Category: Against Autism Speaks

I wonder which group supported this:

March 16, 2010

Dear President Obama:

We the undersigned oppose the nomination of Ari Ne’eman to the National Council on Disability. Although we salute your effort to include a person with an autism spectrum disorder on the council, the choice of Mr. Ne’eman is wrong for the autism community and wrong for our country.

1) We are a nation in the throes of an autism epidemic, with 1 in 110 afflicted and hundreds of thousands of families struggling to confront the enormous financial and emotional hardships of this disorder. It is an insult to our community and to the people of this nation who will bear the enormous costs of millions of children and adults with autism that a 22-year-old student has been nominated to this position. Mr. President, how can you praise this nominee’s “depth of experience” when he has not held a job, earned a degree or experienced life after college?

2) Mr. Ne’eman vehemently opposes curing autism, calling cure “offensive.” However, many individuals who would benefit from a cure are incapable of disagreeing with him. Mr. President, will your appointees also recommend ending the search for cures for childhood cancer and diabetes? Or just autism? Mr. Ne’eman opposes the mission of the country’s leading autism organization, Autism Speaks, which supports efforts to prevent and cure autism. He also opposes the depiction of autism as a crisis and does not address the very significant needs of the large population of individuals who are profoundly disabled by autism.

For a member of the National Council on Disability to not advocate for a cure on behalf of tens of thousands of people who suffer from disabling problems such as self injury, inability to speak, incontinence and dependence on others for their care – and who will cost society $3-5 million over a lifetime – is unconscionable. To fight against prevention and cure for such a serious disorder is inhumane and not representative of the majority in the autism community or the general population. Mr. Ne’eman’s views are extremist.

3) Finite resources will not stretch far enough to support the large number of people now diagnosed with autism. Without making the goals of prevention and cure a top priority, there will not be sufficient funding to adequately provide for the growing population of people with autism, rendering Mr. Ne’eman’s goal of providing better quality of life for those on the autism spectrum unachievable.

4) Many aspects of Mr. Ne’eman’s agenda coincide with the interests of the pharmaceutical industry, and he is publicly promoted and supported by individuals and organizations close to that industry. He harshly criticizes non-pharmaceutical treatments that have been clinically proven to benefit individuals on the autism spectrum. Research he does not support could lead to safer and more effective treatments for people on the autism spectrum.

5) Rather than unifying the autism community, Mr. Ne’eman divides it. He equates the search for a cure with outright rejection of all autistic people. Mr. Ne’eman and a small faction within the autism community may personally oppose prevention and cure as is their right, but they do not represent the majority of people on the spectrum, particularly those who are so impaired that they face a lifetime in institutional settings at taxpayers’ expense.

6) He erroneously claims the concept of recovery from autism is not scientifically supported. However, recovered individuals have been documented by medical science, and one university study puts the potential for recovery from autism at 10% (of children with autism). His denial of the possibility of recovery will impede efforts to improve the lives of people on the autism spectrum. Mr. Ne’eman, a very high-functioning individual whom Newsweek magazine described as a “master networker” and”fluent in policy-speak” does not require the interventions and treatments he disparages. He does not acknowledge the pain, isolation and life-threatening behaviors of our community’s neediest individuals, nor their need for recovery or lessening of their associated medical problems and autistic behaviors.

7) The late Dr. Bernard Rimland challenged the prevailing “refrigerator mother” theory and replaced it with the theory that autism is a biological disorder. Despite Dr. Rimland’s important role in removing the burden of guilt from parents, Mr. Ne’eman now calls on the autism community to stop admiring Dr.Rimland and find new heroes. Among his contributions, Dr. Rimland championed vitamin B-6/magnesium therapy which has been conclusively shown to confer benefits to about half of all children and adults with autism who use it. Thousands have benefitted, but Ne’eman maligns Dr. Rimland and belittles his contributions. Mr. Ne’eman’s vilification of a great hero of the autism community is further evidence of his estrangement from the people he is meant to represent.

8) Mr. Ne’eman has obscured the harsh reality of autism with rhetoric. His littany of words – “paradigms, infrastructures, neurodiversity” – does not address the real life problems of people with autism, particularly those most profoundly impaired. Rhetoric and denial will not end the suffering. It will not provide futures for people with autism. And it will not prevent the next generation from being afflicted

posted by skyblue1

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

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

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

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), 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.”

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:

OK that is a Yes.

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

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

I found this news article which spells it out very well. Namely the issue is that a previously solely aspie run forum has ‘sold out’ and taken thousands of dollars from Autism Speaks in return for running videos that advertise and promote the dodgy curebie org.…er/1201792

Extract –

I have just discovered a somewhat dated thread on the web page which has the slogan “autism=good” in the title bar of the browser when one logs onto this stellar website.

It goes on with the members of wrongplanet questioning why Alex Plank would go hat in hand to autism speaks, an organization who has described autism as a global health crisis and clearly does not share the “autism is good” philosophy of WP, why Alex Plank and his friend Jack “Cubby” Robison would solicit (and be given) funding by AS for their autism talk TV show.

from Amy

Much to my horror it is now evident that Autism Speaks has teamed up with Wrongplanet website in order to influence and spread their sickening cure ideals.
How Wrongplanet – Alex Plank, could allow this is utterly beyond me as he has claimed to be against cure in the past. I can only assume that he is being monetarily compensated in some form.

From Amy

So many autistics suffered for years at the hands of mercury fanatics, those obsessed with the notion that mercury was the cause of autism. Suffering chelation, extreme diets, multiple daily injections and various other torturous attempts at curing mercury poisoning which simply did not exist.

Many other autistics suffered insults, ridicule, personal attacks and scorn for simple saying “I am not poisoned by mercury” and explaining the reality.

How many of us were attacked on blogs, banned from autism parent forums, and condemned when simply expressing an opinion online because we stuck to our beliefs that we were not poisoned.

I know autistics who had tissue samples taken against their will during their parents hopeless attempts to prove mercury was the cause of autism.

I shudder to think of the years of hell for the youngest, most vulnerable autistic children who had large amounts of blood taken for tests to prove needless mercury theories. At least one of these children died directly from the huge amounts of blood taken.

When Dr. Andrew Wakefield was finally discredited it still took time for the major pro-mercury theory organisations to really accept it.

For the real victims of the whole scam, the apology has never happened.

There has been no apology from the many organisations that badgered and ridiculed pro-autism orgs, no apology from the many doctors that profited hugely from desperate and ignorant curebie parents that dreamed of a ‘normal’ child hidden inside their ‘poisoned’ child.

No apology to the medically abused children, no apology at all.

This is an open invitation to the thousands upon thousands of people that believed in mercury poisoning so much that they harmed child and adult autistics either in words or actions in order to pursue their theories.

You may post here and offer an apology, autistics are still waiting.