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NIMH Head Calls For Autism Unity

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The nation’s top mental health official is questioning what gains can be achieved by deep divisions currently entrenched in the autism community.

In a blog post this week, Thomas Insel, the director of the National Institute of Mental Health, said that he sees at least four camps with distinct ideologies surrounding autism. There are those who see the disorder as an illness, others who view it as an identity, a third group who believe autism is the result of some sort of injury and, finally, scientists who view the condition as an opportunity to understand more about the brain, he said.

“These four kingdoms may not capture the entire universe of the autism spectrum, but they describe largely non-overlapping perspectives that now divide the world of autism,” Insel writes. “As long as each kingdom stays behind its own walls, there is little hope for progress overall.”

Insel, who in addition to his role at the NIMH serves as chair of the federal autism advisory panel known as the Interagency Autism Coordinating Committee, says it’s necessary to find common ground and ways to cooperate in order to make meaningful progress for all of those affected by autism.

“Fifty years from now we don’t want to look back at this period and wonder why we stayed so long behind these kingdoms’ respective bastions, empowering conflict rather than cooperation,” he wrote. “Instead, by focusing now on both short term needs and long term solutions we need a collective commitment to science and service to improve the world for both children and adults on the spectrum.”

This is not the first call in recent times for greater unity within the autism community. Last August, the Autism Society indicated plans to organize a summit bringing together stakeholders with different viewpoints in an effort to establish a more united front.

“The infighting that a lot of times characterizes the autism community needs to stop,” Scott Badesch, president of the Autism Society, said at the time. “Until we come together, we’re not going to be able to move the needle on enhancing autism services.”

Though Badesch indicated that there was a good deal of interest in the approach, nothing has publicly materialized from the effort to date.

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Comments (16 Responses)

  1. Marjorie Madfis says:

    How about none of the above? How about those of us who think it is a neurological disorder (not an illness) that results in symptoms that often prevent people from leading satisfying and independent lives.

  2. KA101 says:

    Which then calls into question whether those folks prefer to remove the symptoms (medical model) or overcome the social inertia that invokes the symptoms as grounds to prevent people from leading a satisfying/independent* life.

    *To the degree that anyone in the world is truly independent of others (not many people are off-grid, etc).

  3. Tacitus says:

    Once again, we get an oversimplification of the anti-cure perspective. Autistic is not something you just happen to “view yourself” as being. I was diagnosed at a very early age. I struggled in school. I went through the parade of doctor after doctor. It’s not an “identity” I chose to adopt. I do not accept that the solution to my problems is to eliminate my divergent essence. I don’t have to be like you in order to be a functional human being. Human beings are not interchangeable parts that come out effective or defective. We’re not machines that are either whole or broken. We are diverse organic creatures who have different strengths and weaknesses. There is no basis for demanding that my strengths or my weaknesses have to be the same as yours.

  4. Jennie says:

    The same is true for most disability groups. Disability is not one size fits all. Look at the response from the individual “Tacitus”. His needs are nowhere comparable to those of the individual with Autism who is non-verbal requiring continuous supervision and care. No comparison Yet the advocacy doesn’t reflect this range of need.

  5. Tacitus says:

    Jennie, you don’t know anything about me. All you know is that I can type. There are good typists who cannot speak one word aloud. But you know everything, don’t you? If people like you could possibly restrain your arrogance, it might be possible to get funding for decent supports for real people in real life.

  6. Glen S says:

    Again Tacitus’ statement is a bit like the “pot calling the kettle black.” He hides behind anonymity so as to create multiple over simplifications and dismissals of anyone with whom he disagrees. No it is not an “identity” at all. Autism by the very title is a disorder. How is it a bad thing that we don’t want one generation after another of our children to deal with the same effects of this disorder? Why is it that society and employers must do all the giving to adults who won’t seek the help then need to deal with difficult situations? How is it a bad thing to look for the cause of a disorder which has seen a marked increase in the last 25 years?

    Identity theorist don’t have any answers for these because they want to create a fallacy by over simplifying the issues and then vilifying anyone who dares to disagree.

  7. Tacitus says:

    Once again, Glen tries his best, but can’t come up with anything nastier to say about me than that I am posting anonymously ON THE INTERNET. He’s incapable of addressing the actual ideas other people venture forth, so he invents totally new ones and attacks those instead. This is the level of intellectual engagement I’ve come to expect from the “Self-advocates are ruining autism!” crowd.

    As for his ideas, well. Human communities have been caring for their sick and disabled for a hundred thousand years; there is nothing unprecedented in doing so. A few people may resent helping their fellow man, but I am not one of them. I have no problem with people being supplied with text-to-speech devices, improving nutrition for picky eaters, alleviating pain, or any of the more genuine complaints; all things which Glen S. has accused me of being against. I don’t find complaints about rocking back and forth to be compelling, however. Complaints about the expense of other people’s disabilities do not sway me either. I’d be happy if a part of my labor can help people who can’t help themselves. Unfortunately, I don’t often get the chance to apply my skills because of the prejudice and discrimination in the workplace. This doesn’t help anybody.

    As for this supposed increase in autism: when you broaden the criteria for a diagnosis, suddenly a lot more people qualify than did before. The “Autism epidemic (C)” crowd have never asked for an explanation of the marked decline in diagnosis of childhood schizophrenia, I’ve noticed, yet the change to the autism criteria and the following explosion in autism awareness don’t explain anything to the people in this crowd. This is an extremely puzzling asymmetry.

  8. Lori says:

    One need only watch the senate house committee hearings to know there is a great divide in terms of perspective and beliefs among those who champion their respective causes within the autistic community. This is not surprising since the cause is unknown, the rate is rapidly increasing, and we are dealing with a spectrum necessarily lending itself to variety in approach/beliefs from those effected. Perhaps a spectrum council might be formed with each faction, if you will, being represented in the council; and an objective figurehead to pull the perspectives together in effort to achieve shared goals from a unified position. Not to over simplify or over complicate, but think states come together to form the United States, perhaps the United Spectrum Council. Just a thought. Maybe one of the figureheads of one of the kingdoms will read this and run with it.

  9. MeToo says:

    “Glen S.” is just as anonymous as others here. Just a bit less creative.

  10. Doug Diamond says:

    Wise words and words to heed. Let us affected by autism not be trapped in philosophical/ ideological warfare that only impedes progress and public understanding. It can and has led to a wasting of resources and in some cases, personal enrichment of the “crusaders”, which dilutes the entire gamut of resources from money to political available for our loved ones. Let us not only here Director Insel’s advice but rally behind him. We have nothing to lose and much to gain.

  11. Denise Kline says:

    Ahhh yes I couldn’t agree with Mr Insel more. Not only do the various schools of thought on ASD’s need to collectively work together, but so do the many organizations! Same for cancer! Work together all of us and the outcome with exponentially greater. We need more chiefs and less indians.

  12. KA101 says:

    FWIW “Glen S” came up with 108M results on google; unless that’s a DC energy lawyer or a Seattle doctor posting there, “Glen S” is functionally as much a pseudonym as “Tacitus” or, for that matter, “KA101″. So, maybe you drop this anonymity complaint, Glen S, as it distracts from the issue?

    As I pointed out, there are two main ways to relieve the problems associated with autism. Rewiring autistic brains to be less/not autistic would indeed reduce or eliminate that problem, at the cost of basically approving brainwashing for people who don’t fit in well with the majority of the population. Rod Serling covered that fairly well back in the 1960s. (“Number 12 Looks Just Like You”, in particular.)

    Alternatively, non-autistics can demonstrate the empathy & flexibility I’m told us autistic folks lack, and start by taking our thoughts seriously. Since the problems involved are social in nature, improving social connection ought to go a long way toward resolving them–and leave people’s selves intact in the bargain.

  13. Bob T in NJ says:

    The autism community mirrors our society in some ways. There is a perceived inequity about the availability and distribution of resources: services vs. research. Spending every dollar on research wouldn’t help thousands upon thousands in need of housing, jobs and other supports today. Spending every dollar on services won’t help vital research that will improve lives and alleviate suffering in the future. This where leadership needs to step in, as Tom and Scott have rightfully emphasized. There are considerable resources today being expended for both research and services. But the longer the autism community remains fractured on short term vs. long term goals, the less likely it is that either goal will be realized.

  14. Whitney says:

    I could divide on these lines.

    Those who are on the Autism Spectrum, those who do not, those scientist wish to advance their careers by studying it and not how to make life easier that who do, and those wish to help but not sure how to help.

    One thing I do agree on the infighting is hurting the cause of Autism.

    There is different symptoms of Autism Spectrum Disorder so it must be handle at case to case basis. Yeah there those who can not speak or vocalized it is not unheard of.

    This article makes a lot of assumptions that are errant, but it right about the infighting, it has to stop.

  15. autismUXB says:

    There is always diversity in disability and advocacy groups which brings disagreements. However having seen this argument by organizations like NIMH for decades, it’s clear that Thomas Insel’s perspective is really an effort to find an excuse not to do anything and blame advocates for their inaction.

  16. TurboQueenofEvrythnginIL says:

    Thank you Scoop for your service to special populations.

    There, I said it, “special populations”. When we ALL finally decide to embrace the ENTIRE special population (All disABILITES), JOIN forces and WORK together to eradicate issues in my humble opinion are of major civil rights concern/violations from sea to shining sea…we would OR could NOT be ignored. Remember “Rise of the Planet of the Apes”?

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