Speaking of Autism Speaks

Bob&Suzanne Wright, with Grandson (from Autism Speaks Website)

There has been a controversy brewing lately, involving the organization Autism Speaks. Facing a Congressional audience to address the epidemic, Suzanne Wright, co-founder and major contributor, expressed what has been categorized as inaccurate, overstated, or alarmist language.

The Wrights are important figures in this condition, who have taken autism to another level of public awareness, funding and research. Mrs. Wright is a concerned grandmother who completely understands the problem. She has created the infrastructure and the horsepower to make an actual dent in the solution.

The resignation of Autism Speaks’ Board Member and  ‘Aspergian’ John Elder Robison has increased polarization. He was quoted as stating that, “he cannot support the organization due to their tendency to portray autism in ways that are offensive to individuals with the diagnosis.” One Autism Society father expressed his opinion that, “They represent a philosophy of feeling sorry for ourselves and seeing tragedy in our children and adults on the spectrum.”

It appears that there needs to be other, more specific diagnoses. One for individuals who can defend themselves (and their families who have embraced the situation), and another for those who can’t, even if they wanted to (and their families who wish to find a cure).

Politics in not-for-profit organizations is just as divisive and controversial as any other Board of Directors. Our local Autism Society of America/Broward County Chapter/Florida Chapter – I can’t get it straight any longer – is a perfect example of this phenomenon. Should the proceeds of the Dan Marino WalkAbout for Autism go to this school, that service company, or those needy families? We couldn’t agree, and there was a split in our tiny charitable world.

A small but brave contingent in one local chatroom has expressed this same belief, that the Wrights are heroes. We should be more understanding of their strong desire to recognize the epidemic and leave no stone unturned in the search for answers. The Diagnostic and Statistical Manual of Mental Disorders (versions 4 and 5) lists the condition as Autistic Disorder. That means ASD is a recognizable medical condition, requiring treatments that may address and correct signs and symptoms.

There has been a great deal of criticism regarding the tactics, language and funding choices that Autism Speaks employs. It is now the largest organization representing people with autism in the U.S., with worldwide affiliations. The families that are affected will continue to stumble if there is division, misunderstanding, and poor organization.

This public discord disavowing such an important philanthropist and her charitable organization is less than helpful. It confuses perception – not just of Autism Speaks, but of the condition itself. Ultimately, we all have got to find a way to work together.

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10 Responses to “Speaking of Autism Speaks”

  1. Homosexuality was once a disorder and part of the DSM, therefore classified as in need of treatment.
    I am not a disorder. Autism cannot be separated from me.
    You seem to separate two groups based on the old, pointless and absurd functioning labels.
    The ones who are labeled severe “must” want a cure. Since they “can’t understand”, we should listen to the families.
    You are wrong. I am labeled severe and I am a proud autistic. Many like me have learn how to communicate in a way the neuromajority understands and feel the same way.
    Some you label as “can defend themselves” might want a cure.
    Everybody needs to be heard and A$ does not hear us. If they used their money to help the ones still without a voice learn the majority’ communication, maybe we all could speak for ourselves
    As for mrs. Wright, she is hateful

    • Dr. Udell says:

      Homosexual individuals do not have gastrointestinal issues, sensory problems, low muscle tone, immune problems or isolation. If you do not want to be ‘cured’, stay out of it. Mrs. Wright is perfectly within her rights to have her beliefs about her grandchild. That hateful thing… do you have other issues?

  2. My neurotypical friend has GI issues. Some people who are not autistic have low muscle tone. Not all autistics and not only autistics have “immune problems” and isolation? I have no idea what you mean by that. Those things are not autism. They can co-ocurr, but they are not autism. You sound a bit angry saying “stay out of it”. I don’t ever tell autistics that they cannot wish for a cure. I don’t tell parents to wish for it either. What I say is that A$ already knows that a cure is not possible because we are born autistic and will die autistic. A$ is after a cause, a genetic test, and this will lead to selective abortion. But more than that, they are the only “advocacy” group that demonizes the people they say they want to help. And they refuse to talk to us. What do you mean by do I have other issues?

  3. A little correction

    I don’t tell parents they can’t wish for a cure. I just tell them it is a waste of energy and time and services is a better cause to fight for

  4. Ib Grace says:

    Autism Speaks is not the largest organization representing people with autism, because it does not represent people with autism. You say it speaks for those who can’t defend themselves even though they want to, and if that’s true, it is clearly against the will of these people. Meanwhile, if you want to ignore and discount the testimonies of all of us who can defend ourselves, it is important to remove our numbers from the statstical representations of “autism” used to scare onlookers into believing there is an “epidemic.” For more information on why this is important, please see “No True Scotsman.”

    • Dr. Udell says:

      I guess I just don’t get it. Parents wish to assist their children and there is a movement against that.
      No good deed…

      • Amy Sequenzia says:

        Dr. Grace is not saying that parents cannot assist their children. What she said is that if Autism Speaks is speaking for the ones who “cannot defend themselves” and ignoring the “ones who can”, Autism Speaks should not count the latter in their statistics of “the epidemic”
        We all want to help the young autistics be the best they can be. Th problem with Autism Speaks rhetoric is that they lead parents to believe (and some parents continue to believe despite the harm) that their children are not good enough, or not who they are supposed to be. Parents who believe and repeat this rhetoric do not “assist” their children. They help to stigmatize them. We believe we are exactly who we are supposed to be. We work hard and some of us needs help. We all need accommodations. But we don’t need to be trained to look “normal”. We also want to find treatments and cures for the co-occurring conditions like GI issues and seizures. But I am sure non-autistics with these conditions want that too.

        • Dr. Udell says:

          Then, why bother with this research?
          “Work in her lab focuses primarily on two streams of research: 1) understanding the development of selective attention … 2) understanding atypical development … where there are documented attentional/perceptual processing atypicalities that interfere with certain social aspects of perception”

  5. On their website there are more than two researches and the most money goes to research of genetic markers. But hopefully these two are not “quack” (I would have to read more about them) and are going to help. It would have been nice if Mrs. Wright, instead of saying that we cause despair to our families and that they are not living, had addressed the people who read the op-ed with this type of information, instead of saying that we are tragedies and that a solution for dealing with us is urgent. We don’t see ourselves as tragic and urgent events in need of the national guard. Or maybe she could have, instead of saying we are missing, pointed out that developmental disabilities, like all disabilities, are part of the human experience.

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