An Open Letter to Suzanne Wright, Co-Founder, Autism Speaks

Yesterday I had the privilege of attending an event at the White House celebrating the 50th anniversary of President John F. Kennedy signing into law what later led to the Developmental Disability Assistance and Bill of Rights Act.  In light of this historic anniversary, I feel compelled to comment on your recent blog post leading up to Autism Speaks’ first National Policy and Action Summit earlier this week.

Back in 1962, President Kennedy’s Panel on Mental Retardation* called for our country to “combat” mental retardation, “[exploring] the possibilities and pathways to prevent and cure mental retardation.”  Here we are, 50 years of progress later, and your words connote the same sense that we are at war, suggesting that given the prevalence of autism we should call out the “Army, Navy, Air Force and Marines.”

Over the years, though, we have learned that war is no longer a useful metaphor to invoke and apply in the disability community.  People with autism, or for that matter other developmental disabilities, are not victims of the predations of some evil actor, nor are their mothers, fathers, sisters and brothers.  Instead, we appreciate, as stated in the Developmental Disabilities Act, that “disability is a natural part of the human experience.”

Unfortunately, your description of children with autism and their families is polarizing and divisive, creating rifts within a community that can ill afford it in these perilous times.  Characterizing people with autism and their families as victims suffering from a dreaded affliction ignores the diversity of the community of people with autism, as well as their creativity, perseverance, adaptability, resilience, and overall beauty of their human spirit.   It belittles the many who, rather than seeking to be cured, are striving for their human rights to be accepted and respected. It is far from reality for many people with autism whom I know and who are involved in our work.  All are deserving of dignity and respect.

Certainly, it is true that many individuals on the spectrum, and their families, face serious challenges on a daily basis.  The current system of social insurance and social services and supports fall well short of meeting the needs of too many who are in need of assistance.  To confront this reality and achieve progress on behalf of and with people with intellectual and developmental disabilities, including autism, the only successful path forward is one which unites, rather than divides.  We all must work together.

As you may be aware, The Arc is the nation’s oldest and largest nonprofit organization advocating on behalf of and serving people with all different types of intellectual and developmental disabilities.  Throughout our network of nearly 700 chapters in 49 states, The Arc serves and advocates on behalf of and with many individuals with autism – and we know that more can and should be done to ensure that people with autism are included in the community and have access to the services and supports to achieve their goals in life.   Solutions to the challenges people with autism and their families face are possible.

The Arc’s experience, over more than 60 years, makes clear that our power to achieve change is greatest when people with intellectual and developmental disabilities, their parents, brothers, sisters, professionals, colleagues and friends are all at the table.  Our voice is even stronger when we make it a priority to listen to what people with developmental disabilities have to say for themselves about their own lives.

Now is the time to come together – people with and without disabilities, including autism – to determine where we want to be tomorrow, next year and 50 years from now.  The rhetoric of 50 years ago has no place in today’s discourse.

Sincerely,

Peter V. Berns
Chief Executive Officer
The Arc

*The outdated term mental retardation is used in this context because it is the formal name of a panel in existence 50 years ago.  Today, the accepted terminology is intellectual and/or developmental disability.

43 thoughts on “An Open Letter to Suzanne Wright, Co-Founder, Autism Speaks

  1. And how dare you, Mr. Berns, belittle and trivialize my, and my family’s bad experience with my sister’s autism, in the name of happy-clappy political correctness? The pain that her condition inflicted is real, and devastating. I know it sullies the world view that you are trying to promote, but there it is: reality bites. No all people with autism are not like my sister, but she, and my family, exist, and that should matter.

    • I’m autistic. It’s not always a cakewalk. But none of us, including your sister, deserve to be described as missing, ill (beyond ACTUAL illness), preventing our families from “living”, who need a special town for us all.

      People that you don’t consider like your sister are never given the time of day, and most autistic people, your sister included (whether she can type/point/speak or not), don’t get to communicate their own thoughts without people like you shooting them down.

    • Thank you for your comment, it’s important to hear from all perspectives in the autism community. You and your family absolutely matter, and just like any other issue in life, your experiences shape your perspective and it should be treated with dignity and respect. As we explained in our post, it is true that families face extraordinary challenges, as you describe in your family, and lots more needs to be done. But the point we were underscoring is that we all need to work together if we are going to succeed! Thanks again for weighing in.

      • The arc,

        One, the comment you are replying to here would be illegal in a world where my rights are as respected as much as those of normies. It is nothing more than an attempt to erase us.

        Blair, HOW DARE YOU!

        I am homeless. I suffer daily with borderline PTSD. And I am here to tell you that attempts to make me “not autistic anymore” will be met with violence.

        Second, “with autism” is not on, the arc. It separates us from what makes us us and aids ignorance like the above. I will not suffer to have anyone think of what has shaped my consciousness for decades as a separate entity to me. I am not a hamburger. I am a person. I am autistic. If you could only experience what I feel at the sight and sound of separationist language…

        Finally, this is not a debate. There is only one right answer here. The autistic wish to live without the threat of being removed and replaced by things to the likings of others. Anyone who disagrees with that is potentially a murderer and already a fraud of the worst kind.

    • I, myself, am Autistic and I don’t feel my experience was trivialized in any way. In fact, my *own* experience of self was acknowledged here in a way that is (sadly) quite rare.

      This is a call for inclusion, compassion, and respect. I’m not merely something that happened to others. I’m a full human being with every right to exist. And I do exist. I’m right here.

      No human being should be made to feel like a burden or, worse, an absence. There’s nothing “happy” or “clappy” about the prejudice I experience on a daily basis.

    • I feel sorry for your sister, if this is all you see her as. You sound full up to the brim with your own perceived sense of inconvenience – no one here is saying that autism is sunshine and roses, including me. I have meltdowns. I have nonverbal days. But my family has never made any comment on a public website basically saying my existence only causes them pain. That is what you are saying here – that there is nothing good about your sister’s life, that it’s all bad, that you cannot see past the disability to the person inside. What a terrible attitude, and what a dehumanizing way to talk about a member of your own family.

      Shame on you, Blair Burtin. Shame on you.

      • As a professional in the field, as well as a mother of two children (one now an adult) you completely missed the point that ARC CEO was trying to make.

        I am personally, and never have been a fan of Autism Speaks. First, for that fact that they receive MILLIONS of dollars and those of us service agencies don’t receive ANY to assist our community facing the challenges of living with Autism or any other Developmental Disorder. Their CEO alone makes more money than anyone can imagine and for what? Ordering more research. At the end of the day, Autism Speaks has had it wrong since inception. There is no WAR as the only soldiers are those that can not fight for themselves most of the time. This whole rhetoric is a waste of valuable time that the professionals that serve our differently-abled community could be using to do just that- SERVE.

        So Mr. Blair, thank you for sharing your view, but maybe re-read what the gentleman was trying to say in the first place.

        We agencies NEED (not want) HELP! Want to know how much I make? Zero. I do it because I have the skills to assist my community. It bothers me that the ones that do the most complaining sit on their thrones and grumble about what’s not being done. Everybody can do something. Thank you ARC for NOT being Autism Speaks.

  2. Wait. Berms says that all with developmental or intellectual disabilities need help. That it is not a “war” and if it were certainly not one mankind will ever win.

    Autism is hard. Fragile x syndrome is hard. Look, I could go through a laundry list of syndromes here, from Downs on. To look at them all and provide respect for all is what us needed, not this compartmentalizing of this versus that.

    Because the ones that get the press get the money. The ones that don’t get press get little support, and the work and studies and community assistance that are needed don’t develop, the governmental assistance isn’t there. So one group (the one with the wackiest ideas in this case, “immunization so caused this” foolishness supported by Hollywood) should control the only organization that works for all of us affected by the many causes of developmental disabilities?

    I don’t think so.

  3. I think the thing that rankles many of our family members with autism is the position that Autism Speaks takes that demonizes the conditon. Yes is can be very hard and even scary at times. We all manage the best we can. What we DON’T want to do is make our loved ones feel like they are defective or like their birth was a mistake. People with autism are a normal part of the social fabric.

    When people use the language of Autism Speaks todescribe people with autism it is a REJECTION of them and their humanity. If you really love someone with autism you respect them for who they are. No buts, no what ifs. Autism is an immutable trait like my son’s blue eyes and I would never, ever use any kind of language that would make him think that he is sick or defective because he has blue eyes…

  4. I’m all for realism, but how realistic is to say that autistic people, high, low and every functioning in between are demons of hell who suck all the light ,air, and happiness out the room with our very presence. You are thinking Dementors. They are from the Harry Potter books, and they do not exist. They are imaginary. Sunshine and rainbows are real. They are *periodic* phenomenon, but they are real– and have scientifically proven occurrences. Maybe not *every* moment with me and others like me is sunshine and rainbows, but I was under the impression that monsters were as imaginary as unicorns. What you have left is autistic human beings. And we *do* exist.

  5. Another poignant post that shows AS they have to change course. Their voice must not overpower those of self advocates and parents who are working WITH their child and NOT AGAINST AUTISM. We are here, too. It is not a war. It is life.

  6. Peter,
    Thank you so much for your post. It makes me so proud to be a member of The Arc for so many years and the former president of my local chapter Arc Westchester. I have a 13 year old son, Aaron, who many may call “low functioning” he has terrible behaviors at times, can be up all night, cannot tell me what is bothering him, and can scream for hours. It is extremely devastating at times and it has caused my husband and I and his siblings, at times, great sadness and isolation. It has also been an incredibly difficult financial burden since Aaron requires 1:1 care. HOWEVER, I do not feel punished, I do not feel at war, and I do not feel that anyone owes me anything. I do not look for a cure, but rather look to create a world where Aaron is included and can be happy. While I could go on and on about the bad and the devastation as Ms. Wright and Blair Burtin in (the comment above) seem to want to do, I would like to tell you instead the good Autism has brought into my life and the hope! Aaron is a pure soul and has taught our family what real love is and that we can get through anything. It has shown me that I had a strength I never thought I had. His siblings are amazing, warm, generous, charitable people that have a compassion well beyond their years because of their brother. We have learned to advocate for Aaron and know that we are his champions and are driven to help hime have a happy life. Aaron makes strides every day, and his small achievements are celebrated. When Aaron looked at me for the 1st time a couple of years ago and told me he loved me without me saying it first…..I felt as though I had won the lottery. This boy, who I thought I could not touch, understood from my eyes, how much I loved him. While I could complain that he may have been vaccine injured, or search for a cure, instead I will fight to make sure the services and supports that Aaron needs to have a happy life remain in place and are expanded. We are grateful for the services we receive because of the advocacy of organizations like the Arc that allow us respite and an incredible education system, This is what the Arc strives to do. While it is not a perfect system by any stretch of the imagination, it is there because of the parents and organizations like the Arc that have fought for children like my son. Arc will ensure that we keep our precious services and fight for the expansion that is needed. Arc is not looking to “cure” they are making sure my son has “care” “respect” and “happiness”. Because of the work that the Arc does, I know that one day when I am no longer here, there will be a world for my beautiful son. I want to thank you for your organization’s work for all of us parents and family members that are busy coping and making a life for our children. Your work with the government and others will allow our services to be sustainable. Thank you for your words and thanks for what you do. I hope Ms. Wright, and Blair Burtin can join the Arc and stop complaining and start building the future for these people with Autism. They are growing up and we need to ensure that the world is ready!
    Take care Peter.

    • Thank you Peter for your post. As a mother of two boys with Autism one at each end of the spectrum, I personally feel that we should focus on how families are going to survive this sometime difficult problem and not finding a cure. I cherish every word my more severe son says. I was once told by a very well known slp at the Kennedy Krieger Institute that he would never talk, but God and Brendan have proven her wrong. Move over world people with Autism and other disabilities are here be prepared to include us in society.

  7. I have been a part of The Arc for many years, and have a 20 year old daughter who has autism. I have served at State and Local levels, and joined The Arc because of the National Lobbying that they do for people with ALL disabilities.. They realize that no one disability takes or needs more than another, and that all people with disabilities have a right to be a part of our society, not just here in America but around the Globe. I can’t begin to tell you the extreme life we have lived for the last 20 years. I would not want this life for anyone, and I understand that there are many degrees of Autism.. Those families that have high functioning family members may not even be able to relate to those families of ours that have an extreme child with Autism, where everyday could possibly feel like the last. I think that what so many of us want is to have help, and GOOD services with our children.. We don’t want a National plan..My daughter is not missing, and she is not meaningless.. She is who she is, and we want her to be happy, and to have the best life possible,and with that comes a need for special services, but not a community somewhere off by itself.. Shame on Autism Speaks for trying to speak for all families with Autism..Not a happy mama here.

  8. This is just beautifully put, thanks so much for wording this in exactly the right way and putting the rhetoric of Autism Speaks in the proper contect, e.g. “The rhetoric of 50 years ago has no place in today’s discourse.”

    What’s most frustrating is that many parents agree with the statement made by Suzanne Wright…and that’s okay. The goal is not to silence one group…in other words, the goal is not to make Suzanne Wright’s mistake and present a monolothic, rigid view of autism. Rather, the goal is to make sure that the diversity of experiences and voices are represented.

    I don’t see inherent divisions in the autistic community…I just see variety. A variety of minds, hearts, viewpoints and lives. As Jess from Diary of a Mom has perfectly stated: “There is no one autism”. And what the community deserves are support organizations that respect this diversity.

    Part of the problem may be that it’s just a little too easy to paint autism as the “villain”. I think that likely brings in the contributions. But again, it’s easy. Now is a time for the harder work of finding room for the large, vibrant community that doesn’t fit within the brutally narrow worldview of Autism Speaks.

    Parents who agree with Suzanne Wright: their voice matters…but they have a huge megaphone with Autism Speaks. This controversy just proves that there are many other voices that deserve to be heard…that have to be heard for any true and beneficial change to be possible.

  9. This is the kind of response from a national leader that I have been hoping to see. As a parent, I am thankful. Mr. Berns, I appreciate what the local chapter of your organization is doing in Nebraska, just wanted you to know.

  10. Thank you for your beautifully written response to Suzanne Wright’s letter. You articulated it in a way I hadn’t heard before, and I appreciate your clarity of thought and your compassion.

  11. Thank you, sir. I will be looking for ways to support my local Arc chapter – financially and otherwise!

  12. I am the autistic mother of an autistic son who works with valiant patience every day to improve his speech. My respect for his hard-won skills, prevents me from speaking for him, but as for me, someday I hope to shake your hand. Experience with my son suggests he would be more inclined to hug you fiercely, or literally sing you a song of praise, but then he always has been more eloquent than me. You have my admiration. And Sir, if an when when I can effectively convey the jist of your letter to my son, I’m betting you’ll have his as well.

  13. I appreciate the good intentions of the Arc’s director. If a parent is seeking ways to ameliorate the effects of autism through nutrition or supplements or alternative medicine, I don’t think they are disrespecting or hating their child. The neuro-genetic counselor at Kennedy Krieger Institute in Baltimore, MD said genetic testing revealed that my son has an NRXN1 gene deletion. People with this deletion may have autism, intellectual disability, schizophrenia, low muscle tone. Some people with this deletion are “normal”. Others have 1 or more of the conditions above. She said that something in the environment can turn these conditions on. Please also go to the Johns Hopkins Bloomberg School of Public Health to read the actual package inserts for vaccines. There are several that list autism as an adverse effect. Not one parent I know (including myself) who has tried any possible treatments for ameliorating the effects of autism hates or disrespects their child with autism or any person with autism. We’ve all been in the trenches, advocating and lobbying for better treatment of our kids from their schools and our society, including our neighbors and families. The Arc director’s intent to be a mediator and a peace-maker is admirable. I absolutely respect the self-advocacy of anyone with a disability who can do so and who chooses to do so. I would appreciate the same respect for being an advocate for my son and for his friends and classmates. Even the court system recognizes the good intentions of individuals who support others as a third party, “friend of the court”.

  14. Thank you for this message, Peter. I have always appreciated The Arc’s consistent message that we must all work together. I have brought this message with me to every IEP meeting for my daughter–and this message has allowed us to successfully include our daughter (with significant disabilities) in school and on school sports teams fully from grades K-10 (she is 15 years old). This is a positive and productive message and it works! If things fall apart for her at school–there always is a way to fix it–Who isn’t doing their part to work with us? (Because we are supposed to be a team.) Your message is powerful and important. Thank you for your work!! Our daughter has a great life because of the vision and leadership of The Arc.

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  16. I would like to point out here two things:

    One, there are plenty of autistic people chomping at the bit to speak for themselves. If you are going to say “I have a… with autism”, spare us. My feelings towards my familial units are such that anything a parental unit has to say in the matter is automatically irrelevant. And, frankly, insulting by default.

    Second, separationist language (that is, “with autism”, “has autism”) is hate speech. It actually stirs my PTSD symptoms. In some cases, enough to make me visibly convulse. Maybe you like thinking of an indelible characteristic of my person as a separate entity. I, however, do not like it and have no wish to let you do so. I never say “has blackness” for a reason, after all.

    • The Arc is promoting people working together to create great lives for people. I find your comment, “Anything a parental unit has to say in the matter is automatically irrelevant” very contrary to what is needed for children. Who is supposed to speak for those without a voice? My daughter is 15 years old. She cannot speak and due to low muscle tone cannot use any formal communication. And yet you are saying my opinions are irrelevant? I have been her voice and the translator of her behaviors–demanding that people treat her with dignity and respect. She communicates with me through her behaviors–and I share with the world what I learn from her. I live this experience too–and yet people have discounted my voice because I am not the one that is labeled. I have advocated for her in every arena–doctors, teachers, therapists. She needs my voice and my opinions now. Her experiences are important–and I am the closest person to her. No one else can speak for her simply because they have the same label. I need the community to embrace her and me (her mother). Every voice of compassion, support, and understanding needs to be heard–that is the point. Everyone matters and is important to coming together to solve problems and to create better lives.

    • Mr. McIntosh,

      I hope you will be willing to accept the support of parents who support the work and voices of self-advocates. I do have an autistic daughter who I do NOT believe is lost or missing or whatever else Mrs. Wright may say. We continue to encourage her to find her own voice and advocate for herself. I try mightily to not use separationish language, though I know I occasionally fall into it due to past usage.

  17. Here is the fact of the matter: Each person is an individual, regardless of disability. Some of the responsibilities and experiences we have as parents can and may be very challenging for us as adults but are likewise very challenging for our family members, the child who is having trouble communicating as well as siblings. We should not be pointing fingers at each other but instead showing the world GRACE and Kindness. Helping each other. Many of us know how it is when things get overwhelming. We need to try to be a helping hand when we can to others rather than passing judgement. Autism Speaks has developed some very nice materials that have been helpful to families and have raised funds for some non profit grants. The reality though is while seeking a “Cure” we need to find means for families who need appropriate treatments, therapies, and services to have ACESS to them. In a state like IL where 2/3 of the population lives in 8 counties the disparity of services needs addressed.
    Likewise the comorbidity of mental health and Autism needs to have better treatment and supports, so that families and individuals have choice. currently choices are limited if non existent downstate.
    Please as challenging as it is always look for the individuals strengths they have them. As exhausted as you might be encourage those strengths and most of All LOVE Them. :)

  18. Thank you for speaking out on this matter, on behalf of the Arc. The cross-disability solidarity is much appreciated. The “autism community” — by which I mean not just autistic people, but the (overwhelmingly non-autistic) population of parents, family, and professionals working with autistic people — is far too siloed, far too sparsely interconnected with the larger disability community. The controversy around Suzanne Wright’s op-ed piece and Autism Speaks’s history of similarly regressive media and public relations activity is one area in which Autism Speaks is problematic, but another is the extent to which it perpetuates the disconnect with the larger disability community. As we move forward from this episode, let’s all make more of an effort to grow and leverage those interconnections.

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  20. I think you are missing the point of Ms Wrights speech. Some children with autism ARE sick. Some kids with autism have serous medical issues such as underlying mitochondrial dysfunction, chronic GI issues, inflammation, seizures so Ms. Wright is correct in seeking treatment to end their suffering b/c these children truely do suffer. Political correctness should not stand in the way of treating that subset of children with autism who desperately need medical help and that is what Ms. Wright is appealing for. Her own grandson has chronic severe GI issues. Not treating these kids is an injustice. Acceptance is all well and good but help the children who need it.

    • Thank you, Sarah. I agree with you. Some people with autism or autism-like traits do suffer physically with health issues. They absolutely deserve effective medical treatment. No one individual or group gets to “own” a disability and dictate how people with that disability access medical care.

    • I think much of what autistics are feeling is right there in your comment:

      Some kids with autism have serous medical issues such as underlying mitochondrial dysfunction, chronic GI issues, inflammation, seizures…

      those things are not autism. They often are co-morbid conditions that hopefully can be addressed, but those medical issues are NOT autism. Mrs. Wright is saying those issue ARE autism and I think there are many autistics who would disagree.

  21. No Sir I must disagree. For if you take a moment and even consider two -three years of the data and add it on to our current numbers we will have a national emergency. Then Sir you, we will need to call in the National Guard, Army, Navy and Secret Service, CIA

    Dear God Sir these are our babies and mine are grown and no country will be able to support all their needs. Less children will be born because your granddaughter due to lack of males to marry most likely won’t marry
    I one was offered your position I did not feel qualifies at that time they did not care. Now I know why

  22. What a gracious response and wonderful piece of advocacy!And it brings to mind that the ARC and people with intellectual disabilities have made *great strides* on behalf of all of with disabilities for *many years* now. Insurance reform, Special Olympics, Welcome to Holland, and many more contributions besides, in inclusion and community living.We in autism communities would do well to remember that *we are not the first*. We stand on the shoulders of giants. Those who have come before. Hats off to the ARC and advocates in intellectual disability communities!

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  24. Autism Speaks is a farce, a sham, a shame. They do nothing for families struggling with autism. For every $1 you give, 4 cents goes to actual research. Not kidding. They host their lavish fundraisers while condemning autism and ignoring those who have the disorder. My kids, both on the spectrum, hate them. As do I. Love your post. Now, if only more people could get a clue about how useless they are.

    As my friend often puts it… “Autism Speaks is about as useful as an ashtray on a Harley.”

  25. Thank you so much for writing this letter. I am a volunteer parent advocate for the ARC in my area. I am also an autistic adult with two autistic children. Autism Speaks does NOT speak for me or my children. We are not burdens and we live a happy life, thank you very much.

    “Now is the time to come together – people with and without disabilities, including autism – to determine where we want to be tomorrow, next year and 50 years from now. The rhetoric of 50 years ago has no place in today’s discourse.” This is so true. Again, thank you.

    • Erin, your perspective as a parent *and* and autistic adult is very important. Having both sides serves a couple key functions:

      1.)you are a bridge between groups that are often divided: parents and autistic individuals.

      2.)your duel status as both parent and autistic doesn’t allow over-simplification. It forces other people to look at who we are as people rather than our status.

      Bravo Erin! Keep speaking up!

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