Autism Thoughts

Recently I was looking over some of my old posts in the newsgroups (be very careful what you write, they stay there forever! How I wish I could delete some of them!) and I found this little piece I wrote on 09/14/01. I was struck by what a great piece of writing it was (which is unusual for me, I usually don't like my stuff years later), and I decided to post it here.

This piece deals with the controversial topic of the responsibilities of the autistic role models.

See below:

>Subject: Be careful with success stories.
>From: Hubert Cross

>There is consensus among us that the books of personal accounts of
>autistics do not paint a picture that is representative of the
>majority of us in adulthood. They give emphasis on the childhood of
>autistics that have successful outcomes. I haven't seen a single book
>yet depicting and Asperger adult with a less than successful outcome
>and the reasons for the failures, and you learn more from failure than
>from success.

>They leave the dangerous
>impression that everything is going to turn out OK and induce parents
>to adopt an optimism that their sons could eventually end up paying
>for with tears.

Response from Thomas:

As one of the more successful authors, I have to take offense at this. :(

Yes I know that I am not representative of the majority of you in adulthood. As anyone who knows me can tell you, I am not representative of anyone or anything. I am completely unique. This is both good and bad, and both for obvious reasons.

However, the issue you bring up is a valid one, and one I did struggle with for a long time. I would speak at a conference, take my money and run, and then on the flight home I would wonder if I somehow did more harm than good by getting up there to talk.

I did not want to give parents false hope. I did not want to lead them down a false path to believe something that was not true.

Yes, I emerged. That does not mean their child will. It also does not mean their child won't. It is no secret how it happened to me. I didn't just have help, I had the right kind of help (for me) and that is what made the difference. I am also very much aware that applying the same miracle to another child may yield no results at all. This is one thing that is so frustrating about the disorder. One cure does not fit all. Earlier tonight I had dinner with a diabetic and I was just thinking to myself as I was talking to her how great it would be if autism was like diabetes. Give the kids a shot and the problems go away. But it isn't like that, as parents who are trying secretin are sadly discovering. This is another example. That did apparently
work for one child. That doesn't mean it will work for all of them. (It may also be an indicator that there is more than a single cause of autism.)

But also I know, from being in this field as long as I have, that parents DO need hope. This does not mean it needs to be false hope. If there were no Temple, if there were no Thomas, If there were no Sean or Donna, then all those older autism books would be right: we should all crawl under a rock and die because there is nothing we can do about it. I do not believe this is true.

Parents do need hope to go on. I have seen some very tragic situations in my travels. And if those of us who are writing about breaking free were not writing about breaking free, there would be no point for those parents to continue. They need to know, not only from us, but also from other sources, that it is not hopeless. This is the only way they will be motivated to fight for the appropriate services for their children. These kids did not ask for this, and they do deserve a chance. This does not guarantee they will be growing up to write books, but it least they have a shot at it.

And I have nothing wrong with giving hope that someday, somehow, things will get better. Because in many cases I have seen, things certainly cannot get much worse.

Thomas A. McKean
Author, "Soon Will Come The Light"

Over the years, I have changed my mind and opinions on many things related to autism, as new information has become available.

But I think I still feel the same way about this.