Tag Archive: AutismSpeaks.org


Autism Speaks by its name and by its clearly evident success has positioned itself as the most powerful non-profit organisation in Autistic affairs.

On the face of it this could be seen as commendable (and indeed it is a strength they use very well). They are happy styling themselves as spokespeople in Autistic affairs and management. They are in effect holding themselves out to the world as the mouth-piece of all people on the spectrum.

As their star rises spectacularly and they encroach evermore into new grounds of Autistic Affairs, unchecked and unquestioned, with all the righteousness, fanaticism and zealousness of the Knight Crusaders into the Holy Lands (or at least that is the images it brings glaringly to my mind), a sombre thought crosses my mind.

Whilst I may look for words to express my sense of wrong, of inappropriateness and impropriatiety, I found in a friend, words to express it far better than I. This is what she recently wrote to me in discusing this very topic.

“A very simple notion came to me today. We didn’t ask any of these organisations to handle our affairs, they have not sought a mandate to handle our affairs, and, as adults, we do not seem to derive any discernable benefit from them handling our affairs.

(It is possible Autism Speaks cannot produce one single Autistic who has asked them to speak for him/her)

We do not owe them any gratitude or respect…the boot is on the other foot…they need to seek our permission to speak in our name, and owe us apologies for every time they have obstructed our lives by getting it wrong.

Autism belongs to we the autistic, whether we like it or not…without a clear voluntary mandate from us, anyone else is just an uninvited tourist.

…and $60 million US is an unseemly amount of money to be mysteriously garnered and deployed in our name (without showing account of source or destination) by an uninvited tourist…”

It is true.

There is not the respect nor the sense of even pretense to wanting to work with the people on the spectrum who may have a voice. It is arrogant to my thinking.

I see no respect in this:

Nor this

I do see demonising a condition. I do see a want to condemn and malign the individual for what they are inherently. They have Autism. They are Autistic. When they demonise Autism they slap the face of everyone on the spectrum. They do it whilst staging clever videos and spreading fear into the hearts of parents of children with Autism and using clever PR, Media and political machinations.

In all of this they are successful. They dominate where they encroach. Slowly but surely they become not a voice, not a strong voice but the dominant voice which controls dialogue and ultimately censors and controls all those not holding THEIR view of what Autism is.

So one day they may ultimately be the voice of Autism by which all dialogue is filtered through or dismissed for worthwhile discussion. Whilst it may be a sad day when it happens, why should it matter? I am certainly too old and too far removed from them to personally be affected by whatever changes they make. My son? Maybe he too.

But their effect on the Autistic community in general in the present and the future more than scares me and i feel a driving need to do or say something. Why?

Well with that I remember another passage written by someone else. It is a chilling little piece of prose, from a German Pastor,Pastor Martin Niemöller

They came first for the Communists,
and I didn’t speak up because I wasn’t a Communist.

Then they came for the trade unionists,
and I didn’t speak up because I wasn’t a trade unionist.

Then they came for the Jews,
and I didn’t speak up because I wasn’t a Jew.

Then they came for me
and by that time no one was left to speak up.

This echoes in my mind with their every video and every announcement and every action. It is more than a little disconcerting.

From Bloke

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OK we expect that an organisation purporting to act in the best interests of Autistic people, has an idea about Autism, and what their focus is on to improve the lives of Autistic people. We further presume that it would be a united front.

Here is the problem though when it comes to Autism Speaks. From the days of their inception, their focus was mainly on biomedical research, and specifically, vaccines purported effect on Autism.
This has been used as a fear-mongering tactic to parents with Autism to get them support, according to Dr London who left Autism Speaks controversially http://autism.about.com/b/2009/07/01/second-resignation-from-autism-speaks-reflects-concerns-over-vaccine-related-research.htm

Dr London states “.the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations. The arguments which Dr. Dawson and others assert– that the parents need even further assurances and there might be rare cases of “biologically plausible” vaccine involvement –are misleading and disingenuous. Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents’ doubts. By preferentially investing and advocating for the use of limited financial resources on the “biological plausibility” argument, the organization is adversely impacting the advancement of autism research.”

This was not the first resignation on similar grounds. Alison Singer left the board for similar reasons as cited here
http://www.newsweek.com/2009/01/15/this-question-has-been-asked-and-answered.html

So the court ruling in which science had once and for all put the subject to bed, at least according to Andy Shih (Vice President of Scientific Affairs at Autism Speaks),  http://edition.cnn.com/2008/HEALTH/09/03/measles.autism/index.html is the new position on vaccines as causal or contributing factors?

They surely are in one agreement on this very basic fact, right?

Yes! (Andy Shih): “We don’t know exactly what causes autism, but the prevailing theory is that there’s a genetic predisposition — and we know from twin studies that this genetic component is significant — and there are likely to be environmental factors. Unfortunately, we’re just not sure what the environmental factors are.” http://www.revolutionhealth.com/conditions/mental-behavioral-health/autism/just-diagnosed/tips-shih

No! Mark Rothimayr Autism Speaks President says “We know there’s a genetic predisposition, we know there are environmental triggers. The history of autism science is like where cancer science was 40 years ago — it needs to catch up. We need better diagnosis, we need better treatment.”

OK so that was a Yes or a No or that we are not so sure? I know! Ask the Chief Science Officer at Autism Speaks – Geraldine Dawson!

“In a prepared interview posted on the Autism Speaks Web site, the group’s chief science officer, Dr. Geri Dawson, says that scientific studies have found no link between thimerosal, a mercury preservative used in certain vaccines, and autism. Nor have they found a connection between the measles-mumps-rubella vaccine and autism.

“So … given what the scientific literature tells us today,” she says, “there is no evidence that thimerosal or the MMR vaccine cause autism” and “evidence does not support the theory that vaccines are causing an autism epidemic.”

Read more: http://www.post-gazette.com/pg/09228/991232-114.stm#ixzz11K1KiKJQ

OK that is a Yes.

What about this business with the Executive Vice president of Autism Speaks – Peter Bell?

http://scienceblogs.com/insolence/2009/02/david_kirby_and_autism_speaks_sittin_in.php

That is a definite no and looks a little underhanded by any reading.

So considering the fact that the organisation is having huge investment of money and has taken the mantle of the most powerful Autism charity in the world…why is there the division of opinion on such a basic issue at such a high level? It looks very much like opinions differ from person to person and that they simply do not agree and are not working together. If they are not working together as a unified group than honestly how can anyone believe or suggest that they are able to work collectively for Autistic people or those that care for Autistic people?

My contention by how I view this, is they simply can’t. By direct extension, they aren’t now.

From Bloke