The first person with autism I met was three years old. I was hired to help with his ABA (applied behavior analysis) therapy. The goal was 40 hours a week, and like Catherine Maurice in her book "Let Me Hear Your Voice" (which, by the way, I was given a copy of) we were to rescue this boy. On good days I saw it as a chance for him to learn in a way that made sense to him and I saw the joy he got out of being successful. On bad days I viewed it as an attempt to beat the autism out of him before he reached the magic age of 5.
I've met many more people with autism since then (and retrospectively diagnosed an old college boyfriend with Asperger's.). Currently, I'm full time in home waiver staff for S., a 14 year old with severe autism. His mom went the ABA route when he was little and I thank her for it all the time. At the very least, he listens, he knows what "stop" means, he knows there are people in his world, and he is a very loving and affectionate boy. He follows directions, he unloads the dishwasher, he can hold himself together when he needs to. He's non-verbal and probably one of the most autistic people I know. He's a joy. No, he wasn't cured, but we're realizing he wasn't broken. He was given therapy and education that targeted his disability and it shows. He is very happy (except when he can't listen to Shakira or Dean Martin).
Currently, we're doing SONRise with him. I have been enjoying playing with him. I purposely try to forget everything about what I'm supposed to be doing, even the SONrise instructions, and sit and parallel play with him. He twirls things. I sit beside him, twirl things, build things, offer him my Lego's and kentix (sp?) for him to twirl. I sometimes imitate his sounds, I talk, I sing.
He usually kicks me out of the room when I start singing. Everyone's a critic!
The autism organizations are impressive. When S was diagnosed, the incidence of autism was thought to be 1 in 10,000. Now it's estimated at 1 and 166. This is an epidemic. This is a social force. And god bless the parents for getting so many things passed -- the Combating Autism Act, the ABA centers, insurance that will pay for ABA and other autism therapies.
But, it's time to use good social skills and think about sharing. ABA started out as a treatment for autism and other developmental disabilities. I hear over and over about kids who can't get into ABA programs because they have a different disability. Worse, I hear of children with autism diagnoses that might actually have another condition, like Angelman Syndrome, or another genetic condition. The parents don't test because they will lose services. The reason for testing is not to limit your child, but to have more information on health and therapy issues.
Kids with cerebral palsy and Down Syndrome and other disabilities didn't just disappear when the autism epidemic started. In fact, parents of kids with developmental disabilities and people with developmental disabilities themselves built the ARC, United Cerebral Palsy, and other advocacy groups. They passed the ADA, the IDEA, waiver. They led the movement out of institutions and into the community. When the autism epidemic happened, there were networks already there for parents to build on.
Autism is a complex phenomenon. Both of the boys I have mentioned here were typical children until their vaccinations. Both spiked fevers, were sick for days, and never recovered.
I also am very interested in the genetic aspects of autism. I am currently studying Angelman Syndrome, and there is a 15th chromosome link in both conditions. (almost always in Angelman except in 10%-15% of cases where none can be found, but is suspected. In autism, there are many genes implicated, but a small duplication of the mother's 15 chromosome is linked to some types of autism). There are not a lot of genetic tests done in autism -- most diagnoses are based on clinical observations. But those genetic tests, if they were routine, would help us understand so much. The Angelman community is well-versed in genetics because doctors consider it primarily diagnosed by genetics (although experts say that the clinical diagnosis should be first). Do kids with Fragile X-linked autistic symptoms behave differently than kids with duplication of a small bit of chromosome 15? The parents could be essential here in helping us understand this, the way that parents of kids with AS are essential in helping us know whether kids with deletion positive AS are different than kids with uniparental disomy Angelman Syndrome.
But I see great pressure within the autism community to NOT test. What if another syndrome is discovered? A child loses ABA intervention. What if those babies that were sickened by the vaccinations also have a genetic component to their autisms? Does that mean that there's no case against the vaccines? I don't believe that's valid -- if you are mercury poisoned, you're mercury poisoned. But I know how juries and courts and the media will play it -- that genes are destiny and that the vaccinations couldn't have changed anything. I understand the pressure, I really do. But, wouldn't you want to know if your child had a genetic form of autism?
I understand their positions, I really do. I love the boy I work with. I love that because of autism networks, he gets the intervention he needs. I love that so many people are being helped by ABA and other programs. I love the fact that when he was a toddler, his mom sat in the doctor's office with him, wrapped her legs around him, and refused to leave until the doctor wrote her a referral to the specialist. That's the kind of thinking and action that has got the autism community this far.
But, well, share!!!!!! Do I have to write a social story on this? ,Parents and autism organisations: Your kid might recover. That would be great. But your kid will still be a citizen of the world that includes people with and without developmental disabilities. Everyone in this world deserves an education targeted toward their skills, regardless of diagnosis. Those kids with cerebral palsy and Down Syndrome and Angelman Syndrome and Williams Syndrome and Prader-Willi and every other syndrome I can name and many more I can't -- are going to grow up and be your kid's neighbors. It does not serve any of us to have them undereducated.
We can compete for limited services, or we can join together and demand MORE services. It might be time for this movement to consider where it wants to go and who they are willing to sacrifice to get there.
As an incidental, the book that started this all, The ME Book: Teaching Developmentally Disabled Children, by Lovaas, was a description of interventions on children with all sorts of diagnoses -- not just autism.