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My response to Mrs. Wright of Autism Speaks

20 Dec

As I recently wrote, Autism Speaks has once again shown it’s lack of respect for autistics and their parents with an opinion piece by Mrs. Suzanne Wright, co-founder of Autism Speaks.

I left the message below in response to Mrs. Wright’s piece.

I can not resign any position with Autism Speaks, as John Robison has done. I have been a member of one autism organization–a group which later became the local chapter for Autism Speaks. I resigned that group when they showed that they would waste their efforts lobbying against legislation that had nothing to do with autism. I’m glad I quit then.

One thing autism has taught me is that so many things we take for granted are gifts. It is a gift to have average or above intelligence. We don’t earn intelligence. It is our responsibility to use our gifts well.

Mrs. Wright, you aren’t using your gifts. After years with the autism community, you continue to speak for us as without understanding us. You aren’t using your gifts. My kid will never have the ability to understand the world like you can. Your gifts are squandered and that is a terrible shame.

I am doing more than “existing”. I am living. Is it harder with a disabled kid? Sure. It’s harder for him.

Use your gifts. Much more–use the gifts of those working for you. Learn how to frame the situation as being difficult, for that is what it is. But not as a life without hope. A life of despair.

I live. I love. I have joy. My son lives. Loves. Has joy. I have not lost touch with him. He has not lost touch with me.

It will be harder for him to enjoy life if the world sees him as less than a full person. It will be harder for him if we don’t put his needs first rather than mine. Please learn to put first the needs of the people we represent and advocate for.

If we in the autism community can’t put forth this message, how can we expect the rest of the world to do so?

Before we can craft a national plan we in the autism community must have a plan of our own. It must start with respect. Respect for autistics. Respect for families. And you are not showing that.

I saw the response Autism Speaks put forth in your home town newspaper in Florida. Please stop dodging this important question by framing it as “high functioning” adults vs. parents of “low functioning” children. Many of us who are parents of children with great challenges disagree with your stances. We’ve been telling you this for years. It’s time to listen.


By Matt Carey

Autism Speaks: it’s time to listen

18 Dec

I’ve always found the Autism Speaks motto ironic: “Autism Speaks. It’s time to listen.” Change he period to a colon and you get “Autism Speaks: it’s time to listen”. And, please, could you start listening, Autism Speaks?

Autism Speaks got off to a rocky start. Although they claimed an ” overwhelming positive response from the autism community”, the rollout of the organization was met with much criticism. Autism Speaks co-founder Suzanne Wright adhered to the “missing child” model of autism with phrases like: “It is as if he’d been kidnapped, or somehow had his mind and spirit locked in a dark hole deep within him”. She also had the parent-centric model of the autism community with phrases like “Such an effort must be driven by those with most at stake: the parents of autistic children.”

Shortly after their launch, Autism Speaks released a short film, Autism Every Day. While Autism Speaks told themselves and the world that the response was positive, in reality there was a great deal of negative reaction. (e.g. here, here, here, here, and more.)

It took years, but eventually Autism Speaks listened. The video disappeared from their website and YouTube channel.

Another video debacle came in the form of “I am autism” which depicted autism as a sinister monster stealing babies and ruining parent’s lives. Here’s the transcript in case you think I’m exaggerating. The video is now also removed.

Every now an then, I feel hope for Autism Speaks. There are some really excellent people at AS. AS took on the phrase “different, not less“. Sometimes a blog post comes by that I particularly like. And a lot of their research portfolio is quite good.

Then you get announcements like this one: Autism Speaks to Washington – A Call for Action. And we see that we are back to 2006. We are back to “I am autism” but this time it’s phrased “This is Autism”.

As a result of that opinion piece, John Elder Robison quit. He was one of the few (if not the only) autistics working in a high profile position with Autism Speaks. Here’s a section from his article, I resign my roles at Autism Speaks:

For the past four years I have worked very hard to defend Autism Speak after a series of public relations missteps; beginning with the I Am Autism video. The most recent “Autism Speaks Point of View” http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization.

I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.

We do have problems, and we need help. Some of us need counseling or training, while others have significant medical challenges. We also need acceptance, and support. There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised.

A newspaper in Palm Beach, Florida (where the Wrights have a home) published the article: Autism Speaks post rattles some readers One board member resigns, saying he can’t stand by co-founder Suzanne Wright’s views. While they couldn’t get a comment from Mrs. Wright, they did get some statements from Autism Speaks itself.

Autism Speaks took the old cop out. Whenever there’s a discussion of whether a depiction of autism is demeaning, one can count on hearing the argument that the discussion is between parents of “severely” autistic kids and “high functioning” adults.

Michael Rosen, executive vice president of strategic communications at Autism Speaks, said Robison was the only one who resigned over the post. He said the organization understands that higher-functioning people with autism may have a different point of view about the issue.

“The people who are not sick, not unhappy, and are totally fulfilled and happy with their differences, we totally support them as well,” Rosen said. “We’re not looking to change anybody, we’re looking to support and get services for everyone who needs them.

“What that column had was a lot of empathy for those who are struggling the most. But for those who just need support and services, we work for them as well.”

Eight years ago Autism Speaks could pretend to be ignorant of the fact that much, a great deal in fact, of the criticism they get is from parents like me. Parents of children. Children who are “struggling the most”.

Then there’s the old “they see autism as a good thing” bit:

He said some people with autism feel it’s “a good thing” that just makes them “neurologically different. It’s a matter of diversity, and diversity is a good thing. We understand that and get that. They’re proud of their diversity and we salute them.”

Unless John Robison was VERY different at Autism Speaks meetings than the John Robison I’ve seen at IACC meetings, Mr. Rosen had no business saying what he did. Perhaps he could have read Mr. Robison’s resignation article:

I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches. It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.

Many autistic people are aware of this dichotomy. Some of us feel “totally disabled” and others feel “totally gifted.” Most of us – I’d venture to say – feel both ways, at different times, depending on what we’re doing at that particular moment.

It’s so much easier to build the straw man that criticism comes from those who are “totally fulfilled and happy” than to face the criticism head on.

Doing a quick google search, I found these criticisms of Mrs. Wrights op-ed:

A Reporter’s Guide to the Autism Speaks Debacle
by Lucy Berrington, autistic adult

AWN SQUARES OFF WITH AUTISM SPEAKS OVER NATIONAL AUTISM PLAN
by the Autism Women’s Network

A Poem For Suzanne Wright. A Call To Action; A Call To Be. November 15, 2013
By Cheairs Graves, mother of an autistic child.

no more – a letter to suzanne wright
by Jess, mother of an autistic child.

The Price We Pay for Autism Speaks
by Heather Clark, mother to two autistic children

Why Autism Speaks Doesn’t Speak for Me
by Emily Willingham, mother of an autistic child.

And there’s more. I did run into a couple articles supporting Mrs. Wright too. But this isn’t about who has more articles, it’s about the fact that Autism Speaks chose to frame the discussion in a very simplistic and, frankly, insulting way. They dismiss the criticism and ignore the fact that much of it comes from parents. The people Autism Speaks claims to represent in this discussion.

Autism Speaks: it’s time to understand.


By Matt Carey

The Autism Speaks bait and switch with I am Autism

23 Sep

Autism Speaks’ recently debuted their new “I am Autism” video.

Here is Suzanne Wright’s appeal for parents to donate video footage for this event:

“We will all help shine a bright spotlight on autism.”

I find the final video to be far from “shining a bright light on autism”.

I am so glad I didn’t trust Autism Speaks with video of my child.

Autism Speaks endorsed by the United Nations

22 Dec

Its no secret that whilst there are many supporters in the US of Autism Speaks, there are equally as many who are not that keen in both the US and the rest of the world.

I’m of the ‘not that keen’ persuasion personally. I think their history of attempting to silence that voices of autistic people in the name of ‘protecting their brand’ is pretty awful. I think their film ‘Autism Every Day’ in which they set out to portray autism as an unrelenting nightmare for parents – to the extent that they appeared to cast a sympathetic eye on the murder of autistic kids – was about as bad and anti-advocacy as it can get.

I think the owners of Autism Speaks – Bob and Suzanne Wright – are ignorant of the needs of that which they seek to build – a true community of autistic people.

I think the fact that no autistic people serve on the board of Autism Speaks makes a mockery of their very name and very aims. How can you be called Autism Speaks when in fact, _no_ autistic people can speak under your regime? Their press release says they want to:

…promote the dignity, equal rights, social progress and better standards of life for individuals with autism…

Really? Here’s an idea. If you want to promote dignity, then treat autistic people with dignity – don’t assume to speak _for_ them. If you want to promote equal rights, then _give_ autistic people equal rights. Give them a position of power within your organisation from which to speak. These are the kinds of things which will _contribute_ to a better standard of life.

I find it incredible that Autism Speaks are so cynically paying lip service to any number of ideals that seem to establish them as a valid autism organisation. I have no idea what their end goal is and I have no real idea why they are going about this in such a way.

However, I want to publicly state that I have no real confidence in the Autism Speaks that the Wrights have control of. I respect the AS stance on science by and large but that is just one aspect. I have no respect for the way the Wrights comport themselves as advocates for autism and I feel strongly that all they do is pay lip service to lofty sounding ideals which will help them get what they want. I think the UN have made a bad choice here and want to bring this matter to the attention of the many of us (biomedders and ND’s – this is one issue we largely agree on) that view AS with suspicion.

Memo to Bob and Suzanne Wright

22 Oct

Bob, Suzannewelcome to the UK.

I read your interview in the Telegraph. Fascinating. I’d like to highlight a few points.

“We want the best minds in the world to focus on this,” says Wright. “And we want the UK to be a big player in the global movement.”

“Until now it seems to have passed under your radar,” adds Suzanne – a statement that could anger all the British activists who have been working in the field for decades.

Um yes, just a bit. You see, in the UK, we already have some of the best minds ‘working on this’.

And ‘passed under our radar’? One could assume that Suzanne Wright has a monumental gift for saying stupid things after reading that. Maybe she hasn’t heard of the National Autistic Society a parent founded organisation formed over 40 years ago in 1962. Maybe she hasn’t heard of it because it doesn’t cry about ‘the children’ all the time and because it recognises the fact that autistic people have a voice (no autistic people are on AS board whereas autistic people are represented at many levels of NAS) and are – in the main – adults and it tailors its aim appropriately. Whilst NAS is far from perfect it has learnt the necessity to respect autistic people for the fact that they are autistic. Something the Wrights aren’t even close to. If the Wrights want to get any traction in the UK they need to shut their mouths and listen to NAS.

And then the anti-vax rhetoric starts, giving lie to the idea that AS are pro-vaccine.

….The last vaccine Christian had before he regressed was MMR – that’s why my daughter concentrates on that. I don’t know whether his autism is linked: it was certainly coincidental, what we don’t know is if it was causal. Nor do we know whether the thimerosal (the mercury-based preservative used in vaccines) is a factor, although mercury is clearly poisonous. Governments want to run from that issue but they should become more aggressively involved. They have to follow children through to see if there are any effects.

Well Bob actually we do know if his MMR shot was causal. It wasn’t. We also do know if thiomersal is a factor. It isn’t.

I personally haven’t seen a government ‘running from the issue’. I’ve seen government spokespeople repeat what science tells us. There is no link. No matter how much people think there is or believe there is, based on the available evidence, there isn’t. Science has followed through to see if there were any effects. There weren’t. How much clearer does it need to be Bob?

Virginia Bovill perfectly sums up my own concerns about you and your wife’s organisation:

The other major source of concern is Wright’s focus on prevention and cure. This upsets Virginia Bovill, founder of TreeHouse, the charity hosting the lecture, who is currently studying for a DPhil on whether the quest to prevent and cure autism is morally justified. “Where would prevention lead – to ante-natal testing and abortion?” she asks. “The thought of a world without all the people I have met with autism is not a world I would want to live in. I would rather people said: ‘They are here, autism is here – how can we help these children fulfil their potential; how can we support their parents?'”

This is a very British pragmatism. The issue is right here and needs to be addressed. Do you want to help or do you want to force through your own beliefs simply because they are your beliefs? If the latter please just hop back on the plane. We don’t want you here.