John Elder Robison Leaves Autism Speaks Amid Controversy

John Elder Robison

John Elder Robison

Author John Elder Robison has resigned his post as a member of the Science and Treatment boards for Autism Speaks. The author of such books as Look Me in the Eye: My Life with Asperger’s and Raising Cubby states that he cannot support the organization due to their tendency to portray autism in ways that are offensive to individuals with the diagnosis.

His resignation letter specifically mentioned a video titled “I Am Autism,” which featured pictures of children with autism along with a menacing voice-over saying,

“I am Autism . . .I will plot to rob you of your children and your dreams.”

He also referenced a recent blog post by Suzanne Wright, co-founder of Autism Speaks, calls autism a “crisis” and a “national emergency.” Robison’s response is as follows,

“I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents, or society, or genes to be eliminated. We are people.”

He concedes that individuals with autism do have challenges, and that they and their families need support. His issue with Autism Speaks lies in the way they portray autism to society, along with their failure to include people with autism in positions of power within the organization. He says,

CC BY-NC-ND by iFireDesign

CC BY-NC-ND by iFireDesign

“Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target. The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community.”

He goes on to say that the organization’s number one priority should be people with autism, not their parents or grandparents.

The Autism Society responded to Robison’s resignation as follows,

“The Autism Society . . . does not believe nor accept the description of a person with autism as described in a recent Autism Speaks blog. . . To consider a child or adult with a disability as a burden as some do leads to stereotypes that are damaging and insulting to so many of us.”

Robison followed up on his Facebook page with the following post,

“There has been a tremendous response to my decision to resign from the Autism Speaks. While I am touched by the support people have shown me, it saddens me that folks are celebrating my decision to abandon my efforts to steer their science in a constructive and beneficial direction.”

He goes on to say,

“We have a number of good organizations fighting for rights, but none had anywhere close to the resources of Autism Speaks, especially in science. Will they wake up and welcome autistic people into their leadership? I hope so. If it does I will feel my service was worthwhile.”

          

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Laurel Joss About Laurel Joss

Laurel Joss is a freelance writer with a Master’s Degree in Early Childhood Education. She worked as an RDI® Program Certified Consultant and has published articles in Autism Spectrum Quarterly and on her blog www.remediatingautism.blogspot.com. She is a mother to two children, one of whom is on the autism spectrum. You can also follow her on https://twitter.com/speaking_autism and https://www.facebook.com/speaking.autism.ca

Comments

  1. I am the father of a 17 year old son with severe autism disorder and intellectual disability who also suffers from seizures. He almost died this spring in an adverse reaction to his seizure meds before being sent by ambulance to the local Emergency and six days in the ICU. Our son Conor has engaged in many of the self injurious behaviors described so honestly by Suzanne Wright. A number of years ago he left our house unnoticed and crossed a busy street oblivious to the auto traffic that had to stop to avoid hitting him. A good member of our community stopped and took him in to a local convenience store and called 911. I was able to bring my son home safe but never forgo the lesson and our family lives the 24/7 alertness that Suzanne Wright described. I applaud her for speak out honestly. John E Robison has no professional autism expertise. He is extremely high functioning and has no personal knowledge of or experience with severe autism realities faced by persons with severe autism and family members and others who love and care for them. Robison’s self inflated assessment of his ability to provide proper scientific direction is not shared by me and many other parents who speak for our children who can not speak for themselves. Mr Robison’s resignation is indeed viewed by me as a positive step forward that will allow Autism Speaks to seek proper treatments and cures for autism disorders. http://autisminnb.blogspot.ca/2013/11/an-excellent-week-for-autism-advocacy.html

    • @Harold L — I am the mother of a 17 year old daughter who is autistic, and I am on the autism spectrum as well. I agree with John Elder that the language is offensive. Why can’t we work together for science and answers without being awful to anyone? Instead of saying autistic persons are a burden, why not just say life-threatening seizures are awful, or a tendancy to wander off is dangerous. Deal with problems; but don’t bad-mouth persons. Life isn’t ideal, but when someone has an actual problem (seizure, for example) couldn’t we find ways to help and support that person and their family without being insulting?

      @TLS — “I’m not going to loose (sic) sleep… grade 10 education… ” Obtaining success on one’s own terms despite difficulties is nothing of which to be ashamed.

      • Susan Dodd says:

        Well said! I totally agree with you! People are people and each one deserves love, respect, kindness and courtesy regardless of whatever disability they may be challenged with! I was raised in an age when those very things were taught as the means to over-coming difficulties & I still believe that to be true! Thank-you for your thoughtful & kind eloquence for those of us with more challenges before us than others may have! God Bless!

      • Alison Hunt says:

        I agree that some types of autism are more challenging than others. To paint a brush so broad with the comments that were made was in poor taste. I agree with the posters above that the behaviours or some of the symptoms should be addressed individually with an adjective that fits. There is no need to be rude or to make people with autism feel “less than,” any in way shape or form. A change in leadership should be made at Autism Speaks with people who have autism making up at least 50% of the executive. It only makes sense to get the perspective from people who live with it. Now is the time to see if Autism Speaks steps up to the plate and recognizes their faux pas and addresses some of the issues at hand.

    • I have a daughter who is autistic and I am as well. I agree and understand why John Elder made his choice. I like him and many others don’t like it when people that do not live on the spectrum say that they want a cure for it. I do not think that there is anything to cure. We all are human beings! No one person thinks or feels the same way. I am considered to be high functioning, but that doesn’t change the fact that because I am high functioning I can’t identify with others who are not. I wasn’t always as good at “hiding” my “odd” or “unacceptable” social behaviors. I do wish that we could all work together and help one another!! I would love for “all” of the human race to be able to accept each other and all of our unique ways. I am a parent that worries daily about my daughter. She isn’t at the functioning level that I am, so I can say that I know what it is like from a parents view and from someone who lives with Autism. To make the comment that Mr. Elder doesn’t have any professional expertise! I beg to differ!!!! He is autistic!! Whether or not he is low or high functioning doesn’t matter! The best person to teach about living and dealing with the issues that autism brings is someone with autism. He was trying to protect those of us that are on the spectrum that either can’t speak for themselves, or don’t have a way in which to be herd. In reading his book, it helped me to know that I wasn’t alone when I felt that I was. Please? Everyone! Don’t fight? Let’s try learn about and understand each others differences! Nobody is any better than another. We are all the same…we are all human.

    • Orhan Kaunis says:

      Unfortunately very few people seem to know what they are talking about here. The word “spectrum” is added for a reason. Seems people here have views that are disconnected from each other. Of course people are being too subjective which invalidates anything they have to say. What a worthless blog.

    • Chromesthesia says:

      If Autism Speaks is so useful why don’t they have resources such as alert systems to find missing autistic children as soon as possible? They have all of this power and money but they’d rather represent human beings as an inconvenience. That is not helpful!

    • Whenever I want to make a comment on your website, Mr Doherty, there is no one home. I never get a reply or it never gets published. Autism Speaks started because of Suzanne Wright’s grandson. I believe he was on the relatively rare non verbal part of the “spectrum.” Because of the all the publicity about autism and all the diagnosing, the other end of the spectrum wanted their voices to be heard. I am really not offended by what Suzanne portrays some autisms to be because I understand personally what non verbal autism is like. The truth is I am not as interested in cures because it has been years of the same hopeful discoveries and meanwhile our young man has grown up. I will admit that when he was little he would run in traffic, or have temper tantrums, stim constantly etc but he was also funny, loveable, and dignified. Now he is 18 and I can not describe the pride and admiration I have for him. I am sure you feel the same about your son. What we need more than anything now is for him to become as independent as he can be. He will always need help. We should all work to make sure that help is out there. Jobs, housing, transportation and recreational activities just as he has at school. They are closing down the autism communities in the name of in inclusion. Where will they live? On the streets or section 8 housing where they may be vulnerable? He needs to feel proud of himself just like anyone else. Can Autism Speaks or Mr R obison or Ari Neman help with that? What about the president or congress? No, they don’t care.

  2. The interesting thing here is that so many were offended by Suzanne Wright’s piece because it wasn’t what autism is for their families and they felt she presented it as such. We can see from Harold’s comments that some people do experience autism as Suzanne Wright describes it. Yet, in Robinson’s resignation he repeatedly uses “we” as if all people with autism were in complete agreement with his objections and he is the self appointed spokesperson. Hypocrisy anyone? I’m not going to loose sleep that a self-described neuro-diversity advocate with a grade 10 education is resigning his position on a ‘science panel’. Let’s be honest, he was only there as a token because of his high profile position to begin with. Is his son going to join his father in protest by no longer accept funding from AS for autism talk TV? Somehow I doubt it.

  3. Mandy Granado says:

    Words can be damaging…..people feel that Ms. Wright’s piece was honest and yet she didn’t take into consideration the effect her words had on this community. My daughter who is ten with autism has been portrayed as a monster with horrible behaviors like our children are malicious but she is the opposite. It is pieces like Ms. Wrights that give people that impression of our children. It is unfortunate that people have to step down that could have offered a lot of input and help to the autism community

  4. Dear Mandy Granado: YOU used the word Monster with reference to your child, Suzanne Wright did not.

  5. Lisa says she is autistic, obviously high functioning enough to communicate, and argue, on the internet. She claims that being, in Robison’s case a very high functioning autistic is enough to provide scientific autism expertise. NONSENSE.

    Lisa also says high functioning or low functioning autism, it doesn’t matter? NONSENSE, actually that is OFFENSIVE NONSENSE. My son has often engaged in serious self injurious behavior and has limited communication skills and understanding of the world. He also like many with severe autism disorders and intellectual disability suffers from seizures and has twice been sent to Emergency care via ambulance in the last year. He also was sent a 3rd time as a result of what was diagnosed as an adverse reaction to his then seizure med. That required a 2 week stay in hospital including 6 days in the ICU.

    I have had enough of the ill informed, self serving commentary on this sight from “joy of autism” ideologues to last me for a while. I will check in to read the Neurodiversity ideological propaganda again in a few days.

    • Amen

    • What most autistic people are sick of is that people like Harold say that the high-functioning can’t speak for the low-functioning, but when a person who is not themselves autistic but rather is a family member speaks for autistic people, it’s supposed to be gospel. The fact that we have an opinion you do not agree with does not invalidate that which we do have in common with the low-functioning. We might take you more seriously if you actually debated us on the merits of the argument instead of shutting down every argument with “you’re high-functioning, you don’t know what you’re talking about”. By the same token, I could say that because you’re not autistic, you don’t know what you’re talking about. I won’t say that because I don’t actually believe it, I’m just mentioning that to make a point.

  6. I disagree with Harold. As someone who works in the field of special education I can tell you that I work with autistic children that are on the low functioning end of the spectrum to those that are on the high functioning end of the spectrum. I think the words “high and low functioning” are offensive to you personally. These are words that are used in children’s IEPs. I’m sure you want the services that school provides, what words would you suggest educators use in place of “high functioning” and “low functioning”?

  7. Despite its many benefits, a major problem created with the new DSM has been the tremendous range and diversity of Spectrum Disorders. Diagnosis is meaningless without evaluation and treatment highlighting individual strengths and weaknesses. Our only “crisis” was our confusion in understanding why our son had so much difficulty, socially. Once we received accurate diagnosis of Asperger’s (after 3 therapists ), along with an excellent road map for tantrum behavior and lack of social skills, in addition to a 504 plan with our school, we were able to celebrate his many strengths, and watch him soar, academically, and now socially. Even still, I’ve had educators, upon hearing about a diagnosis of Asperger’s, ask me if my son requires an “activity vest”, before even asking about his abilities. I can only imagine the pain of watching your child with self injurious behavior or significant communication problems. There is such significant variation that a Spectrum diagnosis can be confusing, and lead to inappropriate reactions and treatment. We must demand better from professionals in the field with respect to diagnosis, individual treatment and education of the community on Spectrum disorders.

  8. I have an enormous empathy for the people who have some of the more severe forms of autism, but as someone on the higher end of the spectrum I have to agree with John. I think we should be trying to find ways to work on communication with those who cannot speak. Many “low functioning” autistics, if helped with adaptive communication technology can find a voice. I do not make light of the severity of their cases, but I also do not believe that neurodiversity is a bad thing. I have autism. My husband has autism. And we are people. We have our troubles and we have our joys. One of the diseases with most consistent co-morbidity with autism (whether high or low) is depression, and much of that stems from being seen as autistic first, and a person second. That is not what I want for my future children if they have autism. Being different is hard enough. I am a person. And I have autism.

  9. Jaunita Smith says:

    As the mother of a high functioning 10 YO boy with Aspeger’s, I can’t help but be reminded of the following: “When you meet one child with Autism, you’ve met one child with Autism”. Yes, there are simularities but again not two children with Autism are the same. With that said, I can understand points on both side of the isle. However, I do not agree with, “I am Autism . . .I will plot to rob you of your children and your dreams.” I do not feel as if my dreams nor my child’s have been robbed because of Asperger’s. I wanted a healthy child, I have a healthy child that is excelling in school and has become one of the sweetest children one could have. We are not trying to change him, we are changing ourselves and how we approach things now. What I want for my child is to be happy and follow his dreams, not my dreams and no diagnosis of Asperger’s can stop us. :-)

  10. I’ve included self-portraits of artists on the spectrum in our blog about this. http://the-art-of-autism.com/autism-speaks-aut-to-listen-to-john-elder-robison/

    • Roberta Hill Roberta Hill says:

      Debra, very clever(in a good way) including the self-portraits. They are amazing. Thanks for sharing.

  11. Everybody here is making valid points based on where they are and the things they have dealt with so far in their Autism journey. I’m interested in seeing where Autism Speaks goes down the line. As big as they are they are going to have problems communicating effectively to people.

  12. Lisa Lee-Johnson says:

    The problem here is that most folks think it’s necessary to call something “bad” in order to effect change. I agree with Suzanne Wright that autism can be enormously challenging for the parents and caregivers. I agree with John Elder Robison that seeing the autism as bad, as a disease, is the opposite of helpful to the autistic individual. Both points are valid! Suzanne writes eloquently of the real experience many parents are going through. However, if we hate something, we push it away, and aren’t able to work on it, look at it, perhaps make changes to the parts of us that everyone agrees are challenging, and celebrate the parts of us that we like and want to keep. I think this relates to what John is saying, that when Autism Speaks claims that autistic people are defective, diseased, such messages are destructive. I think Suzanne is well intended, and I applaud her sympathy for other parents of autistic individuals, and her reaching out for governmental support. However I agree with John that the way autism is portrayed, as a disease rather than as a challenge, is unhelpful to both caregivers and autistic people.

    • And yet Autism Speaks spends a large portion on research, as though there is a cure for Autism.

  13. In discussing autism we should not have to be reminded to have respect and dignity for all. One discussion which may be needed in your advocacy is adults with ID and autism. It really is hard to understand if a non speaking individual actually has ID since he seems to understand but does not choose to or want to bother with things he is not interested in. Anyway, when these children are young and have good parenting and with the best education the future seems quite bright. Then reality strikes. No longer ABCs and math etc but now Life Skills training. What type of jobs can he do and want to do? Many really are capable especially of doing repetitive or even intricate jobs. On the other hand, many say that “workshop” jobs are not inclusive and demeaning. States are closing them down, but, working at a sheltered workshop can also be positive experience for a small percentage of young adults who feel they could not otherwise cope with the stresses of the outside world. They like sameness, security that comes with having a job coach. Somewhere where he can take pride in his work even for the few meager dollars he earns. http://www.dispatch.com/content/stories/local/201… I am hoping that in the future we can see more discussion on this matter since adulthood does come. I am sure that 90% of people with autism have the opportunity and motivation to work inside the community but a small minority do not. Please advocate for job opportunities and speak about it on your website. Everyone deserves a good and productive life.