Did I write that? Old thoughts, new thoughts.

A while ago I wrote a book (Learning to Live with High Functioning Autism. Jessica Kingsley Publishers 1999) about autism in which I said,

“The third thing that I have noticed is how diverse the personalities of adults with Autism are. Abrasive, apologetic, sympathetic to others, self centred, shy, confident. Just like the rest of us, with strengths and weaknesses. Each personality emerges unique, often after immense struggles. And, when you read the life stories there is often very little clue in a person’s childhood about the way they will turn out.
One young woman with Autism described two children, identical in every respect. They have the same problems. They inhabit the same environment. But they react in different ways and their conditions are interpreted differently. One is labelled autistic, the other is gifted but odd. In other words, there is no point in trying to pick the winners or match services to projected outcomes. The only way to pick a winner is to back them all. “

I was quite pleased with this passage from my book when I wrote it back in 1998. Now I am not so sure. I thought I was advocating equal rights for all autistics but the justification for this was the questionable premise that this was the only way to discover all the gifted and talented autistics who would benefit society. Once we have identified the “winners” what happens to the “losers” after that?

That thought never occurred to me when I wrote the passage above. I was arguing for services for all autistic children and had not thought really about the situation for autistic adults apart from arguing that,

“any adult services that are put in place need long term planning and adult services do need to be put in place. As I mentioned earlier, parents should not be expected to assume the burden of adult care. And the more independence the adult with Autism can achieve the easier the transition that will have to be made after the parents have died.”

In retrospect this looks quite horrible: glittering prizes for the few and the “burden” of community services for the rest, apart from those who will need even more burdensome insitutional care. That was not my conscious intention. I was writing from a parent’s point of view, a poor put upon parent who was forced to fill the gaps in a creaking system that was failing to provide the services that I wanted to meet my agenda for my child. My agenda at that time was to teach my son how to please other people, fit in at school and stay out of trouble so he could join the priveleged few who made it through the system. It was only much later that I learned to listen to my son. As I pointed out in another book (Asperger Syndrome in Adolescence edited by Liane Holliday Willey, Jessica Kingsley Publishers 2003)

“The best advice that Mattie got was from Dave, a clinical psychologist, who asked him to think about what he wanted. Prior to this Mattie had always been encouraged “ [by me as much as any teacher or other professional] “to meet other people’s demands and expectations. Dave was the first person to give Mattie permission to put his desires before our expectations.”

So, if I am anything to go by, even well intentioned parents who think they respect autistic culture and have some understanding of autism can get it wrong. It is easy to beome entrenched in our thinking when taking up cudgels on behalf of our children. The danger is that we define our ideas in terms of what we are fighting against. But sometimes we need to reflect on and modify our thinking about what we are fighting for.

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11 thoughts on “Did I write that? Old thoughts, new thoughts.

  1. Hi Mike. I remember looking at some of your writing online about two years ago, when I was putting together my list of recommended pro-neurodiversity websites, and that was indeed the impression it gave me — that you were consciously trying to respect diversity, but that you hadn’t given much thought to the social consequences of assuming that most autistic children would be unable to care for themselves as adults.

    I wouldn’t describe your past views as “horrible,” though, and I don’t think you have any reason to be ashamed. Your writing was much more respectful than the barbaric prejudices that were (and still are) rampant in most discussions of autism.

  2. That’s a good point Mike. I made the mistake of listening to people who told me my son would never progress and there was nothing I could do about it. Then I found Andy Cutler and now my son has a chance.

  3. John,
    Anyone who told you your son would never progress and there was nothing to be done was either a liar, an incompetent or both.

    It ought to be self evident that any child with a developmental disorder is going to develop over time. You believe that biomedical interventions can eradicate the autism and normalize your child’s development. I believe that we can optimize a child’s development by intervening in ways that respect their autism.

    It is possible to find rational arguments for and against both our positions. But to argue that all interventions are futile is plain wrong.

  4. Mike; Agreed. So, you would agree that doctors who continue to state that there is no known cause or cure for autism are lying?

  5. So, you would agree that doctors who continue to state that there is no known cause or cure for autism are lying?

    To state the obvious here, John did not understand a word of what Mike said.

  6. John,
    we do not know the cause. You believe that you know the cause but there is no credible scientific evidence for your belief that autism equals mercury poisoning.

    Regarding a cure, you believe that autism is curable via chelation. I do not. Furthermore, I do not believe that you can cure autism any more than you can cure Downs
    Syndrome. Nor should you try.

    So, in answer to your question, no I do not believe that these doctors are lying. But focusing on a cure does not help autistic children any more than trying to cure a Downs child. Both need acceptance, understanding and interventions that meet their needs, not ours.

  7. Mike; Downs is genetic. No person on the face of the Earth will argue with that. You can not compare it to autism.
    Children HAVE been cured, whether you believe it or not.
    Nobody who is curing their child denies them understanding or acceptance. I guess you would have had to watch your own child regress and lose skills to appreciate the horror of it. All we are doing is giving our kids back what they had before mercury caused brain damage. My son’s brain damage is improving which is proof that it was not permanent as Richard Deth told us. Please don’t take offense that I opt to use the term “brain damage”. That’s how I plan to explain why his childhood was lost when I explain all of this to my son after he’s cured. When he sues Eli Lilly, he can state in court that he recovered from temporary brain damage because his father removed the mercury.
    People accuse me of wanting to file a lawsuit. I want my son to file it himself and take every penny they have for taking away his childhood which they can never replace. I hope you give your child that opportunity too.

  8. Mike,

    I second Bonnie that you have nothing to be ashamed of. In many ways, it seems to me that you were looking at the challenges of autism not as the parent of an autistic child but from the perspective of a parent. Period.

    Though we all like to think that our kids are going to grow up to be the best / brightest / most accomplished / etc, the fact is that not all kids can achieve that greatness. As parents, we strive to give our kids the advantages they need to succeed, understanding that they will be what they will be.

    It is no different with autistic children. As parents, we want them to achieve the most that they can. This means helping them in whatever way we can. We “back them all,” and only time will tell who the ‘winners’ are.

    Of course, ‘winners’ and ‘losers’ is very subjective in this context. Personally, what ‘society’ feels is a ‘win’ doesn’t often play into what I consider a ‘win,’ for me or for my children.

    ps. Thanks for your comments on my most recent post.

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