Bob Wright snubs autistic adults, the same group who live in poverty

23 Nov

The New York Post reported on Autism Speaks founder Bob Wright having a grumpy slap at adult autistic people who were protesting the fact that Autism Speaks still has no autistic representation on its Board.

Bob Wright had harsh words for protesters who tried to muck up the A-list benefit concert he put on at Carnegie Hall on behalf of autistic kids.

“The protesters are lucky,” said Wright. “They’re well off enough, healthy enough, to do it. I wish my grandson were able to join them.”

Wright runs Autism Speaks, which has raised over $200 million for research into a disorder that afflicts mainly children.

That didn’t stop a clutch of sign-carrying adult protesters from descending on Carnegie Hall Tuesday night, trying to disrupt a concert attended by Donald Trump, Howard Stern and Martha Stewart. Protesters complain that there’s not one autistic person on the board of the org, which produced an “offensive” ad suggesting that autism was a fate worse than death.

Wright, whose grandson cannot talk because of autism, said the disorder is exploding among young kids who can’t speak for themselves.

“This is serious business,” he said.

Note how the reporter states that the benefit was for autistic kids and further states that autism affects mainly children. This should give some insight into the silly one dimensional world that the Wrights, and by extension, Autism Speaks inhabit. Of course autism doesn’t affect mainly children. In fact, it would seem that the reverse is true.

I would like to suggest to Bobo that what is serious business is blindly misrepresenting autism either purposefully or (more likely) out of ignorance. I would also like to suggest that its about time Autism Speaks walked the walk and got aome autistic Board level members. I would further suggest that Bobo wakes up and smells the coffee. Young autistic kids definitely find it difficult to talk for themselves. Most kids of his grandsons age might find it difficult to form coherent opinions on high level concepts like the right to be who you are. In the meantime, having an autistic Board level member would be a step in the right direction. I’d happily accept Jake Crosby or Jon Mitchell. Two men who I vehemntly disagree with yet who’s opinion on autism I respect due to their diagnosis.

Maybe Bobo might take a look across the pond if his cheeks aren’t still smarting from the slapdown he got last time he came over here. Maybe the reality of life for autistic adults over here might cause him to get a bit of a reality check as to where his research priorities should lie. As he continues to steer Autism Speaks down the increasingly stupid looking anti-vaxx hypotheses,

A THIRD of Wales’ autism sufferers are unemployed and living in ‘poverty’ without benefits, a charity has said.

9,000 autistic adults are surviving (sort of) on handouts from friends and family. Not only are they subject to ignorance in job centres, they are not made aware of _how_ to make a claim:

She [Shirley Parsley] said: “It is scandalous, therefore, that thousands of people with this serious, lifelong and disabling condition are being consigned to poverty by a complex and counter-productive benefits system.”

This is the reality of life for autistic adults. Abandoned by a state system and also abandoned by Autism Speaks, an organisation focussed solely it seems on people of Bob Wright’s grandchilds age. Whilst Bobo complains about how autism is ‘exploding amongst kids who can’t talk for themselves’ (a factoid for which there’s no valid science), the adults he and his organisation turn their backs on are literally starving.

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71 Responses to “Bob Wright snubs autistic adults, the same group who live in poverty”

  1. storkdok November 23, 2009 at 14:44 #

    I have a few harsh words for Bob:

    First off, you conflate autistic adults with autistic children. What NT child could go and protest?

    Second, your daughter is supposed to be “curing” your grandson with the DAN! pseudoscience. AS supports the pseudoscience link. If there really was “mercury poisoning/toxins/whatever else they can throw in”, then your grandson should be improving. How’s that DAN! treatment working?

    Third, you have no right to speak for autistic adults if you doesn’t have them represented on AS. Your ostrich-like myopathic view of adult autistics is ludicrous. You don’t have a clue what their lives are like.

  2. Corina Becker November 23, 2009 at 15:14 #

    I don’t know how many autistic people up north on the other side of the pond here are living in poverty, but I know that I fall in that category.

    And indeed, Bob Wright does show his ignorance in not recognizing that just because an autistic individual is standing outside with a protest sign does not mean that they are “well off” or “healthy enough”.

    Any person, autistic or not, standing with a protest sign, means that the person feels passionate enough about something to take a stand. Doesn’t mean a thing about anything else about that person.

    I also agree, Bob shows his ignorance about autistic adults in general. “This is serious business”, of course it is; this is why we’re protesting Autism Speaks.

    I’m also musing over his wording, using “business”. Autism Speaks is supposed to be a non-profit fund-raising organization, is it not? So why is he calling it a business?

    I can tell you though, I’m half tempted to say that just getting autistic people on the Board-level positions isn’t enough anymore. I’m tempted to say that having the organization around in general is too much. But then, I recognize that I’m deeply insulted and angry at Autism Speaks, so much that it may be compromising my belief in forgiveness.

    But, I suppose we will see what the future has in store.

    Either way, I really wish that I had gone to the protest.

  3. Joseph November 23, 2009 at 15:18 #

    Let me get this straight. Bob Wright, who likely has an annual income that is at least 9 figures, is complaining about people who, in his imagination, are “lucky” and “well off.”

    What a complete douchebag.

  4. Stephanie Lynn Keil November 23, 2009 at 16:04 #

    I think a reason why so many high-functioning autistic adults are struggling is that because many of them weren’t even properly diagnosed until recently. Due to this many are left without proper services and were unable to receive early intervention.

    I think if we are ever able to identify ASDs in childhood and give them the proper skills and intervention to succeed as adults while they are still in school than this won’t be so much of a problem.

    But since there has been such an “epidemic” of autism, especially among adults since they finally are given the correct diagnosis, it is almost too late to fix the problem now.

    I think the next generation of those with high-functioning ASDs will be much better off because they are being identified earlier and earlier and so they will have had the proper training and skills to succeed unlike the current generation of adults with ASDs.

    So, in the end, I still think it is better to focus on children rather than the adults.

  5. Kate November 23, 2009 at 16:18 #

    Is Mr. Bob so myopic that he can’t understand that his child will eventually grow up and be one of those “lucky” adults. What an idiot!

  6. Joseph November 23, 2009 at 16:20 #

    I think a reason why so many high-functioning autistic adults are struggling is that because many of them weren’t even properly diagnosed until recently. Due to this many are left without proper services and were unable to receive early intervention.

    That’s plausible, but not necessarily true. I guess we’ll see in a generation, when most autistic adults in the first world have the “right” diagnosis, if they in fact have higher incomes, are employed more often, etc.

  7. Ivar TJ November 23, 2009 at 16:30 #

    I am unaware of scientific evidence supporting it, neither any that is contradicting it — but I know that several people consider older school systems around the world more friendly to high functioning autistic people, due to less confidence-annihilating group work and more systematic learning.

  8. Socrates November 23, 2009 at 16:34 #

    And literally starving is not hyperbole.

    I once sat in on a conversation where a high-functioning man was talking about the strange smell he gave off as his starving body began to consume his lean tissue to survive.

    I spoke to another guy in some east European hell-hole, whose neighbours were clearly working up to murdering the village ‘weirdo’ – we were all screaming get the f— out – maybe he did; maybe he didn’t. We certainly never heard from him again.

  9. Dedj November 23, 2009 at 16:37 #

    “Bob Wright, who likely has an annual income that is at least 9 figures, is complaining about people who, in his imagination, are “lucky” and “well off.”

    Indeed. The only parent with autism I can think of that could afford a $100 dollar ticket (and above) plus travel costs, plus hotel costs, plus additional expenses, plus a donation, is in a decently paid career where autistic tendancies are accepted if not expected.

    Perhaps Bob should have taken a look inside the concert hall if he wanted to see people who are ‘well off’ and ‘lucky’.

  10. Stephanie Lynn Keil November 23, 2009 at 17:22 #

    Of course, society is changing and adapting to the more technologically literate (as many HFA/AS people seem to be; it’s a stereotype, I know, but it seems to be true) so those with HFA/AS will only become MORE employable as their skills are needed.

    But of course, those with HFA/AS still need proper treatment and training. We have seen what can happen when they don’t receive proper treatment and training.

    I know that a few people with HFA/AS are successful without early intervention and treatment but from what I have seen the majority are not. They could’ve had the success they had now in their 20’s rather than in their 40’s/50’s if they had the appropriate treatment and intervention that wasn’t available then but that is available now.

  11. Lauren D. M. November 23, 2009 at 18:18 #

    Silly question – when they say “cannot speak” do they include among these numbers the few known cases where teaching essentially mute autistic kids sign languages had worked (and it in fact seems to tend to be successful)? Because I’ve always kinda been fascinated by there being another group of people whose voice ended up being their hands for another reason (and I think it’s awesome – but trust a deaf girl to think that).

    On the article, wow, wealthy socialites who call other people well off? Assholes much?

  12. Ivar TJ November 23, 2009 at 18:56 #

    I do not find it self-evident that something termed “early intervention” is going to increase the likelyhood of success of autistic individuals in adulthood.

    Ivar TJ

  13. betsbetsbets November 23, 2009 at 21:45 #

    Sounds like ASAN et al are getting under Bob’s thin skin.

  14. Socrates (deceased) November 23, 2009 at 21:54 #

    yeah, they certainly are – there’s been ‘some discussions’ involving their pr people, lawyers and a few assorted worthies – that’s how they came up with the I. deny legitimacy (ie you’re not really autistic) and II. smear (ie. claims that ASAN were trying to disrupt).

    Crude and outdated propaganda techniques from some supposedly media-savvy East-Coast Names, just aren’t going to hack it any more in this hyper-connected world.

  15. betsbetsbets November 23, 2009 at 22:01 #

    Socrates: yeah, they certainly are – there’s been ‘some discussions’ involving their pr people, lawyers and a few assorted worthies – that’s how they came up with the I. deny legitimacy (ie you’re not really autistic) and II. smear (ie. claims that ASAN were trying to disrupt).

    Don’t forget III, which apparently is play the sympathy card by invoking his grandson’s condition (he’s worse off than YOU, protesters!), and IV: this is SERIOUS BUSINESS ASAN (which to Bob must be the autistic analog of Project Chanology).

  16. Billy November 24, 2009 at 06:53 #

    “Is Mr. Bob so myopic that he can’t understand that his child will eventually grow up and be one of those “lucky” adults. What an idiot”
    Kate, prove that he will get to be one of the lucky ones.

    “Let me get this straight. Bob Wright, who likely has an annual income that is at least 9 figures, is complaining about people who, in his imagination, are “lucky” and “well off.””
    Joseph, there’s a difference between being economically well off and functionally well off.

  17. Clay November 24, 2009 at 08:48 #

    At what point does “intervention” become “interference”? Speaking as a “free-range Aspie”, I think I’m really glad that there was no Dx to be had when I was in school. Parents, relatives, teachers, everyone discussing one’s “progress”, always keeping an eye out for “behaviors” and being “pro-active” and all that bureaucratic BS. I was left to be myself – ignored, neglected, but free to be me.

    Oh, and just to stay on topic, Bob and Suzanne Wright don’t have a clue, they just love to be seen as “philanthropists”. Bite it, Bob, we’ll make you talk to us yet.

  18. Kate November 24, 2009 at 15:16 #

    @Billy

    My quote of :lucky: was an indication of sarcasm (and I believe Joseph was indicating sarcasm also with his quotes). I sometimes forget that sarcasm needs to be indicated on the internet – sorry.

    Anyway, I certainly can’t prove luckiness and as the Mom of 17yo, my observations and my son’s experiences are the opposite of luckiness.

  19. Trishinspace November 24, 2009 at 16:23 #

    Hmm well I guess I don’t know very much about Bob Wright’s grandson. I had no idea he didn’t have use of his arms and legs and that he was dealing with some illness. I thought he was only autistic. (for those of you who don’t know me, sarcasm is my second language)
    I wonder how his grandson will feel in 10 yrs and if he would indeed be out there in protest of his grandparents use of him to scam millions of dollars out of uninformed people. Lets hope he grows up to be very different from them…with morals! It breaks my heart thinking about all of the people who could have been helped with the money that has been donated to AS.

    It really makes me sick that he thinks it’s ok to treat other human beings this way. I look forward to the day when my children will show the world what it’s like to grow up in an environment that feeds into their autistic processing and lets them flourish in a natural autistic way as opposed to those who are being told that they are diseased, sick and defective.
    Let’s keep our voices out there because one day we will have the platform to reach the masses and orgs like AS will be brushed aside and ridiculed. Please spread the word that there are orgs that are actually going to do even more to support and financially help autistic people such as aacfinc.org and very soon autismwomensnetwork.org and i don’t want to forget to say a big THANK YOU!!! to ASAN and all of the great work they’ve been doing!
    Love to all,
    Trish 🙂

    P.S. Hey Corina, i’m so in the same boat and yeah being poor really sucks 😦

  20. Stephanie Lynn Keil November 24, 2009 at 23:34 #

    “I do not find it self-evident that something termed “early intervention” is going to increase the likelyhood of success of autistic individuals in adulthood.”

    Ivar, I am speaking as a person with a diagnosis of Autistic Disorder, not Asperger’s, so perhaps there is a difference.

    I was not privileged enough to receive early intervention and by 11 I was in an institution. Now, as an adult, I live off SSI, can’t hold a job, have no friends, live in isolation, etc.

    If I had been privileged enough to receive early intervention, institutionalization in my youth could’ve probably been avoided. I was almost sent to a group home at an adult but instead went to live with my father instead, thank God.

    So, I do not advocate for “no intervention,” at least for the more severe. Perhaps the very high-functioning, such as yourself, are fine WITHOUT early intervention, as we can see, but many are not.

    Don’t generalize across the spectrum. What is okay for you might not be okay for someone with a more severe diagnosis of an ASD.

    I believe that Kevin Leitch’s daughter is severely autistic and nonverbal (correct me if I am wrong). Do you expect me to believe that it is best to leave her without ANY intervention? I don’t believe so.

  21. Clay November 25, 2009 at 00:05 #

    @Stephanie – I understand what you’re saying, and don’t disagree with it, but I still have a problem with the word “intervention”. The connotation to me is “taking over”, and if those who do the interventions call it that, it seems they’re giving themselves license to take over. No doubt, various kinds of “assistance” are needed, and I would have no objection to the use of “cognitive assistance” or some other qualifier used. I’m just saying let’s not confuse it with a drug or alcoholic intervention, where everyone you’re associated with criticizes, digs into your shit, makes ultimatums, and such. Because of the close association of the word in this sense, it shouldn’t be used in relation to education.

  22. Stephanie Lynn Keil November 25, 2009 at 00:30 #

    @Clay – So, perhaps “education/educate” would be a better word? I don’t like the word “assistance” because that implies helping a person temporarily rather than teaching a person and having them learn on their own. The word “assistance” implies that once that “assistance” is taken away than the person will not be able to use their skills outside of said context. So, I prefer the word “education.”

  23. Clay November 25, 2009 at 00:48 #

    @Stephanie – I’d go along with that, anything is better than the term “intervention”. Now, if we could just get everybody else to go along…

  24. Billy November 25, 2009 at 01:05 #

    Kate, that was no sarcasm. Don’t pretend I don’t get what those statements implied.

    “Lets hope he grows up to be very different from them…with morals!”
    Trish, what morals are you talking of? Who cares about your oppressive, societally-dominant “morals”?
    “It breaks my heart thinking about all of the people who could have been helped with the money that has been donated to AS.” There’s other helpful things to be done with the money besides plain charity.

    “On the article, wow, wealthy socialites who call other people well off? Assholes much?” Lauren, you have a point, but one should recognize in that, a distinction between economic and functional well being, and that it’s a burden to lack either of the two for those who lack it.

  25. Joseph November 25, 2009 at 01:43 #

    Lauren, you have a point, but one should recognize in that, a distinction between economic and functional well being, and that it’s a burden to lack either of the two for those who lack it.

    I’m pretty sure the wealthy socialites have both economic and functional well being, for the most part.

  26. Joseph November 25, 2009 at 01:53 #

    I was not privileged enough to receive early intervention and by 11 I was in an institution.

    @Stephanie: It’s kind of a leap to link the two circumstances, in my view. In fact, I would suggest you got institutionalized because someone decided you should be. Today, you’d be unlikely to be institutionalized, not because interventions are more prevalent, but because the institutionalization of children is rare. This is a cultural trend, probably brought about by the deinstitutionalization movement.

    Institutionalization is just a terrible idea. It’s interesting to read Kanner’s findings on this. No other researcher has ever looked into the institutionalization of autistics, as far as I’m aware.

  27. Clay November 25, 2009 at 01:54 #

    @Billy (Lurker) – Really, you’ve proven to us many times that you have no sense. There’s really nothing we (or anyone) can do about it.

  28. Stephanie Lynn Keil November 25, 2009 at 02:31 #

    “It’s kind of a leap to link the two circumstances, in my view. In fact, I would suggest you got institutionalized because someone decided you should be.”

    No, it isn’t a leap. I was institutionalized BECAUSE of my SEVERE behavioral problems that could not be controlled at home: severe self-injury, running away, etc.

    “Today, you’d be unlikely to be institutionalized, not because interventions are more prevalent, but because the institutionalization of children is rare. This is a cultural trend, probably brought about by the deinstitutionalization movement.”

    I’m only 21, so I was sent to an institution only 10 years ago; I was sent to live with my father at 18, only 3 years ago. It still happens and it isn’t as rare as you think it is. Believe me…

  29. Billy November 25, 2009 at 07:50 #

    Clay, do you have anything to say to refute me, that doesn’t just come from you being a miserable man for all the reasons that you are?

  30. Clay November 25, 2009 at 08:43 #

    Lurker, didn’t you hear? I’m happily retired, with everything I need and no worries. You’re the miserable one, claiming you’re so mentally impaired you can’t even make yourself a sandwich. You’ve admitted you’re not autistic, you’re just “mentally incompetent” for some reason you haven’t bothered to specify. I’ll agree with you that you’re a burden, mostly on your Mama. You’re right, boy, you’re entirely lacking. If you don’t change your attitude, you’re gonna grow up to be just like Mitchell. 😉

  31. Kate November 25, 2009 at 14:37 #

    @billy

    Say what?

    I was referring to my comment as sarcastic. Bob Wright’s statements of lucky and well off autistic adults was a 747 size example of cluelessness.

    Gaah! The internetzs!

  32. Joseph November 25, 2009 at 15:48 #

    Institutionalization of developmentally disabled children is rare. As of 2007, 95.75% of developmentally disabled children ages 10-13 registered with California DDS live at home. Only 0.51% live in institutional care facilities. 3.38% live in community care facilities.

    Meanwhile, 11.01% of developmentally disabled children the same age are classified as having “severe behaviors.”

    Not even John Best or Harold Doherty have institutionalized their kids yet. These are guys who do believe autistic people belong in institutions.

    I don’t mean to be disrespectful with this information, but I think it needs to be pointed out that it’s not the case that autistic children with “severe behaviors” must be placed in institutions.

  33. Billy November 25, 2009 at 20:12 #

    Clay, from looking at what you write of yourself, I think it’s clear you aren’t happy with and are still regretful of your past. I don’t know why else you would complain about specific issues that have no bearing on you as if certain viewpoints could cause problems for you. I may only know that I’m mentally incompetent, but it’s not like those on your side are determined to limit their crusade to autism only. And I perceive that I’ve been involved, considering that a psychologist and a psychiatrist that I’ve been to hinted that I have Aspergers, and that some of that confusion over what condition I have, could be due to the hype about so many people supposedly having autistic traits. I know who I’m a burden on. I’m eager for the day when I can move away from my family, if that ever could possibly happen. I don’t want to change my attitude. That won’t help me.

    Kate, there is a considerable amount of well off autistic adults, who are the ones who can communicate sufficiently, who have amazing academic achievements, and consequently prominent jobs, who are also basically the only ones who demonize cure for anyone on the spectrum.

  34. Socrates (deceased) November 25, 2009 at 21:32 #

    Billy,

    Being able to communicate fluently on the internet is not a predictor of independent living skills nor very much else.

    Your mind is too closed to see the truth, but the truth is many of us have significant and serious disabilities – and yet we still manage to achieve a far greater optimism about life than you.

    And you also fail to understand that Neurodiversity is very much about valuing and respecting the lives of severely affected people and advocating on their behalf.

  35. Billy November 25, 2009 at 21:49 #

    Socrates, those who communicate fluently on the internet are very likely to also be able to communicate outside of it too. But, it is known already that many of the aspies/HFAs communicate sufficiently outside of here. It is well known that the aspies involved in this have independent living skills which they admit to, albeit nonchalantly. What significant disabilities do you have? Nobody needs a bunch of false optimism and to wait a lifetime on a promise that will never come through.

    ND has shown immense disrespect through their trivialization of the impairments that many disabled have, and through their retaliation against those on the spectrum who went against ND’s agenda. The severely affected don’t need you to hold their hands and tell them how valued they are by you with your corny attitude. When did the severely disabled ones ever give you the consent to advocate on their behalf?

  36. Stephanie Lynn Keil November 25, 2009 at 22:27 #

    “those who communicate fluently on the internet are very likely to also be able to communicate outside of it too.”

    Speaking for myself only I have found that this isn’t true. The only time I actually communicate with people IS on the internet, except with my father, which isn’t very often. I am pretty active on the internet but that is because I am so unactive off. I literally have no life outside of the internet, at the moment anyway.

    I wonder if this holds true for many others who are very active on the internet? It seems to me, although this obviously isn’t a fact, that the MORE active you are on the internet the LESS active you are in real life.

    It’s hard to be active in “real” life when your “real” life IS the internet.

  37. Socrates (deceased) November 25, 2009 at 22:35 #

    “those who communicate fluently on the internet are very likely to also be able to communicate outside of it too”

    This is simply not true – the sensory/social overload of real-life interaction can often render people unable to express themselves.

    “It is well known that the aspies involved in this have independent living skills which they admit to, albeit nonchalantly.”

    Independent living skills often don’t amount to more than being able to go to the supermarket irregularly. Managing money/budgeting and housekeeping are often beyond the abilities of every very intelligent HFA’s.

    From the NAS’ I exist Report:

    “”61% of adults with autism rely on their families forfinancial support,
    over 40% live at home with their parents
    only 15% are in full-time employment.
    Three quarters of adults with autism either do not have any friends or find it hard or very hard to make friends
    56% have been bullied or harassed as adults”

    It is well evidenced that the Facts are contrary to your understanding of them.

    By the way, would you (assuming you’re White, describe black people as Niggers in a conversation with them?) So what gives you the right to describe me using the diminutive of a pathological condition? You speak of trivialization and retaliation. Try shouting Nigger in the Bronx and learn the meaning of retaliation for trivialization.

    My significant disabilities are well documented and not up for discussion.

    I’m not waiting on any promises. My optimism is mature and nuanced.

    ND has consistently put the needs of severely disabled people high on its agenda. Many involved, eg. Kevin Leitch and Kent Adams have LFA children.

    I don’t need to be granted a right to advocate for vulnerable people in society. I have a Duty to do so.

    Please if you wish to continue this discussion, reference your arguments with at least a semblance of fact and understanding of the reality of life outside your bedroom.

  38. Dedj November 25, 2009 at 23:12 #

    “ND has consistently put the needs of severely disabled people high on its agenda. Many involved, eg. Kevin Leitch and Kent Adams have LFA children.”

    Indeed.

    Many of us ‘ND’s are or have been professionally of vocationally involved in autism services, as Billy as been informed of before.

    One prominent member is/was a top level member of a national autism charity. Another is a lecturer in autism studies. Yet more are paid autism researchers. Others work or volunteer with people with autism. Many are parents of ‘classically’ autistic children and young adults.

    Some diagnosed with Aspergers have additional physical and neurological conditions. Some have painful arthritis, stomach complaints, Lupus, fibro and allergies. Some need to use wheelchairs and need help with toileting. Some have no special skills at all, and face a life of repeated unemployment and bullying.

    ND people, in general, appear to have an understanding that people with autism face impairments from the interaction between thier autistic traits and the socio-cultural environment. This has included clients that are classically autistic and unable to function without assistance. This isn’t a novel idea in autism or SpLD services, which Billy would know had he bothered to check when he was told to.

    On the contrary, many pro-cure people reduce the problems faced by people with autism to being direct results of autistic characteristics. If anyone is triviallising the problems faced by people with autism, it’s clearly the people who focus only on autistic characteristics as being the problem, and who don’t look at the broader picture of what and why there is even a problem.

    My god, it’s like the last 4 decades of disability politics didn’t happen.

    Personally, I’m professionally obligated to advocate for any socially disadvantaged group.

    This has all been pointed out to Billy before. The best we’ve got back from him is “I don’t think so”. Everyone knows how shite Billy is at backing up his statements, except him.

    Billy should demonstrate that he actually believes himself to be mentally incompetant (he clearly doesn’t when he gladly dismisses entire professions, ways of thinking, academic and clinical models and what have you with nary a thought to the idea that he might not have the mental capacity to understand the argument) and consider butting out of the discussion.

    He’s wasted too much time in this thread already.

  39. Billy November 26, 2009 at 00:22 #

    If someone has sufficient verbal and interactional skills as demonstrated through typing/writing, why would they have trouble with such communication through speaking? That doesn’t include consideration of body language or sensory overload, but even though there is no guarantee that one who can communicate online can do so face to face, there has to be some correlation. The opposite isn’t ever true. I know it can be easier to communicate online than on the outside, but if there is no impairment in any aspect of online communication, it doesn’t seem likely that such a person would have much of a face to face impairment in communication. There are social aspects to communicating online.

    But this is besides the point. The aspies/HFAs appearing outside protesting Autism Speaks with chants, going to conferences etc., promoting their agenda to various individuals, showing no impairments in communication, prove that ND has many who can communicate sufficiently.

    “Independent living skills often don’t amount to more than being able to go to the supermarket irregularly. Managing money/budgeting and housekeeping are often beyond the abilities of every very intelligent HFA’s.” That is not true. They are capable of shopping at the supermarket, running errands, driving, and getting jobs. That is not an insignificant amount of independent living skills. Not managing money and budgeting are not beyond their abilities, nor are they beyond the abilities of the many other individuals and institutions who aren’t prone to budgeting well.

    “It is well evidenced that the Facts are contrary to your understanding of them.” Those in ND tend not to fall into those unfortunate percentages, but into the percentages with the fortunate circumstances.
    “So what gives you the right to describe me using the diminutive of a pathological condition? You speak of trivialization and retaliation. Try shouting Nigger in the Bronx and learn the meaning of retaliation for trivialization.” I don’t know what diminutiive you’re referring to. Who is trying to talk about you? You aren’t black, and your situation has no meaningful comparison to that of a racial minority. Why don’t you talk about your racial analogy in the Bronx and see some consequences for your daft trivializations.

    If your disabilities aren’t up for dicsuccion, then they’re not up for acknowledgment here. The issues being debated are too serious, so all should put their cards on the table about conflicts of interest. It is your right not to discuss your disabilities, but you shouldn’t talk of these issues as they pertain to you personally if you won’t reveal your circumstances.
    “I’m not waiting on any promises. My optimism is mature and nuanced.” It’s not about you. I’m talking about the ones who are highly disabled on the spectrum. ND has a questionable way of defining the needs of the severely disabled. Kent Adams isn’t even very happy with the way some in ND are doing things these days. I think you obviously think you have a right to “advocate” for the vulnearable ones, who are also vulnerable to being subjected to control by those on your side.

  40. Stephanie Lynn Keil November 26, 2009 at 00:31 #

    “If someone has sufficient verbal and interactional skills as demonstrated through typing/writing, why would they have trouble with such communication through speaking?”

    I wonder how much you actually know about autism.

    “But this is besides the point. The aspies/HFAs appearing outside protesting Autism Speaks with chants, going to conferences etc., promoting their agenda to various individuals, showing no impairments in communication, prove that ND has many who can communicate sufficiently.”

    I do none of this. But, then again, I’m not exactly “Pro-ND” either. I have found that they DO have a tendency to focus on “Shiny Aspies” and ignore the more severely disabled.

    I’m not LFA but I receive SSI, can’t hold a job, have no friends, spent time in institutions, etc. so I’m definitely not as high-functioning as most of the others.

  41. Socrates (deceased) November 26, 2009 at 00:33 #

    Billy,

    I say this not in anger – just a statement of fact:

    You are talking shit.

    Through ignorance and some fairly complex psychological stuff.

    I’m sorry but the level of your engagement is just not sufficiently informed nor logical to continue this discussion.

  42. Socrates (deceased) November 26, 2009 at 00:38 #

    Stephanie Lynn Keil,

    Most of us activists in the UK have a similar level of disability as you, and it is on the whole more significant than many of the most visible advocates – but it obviously will be… We’re stuck at home having fits and often being too scared to leave the house…

  43. Billy November 26, 2009 at 01:07 #

    “Many of us ‘ND’s are or have been professionally of vocationally involved in autism services” Dedj, I’d like to know how many of them. I wonder what such services those ND bloggers who stopped blogging/advocating, are working on. To make up for the awful circumstances many on the spectrum will remain in if ND gets their way, the advocates should all be highly involved with services. I’d like to see how they will fit that into their busy lives, which are already scheduled with indulging in things that please them.
    “Another is a lecturer in autism studies.” What does that matter to the ones suffering in institutions and semi-institutions?
    “Some diagnosed with Aspergers have additional physical and neurological conditions. Some have painful arthritis, stomach complaints, Lupus, fibro and allergies. Some need to use wheelchairs and need help with toileting. Some have no special skills at all, and face a life of repeated unemployment and bullying.” Additional conditions aren’t the topic of discussion. Whoever said that all with aspergers are as fortnuate as the ND ones? I really don’t know what percentage of those with aspergers are as fortunate as the ND ones, but I know that the ones leading ND are very fortunate. The ones standing outside protesting Autism Speaks aren’t suffering from any physical condtions.
    “people with autism face impairments from the interaction between thier autistic traits and the socio-cultural environment” That makes no sense.
    “This isn’t a novel idea in autism or SpLD services, which Billy would know had he bothered to check when he was told to.” I don’t care that it’s a novel idea among your so called professionals, who haven’t done anything groundbreaking to help those who need it, unless it’s proven.
    “My god, it’s like the last 4 decades of disability politics didn’t happen.” It hasn’t proven any of your fantasies.
    “I’m professionally obligated to advocate for any socially disadvantaged group.” Mission statement kind of talk doesn’t convince me of any benevolent intentions.
    “The best we’ve got back from him is “I don’t think so” As if absolute certainty of everything that someone blurts out is so great and practical.

    “Billy should demonstrate that he actually believes himself to be mentally incompetant (he clearly doesn’t when he gladly dismisses entire professions, ways of thinking, academic and clinical models and what have you with nary a thought to the idea that he might not have the mental capacity to understand the argument) and consider butting out of the discussion.” Entire professions and their opinions aren’t infallible. Ways of thinking are subjective. Unsuccessful academic and miserably unsuccessful clinical models, are vulnerable to being questioned and ought be questioned. I wonder what you think those who are mentally incompetent should think and say of those things, since you don’t think they should question them, even if they can be repudiated by anyone with common sense.

  44. Dedj November 26, 2009 at 01:20 #

    “I have found that they DO have a tendency to focus on “Shiny Aspies” and ignore the more severely disabled.”

    Again, those of us who are actual members of the online and offline movement repeatedly run into fellow members who are either employed or volunteer to provide education to, provide assistance to, provide therapies and interventions to or otherwise help the ‘more severely disabled’. This does not include those that came into ND by way of study or research into autism, or people who have children or other dependants with severe autism.

    Even the supposedly higher functioning people can sometimes have multiple disabilities. Wheelchairs, walking aids, vision aids, hearing devices, AAC’s and the like are not uncommon amongst ND groups, which can cause problems for those with hyperacusis or sensory sensitivities.

    As I’ve said before, a very large reason for why you see ‘shiny aspies’ all over the bloggosphere is because they are typically the ones that have the function to blog. It should be no suprise to find out that personal blogs written by people with autism are therefore ‘shiny aspie’ blogs’.

  45. Billy November 26, 2009 at 01:32 #

    Stephanie, I didn’t mean that there weren’t a lot of exceptions where some who can interact on the internet sufficiently couldn’t speak sufficiently. I didn’t say you were as high functioning as them.

  46. Stephanie Lynn Keil November 26, 2009 at 01:33 #

    ““I have found that they DO have a tendency to focus on “Shiny Aspies” and ignore the more severely disabled.””

    ASAN is more interested in preventing Shiny Aspies from being aborted, even though that is not anywhere in the near future, than saving those with Autistic Disorder in institutions (e.g. JRC and state institutions) from severe psychological and perhaps even physical and sexual damage in the present that will leave them scarred for a lifetime (as in, they will be “permanently scarred.”)

  47. Dedj November 26, 2009 at 02:09 #

    “Dedj, I’d like to know how many of them.”

    More than I have contact with. There’s no realistic way you could audit them, given that ‘ND’ is an attitude towards people with neurodiverse conditions, not an organisation.

    Personally speaking, the ND people on my Facebook friends list are ND autism academics or researchers, some are health care professionals or service providers that deal with people with autism. The rest are people with autism or aspergers.

    “I wonder what such services those ND bloggers who stopped blogging/advocating, are working on.”

    I didn’t say ND bloggers. Some assertively ND people do not blog out of choice, some do not blog due to lack of interest, and others cannot cope with blogging. That you only focus on bloggers is a clear sign that it’s all you’re aware of.

    Again, ND people have been involved in: assisting the government in setting thier central technical definition of autism, providing and advocating for the provision of occupational, dietary, music, speech and language, physio and psychological therapies. Provision of and advocating for autism education. Advocation for services for people with autism at the national level, including assistive devices and assistive communication devices.

    Thats just the people I ran into at one conference last year. I’m sure you can now understand why your question is unanswerable due to it’s overbroad nature.

    You could have easily found out a lot of this for yourself.

    “…. the advocates should all be highly involved with services.”

    Why? Some of them have their own lifes you know. Some of the ones I know have difficulty holding down jobs or maintaining personal hygiene, much less putting in extra time.

    “What does that matter to the ones suffering in institutions and semi-institutions?”

    What does that have to do with this discussion? We were talking about awareness amongst ND people about people with autism. Being employed to teach other people about autism at the Bachelors (and Masters) level is a pretty good sign of adequate knowledge.

    “Additional conditions aren’t the topic of discussion.”

    No, but we are talking about levels of function remember? You don’t get to change the topic just becuase you don’t like an answer. ND people can be, and some are, what would be colliquially termed ‘severely disabled’.

    “but I know that the ones leading ND are very fortunate.”

    Well duh! The nature of advocacy means that successful advocates are the one that have enough of the functional skills needed to be paid attention to. Those that don’t have the skills will not be receiving much attention for their advocacy, even if they are given a sufficient platform.

    ND advocates who don’t possess these functional skill are obviously not going to be within your limited sphere of recognition. This is your fault. You should not

    “The ones standing outside protesting Autism Speaks aren’t suffering from any physical condtions”

    You don’t know this. Indeed, cannot know this from the little video evidence presented thus far.

    ““people with autism face impairments from the interaction between thier autistic traits and the socio-cultural environment” That makes no sense.”

    Fuck, you’ve been told about the social model often enough.

    “I don’t care that it’s a novel idea among your so called professionals, who haven’t done anything groundbreaking to help those who need it, unless it’s proven.”

    Now this really doesn’t make sense. First, it’s not up to you to determine what is an isn’t a profession. Professions have legal status as such, and are determined according to well argued criteria.

    Secondly, your second assertion is pure nonsense. There are mulitple efficacious therapies than can, and are provided to people with autism.

    “It hasn’t proven any of your fantasies.”

    Didn’t say it did. I was referencing your lack of understanding of the wider social issues.

    “Mission statement kind of talk doesn’t convince me of any benevolent intentions.”

    It’s not supposed to. And, again, your opinion is irrelevant in this case.

    “As if absolute certainty of everything that someone blurts out is so great and practical.”

    Yet, this is your tactic. I cannot recall a single discussion anyone has had with you where you have provided a single scrap of evidence, or a single reference that actually said what you claimed it did, if you have even provided any at all.

    “Entire professions and their opinions aren’t infallible.”

    No, but in comparision to a loner sitting in his mums attic somewhere, presenting nothing more than “I don’t think so”, it’s like comparing the skills of a fully trained tank driver to a six year old that ocassionally plays with his action men.

    “Unsuccessful academic and miserably unsuccessful clinical models, are vulnerable to being questioned and ought be questioned.”

    The social model is certainly not unsuccesful. As I informed you last time we ‘tussled’, several Trusts (regional medical and health care providers) have adopted the social model. It is taught in freshman professional context, and is often present throughout individual services and departments.

    As for the laughable claim that the adaptive frame of reference and the compensatory frame of reference are ‘misarably unsuccesful’………you woefully ignorant prick.

    The industries that are based around those models are ubiquitous. You can pick up adaptive equipment anywhere. Even supermarket chains sell such equipment.

    You are clearly basing everything you say on your woefully inadequate personal experience. You make laughably incompetant and poorly educated claims, that don’t even have the redeeming value of being made tentatively. You are clearly making claim about things you have not bothered to have a basic education in.

    Despite constantly reffering to yourself as ‘mentally incompetant’ you clearly believe your opinions are right just because they are yours. Your ego clearly will not tolerate being wrong about anything except those things you want to be wrong about. Aspergers? No, if I was you, I’d ask your (alledgedly useless) psych team what else they had in mind. I would not be suprised if they suggested schizotypal or schizoid personality disorder.

    The worst thing about all this is that your half of this entire conversation has proceeded exactly how it always does.

    You haven’t bothered to lift a finger to learn anything, and that’s the saddest thing of all.

    You have been given far too many chances. You will get no more. Get learning or get fucked.

  48. Susan November 26, 2009 at 21:22 #

    I really wish the adults got MORE attention. My son has classic autism and the first thing I did when I started researched was to seek out the adults to see what they say about it; not how I could “fix” him since he’s never been broken. Even the “low” functioning have a voice online. They need you guys on the boards of these charities. Too many of us get caught up in trying to save our babies and forget about respecting them at the same time.

    Clay I agree with you about the term intervention. We’ve always referred to it as therapy and told him he just needs some extra help learning some things but he has a super easy time with other things. We NEVER want him to feel less of a person because his brain is wired differently.

    The other problem I’ve got with autism speaks is that they push such a doom and gloom scenario that unless you’ve got a really severe case on your hands it’s easy to miss. Our son didn’t get diagnosed until he was five because he has eye contact, he has language (although it was non-functional), and he is very loving. There was no way he matched up to the nighmare scenarios they put out there; yet when he was five he had the social skills of an 18 month old, almost no receptive language, and his expressive language was purely scripting and echolalia. Even now when I look at their stupid information campaigns he doesn’t fit. Not only are they completely excluding the adult community, but they are also out of touch with a large portion of the children they claim to represent.

  49. Patrick November 27, 2009 at 17:07 #

    Typing doesn’t even have the challenging aspects of face to face or in person communication, Billy. How ignorant.

    Here, (typing, and not very well, either) I can take the time to find the words to put on the screen, fairly at leisure, compared to hunting for a missing word while speaking to a person face to face and having a series of 5 to 10 second pauses while I find the right word(s).

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