Autism Speaks' New Board Members Include No One with Autism

It is just a shame that the thought process going in is not as open minded with Autism Speaks. Policies of genetic research over practical family support research has led to a division in the community. It is sad when a child in a community can not afford basic therapies and the community is sending off 10’s of thousands of dollars to NY. A lot of their research will lead to a test that causes parents to abort very viable people. We must demand the front end be as open as the back end. Trying to play up to the mainstream just to get funding and shying away from issues that matter to parents is not speaking for many families and individuals on the spectrum.

Families need help today. Not another researcher telling me that my son does not mimic me when I yawn. I would have taken the money for that one. Frustrated… You bet.

Never should an organization be spending thousands upon thousands in rent or showing $50,000 to rent a plane on a balance sheet during the economic crisis at hand.

It is time for Autism to listen and act on behalf of the families & individuals living with Autism. Remember the ones who founded the first walks and ask if they are any better off today? Sorry to get on my soap box.

http://www.causecast.org/member/tanners-dad

I agree, it’s kind of rude of Autism Speaks to exclude people who are capable of speaking for themselves! Thanks for making this point.

As a parent of an autistic kid, I dont have time for all this mondane societies and all the meetings involved. My wife and I are too busy working and trying to make enough money to pay for the non-insurance-covered ABA therapy and all the supplements needed for our autistic kid. The little time left in the day is to spend with our kids. So it does not bother me who get appointed to the board. What bothers me is all that research money wasted on genetic research (when even geneticians know that there is no epidemic caused by genetics)and other researches that do not answer to any parent immediate concerns. “Autism Speaks’s” and before that “Cure Autism Now” have up to now wasted hundred of millions of dollars in ” research”. The results, unfortunately are scarse. Not even a lollipop that can calm down our autistic kids.
Sadine

Lisa, you make an excellent point. While parents and partners are important, hearing directly from the community is most important. Autistic adults have grown up dealing with all the problems, and more, that are faced by parents and PWAs and can offer a special insight into what is needed to help deal with day to day life.

“I can’t help but wonder why the organization doesn’t open its doors to those with autism who are ready, willing and able to – speak! “

Simple, and increasingly obvious – they don’t want us and don’t want to listen to us. They envision a world *without* autism , they are starting with their own little world.

Putting someone with ASD on the board would offend too much of their consistency. An autistic board member would make it hard to deny our existence.

The stated mission of Autism Speaks is progress towards a cure for autism. The only people that are vocally demanding autistic individuals be present on their board are people who disagree fundamentally with the idea that a cure is a worthwhile endeavor. Why not put GreenPeace members on the board of BP oil?

The people who do not believe a cure for autism is warranted have every right to form their own organization, raise whatever dollars they can, and promote whatever message they’d like with those dollars. Imagine the outrage if they did so; and parents who want to cure their children went on to demanded placement on their boards of directors! It is absurd.

Dear jypsy & Jim:

Several years ago I would have told you both that you are full of [whatever]. Times have changed…

I fully agree with you. I look at this refusal to have a PWA on the board as an extension of the curebie mantra.

These people, like the curebies, look at you as if you are broken, and, since you do not want to be cured, there just has got to be something wrong with you. You make them feel uncomfortable.

I was “cured”, BTW, by my son with CP. When he was 12 we were discussing possible surgery, and he insisted on being part of the discussion since it is “MY BODY”. He asked the neurosurgeon excellent questions that neither of us thought of. He opted for the surgery, and his neurosurgeon asked him if he could have other kids call him to discuss the surgery. Since then, he is a full partner in decision making, and we often defer to his choices.

The point is, suppose I were to join the board then I would attract the hatred of my fellow autists for selling out, it would be a no win situation wouldn’t it?

At least I have had the satisfaction of telling Mr Wright at a public meeting in the UK (where Autism speaks is still met with a salutory scepticism), that he is not an advocate to my way of thinking. full of self puffery a slippery media person, and I don’t suppose any of the board of autism speaks in the US have any real idea what it is all about.

At least I am an autistic on the board of an autism society that matters, that recognises adults. And heck we have forty years march on these ignorant media hype upstarts.

And no I am not a token, I am on the board because I am capable, and I suppose that is what scares the celebs on the autism speaks board because I doubt if they really are.

“Constituency,” not “consistency.” Guess that will teach me to write in a hurry, eh?

Like many people w/ASD, I don’t really care if parents want to pursue a “cure” for ASD. I don’t care if they want to join together to form organizations to do this. But that isn’t what Autism Speaks is doing.

According to their mission statement, “Autism Speaks aims to bring the autism community together as one strong voice . . . ” If this is truly their goal, they cannot achieve it without having people with ASD on their Board of Directors.

I have heard this point mentioned many times. So, let me ask you, who would you select to be on the board of Autism Speaks? If you are serious about this complaint you should be able to name some people who you think would be able to serve.

The person would have to be able to handle the job which implies a very high level of functioning. I would even say that most “typical” people would not be cut out to handle the responsibilities of a board seat.

And do you think that if you found a person with autism who would be suitable candidate that they would be able to fairly represent the views of their less fortunate brethren?

Do you think that such a person would be respresentative of those people with autism who can’t speak or express themselves?

This person would have to be at least in their twenties if not much, much older. How old are the other board members? Do you think that a person with autism who is in their forties will understand and fairly represent a young child struggling with autism? After all, the overwhelming majority of people with autism are presently under 18.

I don’t think you will be able to find many people who fit the job description who aren’t out to grind their own ideological axe who would be representative of the average person with autism. So please, name one.

MJ – you’re putting an awful lot on one person. I can’t imagine that anyone could represent ALL people with autism! But if you’re asking whether I personally know anyone I’d recommend for the job of board member at Autism Speaks(not knowing whether they’re interested in the slightest), I can mention -

international speaker/author/PhD Stephen Shore
ditto ditto Temple Grandin
GRASP Exec. Director Michael John Carley
self-advocate/autism activist Ari Meeman
researcher/Ph.D. Michelle Dawson

and many others.

Again, I have no clue whether these or other people with autism would have any interest in serving on the board of Autism Speaks. And I CERTAINLY wouldn’t expect them to represent “all” people with autism.

But they definitely have more credentials relative to their knowledge of autism and the autism community than most people… they certainly have the education and experience you would hope for.. and they are more than capable of speaking from the perspective of ONE person with autism.

Lisa (autism guide)

“After all, the overwhelming majority of people with autism are presently under 18.”

Only if you use Autism Speaks math

Interesting the mention of the five candidates who autism recommends be on the board of autism speaks. Not a single one of those five are in favor of a cure for autism. Two of the five persons have asperger’s syndrome rather than autism. Sort of like saying a member of the Ku Klux Klan should serve on the board of the NAACP or at least five republicans should be members of the DNC to have equality.

Basically this complaint comes from neurodiversity people who are just too inept to raise their own capital for their own misguided agenda.

When I suggested that I might be a suitable candidate for the board as a person on the spectrum who wants a cure and prevention of autism (the stated goal of autism speaks) and I said if i were running the show that I would discontinue AS’s funding of the lauren Mottron lab which employs michelle dawson who spreads anti-cure rhetoric in at least some of her writing and equates the desire to cure a person with autism with intolerance, I was greeted with abusive nasty rhetoric.

This seems to be a pattern of the anti-cure movement among high functioning autistics, to try to hijack the capital of others with whom their agenda does not agree with, just as michelle dawson has proposed that researchers who don’t agree with AS apply for grants with them and Ari Neeman and ASAN saying that suggestions should be made to the IACC which grew out of the comating autism act which they oppose.

Jonathan – when last I checked, Asperger syndrome was a part of the autism spectrum. And Autism Speaks was doing its best to suggest that it represents the entire autism spectrum. So I can’t see how involving individual with AS could be counter to the Autism Speaks mission.

As to wanting a cure… well, of course, that’s a complex issue. Many adults on the spectrum write that they would like to see effective treatment for certain symptoms of autism (sensory dysfunction, anxiety, etc.). But you’re right: few of those who are active in the community are seeking a cure, per se, for the differences in the way they think or observe the world.

It would be fair to say, though, that virtually everyone in the autism community is seeking something other than a cure: they’re seeking an appropriate education; they’re seeking decent housing; they’re seeking fulfilling careers. Even if there is disagreement over cure/no cure, surely there’s a place at the table for people with autism when it comes to discussing services, programs, and opportunities.

After all, Autism Speaks is not only about research. They’re actively lobbying for insurance, providing community grants, and much more.

Lisa (autism guide)

I myself don’t really mind who they appoint to what. I also know many orgs. have a cure theme. Bio medical does. Not every person or parent is going to have the same expectations or dreams, so not every org. or site is going to be for every person and the ones that aren’t for me in particular, why give it a lot of thought? I also have to agree, placing a person with autism or an autism spectrum disorder would be the same thing: does Autism Speaks speak for you as a whole? Would the person who had an autism spectrum disorder speak for my child? My child doesn’t want to have autism any more, he’s about tired of it
Bottom line: there is no one person who can speak for all, so don’t put expectations so high up. Does it bother me that no one on their board doesn’t have autism? No, it doesn’t, there’s other sites and orgs. to go to. Try not to expect so much from Autism Speaks, and go to where the expectations are better met.

Hi Lisa I hope you will read my post on my blog autism’s gadfly about your strange choice of candidates for the AS board. Autism with speech delay and more severe symptoms are not the same thing at all as asperger’s so those with asperger’s can’t have the same understanding of these problems as some of us do.

Though autism speaks does engage in other activities besides research for a cure that is their sole purpose and their stated goal. Why should they appoint members of their board who totally disagree with that stated goal and what possible reason could anyone from the anti-cure neurodiversity movement have for serving on the board of an organization whose goals they so adamantly oppose, other than trying to hijack the acquired capital of a large charitable organization for their own purposes which are diametrically opposed to the stated purpose of that organization because they are too small and impotent a movement to raise their own capital to pursue their own agenda rather than relying on places like autism speaks or the IACC which grew out of the combating autism act which they oppose? I hope you will read my post an autism’s gadfly.

The difficulty of finding such a person, even from outside of the ND movement, should give Autism Speaks a huge pause to think about whether or not they actually are representing people with autism, or just their own small sub-section (which is put by a least one prominent supporter as being in the low tens of thousands)

Small, regional pro-cure groups can and have managed to get people with ASD’s onto the board, and we certainly don’t have that trouble in the UK, nor do organisations for other conditions such as schizophrenia and dementia, so why has Autism Speaks failed?

Jonathan – did visit and comment on your site. Bottom line, that list of names really was not intended as a political selection. Rather, it was intended to say “YES, there are qualified and intelligent adults with autism who are more than twenty years old!” They happen to have high profiles, so they leaped to my mind.

But I have to say that, since Autism Speaks has effectively gobbled up a huge percentage of American and even international money and influence available relative to the autism community, it seems unreasonable to exclude the very people for whom the organization was created.

Even if “cure” is the intention in the long run, surely the board of Autism Speaks is interested in providing support, education, medical care and opportunities for those WITH autism. After all, many of those individuals are their own children!

Lisa (autism guide)

Lisa – I never said that I expected you to find someone who “to represent “all” people with autism”, I said “would be representative of the average person with autism”. I am sure you can appreciate the difference between the two statements.

And while I am glad that you had “one of those ’so there!’ moments” I think you missed the main point. The point being that the most of the people with autism who are able to serve have already long passed the point where most with autism are able to go.

I am not as concerned about those who are still able to stand on their own and represent themselves. I am more worried about those who don’t have the ability to help themselves. I believe that is the group that AS is focusing on trying to help. Most of the people you named are in the capable to take care of themselves category, not to mention the majority fall into the ND camp.

However, I am not sure why it is exactly I am responding since your list was, in your own words, “not a carefully reasoned selection of individuals”.

Strange this ‘cure’ bent. I always thought that was just a nice rhetorical device employed by Autism Speaks for funding purposes. Cure has such a nice ring to it. The fact that it’s impossible to cure a brain configuration set in the first trimester of pregnancy doesn’t seem to bother anybody.

Of course if you want to improve things, which seems to be really what people mean by cure then you need the sort of understanding of autism, which is what Mottron’s lab is generating. If interventions were based on the data from that and U Wisconsin and some stuff from Harvard, then interventions would be better tailored to the clientele and much more likely to improve things – or cure various things if that’s your preferred terminology. It’s not at all good word choice but what parent cares about that? They want to improve things for their kids and hang the terminology.

MJ – I’m thinking this conversation is running out of steam, but I do want to say that I honestly don’t think there is a “typical” person with autism.

In fact, I don’t know that there is good research showing that MOST people with autism are higher or lower functioning; older or younger; more or less capable of sitting at a table and having a useful conversation.

I do know that Autism Speaks focuses most of its PR on people with greater challenges. And I know it does not include or invite people with high functioning autism to the table. Yet it does say, in its mission, that it intends to speak for and unite people across the spectrum.

Personally, I think it would make sense to split “autism” diagnoses such that we didn’t have to think of a single disorder as including people who are so different from one another. But at the present time, all those individuals I listed (and many, many others with similar credentials) really and truly are diagnosed on the autism spectrum. Just like the most profoundly disabled folks with similar diagnoses.

I can’t think of any reason why people with the ability to represent themselves relative to funding for programs and research shouldn’t have a seat at the table.

Lisa (autism guide)

MJ – can you cite a reference for that “After all, the overwhelming majority of people with autism are presently under 18.” ?

Such a reference would be artificially skewed toward a younger age, as adult diagnostic services are expensive and uncommon compared to youth services, therefore most of the new expansion in criteria would only be applied to the younger end of the spectrum. Of course, one has to believe that expanding the criteria is a major factor in the increase in diagnosis (alongside awareness and availability of diagnositic services) in order to apply this critique to the figures.

It’s irrelevant anyway, the arguement here is wheter or not a person with ASD will be an appropriate member for the board of autism speaks. If people without any form of autism, who are older than most people with autism, and who are higher functioning than most people with autism can get onto the board merely because they have a relative with autism, then there’s no reason why a person with ASD should have to jump through hoops that they haven’t.

Thus far all excuses given for not having a person with ASD on the board also eliminate the reasons behind why the current board members are on it. If the excuse was to do with lacking function to be on the board then it would be reasonable, but other organisations can find people with ASD’s to be on the board, so Autism Speaks really has no excuse.

Now – if each and every person approached refused a seat then they might have an excuse, but such a situation would indicate that they don’t really represent who they say they do.

Lisa, I’m on the board of two autism organizations, the Autism National Committee and the Asperger’s Association of New England, both of which have long had autistic adults in significant governance roles.

The British National Autistic Society has autistic adults in the top level of its governance.

Even the ASA has several autistic national board members, and at least a couple dozen autistic board members and officers among its state and local chapters.

It’s high time for Autism Speaks to follow suit, or to step aside from its claim to be bringing the “autism community” together as one voice.

What other population can you think of, within contemporary society, that is completely “spoken for” by non-members of that population, and that has no say in policymaking that affects it?

Lisa – I never said that I did not believe that the people you mentioned where not diagnosed on the spectrum. I said that I did not think they were representative of the majority of group of people who are currently on the spectrum – big difference.

You say that Autism Speaks claims to “in its mission, that it intends to speak for and unite people across the spectrum.” Yet, I don’t see any such statement. From the mission statement on their web site :

“Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis.”

Notice the use of the word community – the community is far, far larger than the group of people who have the diagnosis.

“I can’t think of any reason why people with the ability to represent themselves relative to funding for programs and research shouldn’t have a seat at the table.”

I would normally agree with that. However, when the majority of the people clamoring for a seat fall into a group who believe that autism is not a disorder/disease but is a different state of being and as such should not be treated, and the group is dedicated to treating this condition what you are left with is an absurd contradiction.

It would be like having the having a group that is trying to find better treatments for cancer having a board member who though cancer was a good thing.

Or putting an CEO for a tobacco company on the board of a group that is attempting to get smoking banded.

So why would AS select a board member who has the opposite goal from the organization?

MJ, you stated – “I said that I did not think they were representative of the majority of group of people who are currently on the spectrum – big difference.”

I’m not sure who this majority of people is, or what beliefs or challenges they’re supposed to have. So far as I know, there are no numbers available to provide any such information.

Meanwhile, in essence, what you’re saying is the the organization that has taken on the job of “speaking” for autism really shouldn’t include adults with autism on their board because those adults with autism don’t represent people with autism. Instead they represent some other group. Namely?

Again, Autism Speaks is CALLED Autism Speaks! Presumable “Autism” refers to people with autism. And, again, I ask, how can you exclude people with autism from an organization that speaks for them on a national and international level? It makes zero sense!

Lisa (autism guide)

I fail to see how “Autism Speaks should keep up with developments in other organisations and other disability communities and include a person with the condition on the board or panel”.

is considered a direct equivilance to:

“Autism Speaks must appoint a person on the spectrum who disagrees with them, even if a pro-cure autistic person were to be available”

Maybe MJ, JM or one of the others would like to explain why they have trouble seeing the difference when no-one else here does.

MJ

“I would normally agree with that. However, when the majority of the people clamoring for a seat fall into a group who believe that autism is not a disorder/disease but is a different state of being and as such should not be treated,”

Since when has anybody said that seeing a difference in being means ‘no treatment’. Of course it also matters what you’re calling treatment and if you have properly supportive intervention programs – who would have a problem with that? And please don’t treat ‘cure’ like there’s a hope in hell of getting one. No sane person believes that. The best hope for ‘cure’ is still plain old slow plodding intervention. But there’s no glamour in that and it makes for lousy advertising. So, the folks selling programs or even hope use ‘cure’ and that’s not even ethical since it does not exist.

The claim that ND = no treatment is a very odd one.

Mostly this claim seems to be based on observations of a few posts on a few blogs of a few people who are often very politically motivated, or who are making the claim in light of a much broader context, or who are making off-kilter posts during a stressful period.

The people who claim that you should not treat autistic traits are correct. You should treat the disjoin between the persons desires and values, and their ability to attain said desires and to live up to said values.

I doubt you will find a non-profit service that advocates treaing autistic traits merely because thay are there. Certainly the most prominent ND proponents (that self-identify as such) I can think of are either autism professionals, are involved in advocating for services, or are doing reseacrh into autism.

The whole situation is odd. People with physical health conditions do not recieve this sort of scrutiny over their values and interests (except people with diabetes or obesity for some reason) yet any sniff of the condition being in the mental health world and we’re suddenly custodians over what is right and moral.

Nothing seems to be easier than seeing someone whom you can help but not helping.
I suggest we start giving it a try. Give love to the ones that need it.
God will appreciate it.

I’ve found autism.about.com by using Google

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Sigh. I grow weary of high functioning austistic people trying to convince the rest of us that autism is a good thing. Please. You think you know what autism is because you are autistic? Think again. You know what your autism is like, not what my child’s autism is like. I don’t want to cure you. If you are happy with who you are, that’s wonderful. But stay out of my child’s life. Who are you to imagine that you know what it’s like for my child, or others with autism who are not as lucky as you? You can speak, you can write, you can form coherent sentences. You have a sense of self and pride. I imagine you are potty trained too. And that you don’t scream or hit or bite for no apparent reason. How nice for you.

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Josh: I don’t understand why churches and ‘family groups’ spend millions of dollars a year on abstinence-only instruction when a World of Warcraft account only costs fifteen dollars a month and has a much better record of ensuring virginity.

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