Showing posts with label Autism Vox. Show all posts
Showing posts with label Autism Vox. Show all posts

Thursday, December 11, 2008

What Does "Positive" Autism Awareness Mean?

What exactly does "positive" autism awareness mean? Is that concept consistent with "realistic" autism awareness?

I have already expressed my concern that the realities and challenges faced by the severely autistic may not be reflected on Autism twitter Day next Tuesday, December 16. Bonnie/AutismFamily, the force behind Autism Twitter Day, responded to those concerns by reference to her own child.

Still I can't help but wonder when I see the adjective "positive" used to describe autism awareness whether it is an attempt to censor the discussion, to promote an unrealistic, feel good picture of autism like that promoted on Autism Vox, LeftBrain/Right Brain and other "Autism" Hub, neurodiversity sites.





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Friday, December 14, 2007

Autism Vox Tells The NYT PART Of the Autism Story

In reaction to a provocative public service advertising campaign which highlighted some of the negative realities of autism and other mental disorders, Kristina Chew of Autism Vox did what she does day in and day out, she told part of the story of autism. In Campaign on Childhood Mental Illness Succeeds at Being Provocative Ms Chew gave the New York Times the "let's all feel good, say nice things, and sing Koombaya" part of the story of autism and she expressed indignation and outrage on behalf of parents of special-needs children, autistic adults, teachers, disability rights advocates and mental health professionals about the negative picture of autism presented by the campaign.

At Autism Vox Ms Chew rarely mentions any of the negative realities that actually result in autism diagnoses or that impair the lives of so many autistic children and adults and the family members and caregivers who love and care for them. Any expression of those negative realities whether it be the Autism Every Day video or the campaigns by people such as Jenny McCarthy to cure autism are met with hostility, scorn and ridicule at Autism Vox.

The campaign that Ms Chew attacks with her efforts is a campaign to help children with psychiatric disorders. In the Autism Vox Universe it is people trying to help children by telling the truth who are the enemy. In fact it is the truth that is the enemy at Autism Vox. And WHO are the real people behind the campaign? It is not NYU. It is those people who speak the truth about their children's conditions - honest, caring parents. It is they who inspired the campaign attacked by Ms Chew:

"According to Dr. Koplewicz, the campaign was inspired by filmed conversations of parents and children talking about life with a psychiatric disorder. “These families felt their children were trapped by their disorders,” he said.

John Osborn, the president and chief executive of BBDO New York, said the effort was intended to increase the sense of urgency about the diseases and encourage conversation. “It’s tricky because there are a lot of messages in the air, particularly at holiday time. That makes it a challenge to cut through the clutter.”

BBDO’s earlier ads for the Child Study Center — which included images of a child running happily through a sprinkler and a drawing of a child caught in a maze — “were wonderful, but they didn’t get this kind of attention from anyone,” Dr. Koplewicz said. “They were too pleasant and innocuous. That’s the reason we decided to go along with BBDO.”

He was further emboldened, he said, by the reaction of focus groups of women whose children have the disorders mentioned in the ads. “Everyone who participated felt the ads were informative,” he said. “While we knew the campaign was edgy and we knew it would be harsh and upsetting, the facts of mental illness are even more upsetting.

Thankfully the New York Times told both sides of the story. My son has Autism Disorder. He is severely autistic. I have a duty to speak the truth about his disorder, a sense of duty not on display at Autism Vox where parents speaking the truth are treated with contempt and outrage. It was encouraging to see the NYT present an explanation for the campaign.

Some day it might dawn on Ms Chew that parents speaking the truth about their children's autism disorders actually love their children every bit as much as she does, that we find joy in our children every single day of our time together with them. But unlike Ms Autism Vox we also understand that time IS in fact the enemy for most of our autistic children, that many WILL live their lives dependent on the cares of others, especially after we are gone. We live with the realities of self aggression and aggression to others. We live with the realities of ever present danger to our children presented by every day life. And we try to do something about it, for our children and for other autistic children and adults. And we do something rarely done at Autism Vox we speak the whole truth about autism

Ms Chew bragged to the New York Times about the 3,000 to 4,000 daily visitors to Autism Vox. What she failed to mention were the hundreds of thousands of parents across the United States and Canada fighting to treat and cure their autistic children, parents who, on behalf of the children they love, speak the truth, the whole truth, about autism. And like the campaign organizers at NYU we know that the facts of autism are more upsetting than the provocative imagery used in the awareness raising ransom notes campaign - for most of us anyway.

Monday, October 22, 2007

Neurodiversity Bloggers Still Buzzing Over Jenny

In Jenny McCarthy Knocks Over Neurodiversity Hornet's Nest I commented on the intense reaction by Neurodiversity bloggers to Jenny McCarthy's autism advocacy, advocacy prompted by her own child's autism and her efforts to treat or cure her child of that autism. Although I do not share her views about autism treatments I am amazed at the ferocious reaction her comments have generated amongst Neurodiversity bloggers. Autism Vox and Orac are two Neurodiversity bloggers who just can't seem to get her out of their minds with each posting yet again about this well known autism mother who has dared to speak publicly about autism without reading from the NeuroDiversity Manual.

Saturday, September 15, 2007

1 in 94 Autism Rate In New Jersey AND The USA?


One of the interesting discrepancies, amongst many, in the autism world is the difference between the 1 in 150 rate cited by the CDC in the US and the 1 in 100 rate cited by Simon Baron-Cohen and other experts as the autism rate in the UK. What is also interesting is the 1 in 94 rate cited by the CDC for New Jersey which is obviously much closer to the UK figure. Is the 1 in 94 NJ rate more representative of actual rates across the US ?

If the rates of autism are affected, in whole or in part, by environmental considerations then it would be difficult, if not impossible, to reach any conclusions about USA rates based on the NJ figures. But if there are no environmental factors influencing the development of autism, if autism is, as some argue, simply a naturally occurring genetic variation, then it may well be that the NJ rate is representative of the USA as a whole with the higher NJ rate, which brings it much closer to the UK, being attributable to better awareness, diagnosis and other services compared to other parts of the US.

Kristina Chew is the host and author of Autism Vox, a very well written "autism" blog which presents a neurodiversity ideological perspective on autism, a perspective which does not embrace environmental considerations as possible causes of autism or rising autism rates. She is also a New Jersey resident and has commented on New Jersey's 1 in 94 rate suggesting some factors which, if true, would seem to suggest that the NJ autism rate of 1 in 94 might be a more accurate number for the US as a whole then the 1 in 150 cited by the CDC. As she comments in A Whole Lot of Autism To Account For in New Jersey:

Rather than trying to get to some “bottom,” some specific thing that we can point to and say “this is the cause of autism,” I would suggest that numerous other force are working in concert. These forces range from “better understanding of autism and diagnosis” to the expanded definition of autism to embrace the notion of an autism spectrum.

Ms Chew's list of "numerous other forces" working in concert does not include possible environmental causes. The autism spectrum factor is a constant in the US. That leaves better understanding of autism and diagnosis as explaining New Jersey's higher rate. Presumably, if Ms Chew's list is a good explanation for NJ's higher rate, than rates in other regions would climb if those regions also benefited from better understanding and diagnosis. In that case their autism rates should resemble New Jersey's 1 in 94 rate ... or perhaps at least the UK's 1 in 100.

Of course that assessment could change considerably if environmental factors are shown to play a causal role, to one extent or another, in some cases of autism.