I just finished a book which was very thought-provoking, "Weather Reports from the Autism Front" by James C. Wilson. He writes about his 26 year old son, Sam, who is autistic. Of all the books I've read about autism, this one was the most tuned into the autism acceptance movement. The author reads a lot of blogs written by autistic adults, and works very, very hard to give his son the best life he can. At times, it seems like he does this to the detriment of his own life and, from when his son was younger, to the detriment of his other two children's lives. Sam comes first, in all cases, it seems, whether he is interrupting the author's teaching, hitting the author, demanding attention during the few times the author gets to talk to his adult daughters, etc. I felt a little put to shame by his devotion, but I can see where he is coming from. He also talks a lot about the major autism organizations, like Autism Speaks or ASA, and doesn't like them much, as their focus is very much on fundraising to find a "cure". I can agree there. The point I most liked was about how on days like Autism Awareness Day, you would think there would be events for actual autistic people, but instead there are fundraisers, golf tournaments, walks----things to raise funds and awareness, but not to help those of us with lives already affected by autism.
The book also pointed out something I hadn't thought that much about. When there is talk about finding a cure, or a cause, of autism, that is not really talk about curing the kids who currently HAVE autism. It's about preventing more children being born with autism, through pre-natal screening, or it's about figuring out very early a child might be prone to autism and preventing it from ever really showing up. It's like saying "It's sad you are in a wheelchair, but instead of creating curb cutouts and putting elevators in buildings, we are going to work hard to make sure no MORE people are in wheelchairs" Admirable in a way, but it pretty much makes the person in the wheelchair a sad side note.
I loved it that the author found his son interesting and funny. Although he says a few times Sam is low-functioning, I guess that would make Janey EXTREMELY low functioning, as Sam can read, was doing regular schoolwork until 7th grade, uses words like "oxymoron" correctly and so on. But Janey, even without being able to do things like that, is amazing sometimes. This morning, as she did her random line reciting all the way to school, I was in hysterics over and over with her phrase choices. One was "Apprehend that criminal! Wait, he's not a criminal, he's a Care Bear!" She also says much of the Lord's Prayer now, but inserts a lessor-know line in the middle "Along came a spider, and sat down beside her", which, if you are listening mostly to the rhythm of the words, fits rather well. We never know what she will come up with next, what song will be her new favorite, what show will delight her next. I think sometimes we parents of children with autism feel we are supposed to not enjoy the quirky traits, that anything that isn't "normal" needs to be extinguished. That's an area where I am very with the autism acceptance and pride people. There are parts of being autistic that are amazing, interesting and unique.
However, I don't think the author, or some of the autistic adults quoted in the book, truly get autism like Janey's. I hope Janey will be able to self-advocate some day, but I am not sure she will. I am not going to dismiss the lives of my sons to solely concentrate on Janey. I think Janey deserves as happy and full a life as she is capable of, but so do they. And so do I. I want a world where Janey is accepted, is loved, and is cared for, and where I can feel pride in what she can do, while still admitting how hard what she can't do is for her, and for us. I guess I want it all. And who doesn't, for their kids?