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.
Left Brain Right Brain 
“Typing doesn’t even have the challenging aspects of face to face or in person communication, Billy.”
Indeed. If Billy knew enough to be able to perfrom sufficient and competant task analysis on the situations he claims are equatable, he’d know how and why they’re not equatable. Communication on the internet is widely known as being much more autism friendly than face to face commuication. This may be why Billy slyly changed arguements failry radically halfway through. Everyone spotted the bait and switch, but he’ll never admit to it.
It’s a complicated situation trying to have a discussion with someone who is absolutely sure of thier arguement, yet who clearly doesn’t have the competancy (by thier own admission too!) to proficiently assess the legitmacy of thier own arguement.
Patrick, I know it doesn’t have those same challenging aspects. I know what you mean regarding the timing considerations. I was basically thinking of online communication as it can include doing chat rooms and instant messaging among other things. I myself experience the relative ease of communication through the internet.
Dedj, I didn’t change the argument, but I clarified it. When I said likely, I didn’t mean everyone or a 1 to 1 correlation. I shouldn’t even have responded to Socrates’ mentioning of that premise which I don’t attribute to how I know someone has independent living skills.
“I was basically thinking of online communication as it can include doing chat rooms and instant messaging among other things.”
I don’t do these things, either (IM or chatrooms). I find “real-time” communication difficult. I’m fine with e-mail or in settings such as this because it isn’t in real-time: there can be large gaps between responses.
@everyone
Thanks. This discussion has meant a lot to me.
@Billy
My son is a bright guy. It works to his disadvantage because his teachers can’t understand how he can be so smart and yet not function to the “capabilities of his cognitive score.” He has friends he communicates with on the internetz, and yet, yearns for a real life friend.
He knows that he needs to take a shower to be clean and yet he doesn’t take a shower, unless I remind him again and again.
He knows that he needs to eat but forgets to eat unless I remind him. And that leads to anorexia – yeesh, yet another thing to worry about.
He knows that his history report is due in two weeks, but he can’t figure out that working on it every day breaks a monumental task into manageable small steps.
He also has a really dry and ironic sense of humor – maybe he will be the new Steven Wright?
“He knows that he needs to eat but forgets to eat unless I remind him. And that leads to anorexia…”
No, it doesn’t. Anorexia is the extreme lack of nutrition intake, including binging/purging, to bring a person to a weight far below the healthy range for their height as a form of control over their life. Simply forgetting to eat or even refusing food when one should be hungry is therefore not anorexia. I should know: I’m autistic and have this exact type of feeding issue (amongst others).
“Dedj, I didn’t change the argument, but I clarified it.”
Utterly false. Nice try though.
Your original arguement was “those who communicate fluently on the internet are very likely to also be able to communicate outside of it too”
to “If someone has sufficient verbal and interactional skills as demonstrated through typing/writing, why would they have trouble with such communication through speaking?”
Communication and interaction are different things. Indeed, verbal skills and communication skills are not the same thing. So ask any Speech and Language therapist or your local Special Ed teacher. I know you wont because such a thing takes effort, something you have proven you are adverse to.
If you cannot see that you switched arguements halfway through then you are either:
too incompentant to see the difference
too inexperienced to see the difference
lying about it to save face
You should have said what you meant right at the beginning.
At the moment it looks like you’ve switched arguements as soon as people started showing you up as being wrong, which is entirely expected behavior from you.
You can claim it was your arguement all along, but it certainly wasn’t anywhere near what you intially said, and it certainly looks suspiciously like you’re changing it as we go along.
None of the options on how to interpret your behaviour looks good on you.
I’d advise you to stay quiet, lest you embaress yourself further.
Come back when you can get your own argument straight.
“Communication and interaction are different things.”
As are communication and speech. Not trying to destroy your argument, which is correct, just wanting to bolster it with additional information.
Dedj, how could you claim I “slyly changed arguments” if you claim that “It’s a complicated situation trying to have a discussion with someone who is absolutely sure of thier arguement”? You can’t have it both ways. Don’t neglect to acknowledge that verbal skills are a part of communication skills, and that interaction is impaired without communication skills, just to allow you to contradict anything I say.
Elaborating on what I was thinking and meaning isn’t really changing arguments. I’m not going to say the same statement over and over like a lunatic to try to convince someone. I’m not a propaganda pusher. It’s not possible to cover every aspect of an issue in just a single small sentence, but those like you don’t realize that. I was saying a lot of things I didn’t initially say, as I didn’t initially intend to have a discussion of it. I’m not some student or underling of yours, who you can just browbeat into recanting or thoughtlessly accepting what you say.
“You can’t have it both ways.”
Wasn’t trying to. If you’re absolutely sure that you ‘must’ be right, you’ll be more, not less, inclined to declare that you ‘actually’ meant something else.
“Don’t neglect to acknowledge that verbal skills are a part of communication skills, and that interaction is impaired without communication skills, just to allow you to contradict anything I say”
This doesn’t even make sense in the context of your arguement. You haven’t even made it clear what it’s supposed to be in reference to. It’s a classic example of exactly the sort of muddled thinking and equally muddled writing that gets people annoyed at you. Far from clarifying your point, it makes it even more obscure.
I’m fully aware that communication includes verbal skills, but communication is not comprised entirely of verbal skills, nor is verbal skill comprised entirely of language skill.
Please don’t reply until you can get your arguement straight.
We are talking about whether people with autism who can express themselves on the internet are self evidently – by that very act – indicating sufficient life skills.
Socrates even stated this to you clearly:
“Being able to communicate fluently on the internet is not a predictor of independent living skills nor very much else.”
You have not came up with a sufficient response, except to claim (now) that you were actually claiming that people who can use proficiently uses various forms of interpersonal communication on the internet may also demonstrate interpersonal skill off the internet.
This is not what was originally being discussed, so it’s hard to see why you think the point is even relevant regardless of how badly incorrect it is.
We are talking about independent living skills. Only you have equated internet communication= independant living skills.
“Elaborating on what I was thinking and meaning isn’t really changing arguments.”
No, but it certainly appears that way. You need to be more careful of what you say, otherwise people will continue to treat you like the uninformed person you present as.
I’m giving you advice on how to not come across as self-referential and mercurial as you currently do.
You have been repeatedly given advice on how to improve your knowledge base and critical thinking skills by multiple people multiple time across multiple discussions over an extended period of time. You have yet to show any sign of improvment or reflection.
Talk about what you want, but don’t pretend your contributions to this thread have been anything but useless and irrelevant.
“It’s not possible to cover every aspect of an issue in just a single small sentence, but those like you don’t realize that”
Yeah, except – as you’ve already been told before – people like me deal with complicated issues that take a lot of explaining on a routine basis, so you can shove that pathetic attempt at a snide insult where the sun don’t shine, boy. Don’t even begin to pretend that this subject is as complicated for everyone as it is for you. You may struggle with this, but that doesn’t mean we all do.
If you can add something releveant to the thread, please do. If you’re just going to switch and change irrelevant claims left right and centre – and then deny it – please leave.
If someone thinks they’re absolutely right, why would they change their claims? Get your accusations straight. I never said communication was comprised entirely of verbal skills and you know that. Try not to be so desperate. I shouldn’t even have responded to what Socrates desperately said regard communication, as I never used that idea about communication as a reason why I knew the thing that he wanted to deny. I wasn’t going into discussion of it initially. I should have made it clear initially what I intended by what I said.
“Only you have equated internet communication= independant living skills.” No, Socrates implied that I did, to undermine what I claimed regarding independent living skills, and I shouldn’t have let him get me to argue over something else.
“You have yet to show any sign of improvment or reflection.” You and others have yet to back up that the things you argue could be true and tenable. You haven’t shown any reasoning or examples to make it believable to those who aren’t prevented from questioning the sanity of what you advocate.
The subject is complicated for the professionals who can’t make up their minds. I shouldn’t have let this discussion get irrelevant.
Autism Speaks is a multi-million dollar charity which pays its executives six-figure salaries. With the level of unemployment you describe, and the tremendous resources of AS, shouldn’t the first thing Autism Speaks do is employ people with autism to work for their organization? That would seem like the most sensible action to take before even including any of us on their board.
Billy, you went right along with what Socrates said, and even added to it, thus confirming it was actually your view. It is plain for any reader to see.
Your denial is also irrelevant. Even if we do accept your claim that you were only talking about communication, any study of the subject would immediately provide reasons for why your arguement is wrong. You have been given advice on where to start this study before. You have always failed to take any advice.
You have yet to bring up a shred of evidence that the ‘aspies’ concerned have the fantastical skills you attribute to them.
As for getting my accusations straight? They are. People like you will do , as you have just done, anything rather than be proved wrong.
As for not being shown examples and reasons? Get out of here. You have been given direct references to literature multiple times by multiple people across multiple discussions. You have been given direct examples by mulitple people mulitple times across multiple discussions, including a few worldwide multimillion user ones above. You have been given major signposting to starting material that can be found easily in google.
The only person who has totally failed to give any reference, example or any evidence is you, and only you.
I bet thats someone elses fault too, huh? Just like disagreeing with you is ‘brow-beating’, yet you disagreeing with other people whilst throwing out insults and accusations left right and centre is just dandy.
Please, for your own education, get out of your room and go out and actually look to see if reality matches your assumptions.
I know you wont, as you wont like what you see.
I didn’t confirm what he said as being my view. We haven’t been talking of independent living skills as it pertains to communication, which is what he brought up. It’s already well known that those aspies have the many skills they have. They themselves let it be known in various sources, and it is apparent in what they do sometimes.
“direct references to literature multiple times by multiple people across multiple discussions” You sure make that seem ample, but neither do the sources explain the practicality of things well. They haven’t implemented their rhetoric so that their ideas can really affect the change that they claim they can do, to the extent that they promise. Don’t exaggerate with multiple this and multiple that, as I haven’t been presented with that much.
Typical Billy.
It is not an exaggeration to claim that you have been provided with multiple sources multiple times. I’ve personally witnessed it, and even contributed to it. I know that I have personally given you key words for google, names of professions that can advise you, and names of models and frames of reference that you can look up. Others have provided you with direct references to key texts, and key authours.
For you to claim that ‘the rhetoric hasn;t been practically implemented’ is demonstratably false, as you would already know had you bothered to follow my previous advice of googling “NHS social model”. You would have found that several Trusts already have adopted the social model and have done for years. You would, had you looked up the frames of reference reffered to above, the adaptive and compensatory FOR, known that they are already in clinical use and have been for years.
In most discussions, these would be seen as giving you key pointers for where to go next. That you will only accept, er. well , you never accept anything, so your opinion over what has and has not been laid before you is going to be dismissive anyway. That you don’t think you have been presented with much is to be expected of any person who has decided a priori that they must be right. It’s laughable that you think your claim is therefore valid.
You have been told all of this before. Your response has never referenced anything outisde of your own experience. Ever.
Anyway, your hypocrisy stinks. You state your opinion as if it’s self evident, but pi55 and moan “Help! Help! I’m being oppressed!” anytime someone else does the same. You demand evidence, yet present nothing, even when asked specifically.
Nothing anyone says even sparks you to go and find things out for yourself. You implicitly demand to have things handed to you, ironically from the very professional literature you dismiss and despise.
We have had this conversation over and over again before. You have yet to learn a thing. It’s clear that you don’t want to.
I feel as if these conversations are actually the result of you deliberately manipulating situations so that we can feed back into your own self-perception.
If you want people to treat you the way you demand, you best start giving something in return. Moaning, snide insults and laughably transparent denials don’t cut it.
Put some effort in for once or please leave.
“I know that I have personally given you key words for google, names of professions that can advise you, and names of models and frames of reference that you can look up.” Yeah, but those aren’t sources. I’ll look them up anyway. I haven’t been given the plethora of references that you imply.
I looked up “NHS social model”, and didn’t really come across what you said I would. I don’t deny that the model has been adopted by the trusts and organizations. But I see no evidence of how they actually applied it to improve real life situations involving mental disability. I’ve seen the rhetoric numerous times, but haven’t heard of many details of what they do or cause to be done regarding that.
I don’t need to present evidence of common knowledge of what is going on around here. As someone who is sufficiently familiar with the issues and individuals involved, there shouldn’t be a reason for you to not know what I’m referring to, particulary when I talk of the characteristics of those on your side. I’ve looked up things before that were presented to me, although I haven’t talked about them.
Common knowledge that does not require evidence is more correctly understood as ignorance. If someone persists in their ignorance and refuses to accept evidence which contradicts their point of view, that is prejudice.
Sorry to break it to you Billy, but the social model has been in clinical use for some time now, with no noted problems.
You are not amongst the people that need to be convinced of it’s usefullness, so what you think is irrelevant.
That you claim to have not been presented evidence is not only false, but irrelevant. You really don’t get that (in this context) the social model, and the adaptive and compensatory frames of reference, are approaches to assessing and providing for health care needs.
You are claiming that you have never been presented with evidence (yet you’ve magically changed your arguement again – fancy that), yet such evidence is in entry level textbooks, has been in clinical use for some time (you’ve yet to answer why the adaptive industry is so prevalant if it doesn’t work) and presents no problem for the actual people who do actually matter.
“there shouldn’t be a reason for you to not know what I’m referring to, particulary when I talk of the characteristics of those on your side”
Oh but there should be. You have made demonstratebly false accusations against ‘my side’ with zero backup. You have been repeatedly reffered to examples that contradict you, yet you accept nothing. You demand evidence be handed to you in exactly the format you demand, but dont give out a bean and yet expect us to accept your say so.
If you cannot see what is wrong with your behaviour and your demands, then there is no helping you.
You have gone over this ground with many people, many times, and have learnt nothing. You have been given more than enough clues to get up off your arse and find things out for yourself.
You are not one of the people whose opinion on this will ever matter at any level.
I fail to see why I should continue to debate with a person who clearly has not even begun to take any responsibility for thier own learning. You cant even come up with any even halfway decent arguements except ‘I aint seen nuthin’.
Well guess what buddy? Nobody cares. Your knowledge base is your responsibility and yours only. Time for you to grow some and live up to it.
Pony up some real evidence or clear your lazy ass off out of here.
Actually, come to think of it, we all know that Billy cannot substantiate his arguement beyond “I don’t think so” and “I haven’t seen it”
Well guess what Billy? You better start coming up with arguements against the social model etc etc, that are better than “I’m not convinced”
If you can’t tell us why you ‘not being convinced’ should actually matter to anyone outside of your room, then do so. Anything else is just Billy-bluster.
What clinical use? To accomplish what? I want real answers, not bureaucratic mission statements. I’ve looked through a lot of things and seen only vague talk, whose meanings depend on subjective assessments by those who expressed them. For instance, when they say that barriers cause disability which “prevents disabled people from participating in society on an equal level with others.”, who knows what they consider participating in society on an equal level, which supposedly can be achieved by removing the barriers they refer to?
http://www.imperial.nhs.uk/equalityanddiversity/disability/index.htm
“You are not amongst the people that need to be convinced of it’s usefullness, so what you think is irrelevant.” What’s that supposed to mean?
I wasn’t presented with a lot of evidence, and what you said before showed it, and I didn’t let that go unacknowledged.
“the social model, and the adaptive and compensatory frames of reference, are approaches to assessing and providing for health care needs.”
I did see something regarding the social model being applied to improve the application of health care, but that was all I saw.
“(yet you’ve magically changed your arguement again – fancy that)” Please, stop being so cocky.
What is the “adaptive” industry you are referring to?
There is no disproving the fortunate characteristics of those on your side.
I don’t think you really expected me to look up any of the things you mentioned. I saw a source that said that removal of barriers won’t get rid of problems that come with certain types of impairment.
Click to access Coaliton.pdf
Another source says that the switch from the medical to the social model of disability “has meant that in some areas the NHS has withdrawn attention and resources from intellectual disability”
http://www.intellectualdisability.info/values/social_care_pg.html
“You cant even come up with any even halfway decent arguements except ‘I aint seen nuthin’.” If something can’t be observed, nobody should be expected to believe it. I won’t debate you all as one would have to debate with the clergy.
“Your knowledge base is your responsibility and yours only.” If you say something is true, it’s up to you to prove it.
Billy Cresp…
Go home. You left your bath running. Your lino’s peeling and it’s pissing through into your lower neighbour’s flat! You aren’t up to dealing with topics here – you read with an agenda, rather than with an open mind, and you misinterpret seemingly quite intentionally.
Besides… you’re derailing a serious topic and annoying the living piss out of many reasonable people.
Interesting points made. As a mother of a severely autistic adult child (he’s on you tube under autism self injury)…it does seem true that the majority of the cases and causes are solely focused on children with autism, almost half, in my humble opinion, which occur to be misdiagnosed with autism. I think the autism community has turned this spectrum into a melting pot for about anything from adhd to landau kleffner syndrome…it’s sad, because it’s shifted focus off the more serious cases of autism that really do need help…frankly the whole “cure autism” thing is a bunch of bs….we aren’t going to cure autism. It’s a life long disorder….what bugs me is that for years I’ve witnessed all these groups doing their big fundraisers and where is the money going? It sure isn’t going to families raising the most severe cases of autism…how sad…there are so many con artists who have entered the autism debates. That said, there are many parents who are quite overwhelmed with their childrens diagnosis and may not understand what direction they are going….they need to be re directed to focus on helping their kids right now and not be chasing false hopes in the form of cures…just my opinion
Who exactly is being myopic? YOU all in the neurodiversity movement? Or the others? Seems like YOU HF auties and aspies seem to have a “one world dimension’, as well when you IGNORE severely or profoundly autistic people as seen on YOU TUBE under “autism self injury” Yea, I know, some of you can’t handle this reality. It’s just toooooooooo autistic for you all. U hate this case. Gee, who R the myopic ones? How sad that you would show such prejudice, such hatred, such discrimination and willful ignorance towards this profoundly autistic young adult.
Don’t be ridiculous Maggie. Some of us have what you would refer to as ‘low functioning’ children. Neurodiversity is far from just about autism or just about adults with AS.
Actually, those who cannot see that use of functioning labels is offensive and therefore quit using them are the truly myopic ones, and I say that as a short-sighted person.