Sunday, October 7, 2007

Autism Dad


I recently finished the novel "Daniel Isn't Talking" by Marti Leimbach and it got me thinking. Its the story of a mom who discovers her 2 year old son is autistic and of her battles to improve her son's prospects. Some of it hit home. Other aspects of it disturbed me a bit. The husband/dad character is an emotional coward who abandons his family. Usually, when a character is portrayed as completely evil or weak, I see through it as a manipulative maneuver to created false emotion within the story. But this character frustrated me just as he did the heroine. Anyway, the mom in the story goes to great lengths to battle her son's autism. She sees expensive specialists and therapists and works hours a day doing drills and exercises with her son. She is dead set against her son going to a "special" school. Eventually she discovers a therapist who makes house calls and does intensive hands on drills to improve the child's skills. Naturally they eventually become involved romantically which makes the hours of therapy much cheaper and convenient.
I'm the father of a 14 year old autistic boy. I don't spend hours upon hours trying to make him non-autistic. He is in a regular school but in a special education class that doesn't integrate with the other kids all that much. He probably won't be able to live on his own or to drive a car. I guess that at some point I accepted that he was autistic and stopped trying to fight it. We try to work with him to make him more conversational, but once we start certain drills, we rarely stick with it. I can't be on this high level alert battling things for more than a week or two.
Anyway, I've concluded that there's no magic formula out there. The best we can do is try to make Kevin's path a little easier and try to get him involved in things that he enjoys. Putting him through exercises and drills that he hates would make him and us miserable. We tried medication once to try to counter some of his compulsiveness. It was disastrous and left me doubting the medical profession when it comes to autism. I still do. I have a pediatrician friend and sometimes ask him about autism research. Whenever I do that, he tells me that vaccines don't cause autism. Fine, they probably don't. Its time to move on from that. I'm not a conspiracy theorist, but I have felt for a long time, that the emphasis on autism research has been on exonerating vaccines as the cause of the autism epidemic, rather than actually finding the cause. You can still find articles that dispute the rise of autism cases claiming that it is just a result of better diagnosis. Sorry, but a kid with Kevin's symptoms would have been diagnosed with something even back in 1975. Its odd because often these suppositions are embedded in articles about social services about to be flooded with a ton of autistic teens and adults requiring services. If the rise in autism was just due to diagnosis changes, the total number of people requiring services would be the same. The fact is the medical profession knows nothing about autism. They don't know the cause, they don't know any effective treatments, they don't have any physical "markers" to identify autism. The diagnosis of autism is entirely based on behavioral observations. Autistic kids do certain things and don't do others.
Anyway, as a lapsed Catholic, I guess I'm looking for absolution. I don't fight with autism. I accept it. I send Kevin off to school each day and hope they're doing a good job teaching him and preparing him for the best future he can have. I sometimes get it in my head to work with him at home a certain way, like to print out a list of questions for him to read and answer for me. But I'm inconsistent with my efforts and usually stop after a week or 2. We don't do specialists. Instead we send him to special needs recreation programs that he loves like swimming and the teen social program. I hope he learns from them but we do it mainly so that he will have fun and also selfishly for some time to ourselves. I'm looking forward to a skiing program offered this winter for Sunday afternoons. We'll get several hours a week to ourselves but also, I think he will love it. So he has fun activities not therapy. Except for a week or 2 in the summer at Camp Greentop (a special needs camp), we don't have any extra expenses for Kevin's autism. I once had stomach issues and a xanax prescription from the stress of it all. I don't anymore. We just muddle through the days as best we can. Kevin is Kevin. He's a great joyful kid who clearly loves life. He's autistic. The future is uncertain but we should be able to cope. I'm not going to fight it. I hope thats ok.

2 comments:

iamnot said...

Dan,

Drawing lines is what it’s all about I think. How much helping is actually helping and how much is simply ruining quality of life with constant pressure and with the loss of a positive parental relationship.
I struggle with drawing those lines every day with my son. Over the years, I’ve begun to let go quite a bit. Yes, there are things I can do to improve my son’s prospects for a happy and independent life…but there are limits, and when I try to hard and push past those limits, I’m doing him, and my entire family, a terrible disservice.
Your son is lucky that you are engaged with him and doing the best you can.
Good luck to you and Anne.

greeny said...

This was a very honest post and I find your route of life you have taken for you and Kevin to make complete and utter sense.
While I was reading about the mother in the book drilling her son, I though about how tiring and stressful it must be for a child AND HER.
We have no autistic children in our circle so until now reading yours and Anne's blog plus Iamnots, I had no info. I know vaccines are coming under fire for the cause of autism. Other than that I am clueless.
Pat yourselves on the back for being caring and sensitive parents. I am admiring you both from afar.