional supplement" (OSR by Boyd Haley). Can the rabbit hole of quackery get any deeper than this? Every single one of these players has something to sell you. Speaking engagements, lab tests, DVD's, online consultations, BioNutritional "Hope for Autism" programs, supplements, chelators, certifications. And, notably, not one single peer-reviewed, documented case of even one single autistic child benefitting in even one single way from anything they sell! Its a grand scheme, and who is falling for it? Look no further than the original press release itself, as it so callously labels its target market:

"The benefits of being a certified “Hope for Autism” doctor include:
• Having the solution to the number 1 healthcare crisis affecting children;
• Meeting the demand of parents who are desperately searching for a physician to help their child recover;

• Being a part of the movement of chiropractors who are dedicated to healing our nation; and

• Increasing patient base complimenting autism care and chiropractic, allowing for the best opportunity of recovery."

Unbelieveable, isn't it? Un-freakin'-believable.

Picking up the pieces here, let's just take a quick look back at the purpose of the press release to begin with (believe it or not, we haven't even discussed that yet).
The purpose is to advertise a 3-day seminar. This seminar does NOT include the words 'autism', 'chiropractic', 'nutritional', or even 'health' in its title. It is actually called "The 2009 International Vaccine Risk Symposium". I'm not making this up - its right there on the press release.
The final two days of the 'symposium' will be spent training chiropractors on the newly minted "Hope for Autism" (HFA - nice pun, eh?) certification that promises to:

"... equip chiropractors to responsibly address autism, ADD, learning disabilities, and other neurological developmental problems using BioNutritional Care."

Just two days, and they are miraculously suited to cure children of autism and other neurological problems!

So the next time you see media reports offering a 'balanced' view of the vaccine controversy, please consider that these are the type of people that populate the anti-vaccine side. This is the sales machine that so actively pursues, to use their own words, parents who are "desperately" searching for solutions. And these are the tactics they use.
It is One Dad's Opinion that this is shameful exploitation and needs to be exposed for what it is.

NIMBY

2009-01-11T19:26:00.000-08:00

If anyone doubts the need to expand positive awareness of autism in particular (are you listening, Harold Doherty?), and of disability in general, please read this article from my local newspaper.

It is heart-wrenching to hear quotes from potential neighbors such as:
"We have no guarantee as to who is going to live there and with what degree of mental illness," said Diana Grogan, who lives a few doors down [from a proposed group home in a suburban neighborhood].

Perhaps Diana Grogan should examine precisely what type of guarantee she wants, and what misconceptions about "mental illness" she harbors that make her feel a guarantee is necessary. Perhaps Diana Grogan should consider that her life, too, may be touched by "mental illness", and exercise the same degree of understanding and compassion that she would someday expect others to exercise in her or her loved ones' favor.

There are some encouraging aspects to the article as well. TERI, the organization cited in the article, has been around North County for a long time. I've heard good things about them, and I certainly appreciate the progressive approach they are taking towards promoting independence for those who are involved with their program.

Wii Would Like To Play...

2009-01-10T18:51:00.000-08:00

Over the past year, in particular, we have been trying to help J - now 7 years old - to find some physical activities he enjoys. J, like many autistic people, has a limited range of foods that he eats. Though we do what we can to enhance the nutritional value of his diet, and we have employed numerous strategies to reduce the gag-reflex that accompanies so many different kinds of food, J simply does not, at this age, have an ideal diet. J's limited diet issues are exacerbated by another tendency, or characteristic, that it seems to me is also quite common amongst autistics, and that is that he prefers cerebral pursuits to physical activities. We recognize the importance of leading a healthful life in terms of impact on physical as well as emotional well-being, and have therefore been "signing up" J for a range of activities.

Over the past year, these activities have included Tee-ball. This was not a big hit (please ignore the obnoxious pun), though it is difficult to determine exactly why J never seemed to get into it. I can say that his younger brother, T, on the same team, also did not derive a lot of pleasure or interest from it. It may be an age thing. In the summer, we enrolled J in Tae Kwan Do. There, we definitely found something to his liking. The more individual nature of it, as well as the rigidity of the routines and the "demanding" nature of the instruction seems to really jibe with J's mentality. In the Fall, J joined a soccer team. This had mixed results - he enjoyed the practices due to some of the practice games we would play (i.e. Sharks and Minnows), but during games it was not uncommon for him to simply lie down in the middle of the action. The ultra-bright mornings were not ideal for him in terms of light sensitivity, and he could often be found during his "breaks" from action reading thick books in the foldup chair on the sideline instead of cheering his teammates on. Aside from these structured activities, J fully enjoys games like "Monster Tag" and wrestling with Daddy. And he loves a day at the beach, something we can do with regularity during the summer now that he is over his aversion to the movement of the waves. Surfing is definitely on the slate for the little grommet this summer (maybe Dad can learn a little too!). He also loves to swim in our pool, and has been involved in a therapeutic horsemanship program for over three years.
So at this point - at age 7 - J's physical activity and nutritional intake is a mixed-bag at best, and certainly could use some "catching up" to his pretty remarkable academic achievements.

Enter Wii Fit.

When I first read about the Wii Fit and its remarkable balance board, I knew it would be a perfect match for J and the way he derives enjoyment from his activities. As I write this blog, J and his two brothers are around the corner engaging with the Wii system and working up a good sweat doing it!

You see, the Wii Fit allows J - and everyone in the family - to create a Mii, which is a little on-screen mini-me of each of us. Once created, you step on the board and the system takes your height and weight and establishes a baseline BMI (body mass index). It also measures your overall balance and body posture. It then allows you to set short or long term fitness goals, specifically addressing the areas you would like.
Once you have completed the setup, it records your time spent in the "time bank", and also regularly re-weighs and tests balance, updating your progress vs. goals.
The player then picks aerobic (running, hula hoops), strength training, balance activities (ski slalom, ski long jump), and yoga for posture. The more you play, the more different games you unlock.
All of these features are precisely conducive to J's unique way of learning. First of all, it is engaging without being overly demanding from a social standpoint (unlike team sports). It is unforgivingly rigid in its repetitive nature - it behaves the same way each time. This avoids J's sometime-anxiety about variable things. It has clear, easy-to-understand goals, which play to J's learning style. It disguises physical activity in what seems more of a cerebral pursuit with the use of points, stars, levels of achievement, and gradual unlocking of new activities. Frankly, it is an ideal method for J to improve his physical fitness. Interestingly, since beginning this (at Christmas), J has expressed a higher level of interest in eating more healthfully (even though this does not overcome his extreme sensitivity to certain foods and the way they elicit his gag reflex).

I realize that not all autistic children or adults have would be able to play Wii Fit. I also realize that not all families or individuals can own or access one. But the bottom line is this: I can't recommend the Wii Fit highly enough for any individual who would like to help them self or a loved one to improve their physical well-being in a fun and positive way!

Simple Greeting Exchange

2009-01-07T20:34:00.001-08:00

I have been, as some of you have noticed, quite absent from the online/blogging/autism community as of late. I realize everyone is busy, but my particular version of "busy" has - to paraphrase a classic Mel Brooks line - hit "ludicrous speed". I hope that soon I'll be able to return some focus to this area.

Still, I periodically come across a really meaningful piece of information or postulation that I feel rounds out my understanding of - or appreciation of - the autistic experience. To that end, I'd like to link to an excellent short piece about The Simple Greeting Exchange.

The writer is one Alan Griswold. Am I the only one who would like to offer this guy an invitation to join the Autism Hub? Dig into the archives of his blog for some excellent reading.

Analogy Works Both Ways

2009-01-06T20:33:00.000-08:00

Well ... hello again everyone. Long time, no blog. On with it, then.

In the hubbub of daily life in the D household (and believe me when I tell you that a term that adequately describes our level of chaos has not yet been coined), it is exceedingly and unfortunately rare that focused, direct, one-on-one communication is able to take place.
It is very fortunate, therefore, that my 7-year-old, highly verbal, autism-spectrum son and I have established a new bedtime routine that provides that well-needed time. T, my middle son, is also welcome to join in, but this is a routine that J thinks about now all day long, and simply will not do without. This routine is well known in many households around the world, and is certainly not unique to us. It is ... Bedtime Stories.

To understand why this simple topic justifies a blog entry of its own, one must understand the stage of interest/learning/discovery/passion/focus that J is at right now. I think of him as an intellectual tuning fork in a lot of ways; interacting with him is rewarding (and enjoyable and fun) on so many levels (especially - as many "autism" parents can relate to - being previously told that his likelihood of developing valid communication aptitude is very low) and yet also rigorous by virtue of needing to resonate with his particular and fairly demanding communication style.

Anyway, a few weeks ago I settled into a certain genre of storytelling that is based on modifying fables ("the moral of this story is...") to fit the theme of a young Indian Brave named Redwing. Actually, it began as Redwing - largely due to my ignorance of Native American nomenclature and resulting cliched approach to inventing a name (let alone the Detroit NHL franchise of the same name) - but very quickly changed to a new name.

Me: "This is a story about a little Indian Brave named Redwing. One day Redwing..."
J (interrupting): "But my favorite color is Blue"
Me: "Okay, blue is a great color. I like orange, myself. But this is a story about Redwing and the big archery contest..."
J: "Awww. But my favorite color is blue. Why is Redwing Red?"
Me: "Redwing is his name, but the important thing is that he needs to get ready for the big archery contest! So Red wing decided one day..."
J (interrupting): "If he was blue, then he would be my favorite color, you know."

*pause, as I consider...*

Me: "Once, there was a little Indian Brave named Bluewing..."
and off we went - a tradition was born.

Now we have run into another unexpected issue. J now recognizes when I am using an analogy to his own life to try to create a teachable moment.
Example: We recently took a trip to Hawaii. My wife and Baby C were unable to go, depsite the existing travel plans, due to Baby C's own issues (he was diagnosed with autism in August). J had very significant homesickness issues due to, in his own words, Mommy and Baby C not being with us. After we returned, I adapted a Bluewing story to mimic this set of circumstances. I very cleverly wove a tale about how Bluewing was going "whale-watching" on an island, and how he would be honored to travel with his father and all the fun adventures they would have, etc, etc. At the end of the story, to which he listened with his characterstic stoic intensity, he immediately asked, "Why did you tell a story about me being homesick in Hawaii?"
Hmph.
I explained the value of analogy and how it helps us to understand difficult situations in our own lives, and I think that resonated with him. Because, ever since, he will certainly point out when I am inferring an analogy but he has no real objection to it. In fact, he may have warmed to the idea that maybe the Ol' Man has something relevant to offer his little 7-year old body of wisdom. And I can't help but think of this bedtime story routine as a reasonable extension of Social Stories, which seemed to help J so much from ages 3-5. Social stories presented J with digestible information in the form of a simple storyline accompanied by little pictures (i.e. "going to school" or "visiting Grandma and Poppa"), whereas Bedtime Stories seem to be fulfilling a more advanced set of needs in terms of a budding sense of ethics and morals (Bluewing is a pretty upstanding little Indian Brave) in a format that is easily digestible due to the routine and mutually-agreed-upon format.
All of which serves as yet another reminder that, in many ways, raising a child (or two) on the autism spectrum is not wholly different from raising a typically developing child. A little understanding and acomodation does go a long way...

Tonight, I told J that he needs to tell me a Bedtime Story. That from now on, Tuesday night is the night that he has to 'reciprocate'. Do you doubt his grasp of the nature of the analogy?
J: "There once was an Indian Brave named Orangewing. (big smile; "because that's your favorite color, Dad"). He knew he had to go to work. But he was sick. So he went to work sick, because he always goes to work. "

How To Cook A Turkey

2008-11-19T19:16:00.000-08:00

J had a homework assignment that asked him to write down how a Thanksgiving Turkey is cooked.
Here is the outcome of his efforts:

Since J's handwriting is a bit shaky, here is the translation:

"List of Ingredients"
Turkey
Corn
4 cups of sugar
Microwave

"Directions"
First find a turkey then put corn in it. then put 4 cups of sugar on it. put it in the microwave and cook it for four seconds.

Mmmmmmm.... I sure am looking forward to Thanksgiving dinner this year!

More, please!

2008-10-21T20:49:00.000-07:00

I have spent a great deal of time, at great benefit to myself, engaging autistic adults since my oldest son was diagnosed with autism in 2004.
Aside from simply enjoying the exchanges, and from learning copious amounts about what living with autism may be like from an experiential standpoint, I have perpetually searched for meaningful things that could, hopefully, cause me to become a better parent to my son by their knowing.
Firm conclusions that are somehow specific to autism have been elusive. In fact, and as a polar opposite to the Jenny McCarthys of the world, I have found that parental approaches effective for autistic children are remarkably similar to parental approaches for neurotypical children. Be patient. Be kind. Teach in a way that is effective. Sublimate your own needs for the needs of your child. Form a supportive community. Roll with the proverbial punches. Be prepared to lose a little sleep. Maximize the fun moments, but know when to calm things down. Expect yourself and your child to be disappointed and frustrated sometimes. The list goes on, and is certainly familiar to anyone who has done their best to raise a child.
But ... there is one thing that seems to be incredibly impactful in improving the quality of life for the autistic child/person. This thing is debated from a tremendous number of angles, but in the endgame most folks agree upon its importance. This thing is communication. If I could wish one thing for all autistic people, including my own two sons who are on the spectrum, it is that they find satisfying ways to communicate that expand the boundaries of their interpersonal environments.
My oldest son is an atypical communicator. He is a boy who, upon casual observation, does not move or behave in such a way as to lead someone to believe he may not be neurotypical. But, all it takes is a brief conversation with him to know you are dealing with someone special. Community members who are strangers (ie. cashiers, librarians, friends' parents) are often "thrown off" by J's interactions - they simply don't know how to take him. Still, he communicates effectively if not typically.
My youngest son, however, is not communicating verbally. Developmentally, this is not shocking as he is only 21 months old. Lots of 21-month olds don't speak. At the same time, he is not even showing the vaguest signs of verbal communication yet. Knowing what we know about the importance of communication, we started C on a sign language program a full month before he was even diagnosed with autism. That was in July. It is now October and, guess what? Baby C is signing reliably! Only two words, but they are really important words for a 21-month old to know. The first one is "eat".

There could be no more fitting end to this post that taking Baby C's second sign and directing it right back at him:

"More, please!"

Spreading Some Sunshine

2008-10-12T18:48:00.000-07:00

Saturday night marked the annual "Hoedown" at REINS, also known as "The Happiest Place in the World". I have written about REINS previously, as it is the place we take both J and Baby C for horseback riding.
REINS has one simple requirement for its riders - that they experience a disability. For this reason, our middle son T has not been able to participate. No matter, as he is well known around there for his wit and shiny attitude, and loves to go as much as his older brother. His younger brother is not yet quite sure what to make of the place, but his most recent session went just a bit more smoothly that the prior ones.

It was our great pleasure this year (my company, my family) to donate the fresh flower arrangements for all of the guest tables at the Hoedown. I am fortunate enough to be in a leadership role in a company that is in the business of wholesale fresh flower distribution, and it occurred to me that providing bright, cheery flowers for the all-important, annual fund-raising event is one way that we can give back after all the wonderful experiences we have had there over the years. So for a few days leading into the event, several of my employees who have arrangement-design experience, led by their wonderful manager Leticia, prepared two different designs - one for the expensive "Sponsorship" tables, and another, smaller design for the other tables. Keep in mind that this is an all-outdoor event, western-themed, with an Autumn twist due to its occurring on October, complete with a riding demonstration by some of the students/participants. After having spent that Saturday morning working, I hopped in the big ol' work truck - loaded with fresh flower arrangements - and drove it over to the site of the event, which is right on the grounds of REINS.
With the help of Kaitlyn and Jessica - two lovely ladies who have not only taught J to ride horses but also have helped J and T with swimming lessons over two summers, and have generally become dear friends to our family - we placed all of the floral arrangements on the tables.
I must admit, they did add a certain amount of charm to the whole event.

Flowers aside, the main event of the Hoedown is the riding demonstration. I'll tell you, once the demonstration is underway, there is rarely a dry eye in the place. The lengths that some of these riders go to in order to participate here(not just for the Hoedown, but every week, all year long) is just ... inspirational.
The first rider provided a fascinating counterpoint for our family, in particular. You see, during this rider's introduction, it was mentioned that the youngest rider is under two and the oldest rider is 93 years old! Of course, the "under two" rider is our own son, Baby C. The oldest is Millie, who also has the challenge of Scoliosis. At 93, Millie is the epitome of inspiration for all us young whippersnappers who feel a little bit beat up after a long day of raising kids or conducting business.

The next rider prompted Debbie, the emcee of the riding demonstration and owner/operator of REINS, to bring us all the way back from age 93 to age 5. In spirit, anyway. This rider suffers from Progeria, and her body is already experiencing many of the physically degenerative characteristics that typical people might undergo in their 50's. And there she was, with she and her supporters encouraging her horse to a lengthy trot to finish her part of the demo. And what a great moment to experience the synergy created by an engaged audience and a rider who is so genuinely and rightfully proud of her achievement.

I realize that Hippotherapy (the benefits of riding horseback) lacks any data to support its use as a "remedy" for what ails people. We can talk about core strength and balance, we can observe the bond that develops between some horses and riders. We can call the riding routines "life skills" or "positive reinforcement". All that is predictably clinical, despite the decidedly non-clinical setting, and utterly belies our lack of imagination in understanding what really happens at REINS.
This is a community. No one gives a darn about disabilities here. Nobody is trying to cure anyone of anything. I don't think "warrior mothers" like Jenny McCarthy would find very fertile ground here for convincing people that autism is some sort of tragic circumstance. Everyone loves horses here, as well as people who may not be just like themselves. Work gets done. Funds are raised, without a lot of pomp and circumstance but with the help of the local community. Young, angst-ridden adolescent volunteers who harbor the thought of complaining about the heat and the dust are silenced by self-comparisons to people who have much more than today's climatic conditions to worry about. Adults and children alike find a deep-seated thrill in their mundane tete-a-tetes with their equine compatriots.

Even Dads who are feeling pinched by the responsibilities of raising three sons and trying to navigate a business through a difficult economic climate find reasons here to spread some Sunshine!

PO'd at PETA

2008-09-29T20:19:00.000-07:00

In today's news, one could not help but notice the appalling new publicity campaign initiated by the radical group, PETA.
In this campaign, currently propagated via billboards in Newark, NJ, the following message is delivered:

Yes, that's right, this ad campaign chooses to associate autism with a frowning face in a cereal bowl. The entire ill-conceived concept is based on the ridiculous concept that drinking cow's milk causes autism.

*sigh*

Okay, lets begin with the "science". The brilliant minds at PETA have apparently been hearing as much as the rest of us recently in the major media about how the GFCF elimination diet can initiate a recovery from autism (hey, thanks Jenny McCarthy!). While I am not going to cast aspersion on or otherwise debate what parents will attest to as they put their kids on this elimination diet, I will take my usual position and refer you to the science. Yes, this theory has been put to the test. Here are some direct results, as well as results of some academic reviews:

J Autism Dev Disord. 2006 Apr;36(3):413-20.
Excerpt from abstract: "Group data indicated no statistically significant findings even though several parents reported improvement in their children. "

Cochrane Database Syst Rev. 2008 Apr 16;(2):CD003498.
Excerpt from abstract: "Research has shown of high rates of use of complementary and alternative therapies (CAM) for children with autism including gluten and/or casein exclusion diets. Current evidence for efficacy of these diets is poor."

Pediatr Nurs. 2007 Mar-Apr;33(2):138-43.
Excerpt from abstract: "Dietary treatment of children with behavioral disorders has had wide public appeal and been a source of controversy since the 1920's. Yet, to date, there is little empirical evidence supporting the effectiveness of dietary restrictions in treating child psychiatric disorders, in particular, autism and attention deficit hyperactivity disorder (ADHD)."

And of course the most recent study, which accentuates the risk of the assumed-to-be-harmless GFCF diet:

J Autism Dev Disord. 2008 May;38(5):848-56.
Excerpt from abstract: "Bone development, casein-free diet use, supplements, and medications were assessed for 75 boys with autism or autism spectrum disorder, ages 4-8 years ... The 12% of the boys on casein-free diets had an overall % deviation of -18.9 +/- 3.7%, nearly twice that of boys on minimally restricted or unrestricted diets (-10.5 +/- 1.3%, p < .04) .... Our data suggest that the bone development of autistic boys should be monitored as part of routine care, especially if they are on casein-free diets.

So what the he**, you may ask, is PETA doing? Have they gone mad? Well, we all know they were never sane to begin with and are basically just a charicature of an important socially-conscious movement. But they lead off their press release about the campaign with the following statement:

"In light of two scientific studies that link milk consumption to autism in children and a third that establishes that the Newark metropolitan area has the highest rate of autism among 14 regions studied by the Centers for Disease Control and Prevention, PETA has just unveiled in the city a brand-new billboard parodying a ubiquitous milk ad."

Whoa! They sure have done their homework! Or ... have they?
It took a bit of digging to come up with the two studies they are referring to. Here is the first, conveniently linked to from the PETA blog:

Panminerva Med. 1995 Sep;37(3):137-41.
Excerpt from the abstract: "Our results lead us to hypothesise a relationship between food allergy and infantile autism as has already been suggested for other disturbances of the central nervous system."

Lets discuss that for a moment. Oftentimes, we hear people in the autism community with the rallying cry "Science has ignored us!" or "Let us see the science!" I hold the opinion that the scientific method is alive and well - and generously funded - in autism etiological research. It simply has not delivered clear-cut, easily digestible results to date. This study may be a good case of that. As the authors at the University of Rome state, the results are good for the formulation of a hypothesis. They are not, and the authors never claimed them to be, conclusive.
Since the study was completed - 13 years ago - the hypothesis has been put to the test. To date, we can only say that the data do not support the hypothesis that dietary intake of casein is a causative factor in the development of autism.
Here is the second study they rely on:

Nutr Neurosci. 2002 Sep;5(4):251-61.
Excerpt from abstract: "A randomly selected diet and control group with 10 children in each group participated. Observations and tests were done before and after a period of 1 year. The development for the group of children on diet was significantly better than for the controls."

First off, this was a single-blind study. Secondly, the control group and subject group had all of 10 kids each. The general research/treatment community was willing to set this one aside 6 years ago when it was released, so its hard to figure why PETA wants to dredge it up now.

Or is it?

You see, it is really quite clear what PETA is doing, and there is a word for it - EXPLOIT:

ex·ploit [ik-sploit]
1. to utilize, esp. for profit; turn to practical account: to exploit a business opportunity.

2. to use selfishly for one's own ends: employers who exploit their workers.

3. to advance or further through exploitation; promote

Yes, PETA is engaging in exploitation of the autistic community to serve their needs, to further their agenda, to "use selfishly for one's own ends".
As the father of two boys on the autism spectrum, I am deeply bothered by the callous exploitation exhibited by these self-righteous people.
How, as an autistic adult, would you feel as you saw this ad for the first time? Would you feel marginalized? Degraded? Would the "sad face" build your self-image, or chip away at it? Would you feel like a valued contributor to society, or a "burden" who need not exist were it not for kids drinking milk?

Perhaps in a future post I will get into the issue of how bogus the New Jersey prevalence figures are in relation to other states (an important aspect of their ridiculous campaign). Or maybe I'll jump into the dubious - no, discredited - nature of the opioid excess theory of autism that the entire casein house of cards is built upon. Or maybe I'll just discuss the basic concepts of causation v. correlation. In any case, I cannot reach nearly as many people as the fools at PETA will this week in Newark. Shame, PETA, shame.

I dunno, folks. At times it seems that the idiocy gets ahead of us and I feel like not much we can do will really create a better world for autistic people. I hope the Autism Hub, ASAN, and like-minded folks will remain aware of travesties such as this PETA embarrassment and provide a united front to counter open bigotry of this nature.

More on this topic from Kristina at Autism Vox and from Orac at Respectful Insolence.

Jenny MCCarthy and Autism Acceptance

2008-09-25T20:31:00.000-07:00

A couple of days ago, Orac enticed us with an offer:
Ask Jenny McCarthy a Question!

(Steve Raises Hand, a la Horshack of "Welcome Back Cotter" fame)

"Ooh!, Ooh!, Ooh!"

I have a question for Jenny McCarthy! I guess this one applies to Jim Carrey as well, as he has assumed the fatherhood role for young Evan McCarthy.
(Jenny and Jim are Mom and Dad. Good for them, and I wish all three the very best in all things. But I certainly wish Jenny and Jim would stop promoting the ideal that Toxic Autism is Bad.)

My question is this:

"Jenny, have you considered the impact of your publicity-driven actions on the future self-image of Evan?"
(Consider: Green our Vaccines rally, Oprah Winfrey appearances, Generation Rescue Board of Directors, etc)

Let me explain why this is of concern. Evan is a growing boy. If we take you at your word, Evan is a recovered autistic. He was autistic and now he is not autistic - he is typical. Through your actions as a Mother Warrior, you have pulled your son from the brink of the abyss, and he is now free to pursue his life's dreams as a non-toxic, normal person. Okay.
So what happens - now that you have staked your professional reputation on his being absolutely "typical" - when he has some struggles at school? If you take him to a birthday party with other kids his age and he is sitting off to the side, not really interested in their collective social excitement? Or maybe a kid approaches him and asks what class he is in, only to be met with a very animated stream-of-consciousness about his preferred topic of conversation. In that same setting, maybe the noise and excitement are a touch disconcerting and he begins to jump-spin (a combination of jumping and spinning that is somewhat "dangerous to self" and nearby "others").
You see, Jenny, most of us parents of kids who are on the autism spectrum have little ways of dealing with situations like this that fully allow for our kid's neurological/perceptual uniqueness while capitalizing on "teachable moments". Jenny, we can do this because we have not staked our personal dignity or professional reputation on the expectation that our child will not exhibit autistic behaviors.
As an example, just today - after work - I myself took J to a local pizza place for a classmate's birthday party and managed the jump-spin and sitting-alone scenarios. I then took him to soccer practice where the sensory/lying down drive was dominant and lack of desire to play with the team was blatantly obvious. All this with a boy who most casual observers would consider to appear as "recovered" as Evan may be.
Fast forward a few years. Evan is really growing up now. He's hitting puberty, and is contending with all of the challenges that come with it. Now he is really expected to fall in line with his peers. Pack mentality rules. Awkward or non-conformist behavior is met with derision. Especially for a kid with such high-caliber social parents. Especially for a kid whose Mom has been a professional "Babe". How is Evan going to be dealing with the wrinkles of his (formerly) autistic neurology then? Will his very publicly announced transition from the world of "autism" to the world of "typicality" (as documented by his "warrior mom" in books, magazines, and TV shows) cause any consternation at that point in his development?

I don't know the answer to any of these questions. I'm not really expecting to get the answer here. I do ask the reader of this blog to consider the term "autism acceptance " in the light of this post. This term can be reduced down to admitting that a diagnosis is correct, but can also be utile in considering the overall set of factors that influence quality of life at various points in a person's development. I wish Jenny McCarthy had factored in this second definition before deciding to exploit her beautiful son, Evan, as the First Child of autism recovery, and thereby set the stage for intense internal conflict in him for years to come.

The Mess Monster

2008-09-21T20:19:00.001-07:00

I returned last night from a 6-day business trip to West Palm Beach, Florida. Having stayed at The Breakers for the duration, one would think I would be well rested and rejuvenated. Not so. I suffered family pangs while I was gone, and was generally unable to relax knowing that my wife was at home trying to manage the lives of three little handfuls (two of them not so little anymore) single-handed.
As Dads have done for untold generations, I took great pleasure in trying to find a few trinkets to bring home for everyone in the family. For Baby C, I found a pop-up hand puppet of a raccoon in a lidded trash can. Great fun for the little guy. T got a little treasure chest with three Pirate puzzle games. Arrrr. J - our little bibliophile - got a book. Keeping in mind that October is just around the corner, I got him "13 Monsters Who Should Be Avoided" by Kevin Shortsleeve.

J was enthralled as I read him the book this morning. He had laughed his way through the rhyme about the Three Toed Albanian Snoring Sock Bats, who nest in our sock drawers and are generally responsible for all the missing socks of the world. He gasped as I read to him about the stinky Sissyfoos that dines on wet sneakers and unlucky toads. He stared wide-eyed at the illustration of the Doohickeemajiggers - spidery little robotic creatures that are so complicated that they are born with instruction manuals. Unfortunately, they can't read, so "They mix up their parts till the mess is so muddled, they end up cross-eyed, confused and befuddled."

But the best moment came when I read to him about the Mess Monsters:

Mess Monsters, in general, should not be let in,
Because once inside, Mess Monsters begin
To tip every lamp and spill every mug,
Tilt all the paintings and rumple each rug,

Topple the trash can down the front stairs,
Replace every light bulb with sticky peeled pears,
Load the dishwasher with sport-fishing gear,
Drape soggy spaghetti from the brass chandelier,

Paint pudding-pie murals depicting a pig,
Stick bubble-gum wads in your aunt's silver wig,
Cut paper dolls out of your dinosaur poster,
And pour maple syrup right in the toaster.

Then the Mess Monster will suddenly shrug,
Say, "Sorry 'bout that," and give you a hug.
But before the Mess Monster can help you to clean,
He leaps on his scooter and flees from the scene!

After reading this, I turned the page (to the one about Snurps that eat parked cars), but J stopped me and turned the page back. He looked from the words to me. Back to the picture, then back to me. "Daddy," he said, "is Baby C a Mess Monster too?"
(Anyone who has seen C in the last 4-6 months would answer a resounding "YES!")

And to think I left my wife alone with a Mess Monster for 6 days!

Autistic Women

2008-09-20T22:36:00.000-07:00

I read an interesting piece in the UK's Telegraph today on the topic of autistic women titled "Autistic Women: A Life More Ordinary". The author of the article, Charlotte Moore, is mother to two autistic sons and, as such, brings some autism-related life experience to bear in her brief synopsis of autistic females.

I can state with certainty that my understanding of autism - formed from the perspective of a non-autistic parent - has been enriched greatly by having met and gotten to know Bev Harp, an autistic woman and all-around great person. Likewise, I have seldom been more moved to consider my own shortfalls of understanding than I am when I spend time with Peyton Goddard. I have also had the great pleasure of getting to know Camille Clark in person.
Online, I have also benefitted from exchanging ideas with Michelle Dawson and Amanda Baggs.

I have not spent much time considering the skewed male:female ratio in terms of autism. In light of that, I found the following paragraph from the article very interesting, especially in the context of our understanding of prevalence of autism today (and the supposed 'epidemic'):

"When the first of my two autistic sons was diagnosed in 1994, someone told me that autism was more prevalent among Jews (my sons' father is partly Jewish). This notion probably arose because many mid-century psychiatrists and psychoanalysts were Jewish, so interest in and awareness of unusual mental states was higher among Jewish families, who were therefore more likely to seek consultations for their children. Similarly, Asperger believed autism to be more prevalent amongst the professional classes, failing to see that it was simply more likely that such a parent would seek his advice. We now know that autism is not related to ethnicity, income or social class. Are we about to find that it is not as strongly linked to gender as has been supposed, that there are more autistic women out there than we imagine?"

Anyway, its a well-written but brief article that I would recommend. Read it here.

Toxicity: A Discussion

2008-09-09T11:30:00.000-07:00

Over on the daily embarrassment known as Age of Autism, editor Dan Olmstead has decided to launch a personal attack against Kathleen Seidel. In the hit-piece, he attempts to draw imaginary lines between Kathleen's career path and resulting ethyl mercury exposure, with the fact that she is the parent of an autistic person.
It is de rigeur to find this type of (poorly done and factually erroneous) attempted character assassination on AoA, as past "victims" have included anyone from respected researcher Nancy Minshew, to vaccine expert Paul Offit, to Drs. (and parents) Joyce Chung and Roy Richard Grinker, among many others.
Kev has already explained the foundational level of ineptness displayed by Dan Olmstead in writing this most recent diatribe, by explaining that the supposed ethyl mercury exposure that Mr. Olmstead has 'accused' Kathleen of never actually happened. No need to rehash that point again, as I'm sure Mr. Olmstead is appropriately ashamed of his blind leap to conclusions by now. Or perhaps not, since Mr. Olmstead seems to have made a career of this type of dot-connecting without fact-checking.

What I want to address is the common content of the comments on that post. Aside from the expected "GO DAN!" style of comments, there is a recurring theme there of agreement on something that Mr. Olmstead brought up in his attempt to discredit Kathleen.
Mr. Olmstead's piece uses the following quote from Kathleen Seidel:

"Excuse me. Did it ever occur to [vaccine mercury critics] that someone might object to having their family members labeled as inherently toxic?"

as a springboard for his counter-argument:

"Well, they might object, but that doesn't have any bearing on the truth."

And the commenters to the piece really dig in to this concept, with comments like:

"There is absolutely no logic in saying that it is offensive to imply that a child is poisoned. Poising is something that happens to someone.Poisoning is not a trait one is born with. How can you "offend" someone by stating or hypothesizing that an event happened to someone? Ridiculous!"
*****
"And "toxic" is not an insult -- it is a possible explanation which, when treated, can sometimes result in substantial improvement in quality of life -- health, social skills, cognition..."
*****
"What an ostrich attitude, construing concern over treatment of a medical malady instead as a social gaffe. I know toxic people, myself among them, and have no problem applying or wearing that label."
*****
"Is Kathleen Seidel Toxic?
Unequivocally "yes".
What else could explain her aggressive, obsessive, hateful demeanor.
Somebody toss this woman a DMSA, please!"

I had to throw that last quote in as a perfect example of what connotations the word "toxic" carries in today's vernacular.

Having read these comments, I think perhaps I can offer One Dad's Opinion - not to be confused with "the Neurodiversity movement" (if anyone has a membership list for the ND's, I'd love to see one) - on why it is so important to not refer to our children as toxic when they are not.
Toxic is defined as:

tox·ic (t k s k)

adj.

1. Of, relating to, or caused by a toxin or other poison: a toxic condition; toxic hepatitis.

2. Capable of causing injury or death, especially by chemical means; poisonous: food preservatives that are toxic in concentrated amounts; a dump for toxic industrial wastes. See Synonyms at poisonous.

This, then, is the set of parameters folks at Age of Autism are setting for our children. They would have you believe that, in the immortal words of JB Handley, "There is no such thing as autism. Autism is just a mis-diagnosis for mercury poisoning." Words that JB - founder of Generation Rescue and Age of Autism - has never retracted.

The logical extension of this statement is quite simple:

Toxic is bad
Non-toxic ("cured" or "recovered") is good

Since they also take the position that autism is condition resulting from toxicity, then of course:

Autistic is bad
Non-autistic is good

Now I'm not going to sit here and say there is nothing bad about the condition of being autistic, as different individuals experience the challenges and disabling aspects of autism in different ways and it would be foolish to sugarcoat those aspects. And it is certainly not my place to speak for anyone else on this topic. But I have a serious problem with autism being approached from a de facto position that it is a lesser circumstance.

This position requires the view that autism is inherently negative, and that elimination of the condition of autism (i.e. toxicity) is the only worthy goal. Recall that autism is defined as a life-long disorder. There is documented improvement in some young children - some even "moving off" the spectrum altogether - but no "treatment" oriented toward resolving the hypothesized toxicity component has been shown to have been more effective than placebo. So often it has amazed me that, among the parents who go down the road of hard-core buying into the "toxic child" mythology, so little thought is given to the life-long impact of their particular brand of PR on those people who will remain autistic and require community supports throughout their lifespan. The mantra seems to be, "I recovered my kid, aren't you ashamed that you haven't even tried?" Which equates in my mind to, "My kid is better off than yours because he/she is less autistic than yours".
Are these people unable to conceptualize how the "toxicity" view of autism would dictate how educator and service providers may view the individual? Imagine an IEP meeting - "How is Kim this year? Still poisoned? Oh, that sucks ... I guess we'll have to support her again. When do you think she might be detoxed?"
And let's just say that the PR machine (all style, no substance) that is GR and AoA succeeds in their very expensive and cult-like "selling" of the toxic child paradigm to the general public. What, then, of the autistic teens, young adults, and adults that are out in the community - participating as is their God-given right? Will they be met with sad looks, hushed conversations just out of earshot about the poor "toxic cesspool" that is the autistic person? How, exactly, does this world-view engender dignity for the autistic person? You know what? It doesn't. It just doesn't. And it saddens me that people like Mr. Olmstead - himself a person who is NOT a stakeholder in the autism community - devote their efforts to entrenching the public in this erroneous and harmful paradigm. And it saddens me that, as he spirals downward into the rabbit hole of quackery, bad journalism, and harmful mythology, he feels the need to try to drag good people - the latest being Kathleen Seidel - down with him.

Shame, Mr. Olmstead. Shame.

For those who may want to get a more accurate view of Kathleen Seidel's thoughts on autism, you may want to consider reading this excellent essay. It provides a roadmap for how we can aspire to view the Autistic Distinction with the dignity and respect that is so lacking on Mr. Olmstead's Age of Autism.

Governor Palin, Down Syndrome, and Humanity

2008-09-04T20:10:00.000-07:00

One way or another, barriers will be broken this year when the results of our presidential election are known in November. I cannot recall a more important time for a country to take stock of itself, determine where to go from here, and to act on that determination.

This blog has never been intended to be a platform for discussion of "party" politics. This post, though it may smack of such politics, is not intended as such.
I have stated before and I will reiterate now that I am socially and fiscally of a Conservative mindset. I realize that many of my real life and online friends do not share my beliefs and determinations on such matters, and I have been fortunate enough to have encountered some good souls who can provoke serious thought and deliberation on various topics in this arena without rancor and strife.

I do, however, draw a few hard lines. One of them has to do with abortion. This is the first reason that I am feeling pretty darn positive about Governor Sarah Palin's nomination as Vice-Presidential candidate on the McCain ticket. In case you haven't already heard, Governor Palin is the proud mother of a 4-month old boy who has Down Syndrome.

Are you aware that, according to at least one review of the available scientific literature, up to 92% of children who are prenatally determined - typically via amniocentesis - to have Down Syndrome are terminated prenatally? Do you ever wonder how close we are to having a prenatal test for autism, at least one that could determine statistical likelihood? What concerns does the possibility of such a test cause you to consider?
Perhaps Sarah Palin had an "amnio", perhaps she didn't. If she felt, as my wife and I did during all three pregnancies, that the results of an amniocentesis would not result in our deciding to terminate our unborn child, then I'm guessing she declined for health reasons. As we declined.

Regardless, we now have a vice-presidential candidate whose gender - she would, of course, become the first female VP in American history - is being, if not overshadowed, complemented by her role as the very-new parent of a child with special needs. And this role is what caused her to assert the following statement during last night's candidacy acceptance speech:

"And in April, my husband, Todd, and I welcomed our littlest one into the world, a perfectly beautiful baby boy named Trig. From the inside, no family ever seems typical.
That's how it is with us.
Our family has the same ups and downs as any other — the same challenges and the same joys.
Sometimes even the greatest joys bring challenge.
And children with special needs inspire a special love.
To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters.
I pledge to you that if we are elected, you will have a friend and advocate in the White House. "

This is music to my ears, and provides an incandescent spark of hope that perhaps, if Governor Palin does indeed become the Vice President of the United States of America, the disability community will have an important ally in Washington.

Here is One Dad's best wishes that, whatever the outcome of this political contest, Trig Palin will thrive at all stages of his precious life, and that he will touch us all and in turn be touched by us in ways that promote our ... well ... our humanity.

Go Trig! Go Sarah!

Note to readers: Please take the time to read this important post by Joel Smith - "An Open Letter to Sarah Palin".

NOW is it over?

2008-09-03T20:38:00.001-07:00

Since not all of my readers are often aware of all the scientific goings-on in the world of autism study and research, I would be doing a disservice by failing to mention the most recent important study that looked at the hypothesized link between vaccines (in this case the MMR, not to be confused with the now-defunct mercury causation concept) and autism.

More specifically, this study looked at the long-held position that (follow me here) Measles/Mumps/Rubella vaccine causes autism by creating a persistent measles-virus infection in the gut of the affected individual - termed "autistic enterocolitis" - which, in turn, causes the individual to manifest autistic behaviors, perhaps due to the opioid excess theory. This is the entirety, and half of another, of the three causation concepts being advanced in the Autism Omnibus Proceeding currently (and for the past 2 years) underway in the VICP in our nation's capitol.

To offer a brief summary, the study adds to the body of knowledge that the MMR vaccine has no relation to autism.

A couple of things make this study somewhat more palatable to the broader autism community than the numerous others that have arrived at the same conclusion. One is that a major contributor to this study - indeed half of the presenting research team - is one Dr. Mady Hornig. Dr. Hornig is (in)famous for her studies on "SJL Thim" mice in which she supposedly induced autism via thimerosal exposure. The mice literally chewed through each other's skulls, which was construed as being an "animal model" for autism. Go figure.
(Author's note: Neither of my two autistic children have attempted to chew on anyone else's skulls, including each others'. Knock on wood.)
So Mady Hornig - a veritable "celebrity" of the vaccine/autism research pantheon - is now stating with certainty that the MMR is not to be considered a culprit in autism causation. Of course, one hero of the autism/vaccine movement turning to the "dark side" as a result of this study is easy to explain away if the resulting cognitive dissonance is too great to bear. But two?

Yes, two. Rick Rollens was present at the press conference. Although his comments (which I can only reference in a limited context, as I did not have access to the presser itself) do not directly address what the study authors have found to be the most significant findings, they instead are intended to perpetuate the controversial causation hypotheses.
The following quote, a real "study finding", is by study co-author Ian Lipkin of Columbia University:

"We found no difference in children who had GI complaints and no autism and children who had autism but no GI complaints,..."

Rick Rollens' presence - especially considering his personal, political, and financial largesse in directing funding away from needed services and toward the vaccine causation hypotheses - at the press conference certainly implies a tacit approval of the findings. Few people have more personal or emotional investment in the erroneous, yet dominant, theory. As opposed to arguing against the study results, Rick redirects the topic away from vaccines which, frankly, may be the appropriate thing to do - even if it is a dodge.
Let's please remember that this is not "new" information, per se, but instead is a further confirmation of what has already been accepted by the broader scientific community after numerous studies achieving the same (via different methods) result. Here is, in contrast to the above quoted statement by Ian Lipkin, one of Mr. Rollens' statements from the teleconference:

"No longer can mainstream medicine ignore parents' claims of clinically significant GI distress," said Rick Rollens, a parent and autism research advocate.

He commended the researchers for their work but said, "This study by itself does not exonerate the role of all vaccines."

Well, no, this study doesn't exonerate all vaccines - it was not designed to do so. But seeing as the theories espoused by the vaccine/autism crowd have been centered on two theories (MMR or TCV's/Mercury), that not one shred of good science has supported these theories, that little tangible benefit to a single individual with autism has resulted from these theories, and that the whole topic doesn't amount to a hill of beans in the quality of life for my two autistic sons, I am of a mind to continue to focus on whatever will create the best likelihood of positive outcome for all autistics and not let the festering vaccine causation theories prevail.

Lets all understand that this ongoing and falsely contrived crusade against public health, regardless of what is motivating it and who is perpetuating it, is drawing crucial resources and attention away from the truly pressing issues that the autism community should be addressing. Issues such as housing for adults, societal inclusion, promoting ways and means that autistics can be impactful in a positive way in their communities and microeconomies, identifying and implementing appropriate means to ensure physical and mental health at all stages of life for autistic people. So I ask about the autism/vaccine connection - NOW is it over?

Please read here, here, and here for much more through reviews of this important research result.

Edit: And here is a link to some audio from the conference.

Full Frontal Hug

2008-08-29T21:04:00.000-07:00

One of the great pleasures of being a Dad to small children is being able to hug them. Both of my older boys are highly accustomed to Dad's Hug Economy around the house. There is the Stealth Hug, the Bear Hug, the Feel Better Hug, and numerous other variations.

Baby C, on the other hand, has never hugged me. He is dealing with some developmental anomalies that are probably causing some sensory integration issues that make my kind of hugging not so pleasant for him. It is also possible that my hugs are too unpredictable in their occurrence or intensity. Perhaps my voice or posture is not copacetic to his way of thinking. Whatever it is, its not working for him.

That's not to say he doesn't hug in his own way, though. He does.
When I want to have some time with C, or just let him know I'm interested in getting down to his physical level, I kneel and spread my arms out wide. This is a fairly universal gesture, I think. He will notice me, and cruise over to me. However, once he is approximately arm's length he will stop, rotate in place until his back is to me, and take tiny backwards steps until he backs into me. I, in keeping with the routine we have developed, will squeeze him by pressing his shoulders towards each other, will apply pressure to his crown, temples, and forehead, and will do some other deep pressure stuff and joint compressions as long as he will let me. Its not a typical hug, but C is not a typical kid.

Tonight, though, for the first time, I received a Full Frontal Hug! And once he decided it was okay, he grabbed on tight and we were able to hug for a good 12 or 15 seconds. Once I put him down, he motored right past me as if nothing had happened. But he and I both know that a small barrier has been broken. Next time I kneel down, he will have options. If he wants to back into me, then fine. But I'm ready for another Full Frontal Hug whenever he is.

And again I am reminded of one of the wonderful aspects of parenting. Its the little things - the things that no person outside the immediate dyad could ever know - that makes the parent/child relationship so special. Things like the Full Frontal Hug.

Marching to Her Own Drum

2008-08-27T11:46:00.000-07:00

I just wanted to direct you to a story from the San Diego Union-Tribune titled "Candidate Wears Her Difference With Pride".

This article tells the story of 19-year old Evan Delaney Rodgers and her quest to earn a spot on the Carlsbad, CA City Council. She is running her campaign absolutely free of any donations from anyone, an expects to do it all for less than $1000. Oh, and she has Asperger's Syndrome.

From the story:

“If you meet a person with autism,” she likes to say, “you've met one person with autism. I'm not like Rain Man, not like Einstein. I'm not like Thomas Jefferson.” (It's been speculated that Einstein and Jefferson, socially remote geniuses, had Asperger's.)
In her campaign release, Rodgers speaks with clear-eyed candor about Asperger's:
“I wouldn't be where I am today if I were neurotypical because I would have been interested in social things. Having a little autism helped me achieve my goals and not miss what most people thought I was missing out on. I'm not really 'driven' in the sense of being a wound-up over-achiever – marching to my own drum just happens to cover a lot of ground.”

What a great line. I need to remember that one as my boys grow older so I am armed with some sage, fatherly advice. And I need to remember that I got it from a 19-year old girl.

I don't live in Carlsbad, and therefore don't have a vote in that election. But if I had, I bet you can guess who I'd be voting for.

Rodgers for City Council!

What's Next?

2008-08-26T11:50:00.000-07:00

It is a situation that I honestly did not anticipate occurring in our lives again. That feeling - soon after a child is diagnosed with autism - of "Now what do we do!?"
Let me begin by saying that the operational aspect of this is soooo much easier than last time. When J was diagnosed in 2004, it took several months for us to get our bearings. I'll never forget leaving the hospital that day. Being told that J is autistic, then being handed a packet of information/local contacts/agencies, and being shown the door. At that time, I knew nothing about autism. I wrote about the drive home here.

This time, the feeling of disorientation is there again. But it is rooted in different lines of thought. Now we are very familiar with what to do, and what not to do. We're not hitting the panic button as before, nor are we organizing our family and friends into a quasi-military command structure in order to "combat" autism or "defeat" our family's new circumstance. No, we are much more accepting of the inherent good and not-so-good that accompanies the effort to raise an autistic child. More importantly, we are acutely aware of the challenges - moment by moment, day by day - that are facing our little guy. I think we can do a better job this time of balancing his needs with trying to promote the most positive outcome in overcoming some of the disabling aspects of autism. And, unlike before, he and we have a role model for success in the first few years (his older brother). And we already have a great support-framework in place (a very supportive family, real-life friends on and off the spectrum, numerous professional contacts, and an immensely supportive online community who have already provided staunch emotional support accompanied by personal anecdotes and great advice). Let me take this opportunity to thank each of you who commented on my last post announcing baby C's diagnosis, those who felt supportive but did not or could not put their thoughts into words, and those whp sent personal emails. All messages were read, digested, and appreciated.

So that leads me back to, What's Next?
In a great coincidence, the answer to that question came in a peer-reviewed, published paper approximately 10 days prior to C's diagnosis at Children's Hospital.
I cannot link you to the full paper, but here is the abstract as listed on PubMed.

The study is titled "Properties of supportive relationships form the perspective of academically successful individuals with autism", and it was authored by Dr. Jodi Robledo and Dr. Anne Donnellan, both of the University of San Diego Autism Institute. If you need more info on the USD Autism Institute, simply look at the Home Page of the Autism Hub, and you will find them listed under "Autism Hub Friends". Or, here is a direct link.
The really important aspect of this paper is that, by interviewing autistic adults, the authors established 6 factors that were deemed as being essential to their success in building relationships. It is extremely gratifying to me to see researchers intentionally positioning autistics as a primary source of experiential information, and basing their findings on these experiential factors. This is an unfortunately rare circumstance in autism research today, and the results are - to my way of thinking - all the more valuable as a result.
Before I discuss the findings and their relevancy in my family's life, a quick note about the participants. All 5 participants are young adults who have been academically successful. 3 of the 5 are non-speaking and communicate through typing. I have personally met three of the five participants, and will attest that their autism-related challenges are as significant as a researcher is likely to find.
The results of the study essentially consist of the responses of these 5 participants, and the translation of these responses into 6 categories. The participants were asked to identify 2 to 4 individuals with whom they had a supportive relationship, the definition of supportive being left up to the participant. When the data - collected via face-to-face interviews, email correspondence, published documents, public broadcasts, and phone interviews - were analyzed, 6 major properties emerged as being essential components of a supportive relationship:

TRUST

INTIMATE CONNECTION

SHARED VISION OF INDEPENDENCE

THE PRESUMPTION OF COMPETENCE

UNDERSTANDING

COMMUNICATION

Perhaps this list struck you as you read it for the first time in the same way that it struck me.
And what struck me is that it is nice to see some research-based verification of that philosophy that I have already adopted. Anyone who has spent any time browsing the Autism Hub will agree that these properties are discussed regularly, in detail, with enthusiasm, and are universally embraced as being essential components of autism "acceptance" (for lack of a more efficacious word).

So as we move forward into building a relationship with our second autistic son, we will be keeping these things at the forefront of our minds. There is no need to reinvent the wheel, here. What is called for is to listen to those who have come before (in this case, autistic adults) and emulate that which has been shown to be effective.

THAT'S what's next.

Thanks to Drs. Robledo and Donnellan for their work on this study.
Robledo JA, Donnellan AM

Intellect Dev Disabil. 2008 Aug;46(4):299-310.

A New Challenge

2008-08-15T20:01:00.000-07:00

This post is one of the most challenging for me to write. It is very difficult to put my arms around how I feel right now and even more so to find the right words to express it.

Today, my youngest son was diagnosed with Autism Disorder.

C is 19 months old, so the diagnosis is "provisional". This means that his "label" may change (within the ASD umbrella) as he develops over the next year or so. But the diagnosing clinician, who has assessed around 1,000 kids during her career, left no room for doubt as to whether or not he is on the spectrum. Both the results of the ADOS and her clinical experience paint a very clear picture.

What is not so clear, and what is so difficult as a parent of a child with autism or any number of other developmental challenges is what C's prognosis looks like. I have spent a lot of time on this blog writing about Positive Outcomes, and I can't help but dwell on the mercurial nature of that subject on the day my son was diagnosed.

Of course, we knew this about C before he went to Children's Hospital today. We knew, but we didn't know, if you know what I mean. We have seen all kinds of indicators over the past 6-8 months. At the same time, we also saw things that would indicate he is not autistic. What we, as parents, lacked is the clinical experience and the lack of bias that a professional can provide. For this reason, we have been counting the days to August 15 so we could receive a confirmation or denial of what we had been observing.

I've got some more thinking to do before I write much more on this. Feel free to comment any way you'd like on this - I welcome your thoughts and insights at this time.

When Animals Attack!

2008-08-12T20:37:00.000-07:00

This post is not about Michael Savage or JB Handley.

Though it could be, considering the title.

Instead, I must warn you that this is an entirely non-autism-related post and holds absolutely no scientific value or journalistic integrity.

When Animals Attack #1
My family is technologically challenged. Though I have learned my way around blogger, I am pretty much a rube in regards to all other things electronic. Oh, to be an electronic guru like my friends Glynn or Kev! No such luck.
So when I booked the install appointment for DSL (we currently run satellite internet due to our semi-rural location and resulting limited options), I just knew it would not go well. In the week leading into the appointment, we had one TV go down, baby C dropped our digital camera in the pool and thereby destroyed that, I found that many of my most recently downloaded songs are MP4 format which will not play in our little "gemstone" pseudo-Ipod thing, my wife's cell phone shuts itself down when she tries to dial out, and my company's servers are full and requiring a PowerVault for expansion (very expensive). DSL must run through phone lines, as does our satellite TV and our alarm system. Though I was assured these would not conflict, it took 3 hours of a tech being in my home to verify what I knew already - that we are living in the technological equivalent of purgatory.
During the Tech's visit, my wife noticed the dogs barking excessively on the back patio. When she went to investigate, she noticed the sound of water running, or spraying. Upon closer investigation, it was not water ... it was a rattle ... Or, to be more specific, Rattlesnake! After she hollered for attention, I helped her drag the dogs in the house (we have really big dogs and they really wanted to play with the snake) and I prepared myself to do battle with the leviathan.
Okay, as an aside, I really don't like to kill snakes. But Rattlers are territorial(they will return to the same spots repeatedly), and I happen to also be territorial (I return to my home each night). It is my responsibility to; a) protect my children from harm, and b) not kill myself in the process if it can be easily avoided. This means my options - since I have no way of picking up and removing a rattlesnake - are limited. I can't let it get out of my sight and wonder every moment if my kids or dogs will encounter it, so I have to kill it. To spare you the details, I accomplished my task and am feeling not very good about it. I am currently loking for a snake-catcher so that next time I can remove the snake instead of killing it. Maybe I should have called this post, "When Humans Attack".

The point here is that all of this happened while the DSL installer was here. He kept peeking outside to check on my raging battle with the snake.
When he left ... hours later ... defeated by the curse of the D family's electronics ... I told him, "Hey, lighten up. Its not your fault. This install was doomed before I even ordered it! You see, when we try to upgrade technologically around here it not only doesn't work, but we also get attacked by wild animals!"

When Animals Attack #2
You'd like to think the story is over at his point, right? Ummm, no.
The snake thing happened last Wednesday. Fast forward all of 2 days, and my wife has the boys down by the pool. My wife is an animal husbandry aficionado, and has not yet learned (as we cynics have) that so-called "lesser" animals can be safely ignored. As a result, she was rescuing a drowning bee from our pool. Yes, picture an exhausted, drenched bee being mercifully lifted from the cold, deathly, chlorinated clutch of the pool by L's graceful hands. Then picture the little ungrateful bastard stinging her! (Sorry Andrea for flinging epithets at the bee, but read on prior to passing judgment please).
To shorten a long story, by the next day (Saturday) her finger was turning black and her hand was swollen to a painful point. I took watch over the boys while she went to Urgent Care. She returned 5 hours later with a splint on her hand (extending up to her forearm), gauze on her opposing wrist to cover the IV tube they left in her arm. You see, she had undergone a severe reaction to the bee sting and required IV antibiotics, and she had to return the next day for another round. They had to cut off her ring due to swelling. Now she appeared to be some android-mom.
So this was a big deal! And it was not directly related to any technology installs or upgrades! Unbelievable.
She is ok now, but apparently this reaction will get worse with each ensuing bee sting. And never mind that our middle son, T, also reacts strongly to bee stings, and that bees hate T. They have some sort of bee-nation vendetta on the poor kid, and typically harass him at every turn. He's had twice as many bee stings in 5 years as I've had in my life, poor kid. So we are planning to move to Nome, Alaska where it is too freakin' cold for bees to live.

When Animals Attack #3 - Prehistoric Version
Endless thanks go to Grandma and Poppa for taking our two oldest sons to Colorado for a week-long adventure this summer. Little did we know that our pattern of animal attacks would also occur there!

What I Did On My Summer Vacation

2008-08-11T20:08:00.000-07:00

Hi!
I've missed you, readers - all 17 of you!
You may or may not have noticed that I have not been around much lately in the blogosphere. I was on my summer vacation - a respite from blogging and debating and advocating and conferencing and all that.
Not that it has been quiet - far from it!
I have been a keen observer, though. All kinds of things have been happening this summer in the autism communities. Some I have silently cheered, others have left me cringing and wondering when the madness would end. I do rest assured that the efforts I see on an ongoing basis in the more stable, sane corners of the world of autism are working to the benefit of my son and many others like - and not so much like - him.
Taking a step back for a while has also helped me to realize the importance of the message we try to get out here on the Autism Hub. People need to hear us - autistics, parents, professionals, researchers. When I see the sheer volume of oppressive or misguided messages that exist out there, I am resolved to continue to speak to the issues.

Now for a mini-Snippet (this becomes Snippets 3.0):
About an hour ago, J was rooting through the cupboard looking for something to eat. I peeked in there and noticed a bag of sunflower seeds - one of my favorite snacks. I buy the shelled type, as I hate shelling them myself. I grabbed about 4 or 5 seeds out of the bag and encouraged J to try some. Anyone who knows J also knows that he is extremely limited in his diet, and has very powerful sensory reactions (gag and vomit) to a huge range of textures. This is something we have only last week received funding approval to address via OT. But as he matures he has at least shown a willingness to try new things.
So I asked him to try the sunflower seeds, and promptly put these 4 or 5 on his tongue before he could object. I saw the familiar facial expression change, and he began to retch. He spit out the seeds and backed away. Knowing how these things go, and constantly feeling guilty for having to push and push for him to expand his diet in the face of real challenges, I told him I was sorry.
His response?
"I ... I just .... don't want them to grow in my belly!"
Riiiiight. Sunflower seeds.

Just when I think I know why he's doing what he's doing, I am proven wrong again.

New Depths of Idiocy

2008-07-22T20:43:00.000-07:00

Okay, I am finally peeved enough about Michael Savage's inane rants about autism over the past few days to invest a few moments' time in writing about it. The fact that this has been discussed exhaustively elsewhere bears no inhibiting influence on my need to write about it - I need to get this off my chest and move on.

Perhaps I have been slower to react to this due to the fact that I have listened to Michael Savage's talk show over the years. I have a lengthy drive home, and for the sake of diversity I often change up the listening material I garner from the radio. Someday I hope to be able to afford these products and therefore to while away the car time in a state of continuing-education bliss. In the meantime, I have spent too many hours listening to the likes of this blowhard.

So when I initially heard about the controversial statements he had made, I said to myself, "Self, this is no big deal. Savage insults somebody at this level of magnitude virtually every day. Its his shtick, nobody will pay attention to this garbage. Plus, if you put virtually anyone in front of a microphone for three hours a day, every day, foot will insert into mouth at some point."
Self was wrong. When Savage went on his little diatribe about autism diagnoses being a fraud, a play for the welfare of the state, the autism community and the greater disability community came unglued. Deservedly so.

So, Michael Savage went into damage control mode. Or at least his deranged little version of damage control, which reeks of conspiracy theory, paranoia, and a complete lack of respect or understanding of autistic people and those who love them. I maintain that Ben Stiller is a modern-day comic icon due to his ability to play roles that just make us cringe to watch. Witnessing Savage's self-inflicted, ego-driven tailspin was every bit as cringe-producing as anything Stiller has acted out on camera.

Though I missed the Talk Show Tour de Farce that occurred last night as a means to defuse the situation, I did tune in to The Savage Nation for the last time today to hear this guy sputter his way through what is hopefully his Swan Song as a radio personality. I was utterly fascinated to hear him spin his web of obfuscation and red herrings as a means of deflecting attention from the ugly truth of his bigotry on this topic. Here is how the reasoning goes:

Michael Savage believes that the APA, the AAP, and Big Pharma all conspired to have the diagnostic criteria broadened in the 90's. This was done in an effort to promote the sale of more SSRI's (anti-depressants, anti-anxiety).
Pediatricians are envious of other doctors, such as plastic surgeons, due to the disparity in income (does anyone see echoes of anti-vax sentiment in these statements, hmmm?). "They", meaning the AAP, therefore conspired with drug makers to invent this new Dx so that both groups could increase their revenue and profit margins. (Apparently Savage is not aware that pediatricians are not involved directly in the diagnosis of, or treatment of, autism).
Parents are vacuous, drooling, knuckle-dragging, self-centered morons who buy this line from the aforementioned triumvirate and submit their kids to a parade of narcotics in the name of controlling their behavior. These same parents take no responsibility for the behaviors of the kids they brought into the world, allowing them to scream and carry on. Nothing a good beatin' wouldn't solve, right Dr. Savage?
Do you get the picture he is painting? As I listened today, he had the gall to say (and I am paraphrasing - this is not a direct quote):
"You should be lauding me as a hero, not reviling me - for bringing this subject to your attention. I am the defender of the defenseless!"
Can you believe this guy? He actually discounts an entire category of people, is excoriated for it in the national media, then tries to recast himself as some sort of martyr who only has the kids' best interests in mind!

Most readers of this blog (all 17 of you) have the critical thinking skills to know a Purveyor of Woo when you see one, right? Well, as further example of Michael Savage's debased version of critical thinking skills, let's just examine a few of the "headlines" from MichaelSavage.com, shall we?

BREAKING HEALTH NEWS
The Life-Saver Heart Surgeons Never Tell You About
This 23-cent miracle could save your life!
***
TURN A $200 INVESTMENT INTO $1 MILLION
***
OUTRAGE!!
Billion dollar drug company found a cure for cancer ... and TOLD NO ONE!!!
They hid the cure to sell you more drugs!
***
(or, perhaps most telling of all...)
PROTECT FREEDOM OF SPEECH!
Support the Michael Savage Legal Defense Fund
(Donations are not tax deductible)

Does this give you an idea of who we are dealing with, and why I assumed the whole thing would receive no airtime whatsoever? Nobody really takes this guy seriously, or so I thought.
I truly became outraged only today when listening to this bigot (as opposed to observing the commentary on the internet) made me realize that many of his listeners will actually buy into and support this line of crap. Autism is known as "the hidden disability", and its subtle presentation in many people can cause extensive problems in day-to-day interactions. My friend, Bev, is the best I know at capturing this aspect of autism and presenting in a fashion that makes it easy for people like me to understand. She exquisitely and poignantly describes some of the challenges and issues that my son will be facing as life progresses, and thousands of others like him.
Shame on Michael Savage for using his bully pulpit to try to make life more challenging for my son. Shame on him for discounting the struggles of autistic people. Shame on him for ignoring the existence of autistic adults (they're not all little kids, ya know?). Shame on him for scoffing at the need to accommodate and support people with special needs. Shame!

On Support

2008-07-21T19:00:00.000-07:00

I just read a great column in the Washington Post by Ann Bauer, and I wanted to share it with you.

Please read the article in its entirety here. You will need to register (free) in order to access the page.

One of my main goals in keeping this blog and participating in online and real-life advocacy efforts is to try to promote the concept of supporting autistic people. I remain immensely dismayed by the overwhelming occupancy of cause and cure issues in the national rhetoric on the topic of autism. It is far too often that autistic adults and those who are transitioning into adulthood are ignored - they are victims of the autism community's unnerving inability to move beyond the vaccine and mercury causation belief systems. These belief systems pigeonhole the range of discussion and seemingly override most other concerns within the community. These belief systems result in a worldview that narrows the definition of "support" to a set of medical interventions sold to parents with still-young children. To put it in a different way, one a friend recently mentioned, the broader autism discussion has been "framed" - the narrative has been set in the public's mind - to imply that all autistics are young children who are the victims of their toxic environment.
One unintended result of this misappropriation of ongoing focus and energy on the vaccine issue is that it inevitable draws resources from known areas of shortfalls. One such area is aiding young adults with their transition into adulthood.

Let me give you a quote from Ms. Bauer's piece:

"My grown son has autism. And while I wouldn't trade him -- the person to whom I gave birth -- for any other, I wish that his disability were as recognizable as Down syndrome and that we, his parents, were more effective at helping him achieve a satisfying life. Right now, we're flummoxed by the issues that arise as a child with autism veers into adulthood: higher education, employment, independent living, romance. In all these areas, family members of those with Down syndrome have figured out a cohesive, workable system of support."

I think Ms. Bauer hit the proverbial nail on the head. I think she has voiced the concerns that parents of adult autistics have been asserting for a long time now. Is this situation improving? I certainly hope so, but obviously not at a pace that has helped Ms. Bauer's son.

Another quote:

"Third -- and most important -- they have carved out a place in society for
their children. It's a hackneyed myth that people with Down syndrome are
uniformly happy, but it is true that they have the capacity for joy and that
their community has ensured they have a breadth of options -- career,
marriage, dignity.

This is what we who love people with autism must do"
Thank you for that, Ms. Bauer.
You see, I have long wondered what happens when the last biomedical treatment
has been tried, and the resignation sets in that autism truly is a lifelong disability.
Or when a child who has been held out in public as being an example of a "cured",
or "recovered", by his or her parents has problems as life's stages unfold. Problems
that he or she is not "supposed" to be having.
Well, hopefully those of us who have been working towards societal acceptance,
who have been shooting holes in the "autism is worse than cancer" mindset, who
have decided that respect and dignity freight more effectively in autistics' lives
than panic and pity, hopefully we will have made enough of a difference in
society that those kids, too, can pursue their individuality in a way that preserves
their happiness and sense of fulfillment.

So how do we go about that? How do we improve services and life transitions for
autistic people? In an interesting parallel, a really good post hit the Autism Hub today
by Joel Smith on that very subject. In it, Joel - an autistic adult himself who has the strength
of experience behind his words - spells out specific areas on which supporters and
educators of autistics can focus for the most positive impact. Please give it a read.

Ann Bauer and her son. Joel Smith and the Autism Hub. My son J. Let's keep writing our
own narrative.

Note: Apologies for the formatting problems with this, and other, posts. Blogger's software is
just abysmal when it comes to basic formatting.

The Importance Of ... Postcards

2008-07-08T20:14:00.000-07:00

I have written from time to time on the importance of "community". Community takes many forms, and in the autism vernacular is used in many ways, some as cold and unfeeling as a word included in a clinical calibration of goal establishment, such as "subject will spend 45 minutes per day, 5 times per week, in a community-based setting".

Sometimes, when I am applying "real" autism stuff to our little corner of the autism world, I need to get my arms around how terms or circumstances apply in our life - how does something like "community involvement" or any of its variations play out in our family dynamic?

To answer this question, I will use a minor occurrence from last Tuesday. You see, last Tuesday J received two postcards in the mail. Ask yourself the last time you received two postcards the same day! Heck, when is the last time you received one postcard?

The first postcard is from J's kindergarten teacher. Now, please be aware that Jason is done with Kindergarten. He graduated. Just ask anyone who lives around here, and they know, since J told everyone he saw - very loudly and at the expense of any other greeting, "I graduated Kindergarten!" - for the last 3 weeks.
The teacher, Mrs. D'Nealian, was simply one of the most perfect people that could have come into J's life at the time she did. Mrs. D'Nealian runs a tight classroom, with lots of rules. Mrs. D'Nealian has all of her rules in writing, at eye level, all over the classroom. Mrs. D'Nealian uses very concrete ways to help young learners identify good and bad behaviors (such as the "VIP" chair), Mrs. D.Nealian welcomes parents to be involved in the classroom, and also welcomed a full-time aide for one of her students (that would be J). For perhaps the greatest example of the type of things that occur in Mrs. D'Nealian's classroom, read The Best Story Ever!. Here is the back of Mrs. D'Nealian's postcard to J, probably written on a plane somewhere between here and Chicago:
(Postcard has been cropped to protect personal information. It is signed, "Love, Mrs. D'Nealian")
Is it just me who is struck by the importance of this type of small, simple action on the part of this teacher? Please keep in mind that Mrs. D'Nealian has never had an autistic student before. She is a general ed. teacher, and J had a mainstream placement for Kindergarten.

And, truth be told, Mrs. D'Nealian is one of a long line of perfect people who have entered our lives as a result of being part of J's "community". Some examples:
J's first therapist just sent us pictures of her new baby, still in touch after moving away two years ago.
J's second therapist had both of my sons walk down the aisle in her wedding. That was the day that J took a bite out of the wedding cake. The bride's response? She laughed the loudest of anyone.
J's third therapist is a lasting friend, and even gave our other son, T, his first fish (named Tony).
J's fourth therapist is also a lasting friend, and is the source of one of our great dogs, Marley (hey, there seems to be a pattern developing here.)
J's fifth (and last) therapist weathered some storms of defiance from a newly assertive J with a stiff upper lip, and still took the time to come see the Autism Hub presentation in January.
J still gets mopey from time to time and mentions that he misses N, his former SLT.
J's Special Ed Coordinator at school has proven to have his best interests in mind, and even took it upon herself to start a district-based Autism Parents group for the purpose of sharing information and putting together some simple social activities for our kids (such as an Easter Egg hunt).
J has had some wonderful aides at school, who have been by his side through much of his period of positive development over the last two years of his full inclusion at school.
J's therapeutic horsemanship teacher has also become his swim instructor, and she and her sister are also housesitters for us now. She also is working in the same capacity with Baby C now (Yikes! Don't ask about that yet).
I know I am forgetting some people here, there have been so many that have been a positive force in our family's life.

They don't tell you this stuff at the time of diagnosis, do they? They don't tell you all of the good things that come along with the challenges and difficulties. Maybe they should. It is my understanding that some parents of children born with Down Syndrome are given a "Congratulations" gift bag on the birth of their child. How would autistic children benefit if the same were to happen with our kids?

Of course, I mentioned at the beginning of this post that J received two postcards that day, and leaving out mention of the second would be a travesty. You see, J's Grandma and Poppa have been the most impactful on J's life of anyone. From simply accepting him for who he is and all the foibles that come along with him, to dedicating themselves to taking both older boys on a surprise "adventure" every Saturday that they are in town (they are part-time residents of our area), to the big trip coming up in a couple of weeks. Grandma and Poppa are taking our two older boys to Colorado, without Mom and Dad! Its a big adventure!
Grandma and Poppa know J and T are nervous about their biggest adventure of all. Grandma and Poppa know that J loves trains, and that he will be excited to see one in Breckenridge. Grandma and Poppa know J responds well to things that are written down and is able to reference images easily. Grandma and Poppa are perfect grandparents for J and T.

Perfect.

Back to 'Reality'

2008-06-29T20:27:00.000-07:00

It is Sunday evening, and the clock is ticking on what turned out to be a very heady week. Between one radio interview, one television interview, one interview for a documentary in progress, three presentations, and a panel discussion, this week turned out to be steeped in engaged and fascinating discussion and action. And now, after a weekend of hanging out with my boys, picking fresh fruit from the orchard, swimming, taking the dogs for long walks, blogging as a means of processing all that happened this week, I feel refreshed and rejuvenated. I also feel encouraged by the response our actions garnered this week in the worldwide autism community - both online and in the live local community. I am encouraged by the communication I am having with other Hub bloggers who would like to see similar events take place in their locales.

But, as so often happens in life, I soon came across something that reminded me that there is a lot of work left to be done.
Harold Doherty is the father of an autistic boy named Connor. Anyone who has read Mr. Doherty's blog will recognize Connor as the vibrant, tall, active young guy in many photos and videos. Mr. Doherty is an involved, doting, loving father as is plain for anyone to see. He also is a hard-working advocate for autism services - in particular, Applied Behavioral Analysis - in Eastern Canada.
So what, then, would motivate Mr. Doherty to write the kind of offensive, utterly pointless blog post that appeared on Facing Autism In New Brunswick today?
In the post, he first takes some potshots at Dr. Roy Richard Grinker and Dr. Kristina Chew ("some professors of cultural anthropology and classical literature") by virtue of assigning to them a position that neither has taken. Mr. Doherty claims that they

"...believe ...[that]... there are no environmental causes of autism and there is no autism epidemic. ALL of the dramatic increases in the numbers of autistic children and adults are due ENTIRELY to the definition changes in the DSM and to diagnostic substitution."

This statement is patently and verifiably false. But not only does Mr. Doherty create a false position for Dr. Grinker and Dr. Chew, he also fails to even provide a decent summary of the evidence-based reasoning that they and so many others have used to determine that any comparison of today's autism prevalence figures to those in the not-too-distant past would be flawed and mostly useless. Even more egregious is Mr. Doherty's failure to point out why people such as Dr. Chew and Dr. Grinker - themselves parents of autistic children - choose to eschew terminology such as "epidemic". I can't speak for them, but I suspect it may be that they understand this type of rhetoric to be harmful to autistic people.

Having established in the first paragraph that this particular blog post will be yet another "hit piece" against 'neurodiversity' and anyone associated with it, Mr. Doherty goes on to underwhelm us with yet more evidence of his slippery slope into autism quackery. Let's select a few words he uses in his effort to convince the reader that epidemic-panic is justifiable:
"mercury", "lead", "pesticides", "exposed", "increasingly toxic bath", "triggers".
To state this another way, Mr. Doherty must convince you that there is an autism epidemic in order for you to buy his premise that an elusive "trigger" is causing all of this destruction. And, to establish this premise, he uses an ad hominem attack against people who disagree with him.

Dr. Grinker has applied his accumulated knowledge of autism study in numerous cultures and within a historical context as a means to help us understand some of the more vague and subtle factors that may be influencing prevalence figures. Mr. Doherty dismisses this body of evidence with the angry stroke of a key. Dr. Chew performs perhaps the most complete and thorough review to be found in the world today of day-to-day developments in autism media, research, and real life communities. Mr. Doherty huffs and puffs as a means of discrediting her careful, thoughtful commentary. Both Dr. Grinker and Dr. Chew are parents of autistic children, and have been so for longer than Mr. Doherty. Both have chosen to emphasize their child's strengths over deficits, and this is where they and Mr. Doherty diverge. That is where many of us and Mr. Doherty diverge.

Mr. Doherty goes on to summarize his rant by citing his pet term, the "Autism Knowledge Revolution". And yet he offers us no new knowledge, not even any original thought on the "epidemic". Perhaps he really means the "Autism Bluster Revolution", a battle front which he has engaged for quite some time now.

What amazes me sometimes, and was one reason for writing this post, is the ongoing spite in the autism community online. I was first "singled out" by Mr. Doherty one year ago, after I attended and blogged about my first University of San Diego conference. At that time, I was attacked for discussing the difference between "deficit model" and "dynamic systems model". I still recall being stunned by someone taking a negative view of what I considered to be a very appropriate and complex approach to understanding and supporting autistic people - especially those who have serious communication impairments. (Link -read the comments) Now it is a year later, and nothing has changed.

I also realize that I, and the Autism Hub in general, probably gained more than a few readers due to the exposure that was generated last week. It is important that people understand the range of mentalities that exist in relation to understanding autism, and people such as Mr. Doherty clearly approach the whole thing from an entirely different angle than I do.

So I will make the same offer again that I have numerous times in the past - to have Mr. Doherty engage in a calm, respectful discussion on any of the various points of disagreement. I'm not expecting a different result, but the offer is there for the taking, as always.

Aside from that, my return to "Reality" has been as discomforting as it has been ... expected.

Inadequate Summary, Part 2

2008-06-27T20:18:00.000-07:00

In my first conference summary, I wrote about the morning before the presentation and the presentation itself. I left out at least 100 anecdotes, but the gist is there.
Later that day, we were scheduled to do a breakout session for 90 minutes. And to close the conference, all speakers were invited to be part of a panel discussion.

First, let me finish relating a bit about Peyton Goddard.
During the presentation, we were each to choose subject matter that was important to us and relevant to our understanding of the value of the Autism Hub community. One thing that was quite profound to me was the compelling difference of views of autism that are embodied by the Hub's overarching philosophy versus someone who could actually take the life of a child, as happened to Katie McCarron. I am deeply respectful of Katie's family, especially having gotten to know her grandfather a bit, and I wrote to ask him permission to talk about this during the conference. Mike McCarron gave me his blessing.
On that topic, I chose to read Mike's Open Letter to the Autism Hub, followed by a moment of silence to honor Katie. What I didn't realize, mainly because I never looked up from Mike's letter as I read it for fear of being a bit overwhelmed by 200 stunned, silent pairs of eyes on me and the emotion of trying to grapple with the loss of a precious little girl, is that Peyton had been unable or unwilling to remain in her seat while I was reading. She had moved to the edge of the theater, perhaps even left for a bit.
(I said in my last post that I would talk about what Peyton wrote if she granted permission to do so. Today, she gave me permission via her father, Patrick).
Fast forward to the moments before we were to begin our "breakout" session. Peyton was in the auditorium again, in the front row typing a message. She finished typing and then immediately left. Her mother had transferred her words to a slip of paper, which she gave to Estee. She told us that Peyton had written the message for Estee and Bev. Consider the subject matter I just related to you when reading Peyton's words:

"Queer is equated to fear and pity. It should = Love."
Seriously.

Peyton also wanted us to know something she has said at an earlier time, but is also relevant to the content of the conference.
"We need to stand on each other's shoulders in order to reach our common goal."

I hope you are now getting a better feel for why I am referring to these posts as 'inadequate summaries'. How am I supposed to impart to you how all of this felt as it occurred, moment after moment, all day long? I can't do it. I don't have the words.

Okay, so back to the breakout. Our morning presentation ended at 12:30 (...sorry, Jodi, I know we were supposed to be done at 12:00. But we were kind of on a roll at that point). Lunch was one hour long. At 1:15 the five of us convened on stage to admit to each other that we had nothing for the breakout. We were done, we had exhausted our repertoire of videos and slides and anecdotes. But wait! James had a great video we hadn't shown - Belong. We would play that to get things going. And Bev had a slide show we did on Tuesday's breakout - Myths about Neurodiversity and the Autism Hub (good stuff). Estee has a chapter in a new book, and she would do a reading. Camille and I would, well, um, we would lend support.
We made it through James' video and as Bev's slideshow went on, the audience and us Hubbers began a dialogue. Long story short, Bev never got the chance to finish her Powerpoint. What happened, instead, was a fantastic discussion covering all kinds of topics. I want to point out in particular that this breakout group had just sat through a long, 2-hour session with us and opted to come back to interact with us some more. I wish I had taken notes during all of this, as the discussion was deep and important. A round of lattes and slices of lemon loaf would have made this feel like a fireside chat. It was really refreshing, thought-provoking, and productive. Thanks to that small group of people for selecting our breakout.
I need to take a moment here to also acknowledge and thank HollywoodJaded for her attending the conference and for her overall support of all our efforts. HJ is one of our Hub webmasters, and none of this would be possible without hers and Dave's efforts to keep a good thing going. HJ also took some pics, and I'd like to use one to segue to the next session - the panel discussion...

A bit of lead-in. I worked in the weeks before the conference to increase the attendance of autistics. Dr. Anne Donnellan and Dr. Jodi Robledo worked with me to ensure that a minimum of obstacles existed for autistics to attend. I then asked Ari Ne'eman to help me spread the word that at least one "Autism" conference had every intention to include "Autism". Though I hope we do better next time, several autistic folks did attend. I'll keep to a first name basis for now and say that Steven, Lauren, and Sara were the attendees. They had attended the entire conference, but only in the last moments before the last session - the panel discussion - we asked them to join us on stage. It was time to provide a voice to the self-advocates that were not presenters. Lauren opted to stay in the audience. In the following picture, you will see some of the panel members, L-R:
Stephen Hinkle, Darlene Hanson, Steven K, Sara L, Me, and Kate McGinnity:

What I really enjoyed during this segment was the interchange between various people on the autism spectrum. In one memorable moment, a young woman in attendance with her mother stood up and declared her preference that she be considered to be a "person with autism" as opposed to an "autistic person". She cited several reasons for feeling this way. I utterly respect her assertion of this viewpoint, and the way in which she clearly and diligently stated her case. We often throw the word "self-advocate" around, but here is a case where actions speak louder than words. I would be remiss if I didn't also mention Steven K, Bev, and Camille's responses on the same topic. Though they all disagreed with the original speaker's viewpoint, it was eminently clear the respect that existed between all individuals with divergent points of view. Moreover, the point was not lost on me that here were 4 autistic people, engaged in a really good discussion that is highly relevant to self-esteem and identity, while close to 150 NT's observed, and learned, and for the most part stayed out of it. Is this not what it is all about? From Peyton's note to this exchange of ideas, I hope you can grasp the importance of all that transpired.

Thursday morning, I woke up at 4:45 to go to work. The conference was over. I was exhausted, but felt really good about what had happened. I was still processing the many levels of information I had immersed myself into, I was still in a mildly unsettled state I often feel after putting myself "out there" like that (I am not a highly social creature), I was physically tired and even more so intellectually, and I was acclimating to the fact that - several years now after becoming an active participant in the Autism community as I know it - many people have forgotten more than I have yet learned.
And before I drove off to get back into the workaday routine, I did a quick email check.
I had received an email from Autreat. Several people had listened to the MP3 of the interview Bev and I had done on NPR and were writing to express their enthusiasm for the message we sent that day. One person was listening with xyr child, a young adult, who was "squealing and cheering" during the playback.

For a community which is supposedly impaired in the area of relationships and communication, the "experts" may be surprised at the prevailing level of interconnectedness.

An Inadequate Summary of the Hub at USD Part 1

2008-06-26T20:21:00.000-07:00

What follows is a completely inadequate summary of the occasion of The Autism Hub presentation at University of San Diego's Autism Institute on June 25, 2008. The reason it will be inadequate, the reason that I know this even before committing it to paper, is that it would be impossible to capture the spirit and energy of that day in a simple blog entry.

It began with a toast.
Bev, Camille, Dad of Cameron, Estee, and I all met in Old Town San Diego at a landmark San Diego restaurant - the Old Town Mexican Cafe. Its the kind of place with wire-back chairs in a stuffy room and slow service, but that still has a 45-minute wait on a Tuesday evening. And has for decades.
When we sat down for a joy-filled dinner, it was the first time several of us had met in person, despite e-knowing each other for a couple of years or more. Though the next morning we were to present to a crowd of 200 and we were just getting a feel for each other, we just flat-out had a great time. If you think you might have come up during our dinner conversation, you probably did. When Do'C asked the Mariachis to play Jalisco, we knew it was time to call it a night. But not before we toasted the fact that we had all come together, spanning three states and two countries, to talk about what we do.

Next thing we all knew - the next morning - we were hustling around in a media room in the Joan B. Kroc Institute for Peace and Justice (certainly an apropos location for the subject matter), transferring files from laptop to laptop, testing software versions and compatibility, running through various ways to reshuffle and reorder the presentation due to aesthetical, timeframe, and technological issues. If one was not careful, one might by impaled by a flying memory stick in that busy room. After a very quick 90 minutes, Dr. Jodi Robledo came in and said we had access to the auditorium in 5 minutes. But we were only 20 minutes into our first run-through!

As we set up on stage in the main auditorium ( a beautiful room in a world-class facility), I noticed that Peyton Goddard came in the room with her parents. Peyton's friend, Lisha, had already been there filming, and I was hoping this meant Peyton would be attending. She came over to the relatively empty side of the auditorium where my Mom (who came to see our presentation) was sitting and joined her for a while. In the meantime, the couple of hundred guests filed in and took their seats. The audience was predominantly educators and service providers, there were a number of parents, there were three self-advocates who had come down from Orange County, Stephen Hinkle also joined us later, and I believe two other autistics were in attendance.

The presentation, as we were told later, came together perfectly. Though we each individually had chosen our won subject matter, what resulted was a symphony of perspectives, assertions, and concepts that hit on seemingly every cylinder. From Estee's video, "Adam Speaks" to Bev's talk and video on the importance of respectful language, from Do'C's cheerleading (literally) and logical presentation about the "epidemic" to Camille's deeply insightful discussion of bias and stereotyping (bias: don't think you have it? Guess again...), from lots of laughs to some very touching moments (a moment of silence for Katie McCarron), we hopefully brought the attendees through as many aspects of the Autism Hub as can be accomplished in 2 hours.

In one of the more touching moments I experienced (there were many more that I am not fitting into this post), Peyton sat with her parents in the front row of the otherwise-empty auditorium near the end of the lunch break. Her Mother told us that she was typing something for us that she wanted us to have. After quite a few minutes, her mother had transcribed the brief note Peyton had worked so hard to write. The words were powerful, poignant. I will share them if I receive permission from Peyton to do so, as I forgot to ask her that day. They left the indelible impression that at least one person had heard our message loud and clear. Strange how this same person is one who I, in my own ignorance, may have "written off" just a few short years ago.

Perhaps in another post, I'd like to describe that afternoon's breakout session, as well as the fascinating panel discussion at the end of the day (please let me know if you are interested in hearing about it).

But in case it takes me some time to get that written, I want to make sure I express my gratitude to Dr. Anne Donnellan for making this whole thing possible. I am probably the 17,000th person Anne has directly impacted in a positive way, and am happy to be in that group. I want to thank Dr. Jodi Robledo for doing the heavy lifting of organizing the conference, despite her pregnancy (congratulations!) and for being the only person to subject herself to more interviews than I did. I want to thank Martha and Kate and Nan for their unabashed support for us "rookie" participants, and I want to thank Stephen, Peyton, Steven, Sara, Lauren, Bev, Camille, and a young woman in the crowd whose name I don't know for adding the "autism" to the "autism conference". I want to thank Diana Pastore Carson for the most heartfelt response to our presentation and for describing the very difficult conditions her brother has endured in the absence of true acceptance from the people who were assigned the professional responsibility to aid in caring for him. And Darlene and J.D., whose breakout I unfortunately missed due to our own occurring simultaneously. If I am forgetting anyone, please remind me and forgive me.

And I want to thank my wife, who valiantly chased, fed, cleaned, cajoled, entertained, moderated between, picked up after, and kept on schedule 3 active boys while their Dad was off sitting on a stage somewhere. I hope I'm improving J's future, I know she is improving J's now.

Hub Hits The Airwaves!

2008-06-23T21:33:00.000-07:00

Can I get a witness?
How about 10's of thousands of witnesses?

That's approximately how many people in Southern California learned about the Autism Hub today, as Bev and I were guests on the popular show "These Days". Here is a link to a brief synopsis of our piece.

If you click on previous shows, you will see some other recent guests.
Last week? Poet Maya Angelou. Astronaut Sally Ride. Former WH Press Secretary Scott McClellan.
This week? Bev and Steve.

We had a 30-minute interview with host Tom Fudge. He asked some very interesting questions, ranging from the basic- "What is the Autism Hub?" - to the more complex "Do you believe Autism is a disability?"

It was my hope that the audio files would be available by now, but they are not. Once they are, I will re-post this entry so you can listen in.

My sincere thanks go to Bev, who allowed me to encourage her to do this.
I also want to thank KPBS and Tom Fudge. No one made them choose to allow a positive message about autism to hit the SoCal airways today, and I appreciate the venue to let some people know the good things that are happening in the autism community.

And thank you to those who have re-posted their favorite entries (Club 166, Brett, others). Between the radio show and the USD conference (the first Hub presentation is tomorrow afternoon) I am expecting some new readers to be coming our way.

All Quiet on the Western Front

2008-06-22T10:40:00.000-07:00

Yes, all is quiet today on the Western Front. But not for long...

You see, as I write this post there are Autism Hub bloggers on the way to San Diego. From 2 countries, from 3 states we are converging at University of San Diego to participate in and present to the "Work With Me, Not On Me" conference.
At this conference, there will be discussion of all kinds of aspects of Autism, with an emphasis on how we can provide appropriate and effective education and supports to autistics over their entire lifespan.
Issues of movement, of language, of societal inclusion, of self-image and self-esteem, of fulfilling potential - all of these will be discussed, with respect for autistics as a guiding principle. While I understand the need to look at many different facets of autism and ways to promote a positive outcome for autistic individuals, I am proud to be contributing to this school of thought as I feel it can directly benefit autistics in the long term. There are those who disagree with the importance of toning down the rhetoric, of using positive terms, of emphasizing strengths, of dispelling myths about autism. I submit that we can accomplish these goals without ignoring the challenges of autistics, and while fully respecting the efforts at overcoming the myriad disabling aspects of autism. My good friend, Bev, may have put it best when she wrote in an open letter to parents:

"But I am not your enemy. If you have a child on the spectrum and are hoping to cure him or her, hoping to get rid of the autism, I don’t want to argue with you. Most likely, you and I don’t even use the word “autism” to mean the same thing. If you are one of these parents working to change your child, know that I am working, too. If your quest to change the course of autism fails, perhaps the quest to change societal attitudes will fare better. In which case, your autistic child might have a less hostile world to live in.

That is why I do this."

Thanks for that, Bev.

So today, then, is a quiet day (all quiet...) that precedes a whirlwind of activity. I have always been a huge fan of quiet days around the house, and the proverbial apple seems to have not fallen far from the tree. A little while ago, I walked by J's bedroom and saw the following scene:

Apparently, he is going to read all of those books. There are probably 30 books there. Don't put it past him - he devours books at an amazing rate.

Some other members of the family can't even muster the energy required to be read to. Evidence, Baby C:

So I will continue to work on the various presentations and discussions we will be part of at USD over the course of the day, my fellow bloggers will complete their journeys, and tomorrow we will converge and hope to begin to help some parents, self-advocates, and professionals understand who we are, what we stand for, and why we do what we do. Understanding, of course, that this group is anything but homogenous and represents a huge diversity of opinions and emphasis on different topics.
We also may have a surprise in store. More on that later.

It occurs to me that over the next few days there may be many new visitors to the Autism Hub and to this blog. For those newcomers, here is a brief tour of some good posts from this week that I consider "recommended reading":

Joel Smith writes about how certain autistic strengths may, or may not, translate into employable skills.
Alex blogs about his new personal best in 5K.
Amanda Baggs discusses some difficult communication issues.
Kristina Chew has numerous good posts this week - I would recommend this one about the importance of riding a bike.
Kev writes an Open Letter to those who aggressively promote the vaccine hypothesis.
Club 166 gives a day in the life of the typical autism Dad. Notice its a pretty good day.
Bev recommends some new PECS cards.
Estee celebrates her son moving to 1st grade. This hits home, as J also finished K this year. He tells everybody all about it - I mean everybody. Not much fluff, just in a loud voice with a sidelong glance - "I graduated Kindergarten!". This is currently his pat response to any question asked in public by a member of the community.
Michelle Dawson asks why Autism Speaks seems to have trouble with epidemiological figures.
Ari asks for input for the Autistic Adults Planning Committee.

There is more, so much more for people to learn about from reading these pages.

I'd like for any interested Hub Blogger to consider pulling your favorite post, on whatever topic you wish, and re-post it tomorrow. I have reason to believe that we may have a good number of people wanting to take their first look at what we have to say, and it seems that this might be a good opportunity to put our proverbial best foot forward. If you would like to do so, please re-post your favorite blog entry sometime tomorrow, the earlier the better.

Dr. Omer on Vaccines

2008-06-13T11:02:00.000-07:00

I don't spend too much time writing on this blog about vaccines. The reason is not that I don't think it is important - I think this is a very important issue that spans health, politics, science, human and financial resources, and quality of life issues for autistics. The main reason I don't spend too much time on it is that other bloggers such as Kev et al., Prometheus, Kristina, Mike, and Kathleen among many others do such a thorough and marvelous job with current analysis. I appreciate their efforts, and I hope they all know that.

What prompted this post is an interview I read today on a website called Science Progress. The interview was with Dr. Saad Omer, whose credentials you can find here on Johns Hopkins Bloomberg School of Public Health's faculty page. It really caught my attention because I think Dr. Omer has a very clear, concise, well-organized approach to describing where current knowledge stands in relation to vaccine safety and autism causation issues. Here is a set of assertions that is sensitive to all "sides" of the debate, that does not pussy-foot around adverse vaccine reactions, and yet falls back on the current science to draw current conclusions.

As the parent of an autistic child, I am often asked my thoughts on vaccines. There are so many talking points and subtleties that I often find it difficult to summarize why I have arrived at my position without losing them in the details and finer points. So I am posting portions of the interview to my blog, linking to the rest of it, and can use this as a referral when asked this question in the future.

Here are some excerpts:

On the Hannah Poling case:

So to put things in perspective for that case—and in terms of people drawing conclusions from it—I would caution that this is just a case and the question I often ask, even within the scientific community is “where are the controls?” Because when we assess scientific evidence, we need to keep in mind that we need to compare an association of an event with an outcome in both cases and controls, we haven’t had that kind of evaluation yet.

On the Hannah Poling case's significance to autism causation:

And just to clarify why we are on this topic: even if this link is established, and what it says is that mitochondrial disorders, which are a kind of disorder in the cell’s energy mechanism, is proven to be exacerbated by vaccines and result in autism spectrum disorders, metabolic disorders are very rare and it would explain a very small proportion of autism diseases—just to put that in perspective.

On Evidentiary Standards for the VICP:

... the Special Masters of the compensation program, not the HHS, interpreted as having said that the evidence should be evaluated on a standard of “biologically plausible.” I think that’s dangerous, because I can sit here and come up with twenty or thirty different hypotheses which would be biologically plausible on several biological models. We are not talking about probable; we are talking about plausible ... So I think it’s not a very robust standard to go by because what we are saying is that we would have judgments on these cases based on something that could happen, not something that does happen.

On methods to maximize Vaccine safety:

One major program is the Vaccine Adverse Events Reporting system, which is jointly managed by the CDC and the FDA, and events that seem to be associated with vaccines are reported into that system. It’s a good system for generating signals but it has its limitations ... There was a recent analysis published in Pediatrics that showed that most of the rise in reports of autism-related symptoms associated with vaccines has been due to increased reporting of litigation-associated cases. So we have that kind of a problem with VAERS but it still has a lot of utility in terms of generating signals. For example, it generated a signal for the old rotavirus vaccine.
...
Then the CDC has the Vaccine Safety Datalink. They have put together a system by linking databases from several large HMOs, and it covers approximately two percent of the U.S. population of zero to six years.
...
Then there is the Clinical Immunization Safety Assessment Network, which is a network of a few centers of excellence, mostly academic centers, coordinated by the CDC, to assess vaccine safety in a clinical setting.
...
I must say, I think vaccine safety needs a lot more resources than it is provided. Because as I said, vaccine events are rare so you need large numbers to study these phenomena and the resources that are available are very low.

On the risks of not vaccinating:

On the other hand, we know that there is risk of—even an individual level risk—of acquiring vaccine-preventable diseases in the United States if your child is not vaccinated. For example, in a national-level study it was found that kids who are exempt from vaccination requirements had thirty-three times—not percent, it’s times—higher risk of acquiring measles with those who are vaccinated, who do not seek exemptions, and [in a Colorado study] six times higher risk of acquiring pertussis than those who are vaccinated. So there are real risks involved in terms of acquiring vaccine-preventable diseases

On Rubella - very interesting point:

One last point in this regard: we do know that congenital rubella syndrome is associated—and there are some studies showing an association—with autism-like symptoms. So we know that part of that syndrome is explained by a congenital rubella syndrome which used to occur when the population-level immunity in the U.S was relatively low. So actually, MMR vaccine prevents against something that is associated with autism. So if you are thinking specifically in terms of autism, one should consider that we are talking about something that prevents autism.

On sources of information:

It’s several sources. We found in our studies—looking at parents of children exempted from vaccination requirements, compared to those vaccinated—there was an association with types of provider, trust in government, the sources of information people tended to get, information from some of the advocacy sites tended to seek exemptions at a higher rate, etc. So yes. There are several sources of that, and there are passionate people who feel there is an association with vaccines and autism, and that includes some celebrities as well. So that gets people’s attention.

On concerned parents:

On the other hand I must say that most parents, even those that are concerned about vaccine safety, are coming from the right place. All of us want our children to be safe from any harm, including harm from any pharmaceutical interventions.

On adverse reactions and risk/benefit:

One thing that people should realize is that we know that vaccines have some side effects. And we should acknowledge that, everyone who is involved. However, the risk and benefit calculus for all vaccines that are out there, based on our current knowledge, heavily favors not only getting your child vaccinated, but also getting them vaccinated according to the specified schedule.

On spreading out the schedule:

I have seen a new trend where people are splitting the difference and saying, “OK, I’m going to get my kid vaccinated, but I’m going to get them vaccinated late.” Well the risk of illness is not constant across childhood and so that’s why the Advisory Committee on Immunization Practices and the American Academy of Pediatrics come up with these recommendations to look at several factors, including the burden of disease. So it’s important to not only get your child vaccinated, but also to get them vaccinated per specified schedule.

All bold emphasis is mine.

On the Green Our Vaccines Rally

2008-06-06T20:13:00.000-07:00

This topic is being more than adequately covered elsewhere, so I fortunately need not go into excessive detail about the Green Our Vaccines rally staged in Washington, D.C. on Wednesday.

I do, however, need to express one level of serious dismay with some of the posters being shown there. Some of the posters were fairly mild-mannered. Some ramped up the rhetoric, using Devil imagery to mock our government health agencies and employing the skull-and-crossbones to imply poison (although vaccines are not in any way poisonous). But the ones the evoked the most visceral response in me were the ones that exploited autistic children. Let me give you an example:

This post has been edited to remove two photos taken at the rally. For a discussion of why the photos were removed, please see the comments section.
The first photo depicted a mother holding a picture of her beautiful son, surrounded by a Skull and Crossbones and the words, "Stop Poisoning our future"

In this poster, Mommy's message to her son is quite clear - your future has been poisoned, you are a casualty. Where else but this rally can you find parents carrying photos of their *live* children accompanied by POISON and TOXIC WASTE symbolism and terminology? I have to wonder if the parents have stopped for a moment to consider the impact of this imagery on their child.
Now take a look at this one:

The second photo had two side-by-side frames. In the first was a smiling little boy with the heading "What God Made". In the second was the same boy in an awkward pose saying "What Man Made".

This is the one that elicited the most powerful response from me, but very likely not for the reason this Dad intended. First off, do you think Dad picked the best 'after' photo to prove his point, or the 'worst'? Am I the only one who gathers the intended message that if he were autistic in the 'before' picture, he couldn't possibly be smiling?
I am deeply bothered by the callous, insensitive nature of this poster. How is a child supposed to feel valued when their own father is going out of his way to cast his appearance/behavior in the worst possible light? This is really foul, really disturbing, and I think provides a chilling example of what happens when anti-vaccination zeal is a more powerful force in someone's life than simple respect for a person, a child.

I recently received a request from a friend to help them with some written assets for a project about how people view "behaviors". The simple request was to review some of my writing about my son and to pick out some examples where I had addressed problem behaviors. The goal of the project is to discuss various ways people refer to autistic behaviors in an effort to highlight some positive, respectful methods of doing so. So I went to work reviewing archived blogposts to find some. I knew I would have to do some digging, since I didn't specifically recall writing directly on this issue. The end result is that I found virtually nothing of benefit except some comments to my posts (not by me). The reason for this, as I discussed with my friend, is that I do not write negative things about my son. I can be frank and sometimes allude to difficult moments or times, but I feel a powerful parental duty to not cast aspersion on my son, the fact that he is autistic, the fact that raising him includes challenges that are directly related to his autism. My duty as a Dad to a 6-year old boy is to keep the world at bay, not to invite it in and hold him forth as a political tool or pawn in an anger and blame game.
Many contributors to the Autism Hub are accused of glossing over autism, of making light, of minimizing autism's disabling aspects, even of ignoring the existence of those who are most severely affected by autism. Perhaps the examples above can provide a good example of why I choose not to dwell on my son's most challenging issues for all the world to read and discuss. Perhaps I have too much respect for him as a person - a person who will someday read this blog and hopefully be proud of his Mom and his Dad and his brothers and who can feel really safe and secure knowing that he is valued as a person - not relegated to the scrapheap of collateral damage.

This philosophy is not new, not something I conveniently stumbled upon as a way to criticize the Green Our Vaccines attendees. My very first post to this blog, Taking Up The Pen, contains this line:

"It occurs to me that, years from now, these words will be accessible to all three of my sons."

But that's just One Dad's Opinion. What's yours?

Amicus Letter for Nate Tseglin

2008-05-27T19:14:00.000-07:00

On March 17, I wrote a post titled One Runs Home about the plight of Nate Tseglin. Nate is a young man who was forcibly removed from his home and consigned to Fairview Community Center in Orange County, CA by San Diego Child Protective Services.
I recommend that you read the family's website, GetNateHome, for a complete description and timeline of the events leading to Nate's current circumstance.
Today I was informed by my friend Ari Ne'eman, President of ASAN, that he and V.P. of ASAN Scott Michael Robertson had submitted an Amicus Curiae brief on behalf of Nate Tseglin. The purpose of this document is to establish, via published scientific findings, that his current placement and course of psychotropic medications is highly inappropriate.

I'd like to publish that letter here on my blog, and express my hope that this piece of advocacy by ASAN provides significant assistance in estabishing the need for Nate to return home to his family.

To Whom It May Concern:

The Autistic Self Advocacy Network (ASAN) is an international organization of adults and youth on the autism spectrum, including Asperger's Syndrome, working to promote the interests of the autistic self-advocate community through public policy and social change advocacy. We are writing as friends of the court to express our concern about the treatment of Nate Tseglin, a young adult with a diagnosis of Asperger's Syndrome who has been taken away from his family and placed in an institution under heavy psychotropic medication.

The right of individuals with disabilities to live in the community has been well established by the United States Supreme Court under the landmark Olmstead v. L.C. decision. The ruling requires states to shift funding from institutional placements to community living supports. Given the clear evidence that institutional settings and the indiscriminate use of psychotropic medication negatively impact the quality of life of autistic adults and youth, we are concerned by Nate's continued placement under restraint in a residential facility where he is isolated from his family, his community, and any meaningful educational or social opportunities. The overwhelming consensus of the scientific community indicates that such a placement is inappropriate, unnecessary, and counterproductive.

Scientific studies have not found that autistic persons are more likely to commit violent acts or violent crimes than non-autistic persons despite some media sensationalism of isolated cases of violence (Murrie, Warren, Kristiannsson, & Dietz, 2002; Barry-Walsh & Mullen, 2004). Autistic persons are, however, more likely to experience depression, anxiety, and low self-esteem, for which cognitive-behavior therapy (CBT) and one-on-one talk counseling are the recommended interventions (Stewart, Barnard, Pearson, Hasan, & O'Brien, 2006; Sofronoff, Attwood, & Hinton, 2005). Autistic persons also require positive support systems, frequent encouragement and praise, and living and learning environments that are compatible with their cognitive strengths, challenges, and preferences in order to achieve success in their life pursuits and gain a high quality of life (Renty & Roeyers, 2006; Plimley, 2007). Psychotropic medications should always be used with extreme caution with autistic persons as typically these medications are not specifically tested on this population in clinical studies, and psychotropic medications may cause substantial harm if used in an indiscriminate fashion.

Nate's current placement does not meet his needs and is likely to result in long-term physical and emotional damage. We urge the Court to recommend that Nate be removed from the Fairview Developmental Center and returned to the community.

Regards,

Ari Ne'eman
The Autistic Self Advocacy Network,
President
1101 15th Street, NW Suite 1212
Washington, DC 20005
aneeman@autisticadvocacy.org

Scott Michael Robertson
The Autistic Self Advocacy Network,
Vice President
srobertson@autisticadvocacy.org

Here We Go Again!

2008-05-22T19:52:00.000-07:00

I am thrilled to announce that the Autism Hub will once again be featured at the University of San Diego Autism Institute's Conference - this time in late June.

In January, Bev, Dad of Cameron, and I were fortunate enough to put on the first-ever Autism Hub presentation. By all accounts, it was a successful venture and the attendees hopefully left with a broader view of autism than when they started. And now its time to do it again - but this time we'll take it up a notch and actually do two presentations!

This time (the conference is June 23-25 and titled "Autism: Work With Me, Not On Me"), we will be joined by two more Hub members - Estee Klar-Wolfond will be coming in from Toronto, and Autism Diva will be heading south to bolster our ranks! We are excited to welcome these two Hub bloggers to the presenting group, which now numbers 5.
Estee will also be delivering a keynote address, which I very much look forward to. Especially in light of her recent health problems, I couldn't be more pleased to have Estee join us. And Autism Diva? What a pleasure it will be to have her depth of knowledge and experience as part of our team.

On the USD website, you can see the speaker bios and presentation descriptions. The conference will be held in in the Rotunda/Theatre at the Joan B. Kroc Institute for Peace and Justice - a fitting location for the content we will deliver.

The Autism Hub is a special "place", and I will be proud to once again stand with my fellow bloggers and represent just a few of the many perspectives that are contained therein.

Marley and Us

2008-05-20T20:36:00.000-07:00

Last July I wrote a post that served as an introduction to Marley. At the time, Marley weighed about 10 or 12 pounds and was just all kinds of cute. Just for fun, my wife thought it was time to post a comparison. So, here's Marley on July 15, 2007:

And here is Marley on May 15, 2008, just 10 months (and about 95 pounds) later:

(Hint: Count the bricks for a size comparison)

Now, you may be asking yourself after seeing these time-lapse photos, "Did that big oaf of a dog even move during that 10 month period?"
Yes, he did. But only to eat.

Oh, and to chase Robots. (Bev, you are not the only autistic person with an affinity for robots. J ... loves ... robots ... too...)
Is it all worth it? You know, three kids and two dogs? That's a lot of mouths to feed. That's nary a moment of rest in a day. That's more cleaning for L than one should probably ever have to clean. A crawling baby, spilled apple juice, and a shedding black lab is the modern day equivalent of being tarred and feathered. So why exactly do we do it?

For the answer, lets ask Baby C. He doesn't talk yet, so we'll let a picture speak 1000 words.

Assimilation

2008-05-18T20:30:00.000-07:00

I encountered a study a few days ago that you may have not noticed. Here is an excerpt from the introduction:

This remarkable growth has been accompanied by continued and escalating calls to reform [...] policy not only at the national level but within large and small communities across the country. [...] policy debates touch on a wide array of arguments: economic, political, ethical, legal, and emotional. In many cases, these debates are also influenced by incomplete or misleading information. All sides in the debate face a trade-off between conveying a concise message and oversimplifying an inherently complex issue.

These are many of the issues I find myself thinking through in relation to my own son's future, as well as for autistics as a whole subset of the population. And the granular nature of the Autism Spectrum - the vast complexity of how autism can manifest and then play out over an individual's lifespan - plays into the extreme complexity referenced in this quote from the study.
The study goes on to say:

The purpose of this report is to present information relevant to these ongoing debates by measuring the degree of distinction between the [...] populations of the United States, or alternatively, their degree of assimilation... The analysis introduces a numeric index of assimilation, which measures the extent to which the [...] can be distinguished from each other on the basis of commonly observed social and economic data.

Interesting angle. This study is bringing to bear some statistical algorithms to determine the degree of assimilation into U.S. general society by a highly heterogenous group that is categorically similar only in respect to the fact that they begin as societal "outsiders".
You may have gathered by now that this study is not about autism or any other disability. Instead, it is about immigration. What fascinated me when I came across the abstract is how much I yearned to see similar data gathered and presented about autism.

A few disclaimers: I am not minimizing or overdramatizing the circumstances surrounding any individual or any group labelled or categorized as autistic or immigrant by making this comparison. This discussion is strictly about the data gathering and ensuing statistical analysis used in the Manhattan Institute study and how the autism research community might be able to take a few lessons.
Look back at this sentence from the study intro for the sentence that tightened this analogy for me:

All sides in the debate face a trade-off between conveying a concise message and oversimplifying an inherently complex issue.

This seems to me to be such a common area of misunderstanding and misdirection in all areas of autism research, autistic rights, autism treatments, autism diagnosis.
One way in which this immigration study tries to channel the discussion is to create categories of analysis within which the data can be more accurately compared and analyzed. These categories are Economic, Cultural, and Civic. I think in a similar discussion of autistic assimilation the categories might look different. If 100 people were asked to name the 3 categories, you might receive 100 different answers. My answers would be, trying to keep in mind the vast array of people who are autistic: Activity/productivity self-determination, community and family involvement, and personal/spiritual/emotional expression. I'd be very interested in your comments with what three (or more, or less) you would identify.

I guess where I am going with all of this is that I, like virtually everybody involved in the autism community, would like to clearly and easily understand how best to approach solving the legion of challenges that face autistics over their lifespan. From toilet training to schoolyard bullying to friendship seeking to sexuality to job/career building to self-sufficiency at whatever degree makes sense for a given individual, I would love to see a clearer roadmap to success. I feel much the same way about the immigration debate, much of which seems to hinge on as many irreconcilable realities and viewpoints and human rights issues as the autism discussion does.

It is my belief that the autism community could draw some ideas from the Manhattan Institute's approach to gaining a deeper understanding of the immigration issue.

Definitions

2008-05-17T08:58:00.000-07:00

Back in March I received an email from a medical student in Canada. In it, she described herself as an "Aspie" - a person diagnosed with Asperger's Syndrome - and she was asking for participation on an ethics project she was working on as part of her medical school curriculum. She had contacted several bloggers who are either on the autism spectrum themselves or have an interest/association with the autism spectrum.

Her project was to collect and analyze congruency among definitions of three terms: Human, Fully Functional, and Normal. Once collected, could the definitions be used to understand differences in perception of autistics from within and without the autism community? I have written about the importance of words before, so this was a concept I could relate to.

I though this was a fair and decent request, so I decided to participate. I have not yet seen any results from her research project, but I hope to soon. Apparently she had asked 20 or more bloggers to participate - did anyone else reading this contribute as well? I would be interested in the definitions you used.

I can be a bit, ahem, long winded at times. Keeping that in mind I did ask the researcher whether there was a framework to stay within in terms of length or type of definition. Their project was designed to take into account any type of response. So here is what I gave as my definitions:

Human
A Human is quite simply each and every member of our species. Incredibly diverse in appearance and behavior, humans are nonetheless of one "family". 'Human' is a word that ought to be devoid of subjectivity, though it most definitely is not so. To be considered "less than human" is typically a label reserved for people who are viewed as being either unconscionably cruel and evil or not able to function in such a way as to be easily viewed as part of the broader 'family'. Either assignation creates contemptibility by its very implication, which is incredibly unfortunate for those who are not evil, yet still considered "less than human".
When considering this definition, I can't help but consider my use of the term 'whole person' in reference to how I feel ASD folks should always be viewed. I realize now that I intend this term to act as a counterpoint to the view that a non-typical human is 'less than human'.

Fully Functional
Whether or not a person is fully functional is far more dependent on the external circumstances, supports, and expectations of successful adaptation than it is within any one individual. Functionality, in other words, is situationally dependent.
A star athlete may excel on the playing field but utterly fail dealing with the pressures of parenthood. Is this person, then, fully functional? A person who is profoundly affected by autism may have difficulty or total inability to wash his/her own hair in the shower, but the same person may be a superior pet owner, whose dog or cat is a paragon of health and happiness. Is this person fully functional?
It is my opinion that none of us, therefore, are fully functional, and that the term itself is the result of a biased position. A more accurate statement that would expose the bias would be 'fully functional as compared to the average performance in any given activity and circumstance'.
An appreciation of what many ASD people need to exert in terms of effort to fit within this preconceived range of "fuunctionality" is merited. The fact that so many are so successful at it does not mean that the definition of 'fully functional' should not be expanded so that more ASD folks can be considered to be 'whole persons' (see definition of Human, above).

Normal
The definition of normal is perhaps the most fluid of the three definitons discussed here, and is entirely dependent on the position of the observer. What is considered to be 'normal' in Zambia is not necessarily so in Chile. What is 'normal' at afternoon tea would not be considered so during a cattle drive in the American West. Age, sex, status, culture, environment, and thousands of other factors all contribute to the subjective view of 'normal'.
However, it is not 'Normal' that makes parents cringe the day of their child's diagnosis of autism. It is, instead, its antonym, 'Abnormal'. Abnormality evokes a far greater response, and it is this automatic response the allows one to understand when something is, indeed, abnormal. I think that where great strides are being made in promoting understanding and acceptance in mainstream society of autistic people is in reassigning the value system that freights with 'abnormality'. For example, when my son, as he did last week, scores in the 99.7% in reading skills, that is definitely 'abnormal'. But not in a bad way.
Interesting to note is that had he been tested strictly versus a hyperlexic population, he probably would have tested - you guessed it - 'Normal'.

Meet George

2008-05-14T18:41:00.001-07:00

I'd like for you to meet George Saidah, Captain of Heart of Sailing.

A few weeks ago, we had the opportunity to join George and his crew for a daysail around San Diego Harbor. As all four of us sailors (baby C stayed with Grandma and Poppa) are nautical neophytes, we weren't quite sure what to expect. It was just ... perfect.

George is a retired guy who now runs an organization called Heart of Sailing. I'm not sure all of the details, but his story goes something like this:
After retirement, George was trying to think of a way to combine his ample free time, his love of sailing, and his urge to provide a valuable service to the community. In the middle of the night he shot awake in bed with this idea - which eventually became Heart of Sailing.

Here is an excerpt from the mission statement:

Although alternative forms of therapy such as art and music therapy, as well as horseback riding, have become widely accepted in the last few years, sailing is a unique environment for participants. Sailing encourages abstract thought and teamwork, develops problem-solving skills and ultimately helps one learn patience and self-respect. The experience of sailing is not limited to the physical, although for many participants, it is their first opportunity to enjoy the unique sensations associated with sailing: the feel of the wind, the movement of the waves, the sounds as the boat moves through the water, all of which are stimulating and exhilarating.

Some of this may be true, but we didn't do this for J as a "therapy". We did it for fun! And fun it was.
We were accompanied by another local family who have become dear friends over the last couple of years as our kids grow up together. Good company always makes a day more fun, less challenging, and more special.
With George and his crew, we four D's, and the 5 members of our friend's family, we had a pretty full little boat. Which was all the more reason for the kids to climb out on to the prow, which is a far different experience than riding on the seats in the stern. (That's pirate-talk for "front" and "back", for you land-lubbers).
We got to see some interesting traffic in the Harbor - including one freighter laden with brand new yachts - big, expensive yachts. I couldn't help but wonder of that was the only cargo currently traversing the 7 seas that, if the vessel sunk none of the cargo would be lost!

We also had the pleasure of meeting some Sea Lions. They were just basking in the rays of a beautiful San Diego day, choosing a buoy as their place of R&R.

And, just as George promised, as we rounded the tip of Point Loma, we caught a great view of the Point Loma Lighthouse. This lighthouse canot be seen from anywhere on land, as it is at the base of a high cliff at the tip of a peninsula. If you can see the lighthouse, you are officially in the Pacific Ocean!

In all, we have George's skills and generosity to thank for a fun and exciting day. Aye aye, Captain J!
Heart of sailing? Heart of gold!

A mish-mash

2008-04-29T20:00:00.000-07:00

Wow. Three weeks since I last sat down to elucidate my thoughts in the decanter that is One Dad's Opinion. Three weeks that have seen opportunity after opportunity to write and discuss go whizzing by, victims of the fevered pitch which life takes on during the spring for me and my family. Jeez, I'm starting to feel less prolific than Not Mercury here!
As many of you know, I run a company that distributes fresh cut flowers to the North American markets. Here in Southern California, floral production is peaking as Mother's Day draws near. This is a potent brew in our business, and I spend far more time at the office at this time of year than I would choose to in a perfect world. In the flower biz, however, one must make hay while the sun shines, so to speak.
At the same time, J is in Kindergarten, T is in preschool, both of them are in T-ball, Colin is walking (which dramatically increases his destructive range - now knee-high) and babbling a lot, Grandma and Poppa take them on regular weekend adventures, we had Arts in the Park to attend, it has been warm enough to swim, we are trying to train our puppy Marley (who is rapidly approaching 100 pounds of hyperactive dogginess), the yard and house need lots of attention, L and I are trying to exercise a bit more, etc, etc.

I also have been following the autism/mito story as it develops in fits and starts. While fascinating from a purely academic standpoint, the real-world implications are far-reaching. At this point, I am of the strong opinion that any possible mito/autism connection (with the implication that vaccines are the link) has turned into a feeding frenzy for the anti-vax crowd, that they are being irresponsibly (and erroneously) offered chum by sensationalist David Kirby, that real mitochondrial experts are carefully weighing in with cautionary notes that are being largely ignored, and that some bloggers are doing a superior job of weaving personal experience with scientific understanding in an attempt to bring some well-needed grounding to the situation.

Another fascinating situation involving Neurodiversity.com author Kathleen Seidel has been unfolding rapidly and with great affect. Let me be the 1000th to say Kudos! to Kathleen for her oh-so-American, self-made Motion to Quash that may have propelled Clifford Shoemaker (a key player in the autism/mito scenario, to boot) to the brink of jurisprudential retribution. For shame, Mr. Shoemaker. At the same time, thanks for indirectly generating so much traffic for the Autism Hub.

I have also had my nose in a few different books/publications. One has been Elijah's Cup, a heartfelt opus written by Valerie Paradiz. Though I am only about 1/3 of the way through this book, I am completely drawn in by the story of Valerie and her son's early days entering the arena that so many of us inhabit comfortably now. I am eager to continue on with the lovely style of Valerie's writing and its powerful, positive message.

Another thing I had wanted to write at some length about is Autism: The Musical. Here's the short version of my reaction to this documentary: I LOVED IT. Not all of it, but who cares? I loved it. Please watch it.

I have also noticed that we have a couple more new bloggers here at the Autism Hub - the more the merrier!. Welcome, Bill! Your well-grounded opinions and wonderful sense of humor are very welcome around here. Welcome, Jeff Gitchel! I've been reading your blog a bit and I really like it. Your real-world guides are great!

I also have been actively at work behind the scenes, along with several other Autism Hub bloggers, on a project. Taking a page out of David Kirby's book, I'm not going to tell you what it is right now. Instead, I am going to leave you with this teaser: Leave your calenders open the week of June 25.

IACC Meeting Information

2008-04-11T19:52:00.000-07:00

I wanted to post this in case anyone who does not otherwise have access to the information would like to attend or listen in on the meeting.
From an email distributed via the NIH Autism List Manager today:

IACC Strategic Planning Workgroup Meeting Announcement

There will be a meeting of the Strategic Planning Workgroup formed by the
Interagency Autism Coordinating Committee (IACC) on Monday, April 21^st from
11 am to 6 pm EST. Workgroup members will review current funding for autism
spectrum disorder (ASD) research, proposed research initiatives and resources.
They will then discuss and make recommendations on prioritization of research
initiatives for the IACC strategic plan for ASD research.

The workgroup meeting will be open to the public through a conference call phone
number and a web presentation tool on the Internet. Members of the public who
participate using the conference call phone number will be able to listen to the meeting
but will not be heard. There may be an opportunity for members of the public
to submit written comments during the workgroup meeting through the web presentation
tool. Submitted comments will be reviewed after the meeting.

Individuals who plan to use these electronic services and need special assistance,
such as captioning of the conference call or other reasonable accommodations,
should submit a request at least seven days prior to the meeting to Tanya Pryor.

Tanya Pryor
Interagency Autism Coordinating Committee
National Institute of Mental Health, NIH
6001 Executive Boulevard, Room 6187, MSC 9669
Rockville, MD 20892-9669
Phone: 301-443-7153
Fax: 301-480-4415
pryort@mail.nih.gov

To register for the meeting, please go to the link below:

https://www1.gotomeeting.com/register/630812808

The conference call phone number is (641) 715-3222, access code 693-119-10.

If you experience any technical problems with the conference call phone number or web
presentation tool, please contact GoToMeeting at 888-259-8414.

For more information on the IACC, please see the link below:

http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml


I agree with Ari Ne'eman that the "central stakeholders" in development of
autism-related policy and research orientation are those individuals who are on
the Autism Spectrum.  I have met many people who have tremendous
contributions to offer to the ongoing discussions taking place, many of which will
dictate future policies regarding autism.  I would encourage anyone who has the
time and the inclination to attend, listen to, or follow this meeting online
(via the provided web presentation tool), and to contribute when possible.

Portrait of Dad, Smiling

2008-04-09T20:36:00.000-07:00

Each weekday evening either my wife or I help J with his Kindergarten homework.
Today's homework entailed the directive to look around, say what you see, and then draw a picture of that in the box. L was helping J with his homework and I was sitting next to J eating my dinner.
J looked around and settled his searching gaze on ... me.

And this was the result:

Allow me to walk you through the creation of this piece of art.
The first thing J did was to ask for his colored pencils. He was not at all happy that we didn't have 'grey'. 'Why do you need grey', L asked. 'For hair' was J's reply. Ouch!
He decided to do the hair "spikey".
The black circles that you are currently convinced are eyeballs? They are nostrils. The yellow circle around them is my nose.
The red edges to the ears do not indicate that I am a warrior of the Sioux nation, but that my ear rims were redder than the rest of my ears.
The black dots are a very fine 5 o'clock shadow. I did shave this morning. J's attention to detail is astounding.
The large brown patch and the green smudge in the eye area of the drawing are my eyes. He asked me to look at him and stared deeply into my eyes, after which he pronounced, "Light brown for the outside, light green for the inside, and dark brown for the spots."
The yellow column upon which is resting my head is my neck (in retrospect, that is the strangest sentence I have ever written.)
The black oval, black stripes, and red circle below the neck represents the Adidas logo on my t-shirt.
And the best part, the crowning achievement of this original opus, the element that will echo through the years .... my smile. I always want my boy to see that smile. On so many levels, this is my favorite part of the "portrait".

One last thing to end this post...
This morning J was up early. He was perched in front of the computer when I came downstairs to leave for work at 5:20 a.m. I walked over, rubbed his head, kissed him, and said "Bye, J! I'm going to work now. You have a wonderful day, I love you, and you're a great kid!" (this is something I tell all three boys every chance I get)
Without peeling his eyes away from the computer, he responded in a low, yet falsetto, voice, "You're a great dad."
I walked away, knowing that even though he didn't address me directly or in a normal-volume voice he meant it. As I was about 5 steps away, he piped up with:
"Dad. I think you never thought I was gonna say that."

Microenterprises

2008-04-08T20:14:00.000-07:00

Since our son J is part of the Regional Center System here in California, we receive their periodic publication called "Communicator". This is a newsletter that has all kinds of updates about local activities and occasionally has other stories of interest.
This month, the cover story is "Microenterprises: A New Way for Consumers to do Business". This brief article discusses the microenterprise - defined as a business with five or fewer employees that can utilize initial capital of $35,000 or less. Think of things like minor repair operations, cleaning services, pet sitting or training, gift basket creation, local tech support, etc. The point of the article is that this type of business venture creates an exciting opportunity for individuals with developmental disabilities to strike out "on their own". Of course, on one's own can be defined in many different ways, as different people have highly variable needs for support.

The article goes on to detail some of the necessary areas of skill acquisition and interest determination that would allow for a successful outcome in a microenterprise.

I think the thing that struck me most about this article was the closing paragraph, as it seamlessly integrates my acquired views of both personal fulfillment/responsibility and the need to provide ample opportunities for all people to realize their potential:

"People have a universal desire to experience and express their dignity, meaning, and self-worth through creatively harnessing their skills and talents in volunteer or compensated work activities. Microenterprises and self-employment is a dynamic vehicle to make that happen."

Diagnostic Substitution

2008-04-08T11:13:00.000-07:00

I am of the opinion that an ongoing increase in the real prevalence of autism is not a foregone conclusion. I sometimes chafe at watching the general mass media, which seems to operate with the baseline assumption that the easily-demonstrated and indisputable increase in the administrative prevalence (i.e. reported numbers) of autism automatically signifies that more autistic people exist now than existed previously. I feel that the jury is still out on whether a real increase has occurred.
Anyone who has spent any time looking at this issue will have a pretty good idea of some of the reasons to believe that the current upward trend in administrative prevalence does not actually mean that more autistics are being born (or "damaged" into autism) nowadays. Among them are several changes in the diagnostic criteria, the adoption of the Spectrum Disorder assignation which includes PDD and Asperger's Syndrome, changes in reporting requirements at various service providers, an increased awareness among diagnosticians and a possible improvement in diagnostic tools, and a reduction in the social and educational stigma associated with Autism. Another chief reason is diagnostic substitution.
Diagnostic substitution describes an occurence in which a person either receives a change in diagnosis or is diagnosed with, in this case, autism instead of a different diagnosis that may have been appropriate under previous diagnostic criteria. It has been demonstrated numerous times that in CDDS data, the increase in administrative prevalence for autism very closely mirrors the simultaneous decrease in administrative prevalence for Mental Retardation. It has also been closely examined that Childhood Schizophrenia is a diagnosis that has, for many children, been replaced by an autism diagnosis as the diagnostic criteria for autism changed and developed over the years.
Setting aside speculation, it is nice to see some science being done on this question. Establishing accurate and consistent real prevalence figures and trends would be tremendously beneficial in understanding many aspects of autism, including clues to causation as well as planning for the future needs of autistic people in a whole-society sense.
Today I saw the abstract for this study that has been published in Developmental Medicine and Child Neurology . An excerpt form the abstract states:

"Rates of diagnosis of autism have risen since 1980, raising the question of whether some children who previously had other diagnoses are now being diagnosed with autism. We applied contemporary diagnostic criteria for autism to adults with a history of developmental language disorder, to discover whether diagnostic substitution has taken place. ... Some children who would nowadays be diagnosed unambiguously with autistic disorder had been diagnosed with developmental language disorder in the past. This finding has implications for our understanding of the epidemiology of autism."

That's pretty straightforward. This study follows another published in the Journal of Autism and Developmental Disorders (2007 Nov). From the abstract:

"We examined trends in assignment of special education codes to British Columbia (BC) school children who had an autism code in at least 1 year between 1996 and 2004, inclusive. The proportion of children with an autism code increased from 12.3/10,000 in 1996 to 43.1/10,000 in 2004; 51.9% of this increase was attributable to children switching from another special education classification to autism (16.0/10,000). Taking into account the reverse situation (children with an autism code switching to another special education category (5.9/10.000)), diagnostic substitution accounted for at least one-third of the increase in autism prevalence over the study period."

So here we have two differently structured studies that both indicate that diagnostic substitution plays a role in the increase in autism administrative caseload prevalence. These two follow another, perhaps more widely known study by Shattuck, published in Pediatrics (Apr 2006). This is the study that resulted in harrassment and character assassination of Paul Shattuck by the folks over at NAA, a major "mercury causes autism" advocacy group. From this study's abstract:

"RESULTS: The average administrative prevalence of autism among children increased from 0.6 to 3.1 per 1000 from 1994 to 2003 ... During the same period, the prevalence of mental retardation and learning disabilities declined by 2.8 and 8.3 per 1000, respectively. Higher autism prevalence was significantly associated with corresponding declines in the prevalence of mental retardation and learning disabilities. The declining prevalence of mental retardation and learning disabilities from 1994 to 2003 represented a significant downward deflection in their preexisting trajectories of prevalence from 1984 to 1993. California was one of a handful of states that did not clearly follow this pattern. CONCLUSIONS: Prevalence findings from special education data do not support the claim of an autism epidemic because the administrative prevalence figures for most states are well below epidemiological estimates. The growing administrative prevalence of autism from 1994 to 2003 was associated with corresponding declines in the usage of other diagnostic categories."

I think that in today's media climate, where fund raising a la Autism Speaks, spotlight seeking a la Jenny McCarthy and David Kirby, and controversy seeking a la every major news outlet are combining to paint a picture of a devastating autism epidemic, it is important to keep in mind that the path to real answer lies in the careful application of science.
And it is even more important to understand and recognize the impact of our focus on various issues on those who sometimes seem to have the quietest voice in a community full of big voices - autistics.

A Brief Break, and a Birthday Party

2008-04-06T20:40:00.000-07:00

Sometimes we need a break. But there is simply too much to write about, think about, and act on these days in the autism community. But first, I need a one-night break.
This post will, therefore, be a break from suspicious subpeonas, from mercury moms, from jabbering Jennies, from suspect science, from suggested segregation. It will not discuss important autistic issues such as residency options, community acceptance, communication assistance, or health insurance coverage. It will avoid causation controversies, blathering bloggers, and annoying antagonists. You will notice the almost complete absence of parental perception, friendly factoids, and buddy bias. In fact, you will be acutely aware of the almost all-inclusive absence of any and all autism assignations, both abstract and actual. All these things will be put on hold.

And instead, I'll just tell you about a birthday party.
No, seriously. I took J and T to the most interesting birthday party today. I carefully chose the word interesting, largely because many other adjectives simply do not apply in this case.

A few weeks ago, the invitation came in the mail. Pretty standard stuff for a 4-year old boy's birthday - an imposing Transformer commanding you to attend a party. We RSVP'd, and the family lottery determined that I go to this party with J and T, while my wife spent quality 1 on 1 time with baby C. (Family lotteries are great in that, hey, nobody can lose! Either spend a lively day with 'the boys' or a quiet day with 'the baby'. Automatic win-win.)
Noon rolled around today and we left for the party. As we approached the area, I realized that we were entering interesting territory. Very expensive homes set on several acres each make up this neighborhood, which is absolutely beautiful. We found the house we were looking for and went in.
It was a lovely home. Furniture was oversized, almost Baroque but lacking its ornate pretense, with big cushions and large pedestal-like footings. The flooring was dark hardwood, the interior rooms were separated by brick walls. The peaked ceilings featured dark wood beams and casing. It was austere and yet inviting, very nicely done. How very old-world, I thought to myself. And then I met the parents of the birthday boy who were Italian. Not Italian-American, but Italian born and raised. It turns out they are restaurateurs and own a couple of really good eateries in our area. Which leads me to the most interesting part of the party - the food.

Now keep in mind, as I list the 'finger food' portion of the offerings, that this is a birthday party for a young boy turning four. Also note that I will create contrast by listing the Common birthday party fare alongside the Actual party fare offered today.

Common / Actual
Tortilla Chips and Salsa / Pita Toasts and Ceviche
Cheese and Crackers / A full wheel of Parmagianno-Reggiano with cracked pepper wafers
Potato Chips / Deep-fried potato puffs with chorizo and chile stuffing
Ice Water / Vitamin Water, chilled, over ice
Pigs in a Blanket / Tart Cherry and Ground beef in Phyllo pastries
M&M's / Cinnamon and Stewed Apple Empanadas
Hot Dogs / Hot Dogs

Get the picture? Or, keeping in the vernacular, capeesh?
While not uncommon for an adult beverage such as a can of light beer to be offered to the parents who stay through these kids' parties, it is decidedly uncommon to be able to choose between a very nice Malbec from Argentina or an ice cold Stella Artois on tap.
(Note to self: Next year, at this kid's party, bring wife to be designated driver).
So they had an inflatable bounce-house and a swingset which kept the kids entertained. Then there was a fabulous puppet show - superbly done and replete with original music, konfetti cannons, smoke effects, and great kid humor. Very impressive stuff.
The cake. This was a marvel, something one might see on Ace of Cakes. This particular opus was an eclectic mix of Spiderman, Transformers, and Cars (the Movie). It was done in two layers. The top layer was chocolate with strawberry striations. The way they served it was to pool some creamy strawberry sauce on a plate, lay the cake slice on it, then smother it with more strawberry cream. While the kids were enjoying that, they served the adults the bottom layer. This was vanilla with vanilla cream striations, covered in stewed strawberry halves. This would have been great, except I really had my heart set on a particular Spiderman decoration that ended up going to the lady served right before me. I had to settle for sucking the frosting off a Lightning McQueen figurine. Damn!
All in all, a good time was had by all. I am really looking forward to next year!

How to Treat a Bully

2008-04-04T19:47:00.000-07:00

As the father of an autistic child, I often worry about my son becoming the victim of a bully. Today, I became aware of a situation that reminded me that bullying is not exclusive to the halls of your local elementary school or the public park.

A Bully can be defined as "a blustering, quarrelsome, overbearing person who habitually badgers and intimidates smaller or weaker people."
Apparently, Clifford Shoemaker and his clients, Reverend and Mr. Sykes, failed to consider the last portion of this definition prior to issuing their subpeona to Kathleen Seidel.

You see, Kathleen does not strike me as being someone who is weaker than anyone else, or as being someone who is likely to take bullying and intimidation lying down.
Please review, therefore, her post at Neurodiversity.com in which she describes the circumstances of the issuance of the subpeona and follows that with a 17-point Motion to Quash Subpeona that has now been filed. I have no legal background, but it certainly appears to me that Kathleen has offered a vigorous and compelling set of arguments for the consideration of the United States District Court for the District of New Hampshire.

The patently obvious effort at intimidating a private citizen who has no bearing on the outcome of the Sykes vs. Bayer case provides a crystal clear example of the lengths to which anti-vaccine activists and the ruthless trial lawyers who steer them will go. Considering the fact that my blog among many others was named specifically in section 5 of the subpeona, I am proud to stand with my fellows in the online community against this baseless harassment and infringement on Kathleen Seidel's personal right to research, analyze, and publish information about ... well ... any damn thing she wants to.

Here's to hoping that Mr. Shoemaker and his gold-digging clients get a lot more than they bargained for when they settled on bullying as their stratagem of choice.

Liz at I Speak of Dreams has taken the time (thank you, Liz) to keep a running list of blogs and other internet locations who have offered reactions to this situation. Based on a recent count, I may be about the 40th person to let my feelings be known on this travesty.

World Autism Day Statement by Ari Ne'eman

2008-04-02T11:45:00.000-07:00

I'd like to post Ari Ne'eman's statement, made today to the Florida Autism Task Force, here on my blog as I consider to be a well conceived and thorough dissertation on many significant points related to autism advocacy today.

These comments were delivered today to the Florida Autism Task Force's inaugural meeting by ASAN President Ari Ne'eman.

"Thank you for this opportunity to address the first meeting of the Florida Autism Task Force on today, the first World Autism Day. My name is Ari Ne'eman and I am here today in my capacity as the President of the Autistic Self Advocacy Network (ASAN), a volunteer non-profit organization run by and for adults and youth on the autism spectrum. ASAN works to promote the autistic culture movement and other opportunities for individuals on the autism spectrum to interact with each other as well as work to improve the representation of the autistic community in public policy deliberations about autism and disability affairs.

The autism spectrum is broad, diverse and subject to many stereotypes. Just as we work to combat generalizations about racial, religious, national or other minorities, it is only right to avoid a stereotyped view of autism. There are speaking and nonspeaking people on the autism spectrum; people currently capable of living independently and holding competitive employment and those with more significant support needs before those goals are conceivable to them. There are those of us who have held diagnoses since childhood and those of us who were identified later in life, serving to correct an inaccurate previous diagnosis that had placed us in the wrong educational or service-delivery infrastructure. To claim, as some continue to do, that we on the autism spectrum are all incapable of speaking for ourselves is an ignorant and damaging falsehood. Equally harmful is the idea that autistic people are all geniuses or savants, with Rain Man-esque abilities. As someone with an autism spectrum diagnosis myself, I hope to address some of these misconceptions, explain a bit more about our community and inform those assembled here today about the public policy priorities – and concerns – of the autistic self-advocacy movement. In doing so, I hope to communicate to you that, contrary to the unfortunate paradigm that has pervaded the media discourse about us, autism is not a tragedy. We are, as with any other minority, a community with unique needs, strengths, challenges and aspirations that are often distinct from the parent or professional voices that speak about us, without us. The true tragedy is the persistent discrimination, abuse and lack of access that continues to govern society's approach to us. On this, the first ever World Autism Day, we assert that it is this prejudice – not autism itself – that we have a true interest in combating, in the interest of ensuring for every person the rights of communication, inclusion, self-determination and respect.

I was diagnosed on the autism spectrum, specifically Asperger's Syndrome, at age 12. Growing up, I spent time in both inclusive and segregated educational placements. My own negative experiences with segregated educational environments led me to become an advocate for my own educational inclusion and later for the inclusion of other students with disabilities. These experiences motivated me to found the Autistic Self Advocacy Network, an international grassroots advocacy organization of adults and youth on the autism spectrum. ASAN's work has involved me in a number of areas of public policymaking that are important to people on the autism spectrum, some of which I will outline here.

In determining how best to develop a system that provides for the educational, service-delivery and other needs for individuals on the autism spectrum, it is imperative that self-advocates be recognized as the central stakeholder in this discussion. I'm happy to see Florida creating an Autism Task Force to identify what needs to be done in the areas of education, services, supports and research, however I am saddened that the task force did not provide for representation from people on the autism spectrum ourselves. During my time in Florida, I will be working to create a chapter of the Autistic Self Advocacy Network. I encourage the members of the Task Force to communicate with us in their deliberations. Future policymaking bodies relating to the autism spectrum and disability issues more generally must include self-advocates. We know our own needs best and no policymaking process can be legitimate without including those who it purports to serve. Nothing About Us, Without Us!

One of the key areas of unmet need for the autistic community – the community of those of us actually on the autism spectrum, as opposed to the parents and professionals who make up the frequently discussed autism community – is in the area of diagnosis. As many of you familiar with the autism field are aware, we have been seeing a steady increase in the reported incidence of the autism spectrum, with the most recent update pointing to an incidence of 1 in 150 from a previous 1 in 166. The reason for this increase in reported incidence is not an "autism epidemic" or any other causation theory that seeks to promote the false idea of autism as a contagion or a force that "steals" an otherwise normal child. This disease-oriented model is not supported by either science or our own experiences. What we are seeing is an increase in awareness of the autism spectrum, resulting in more accurate diagnosis identifying individuals who previously were placed within the mental retardation, mental illness, learning disability or other educational and service-delivery infrastructure. This is a situation that I myself experienced, having been diagnosed on the autism spectrum after having an inaccurate ADD diagnosis for years prior. It is also something that is experienced by many other adults and youth on the autism spectrum in a far more damaging fashion, as a result of the frequent institutionalization and presumption of cognitive inability that far too many autistics continue to suffer from today.

The rapid increase in autism spectrum diagnoses has accompanied repeated broadening of the diagnostic criteria for the autism spectrum, incorporating more information about the diverse manifestations of our neurological type. In addition, the past few decades have resulted in a decrease in the stigmatization of parents of autistic children, as a result of the medical community moving away from the odious and damaging inaccuracy that autism is the result of "refrigerator mothers". This, combined with increased services and supports available for the autism spectrum, has resulted in more autism spectrum diagnoses. These increasing numbers, however, fail to take into account the substantial number of individuals on the autism spectrum who, as a result of a lack of health care access and/or professionals trained in the diagnosis of adults as well as problems with inaccurate diagnostic criteria, are unable to find the resources to acquire the diagnosis that would accurately describe their characteristics and enable them to qualify for services. It is necessary that we increase the availability of accurate information relating to the autism spectrum in reference to adults and youth.

There remains a shocking lack of awareness for the needs – and even the very existence – of autistic adults. In many circles, it is assumed that autism is something relevant only to children and as a result legislation and policymaking has been focused mostly on early childhood. However, there is a large population of adults and adolescents on the spectrum with needs that are not being met. In areas like employment accommodations and other aspects of disability service-delivery, adults on the spectrum are frequently unable to access the supports that are currently available, due to a lack of knowledge of our particular needs. Many of us, as is the case for others with less obvious, "invisible" disabilities, face pervasive employment discrimination as a result of communication difficulties. Vocational Rehabilitation agencies in many states are unaware of how to address these issues, due to the fact that while many of us have the skills for competitive employment, difficulties with transportation, the interview process and the social aspects of the workplace can often interfere with holding a job. It is important not only to educate the general public about autism, but also disability service-delivery professionals who are too often unfamiliar with our population.

Many adults on the autism spectrum continue to suffer in institutions, despite the Supreme Court decision of Olmstead v. L.C., promising community living options for adults with disabilities. In my work on New Jersey's Olmstead Implementation and Planning Advisory Council and with ASAN chapters across the country, I have seen a consistent lack of knowledge of the unique needs of adults on the spectrum when planning community living options. Many of us have difficulties with certain kinds of sensory environments – a lack of awareness of these issues on the part of those planning and implementing the transition into the community can result in problems with the de-institutionalization process. These and other aspects of community living show the need for significant representation of self-advocates in the policymaking process, to ensure both the legitimacy of the process and the creation of the most effective possible public policy strategies.

Autism training for law enforcement (as well as other emergency personnel) remains a key issue. Many of us possess significant difficulties with communication, particularly in high-stress and anxiety-provoking situations. What happens when a person who cannot speak out loud when under stress is approached by a police officer and asked for personal information? What about when a person fails to understand instructions given to stop or engages in an activity that is interpreted as aggressive? There have been numerous incidents of serious injury and even death as a result of a lack of knowledge on the part of law enforcement personnel about autism and other disabilities. This must be rectified and has been the source of legislation in a variety of states across the country. High-quality training for law enforcement and other emergency personnel does exist and it should be utilized in every locale.

For many adolescents on the spectrum and our families preparing to transition out of the school is a process with little guidance or support. When I was preparing to leave high school, my school did not provide sufficient information on the college applications process because it was assumed that as a special education student, my options were limited. While it is certainly the case that not every student on the spectrum – or every student generally – will be able to attend university, more of us are having that opportunity. It is necessary to see more of a focus on college transition for students on the autism spectrum in both high schools and universities. One of the areas that is frequently ignored in this process is that of "soft skills" related to day to day living. Many of ASAN's parent members frequently are told that issues relating to life skills are not the obligation of school districts, despite the fact that this type of education is just as necessary for students to succeed as the more traditional forms of academics. The communication and executive functioning difficulties that those of us on the spectrum face compound the traditional difficulties that new college students face. In fact, these issues – as well as the matter of transition more generally – are relevant for all students on the spectrum, whether or not college is a possibility. For a successful transition to a post-secondary environment of any kind, basic life skills need to be understood. It is essential that steps be taken to incorporate these elements into the school curriculum in an inclusive fashion.

In a broader sense, educational needs for students on the spectrum must be given additional focus. There has already been a productive discussion on the issue of early childhood educational methodologies. It is important to keep in mind that any educational intervention should be aimed at the acquisition of skills, not trying to enforce an arbitrary standard of normalcy. Efforts should not be aimed at the undesirable and impossible goal of trying to make autistic individuals non-autistic. Instead, education should be aimed at addressing the significant disabilities many of us face with the goal of improving quality of life. We also have to ensure that are educational methods avoid utilizing abusive and dangerous techniques in the name of treatment. The use of aversive interventions, the application of pain as a means of behavior modification, should be considered unacceptable in any society that aspires to be termed civilized. As a result of aversives and abusive restraint practices, many students and adults in institutions are injured or even killed each year. This must stop. We need a full ban on the use of aversives and non-emergency restraint as well as an end to out-of-state placements that put students in facilities that utilize these barbaric methods.

We also have to face up to the persistent problem of bullying and its negative effect on the mental health of all students. Students on the autism spectrum are particularly vulnerable to bullies due to the social literacy issues we tend to have. When I was in school, bullying was one of the reasons I spent a period of time away from my home school. This is a common situation for students on the spectrum and represents a grave obstacle to our legal right of a "free and appropriate public education in the least restrictive environment". I know that the success that I have achieved today would not have been possible had I not returned to an inclusive school setting where I learnt more about how to successfully adapt to the world around me. Yet, as a result of bullying, many students face serious emotional or physical injury if they remain in their home schools. This also must be stopped. Florida remains one of a handful of states without true anti-bullying legislation. I urge the legislators and activists here today to address this problem.

Finally, I turn to the more controversial area of research. Here, the autistic self-advocate community holds strong views that may clash with those of some of the interest groups assembled today. The persistent focus on both causation and cure in the autism research agenda has left promising areas of research ignored would could positively impact the quality of life for those of us on the spectrum. Despite extremely encouraging possibilities in the realm of Assistive and Augmentative Communication (AAC) technology for many individuals on the autism spectrum, research in this area is given little to no funding. The development of best practices in service-delivery and education is too often ignored. Mental health needs, restraint reduction, health care access, transition, adult supports and a variety of other educational and service/support needs could all benefit from more research into best practices and effective methodologies. Yet quality of life-oriented research in general is underfunded. If we spent one-tenth of the money and attention we currently lavish on the idea of an autism cure on communication technologies, countless nonspeaking autistic people would be able to communicate today. The fact that we have not pursued promising avenues of research into communication possibilities should be a source of great concern to us as a society.

There are also concerns that we have about the type of research that is being funded. The autism spectrum represents a natural and legitimate part of human genetic diversity. As a result, efforts to identify genes associated with autism with the goal of developing a prenatal test, enabling the possibility of selective abortion, should be met with opposition from all those concerned about the issue of disability rights. Given the fact that 90% of fetuses that test positive for Down Syndrome are aborted and there exists a similar social stigma against the autism spectrum, I urge both private foundations and government research institutions to re-orient their funding away from research with eugenic applications. While we have no position about the broad issue of abortion, the issue of eugenics is of great concern to us.

Thank you for your time. If we as a society seek to fulfill the values we espouse, we must take practical steps to establish ourselves as a culture that respects neurological diversity in the same way that history has shown us to respect racial, religious, national and other forms of diversity. We on the autism spectrum can make significant contributions to the world around us and, with the right supports, services and education, we can and should be active and participating members of society. By pursuing the goals of inclusion, respect and access, we can make that a reality. I'd like to end with a quote from Jim Sinclair, the founder of Autism Network International (ANI), the first autistic self-advocate organization and a group from which much of the growing autistic culture developed from. ""The tragedy is not that we're here, but that your world has no place for us to be." Today, on the first World Autism Day, I encourage all of us to think about what we can do to change that unfortunate reality and pursue a policy of autism acceptance, now and into the future."

While I agree strongly with the majority of Mr. Ne'eman's and ASAN's positions, there are a few elements of this statement that leave me wanting to discuss the positions in more detail. Specifically, though I share his concerns about genetic research and its implications for eugenics, I also see the potential for genetic research to result in significant quality of life improvements for autistic people. I am not knowledgeable enough about this topic to postulate how best to reconcile these issues.

Another Day

2008-03-27T20:02:00.000-07:00

In keeping with the style of an earlier post of the same bent, here is a summary of how the D's spent our day. Everything I put on this list is true.

Today, I breakfasted on a homemade fruit salad of Kiwi, Mango, and Nectarine with a squeeze of Lime. I gave Baby C (14 months old) a taste of Kiwi and watched a transformation from normal baby to Kiwi-jonesing baby before my very eyes. He loved it so much, I won't be surprised if his first words have a New Zealand accent.

Today, I drove over 120 miles.

Today, I watched a calico cat traverse a tightrope approximately 40 feet long and approximately 30 feet off the ground, all to the theme song of "Jump!" by Van Halen.

Today, I listened to J in the backseat repeat the phrase "All Hail Plankton" for about 7 or 8 minutes. Plankton, most commonly recognized as a drifting organism that inhabits the pelagic zone of the ocean and is a key component of the oceanic food chain, also happens to be the nefarious (though tiny) arch-villain in Spongebob Squarepants' world. Try sitting in Southern California traffic and listening to "All Hail Plankton" in chant-like monotone to test your sanity sometime.

Today, I devised a plan - with the help of a local carpenter/contractor - to possibly rebuild a workshed on our property. This outbuilding was partially crushed when an ancient California Coastal Live Oak tree collapsed on it last year. With a new wall, a new roof, some window coverings, and a coat of paint we could have ourselves a nice new shed.

Today, I brought home to my wife her very favorite treat - peanut butter/dark chocolate ice cream from our tiny local ice cream parlor. We all deserve a treat sometimes.

Today, I spent a few minutes hoping that a shipment was going smoothly for one of my best customers. I am on vacation this week, and pre-arranged a large, important order for a wedding in Arkansas. It consisted of over 1200 stems of Tulips and French Tulips in pinks and whites, along with Asparagus Myerii and white roses. If anyone reading this likes flowers and wants to know more about the business, check out The Human Flower Project. I have been in contact with them about doing some writing contributions. Its a really good blog/interest site.

Today, I introduced my boys to the musical genius of Rage Against the Machine. Some may disagree with me (most?), but I think this band is artistically and technically among the best I've ever heard. Despite their ear-crunching sound (hey, its an acquired taste!).

Today, I watched a young girl of about 7 years old perform a rendition of "We Are Family" by the Pointer Sisters, complete with over-emoted arm movements and a seemingly fully choreographed spins and hip-swings. This done on a raised platform of a Jungle Gym, and the only audience (besides me sitting at a distance, unnoticed) was my middle son T. He was enthralled.

Today, J won an Orca that he named Shamu and a Dolphin that he named Miss Dolphin. T, on the other hand, won a Penguin that he gave as a gift to his Mom. He also won a Manta Ray that he gave to Baby C. He's a sweet kid.

Today, I sank 63 of 100 free throws. On the last one, I was imagining myself dropping the winning basket to advance University of San Diego to the Sweet 16. I bet no one's ever imagined that before, right?

Today, I opted for the Caesar Salad instead of the Slow-Roasted Beef Sandwich. Good for me, bad for my taste buds.

Today, I had a late dinner. I took the opportunity of eating alone to start Children of Hurin (by JRR and Christopher Tolkein). I've been wanting to read this book as a way to continually feed my utter fascination with the world that sprung forth from the mind of Tolkein. He is a literary treasure, in my opinion.

Today, J waited in lines for the first time without a "disability pass" allowing us/him to enter an attraction without waiting. I think it is a good step, though I fully support that accommodation for those who need it.

Today, I fed a Dolphin by dropping fresh fish in his/her mouth. Ever felt a Dolphin? They feel like hard-molded rubber, not unlike a really smooth tire.

Today, I drove by two of my old College residences. One was in the "Dogpatch" near campus, the other was in Mission Beach. Very nostalgic. Instead of me and my punk friends driving by, it was older me and my great kids.

Today J and T and I unsuccessfully tried to find the "Sunny Jim" Cave in La Jolla. Next time, we'll find it.

Today, I am going to finish the night by watching No Country For Old Men. I am drawn to this movie due to the fact it was written by Cormac McCarthy, whose "The Road" I recently read. "The Road" is one of the bleakest, most difficult novels I've read. McCarthy gives substance to emptiness, if that's possible. Therefore, I expect No Country For Old Men to be of the same vein.

Today, I prepped tomorrow's dinner as follows: Mince together onion, garlic, basil, pancetta, dried oregano and marjoram, olive oil. While continuing to mince, add some Balsamic Vinegar. Once you create a paste, take a while chicken and butterfly it. Stuff paste under all the skin, then rub remaining paste on the outside of the skin. Refrigerate overnight. Tomorrow, I'll arrange it on a pan surrounded by baby Yukon Gold Potatoes. I'll drizzle Balsamic over all, then a sprinkle of Sea Salt. Bake until crispy. Meantime, steam some cauliflower partway. Saute Red Onion in olive oil, then add and brown the cauliflower florets. Add some lemon rind and black pepper and serve with the chicken. Its a meal fit for a Tuscan prince! (And here I give a shout out to new Hub bloggers - the Buongiovannis! Benvenuto, Angelo e familia!)

Today, I realized that my life is less and less resembling what I thought it was going to when we received J's autism diagnosis. This realization runs concurrently to little signs we are seeing in Baby C - just enough to keep us on our toes and watching and wondering...

A Leopard Cannot Change His Spots

2008-03-25T19:37:00.000-07:00

I just read a mind-bendingly offensive post by pop-journalist David Kirby over at the Huffington Post. This guy has some serious gall to write such things as:

"It serves to remind us all that, no matter what "causes autism," no matter what, if anything might "cure" it, children affected by the disorder deserve all of the honor, love and patience that we, a nation consumed by our own attention deficits, can muster."

"They deserve more than our compassion, our love and our dollars. They deserve our respect."

What, you may ask yourself, is so wrong about these statements? Well, by their own right, nothing at all. The rub lies in the dissonance between the source and the content. In other words, David Kirby has utterly no business taking on the mantle of "let's respect autistic people" at this point. Has any single person done more to damage the likelihood of positive outcomes for autistic people in our society today? Let's review exactly what David Kirby has done for autistic people since Evidence of Harm was published in 2005:

*He has helped to turn the conversation away from "how do we help autistic folks at all ages to thrive?" and pointed it towards "where do we direct our anger that autistic people exist?".

*He has, through his sensationalist, wildly accusatory book created a pocket of conspiracy theorists in the autism community. A few certainly must have existed before he came along, but he (along with Andrew Wakefield) is the one that brought the anti-vax/toxic child brigade. An example of how bad it has gotten lately on the internet: One person - who is perhaps the most frequent commenter on virtually every site I visit that discusses autism - is not related in any way to the autism community. He is not autistic, is not a parent of autistic children, is not a researcher or physician who works in the field, is not a therapist, nothing (much like David Kirby, come to think of it). What he is, is an anti-vaxxer who was drawn to the autism community due to the controversy created, in part, by David Kirby. This illustrates that fact that Kirby's influence on the autism community has nothing to do with autism, and has everything to do with creating controversy.

*He has, through his promotion of the completely false notion that autism somehow resembles mercury poisoning (it doesn't), even created a whole new set of terminology with which people can refer to autistics. He even mentions one in this post, "...there is some talk about vaccines, environmental toxins and 'damaged kids.'" Yup, that's right - damaged kids. Pardon my French, but thanks a lot, a**hole. My kid is not damaged, despite your honeyed tongue convincing thousands of parents that their kids are.

*He has, by influencing a change in the national dialogue about autism, helped to create a situation where funding must be dedicated to grasping after theories long-since discredited. Not only with regards to Hg=autism, but also with MMR=autism. You see, we live in a world with limitations. Among these limitations are funding limitations. When a given community has a finite amount of dollars that can be used for research and direct support, then resources must be budgeted. Ideally, they will be budgeted towards areas that will be of most immediate and direct benefit to autistics through research, treatment, and occupational/educational/functional supports. Not so in the autism community, where we continue to throw good money after bad with call after call for more research into the mercury/vaccine causation theory.

*He has caused good parents to go after each other's throats by causing the focus in the autism community to rest on causation. A brief visit to the Autism Speaks message board will provide you all the evidence you need for this. I myself have dusted it up a bit over there, nothing I am proud of to be sure. Please note, while you visit there, that within the "Autism Science" category, 12 of the most recent 20 topics directly discuss either vaccines or mercury. For contrast, see in the sidebar of this blog - under "Autism SagePub Feed" - how many other areas of research can and must happen in the field of autism. In the "Autism in the News" category, also 12 of the most recent 20 posts focus on vaccines and/or mercury. For contrast, read the Autism Hub to see essay after essay, day after day, discussing all kinds of news items that have nothing to do with vaccines or mercury.

*He has spurred on the growth of the DAN! movement, with all of its unregulated AltMed practices and complete lack of ethical or professional oversight (read more about specific DAN! practitioners here). I would argue that DAN! has done more harm than good, when one factors in a family's time and money as an "opportunity cost". In other words, even the treatments that do nothing are not copacetic.

So here we have a guy who has just one "inroad" to the autism community - that he wrote a widely discredited book about a failed causation theory about autism. And yet here he is, again, opportunistically using the debut of "Autism: The Musical" documentary on HBO to get his name back in the discussion. But now the Doppleganger tries to take on the mantle of peacemaker. He comes out with lines such as:

"Here, I hope, is a movie that everyone can watch and appreciate."

and

"This all-too-real movie lifts the heart up and then slams it right back down on the pavement -- and we love every minute of it."

But his true colors belie his ability to conceal them. Throughout his post, he peppers the reader with his real view of autism - something to be held at arm's length, something that may actually produce a good feeling amidst a sea of anguish and despair. And, stunningly, he now takes the tactic that if kids are not as he describes them, maybe - just maybe - they aren't autistic at all. Observe:

"Others might worry that the portraits of the two high functioning boys -- so bright and charismatic you want to hang out with them for hours (though their peers shun them into a lonely world of their own) -- will leave the mistaken impression that most children with autism are like this. If they were, then the epidemic might be slightly less painful to bear."

(emphasis mine)

or

"Please watch this film: You will be treated to an achingly accurate portrait of what autism is, isn't, and can be."

(emphasis mine)

"Divide and conquer!" once spoke Julius Caesar. Apparently David Kirby was listening. Only JC was building empires, while DK was just selling a book.

One last breathtakingly offensive remark David makes that cannot escape notice;

"Sadly, however, most kids with autism are more than just a little "quirky." And as much as we truly adore all the children in this film, few, if any parents of "typical" kids could honestly say, 'I wish my child were like that.'"

So, for my autistic readers, in case you haven't been kicked in the proverbial teeth enough times by people like this , here's a final blow by this guy that tells you that we should all feel sad about you being more than just quirky, and that parents of typical kids sure are glad you don't belong to them.

If I could apologize for David Kirby, I would. In the meantime, consider me a proud member of the autism community and a proud father of a son who is not damaged and does not make me sad.

One Runs Home...

2008-03-17T20:13:00.000-07:00

I'd like to make you aware of a situation with a boy named Nate Tseglin. Nate is a 17-year-old boy who lives not far from me. I do not know Nate or his family, but have been made aware of his story by other, mutual friends.
In a nutshell, Nate was forced into residential treatment by San Diego Child Protective Services against both his will and the will of his parents. Please take a moment to read this post by Kristina and some very interesting comments. Included in the comments are this link to GetNateHome.com, which gives a detailed description of events leading up to Nate's removal and what has occurred since. Please do read the timeline, which will give you a feel for the level of tragedy that Nate and his family are dealing with. Here, also, is a brief post from last week by Ginger, and excellent blogger who I disagree with on so many issues - but not this one.
So my point in bringing up Nate's plight is not to ask for pity for him (though I do, like Ginger and Nate's parents ask for prayers for him), but instead to ask for help. Is there anyone reading this blog who has any help or service that can be offered to assist the family? Several things come to mind:

Does anyone have the capacity to provide expert testimony on the adverse effects of psychotropic medications, that could be provided gratis?
Can anyone testify as to the nature and scope of self-injurious behavior, and accepted means of managing that behavior without medication?
Is there a lawyer who has expertise in any of these areas relating to this circumstance with Nate?
Are there any folks with media contacts who could help to increase public exposure - particularly in the coastal Southern California region? Added media exposure could potentially identify others who can help as well as increasing public pressure on CPS to resolve this situation in Nate's favor.

I am pulling for Nate to have a positive outcome, and I hope that someone out there feels the same way and is equipped to help to a greater degree than I. If so, please email me directly and I will connect you with the family, or direct you to someone else who can.

Now, on to another boy. My son, J. On the off chance that any of the State's agents in this situation happen upon this blog, I'd like to illustrate what can happen when a boy who is on the autism spectrum is provided the opportunity to live and learn and experience in a positive, family-based environment.
As for a brief lead-in... A few days ago, we received an email at home that our sons' Little League website was up and running, and we went to take a look at the schedules and whatnot. We noticed a tab on the screen for 'Albums', which led us to a series of pictures from Week 1. We looked over the pictures, most of which were of older kids playing hardball, pitching, sliding, making reaching catches and bullet throws. But there were a few of the T-ballers including, lo and behold, one of our own boys! (They both are on the same team as discussed here). Never mind that J is clearly running way past Home Plate to the side, and never mind that he is not exactly tearing up the turf like a racehorse - the point is that he is participating in a positive way and having a great time doing it!

Processing New Information

2008-03-11T20:52:00.000-07:00

It is with great interest that I have been following the events relating to HHS conceding the claim brought before the VICP by the parents of 9-year-old Hannah Poling.
I am a strong proponent of adhering to truth and utilizing appropriate lines of logic and reasoning to arrive at my understanding of the truth. I have stated publicly and openly for quite some time that scientific data do not support the theory that vaccines nor the vaccine preservative Thimerosal cause autism. I still adhere to that statement. I also have supported the position that one must change one's position as new evidence comes to light.
What has occurred with the Poling case (I hate to refer to it as a "case". Hannah Poling is a 9-year old girl who is a loved, valued person and deserves individual respect as a whole person without regard to what caused her condition, how that condition has manifested itself, or how that cause has been contested in any venue. But her suit against HHS does, in fact, constitute a "case") is that a legal hurdle has been presented and overcome. The VICP did, in fact, deem that the Polings had enough evidence to warrant their claim that Hannah suffered physical harm from her vaccinations at around 18 months.
I do not think that Hannah Poling flips a true/false switch on the statement that "vaccines cause autism", but I am now more likely to consider the merits of data that is presented that includes the role of mitochondrial dysfunction as an explanatory factor in the onset of autism, and furthermore that mitochondrial dysfunction could correlate to vaccinations. In other words, I am willing and able to consider new information and adapt my understanding of the scientific body of evidence as a result. This is not a direct result of the concession, but instead is a result of the focus that the concession has brought on this emerging area of research and my initial reaction to the quality of the data.
Having said all that, and with apologies since my time to complete this post is short, I have some interesting questions/issues with regard to this issue in general and with regard to Dr. Poling's post to AoA today specifically:

- I find it fascinating that a paper that was co-authored by Dr. Poling was actually used as a supporting document in the case. Is this not a conflict of interest? Is it possible to factor in the existence of a potential large settlement/award from VICP as a COI for Dr. Poling while at the same time not including the other authors in any implication of bias?

- If you read the post by Dr. Poling on AoA, you will see that he clearly avoids making a statement regarding thimerosal/autism causation that he could be questioned on. In other words, he offered an implication while avoiding a "mine-able" quote. Observe:

5. Thimerosal—On or Off the Table?I don’t want to dwell on mercury, as this theory is not why HHS conceded Hannah’s case (imo)....
My opinion is that mercury is a potent neurotoxin. Therefore, don’t inject it into kids! Interestingly, basic research studies have shown that Thimerosal toxicity occurs through mitochondrial pathways.

Is this statement a way to avoid making his stance debatable while at the same time influencing the reader to deduce that he does consider thimerosal a causative agent? Or is he simply adhering to the language of science which precludes him from making an overly strong statement in the absence of compelling evidence?

- Dr. Poling, at the end of the post, discloses numerous COI's. None of these concern me or have any effect on my opinion of his acumen as a neurologist or researcher. Can people like JB Handley say the same thing? Can all the members of EOHarm list and organizations like TACA, parents such as Jenny McCarthy and Lenny Schafer, author/journalists such as David Kirby, in general people who have backed their claims of government conspiracy over and over and over for years simply wave their hand and ignore the declared COI's simply because Dr. Poling's VICP-related efforts support their position instead of contesting it? Anyone who has observed the debate over the years will acknowledge that a primary Talking Point of the supporters of the mercury/autism theory is that a government coverup is involved. Just two or three days ago Jenny McCarthy put out a call to parents to blitz the White House with calls for Julie Gerberding's (of the CDC) resignation. But what, then does that same group make of these statements from Dr. Poling and the editor of AoA?:

-"He also would like to declare his conflicts of interest. First of all, he is the father of Hannah Poling. Dr. Poling has also accepted consultancy or speakers honoraria from Pfizer, Eisai, Ortho-McNeil, Biogen, Teva, Immunex (now Amgen), and Allergan.)"

-"Dr. Shoffner furthermore advocates, along with us, that vaccination is important even for kids with mitochondrial dysfunction. "

- I thought for a while that I was the only parent following this discussion who was thinking to myself, "This is all very valuable in terms of adding to the scientific body of knowledge, but is anybody thinking about/talking about autism in the blogosphere aside from this topic?" Until I saw my thoughts echoed by Kristina. And then I looked at the Autism Hub in general. What I saw was a huge range of people and opinions covering all kinds of topics including, but not limited to, discussion of the Poling case. Let it be known that I sincerely hope Hannah Poling is an Autism Hub contributor someday. She would fit right in over here. Not so much at AoA, where autistic people dare not tread. I wish Dr. Poling would have considered that issue when deciding where to post his response to Dr. Novella today.

I'm Not Dead Yet...

2008-03-08T19:58:00.000-08:00

Overall, it was a good day. I got up early and went to work for a few hours. Got a lot done since it was relatively quiet on the distribution end of things. I was home by noon, just in time to see Grandma and Poppa whisk J and T off to have an "adventure day" (adventure day occurs most weekends when G&P are in town - about half the year. It consists of, well, surprise adventures.) Today's adventure, as it turns out, was a puppet show down in Balboa Park, followed by some playground time, followed by Church. Then off to get some Mexican Food.
In the meantime, my wife took baby C to run some errands and left me to attack the garage. After 5 and a half hours of rearranging shelving and hanging pegboard, thinning out the garage-related inventory, narrowly escaping a Black Widow spider (thanks to my cat-like reflexes I am alive to write this blog post), and marvelling at how much Diazanon (sorry, Andrea) we have accumulated over 8 years of marriage, I was famished.
So I headed up to meet G&P and the Boys (that sounds eerily like a bluegrass band name) and get some food. After a nice dinner in which J and T both spilled their pink lemonade, it was time to drive home. This is where things became interesting.
As I pulled on the freeway, I heard sniffling coming from behind me. Now, J is typically very emotionally stoic on the surface. As can be the case with many people with autism, he doesn't wear his emotions right there on his shirt sleeve all the time like some other people. But when he decides he is sad about something then, well, he gets really sad. I look in the rear view mirror and see the first crocodile tear flow down his cherubic cheek. I ask why he's crying.
"I'm sad."
"But why are you sad, Jason?"
"I'll miss you when you're dead."
(A brief pause by me as I apply One Dad's Opinion to the situation. I quickly determine that this is a teachable moment, a rare and elusive burst of existential lucidity coming from a 6 year old whose sponge-like mind will absorb my wise words and reference this moment for many years to come. So, I reply with...)
"But I'm not dead yet. I'm right here, driving the car."
As I have my Homer Simpson d'Oh! moment wherein I realize my mouth is substantially more active than my brain at this moment, I hear sniffles and a clipped cry coming from the other back seat. Now T is in on it!
"Daaaaady. I'll m-m-miiisss you when you're...hnf ...hnf ...hnf .... dead!"
("Hnf" is that sound little kids make when they cry and they have those involuntary hiccup-like breaths between sobs). Clearly this situation is needing some better action than my first response. So, I say "Look, there's no need to cry or be sad. How old am I right now?"
T: "36" (this kid is unbelievably detail-oriented)
"Right, and I don't plan on dying until I'm at least 76, or maybe 80, or maybe even older!"
This seemed to cause a brief cessation of sobbing in the backseat. I saw my opening, and I went for it.
"Who wants to listen to pirate music!?!?"
(together):"ME!!!"
"Then say, 'Arrr, Matey, I want some pirate music!'"
(together):"Arrr, Matey, I want some pirate music!"
I cued up Flogging Molly and turned it up a bit. Now, I love Irish music. One would think I am genetically inclined I take to it so much, even though I am 0% Irish (though I do proudly associate with the winner of the Irish Blog Awards last week!). For anyone who has not heard of or listened to Flogging Molly, please disregard the horrid name and give it a listen. I could best describe it as an eclectic blend of classic Irish music mixed with punk rock, and a little dash of other genres mixed in for good measure. Each band member plays numerous instruments, and the overall effect is just awesome. Oh, and some songs sound like pirate music.
Tomorrow or the next day I'll sit down individually with J and T and talk over how they were feeling and why they thought I might die. In the meantime, its just nice to know they care.