Adults with ASD

The Advancing Futures for Adults with Autism (AFAA) Town Hall meeting held on November 13, 2009 was the second of three meetings held by some of the parents of those with Autism to consolidate and submit a national agenda to the U.S. government to improve the lives of future adults living with ASD. In my opinion the results of these parents? efforts will help improve the lot of all those struggling with Autism Spectrum Disorder (ASD).
I credit this group with my own diagnoses with ASD three years ago at age 54. Without that I likely would still be floundering, probably homeless and possibly incarcerated as a social deviant. I am indebted to the efforts of this group and look forward to further improvements in my life as a result of their tireless efforts for their children.
The following attempts to summarize the Chapel Hill, NC Town Hall meeting from my perspective as one with ASD. The demographics of the over 1200 attendees were gathered at the beginning of the meeting. The predominant participant (67%) was either family members or service providers. They were well educated (advanced degree)(83%) white females over the age of 45 (63%) with a household annual income over $75,000 (58%). Seven percent were on the spectrum and 5% made less than $25,000 per year. You might think the 7% on the spectrum to be a low representation given the purpose of this meeting; however this number was up from 2% or 2 out of 100 attendees for the first of the three meetings held January of this year to establish a national agenda.
Half way through the 7+ hour meeting I became stunned, frozen, petrified, paralyzed; for what reason I do not know. I became overwhelmed possibly because of the immensity and complexity of the approach to the subject matter. Words were flying everywhere. Five tables of 10 people each were in constant, simultaneous discussions. The voice from the Chicago host site blared over the speakers. I became confused over the rules and the process in progress. We were to confirm submitted suggestions to be included in the final agenda statement for US legislation. They were all good ideas so they were all confirmed.
At first the process did not seem to solicit complimentary additions to the four discussion topics; and then it did. Somehow new line items were added and voted upon within these topics. Further statements were ferreted out from comments presented from across the country and included in the summary as such. Some comments were credited to those on the spectrum. I presented suggestions as one on the spectrum, however not only was there no way to tag them as from an Aspie they weren?t submitted as far as I could determine. I could see others at my table talking, but missed half of what they were saying for all the noise and poor projection. Throughout the first half and later in the day I would toss out my opinions during what I thought were appropriate times. It began to feel as though my timing was off or that my ideas were too radical. I could see concurrence with my ideas, but as so many times in my past my words fell to the floor.
I wanted to explain where there were pitfalls and omissions in the concepts, but to no avail. What I was concerned about was that when the word ?adult? was used it was often implied that adults with Autism were no older than 22 years of age. I wanted others to see there were many adults with Autism over the age of 22; perhaps over three times as many. If the study concluded in England and by CDC are correct one in one hundred adults of all ages are on the spectrum ? the same number as children on the spectrum. The only difference is the younger group has official diagnoses.
There are ASD adults within our society struggling with coping within our neuro-typical (NT) world that have no idea the source of their problems. Many are homeless and some incarcerated. I fail to understand how a consensus could be drawn without including those of all ages with a diagnosis, self-diagnosis or even no diagnosis. A recent congressional hearing by experts lasting over two hours never referenced those with ASD over the age of 22. In fact, they presented a proposal excluding ASD persons above age 22. A congressman was the sole person throughout the hearing to explicitly address needs for all adults with ASD.
I wanted to suggest the following: As I worked for 35 years and progressively became intolerant to those in the work environment I consistently wished for training in ?office politics.? If targeted companies, say GE, were to announce online classes in "office politics" were available during your own time; guess who would sign-up? Screen for ASD and what do you think you will find?
Next. It has been determined that less than 20% of those on the spectrum are employed. Of those, about half are under-employed. Why is that? Might it be that American culture in the work environment (and out) is intolerant of neuro-diversity? You bet it is! The work world is highly competitive and crammed with predators, even sociopaths, not to mention bullies. Now, would you consider Aspies to be the victims of their attacks? No doubt about it. Does that create an unacceptable situation? You?re right; it does.
Can Aspies be taught to become more socially savvy? ?Yes, I think so.? Will that solve the problem? ?I don?t think so.? So, what needs to happen? I suggest a cultural change needs to materialize that accepts and even encourages those with ASD to succeed. Suppose Einstein and Newton succumbed to the rejection of society?
Fortunately, I believe, that change has commenced within our society. As those with disabilities have been mainstreamed in the classroom with their peers this change has begun! Children have begun to learn and accept neuro-diversity as just the way we are. No longer do they need to fear and reject those with differences just because they are different. So, the question becomes; what do we need to do for those over 22 years of age NOT on the spectrum? Once the playing field has been leveled, ?Let the games begin!?

http://www.afaa-us.org/

Hi Charles, and welcome to IAN.

I also attended one of the satellite sites of the AFAA meeting - the one in Washington DC. (In fact, I plan to write up some notes about that today for our website.) It was a lightening speed process, sometimes overwhelming, but very dynamic and exciting, just as you described.

You are so correct that adults of all ages, as well as at all levels of functioning, need to be considered as a national agenda for how to empower and support people with ASD is forged.

Just as you were saying, I have found that work place issues are rated as extremely important by the adults with ASD I have spoken with. Your idea of a class in office politics is an intriguing one!

One thing is clear: to address the needs of this population, we will all need to think creatively.