Way Beyond Awareness

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

"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

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

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

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

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

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.