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Autism: Time for civility

AutismEarlier this month, the third annual World Autism Awareness Day was celebrated. But there is a war raging within the autism community. Parents are still pitted against each other over the vaccine issue, despite the fact that numerous well designed scientific studies have failed to show any causal link, writes Liane Carter.

Autism parents still fracture along the biomedical divide. Some parents say they have "recovered" their children from autism, using treatments that are often expensive and/or haven't been rigorously and scientifically tested, while other families - mine included - have tried many of these same therapies and seen no results, or disappointing ones at best.

And then there is the neurodiversity movement. A growing number of people with Asperger's Syndrome or higher functioning autism are calling for us to embrace autism, saying, essentially, "don't fix us, we're fine."

They believe that society ought to concentrate on accepting autistic people, not curing them. But try telling that to the parent whose child doesn't speak, or will never be able to care for himself, and you will ignite a powder keg of pent-up rage.

We saw this play out in the news earlier this month, with President Obama's recent nomination of Ari Ne'eman to the National Council on Disability.

Mr. Ne'eman, founder of a self advocacy movement for people with high functioning autism, is the public face of the neurodiversity movement, and would be the first person with a disability to serve on the Council.

Many people affected by autism hail this nomination. Other autism advocates are sharply critical. Jonathan Shestack, co-founder of the advocacy group Cure Autism Now (CAN), a group that merged with Autism Speaks three years ago, told the New York Times: "Why people have gotten upset is, he doesn't seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn't."

I happen to agree. But the fact is that appointing someone from the spectrum to the Council - even though he does not speak for all persons affected by autism - is still a promising step, so long as it focuses greater awareness on autism.

I've experienced this war in the autism community firsthand. I recently published an essay called "Cure du Jour", expressing my frustration with snake oil salesmen who prey on the desperation of parents with unfounded promises.

People who disagreed with what I wrote vilified me in the autism blogosphere, calling me a selfish, bitter and bad mother. But the next day I received a heartening email from Paul Offit, M.D., author of Autism's False Prophets: Bad Science, Risky Medicine and the Search for a Cure, who said, " A brave, clear, forthright opinion. For which, no doubt, you will be hammered by those who hold a different opinion and, instead of engaging in honest debate, make things personal and mean. Hang in there... Sometimes doing the right thing isn't the easy thing."

This is a man who knows a thing or two about "personal and mean"; since the publication of his book, he has received death threats.

Yeah. Death threats.

So where do we go from here? Where is our community's common ground?

We all know the statistic. 1 in 110 children born in the United States today is diagnosed with autism. We still don't know what causes it. The numbers keep growing, and we don't know why.

But whether you are trying to heal autism through genetic research, environmental studies, or are urging acceptance of neurodiversity, there is one thing on which everyone can surely agree: we love our children.

They deserve greater awareness, acceptance and opportunity. We desperately need more research on promising treatments, and programs to meet the housing and employment needs of a population that is rapidly aging up.

I'm pleading for more civility in our community. Open debate that is not personal, petty or mean. There's just too much at stake. How can we expect Congress to listen to us, when we are so divided among ourselves?

Our children deserve our respect. Our commitment. Our hope.

We aren't the enemies.

Autism is.

Liane Kupferberg Carter’s articles and essays have appeared in more than 30 publications, including the Huffington Post, the New York Times, Parents, Child, New Parent, McCall’s, Cosmopolitan, Glamour, Newsday, and numerous literary journals and newspapers. She is a 2009 winner of the Memoir Journal Prize for Memoir in Prose. She blogs here

 

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0 #2 Natalie Becquet 2010-04-20 03:20
Brava, Liane.

I have an 8 year old autistic daughter and well understand the pain associated with the 'failure' of many forms of treatment. I'm sorry that you've been subjected to abuse because of your views, because you're absolutely right; we're all trying our best. My daughter is communicating well now, but she couldn't speak at all until she was four, and it was a very slow process from there.

I wish you and your family all the best with your journey.
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0 #1 Tobias Holbrook 2010-04-19 05:56
No. You are the enemy, or rather, your blinkered view of the world is. Autism isn't. What you should be looking for is not a 'cure', but communication. Once you can speak to your child, then maybe you will be able to understand them. Once you can understand them and relate to them, you might find you're the one in need of a cure. Staying in a position of ignorance, however, help's no-one.

Have a look around this forum to meet actual autistic people. (www.wrongplanet.net/forums.html)

As the AA say; just Ask.
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