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25 Responses to “Autism Speaks and the United Nations”

1. Comment by Harold L Doherty | December 27th, 2008

   “I think that the whole community is going to have to learn to live with some sort of pluralism in which many voices are heard and listened to. We are unlikely to achieve one voice except by force majeure and Autism Speaks seems to agree. It is using the wealth and power of its founders to impose their view as the voice of the autism community.”

   Nonsense.

   You assert that Autism Speaks is imposing its view. You do so because you are at odds with its promotion of research into causes and cures and because of some of the honest depictions of autism realities of Autism Speaks associated productions.

   These views are uncomfortable for you but they are entirely consistent with the views of many responsible parents around the globe seeking to help their children with autism spectrum disorders overcome serious, life restricting impairments through autism therapies, treatments and cures.

   Your name calling strategy will not persuade anyone who does not already share your “autism is beautiful” ideology. Your failed ideology and strategy are in fact attempts to do what you accuse of Autism Speaks of doing impose your views - on parents trying to help their autistic children.

2. Comment by Mike | December 27th, 2008

   Harold,

   Autism Speaks is clear about its achievements. This from the annual report 2007 by Mark Roithmayr, President of Autism Speaks:

   After having combined four autism organizations into one, it meant that we would now, for the first time
   ever, be moving forward as a unified autism community.

   Mark Roithmayr finishes his report by referring again to our founders’ belief in the strength of a unified autism community which will forge ahead in our efforts to find a cure for autism.

   Taken together with statements on the Autism speaks website such as:

   Autism Speaks aims to bring the autism community together as one strong voice.

   and it is hard to avoid the conclusion that Autism Speaks is seeking to impose its hegemony upon the autism community. It even refers to itself as the autism community. This “assertion” of mine has nothing at all to do with my opinion of Autism Speaks agenda and everything to do with the way they pursue that agenda.

   Regarding my own opinions it would be helpful if you could refer to what I have said rather what your own misrepresentation of my position.

   I have said I want a plurality of voices. You say I want to impose my own view.
   You say that I believe autism is beautiful. I have said on this blog that in my opinion autism is both a disorder and a disability.
   You accuse me of name calling. Do you have any examples in relation to my recent articles on Autism Speaks?

   Finally, regardless of my opinions of Autism Speaks, by seeking recognition from the United Nations as an NGO, it has expressed a commitment to the UN criteria that I referred to above and has placed itself open to scrutiny in that regard. I think there are inconsistencies between the the way Autism Speaks conducts itself and the criteria it has to satisfy as an NGO affiliated to the United Nations. What do you think?

3. Comment by CS | December 27th, 2008

   Ironic that Harold would claim that you are trying to impose your views. This from the man fearful of dissent on his own blog.

   “on parents trying to help their autistic children.” What parent doesn’t want to help their child. Is there only one way to help a child in Harold’s view? Harold sinks deeper everyday into the abyss of lunacy and madness. He is beginning to sound further and further like a fascist conspiracy theorist.

4. Comment by Mike | December 27th, 2008

   CS
   I do not agree that Harold is either insane or fascist. He just prefers to attack his own straw man version of neurodiversity rather than engage in a meaningful exchange of views.

5. Comment by jonathan | December 27th, 2008

   “you accuse me of name calling do you have any examples in my recent posts on autism speaks”

   Yes, Mike, I don’t know about Harold, but I do. You have accused them of “slick fundraising techniques” You have also stated that they engage in “dangerous Propaganda” rather ironic for a neurodiversity proponent.

   I think we have discussed the issue of dangerous propaganda in our previous exchange. However, what do you mean by “slick fundraising techniques” Is this not name calling? Are you implying that autism speaks engages in either illegal, unethical or somehow immoral activity to acquire money for the nobel cause of curing and preventing autism?

   Also, I am glad you attempted to ask them about the question of no autistic board members, I agree with you that it is a legitimate question that deserves a legitimate answer. I hope that they address this issue somehow at some point.

6. Comment by CS | December 27th, 2008

   Mike, by excluding voices that don’t echo his own views, Mr. Doherty is indeed engaging in a type of fascism.

7. Comment by Socrates | December 27th, 2008

   It’s difficult for me to see how at this time a consensus could be reached. Autism Speaks have clearly and consistently called for a ‘cure’ for autism. The fact that the overwhelming majority of people with high functioning autism, (that I have asked, anyway) don’t want to be cured, seems to have little influence on AS’s thinking.

   The fact that 80% of the spectrum is high functioning, is conveniently forgotten in their publicity material. It is this increase in diagnoses of HFA/AS that are fuelling it’s claims of an ‘epidemic’ - which is very much presented as an epidemic of low functioning autism.

   AS’s position is so deeply offensive to so many of us, it is difficult to see how a dialogue could be established. They clearly don’t want us as members of the board or as staff. Our place is to be ‘done unto’ with cloying, condescending magnanimity. We are the diseased, the disabled. So far gone as not to have an opinion worth listening to.

   ‘Force of Argument’ - unfortunately the unacknowledged BAP’s who I suspect, make up the majority of those actively campaigning for AS, are too emotionally involved with their own victimhood to be reasoned with. AS’s campaigns aren’t based on reasoned arguments and fairly presented facts. There are double-whipped schmaltz, drizzled with the tears of mothers and sprinkled with dodgy statistics.

   “force majeure” - well, that was Bob’s management technique that got him where he is today and I’ve know doubt that it will take AS a very long way indeed.

   Your idea that the NAS should aim for NGO status, seems to be the way forward. Perhaps as part of a European coalition of like-minded organisations?

   For us in the UK, the recent changes to the health and social care system, Direct Payments and Individual Budgets are a significant and potentially useful step along the path of self-determination. I think the NAS should be looking at what this will mean for us and how we can best take advantage of the opportunity.

   I would like to see the NAS supporting us to found and run our own social care and employment services. Or at least see an expansion of the Prospects Employment Agency and the NAS’s social care service provision.

8. Comment by Mike | December 27th, 2008

   Jon
   as you point out, we have already discussed what I mean by dangerous propaganda. Name calling in my book means resorting to insults rather than addressing the matter in question. I think you will agree that I always use supporting arguments to back up my statements. Regarding slick fund-raising techniques, by slick I mean professional and efficient. But their nationwide series of autism walks can make it difficult for local organizations to raise money. Here is an example from Vermont.

   Last year, Autism Speaks organized its first fundraising walk in Burlington, Vermont. The walk attracted more than 400 participants and raised nearly $35,000. By many accounts the event was a success, however some parents began to question why they were raising money for national research when local families in Vermont needed immediate assistance.

   As a result, one of last year’s community sponsors - a group called Autism Support Daily - decided to organize their own walk and call it the Second Annual Vermont Walk on Saturday, September 29th. Rather than give up the event they helped organize - Autism Speaks is fighting back by organizing their own walk on Sunday, September 30th at the same park!

   As a result of this dispute, it’s likely both groups will only raise a fraction of what was raised last year.

   Source - Don’t tell the donor.org

   In answer to your question, I am implying nothing. I believe Autism Speaks’ behaviour in Vermont was insensitive and a tactical error. It is better to work in partnership with local groups rather than antagaonize them.

9. Comment by alyric | December 27th, 2008

   When Harold doesn’t make a lot of sense, do recall that the man is supposed to be a lawyer, therefore it’s quite likely just another let’s attack neurodiversity gambit. It wouldn’t matter in the least what you wrote Mike. It could be ‘the cow jumped over the moon ‘ and Harold would find a way to get one of his stcok messages out. He’s as predictable as the sunrise. So don’t take him too seriously. The only place he gets a decent audience is on the Hub. No one can write on his blog, if they could find it because of the blanket censorship. I once asked him if he felt guilty about posting on the Hub given how he censors everyone else. Still waiting for an answer.

10. Comment by Mike | December 28th, 2008

    Harry,
    I do not expect a rapprochement between Autism Speaks and autistic adults any time soon. It may never happen. I do think that if we make reasonable requests for joint action over issues where we appear to have something in common, eg the UN Convention on the Rights of Persons with Disabilities, it will enable us to engage in dialogue with AS supporters whether or not the central organization responds. If AS does respond, together we may achieve something positive for autistic people. If AS does not respond, dialogue and joint activity with their supporters at the grass roots level may be just as productive.

    I agree with you totally about the NAS. Email me privately so we can coordinate our response.

11. Comment by Mike | December 28th, 2008

    Alyric,
    I take your point entirely. But there are many people who read this blog who do not comment. I respond to Harold mainly for their benefit. They can read both sides and decide for themselves.

12. Comment by Mike | December 28th, 2008

    CS
    I reserve the use of the term fascism for its original, political context. Unless Harold sends in the stormtroopers I prefer to characterize his behaviour on his blog as censorship, nothing more.

13. Comment by Adelaide Dupont | December 28th, 2008

    “At present I believe Autism Speaks is the only autism related NGO. But there is nothing to stop other organizations from applying. I will suggest this within the National Autistic Society. So long as you are a not for profit organization that can meet the criteria, you are free to apply.”

    This is not so. In 2002 (shortly after the World Autism Congress in Melbourne, and some months previous) the World Autism Organisation (Autisme-Europe) was lobbying, and they have been involved with the United Nations for at least the past six years. I am sure they have applied. They have most certainly been involved with the World Health Organisation. Also, the Charter of Human Rights within that organisation is very UN-oriented (and UNESCO/UNICEF, more specifically).

    And in 2004 - I mean since 2004 - Aspies for Freedom has been lobbying to have autists recognised as a minority group within the United Nations.

    These are examples of activities that organisations have done within this framework: before Autism Speaks.

    Socrates, your statement regarding: ‘Force of Argument’ - unfortunately the unacknowledged BAP’s who I suspect, make up the majority of those actively campaigning for AS, are too emotionally involved with their own victimhood to be reasoned with. AS’s campaigns aren’t based on reasoned arguments and fairly presented facts. There are double-whipped schmaltz, drizzled with the tears of mothers and sprinkled with dodgy statistics.

    I don’t know about (the people at Autism Speaks) ‘unacknowledged’, nor do I entirely agree that they are ‘too emotionally involved’ with their ‘victimhood’. If, as you state, 80% are high-functioning (BAP?) … I don’t know about this statistic either.

    And isn’t the National Autistic Society already a non-governmental organisation? Good ideas about direct actions that are achievable.

14. Comment by David Andrews M. Ed. (Distinction) | December 28th, 2008

    “When Harold doesn’t make a lot of sense, do recall that the man is supposed to be a lawyer, therefore it’s quite likely just another let’s attack neurodiversity gambit.”

    If it is such a gambit, and if it’s one calculated to inflame, then it would mean that HLD knows the likely effect of his behaviour and intends to get the responses he gets. In a court-room, such behaviour is forbidden (as every good lawyer knows); ‘badgering the witness’ too often in order to inflame and to put him/her off guard - in such a way that the witness gives a predictable but atypical aggressive/agitated response - could place a lawyer in contempt of court, since it jeoparises the fairness of a trial. The same actually applies outside of a court room, in that the rest of us have the right to hold him ‘in contempt’ since his obviously inflammatory remarks are calculated to get particular responses (responses which he can they try to cite as ‘name-calling’, et cetera).

    He seems ready to engage in this sort of behaviour at the drop of a hat: that suggests that he would do so in a courtroom, and that - as we know - would make him provider of a very poor-quality legal service (since his knowing that such behaviour would cause disruption to any proceedings means that he has little care regarding the effect of his behaviour in someone else’s matter). I wouldn’t hire that sort of lawyer, and - I suspect - neither would anyone else here (unless their foolishness was outstripped only by the size of their bank balance).

    “I once asked him if he felt guilty about posting on the Hub given how he censors everyone else. Still waiting for an answer.”

    I doubt that he knows how ‘guilty’ actually feels! I’ve seen no evidence that he would regret a single offensive thing he says/does to anyone here (or anywhere else). As Mike says: “He just prefers to attack his own straw man version of neurodiversity rather than engage in a meaningful exchange of views.” The building of a straw-man is - psychologically speaking - an attempt to rationalise his hatred and his extremely discourteous behaviour here in order to avoid having to feel guilty about it. As to why he’d ‘hate’ so much, it’s simple: most autistics present evidence that his claims about autism are false and demeaning. And this makes us a threat to his case.

15. Comment by Mike | December 28th, 2008

    Adelaide
    you are right about there being other NGOs and it is good to read that some of the.m have been involved wih the UN and the WHO. But Autism Speaks was the only NGO I could find listed on the UN website as an officially recognized NGO. But there were over three thousand names on the list so I could have missed some.

16. Comment by Capella | December 28th, 2008

    Personally I’d recommend contacting the other Disability related NGO’s that are listed under disability and informing them about Autism Speaks’s prescence and the situation it could potentially represent for them. I mean I wonder what intentions Autism Speaks has towards the convention of Disabled Rights for Persons With Disabilities?. So far it’s kept pretty quiet to be fair on either side so it could be idle waspish speculation on my part but nevertheless a bit of international “solidarity” or in the form of challenges from those groups might be helpful?

    As for AUTISME Europe it may have tried for recognition but apparently it doesn’t seem to meet the criteria for being a UN NGO. I had a good look but it doesn’t seem to be listed on the site.

17. Comment by CS | December 28th, 2008

    Mike, I know this is OT, but I feel the need to clarify this point. You wrote that you prefer the original context of fascism. Mussulini coined the term first and he wrote:

    “Anti-individualistic, the fascist conception of life stresses the importance of the State and accepts the individual only insofar as his interests coincide with those of the State, which stands for the conscience and the universal will of man as a historic entity…. The fascist conception of the State is all-embracing; outside of it no human or spiritual values can exist, much less have value…. Fascism is therefore opposed to that form of democracy which equates a nation to the majority, lowering it to the level of the largest number…. We are free to believe that this is the century of authority, a century tending to the ‘right’, a Fascist century. If the nineteenth century was the century of the individual (liberalism implies individualism) we are free to believe that this is the ‘collective’ century, and therefore the century of the State.”

    Columbia University Professor Robert Paxton defined fascist belief systems as:

    “..a sense of overwhelming crisis beyond reach of traditional solutions; 2. belief one’s group is the victim, justifying any action without legal or moral limits; 3. need for authority by a natural leader above the law, relying on the superiority of his instincts; 4. right of the chosen people to dominate others without legal or moral restraint; 5. fear of foreign `contamination.”

    I do believe that based on his own writings and beliefs coupled with an authoritarian like censorship of dissent falls into the original context quite nicely. While HD doesn’t fit all the criteria, he certainly fits a lot of it. I guess I’m name calling a bit out of a lack of fairness on his part by using others and not extending the same courtesy. He’s a hypocrite.

18. Comment by alyric | December 28th, 2008

    @Andrew

    Wow, I never knew the ins and outs of contemtible court proceedings, thanks.

    @Mike

    Interesting that Autisme Europe is not an associated UN NGO.

    However, though it would be positive and definitely the way forward to have the NAS apply, there is still the issue of an organisation with a pro eugenics agenda having been given UN status, even if in practice that doesn’t mean all that much. So, should there not be some protest about that?

19. Comment by laurentius-rex | December 28th, 2008

    You have given up haven’t you

    Autism speaks are the new inquisition, they are the enemy and just because the UN who sanction many outrages and fail to intervene in others because they are not a democratic or a representative organisation of anything recognise them so What?

    They allowed Arafat to bring his shooter to the debating chamber, they have allowed countless terrorist and dictators space so what is new?

    No let us who believein justice and truth campaign against the UN as well, they never succeeded in anything but destroying the hope of peace and prosperity in the word, because they were so consumed by power politics of the cold war.

20. Comment by David Andrews M. Ed. (Distinction) | December 28th, 2008

    @alyric…

    it’s David

    but yeh… i’m looking up on this sort of thing because i’m needing to understand court proceedings. i think i’m going to need to take my local social welfare office to court.

21. Comment by alyric | December 28th, 2008

    Well duh! How long have I known you? Sorry about that, don’t know what I was thinking:)

22. Comment by David Andrews M. Ed. (Distinction) | December 28th, 2008

    @alyric

    no worries i nearly called HLD Mr Bush!

    

23. Comment by Mike | December 28th, 2008

    Larry,
    I have not given up. Autism Speaks and the UN may both be flawed institutions. But they gather support from well meaning individuals who should be our friends. I am suggesting that we take Autism Speaks at their word and invite them to join us in campaigning for human rights for autistic people. This is a reasonable proposal that will find favour with many who support them. If Autism Speaks are hostile or unresponsive that may raise questions in the minds of some of their supporters and allow us the opportunity to get our message across to them. If Autism Speaks does respond positively we will be able to work alongside their supporters and use the opportunity to explain neurodiversity to a fresh audience. Surely you have not forgotten the tactic of the united front?

    While the UN is far from perfect as an organization of governments, with regard to NGOs there are expectations that Autism Speaks will conduct itself in accordance with the criteria it signed up to. I see no harm in drawing attention to these expectations and using them to put Autism Speaks on the spot.

    The harm would come if we truly believed that the UN was going to solve our problems with Autism Speaks by making them behave in more acceptable ways. That is clearly not going to happen.

24. Comment by laurentius-rex | December 31st, 2008

    Everyone knows that bombs speak louder than words, ask the Israelis, who is stopping them?

    Autism speaks are wandering eyeless in Gaza and the sooner sommat narsty lands on em the better.

    Seriously the UN has little respect amongst the disposessed of the world and it is an institution that will likely not survive into the next century that is for sure, the question of course is, will anything?

    The UN is an evil institution, the great beast if ever there was one, the world bank has caused more suffering than probably any institution in history, inquisition included.

    There is no room in this world for Autism speaks at all. We must defeat and discredit them utterly, every last one. That is my battle cry, futile thought it may seem, but at least I know this, the current economic crisis will grab them by the short and curlies

    Larry

25. Comment by laurentius-rex | January 1st, 2009

    BTW I commend to your attention fellow blogger the nominomialist http://nominalist.wordpress.com/2008/12/30/304/ not that I have been known to universally agree with him any more than I do with Michelle Dawson (or any one else for that matter)

    I wonder what it is like being autistic in Gaza, not very nice I suspect, if the Israeli incursions aren’t bad enough there is Hamas to deal with who I doubt are more autistic friendly

    This is a situation the UN should be dealing with, as indeed they should be dealing with Dafur, but what do they do? what do they do at all except consume vast amounts of money featherbedding there fat cat diplomats who know no law at all save for “do what thou wilt” and the devil take the hindmost.

    If 2008 stands for anything it should stand for the total reform of that utterly corrupt institution.

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