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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.

Wednesday, September 7, 2011

..... some social humour from one of my engineering brothers

Well, I make my family read my blog (I'm not too proud to use the social pressure of familial obligation to increase my readership). In response to yesterday's post on socializing and the engineering slant on life, one of my brothers sent me the link to this youtube video ... an informational description of the construction of a pop song .... he found it funny, I found it funny, it may or may not tickle your funny bone, but here's the link so you can see (hope this works):

daVinci's Notebook - title of the song

Tuesday, September 6, 2011

To socialize or not to socialize .... that is the question

Many of the people who choose to work in the "helping" and teaching professions are very out-going, chatty and sociable people. Usually this works to everyone's advantage as most jobs in these fields involve friendly interactions and discussions with many different people over the space of a work-day. Over time, "folk wisdom" in the therapy/teaching sphere has formed an image of what "normal" social behaviour looks like ... and it looks a lot like the chatty interactive social style of the extroverted people who dominate these professions. Programs that are set up to teach social skills often have the goal that participants will eventually match this "norm".

But maybe that's not what's normal for everyone. If you're working with people on the autism spectrum, perhaps a better "target" social style is embodied by an engineer or a scientist or a math major. I know (and like) many engineers ... my dad, my brothers, my brother-in-law, my uncle, not to mention all the engineering and computer guys I meet in the course of a work day ... and while engineer stereotypes are over-simplifications, they also hold a fair chunk of "real-world" truth. The best thing about engineering humour (of the printable kind) is that the engineers enjoy it as much as anyone (although their comment is more likely to be "well of course, that makes sense"). Here is a comment on engineers and social interaction that I think fits this discussion:

"Engineers have different objectives when it comes to social interaction. "Normal" people expect to accomplish several unrealistic things from social interaction: stimulating and thought-provoking conversation, important social contacts, a feeling of connectedness with other humans. In contrast to "normal" people, engineers have rational objectives for social interactions: get it over with as soon as possible, avoid getting invited to something unpleasant, demonstrate mental superiority and mastery of all subjects."
 Does this sound like anyone you know?

a quick sketch I made for one of my teen clients
to explain the term "breaking the ice"

The teen-age years are excruciating for many of us ... for those who are struggling with the social side of life, they can become unbearable. Many teens with a diagnosis of AS become weary of their lack of social success and retreat to their rooms, pessimistic about their chances of having a rewarding and enjoyable social interaction, no longer willing to risk public social rejection. They don't want to be labeled, they don't want to go to a "special" group, they don't want to have their social errors highlighted and corrected in public ... they just want to have a friend to spend some time with when they're in the mood for company.

I have run a variety of social skills groups for the ASD population over the last 20+ years. In 2003, we started the Typical Teens groups for adolescents with a diagnosis of Asperger's Syndrome.

for more specific information about this program
(clickable link on the homepage)

The cornerstone of this group model is the inclusion of trained peer mentors - in my experience, it is almost impossible to create an authentic social situation if no one in the group (besides the person running it) has intact social skills. Peers act as models of "usual" teen-aged behaviour, and create a safe "social bubble" where the AS teens can take social risks without risking public embarrassment. Our peer mentors are chosen to model a mixture of social styles - relaxed jokers, quieter bookish kids, sporty active guys, eccentric intellectuals, social butterflies. The facilitators work at arms-length, helping each person to find their social match(es). It is always interesting to watch the transformation of the AS teens over the 8 week sessions - as their (reasonable) social anxiety is counter-acted by new positive social experiences, they start to relax, to smile and laugh and obviously enjoy the company of their peers.

Which is, of course, the point of a social skills group - to find your own personal brand of "social mojo" - to actually begin to enjoy social interaction and be convinced of the benefits. The group therapy model is well suited to supported experiential learning - "hands on" practice of social skills in a "real world" setting with back-up. Feedback from past group participants (and their families) tells us that many of the social changes we see in this model carry over into their daily lives after the group is done.

(In my professional experience, de-constructing social errors in painful detail to pin-point the exact moment of social disintegration is more of a private activity (one ASD person, one support person) - I doubt than many of us would happily agree to share our most excruciating social failures with "the group".)

Of all of the evaluations we've had from participants over the years, the following comments by an AS teen participant are my favourite endorsement of the Typical Teens model:
 "Well, being with other people isn't as bad, isn't as boring, and isn't as a waste of time as it may seem ... it's still pretty interesting in a different way ... and it was enjoyable. I would recommend these groups because it would help develop other people's social skills and their understanding that company is a good thing and that being with others is quite worthwhile"
.... an engineer's perspective if I ever heard one ... but a happy engineer who is convinced that there is a point to the exercise ...