Growing Up and on the Spectrum

Carolyn Komich Hare is a former special ed teacher, the mother of a child on the autism spectrum, and the founder of AHEADD (Achieving in Higher Education with Autism/Developmental Disabilities) a Pittsburgh-based national group she founded seven years ago. In the April 18th Pittsburgh Live she says:

The focus with autism is on small children, diagnosing them early and getting them through school. When they get out of school, people with autism are usually neglected............

"That is starting to change. In the next three to four years, many autistic kids will be finishing school and will need help with the transition to work or higher education."

Komich also noted that "nearly all government funding for autism is directed toward secondary school-age children"----an imbalanced situation when you think it. Certainly my son Charlie is going to be an adult for far longer than he'll be a child. But look at the websites for most autism organizations or books and other resources about autism and you'll generally see that they're illustrated with photos of children, often young children.

I've frequently noted that my son has been growing a lot. He's almost 5' 6" now (he'll turn 12 next month). While he's not at the same level as his peers academically, Charlie is most certainly growing up and so my focus has been more and more on the needs of older children, teenagers, and adults. And so on Friday I went to Baltimore to speak to ANCHOR, a student group at Johns Hopkins University. ANCHOR stands for "Advocates for Neurodiversity Creating Hope, Opportunities, and Resources" and the group advocates for

a new perspective towards cognitive differences like autism as complex human variations rather than pathological states. ANCHOR presents service opportunities through interactions with college students with Asperger's Syndrome, networking opportunities with health and law professionals, and policy advocacy.

Most of the audience was college students, some of whom were on the spectrum. Three mothers were also present, with their children, one of whom was 14; the other two were adults (one of whom was not yet certain if might be on the spectrum or not). I was asked to speak along with Mike Liu, who is a graduate student in neuroscience at Johns Hopkins (and who had just turned in his thesis on Friday---congratulations!). We focused our presentations on autism and ethnicity and, specifically, being Asian American.

Mike drew on the story of Harry Potter to explain about what growing up was like for him; noted how he learned he has Asperger's while in graduate school; and also drew on wine as an analogy for the autism spectrum. (Yes, wine---so many different types and tastes.....) Mike spoke about how he came to understand his being on the spectrum, and his growing awareness of his strengths and their relation to this. He spoke about having a loud voice and of not always having been aware of this. He noted that, when working in a hospital, he had originally been assigned to the emergency room; he was instead assigned to work in a geriatic unit, and this worked out well. Many of the patients in that unit were hard of hearing and Mike's loud voice was an asset.

I spoke about the different reactions (at first) of my Chinese-American family and of Jim's Irish Jersey Catholic family to Charlie's diagnosis; noted how much my family and in particular my parents have helped us by taking care of Charlie; spoke about how it's very likely that we'll end up living in California when Charlie is an adult, as I have a large extended family that has a strong sense of taking care of its own and hope that some of them will look out for Charlie.

We both talked about the numerous myths of autism and also about the Model Minority myth.

According to the Model Minority myth, "Asian cultural values of hard work, family cohesion, self-sufficiency and a drive for success [have] propelled recent immigrants into and beyond the American middle class within a generation or two" (from the April 25, 2007, Cornell Chronicle Online). The Model Minority myth was popularized in the media about 30 years ago and has since come under fire. "The perception of one group's achievements .... then used to pit Asian Americans against African Americans and other groups": If Asian American could be so successful, it was argued, why couldn't others just do the same?

Mike pointed out that there's a similar myth at work in discussions about autism. As I understood this, it's that there's an assumption that, because individuals with Asperger's are on the "higher" end of the autism spectrum, they should "just" be able to succeed and not need services and supports, and (as the argument goes) are thus to be distinguished from those who are on the "severer" end of the autism spectrum. This is definitely a myth to be addressed and debunked. Individuals at all ends of the autism spectrum have needs, though these vary greatly, as do the approaches used to addressed them. But the needs remain.

So many of the conversations I've had with parents over the past years have centered on setting up home therapy programs, getting OT and figuring out sensory issues, finding pediatricians and dentists, preparing for IEP meetings, finding activities like gymnastics or Challenger league and helping a child get through it. On Friday, I found myself referring only in passing to these, and focusing on Charlie growing up---including some of the seering difficulties of the past year----and to what he'll need for his whole life.

Usually Charlie and I spend Friday afternoon with just the two of us. Charlie has a snack after getting off the bus and maybe does some homework, and there's that weekend feel. We usually drive into Jersey City and park at my office and walk down Kennedy Boulevard to the PATH train, and get take-out and eat in Jim's office and then take the subway to lower Manhattan, walk a ways to the PATH at the WTC station, and then, after getting back to Journal Square in Jersey City, walk back to the black car.

Me being in Baltimore for the afternoon and evening, Jim was in Jersey to meet Charlie at the bus. They went on a rather balky bike ride: Jim had raised Charlie's seat (Charlie has grown and he was doing a lot of the Barney Rubble feet-operating-the-rock-car kind of thing instead of pedaling) and Charlie was very uncertain about the added height, so the ride was not the long long one Jim was envisioning. Jim sensed that Charlie was unnerved by feeling so much higher up and kept getting off the bike and pausing. After they got home---Friday was a gorgeous day here---they went to Charlie's favorite hamburger stand and ate outside at a picnic table.

I got home past midnight. Charlie was sound asleep when I looked in on him. Saturday I had to leave early to go to Open House at my college and spent the morning talking to soon-to-be-college students/still high school students and their parents, who were all just a bit anxious at the changes ahead of them (who wouldn't be?). Around noon I called Jim just as he and Charlie were heading out for another bike ride. They were out when I got home and only came back after an hour and a half plus, with Charlie pedaling mightily and steadily, and looking taller than ever (well, he is).

Guess he's grown into that raised seat. And before you know it, he'll be growing into a new, adult-size bike.

Thank you to everyone at ANCHOR for inviting me to speak and wonderful to meet you, Mike!