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Don’t mourn for them

September 3, 10 //
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The HBO film Temple Grandin, which I wrote about back when it first aired, recently won 7 Emmy awards, including Outstanding Made for TV Movie. Here’s what I had to say about the movie back then:

I encourage you to watch this film with an open mind. It may just help you understand the sentiment that those with autism are different, but not less, and are most definitely not broken.

This sentiment was flowing in full force at the televised ceremony last Sunday. It is one small step, but what a powerful example Grandin’s life is of what is possible. Even if you can’t imagine it ever being possible.

From her website:

Dr. Grandin didn’t talk until she was three and a half years old, communicating her frustration instead by screaming, peeping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized. She tells her story of “groping her way from the far side of darkness” in her bookEmergence: Labeled Autistic, a book which stunned the world because, until its publication, most professionals and parents assumed that an autism diagnosis was virtually a death sentence to achievement or productivity in life.

Dr. Grandin has become a prominent author and speaker on the subject of autism because “I have read enough to know that there are still many parents, and yes, professionals too, who believe that ‘once autistic, always autistic.’ This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic. To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can” (from Emergence: Labeled Autistic).

All of this has brought back to mind what I – and many – consider one of the most important essays about autism by an autistic person, Jim Sinclair’s Don’t Mourn for Us:

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize. But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity.

Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

Please take a few moments and read the entire essay. You’ll be glad you did.

Make up your own mind about autism

June 4, 10 //
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A while back I had lunch with an old friend, and the topic of conversation wound its way to autism. I, of course, am the parent of an autistic son. As it turns out, his nephew is also autistic. He wanted to understand autism, and I wanted to help him understand. But I didn’t know where to start.

There are many possible ways to approach the question. I could start with: Vaccines cause autism, once they have it, it’s a long struggle to recover them. Or how about: Nothing “causes” autism, it is just another aspect of this neurodiverse world we live in.

As far as treatment: Chelation, to get rid of the mercury and other metals. Or: A special diet that is almost impossible, and incredibly expensive, to adhere to. Or: ABA. Or: (add your favorite treatment here). How about, there is no need to “treat” the autism, you just need to treat your child as a child; different, but still just a child.

For someone to say that all autism is nothing more than mercury poisoning is irresponsible, though I don’t doubt that at least one case of autism could be traced directly to mercury. To say that all autistics live miserable lives and will never be happy or able to live and function on their own is simply untrue, though it goes without saying that there are some autistics whose life will be exactly like that.

On the other hand, to say that all autism is solely the result of genetic factors – with no influence from environmental triggers – is irresponsible, though I sincerely believe that some cases of what we call autism are indeed purely genetic manifestations. To say that all autistics have the potential to live happy lives and live and function on their own is as untrue as the opposite example above, though obviously some autistics will find happiness and success on their own.

If you are new to autism, because you have a newly diagnosed child or you are just curious, listen to what the extremists and fundamentalists have to say. Read the blogs and books of parents of children with autism and the books and blogs of autistic adults.

And then pay attention to your own instincts and make up your own mind.

Get to know your child – as he or she is, not how you wish they were – and figure out what YOU think is best.

Not just for your autistic child, but for you. For your spouse. For your other children. There is no simple answer, no matter what you hear, and there is no simple path to follow as you make your way through the world of autism.

Sounds a lot like parenting, doesn’t it?

A world without autism

April 25, 10 //
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If autism could be cured, and if we, as a society, chose to cure it, what would that mean for our future?

How would it impact our lives, and the lives of our children (and descendants many generations down the line)?

What would society look like 50 years from now? 100 years from now, when autism (or autism-like traits) were no longer a part of our world?

What if they had been diagnosed autistic?

April 25, 10 //
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In his book Unstrange Minds: Remapping the World of Autism, author Roy Richard Grinker mentions chess legend Bobby Fischer (p. 63) as someone who may have been an undiagnosed autistic. When I read David Edmonds’ book Bobby Fischer Goes to War: How A Lone American Star Defeated the Soviet Chess Machine, I thought the same thing. (For more discussion on the subject check out the Bobby Fischer talk page on Wikipedia.)

I can’t help wondering, if Fischer were indeed autistic, how would his life – and the history of chess, among other things – have been different if he had been diagnosed when he was young? If he had been provided the treatment and services that are typically demanded today for Asperger’s diagnoses, would he have had the impact he did? Would he have been able to have that impact, or would that ability have been “treated” out of him?

You can extend this to any of the great minds that people sometimes say were probably autistic, like Newton, Einstein, Van Gogh. You could also look at those who have been diagnosed with Asperger’s as an adult and think back on how things may have been different, for them and their contributions, if they had been diagnosed younger.

There is no doubt (in my mind, anyway) that the increase in diagnoses of autism, especially Asperger’s, is due in large part to a better understanding of what Asperger’s is and an increased desire of parents to understand why their kids are “different”. Many are being diagnosed now that might not have been diagnosed before, and demanding (and receiving) treatment they may not have received before.

Today, most people – parents, really – who seek an autism diagnosis do so because they want to know what’s wrong and how to “fix” it.  I can’t help wondering what these individuals – and the world – may be missing out on because we want to catch and “fix” their differences early in life.

Of course, a diagnosis doesn’t have to lead to a “fix”. What if a diagnosis were used to let parents and autistics better understand why they are the way they are? That is something they could use to help themselves as they shape their own future.

Just imagine what that world might look like.

(note: this is an edited version of my April 2008 article What if they had been diagnosed autistic? I was inspired to rewrite and repost it based on yesterday’s blog post at about.com:Autism)

His decision, not mine (thoughts on an autism cure)

April 13, 10 //
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A few years ago, a friend asked me the question: “If someone told you there was a pill you could give your son that would cure his autism overnight, would you give it to him?” Sounds like an easy question, right?

I hadn’t really thought much about it for some time, as it had been nearly ten years since his autism diagnosis, so I answered with a very non-committal, “I don’t know, I guess so.” That evening I gave the question some more serious thought, and was surprised by I learned.

If the child study team that gave us the diagnosis had asked that question right after giving us the diagnosis, when our son was just barely three years old, I would not have hesitated. I would have given him the pill right then and there, no questions asked. (Well, maybe “do you take credit cards?”)

But if you had asked me five or six years later, as my son approached 10, my answer would not have been so quick in coming, or quite so easy to make. At almost 10, he was still autistic, but he was so much more. The more I thought about it, the more I realized that it would be impossible to separate his autism from the rest of him. If we cured the autism, what would be left? Or, I should say, who would be left? Would it be the son I knew and loved, or would it be a “new” child that I would need to get to know all over again? Would I like this new child, this new addition to the family? Would he like who he had become?

Ask me now, when my son is nearly 19 and preparing to graduate high school, and it would be even harder for me to answer. Although in some ways it would be much easier, because what I’ve realized is that at this point in his life it is not my place to make that decision for him. If someone came to me today and asked that question I would very quickly respond, “Don’t ask me, ask him; it’s his decision to make, not mine.”

This may be a surprising answer to those of you that don’t have experience with autism. But if you are a parent, you know exactly what I’m talking about. When our kids are young, it is up to us to guide them, direct them, and protect them. As they get older, we help them discover who they are and what they want to be. And then we “let go,” we let them leave the nest.

It is the same for our autistic kids, even if the path is a bit longer or rockier.

Note: Author John Elder Robison also wrote about cure today, from the perspective of an autistic person.

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Brett's Waste Blog by G. Brett Miller is licensed under a Creative Commons Attribution-Share Alike 3.0 United States License. Based on a work at blog.gbrettmiller.com.

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