Liane Carter

Liane Carter
Location
New York,
Birthday
December 31
Bio
Liane Kupferberg Carter’s articles and essays have appeared in more than 40 publications, including the New York Times, Chicago Tribune, Huffington Post, Babble, Parents, and numerous literary journals, newspapers, and blogs. She is a columnist for Autism After 16: http://ning.it/NFCZiG Follow her on Twitter @LianeCarter and on Facebook at http://tiny.cc/k7loe

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APRIL 1, 2010 11:36AM

Autism: Time for Civility

Rate: 11 Flag

WAAD 

On April 2, we will celebrate the third annual World Autism Awareness Day. 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.

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 are seeing this play out in the news this week, 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 on the eve of World Autism Awareness Day, 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.

On the eve of World Autism Awareness Day, 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.

Because we aren't each other's enemy.

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Well I'm on a different fence frankly. I'm autistic, with Asperger's Syndrome....but um...I'd rather not have it any day because frankly I'm sick of always worrying about losing friends or saying the wrong thing or doing horribly at school when it comes to multiple choice (whether this is because of my autism or not, I don't know)....So personally for those who are like me and have Asperger's Syndrome, wanting to be accepted is all nice and well for you, but I'd rather not have this disability any day.
This is an extremely important post. I am very glad it received cover.

I am the mother of a "high functioning autistic", whatever that means. I never got involved in the alternative therapies. I would never tell someone not to do so. My child does go to a regular school and is able keep up with the workload.
At the same time my heart goes out to those who have "overwhelming symptoms" to call it something. It's not fair, why should my son do better and not them, too?

I didn't realize the number had fallen to 1 in every 110. If that's not enough incentive to race for a cure/working treatment I don't know what is.
Sean, the Autism Awareness Day is to increase awareness of people to those who are like you, not to say that it is okay to be autistic or have Asperger's Syndrome. Hopefully, with more awareness come more research and understanding. When people generally don't know much about something, they are afraid or ignore it.
Rated.
I'm the father of a 3 year-old diagnosed as being on the autism spectrum relatively recently and are at the beginning of our journey. We've chosen a therapy (RDI) that seems right for us, because it will help my wife and I help our son develop the social milestones he's missed.

Acceptance of who you are is important, that is true. To my mind, though, that does not mean doing what you can to reach your full potential. Helping someone with ASD/Asperger's compensate for their very real deficits is about helping them reach their potential and lead a happy, fulfilling life--whatever that might mean for them as individuals. It's not about "changing" or "curing" them.
You said:
"Our children deserve our respect. Our commitment. Our hope.
We aren't the enemies.
Autism is."

Beautifully written ideas. Except, that when banding together to find a solution, Autism isn't the enemy. We are.

(With thanks to Pogo.)

---GG
Not having a child affected by this, I'm sure there will be those who will think I shouldn't comment, but here goes....

I'm worried about the whole 'spectrum disorder' thing -- the redefinition of what falls under the definition of Autism. There are those who will argue that it lets more people have access to treatment, but it can also lead to stigmatization and inappropriate lumping together of people who have very different needs (and therefore lead to inappropriate treatments that aren't matched to those needs).

That, and it renders all your historical trend data pretty much worthless (if I understand it correctly, 'Autism Spectrum' does not map exactly to the sum of Autism + Aspergers, as previously defined). So, who knows if there's a spike in prevalence, or just a more agressive diagnosis of what falls into that spectrum. And it can take years for the whole population of doctors to use the new diagnostic guidelines correctly (rendering current data kind of unstable and questionable).

So, while I usually tend to lump things together analytically, I think that in this case, we're losing some precision that would help us better understand the disorder (or disorder_s_) that fall under this new, broad definition.
"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."

The call to civilty will not prevent me from pointing out the fallacy in your argument. There is no one thing called "autism." Indeed, many people with Asperger's have more in common with neurotypicals than they do so-called "core" autists. For this reason, the appointment of a man with HFA ,who lacks sympathy for those truly disabled, can hardly be seen as a "promising step" for the latter community. In claiming to speak for autistics, while doing so only in the interests of the high functioning, he willl do more damage than a neurotypical could in the same position. Without advocating for the autistic-disabled, he will by his status give the appearance of doing so. From the perspctive of those in need of treatment and not just respect, he is a trojan horse, and the position you advance, that he represents a positive development nevertheless, is simply the misguided effect of a superficial analysis. If that seems incivil, I am sorry. But incivility is a damn sight better than allowing support for the worst sort of tokenism--non-representative tokenism--to pass unreproached.
My son is twenty and has AS but when he was two he was diagnosed with autism. I think its great that Prez BHO appointed someone to this council who is on the autism spectrum. While no one would probably chose to be autistic, let's get support for those who have it, and help them integrate into the rest of society with its foibles. Thanks for writing. r
I think people are fighting over semantics. No one is saying that we don't love our children. I cherish my autistic son just as much as I cherish my older son. The disease is evil, the child is not evil. The child is the victim.

Ask yourself the question--would you wish someone to have an autistic child? I hope not, just as you would never wish anyone to get cancer or diabetes. You have to differentiate the disorder (or the disease) from the person just as you differentiate cancer from the person.

In terms of those with very high functioning Aspergers, no one is denying your self worth or contributions to society but there are a lot (a real lot) of autistic kids out their that will never cope, let alone thrive in the mainstream environment and this deviousness is not helping them.
Thank you for provoking a very spirited and interesting discussion about a subject that really needs a lot more open voices from all parts of the community. I have no personal interest, but I do have want to know as much about the issue as I can and hearing from parents and people who are affected first hand is helpful to that end. Our humanity requires our understanding of each other, hopefully with less contention and a lot of sympathy.