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Noted Self-Advocate Cuts Ties With Autism Speaks

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A prominent self-advocate is resigning from his post with Autism Speaks citing “destructive” public statements from the organization’s leadership and their disinterest in his ideas.

John Elder Robison says he has resigned from Autism Speaks’ science and treatment advisory boards, which help review scientific proposals that the organization considers funding.

In the role, he was one of, if not the only, individual with autism actively weighing in on decision-making at the group.

Robison said he was prompted to resign after reading a commentary this week by Autism Speaks co-founder Suzanne Wright who wrote on the group’s website about an “autism crisis” that she described as a “national emergency.”

In the piece, Wright said families affected by autism have been left to “split up, go broke and struggle through their days and years.”

“Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism,” Wright wrote.

The words did not sit well with many in the autism community and, as a high-profile representative of Autism Speaks, Robison said anger over Wright’s piece was directed his way.

“I had been criticized right along for working with Autism Speaks, but the tone of Mrs. Wright’s recent essay made the current attacks much more strident,” Robison said in an email to Disability Scoop. “I too was troubled by her essay, and I realized her words reflected the thoughts of the top leadership of the organization.”

“I would never say the words she said in that article,” he said.

Robison said he notified Autism Speaks of his resignation from his volunteer role in a letter to the group’s president Liz Feld earlier this week and, when he received no reply, decided to write about the decision to step down on his blog. The posting generated hundreds of supportive comments.

Autism Speaks has long had a touchy rapport with many self-advocates who object to the lack of representation of people with autism within the group’s leadership and have criticized the organization for making statements characterizing autism as an epidemic in need of a cure.

But having a public figure in their corner like Robison — who has authored several books and is known for speaking about his experiences on the autism spectrum — helped Autism Speaks project an image of inclusiveness.

Now, however, critics say Robison’s break from the group is more evidence that Autism Speaks is a top-down entity that isn’t interested in views from those with autism.

“Robison was the only autistic affiliated with the organization’s leadership,” said Ari Ne’eman, president of the Autistic Self Advocacy Network and a long-time critic of Autism Speaks. “I think his departure speaks to the fact that Autism Speaks is not an organization capable of reform.”

For his part, however, Robison said the situation is unfortunate given that Autism Speaks’ fundraising power far exceeds that of any of the other groups focused on the developmental disorder. Robison said that he had hoped to be able to promote change from within the group, but found that his suggestions of late were “politely ignored.”

“It’s a sad day for me because they have so much potential, but so little is actually realized. I hoped I could do more,” Robison said.

Autism Speaks spokesman C.J. Volpe did not respond to questions about Robison’s resignation, only saying that the group would prefer to talk about its policy summit in Washington, D.C. this week.

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Comments (28 Responses)

  1. Whitney says:

    In truth Autism Speaks does little in promotion people with autism. The fact the organization is more like a vehicle to create an apartheid within society. Thus creating a class system base upon how social you are with out real substance. I would hope someday Autism Speaks to be reveal for what it is.

  2. Jeff Coy says:

    If Autism Speaks won’t speak about Mr. Robison’s departure and prefers to speak about the summit, then an appropriate question would focus on the inclusion of the Rotenberg Center as a listed resource at a current resource fair put on by Autism Speaks.

  3. MsAmericanPatriot says:

    Autism Speaks is nothing more than an apartheid, eugenics minded organization. They were created by people who were embarrassed to have a individual with autism in their family. This summit has the autism community especially those who have autism fearful for their lives because this screams of war and eradication of autistics. They need to be brought down once and for all. They are in it for the money and star appeal because most if not all celebrity types seem to flock to it thinking they are doing a good thing but are not. The Judge Rotenburg Center is a very very CONTROVERSIAL place and has been know to use very very abusive techniques in the handling of intellectually challenged individuals. This should show that Autism Speaks and progressives are NO friends to autistic people.

  4. Paula C. Durbin-Westby says:

    I am heartened to see not only John Elder Robison’s resignation but many parents who formerly supported Autism Speaks finally seeing the light. Mention needs to also be made of other initiatives this week- the letter-writing campaign started by Beth Ryan of Parenting Autistic Children with Love and Acceptance, the protest organized by Lydia Brown, the ongoing work of the Autistic Self Advocacy Network, and the activism of many Autistics and allies who have countered the offensive rhetoric of Autism Speaks since the organization was started.

  5. Lorre Leon Mendelson says:

    Again we are reminded- NOTHING about us without us.

  6. vmgillen says:

    Autism Speaks is primarily PARENT-driven. This can, and has, created big problems, usually caused by a tunnel-vision focus on normalcy (which ultimately has little to do with the child). Take a look at “treatments” over the years for CP, or limb-deficiencies, or ADHD drugs…etc. I am saying this as the parent of a young man who engages in self-injurious behavior, who will elope at the drop of a hat, running across highways start naked… I would certainly like to see change – but there is absolutely no reason to denigrate my child. They lose the individual in the diagnosis, and support the unfortunate tendency for parents to view their kids as accessories, rather than the separate people they really are.

  7. Tracey Richards says:

    How telling that Mr. Robison received no response to his letter of resignation. How very indicative of Autism Speak’s unwillingness to listen to autistic individuals, even as it claims to “speak” for them. What hypocrisy. I am more and more disgusted by the ridiculous antics of this powerful lobby every day.

  8. fairlady68 says:

    Having read “Look Me In the Eye,” I have great respect for John E. Robison, and thus his decision is not to be taken lightly. As one commenter already mentioned, the Autism Speaks silence in response to his letter makes us wonder if they really do speak in the best interest of those on the spectrum. I also like the comment added here by L.L.Mendelson: “NOTHING about us without us.” I am sick and tired of celebrity involvement and the incessant focus on kids on the spectrum. How many of us so-called “high functioning” ADULTS struggle along every day with little understanding, recognition and support? But we are not so cute any more, so there you have it…

  9. Jenny says:

    This division is indicative and typical of splits in all disability communities. It is always a battle between those who are more severely disabled and those with mild disabilities. The numbers of those who are mildly disabled far exceed those who have significant needs. The more severe the disability the greater the impact on families and the more assistance needed. The more vulnerable you are the greater your risk of harm. There is a huge difference between someone who is mildly intellectually disabled and someone who is profoundly ID. Likewise with Cerebral Palsy and Autism. It’s tiresome. The needs are different and can’t be approached the same. There are desperate families across this nation, it may not be you or your family, but they exist nonetheless. Stop being insulted because it’s not you or yours that is being referred to.

  10. Diane says:

    My 23 year old son is on the Spectrum, and yes, there were some times of despair. When he wasn’t getting the schooling and treatments he needed, I sometimes feared for his future. But you know what? There were also times of despair and fear for the future for my non-Spectrum daughter. Would I change either of them? of course not! My son has learned to live with his uniqueness and thankfully, has a phenomenal therapist. It isn’t easy- but I do take exception to the inference that it is all that bleak and in crisis mode for all people on the spectrum.
    I applaud Mr Robison’s stance in resigning and bringing these concerns to the forefront. If not for his actions, the commentary would have gone unnoticed by many of us as would the fact that there is limited voices within Autism Speaks from people actually on the Spectrum. It seems that perhaps the group’s name should be ‘Autism Speaks, but We Don’t Listen’

  11. Maggie Ann says:

    As someone who works in the day to day trenches of severe autism. I sadly agree with Suzanne Wright. Please do not forget that autism is a spectrum disorder. In general, persons on the mild and moderate side of the spectrum have a different outlook and perspective than those on the severe side of the spectrum. Our society has yet to provide the necessary tools and training to secure a safe, happy and productive future for those on the severe side. Parents are, indeed, very worried and scared about what the future holds for their children with severe autism. This is a sad but factual statement.

  12. Judith Greenbaum says:

    I find that several of the big disability advocacy groups are out of touch with a sizeable number of their constituencies.

  13. Aspiemom says:

    Jenny says: “Stop being insulted because it’s not you or yours that is being referred to.”

    But that just the problem, Jenny. They ARE referring to us. They take those worst-case scenarios, and make the general public believe that ALL autistic people are in that small group.

    That damages those who aren’t, who are afraid to ask for accommodations at the office for fear of losing their jobs. It hurts those who try to convince their families that yes, they should be invited to the family gathering this year. It injures those families who are struggling to understand how their child will develop, and how to help that child navigate the world.

    It isn’t that Autism Speaks ignores the majority of us… it’s that their fund-raising depends on them convincing the world that we don’t exist.

    Or that we shouldn’t.

  14. peter mazure says:

    Mr.Robinson does not speak for all people with Autism. Many (like my son) do not have Mr. Robinson’s impressive capabilities. Many (like my son) are fragile people living lives of dependency, always needing the help of others to get through the day safely. Autism Speak’s represents people like my son; if Mr Robinson wants an organization to represent people with his capabilities, he should start one.

  15. Amy Landes says:

    It’s a luxury to be on the autistic spectrum and being able to express oneself! We parents of children who are more severely affected aspire to Aspergers! I dearly wish my 22-year-old non-verbal son could advocate for himself, but he never will. That’s why we parents and groups like Autism Speaks have to advocate for him. Not every day is a nightmare. My son is a joy and I am truly proud of him for the person he is. But that doesn’t erase the fact that he will need support his whole life.Congratulations on your ability to be critical of organizations whose approach and tactics you don’t agree with. You have other options. My son’s are limited, therefore I am in support of any help, by anyone in any form we can get, even if it’s not perfect.

  16. Michele Vics says:

    I’d hate to see you go, John:(

  17. Whitney says:

    There are things that Autism Speaks can do for us but chooses not to. One is give us a voice in Autism Speaks that has merits address the concerns of equality for housing and job placement. The fact spend money on programs that make quality of life for people with autism instead of searching for a cure solely. Right now the fact Autism Speaks wants people with autism to donate their brain tissue for a brain bank and lobotomize them. Show us that they are against us. When a person join Autism Speaks with autism the people there makes us feel marginalized and sub human. Yes I know the severity autism different but treating people like they are sub human just because they are different is prejudicial. Most of the psychologist goes there to do pointless studies on this groups with have no benefit for anyone when it comes to video games. There is studies need to be done yes but singling out people with autism when you don’t know the effect on nuerotypical is a waste of money. The money could have been spent on transitional programs instead of trying to cure the kids that have autism. Autism Speaks is solely focus on the kids but kids do grow up and all the help evaporates what will parents do. Parents are scared and this organization does take advantage of these well meaning parents and provides services when children are young. Instead of wasting money on cure help people where they are need in transitional services, provide training and support systems that will benefit people with Autism. Many in the autistic community feel this organization is using this condition to line their own pockets. Thus commit fraud on the parents by playing on their fears and confusion. Go look up ASAN or Wrong Planet.

  18. Brita Darany von Regensburg says:

    I am the founder/presidents of FAP ( Friends of Autistic People), and advocacy non-profit organization, and see both sides of the autism spectrum among parents who attend our seminars. Unfortunately, what Ms.Wright says that ” families affected by autism have been left to “split up, go broke and struggle through their days and years.” and
    “Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism,” is true for thousands of families where the child has Classic, often non-verbal, autism.

    Perhaps John Elder Robison could find a way to lead the high-functioning people with Autism and Aspergers to advocate for much needed services for themselves as well as for their less fortunate brothers and sisters in the autism population. This would help everyone on the spectrum. In the Classic form of autism (discovered by Kanner around 1943) the child and adult needs years and hours upon hours of ABA and speech therapy as well as sensory integration programs that are often not fully supplied by the schools and, upon reach of adulthood in the eyes of the law , at the age of 21, not supplied at all. Parents are mostly left to struggle alone as insurances do not cover the programs beyond a number of hours per year and beyond the age of 26. OBAMA-Care is now the only hope for many families .
    Housing with adjusted -to- need supports, group homes, DDS (State) services are being reduced as we speak as Medicaid does not cover therapy programs beyond a certain age either and thus parents are truly worried what will happen to their adult children when they can no longer care for them who are so affected by lack of structure that a sudden change in the days events or the sudden departure of a favorite staff/ teacher due to the cut of a School or State funded program that the parents cannot afford to pay themselves year after year causes havoc for hours. You have heard of mother -child suicides where the despair of the parent was such after having been given the run-around by government agencies . …
    At any rate it is not a rosy future we are all looking forward to and our children who cannot advocate for themselves and have talents to contribute to society but need the help of teachers and adult therapists to uncover and help build their skills so the adult child can eventually contribute at her /his level as a productive citizen … that secure and productive future is beyond the reach of most families who have children with classic autism getting older every year and reaching the end of their budgets .Special trusts will ease the burden but may not be enough as there is a lack of infrastructure of trained mentors, aides and coaches, a lack of businesses coached and prepared to give our kids a chance.

    Thus there are really two forms of autism and many nuances in between but most of our children need the help that only a nationally mandated approach to autism will be able to remedy . A national mandate should provide help for families and their children with autism adjusted to their levels of need. The more we give and support children/ teens and young adults in their struggle to acquire skills and the more we believe they, too , can be productive we will save in the long run as someone such as my daughter with appropriate supports– faded as progress/ familiarity with the job grows — will be able to help in a bakery or in a greens nursery or produce some wonderful art work. The pride of self -advocates in their wonderful abilities who can contribute at a level of a “normal” person and beyond ( the “nerds”) is unfortunately balanced on the other side of the spectrum with an extreme level of “dis”- ability in need of continuous support to reach a certain level of independence. After the child aged out of school that support can be given by paid assistants, mentors and volunteers guided by therapists who work together in clearly structured person-centered programs where the individual chooses between, let’s say, beading, baking muffins of apple pie and sensory integration to calm down from an upset. This is why we at FAP ( Friends of Autistic People) are planning a Living & Leaning Farm Academy for adult children with autism where they are able with the support of TRAINED in autism mentors to progress at their speed and to their maximum potential But to do that we need a Federal mandate…. but that is another subject for another blog….

  19. Linda says:

    I agree with Maggie Ann. As a mom of a child with significant needs, doing all I can to provide and nurture, I remain terrified everyday. I see the writing on the wall. My gorgeous, sweet child will need to rely on others for the rest of his life. I’m not whining, that is a fact. I go to the state meetings, trainings, and it looks bleak. Barring a miracle( which I would gladly take), I rack my brain everyday to come up with a plan that will provide my son with the love and tools he needs. How could there not be despair?
    I think the Autism community has to be kind within, recognizing all it’s members, and standing together. Maybe then someone will listen. Likewise, autism speaks should listen to all those affected, whether they can speak for themselves or not. So much more can be accomplished by coming together than being divisive.

  20. Judith Geswein says:

    As the parent of a 17-year-old son with severe autism and the friend of several teens and adults with moderate to high-functioning autism, I feel compelled to comment. I will always love my son just the way he is, but he struggles every day to learn basic academics and to communicate on the most basic level. When Autism Speaks talks about a cure, we are talking about helping those who suffer with severe autism and the families who struggle financially and emotionally every day. Autism Speaks is doing great research. Part of what they are doing is also about acceptance for people with high-functioning autism who can and are participating and contributing in their communities. The only persons with autism they want to cure are those who are very low functioning who face isolation and struggle every day to learn and communicate. As a community, we frequently view the needs of those suffering most as an epidemic to be cured and those suffering least as those who need acceptance. As my son enters adulthood, he is finding alternate ways to communicate and participate but he still becomes frustrated because everything is so hard for him. Some aspies I know personally are offended by the thought of a cure because they think others want to cure them, but that’s not what we want or what Autism Speaks is about. Even high-functioning persons on the spectrum frequently don’t understand social cues, so I ask my aspie friends to consider that acceptance is for all on the spectrum while cure and epidemic refer only to those who are suffering the most. Mr. Robison might also consider the possibility that others on the board have the best of intentions and that his ideas were taken seriously but may not have been the most urgent of all the ideas presented to the board. Respectfully submitted by a proud parent of a mostly non-verbal person with autism and a friend to several others all across the spectrum.

  21. Richard Farretta says:

    John Elder Robison is one of several who should have left a long time ago, Autism Speaks has collected billions of dollars and provided no help to my family or any family I am aware of who has a child suffering with Autism. I trust Suzanne Wright because she has a child with autism and is highly motivated to find answers and make sure research money is not wasted on bogus research.

  22. Rosella A Alm says:

    My 48 year old son would agree with Mr. Robison if he communicated orally. He demonstrated several years ago how distasteful, boring and often demeaning the various “therapies” that have been foisted on him through the years. I finally “got it” and never failed thereafter in a lack of respect for his choices. We live in California, and my son lives in his own home, with support staff 24 hours a day. His staff are his friends and treat him with respect too. He has his own life now, and so do I.

  23. Towanda Threadgoode says:

    To be honest, the biggest thing I took out of Robison’s resignation was the amount of patience he must have had with Autism Speaks. I couldn’t imagine being the only member of a group an organization is targeting and, for years, to not be listened to. I believe he chose the right time to leave and I commend him for his willingness to work with Autism Speaks, despite its apparent lack of effect.

  24. geeegee says:

    there is nothing wrong with the statements autism speaks made. autism remains a devastating diagnosis. as a parent and an advocate for several decades i have noted with some dismay the trend to portray autism through a sugar-coated lens. autism is a huge financial, emotional and often, physically demanding condition. this person obviously cannot see this from the viewpoint of a parent because people with autism because they often lack a theory of mind. autism is the disease du jour at the moment as it has become more visibl. there are many false treatments and prognoses out there, but autism speaks is not one of them. when there was no one else out there, the were the first. rspect, people.

  25. Sarah says:

    If one seeks tolerance and acceptance then one must be tolerant of others POVs. Different people hear different messages in Suzanne Wrights speech. While there are those HFA who shudder at the idea that autism needs a cure or treatment for that matter, Wrights own grandson Christian has serious dibilating GI issues so I can understand her appeal for help because watching her grandson suffer is her families reality. It may not be John Robison reality but it is hers and her POV is valid.

  26. Whitney says:

    POV are all valid but in some cases some are just more valid than others. If we are self determining people and by that regard we should have a say that in an organization that speaks for Autism. It may be be good for severe cases of autism but not for all. Higher the function you are on ASD the less Autism Speaks speaks for you. I am not dismissing the need to find a cure or preventive measure but it has to be done with transitional programs that benefited the population with Autism. In that there feels a little needs that are being met once a kid reaches adulthood. Where the transitional programs is the failure of Autism Speaks. We are still feeling like 2/3 less of people who are nuero typical. Unfortunately that compromise is a lost art and more people with autism are voicing there dissent for organization that is suppose to help them. You need to have something for everybody and this means people with autism should have a say in what is best for them if they can. Transitional Programs that make people with Autism sustainable instead of trying demonize us and ostracize us might be better. Helping us get the training we need for jobs will make us be more productive instead trying cure us solely. The cure is a long way in the future but you need to work on programs that will benefit the most in the daily of lives of your promoting. Our views are just as valid as anyone else but they are not treated as same with respect. People believe that autistics would not know the difference but they do. They know that people treated people differently when they are more social and have more empathy. They may not understand why that is the case but do not fool yourself we do not see it.

  27. BJ Lucas says:

    This incident has caused me to be totally disillusioned regarding Autism Speaks! I always followed them because they seemed to care about autistic individuals. But to ignore and reject the opinion of a autistic volunteer and advocated is unforgivable. I apologize to Mr Robison for this. And hope Autism Speaks finds in their conscious to do the same.

  28. Sheila says:

    I have autism.

    And, would I be better off with my autism cured? I’m convinced yes I would. And, I’m convinced people who are deaf or blind are also better off if their disability would be cured (and sometimes they are cured). That doesn’t mean people who aren’t cured of their disability don’t find ways to compensate. And, it also doesn’t mean that people with disability WILL find ways to compensate without supports. I was absolutely elated that DREDF won the case against NetFlix to get closed captioning on their streaming.

    I agree with much of what Brita Darany von Regensburg has commented below.

    I absolutely agree with the comments Suzanne Wright wrote about saying families affected by autism have been left to “split up, go broke and struggle through their days and years.”
    I agree with it because I have 2 autistic children, and that IS what I see in my own life. Their autism is to a greater degree than mine is.

    I also agree with this comment of Suzanne Wright:
    “Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism.”
    It’s true. That’s my life with my children. And the people who will bury their heads in the sand and pretend families like mine don’t exist – well it’s cruel to say the least.

    It’s no surprise. All the data we have on how people with disabilities are treated historically point to the same conclusion. The late advocate Colleen Fraser has accurately said these from: THE NEW MILLENNIUM Getting to a Better Place by Colleen Fraser (Written for People With Disabilities magazine, April 2000):
    “Every person of color is related to other people of color. Women are in families and communities with other women. People with disabilities can be very isolated and the general community may ignore their interests.”
    &
    “The progress we may think we have made is still being challenged on every level. I don’t think we have got it yet. Hold off scheduling the celebrations.”
    &
    “People with disabilities are poor. There will always be the questions about whether they really need or deserve it. There will always be the problem of how you pay for it.”
    &
    of New Jersey back in 2000 -
    “Instead of spending the money on something that will benefit all of the citizens of the state, we are supporting this lawsuit to avoid meeting ADA requirements.”
    &
    “Ethan Ellis once told me that the reason that I was so uncomfortable with Bob Nicholas, the former director of DDD, was that he was an incrementalist. I have since realized that change happens that way—gradually. I don’t have to like it.”
    &
    “A social marketing consultant from Canada once asked me if I was willing to wait for ten years for the changes I want. I am not willing to wait for ten minutes. I will work for ten years, though.”
    &
    “To sum up, I don’t think that we will be much further along in 2050 than we were in 1950.”

    From my perspective, quit pretending the truth isn’t the truth. Suzanne Wright wrote the truth. Just because it’s not the truth that John Elder Robinson has experienced with his autism, doesn’t make it any less the truth.

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