WrongPlanet.net
WP Members: > 80,000



Aspie Affection

New Today: 0
New Yesterday: 21

Second Page: Michael John Carley and Autism Speaks: The Collaboration Thickens
Posted on Wednesday, December 17 @ 22:57:17 EST by
WrongPlanet Tips

Although (as far as I know) Michael John Carley of GRASP and Alison Tepper Singer of Autism Speaks are not literally in bed together, they have had such a cozy relationship over the past two years that the expression seems quite apropos. Most of us know Singer from her appearance in the Autism Every Day film, in which she attained worldwide infamy (and, if I recall correctly, a visit from child protective services) for saying, in front of her autistic daughter, that she had fantasized about driving off the George Washington Bridge with her daughter in the car.

Carley's sordid history of kissing up to Autism Speaks began in 2006 when he and Singer wrote so-called articles of understanding, in which Singer argued in favor of Autism Speaks' cure and prevention research by claiming that her daughter "does not have any areas of strengths that I fear squashing through medication, intervention or cure," and Carley slavishly bleated that autistic adults should be more understanding of the suffering of such parents.

Read on for the details and links.

Thereafter, Autism Speaks' president, Mark Roithmayr, rewarded Carley for his helpful propaganda services by providing a glowing endorsement to help with the marketing of a book by Carley that was published earlier this year.

Carley is now trying to do a favor for his old pal Singer, whom he apparently believes to be in jeopardy of losing her job at Autism Speaks, by urging GRASP members and others to write to Roithmayr supporting her. An e-mail widely circulated today by Carley first praises Singer for her opposition to anti-vaccine quackery and then suggests that she is in need of public support because Katie Wright publicly criticized her views. Here's an excerpt:

Daughter Katie has recently gone public in an "Age of Autism" column in which she cites two Autism Speaks employees as having prevented the organization from giving the vaccine issue the attention or funding she feels it deserves. At the end of her self-incriminatory verbiage (seen unedited below) she calls upon vaccine theorists to email Autism Speaks' Executive Director Mark Roithmayr urging him (at the very least) to push Autism Speaks towards becoming an organization that supports vaccine theory.

I am asking you to email Roithmayr as well-in support of Autism Speaks' not having become a vaccine theory organization; and in support of the two employees daughter Katie clearly wants out. I know we've had disagreements with this org, but Autism Speaks becoming a vaccine theory outlet would be a very bad thing for the world.

The two employees are Andy Shih and Alison Tepper-Singer. Many people know Singer, and know of GRASP's relationship with her. Whatever existing disagreements remain, she's the one responsible for Autism Speaks eradicating language like "wiping out autism" or "making it a word in the history books." Frankly, they don't even use the word "cure" as much either. We need to keep Autism Speaks on this path. I might get called a "sap" for saying this, but they're not just making these changes for better PR; they're actually starting to get it. Please write in your emails that if these two employees are indeed against vaccine theories, that they should be supported, not denounced.

When I read this disgraceful piece of revisionist history by Carley, my jaw just about hit the floor. Here are the facts, which anyone who has been paying attention already knows: Autism Speaks never has come close to being an anti-vaccine organization and is highly unlikely to do so. From its inception, it always has viewed autism as a genetic condition, and it has provided vast amounts of money to fund genetic research studies with the express goal of developing a prenatal test for autism. As for Carley's absurd claim that Singer has been eradicating pro-eugenics language at Autism Speaks, I would advise him to take a closer look at statements made by co-founder Suzanne Wright, who just this year gave a national magazine interview in which she specifically advocated eradicating autistic people.

I see no reasonable possibility of Autism Speaks ceasing to be a pro-eugenics hate group as long as Suzanne Wright is associated with the organization; and given Alison Tepper Singer's past history, I find it ludicrous that Carley thinks he has even the slightest chance of persuading the autistic community that Singer has had a change of heart.



This editorial was written by Autistic blogger Autistic Bitch from Hell. Check out her blog for more info!


               


 
· More about WrongPlanet Tips
· News by abfh


Most read story about WrongPlanet Tips:
What is Asperger's Syndrome?


Average Score: 3.47
Votes: 40


Please take a second and vote for this article:

Excellent
Very Good
Good
Regular
Bad




The comments are owned by the poster. We aren't responsible for their content.

No Comments Allowed for Anonymous, please register

Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by truth440 Monday, March 02 @ 16:56:59 EST
(User Info | Send a Message)
Good links on treatment of Autism. Dr Buttar information. http://www.defeatautismyesterday.com/Buttarnotes.htm http://www.drbuttar.com/ Good video on the politics of medicine. http://search.msn.com/results.aspx?q=dr+buttar&go=&form=QBRE The Dan diet protocol needs be added for some of these kids.



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by Master_Shake Sunday, February 22 @ 06:40:42 EST
(User Info | Send a Message)
Nowhere in the developed world are people with autism going to be "eraticated." Some kind of holocaust isn't going to happen. Even though our society is still in the stone age when it comes to the treatment of autistic people, we have at least learned that the genocide of those that are different is wrong.



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by Ksiusia Wednesday, February 11 @ 21:43:35 EST
(User Info | Send a Message)
I wish movements would stop tearing themselves apart over the inside the system/outside the system methods. It's clear to me that not only would it be best to have people working in BOTH areas, but the nature of human group dynamics is such that some people will be more at home with and better at the radical/outsider approach and some will be better suited to the liberal/insider approach. Moreover, radical and liberal messages are both necessary in winning over the population at large, because some people will respond better to a message couched in liberal or libertarian terms and some will respond better to a radical approach. What needs to happen, though, is for liberal/insiders and radical/outsiders to work together, and to make a plan that involves them using their individual skills and inclinations toward a common goal. If they don't work and plan together, both can lose sight of what they're working for. The insiders become seduced and transformed by the existing power structure, while the radicals veer off into self-righteous subculturism and lose hope of connecting with or influencing anyone outside their enclaves.



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by ster Wednesday, December 24 @ 20:04:25 EST
(User Info | Send a Message)
I have met Michael, and was impressed by his empathy towards fellow aspies. I just don't feel that his intentions are anything but honorable.



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by Ishy Sunday, December 21 @ 20:02:01 EST
(User Info | Send a Message)
I have to say, I read Carley's book ("Asperger's from the Inside Out"), and it had no sound of a curbie. He's very humanistic but realistic too. His organization, GRASP, has some of his interviews and articles as well: I'd definitely consider reading them.



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by CockneyRebel Friday, December 19 @ 10:04:22 EST
(User Info | Send a Message | Journal)
This is putting us on the verge of another holocaust. It's up to us to stop this from happening. Their idea of a cure is abortion. Now you see why I'm so Pro-life.



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by oblio Thursday, December 18 @ 02:26:43 EST
(User Info | Send a Message | Journal)
The mother of sensitive issues in the autism debate. And, as such, I do not think it is correct that this higly partisan contribution be awarded such a 'front page' status - irrespective of my position in the debate. Generally, I do not subscribe to conspiracy theories; that would require much more intelligence from way too many for way too much time, than I can ascribe to humanity. Man is too stupid for that.



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by violet_yoshi Thursday, December 18 @ 17:46:21 EST
(User Info | Send a Message)
I'm sure people before the Genocides of WW2 thought, that Hitler's views were a matter of conspiracy.



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by richie Thursday, December 18 @ 19:01:56 EST
(User Info | Send a Message | Journal) http://www.facebook.com/richieM99
As I have posted elsewhere within the WP forum that puzzle piece logo could very well be the next Yellow Star of David and their so called cure the next "Final Solution... http://www.wrongplanet.net/postp940506.html#940506



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by ConcernedAutistic Monday, January 12 @ 19:25:46 EST
(User Info | Send a Message)
Up to this point, Michael John Carley's sorry history is that any benefits derived by the autistic community through GRASP only came as collateral to his own personal enrichment. So now he wants us to believe that an anti-vax Autism Speaks would be worse than what we currently have. Worse for whom? Certainly not the autistic community. Autism Speaks, believing that autism is a genetic condition, is funding research that would allow people to identify autistic fetuses and abort them before they're born. So an anti-vax Autism Speaks would actually be BETTER for the autistic community, because at least then we would not have a pro-eugenics hate group that wants to extinguish us. So it would appear that an anti-vax Autism Speaks would only be worse for Michael John Carley. The question is why? In this case, supporting Autism Speaks as it is now, would personally enrich MJC, (how, we do not know), but would result in harm to autistics. And the supreme insult is that he expects us to follow his directives like obedient lambs to the slaughter.



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by graemephillips Monday, January 12 @ 10:56:05 EST
(User Info | Send a Message)
I view things like this as being counterproductive to the autism rights movement. Conspiracy theories do not advance the movement in the slightest. An example in the race relations movement is Jesse Jackson. He has made some minor achievements by being a thorn in people's sides, but this is outstripped by the public becoming fed up of him trying to bring down everyone who utters a non-PC word and his perpetual victim status. The autism rights movement needs to stop all this infighting and just accept that there may be points of disagreement. That way, we can move forward and achieve some concrete things for our neurological group. Otherwise, the general public will be put off by us.



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by Diane1027 Monday, January 12 @ 11:20:56 EST
(User Info | Send a Message)
Eighteen months ago, when my daughter (17 at the time) finally got her AS diagnosis, it was a huge relief to those of us who love her but could never understand what she was going through. She did not accept it well; she was depressed and confused, although we reassured her that she was still the same person she always had been, and was still surrounded by family and friends who adore her. I found a teen group for her in Bethpage, NY - an hour by car from where we live - where she could meet and talk with other teens on the spectrum. Michael John Carley was their group leader. He became a mentor to my daughter, and helped her to accept her diagnosis and to build her self-esteem. Every month, she looked forward to those meetings... it was the only thing that got her through the first few months. Last year, my daughter and I decided that we needed to find a teen group closer to home, but there was nothing in the Queens, NY area. We approached several organizations, and a local organization - NYFAC (New York Families for Autistic Children) - took up the cause and agreed that the need existed for a teen group in Queens. Michael John Carley was there from the inception, making sure that kids on the spectrum in our area had an opportunity to know they are not alone, and to meet other teens they could trust and bond with. With NYFAC and Michael John, these kids had a chance to make friends and improve their self-esteem. Michael John made sure that these teens had input about THEIR group, and gave them a sense of pride. You know, everyone knows about the big projects that he is involved with... but there is so much that this man does that falls under the radar. Without him, I would hate to think about where my daughter would be (emotionally) right now. He is selfless and giving, and has made such a difference in the world - for both NTs and Aspies! He has taught acceptance, understanding and patience - in his actions and in his words. In my opinion, Michael John gives 200% of himself and it saddens me that such negative things are being tossed about. As for the topic at hand... What is it they say about the enemy you know being better than the enemy you don't??? Just because you don't see eye to eye with a person or organization... just remember, there are worst ones out there. And we should be relieved that there are people at Autism Speaks who have picked up and read Michael John's book - perhaps they too will learn something!



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by Mixtli Saturday, January 03 @ 00:43:47 EST
(User Info | Send a Message)
Although I believe this article is informative, and the opinions of ABfH are in my opinion likely justafiable, I would like to point out that this piece reads as an OP/ED piece. Maybe Wrongplanet should have News and OP/ED sections. If for no other reason than to keep the terminology accurate.



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by sartresue Tuesday, December 30 @ 10:55:49 EST
(User Info | Send a Message)
Carley and me (yuck) topic Two sides of the same worthless coin: Anti-vaccine theory and eugenics. Either one is destructive, and now they are on the same page. Genocidal. If Autism Sprechs wants to do some good then it could be finding ways to help these Autistic children grow and become the best they can be without resorting to crackpot theories and prenatal testing. Yes, this is difficult. The easy ways out are behaviour meds and driving off a bridge. Start enjoying the children, no matter what their challenges. Seek help from therapists who advocate an individual approach. No one Autistic child is like another. A lot of the destructive behaviour is the result of the child sensing s/he is not accepted. Designer kids? I have three of them, all challenging. And they are all NT. I would have had an easier time with a child like me! I have Asperger Syndrome.



Re: Michael John Carley and Autism Speaks: The Collaboration Thickens (Score: 1)
by mjc Monday, December 29 @ 20:43:23 EST
(User Info | Send a Message) http://www.michaeljohncarley.com
From Michael John Carley:

I’m responding to abfh’s post somewhat against my will. Were it just a blog entry, there’d probably be no call for me to do so. But since the post was given front-page status by Wrongplanet, others are pushing me to write back. I don’t like it. I understand that folks like abfh are a part of my job; a job I chose, knowing full well what I was getting into when I took my position at GRASP, so you get used to the negative post or two. But I understand the concerns of those who have asked me to respond, so I respectfully acquiesce to their concerns.

There are a lot of reasons why I don’t write back to stuff like this. It’s not just because I don’t want to dignify the out-of-this-universe claims being made, nor is it simply because I don’t want to engage in a dialogue with someone whom I don’t believe has the ability to dialogue.

I don’t like responding because I don’t want to be the person to make folks like abfh see how unable they are to be a constructive part of the figurative battles we’re all waging. I don’t particularly want her to know how she breaks my heart in how well she works for the opposition. I don’t want her to know how unable she is at reading what she says she’s read, whether it’s my articles, books, or anyone else’s (and that’s taking her at her word that she actually read them). I don’t want her to know that what drives her is not the pride she states she feels for her diagnosis, but instead is the not-so-worthy anger, anxiety, or depression that so tragically accompanies life lived in the behavioral minority inside a world that doesn’t fully understand us. I don’t want her to know how almost all of us struggle with these byproducts, but that most of us don’t give in to them to the degree that she does. I don’t particularly want to be the one to point out how unhappy she was long before Autism Speaks began. I don’t want her to know that when we finally get rid of the tragic events in our lives that cause that anger, anxiety, and depression; that we may very well appear to be a completely different-looking collective; one where no one resembles abfh.

There is no conspiracy or secret agreement between GRASP and Autism Speaks. There is animosity towards us by a select few posters because we believe in engaging Autism Speaks in order to change them. The middle finger route from across the street wouldn’t work if we were experiencing it. It probably won’t work with them. Folks should feel to disagree with this question of “how” change will come to Autism Speaks, but to suggest the secret payments or agreements is just sad.

My relationship with Alison Tepper-Singer is not one that is rooted in ideological agreement whatsoever. But it is rooted in personal trust. I have never held mirrored belief systems as the value of another person. abfh and I have infinitely similar goals in mind, but on a personal level? I trust Alison. Despite what she did in that movie (which is another debate), the rapport so far has been of value to all of us. This is just me, but . . . I would rather spend a month with someone holding polar opposite views—whom I felt I could trust—than one day with someone whose belief systems ran parallel to mine, whom I couldn’t (especially if it’s a work-related issue; where something needs to get done). Call me old-fashioned, but character does count to me.

The quote for my book that abfh was incensed by, is perfect. It shows respect without claiming any agreement for my views. I’m proud to have it. Remember, I’m an ex minor-league diplomat, and change will not come about between adversaries until first some common ground centered around agreements can be found. They are too big, and too loaded, to be “brought down” by internet posts. So yes, we talk with them, compromising on none of the disagreements, but addressing them respectfully given that we don’t believe they’ll change any other way, and that we wouldn't want to operate any other way. I don’t think anything has contributed more towards their decreased use of the word “cure” than those Articles of Understanding that abfh (and a couple of others, admittedly) so resents, and I invite wrongplanet’s members to read them (they’re on GRASP's website) if you have any doubts about this.

I don’t want abfh to see how identical the goals of GRASP and abfh really are, but that over that difference of opinion in how we’ll achieve those goals, that she spirals into the type of comic conspiracy theorist that is far more ammunition than it is opposition for those who use the word “cure.” I may not be on Autism Speaks’ payroll, but in the grand scheme of things, she deserves to be, as do others who publicly state similar hatred towards GRASP’s policies of engaging ideological opposites (disagreement is one thing; hatred another). I don’t want her to know how terribly she makes people on the spectrum look, and on this I take some solace because based on what I’ve seen, she may never understand this.

I don’t want to be the one who shows her when she’s being simply a bully, or that if there were any questions about what GRASP does, that she could’ve contacted us. We’re not liars, and we’re very proud of what we do so we’d answer her honestly. My email address is also fairly well known. I don’t want her to know how proud I am of GRASP’s policies that are more about community than free speech, especially if free speech means getting to name-call other people on the spectrum—and that how within those rules, she’d never fit in.

And I didn’t want the spectrumite world to know how disappointed I am in Wrongplanet.net for giving her posting the validity of front-page treatment. Wrongplanet.net and GRASP have a long-standing relationship full of gorgeous gestures in both directions, but such a decision on wrongplanet’s part was a conscious choice, and one that I am confused by. I don’t expect abfh to know any better. But I did expect wrongplanet to. There’s a great difference between an informed debate, and an uninformed blast of misdirected anger.

Change will come from all sides; from bloggers, from GRASP-types—the grass roots cyberspace portions and the “suit sits at the table” portions working hard, if not in tandem. But while bloggers have demonstrated great ability at dissecting the issues and getting to the roots of a lot of the problems facing us, they have shown disappointing ability or willingness to be a part of fixing things in a way that isn’t fantasy, or isn’t solely based on outside commentary. Again, if someone slandered you (this is me directly talking to the reader here), would you just do what they tell you? You might fight back, or you might walk away, but I don’t think anyone’s going to bend over and do whatever the name-caller tells you to do. Nobody would.

I was raised on a great principle that carries great weight herein: That it is not a sin to be ignorant (perhaps Autism Speaks), and neither is it a sin to be frustrated (perhaps us), but it is a sin to be a jerk. One thing abfh and I probably agree on is that being on the spectrum does NOT mean you don’t have it in you to be a suspect human being. In response to my response, she’ll likely wonder “Hey, he doesn’t know me . . .” and that would be a sad, poetic justice.

There is one thing I do want abfh to know, however. Whether her use of the word “bitch” is meant as a double-entendre, or some wordplay meant to turn an insult into an empowering source of pride; I do not believe that anyone can be much of an advocate for themselves, or for others, when they literally call themselves a “bitch.” Internally, and over the long haul, I don’t see how that can work. She’s unhappy, and maybe there will come a day in which this will change. I hope so.

Sincerely sorry to respond,

Michael John Carley
Executive Director,
GRASP
And author, “Asperger’s From the Inside-Out,” and the upcoming “Cures, Vaccines, Research,

Read the rest of this comment...


Read more Articles on Wrong Planet



Wrong Planet is a Registered Trademark.
Copyright 2004-2014, Wrong Planet, LLC and Alex Plank. Alex does public speaking for Autism.

Advertise on Wrong Planet

Alex Hotchalk / Glam 

Alex Plank  Aspie Affection 

Terms of Service - You must read this as a user of Wrong Planet | Privacy Policy

Subscribe: RSS Feed  Wrong Planet News  Wrong Planet Forums




fine art