What I Should Have Asked HHS Secretary Sebelius
Friday afternoon found me sitting in my office. Jim does not teach on Fridays and is able to pick up Charlie. So I was able to listen in to a conference call with U.S. Health and Human Services Secretary Kathleen Sebelius about the Obama Administration's initiatives in autism research, treatment, services. As reported in Disability Scoop, out of $5 billion awarded to the National Institutes of Health to study cancer, heart disease, and autism, over $100 million has been allocated for autism research. It's noted that this is the "single largest amount of money" allocated for autism research and that autism was the only "disease"–that was the word used on the conference call—specifically singled out for such funding
Also on the call were: Tom Insel, Director of the NIMH and Chairman of the Interagency Autism Coordinating Committee; Ileana Arias, Acting Deputy Director, Centers for Disease Control and Prevention; and Peter van Dyck, Health Resources and Services Administration Administrator for Maternal and Child Health. Two soon-to-be published studies on the prevalence of autism were highlighted:
(1) A Pediatrics study by the Health Resources and Services Administration (HRSA) that will be published early next week and that discusses how new methods are being tested and new models developed "to better help us prevent and treat autism." This study also looked at results from the National Survey of Children's Health (2000).
(2) A soon-to-be-published report from the CDC that looked at data from the Autism and Developmental Disabilities Monitoring Network. From initial and preliminary analysis, it was noted that there has been an increase in the estimated prevalence of autism spectrum disorders, with approximately 1% of children in the US diagnosed with ASDs. It was noted that this does not mean that here is an actual increase, but may also be due to "methodological differences from earlier surveys and increased awareness." The rate was reported to be 1 in 150 in February of 2007 according to a CDC study; New Jersey was noted as having a prevalence rate of 1 in 94.
The increase in the prevalence rate of autism was the main topic discussed during the call. Listeners could ask questions afterwards and I hesitated. As you know, I've been pretty fired up about Charlie's school situation having fallen apart and, while I'd like people to know about this, I decided to listen to what other people had to say first.
There was a question from Peter Bell from Autism Speaks about the prevalence rate and how we still don't know what is causing it to rise. There was a request from Lee Grossman of the Autism Society of America to keep the need for services in mind. An official from the Department of Education asked that education be included in discussions about autism as education plays a large role in the well-being and health of autistic individuals. The final comment also noted that the Department of Labor should be included in discussions about autism, as employment is such a key concern; this commenter also noted that not only the needs of autistic adults call for more attention, but also that those who are transitioning into adulthood—adolescents and teenagers—need more attention, too.
That was the point I wanted to make had I been able to ask a question (I dialed in too late). With Charlie's very difficult middle school experiences on my mind, I wanted to say that we need to focus a lot more on the adolescent and teenage years and not simply see them as a "transitional period" or a gateway to adulthood. I've been reflecting again and again about how, when Charlie started middle school, his teacher and the school put a huge emphasis on "what is he going to do when he's an adult? he will be an adult before you know it and what if he has no job skills or self-help skills? where do you want to him to be ten years from now?"
Of course those are seriously important questions that Jim and I have been thinking about way before Charlie ever set foot in middle school. But the answer does not simply lie in turning a child like Charlie, who is developmentally delayed, into a mini-adult; the answer does not lie in teaching him "prerequisite skills" for adulthood. Charlie is still very much a child and he needs nurturing along with high expectations for what he can learn and do. It took him longer than most children to learn preschool skills, so why be in such a rush to have him learn—at the ripe old age of 12 (keeping in mind that Charlie is the youngest student in his current class)—to be an adult now?
After the conference call, Jim called and I met him and Charlie in the black car on JFK Boulevard in Jersey City. We dropped Jim off just before we got to Journal Square (he was to lead a walking tour on the West Side piers tonight) and then went to the fancy-schmancy mall to pick up a computer that had needed repairs. (Yes, that's Charlie in the photo with an image of iPod nanos behind him—same as the iPod that he put in the garbage earlier this week.) We had to wait for awhile and Charlie stood quiet and serious.
It just so happens that there's a Qdoba right next door to the Apple Store and, once I got the laptop, thence did we head. Six boys, possibly Charlie's age and definitely shorter than him, were in front of us in line. They got quesadillas and talked about how you could get cheaper sodas from the vending machine outside. I ordered Charlie a burrito and he chose a brownie and, after trying to sit in a booth opposite a blond-coiffed, stylishly suited woman, sat at a table. The six boys were behind him and they laughed and ate and pushed at each other. One Latino man sat in the booth beside them; to Charlie's and my right were four 20-something guys (one whose orange shirt said "Los Angeles County Jail") talking about The Office and actors in comedies. They kept their burritos neatly folded in their tinfoil wraps.
Charlie chowed down immediately starting with the brownie. I saw one of the boys stand up in the booth and squirm out, and three others followed suit. One boy called out "hey! hey!" and yelled that he was still finishing, but the other four were out the door (I saw them gather around the vending machine). One boy got a refill of his soda and came back, glancing at the four who had left.
Charlie ate every last bean and dab of guacamole and threw away the trash when I directed him. We walked through the mall and the Neiman-Marcus cosmetics section (torture—for both of us) and then (after getting gas—the orange warning light reminded us that we needed to, fast) we went home. Charlie took off his shoes and, after asking me, carried a really old computer (the first iMac) into his room. I walked in to hang up some clothes in the closet and found that he had found his old case of Hot Rod cars and selected his two old favorites, a yellow school bus and a helicopter. He asked to put on his socks a half-hour later and we went for a walk beneath a setting sun, passing many a dog and their owner (Charlie was ok about them, as they were all on leashes). Once back inside, he told me "bedtime," jumped into bed, and was asleep by 7.53pm.
He's a big boy growing up, and a little boy still.
He's a darned swell pal to eat burritos with.