Sunday, April 6, 2008

Autism Awareness Argument

One would think there would be little controversy in the idea of autism advocacy and awareness activity. As the dad of a 15 year old autistic boy, I occasionally peruse blogs that deal with autism and have found that there is quite an interesting argument that goes on. Many high functioning autistic people who blog or comment to blogs are offended by the tenor and tone of much of the message delivered by autism advocacy groups such as Autism Speaks. Their point is that when autism is described in catastrophic terms and as a prison sentence to family members of an autistic person, that it dehumanizes them (the autistic person). Well meaning statements such as "we want to wipe out autism" are taken to imply that an autistic person's life is not worth living. Wiping out autism means wiping out autistic people. The advocacy groups reply that of course that's not true, they are simply trying to raise awareness and research funding to combat the autism epidemic. (Yes, I believe its an epidemic).
My view: Actually, I sympathize quite a bit with the offended group. While I applaud the fact that autism is finally getting the attention that it deserves, I am quite uncomfortable with the messages and comments of the people involved in the news stories. The lives of the families are often described as hellish. The costs in terms of time and money are portrayed as enormous. And virtually all of the stories emphasize that intensive early intervention (before the age of 3) is needed in order to reverse the course of the condition and to "improve the outlook" for the autistic child. The implied message of the call for early intervention is that if we work hard enough, early enough, we can make our child non-autistic by kindergarten time. This approach is documented in books such as "Daniel Isn't Talking" by Marti Leimbach and by Jenny McCarthy's (of MTV fame) latest book.
Well of course, early intervention won't help me or my son at this point. He's 15. Currently, there is still more unknown than known about autism. Early intervention is great and I believe that it can significantly help autistic kids navigate better through life. I don't believe that it can make them non-autistic though. The cause or causes of autism is still unknown. There is no medication proven to help with some of the limiting symptoms of autisms. The only "treatments" for autism are behavioral, not medical. And autistic kids do progress on their own as the grow (similar to "regular" kids) so it is difficult to attribute "progress" to any particular therapy or regimen rather than normal growth.
In addition, the news stories describe a much more dire lifestyle for autistic families than the one that I live. My son is great. He's a joyful kid who clearly loves life. He has his moments of course and we do have extra burdens that we would not otherwise have. But our life is quite normal. Maybe we're neglectful, but we do no extra therapy, no special diets, and no medication. My view is that he is autistic and there's nothing I can do at this point to change that. My job is to make his life as an autistic person as good as it can be. Thankfully, in our county (Prince Georges County, Maryland) there is an excellent Therapeutic Recreation Department that provides us needed services including a great aftercare program and wonderful recreational activities for Kevin. This is where I want the autism awareness movement to start focusing. More on helping existing autistic people rather than trying to "eliminate" autism. I'm terrified that the primary focus of autism research will be in creating a prenatal test for detecting autism. Because we all know what that implies. That is why some autistic people and their families get upset by some of the language used by autism advocates. I understand that these words are getting misinterpreted. But I also want the world to know that my son is fine as he is. I would love it if some treatment came along that could make him better able to live an independent life. But if he stays autistic, he is still a worthy human being deserving of the same things "normal" people are. He deserves a shot at life.
So I hope that the autism advocacy groups examine both their language and their mission. Yes, continue to try to find the causes of autism, but no, do not demonize or dehumanize autistic people.

1 comment:

AM Kingsfield said...

No simple way to approach a complicated matter. Your son is wonderful and his life is a blessing to more people than just your family. I think you are doing a wonderful job with him. He enjoys life more than most "normal" people I know.
If autism triggers - like perhaps faulty vaccines - can be eliminated, then I'm all for it. If pre-natal testing can get specialists ready at the birth to assist, then great. But pre-natal testing has a very dark side, and not just for autism.
I've heard similar arguments from the deaf community, especially in regards to the cochlear implants.

Under what circumstances would you terminate a pregnancy? Can only perfectly healthy children be born? What about the genetic inclination to be gay? predisposition to cancer? sickle cell? color blindness? deformities? Where does all this knowledge lead us?