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.

25 Responses to “Autism Speaks endorsed by the United Nations”

  1. jon Mitchell December 22, 2008 at 17:06 #

    Other than the case of Kelly Beckman’s webpage mocking autism speaks, in which the legal issues are questionable. I wonder if in fact you can give a single example of AS trying to literally silence the voice of any autistic person.

    While I agree the question of why there are no autistic board members is a legitimate one that deserves a legitimate answer I am not sure people who ask this question have made an effort to contact AS and ask them. I know Janet Bain emailed them and was not given a response and Lisa Rudy and Mike Stanton have contacted them. Hopefully they will answer that question and if they don’t then they are wrong for not providing an answer, but they may have a legitimate reason for not having a board member on the spectrum and maybe someday they will respond with an explanation or put someone with an ASD on their board.

    Autism speaks certainly does not presume to speak for you or anyone else in the neurodiversity movement, no more than the republicans speak for the democrats in the u.s. or the torys speak for the labor party in britain. They have a goal of curing and preventing autism. They have made that very plain. It is a goal that members of the ND movement say they are totally opposed to.

  2. Jon December 22, 2008 at 17:45 #

    I don’t think that the criteria for being designated an NGO associated with the DPI involve anything like UN approval or endorsement of Autism Speaks. To be honest, I think that – while I have many concerns about Autism Speaks – it’s not unreasonable for the DPI to interpret them as meeting these criteria, although an argument could be made on some of these criteria.

    I think the aim of having associated NGOs like Autism Speaks isn’t to have them as *the* voice of autism in the UN, or to indicate UN support for their message (associated NGOs often disagree). Instead, it’s to have them as one voice among many in UN debates. Other organisations with different views can participate in these debates, and could also become associated NGOs (issues around funding etc. for this type of activity is, of course, an issue, though).

  3. alyric December 22, 2008 at 21:30 #

    The way to protest this is through the UN Convention on the Rights of Persons with Disabilities. DPI/NGO Committee didn’t do their homework because in at least three areas it could be argued that AS is in violation of the convention because they don;t have autistic representation. The preamble states that organisations and states must consult with persons with disabilities in regard to policy making and there are also the areas of exclusion (discrimination) and participation that are relevant. So, need to contact the chair of this convention to let them know what DPI/NGO has done, NOT DPI/NGO. Having made the decision they won;t go back on it and it’s only reviewed every four years, but this may be a way to encourage AS to het some autistics on board.

  4. David N. Andrews M. Ed. (Distinction) December 23, 2008 at 05:01 #

    “Having made the decision they won;t go back on it and it’s only reviewed every four years, but this may be a way to encourage AS to het some autistics on board.”

    They’ll still disregard the autistic voice.

    I wouldn’t trust those bastards to support a football team, let alone support the autistic voice.

  5. Ivar T December 23, 2008 at 15:20 #

    Mitchell wrote:
    Other than the case of Kelly Beckman’s webpage mocking autism speaks, in which the legal issues are questionable. I wonder if in fact you can give a single example of AS trying to literally silence the voice of any autistic person.

    As Autism Speaks and the organizations that they have merged with has been the keepers of large sums of money that donators have expected to be spent in the interests of the autism community, they have basically silenced autistic people by favourizing other voices.

    Mitchell, you seem to say that Autism Speaks’ goal is to cure and prevent autism – whatever the larger autism community thinks of that. Well, if Autism Speaks goal is not to serve the interests of the autism community, then what kind of organization is it?

  6. mike stanton December 23, 2008 at 17:16 #

    Well, I have not yet had a reply to my request for information concerning autistic representation on Autism Speaks. For so long as Autism Speaks claims in its mission statement that Autism Speaks aims to bring the autism community together as one strong voice it places itself under an obligation to either to make sure that all voices are heard or to be more specific about what it means by “autism community.”

  7. jon Mitchell December 23, 2008 at 17:43 #

    Ivar,

    They are not silencing anyone’s voices. Anyone in the neurodiversity movement, the mercury militia or anyone else who disagrees with autism speaks agenda or what they do for the autism community is free to go out and raise capital and engage in activities they want, no one is stopping them. The mercury militia has done this, but they seem to prefer spending money on $100,000 newspaper ads then doing any research to prove their hypothesis. It seems the evidence is overwhelmingly against their hypothesis.

    The neurodiversity movement who does not like autism speaks, is just a small fringe group which appears bigger to some than it really is because of the internet.

    I strongly suspect the larger autism community of large, which is composed of parents, autistic children and adults with autism far more severe than anyone in ND longs for a cure and prevention of autism and supports autism speaks in that regard.

    Contrary to what you and others believe your views are most likely in the small minority and are not representative of the autism community. Most people agree that autism is a horrible thing, not to be celebrated and would need a cure or at least something else to help change the brain so the person could function better.

  8. passionlessDrone December 24, 2008 at 02:36 #

    They are not silencing anyone’s voices. Anyone in the neurodiversity movement, the mercury militia or anyone else who disagrees with autism speaks agenda or what they do for the autism community is free to go out and raise capital and engage in activities they want, no one is stopping them. The mercury militia has done this, but they seem to prefer spending money on $100,000 newspaper ads then doing any research to prove their hypothesis. It seems the evidence is overwhelmingly against their hypothesis.

    The neurodiversity movement who does not like autism speaks, is just a small fringe group which appears bigger to some than it really is because of the internet.

    I strongly suspect the larger autism community of large, which is composed of parents, autistic children and adults with autism far more severe than anyone in ND longs for a cure and prevention of autism and supports autism speaks in that regard.

    It would seem, a quick check of the reality of the situation would confirm these statements.

    If, for example, autism was always as prevelant as it is now, and the notion that it should not be cured as widely espoused as some would like, there should be no shortage of well funded organizations to promote this message. Where are the very wealthy celebrities to take this message to the media? Certainly there ought to be many, if they existed in a percentage similar to wealthy individuals of the opposite mindset. Such an organization should have no problems raising capital to spread their message if there was sufficient manpower to organize such an effort, and the goal was seen as laudable enough to merit donations by a sizeable percentage of the population.

    – pD

  9. Joseph December 24, 2008 at 03:09 #

    Of course, pD, you’re just speculating. In any community, those who are visible online are but a small fraction of the whole community. I don’t think it’s any different with neurodiversity. Besides, your view is not consistent with some research.

    If, for example, autism was always as prevelant as it is now, and the notion that it should not be cured as widely espoused as some would like…

    About that, you must be unfamiliar with the history of the neurodiversity movement. While disability rights ideas have existed for some time, neurodiversity is fairly new, the term having been coined in the late 1990s. Don’t Mourn For Us dates back to only 1996 if I recall correctly.

    It’s a silly argument to make too. If homosexuality had existed in the 1800s, why did gay rights start in the 1960s?

  10. Steve D December 24, 2008 at 06:31 #

    pD –
    Your comment belies a total lack of understanding of the “neurodiversity” movement.

    What you are attempting to paint as a fringe movement actually embodies the vast majority of autistic individuals and their loved ones, as well as the majority of people who fund and directly perform research in the field. Lets not forget also those who provide any of a huge range of services professionally to autistic people, who are also members of “neurodiversity”.
    You see, being “neurodiverse” pretty much means not attaching negative stigma to the autistic condition. Not attaching words such as “damaged” or “broken”. Not viewing elimination of autism as a worthy goal.
    For a counterpoint to the “ND” view, take a look at the appalling piece posted today on Age of Autism by Kent Heckenlively, in which he describes in detail what he feels is wrong with his daughter. Here’s a telling excerpt:

    “Maybe she was simply damaged. How might you fix that? Stem cells were my answer.”
    Precisely 16 million stem cells, to be exact!

    So please, pD, go ahead and espouse your misconceptions and, ergo, misrepresentations of what you feel the “ND movement” is about, and extend your logical progressions to whatever Nth degree you see fit in order to not upset your personal worldview.
    But if you catch some free time, maybe think about reviewing this conveniently posted list of Canards , and pay particular attention to #’s 3, 11, and 12.

    Take care!
    -sD

  11. Kev December 24, 2008 at 10:30 #

    Jon (Mitchell) – you’re going to have to explain to me why its up to anyone ask Autism Speaks why they don’t have autistic people on a board of an org called Autism Speaks. To me its frankly bizarre that any org claiming to want an end to discrimination _doesn’t_ have any autistic members at board level.

    pD – I frequently disagree with you but I rarely find you silly and assumptive. Today you sadly have been. Please contact me privately for an invite to my home where you can judge for yourself if my autistic child meets your criteria for disabled/severe enough.

  12. Ivar T December 24, 2008 at 10:40 #

    I feel celebrity stunts is a keyword in pD’s comment.

    Mitchell, I didn’t actually claim that the majority of the autism community disliked the idea of cure and prevention of autism – however, you just said that you suspected the larger community to be all for Autism Speaks.

    We all often like to think that our views are the most prevalent, in order to feel that our views are the most legitimate. I suspect that you for the same reason throw the word ‘fringe’ after the neurodiversity community.

  13. passionlessDrone December 24, 2008 at 15:01 #

    Hi Joseph –

    Of course, pD, you’re just speculating. In any community, those who are visible online are but a small fraction of the whole community. I don’t think it’s any different with neurodiversity

    Well, part of the problem here (I think) is that I was trying (but failed) to italicize part of jon mitchells post. Technology has failed me again.

    I wasn’t really discussing ND as a whole so much as noting that the existince of a powerful message spreading organization with one message (cure autism) seems to have much more funding, and thus message broadcasting capacity than a group of people with another message (whatever ND is, whatever my take on that is, is seemingly wrong, I don’t want to get in any more trouble).

    This is, after all, the reality of the situation, is it not? Has ‘ND’ been endorsed by the United Nations? Has ‘ND’ raised massive captial through donations? Are there any prominent wealthy individuals who have dedicated large sums of dollars to the message that ND espouses? If they be stunts, what is keeping someone who dislikes the message of Autism Speaks from also performing a stunt to raise money to spread the message they find more preferrable?

    Now, the next logical question might be; why one would a set of people with one set of ideas (cure autism) be so much more able to raise capital and consequently spread their ideas more widely than another set of people with other ideas? After all, Autism Speaks has prominence for a single reason, they have dollars and spend them to get their message across. These dollars were in large part raised through donation. This question would seem even more vexing if we were to believe that the general population was evenly split on the idea of whether or not autism should be cured. If there were equal pools of donators for each set of ideas, why has only one set of ideas gained traction?

    One explanation for what has been observed would be precisely what jon mitchell has described; that in general, more people than not want autism cured.

    Perhaps there are other explanations, but no one has offered any in their responses.

    About that, you must be unfamiliar with the history of the neurodiversity movement. While disability rights ideas have existed for some time, neurodiversity is fairly new, the term having been coined in the late 1990s.

    Autism speaks was founded in 2005, so neurodiversity has had a ten year or so headstart.

    You guys might be surprized to learn that I’ve taken more than a little from the ND standpoint (or at least my poor understanding of it) discussing autism online with you.

    – pD

  14. passionlessDrone December 24, 2008 at 15:05 #

    Hi Kev –

    pD – I frequently disagree with you but I rarely find you silly and assumptive. Today you sadly have been. Please contact me privately for an invite to my home where you can judge for yourself if my autistic child meets your criteria for disabled/severe enough.

    I honestly do not know where this line of attack, very similar to what Steve posted, has come from. Genuinely.

    From what I have read that you have posted about your daughter, she is has severe autism. I do not believe in my post I attempted to make light of that; if you somehow took that from my post, please accept my apologies.

    I have tried to make more concise my thoughts on the responses I got in my post to Joseph.

    – pD

  15. passionlessDrone December 24, 2008 at 15:37 #

    Hi Steve D –

    What you are attempting to paint as a fringe movement actually embodies the vast majority of autistic individuals and their loved ones, as well as the majority of people who fund and directly perform research in the field. Lets not forget also those who provide any of a huge range of services professionally to autistic people, who are also members of “neurodiversity”.

    I can’t help but notice that your definition of the ‘vast majority’ is completely speculative.

    Well, all my loved ones, and everyone who know my son want his autism cured. And of the twenty families with children with autism we see with some regularity, they want it cured. If any of the therapists that work with my son could cure him, I am sure that they would. It has brought him absolutely nothing meaningful and in fact, has imparted tremendous hardships on him. He is a sweet, happy boy, but there is absolutely no reason to believe that he would not also be sweet and happy if he did not have autism. Kids without autism are happy and sweet, you know.

    This discussion gets so difficult because no ddoubt, we hold different ideas of the notion of a cure.

    You see, being “neurodiverse” pretty much means not attaching negative stigma to the autistic condition. Not attaching words such as “damaged” or “broken”. Not viewing elimination of autism as a worthy goal.

    This is exactly why Autism Speaks is able to raise enormous amounts of capital while people with the ideas you assign to neurodiversity above, are not. This is a fringe position.

    The basic, unassailable facts of what we know about having and growing up with autism do not support this position. It is absolutely undeniable that people with autism are more likely to live in group homes, wind up unemployed, suffer from a variety of abuses, die earlier, and have a number of medical disorders than their undiagnosed peers. These are bad things, and no parent in their right mind would ask that their child be more likely to have these things happen to them. It would seem, however, that some parents who would like to keep those things from happening to their children are villified. Go figure.

    Canard 3: I have addressed this previously with Kev.

    Canard 11: What does science have to do with this discussion? If you are referring to our discussion on the AS boards, why not go back there and refute some of the points I made? If my arguments are flawed, this should be simple.

    Canard 12: Why give your daughter speech therapy though? Is there something negative about not being able to speak? Why bother with melatonin; after all, sleep disturbances are well known to be associated with a diagnosis of autism, and there isn’t anything negative about that.

    In any case, I haven’t made this argument to you, as far as I know.

    – pD

  16. jon Mitchell December 24, 2008 at 16:50 #

    Hi Kev- Yes I feel that this question, which usually comes from neurodiversity proponents, who are totally opposed to autism speaks’ agenda, should ask autism speaks’ why they have no board members with autism and get their side of the story. Until recently, there don’t seem to be attempts to ask. They might have a legitimate reason for not having a board member with autism. I have my own theories as to why there are several reasons for no autistic board members, but I don’t think it would be proper for me to speak for autism speaks. So, I believe the onus is on those who frequently raise the point publically on the internet, to dig deeper for some answers.

    I realize, that recently some people have attempted to do this and have apparently been rebuffed by AS for one reason or another and I agree that is wrong. They should give some sort of answer. I am not defending AS by any means if they refuse to answer. I don’t believe they are under any obligation to put a person with autism on the board though, but I would certainly not have any objection to it. Donna Williams, if i am remembering correctly, was on the board of CAN which was ND’s favorite whipping boy before AS was created.

    I do not believe that anyone who believes in an ND philosophy should be on AS board for the reasons I described in my previous post. Therefore, I don’t know why ND keeps asking this question unless they want to raid AS’ ready made capital for their own agenda or they just want to use this as an excuse to vent their anger.

    Again, this whole thing falls into the example of ND just being nothing but a very vocal small minority of persons, since they seem to be the only ones asking this question of no autistic board members and this is why AS has not been forced to address this issue. If enough people emailed them, phoned them and inquired about this issue I am failry sure they would give some sort of public response on their web page or maybe even appoint an autistic person to their board. This compels me to believe this concern is only espoused by a small handful of people who would no more assume to serve on their board, assuming AS continues to have the same ideas, than a republican would want to be on the DNC or serve in Barak Obama’s cabinet.

  17. Joseph December 24, 2008 at 17:17 #

    I wasn’t really discussing ND as a whole so much as noting that the existince of a powerful message spreading organization with one message (cure autism) seems to have much more funding, and thus message broadcasting capacity than a group of people with another message (whatever ND is, whatever my take on that is, is seemingly wrong, I don’t want to get in any more trouble).

    That’s absolutely true, and I think that’s one thing in favor of the neurodiversity movement if you think about it. Any other identifiable group in the autism community is well funded. Autism Speaks is well funded. The autism anti-vax faction is well funded; like Kev said, they can even afford ads for $100,000. (I don’t think David Kirby and Dan Olmsted do what they do for free either).

    So how is neurodiversity visible and known with practically no funding at all?

    Has ‘ND’ been endorsed by the United Nations? Has ‘ND’ raised massive captial through donations? Are there any prominent wealthy individuals who have dedicated large sums of dollars to the message that ND espouses? If they be stunts, what is keeping someone who dislikes the message of Autism Speaks from also performing a stunt to raise money to spread the message they find more preferrable?

    Well, no. And is that strange or unexpected? No one is claiming that the neurodiversity message has become mainstream. Try asking the same thing of the gay rights movement in the 1960s.

    Now, the next logical question might be; why one would a set of people with one set of ideas (cure autism) be so much more able to raise capital and consequently spread their ideas more widely than another set of people with other ideas?

    One reason is simply that they have money. The Wrights have money. Handley has money.

    The rest of us aren’t necessarily poor, but we just can’t throw money around. I don’t think it’s necessarily the case that people who embrace the neurodiversity ideology tend to be non-rich (although many are autistic who aren’t employed for various reasons). It could just be circumstantial. Then again, you probably can’t be filthy rich and at the same time not have an unreasonable sense of entitlement.

    Another reason is that certain kinds of efforts will be better able to attract funds. “Fund the cure” is probably an effective way to raise money. “Fund a new rights movement with a new philosophy that no one really seems to grasp” probably isn’t.

  18. Kev December 24, 2008 at 20:27 #

    Jon (Mitchell) – Yes I feel that this question, which usually comes from neurodiversity proponents, who are totally opposed to autism speaks’ agenda, should ask autism speaks’ why they have no board members with autism and get their side of the story. Until recently, there don’t seem to be attempts to ask. They might have a legitimate reason for not having a board member with autism. I have my own theories as to why there are several reasons for no autistic board members, but I don’t think it would be proper for me to speak for autism speaks.

    I would really like to hear your theories as I simply can’t imagine what they might be. There are people with autism on the board of NAS, there are people with Down’s Syndrome on several DS boards. People with mental illness such as manic depression, OCD, schizophrenia all serve on the boards of orgs. What is special about the major org’s in the US? How can they possibly preach an end to discrimination when they are discriminating themselves? Its simply not logical.

    I realise that you are not of the ND persuasion yourself but surely, as an autistic person you must feel curious and slightly disenfranchised by their silence on the issue. You and I disagree on lots of things but I would _love_ to see you on the board of AS – irrespective of our mutual positions on issues you have a legitimate reason for being on the board of an org called Autism _Speaks_ .

    So, I believe the onus is on those who frequently raise the point publically on the internet, to dig deeper for some answers.

    No Sir. I think its up to AS to explain why they are actively discriminating against autistic people.

  19. jon Mitchell December 24, 2008 at 21:41 #

    Hi Kev, okay I will go into some of the theories, but I realize i might be wrong. One reason is that most of the board of autism speaks are wealthy, well-connected people with an ability to get money into the organization. Other than the possible exception of Temple Grandin, there is really no one like that with autism. Also, autistic people unlike the other disabilities you mention have an impaired ability to relate to people which would be a handicap impairing them as far as being board members are concerned. Also, Donna Williams, who I think was on the board of CAN may have had some philosophical changes in terms of how she feels about a cure and may have been a high profile person with autism who was asked and decided not to be on the board. Also, there may be a limited amount of pro-cure autistics who would be high functioning enough in terms of education, etc. who they would know about or who they would approach for the job. Certainly it is not reasonable to put someone of the neurodiversity persuasion on the board. Also, most of the people involved with AS have children rather than adults and because people don’t want to talk about the poor prognosis that adults usually have they are oblivious to the existence of autistic adults since some involved with autism speaks may believe there has been a true rise in the prevalence of autistics and therefore not many autistic adults. Remember, these are just my speculations and I might be absolutely wrong here.

    I don’t recall AS having an anti-discrimination effort as part of their platform. They are basically an organization that raises capital for scientific research which is largely designed to cure and prevent autism a goal that neurodiversity opposes, though they have gotten into other things such as insurnce lobbying the united states congress and other things.

  20. Patrick December 24, 2008 at 21:57 #

    Hey jon, Why do you choose to Pick ON, and Fight with disadvantaged people? (or their advocates)

    Copied from your own damned link:
    autism’s gadfly
    We don’t need no stinkin’ neurodiversity

    At this point as far as I am concerned you have exposed your own Bigotted Ignorant and Uncivilized intentions.

    Don’t bother replying, I’ll probably stick my fingers in my ear Just Like Your Doing.
    (nyah nyah I Caaaaan’t Hear YOU!!)

  21. Dedj December 24, 2008 at 22:17 #

    Jon – those excuses don’t wash. Other organisations mentioned by Kev, or similar to those mentioned by Kev, include people with the condition on the board out of a sense of ethical obligation, even if it’s a token appointment.

    All the excuses you gave could be used by those organisations too, but they don’t use them (although that’s not to say people didn’t when the idea was quite new back in the 80’s).

    As an aside, if they’re having THAT much trouble finding a pro-cure autistic person to sit on the board (or even just a panel, comittee or consultancy group) then that should give them massive pause for thought.

  22. Sarah December 24, 2008 at 22:41 #

    In response to one of Jon’s analogies: It’s fairly standard practice for presidential administrations to have someone from the other party, or at least someone who has a reputation for being more moderate. That’s why Obama’s asked Robert Gates to stay on.

    I wouldn’t be so sure that Autism Speaks would appoint enough people to their board if enough people called and e-mailed. People *have* been contacting them, for several years now. There have been petitions signed by many people.

    Most of the “excuses” you speculated about seem rather unconvincing. For instance, is it absolutely necessary that *everyone* on the board be someone of money and influence? Is that the case currently? I don’t know, but that would be rather odd and atypical, as others have said. Your idea that autistic members’ disabilities would prevent them from being effective board members is even more appalling. (Never mind that autistic people have been board members for other organizations.) Shouldn’t they, as an autism organization, be willing to accommodate an autistic board member’s non-standard communication style? If the answer is ‘no,’ then it’s even more clear that they are in fact perpetuating discrimination.

  23. Michelle Dawson December 24, 2008 at 23:28 #

    Not that providing accurate information will change anything, but back to 2003, I tried to find out why NAAR excluded autistics from their leadership.

    NAAR did not respond to email, so I phoned them. I was shunted to NAAR’s PR person, who did not know why autistics were excluded. I was not allowed to speak with anyone else.

    I’ve spoken with several Autism Speaks officials about their exclusion of autistics, without Autism Speaks providing any actual reason. The only answer I’ve been given is that Autism Speaks is pleased and satisfied that Autism Speaks excludes autistics. They are happy with this situation.

    I’ve also approached the problem through INSAR and CIHR, because of Autism Speaks’ huge influence on both. Again, no answer.

    Mr Mitchell often makes claims about the characteristics, statements, and actions of others. Many of these claims are false. Virtually everything he’s written about me is false (he has this in common with Harold Doherty).

    Mr Mitchell has also taken the position (on the TMoB board) that Autism Speaks, as an autism research funding body, must abandon established scientific standards (e.g., a credible peer-review process) and instead make funding decisions according to political considerations (e.g., whether Mr Mitchell approves of various researchers).

  24. David N. Andrews M. Ed. (Distinction) December 26, 2008 at 09:55 #

    Dedj: “Jon – those excuses don’t wash. Other organisations mentioned by Kev, or similar to those mentioned by Kev, include people with the condition on the board out of a sense of ethical obligation, even if it’s a token appointment.”

    And, even in Finland (not the most advanced-thinking country on the bloody planet!), we have autistic people on the governing body of the autism association … and a number of autistic people have jobs within the organisation. The current regional secretary for South-East Finland has Asperger syndrome, as do the two main workers on the Empowerment Project.

    As for Autism Speaks’ displayed attitude on the matter of discrimination, none of gadfly’s arguments can hold up: the precedent for having autistic people on committees and holding posts in organisations relating to our disability issues is there, and Autism Speaks should be bloody-well following it. The fact that they are not suggests that they do not give a rat’s arse about what autistics actually have to say for ourselves.

Trackbacks/Pingbacks

  1. blog-thing : Autism Speaks and the United Nations - December 26, 2008

    […] organization (NGO) associated with the United Nations Department of Public Information (DPI). Both LeftBrainRightBrain and The New Republic have articles explaining why this is not a good thing for the autistic […]

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