The Autism Solution

“Someone snuck into my home and stole my one-and-a-half year old’s mind, leaving his bewildered body behind.” This is how it feels to have your son diagnosed with autism, according to Jon Shestack, vice president of Cure Autism Now. “If 1 in 250 children were actually being abducted rather than diagnosed with autism it would be a national emergency.” This sobering observation sets the tone of the January 7, 2004 Journal of the American Medical Association report on the National Autism Summit. It’s staggering how little we understand about autism spectrum disorders. An act of Congress in 2000 created the Interagency Autism Coordinating Committee, which developed a 10-year agenda for understanding what causes autism, preventing at least 25 percent of cases, and enabling speech in at least 90 percent of those who are diagnosed. This ambitious plan, nicknamed, “the matrix” was unveiled at the first Summit. One piece of the matrix already underway is the Childhood Autism Risks from Genetics and the Environment (CHARGE) study, where tissue and blood from 1000 children with autism will undergo unprecedented intensive analysis. I’m thrilled that this agenda is moving forward, and hope that the momentum and speed will build – even faster than new diagnoses of autism are skyrocketing.

In the meantime, even though we are operating in the dark, we do know that substantial early intervention and treatment offers the best results for kids diagnosed today with autism. It may seem unduly expensive, but not only does this effort improve life for the child, early intensive neurobehavioral treatment has been calculated to slash lifetime disability bills for each child by about $1 million.

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Comments

Anonymous's picture

Talking about autism with way too much drama

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I have autism. I had a difficult time as a child, and had to learn a lot of things that most people pick up naturally; but I've had a good life so far. I'm twenty-seven and already living independently; I'll be able to support myself soon. Many autistic people are on their own at eighteen. (When I was a child, we didn't know as much about educating autistic children as we do now.) It worries me that there are a lot of parents whose children are newly diagnosed who are reading this kind of thing--about stolen children and huge health care bills, about worthless lives; talking about disability as though it were a thing of horror rather than a neutral fact about someone's life. I mean, yes, I'm disabled; and yes, I need more help than most people do; but I live my life like anybody does, and I have goals and dreams and things I like and don't like. I haven't been stolen; I'm still here and I always have been. My mom was often tired and frustrated, but she raised me just fine and she hasn't gone nuts. Parenting isn't supposed to be easy, is it? I really think there isn't actually an "autism epidemic". I've checked things out somewhat over the past few years, learning more about autism, and it looks like there are just as many autistic adults as autistic children--only we used to think they were only mentally retarded or only eccentric or neurotic or obsessive-compulsive, and treated them for other things instead of autism. We didn't know very much about autism when my parents were growing up. Even when I was growing up, autism wasn't diagnosed all that often. I know a fifty-two-year-old lady who was diagnosed last year; she was thought to be schizophrenic for the longest time; she had never had any hallucinations or delusions but they didn't know what else to call her. Most of us learn to talk. Most of the ones who don't learn some other kind of communication. Most of us are able to work; I will be, soon, and many of my peers already are working. Most of us will live on our own; most of the ones who won't will still take care of themselves. Disabled people are getting better and better at finding places for themselves; and the world is learning more and more that we are just as good at working as anybody else. We grow and we learn as long as we're alive; maybe slower than most people, but we do learn, especially if we have good teachers. A good speech therapist is a life-saver, and so are occupational therapists who will be patient while you figure out your own ways of taking care of yourself and navigating the world, because when you are disabled you often have to do things differently. Autism isn't the overdramatic thing you see in the "awareness ads". It's just a different kind of life, one that's just as good as life without autism. It's important to figure it out early, so that we can have better education; but I think it is just horrible of people to talk about it like it is the end of the world or the end of your life, and scare all the moms whose kids have been diagnosed. It's not like that at all. It's difficult, but it's just a different life. That's all. Different is okay.

Reply

A Balanced Approach

Thank you for your thoughtful, balanced comment. I admire your healthy approach to your situation -- an approach that would be healthy for most of us. Whatever our circumstance, "...it's just a different life. That's all. Different is okay." As you know, autism isn't a single condition, but a wide spectrum. For many people on the spectrum, autism is no worse than you've described. For some, it is even easier. And for some, it has been far more difficult. I don't want to discount the experience of the father in the news report above, but as you powerfully point out, his is far from the most common experience. The full spectrum of autism deserves our attention. I wish understanding autism were a higher priority for our country, both from a scientific and from a human perspective. I hope many people read your comment or listen to what you have to say. Yours is an important voice.