My beliefs about autism, research and more...

John Elder Robison Community Member April 27, 2011
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    In a recent article on About.Com, Lisa Jo Rudy asks who, if anyone, should speak for the autism community. That raises the question . . . speak to whom? And for what goal?

    Throughout history, when we read of “speaking for xxxxx,” it’s in reference to some oppressed or marginalized group, whose cause is advanced before a reluctant government or church.

    For example:

    Who speaks for the Arab population in Israel?

    Who speaks for Gay soldiers in the Armed Forces?

    Who speaks for migrant workers in California?

    In almost every case, someone “speaks up” to obtain some semblance of wage or life equality for the oppressed group. I do not see myself as such a spokesperson. I’m not political, nor am I any kind of activist. That said, I am aware that I have a good many readers. So whatever you call my activity, I’ve got an opportunity to speak out for what I believe in.


    So what do I believe in? I thought it might be appropriate to use this column to state some of my beliefs, which are always subject to change as my knowledge grows and I continue to evolve . . .

    First of all, I recognize that the autism spectrum is very broad, encompassing verbal, commercially successful, eccentric geeks at one end and non-verbal, unemployed, disabled individuals at the other. There is a broad range of humanity between those two extremes, and their wants and needs are not only different, they are often mutually exclusive.

    I believe some in the autism community waste a great deal of time arguing for or against the concept of cure. Let me state my position on “curing autism.” While I think autism is a naturally occurring brain difference, and is not “curable” in the way an infection might be cured, I believe we should develop tools to remediate autistic disability. For example, I believe we should develop ways to help non-verbal people communicate. I also think we should try to develop therapies that will minimize the impact of (for example) genetic differences that lead to autistic disability in infants.

    I am very much in favor of using science to make the lives of autistic people as full and satisfying as they can be. I don’t call that a cure, but other people may use that word for the work it encompasses and I hope we can accept that idea without fighting over semantics.

    At the same time, I am opposed to forcing any treatment or therapy on anyone against their will, and I am opposed to programs that lead to development of genetic tests for the purpose of abortion.

    I believe all people deserve to be treated with respect, and I believe there is room in this world for many different points of view.

    I think autistic people deserve the right to advocate for themselves, and make their own decisions with respect to therapy or treatment to help fit into society. That said, I understand that some autistic people cannot do this, and others need to look out for their interests.

    I recognize there are many ethical dilemmas in the autism world, such as who needs a guardian and who doesn’t, or what right parents should have to choose controversial treatments for their children. I don’t have absolute answers to those questions but I’m willing to contribute to the dialogue.


  • I believe the medical community has a duty to search for ways to remediate the disabling aspects of autism, and I support their efforts to do that. I recognize some autistic people will embrace new therapies, while others will choose to live as they are. I believe we should respect both paths.


    I think the causes and cures for autistic disability are going to be complex and hard to find. If there were easy answers, we’d have them already. I believe we need to put more money into research, while also finding family services and accommodations.

    To that end, in addition to medical research, I believe psychologists and mental health professionals should develop new strategies to help autistic people succeed and be happy.

    I believe employers should do more to accommodate autistic workers. Autistic people bring a unique set of skills to the workplace, along with unique challenges. I think much more can be done to help our autistic population find satisfying and meaningful employment.

    At the same time, as an autistic person, I recognize that we need to learn to behave in ways that will be acceptable to the general public. Businesses should make reasonable efforts to accommodate us, but we need to take our own steps to fit into the workplace as best we can.

    I believe in the power of early detection and intervention. Study after study has shown that autism’s disability is minimized through early intervention. I support research into detection and intervention in toddlers and infants.

    I believe schools can do more to develop programs for autistic kids. My Aspergian son and I are both high school dropouts, and I’d like to see that sort of thing come to an end.

    I believe the scope of autism therapy and treatment covered by health insurance should be dramatically expanded.

    I believe autistic people should have greater representation on the governing boards of organizations that purport to serve them. I believe this to be true in both the public and private sectors.

    I believe in the value of mentoring, and the value of positive role models.

    I welcome your comments and thoughts

     

    To read more of John’s insights about living with Asperger’s Syndrome, click here.

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