My response to Mrs. Wright of Autism Speaks

20 Dec

As I recently wrote, Autism Speaks has once again shown it’s lack of respect for autistics and their parents with an opinion piece by Mrs. Suzanne Wright, co-founder of Autism Speaks.

I left the message below in response to Mrs. Wright’s piece.

I can not resign any position with Autism Speaks, as John Robison has done. I have been a member of one autism organization–a group which later became the local chapter for Autism Speaks. I resigned that group when they showed that they would waste their efforts lobbying against legislation that had nothing to do with autism. I’m glad I quit then.

One thing autism has taught me is that so many things we take for granted are gifts. It is a gift to have average or above intelligence. We don’t earn intelligence. It is our responsibility to use our gifts well.

Mrs. Wright, you aren’t using your gifts. After years with the autism community, you continue to speak for us as without understanding us. You aren’t using your gifts. My kid will never have the ability to understand the world like you can. Your gifts are squandered and that is a terrible shame.

I am doing more than “existing”. I am living. Is it harder with a disabled kid? Sure. It’s harder for him.

Use your gifts. Much more–use the gifts of those working for you. Learn how to frame the situation as being difficult, for that is what it is. But not as a life without hope. A life of despair.

I live. I love. I have joy. My son lives. Loves. Has joy. I have not lost touch with him. He has not lost touch with me.

It will be harder for him to enjoy life if the world sees him as less than a full person. It will be harder for him if we don’t put his needs first rather than mine. Please learn to put first the needs of the people we represent and advocate for.

If we in the autism community can’t put forth this message, how can we expect the rest of the world to do so?

Before we can craft a national plan we in the autism community must have a plan of our own. It must start with respect. Respect for autistics. Respect for families. And you are not showing that.

I saw the response Autism Speaks put forth in your home town newspaper in Florida. Please stop dodging this important question by framing it as “high functioning” adults vs. parents of “low functioning” children. Many of us who are parents of children with great challenges disagree with your stances. We’ve been telling you this for years. It’s time to listen.

By Matt Carey

22 Responses to “My response to Mrs. Wright of Autism Speaks”

  1. chavisory December 21, 2013 at 00:35 #


    Also…when Autism Speaks uses language like that contained in the “Call for Action,” and autistic adults protest…

    And representatives and supporters of Autism Speaks say “Well we’re not talking about people like you, who can communicate. We’re talking about the most severely affected children, who can’t…”

    What does it say about them that they claim only to be talking that way (“national catastrophe,” etc. etc.) about a group of people they assume to be incapable of answering back or defending themselves?

    Nothing good whatsoever, is what.

  2. farmwifetwo December 21, 2013 at 20:18 #

    Things that are taken for granted are gifts?? WT??? Seriously??

    My youngest if he had the ability to tell you to shove it… would. My youngest would give just about anything to go to camp like his brother. To be in a regular room. To play with the other kids. My son is trapped behind that wall that is autism and he knows it… and even at severe is no longer ID… I have 8pgs dated 6mths ago, to prove it. But what he is is disabled (those 8pgs show that too)… and there’s nothing “wonderful” about that.

    I’m sorry… demanding that someone be happy to miss out on life. To miss out on making their own choice. To miss out on activities. To miss out on creating their own family. To miss out….

    Are you existing… let’s see… how much sleep have you lost?? How many things have you been unable to do?? How many choices have you made solely because of autism?? I appreciate that we do these things because they are necessary and I regret none of them… but it is existing no matter how you sugar coat it. But then only 25% of parents do the slogging… are you a 25 or one of the 75%?? That would determine the amount of work done, and sleep lost.

    Autism is not wonderful and refusing to give voice to those that are actually disabled… is cruel at best. You don’t speak for me and mine… those that can speak aren’t disabled. I personally am very, very happy that with the V there will be fewer and fewer of them.

    • Sullivan (Matt Carey) December 22, 2013 at 00:13 #


      I don’t expect you to ever understand. Just extrapolating on years of data. Not just this complete miss. Someday I would just be happy if you made sense. If you can read the above and write “demanding that someone be happy to miss out on life” in response. YOU CLEARLY MISUNDERSTAND.

      Yes–most of the population takes for granted their intelligence. It’s a gift. It isn’t earned.

      How much sleep have I lost? As you note, I don’t speak about my private life much and even less about my kid. I’ll continue to do so, even though this leads you to make really poor assumptions. But, then again, when I spell things out point by point, you still misunderstand. I wish you well. And goodbye.

    • chavisory December 24, 2013 at 22:20 #

      How much sleep have I lost…a lot.
      How many things have I been unable to do…a lot.
      How many choices have I had to make because of autism…oh god, if only I had the capacity to tell you.

      Don’t talk to me about not doing the “slogging” or the work.
      I am actually disabled and you have no frakking idea.

      If you seriously think that speaking ability categorically makes you not disabled, I just…

      And the DSM-5 doesn’t mean there are fewer of us. We’re still here. And we always have been, and still are, autistic. All of us.

  3. futuredave5 December 21, 2013 at 23:53 #

    This all seems a little vague. What, exactly, are you asking her to do?

    You mentioned a legislative request, but I don’t even know what you are talking about. AS lobbied in favor of the ABLE act, and in favor of including ABA coverage in TriCare. I know they lobbied in favor of the “Kids First” bill, which is a mixed bag, but certainly their intentions were not disrespectful.

    They also called for closer monitoring of federal autism research spending. This is also a mixed bag, but I can’t imagine anyone arguing that they have no right to do so.

    They lobbied heavily in favor of a strategic national autism plan. I understand that you would like to have your own plan first, but it doesn’t seem disrespectful to ask Washington to take the ball and run with it.

    I hear a lot of calls for AS to treat autistics with more respect, but I don’t hear a lot of specifics. I understand that people want them to change the language they use to describe autism, but for me, that is a matter of semantics, not policy. It is easily changed and easily fixed.

    To me, the Sine qua non of charities is the efficiency of fundraising. AS spends a big chunk of their budget on fundraising, but so do a lot of other big charities. Charity navigator ranks ASA nearly the exact same as AS. (I have rarely donated to either, because I prefer my donations to be spent locally.)

    So should we ask them to stop spending so much money on fundraising? I am not exactly sure how that would help.

    • Sullivan (Matt Carey) December 22, 2013 at 00:14 #

      “..but for me, that is a matter of semantics, not policy.”

      OK. Sure. Hate speech is just semantics.

      • Dave December 22, 2013 at 12:10 #


        That is a stretch, and you know it. The most loaded part of her editorial (in my opinion) was “Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.”

        This is not hate speech. This is her description of the crisis. She is not trying to disparage autistics, she is trying to get outsiders to understand the depth of the issue.

        It might not describe your life very well, but I know quite a few people who read that paragraph and shared her despair. There are many parents who feel that exact same fear.

        There are plenty of autistics who have good long-term plans, and are every bit as satisfied with their lives as I am. Good for them. Clearly, they do not need AS to speak on their behalf.

        But you are accusing her of “hate speech” simply because she is describing her relationship with autism in terms that you dislike. She makes the classic mistake of equating her problems with yours, simply because the same medical term applies to both.

        Obviously, she hates autism. She does not view it as a “gift” or as being “differently abled”.

        An oversight? Sure.

        Unfair characterization of your emotions? Yep.

        Inaccurate generalization of a complex spectrum of behaviors? OK.

        Hate speech? Not really. “Hate speech” has connotations of racism and/or bigotry. It implies that you hate a person simply because they belong to a certain group.

        For you to accuse her of hate speech is every bit as unfair as her accusing all autistic kids of biting themselves.

        Which, in fact, she never said. What she said was:
        “Maybe their child has been trying to bite them or themselves.
        “Maybe they can’t afford the trip to a doctor specializing in autism.
        “Maybe there is a waiting-list for ABA, speech and OT.
        “Maybe their insurance won’t pay.”

        You find this offensive because it focuses on the feelings of the parent rather than the autistic? You consider this “hate speech”?

        I realize it is a popular meme to accuse AS of “hate speech”, I just think it is an over-reaction. AS is not calling for autistics to be imprisoned, deported, or spanked. They are calling for more funding, more research, and a national plan of action.

        I agree that this particular blog post could have been more positive. Instead of talking about the number of children who cannot care for themselves, she should have talked about the percentage who can be taught to care for themselves with just a minor investment of time and energy.

        Instead of talking about how much money it costs to care for a person with autism, we should be talking about how much less it will cost if we can help integrate them into society.

        This is what I mean by “semantics”.

      • Sullivan (Matt Carey) December 22, 2013 at 16:56 #

        It isn’t a stretch–I was making a point. I didn’t directly say that the way AS is presenting autism amounts to “hate speech”. Sort of a trick, I admit. But, there are borders. One can say any description is “just semantics”.

        Mrs. Wright has gifts my kid will never understand. I’m just asking her to use them rather than waste them. Don’t go for the easy scare tactics. Take the time and energy to frame the discussion in a better way. One can acknowledge disability, challenge, adversity and more without stooping to “they aren’t living” sorts of language.

        “Just semantics” or “just” semantics. Words count. Words hurt. It’s “just” semantics when someone uses the term “retard”. Yet Special Olympics put out a campaign “stop the r-word”.

        Words count. It isn’t “just” semantics.

        My kid has an excuse for not being able to formulate an argument like that. Mrs. Wright doesn’t. She chooses her language and I, and many others, wish she would choose another approach.

    • autismjungle December 22, 2013 at 09:16 #


      What, exactly, are you asking her to do?

      As an autistic, this is what I’m asking her to do.
      I am asking her to listen to what autistics and their families have to say.
      I am asking her to have autistics in her organisation up to and including at the board level.
      I am asking her to stop using rhetoric that dehumanises autistics and makes it more likely that people who murder them will get lesser sentences.
      Finally, I am asking that, when she or Autism Speaks are criticised, she listens to the criticisms and concerns, takes them on board and makes changes, instead of trying to reframe the debate as “high functioning vs. low functioning”.

      • Dave December 22, 2013 at 11:20 #


        Thanks for taking the time to respond. I think I am beginning to understand what you are saying, and I admit that I am not as close to the issue as many others.

        Let me try to summarize:

        1. You want more autistic individuals represented in the management and Board at AS?
        2. You want AS to stop describing autism as a disability?
        3. You want AS to respond to criticism by changing their strategy?

        I am asking these as questions, because I don’t want this to be a straw-man discussion.

        It is my understanding that AS made several attempts to have autistics in their organization, and that these efforts are ongoing. Not everyone fits into every organization.

        When Robison resigned from AS, one of the things he discussed was his feeling that too much money was being spent on research, and not enough on therapy. This is a valid reason to leave a charity. It does not mean that the charity is evil, simply that they have a disagreement as to where money should be best spent.

        I would also point out that AS does spend quite a bit of money on therapy, just not the percentage that Robison wanted. He seems to want 100% spent on therapy. If so, then he is correct that he should seek a different organization. He wanted the organization to change not only their methodology, but also their mission, to match his own. He is free to make that request, but they are also free to say “no”.

        I also think it is obvious that Robison is extremely high functioning, and has gotten (much) more so in the last few years. I am glad to see that he wants everyone to benefit from the same therapies he received, but let’s be honest with ourselves: Those specific therapies will not work for everyone.

        Autism Speaks cannot change course every time a Board Member finds a therapy that works. They can certainly add more ASD individuals to their Board. I don’t see this as an organizational failure, just a temporary condition that they need to fix.

        As far as the second request, I disagree that the language of Autism Speaks is what leads to discrimination. There was discrimination against autistics long before AS. If anything, AS has done a lot more to fight discrimination than to support it.

        AS could certainly review the way they respond to complaints. But it is not fair to say that their overall strategy dehumanizes autistics just because they once compared it to a “grave illness”.

        They didn’t SAY it was a grave illness, they just used the comparison to make a point.
        in my opinion, too many of us jumped up and acted offended. Too few us jumped up to agree.

        Wright’s article referred to “the autism crisis,” which she said demands “a national response.” I understand that you might not be in crisis mode, but some people are.
        Wright also used the “crisis” talk when she met with congressional leaders to press her case for more money for research, treatment and services to address autism.

        This has been their strategy for some time, and I disagree that they should change it. Although some people disagree, some people agree.

        Wright wrote: “If three million children in America one day went missing – what would we as a country do? If three million children in America one morning fell gravely ill – what would we as a country do?”

        This is a metaphor. It is an analogy used to make a point. It is not dehumanizing, it is mostly the opposite. It puts a non-insulting face on a developmental disability. It implies that autism is not the fault of the autistic.

        It is a call to action. It is only because of the quirks of our community that we decided to attack the messenger.

      • Sullivan (Matt Carey) December 22, 2013 at 17:00 #

        “This is a metaphor. It is an analogy used to make a point. It is not dehumanizing, it is mostly the opposite. It puts a non-insulting face on a developmental disability. It implies that autism is not the fault of the autistic.”

        Pick another metaphor. She’s a bright woman with even brighter people working for her.

        It’s a call to action. A poorly presented call to action. Look how many responses she got. I don’t like the “appeal to popularity” but look how many John Robison got. It’s not like it’s just me and AutismJungle making these criticisms.

      • autismjungle December 22, 2013 at 12:55 #

        In answer to your questions and re your comments:
        1. You want more autistic individuals represented in the management and Board at AS?

        2. You want AS to stop describing autism as a disability?
        I want them to stop describing it as a tragedy. There is a difference between describing autism as a disability and talk of wanting to drive off a bridge with one’s autistic child in the back.

        3. You want AS to respond to criticism by changing their strategy?
        Yes, and I’m surprised you even asked this question.

        Re your comments on Robison, he joined Autism Speaks because in 2009 the organisation released a video entitled “Autism every day”. My comment above about driving off a bridge? Mentioned in the video. Robison hoped he could get Autism Speaks to not use such harmful imagery. As his resignation letter makes clear, he wasn’t.

        As far as the second request, I disagree that the language of Autism Speaks is what leads to discrimination.

        Their language makes the problem worse, even if it didn’t cause the problem in the first place.

        AS could certainly review the way they respond to complaints. But it is not fair to say that their overall strategy dehumanizes autistics just because they once compared it to a “grave illness”.

        In your comment, you said you didn’t want to straw-man. I’m afraid that you have done just that. In their “Autism every day” video, they depicted autism as a ghastly tragedy, not a problem. Ditto with this call to action. Their language DOES dehumanise us.
        I do not have a problem with a “call to action”. I have a problem with the way they depict autism as a ghastly and unmitigated tragedy.

      • autismjungle December 22, 2013 at 13:07 #

        For another comment on Autism Speaks “autism as tragedy” you may want to read this by Namnezia:

      • John Elder Robison December 26, 2013 at 21:23 #

        I’d like to address Dave’s comments about my views on Autism Speaks policy, which are incorrect.

        First, I did not want 100% of the Autism Speaks budget spent on therapy. Nor did I feel “too much was being spent on research and not enough on therapy.”

        What I said – and still believe – is that the research being funded is not being translated into tangible benefit for people living with autism now. The translation horizon of the basic genetic research that’s the core of the AS program simply isn’t enough if your mission is to help families today.

        I wanted to see a shift toward more diverse research with a higher likelihood of shorter translation time. If you want to hear more about this, look at my address to the National Institutes of Health this spring where I advanced the same suggestions to that agency.

        Dave, you also imply that I’ve “gotten more high functioning and I want everyone to receive therapies I received.” That’s incorrect. What I actually say is this: We need to recognize that a wide array of therapies are needed to address the many challenges people with autism face. AS has done very little – in my opinion – to identify, validate, and help deploy new and innovative therapies. I am not pushing any single therapy because there is no single answer.

        Finally, I would point you to the many comments here and elsewhere that ask Mrs Wright and her organization to stop depicting people with autism as “less” than others, because that is the meaning of her words.

        You may say that’s just how I or Matt sees the words, but judging from the comments – pro and con – the vast majority of readers see this issue as I do, and that is the core reason why I resigned. If the head of Autism Speaks thinks as expressed in that article there’s no place for me in the organization.

        The language used in her essay simply isn’t language I want to be associated with. The fact that they’ve heard this before – many times – over the past six years tells me they are set in their ways, and not planning to change. That’s OK for some, but it’s not OK for me.

        Best wishes
        John Elder Robison

      • Sullivan (Matt Carey) December 28, 2013 at 00:12 #


        I appreciate you taking the time to comment here. I greatly appreciate the work you’ve done at Autism Speaks. I’ve spoken with someone who has been in meetings with you and who related how valuable your input has been in focusing attention on topics that have the potential to help autistics.

        I hope you and yours had/have a great holiday.

    • Saraquill December 26, 2013 at 23:12 #

      “I hear a lot of calls for AS to treat autistics with more respect, but I don’t hear a lot of specifics.”

      Here’s one: AS needs to stop issuing statements that portray us as soulless abominations that are better off dead, lest we pollute our families. That was the point of their “Autism Every Day” and “I am Autism” videos.

      • Sullivan (Matt Carey) December 27, 2013 at 18:41 #

        “I hear a lot of calls for AS to treat autistics with more respect, but I don’t hear a lot of specifics.”

        There were no specifics from Mrs. Wright. I wonder if you noticed that. A “call to action” without any details.

        Let’s go through her “call to action” and see what specifics I might find that could treat autistics and their families with more respect. Yes, and their families. AS was disrespectful to us as well.

        “If three million children in America one day went missing – what would we as a country do?”

        Don’t refer to austistics as “missing”. Don’t frame autism as being about children and parents primarily. Or, worse, as about parents then children. Include adults.

        “If three million children in America one morning fell gravely ill”

        Autism is not an illness. It is not “gravely”. I.e. this is not something leading to the “grave”.

        “Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.”

        Again, don’t frame this as being only about children. Don’t lie and say we’ve done nothing.

        “We’ve let families split up, go broke and struggle through their days and years.”

        Don’t perpetuate the failed idea that autism increases divorce rates. That’s been clearly debunked.

        “Don’t our families deserve it? America has always been about its great people. Yet, we seem to have forgotten our children – and our children are our future.”

        Again, why is this only about children?

        “Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.

        These families are not living.”

        Yes, it’s hard. It’s hard first and foremost for autistics. But the framing is that it’s the families (read: parents) who are having the most challenge. I was very specific above when I pointed out that, yes, my child and I are living. My child faces a great number of challenges but that doesn’t equate to not living.

        “They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7. ”

        Do I have to say it? We are more than existing. Is life harder as an autistic or as a parent of an autistic? You bet. Doesn’t mean that I’m merely existing.

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

        Again, note how this is voiced. Life is lived moment to moment….for the parents. It’s all about how the autistic child affect the lives of the parents. Not how the autistic (who could be an adult–most are) faces the challenges of life. Despair. Pretty clearly sending out the message that life with an autistic child sucks. No joy.

        Then we get lectured about “this is autism, this is autism, this is autism, this is autism”. Yes, she says it four times. That’s not autism, by the way. Autism is a disability. Me staying up late or managing seizures or fighting school districts isn’t autism. Autism is a description for the challenges my kid faces. Parenting a disabled child encompases much of what Mrs. Wright is saying. And more. Parenting an autistic child also includes victories. It means that even the smallest milestone is a victory and is celebrated.

        “What I described above is really just the beginning. In the next ten years, 500-thousand Americans with autism will be growing up and out of the system which means they will no longer qualify for the services they rely on every day. ”

        Ah, autism=epidemic. We don’t have anything in place for autistic adults. Why? Because those promoting the epidemic have been so deeply in denial that they have not pushed for efforts to improve the lives of adults.

        “So let’s dial back a minute and consider the babies being diagnosed with autism every day in this great country”

        Ironic. So many of us are asking AS to “dial it back”. Take the rhetoric down.

        “We know children from minority and lower income families are not getting diagnosed as early as they should be, so their treatment begins later which might decrease their chance at progress.”

        I agree that we need more emphasis on under-represented groups. But–We continue to miss many autistics, not just those from minority and lower income families. We are missing many adults, never diagnosed. We are missing many children from non-minority families.

        Then we go into the cost of autism, and other regular AS talking points.

        But, again, notice that Suzanne Wright presents no plan. No outline for a plan. Hold a meeting. That’s her plan Yay. Gee, maybe we could get Daryl Issa to hold a hearing and then do NOTHING about autism afterwards and call that a step forward. Other groups have done that.

        Meetings. Maybe in the meeting they will call for more meetings?

        Hold a meeting…without autistics present.

      • Sullivan (Matt Carey) December 27, 2013 at 21:02 #

        I forgot:

        “Yet we’ve for the most part lost touch with three million American children”

        We haven’t lost touch with autistics. I am in touch with my kid ever day. So are the team (teachers and therapists). Ironically Mrs. Wright ignores adults and then complains that we have lost touch with “three million American Children”. How about the 10M or more autistic adults? She doesn’t even mention them. How about them? Many aren’t even diagnosed and counted, suggesting they are not being appropriately supported. We HAVE lost touch with autistic adults. We need to fix that.

  4. autismreality December 22, 2013 at 07:21 #

    Mr. Carey, I am the father of a soon to be 18 year old son with severe autism disorder and ‘profound developmental delays. He suffers from seizures that affect him daily and that almost caused his loss of life this past year. His issues include sensory challenges and Self Injurious Behavior challenges. I applaud Suzanne Wright for having the courage to speak up as she did and speak honestly about the realities confronted by many severely affected by autism disorders including their families. You on the other hand simply follow obediently a script that was first begun with Kanner and amplified by Bettelheim … attacking family members of children with serious autism disorders.

    It is you that adheres to, and regurgitates, the hate script of the modern followers of that perverse, non science based belief. Keep your eyes shut to the realities of autism disorders if you choose Mr. Carey. Some of us are concerned about our children, their quality of life and what faces them as we age and pass on. One thing that is known with certainty: you and others who subscribe to the autism disorder is not really a disorder nonsense, and assist so willingly in helping prevent public awareness of serious autism disorder challenges will not be there to help them. Shame on you Matt Carey. Thank you Suzanne Wright.

    • Sullivan (Matt Carey) December 22, 2013 at 17:14 #

      Mr. Doherty,

      interesting to see you return. I recall that you left after it was repeatedly pointed out to you that you mischaracterize my stances (in those case on researching environmental risk factors). Rather than admit, in the light of overwhelming evidence, that you were wrong, you left.

      Before that you used to lecture me about how as the parent of a “high functioning” child, my opinions didn’t count as much as yours. Where you ever got the opinion that my kid was “high functioning” (other than the fact that I disagree with you and you assume those who disagree with you must be different than you) is beyond me.

      You take exactly the divisive approach here that characterizes your writing. You start with “My opinion is valid because my kid has ID”. Show me where you have ever advocated for the needs of autistics without ID. You get the point of that request, don’t you? You would divide the community.

      I’m not surprised that you support Mrs. Wright. It’s sad, really. Predictable, but sad.

      Are you going to do your usual schtick and write about me on your blog now, rather than participate in the discussion here? I’ll assume it’s true and continue my practice of not reading your site.

      Have you ever noticed the extreme irony in your screen name? Autism Reality. Singular. There is only one. Yours. Any experience unlike yours isn’t “autism reality”. As I already noted, you assumed that since I disagree with you, I can not be the parent of a child with ID and other significant disabilities.

      Here’s a difference between you/farmwifetwo and myself. I don’t use my child as a shield or a sword. I doubt you understand the point.

  5. Ricardo November 12, 2014 at 04:39 #

    Autistic people deserve the supports they need and this mum brings it to light.


  1. Autism Speaks: Follow Up Post | autismjungle - December 24, 2013

    […] rhetoric?” I’ve also been in a fight over at Left Brain Right Brain in these two posts. The bottom line is Autism Speaks uses the rhetoric of “Autism is a tragedy”. […]

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