Once Upon a Time, I Tried to Recover My Son From Autism
03 January 2009
(Originally published 3 January 2009, 11:16:00 UTV, at Change.org)
It seems that our list of autism controversies is proving to be, well, controversial and, in particular, controversy #2, "recovery from autism." "Recovery" is described as distracting people "from attending to the needs of autistic individuals in the here and now" and as "neither possible, nor desirable."
Once upon a time, I tried to recover my son from autism, through educational therapies and biomedical treatments. As he's gotten older, I've come to think that focusing on recovery distracted me from truly helping Charlie and truly understanding Charlie. It's Charlie's education that is our main priority as we prepare him for his future, and especially an education that takes into account Charlie's learning style, his tremendous struggles in many areas, and his strengths.
My son Charlie was diagnosed with autism just around his 2nd birthday in 1999, and I soon found myself reading every possible book and website I could find, and, in particular, every book and website that talked about things I could do now to help Charlie. He didn't talk and he hit his head with his hands and he screamed and back arched when Jim and I tried to get him to stop staring at a certain stone wall in St. Paul, where we were living then. "He's a handful" was a pretty typical comment directed towards us. Books and websites about older children and adults and (a word that left me with a pit in my stomach) group homes were glanced at and pushed aside.
There seemed to be so many things that we could do. Charlie was so little---surely we ought to do everything we could so he could be mainstreamed and not have to be in special education?
Within a few months, Charlie was in an intensive ABA program, along with speech therapy and occupational therapy. We acquired the DAN! protocol, put Charlie on the gluten-free casein-free diet, bought all kinds of supplements from DMG to megavitamins (I'll never forgot the smell of strawberry-flavored SuperNuthera) to probiotics, ordered test kits from the likes of the Great Plains Laboratory (yes, I have donned the the latex glove included in the kit to get the samples). We did "anti-fungal therapy"; tried cranio-sacral therapy (on Staten Island; it was an experience worth an essay in itself); acquired some secretin, though it stayed in my parents' freezer. We read about chelation and concluded, this was also not for Charlie (Jim kept referring back to one sentence in a certain bookabout giving a child diflucan, with the result that the child "lies motionless" and appears dead).
I went to conferences about biomedical treatments and new teaching approaches and behavior therapy. And, in search of the best education for Charlie, we movedeight times in ten years. Charlie continued to do ABA sessions at home---in fact, we only finally stopped having him do home sessions in February of 2008.
Until Charlie was 5, I did daily ABA sessions with him. I'd been trained by our various ABA and verbal behavior consultants. Sitting at the little blue Little Tykes table in the two purple plastic chairs, we did flashcards and block imitation, tried Handwriting Without Tears, did Sara Johnson's oral-motor exercises with the straws and whistles. I set up activity schedules (following these books) and monitored Charlie's progress on the ABLLS, and followed this book closely. I blew a thousand bubbles, gave him rides around the house in a laundry basket (the same one that he now carries, overflowing with adult-size clothes, to the washing machine), and played Lucky Ducks and Goodnight Moon lotto and coaxed him to "use his words" and practice saying "ducks" and "moon" over and over (Charlie was around 8 when he could say the /l/ sound clearly.)
Charlie was around 5 when I started to let go of “recovery." When I thought about “recovering” Charlie from autism, I realized that I wasn’t thinking so much about what Charlie needed as what I thought I had to do as a parent. I thought I had to do everything in my power to make it possible for him to not be in special education, to go to college, to live on his own—-if I could make sure of this (as I used to think), I could go to my grave in peace. When Charlie was 5, he needed 1:1 teaching, he couldn’t read, he still couldn’t really talk, and we’d done all those educational and other (as in biomedical) "treatments" I noted above. Our focus shifted to the day by days of teaching and being, and listening to Charlie.
I think at that point I realized that the “autism wars” were inside of me. However much I don’t see eye to eye with others about causes or treatments, the population of people who talk and think about autism all the time is hardly everyone. While there seem to be vast differences of opinion about "treating" and "preventing" autism, we’re more in this together than it might seem, or than we might wish it to seem. Jobs and housing; job coaches and support staff, for those who will need it---these are concerns most of us have. It's not everyone that I can talk to about why we need to set up a Special Needs Trust for Charlie; why I just can't hire any friendly college student to babysit; why I'm trying to learn as much as I can about Medicaid and why I really hope Obama is going to carry out his plan to empower people with disabilities, which proclaims:
"We must build a world free of unnecessary barriers, stereotypes, and discrimination .... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities."
Once I had an image of what Charlie “should” be. I wasn’t keeping my eyes focused on the real boy in front of me, the boy who likes bikes over books, and jumping into really rough ocean waves rather than curled up on the couch with one of those books. Now it's to the future I'm looking, a future where that "world free of unnecessary barriers, stereotypes, and discrimination" exists, where parents don't have to scramble and move to get their kids the education they need, and where Charlie can, indeed, live as independently as he can, as a full citizen in his community.
In such a world, I---and more than a few others---could indeed live happily ever after.