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Saturday, September 24, 2011

When boys and girls become women and men

Last week during our session, Adam was suffering terribly from his allergies. He was almost non-verbal, and his sensory reactions had him jumping out of his skin. I asked him a "visual" question (drawing myself looking concerned with a speech bubble that said "Adam, how are you feeling today?" and leaving a space for him to add himself into the picture). And then he surprised me. For the first time, he drew himself as an adult man (beard and all):

He's been taller than all of us, and sporting varying degrees of facial hair growth for quite a few years now, but up until now, he has always drawn himself as a boy of varying height ... if the situation pictured was one where he was confused or in distress or in trouble, he would draw himself as both younger and smaller than the adults.

Here is an example - a picture that Adam drew (to help him sort out his distress over the fact that he got in trouble for fiddling around with scissors in class) when he was 17 years old and well over six feet tall. The other person in the picture is a female staff person who in real life was at least a foot shorter than Adam ... but not according to Adam's inner perception ... she was the adult who made the rules, and he was the small boy who broke a rule he didn't know existed:

Last week's self-portrait shows us that Adam is finally starting to view himself as an adult, a significant advance ... a change that crystallized a topic that I've been thinking a lot about lately. What kind of adult life waits for the growing population of ASD individuals moving past their 21st birthday? If they have not already dropped out of traditional school, they reach the end of that stage of education ... and graduate to ... ??

... and that's the problem. Over 20 years ago, I started into my work with the ASD population by working with adolescents and young adults in a high school program that aimed to take students from school to work. We did communication and social skills training on the job sites, and educational assistants doubled as job coaches with back-up from teachers and other professionals. A number of students ended up with job placements that lasted past graduation. At that time I was an optimistic young speech pathologist, knowing that this was a great new program, and believing it would only expand and become more accessible and effective over the years to come ... I thought that in 10 years time (and certainly in 20), most young adults on the spectrum would have school to job support and job coaching that would stretch into the years following graduation ... I was wrong. Political changes and cut-backs in the intervening years paired with ever-increasing numbers of identified ASD students have led to available resources being totally over-whelmed, with new resources few and far between. Good-hearted and good-intentioned professionals continue to try to fill this gap, but it's a bit like trying to catch a waterfall in a teacup.

A friend within the local autism community (a mom of a young adult with AS) sent me the link for this story that appeared in the New York Times this past weekend:

Youths with autism prepare for a place in an adult world

The story follows a young man with autism who is reaching the end of his time in a school program, similar to the one I worked in years ago, that aims to prepare teens with ASD for adult life (including employment and independence). This young man has artistic talents, but it's unclear whether family and program staff will be able to help him find a job (that he can keep) where he can use his talent and make a living.

The challenges faced by Justin (the young adult in the NY Times article) are all too familiar to professionals who work with the young adult (and older adult) ASD population and their families. Young adults with ASD don't disappear when they walk out of the school doors at age 21. They are smart people who need to keep learning, who need to have an outlet for their talents and skills, who need the opportunity to live as independently as they are able; and the families need help to have this happen.

In my opinion, the boundaries of the problem stretch beyond what can be offered by public services alone. I think effective solutions will require a creative re-thinking of how individual people and businesses can open their doors and integrate these very talented and unusual people into the fabric of society ... and how to make that happen is what I've been thinking about this fall ... the young optimistic therapist still lives inside me, and I think it can be done ... stay tuned, and I'll let you know if I get any good ideas.

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