"Autism Speaks" Founder Bob Wright Snubs Poor, Autistic Adults
The New York Post reported on
Autism Speaks founder Bob Wright (left) 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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There are people who think that psychologists who do not have their own children should not specialize in the treatment of children. There are people who believe that those who do not have children cannot be teachers. Having autism does not make one an expert on autism. It does convey knowledge of how ONE feels about ONE's own autism, and how ONE feels about how others treat that ONE. A Board of Directors might best be served by a mix of parents of autistic children, scientists, therapists, and those who have the financial interest in helping the broader autistic population. Making a high functioning autistic person a board member brings the narrow perspective that such a person carries. I wonder whether the social limitations of such an individual would be valuable to the board or a liability.
When you mention authority I think think you hit it right on the head--because with authority comes decision making, economic, and social power.
True, being autistic does not make one an expert an autism but that is a statement that applies universally across the board and not just to anyone group. Being a parent does not make you an expert on Autism either. It does convey knowledge of how ONE feels about ONE's own child with autism, and how ONE feels about how others treat that ONE's autistic child.
As an organization Autism Speaks is possibly one of the most ironically named. They claim to speak for children who can't speak for themselves--but when autistic people who have had many of the same experiences their children are experiencing now can make themselves understood,they write autistic adults off.
If autistic adults are so lucky to be well and have nothing in common with their children because these adults *can* speak, they have effectively silenced anyone who might disagree with them. If that's not a narrow perspective I don't know what is. I, an autistic adult, am yesterday's autistic child. I'll take my social limitations of needing to make a conscious effort to understand others, over the self-imposed limits of forcing my ideology on other people any day of the week!
Give an Autistic adequate tools and they will communicate their opposition to a 'cure'.
Do not underestimate the Power of Autism
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.")
If autism is not a part of one's self, if it is disease to cured. An invading organism to be killed , defeated, and recovered from than Autism Speaks purpose makes sense.
However...
If autism is a part of one's person, then genetic testing to find said hypothetical gene says to that person. "You are not valuable". "Your existence is not valuable." I think that's where the shiny aspie argument may come from. From people less noticeably autistic saying," I'm valuable too! People crying for acknowledgment of their intrinsic worth and human dignity.
Of course, that in and of itself is a revealing statement. It says that our society places value on people with abilities more resembling their own;both in quantity and quality--and that less visibly disabled people face just as many challenges as their more visibly disabled counterparts.Is a lower functioning person's life less valuable because they are visibly disabled? In our dreams for the future are our values for the present.
Don't discard the fear of abortion just yet.
What bothers me is that everyone and his dog seems to have autism now. Please. If you can write like that, you may have other issues but you can work, understand principles and concepts and probably care for yourself. Therefore you're no worse off than any other person who may have bad joints, a bad heart, dyslexia, etc. We all have to cope with flaws and illness but we don't all have to pick up the name of a truly serious life-threatening (because of lack of boundaries and fear) disorder and claim it for ourselves. Nowadays the label autism has been applied to everyone who even fails to make eye contact.
There are millions of people who have social issues, extreme phobias, extreme shyness or left-field imaginations, depression, and obsessions etc etc. But if we are cognizant we can function possibly with a little regular doctor or medication help. But all of a sudden anyone who falls into the preceding categories is autistic or may be autistic. It makes me sick. A child is now autistic if he stares off in space.
My sister was born in 1970 when autism wasn't a household word or a trend. She is a true autistic. No speech, self-destructive, no contact, repetitive, obsessive and impossible to teach. She can't recite numbers, read a phone book, work a computer, write poetry or essays or think like a cow. She has to be sat on to keep her from tearing her own skin off. People like her are the people that need our help. But there is no funding and I blame this "sudden epidemic" of autism and the many who are "high functioning" are clogging up the system.
The first thing any government looks at when it is required to take action is numbers. And in this case the numbers are deceiving. Then what happens is that the people who REALLY need help with feeding, bathing, dressing, toilet, menstruation, appointments, dental, protection from themselves and some sort of mental stimulation are neglected. But most importantly elderly parents like mine who could pass away at any time, don't even have the comfort of knowing where my sister will go when they do die because there are no residences or funding to plan any. I can just imagine in the committee meetings (for I used to work in the Senate as an admin), the officials look at the figures and say "it will take a lot of time and money to get programs up and running for this large a group,
I suggest to all these doctors casting this label (and people quick to claim it) to do some research and read some personal stories of what real autism is like. Maybe they wouldn't be so quick to make the call. Isn't it funny how we now have an autism spectrum? We didn't used to. In fact, it was very rare indeed. We didn't used to have ADD or ADHD- we were just un-disciplined kids who didn't pay attention. I was told as an adult that I probably had ADD when I was a kid, but I knew it was because I'd rather day-dream than work. But we don't want to think we are responsible for our own bad behaviour, so we file it under a disorder and then it's not our fault. I don't think there's something in the water- I think there's something in our heads. We have become a society of people in search of a diagnosis.
Thanks, Kev. I have yet to hear anything at all from Autism Speaks about their reasons for keeping adults with autism off the board... in fact, they've never (so far as I know) even mentioned the issue despite many of us in the community asking, requesting, and demanding a response. I find it all very strange.
I also find it rather absurd to hear about young Christian (Bob's grandchild) from Bob - when Bob's daughter, Christian's mom, is apparently in complete disagreement with her parents and has very vocally broken away from Autism Speaks. Again, strange stuff.
As you say, kids with autism can't speak for themselves - in large part because they're kids. But there are plenty of teens and adults out there who are talking up a storm. Sure would be nice to give at least a couple of those individuals a seat at the table.
Lisa
Kevin Leitch does what he often does, he misrepresents by super-imposing his Neurodiversity ideology on the facts. In this case he misrepresents what Bob Wright said by pretending that Mr Wright opposes the interests of autistic adults. Nonsense.
The handful of autistic adults who were trying to ruin a benefit held to help autistic children were there as part of a protest organized by ASAN, a self appointed Autism "Spectrum" Self Advocacy Network. ASAN has no representatives of severely autistic children or adults on its board and opposes the objectives, including the search for autism treatments and cures, of Autism Speaks. They even oppose the existence of Autism Speaks.
Bob Wright simply pointed out that these very high functioning autistic adults who were protesting a benefit for autistic children have little in common with his own grandson who lacks their many gifts and abilities. I am the father of a severely impaired 13 year old boy with Autistic Disorder and I agree. These few very fortunate people have no inherent right to speak for my son or other autistic children or severely impaired autistic youths and adults. For that matter they do not represent all autistic adults either.
Many autistic children are in need of treatment, cures, help for the impairments imposed by their autism disorders. That is what the few protesters oppose. Bob Wright simply pointed out, more politely than I would have done, how absurd and self centered their activities are at times.
Mr. Leitch opposes Autism Speaks organizational goals of researching causes and cures for autism and generally helping autistic children and adults. He did not openly admit his anti-Autism Speaks bias or his subservience to anti-autism cure groups like ASAN but his comments reek of these facts.
Mr. Leitch should provide readers with some science backed "factoids" of his own. Like what these barely autistic, attention seeking protesters have in common with severely autistic children or severely autistic adults. He might also provide some factoids to demonstrate why he feels that the protesters represent autistic adults generally or anyone except themselves.
Bob Wright, unlike Kevin Leitch, and the protesters who tried to disrupt the Autism Speaks benefit, has done much to help autistic children AND autistic adults.I hope Bob Wright continues his good works undeterred by the self centered ideological agendas like those of the protesters, ASAN and Kevin Leitch who seek to interfere with families and organizations trying to help autistic children and adults.
Have you ever given your son a keyboard and actually asked him if he wants to be 'cured'? Given adequate tools of communication, many adults with Kanner's Autism have opposed the death sentence that a 'cure' would involve. Google 'Snoopy Autism' and see!
Do not underestimate the Power of Autism