Here We Go Again!

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

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

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

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

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

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

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 21st 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.