Monday, June 25, 2007

Speaking vs. Being Heard

Here is a brief rundown of the seven letters, published in today's New York Times in response to the article, "Autism Debate Strains a Family and its Charity" (June 18, 2007)
One: The mother of a 23 year old man "with autism" wants Autism Speaks to support research to "fully explain the causes and recommend treatment for this confounding disability" (emphasis added)
Two: A brother an uncle to two persons "with autism", who is also an assistant professor of human development at Cornell University worries that the vaccine controversy has steered attention away from more general environmental causes.
Three: An "author of books about health and the environment" states that mercury is a known neurotoxin, and asks how its presence in vaccines and flu shots could possibly not "damage the brains of some of these children".
Four: The mother of an autistic son decries segregation of autistics from the rest of society, and would like to see more money spent on inclusive education, which she believes will lead to acceptance. She also states that "it would be great to find the cause and a cure".
Five: The mother of a 15 year old boy "with autism" demands more accountability from the pharmaceutical industry and believes that "medical professionals haven’t done as much as they should to investigate complaints and tend to play down possible evidence that would undermine the safety of vaccines".
Six: The mother of an autistic child now reaching adulthood would like to see less funding for research and more spent on practical services to benefit autistic people. Job training, job placement, housing and socialization needs are her priorities.
Seven: Barbara Loe Fisher, President and Co-founder of the National Vaccine Information Center writes about regression, brain and immune system dysfunction, etc.
Here is my letter, which was not chosen for publication:

To the Editor:

The irony of the current power struggle at Autism Speaks could easily
be missed by anyone not conversant in the politics of the Autistic Civil Rights
movement. While claiming to “advocate” for families of autistic children, Autism Speaks has ignored the opinions of autistic adults, excluded us from
discussions, and declined to have a single autistic person on their boards. This
situation would be unthinkable in a group claiming to serve deaf or blind
citizens, or purporting to advance the causes of groups disenfranchised by
reason of gender, race or ethnicity.

Autistic people have not been recognized as a valid minority group, largely because of organizations like Autism Speaks, which promote stereotypes of autistics as incompetent and a burden on society.

We do communicate, sometimes in standard ways, sometimes not. The Wrights and their cohorts seem to have a problem with that other important facet of communication called listening.

Scorecard (by self identification)

Family member of an autistic person: 6
Researcher or author: 2
Autistic persons: 0 (zero, zip, zilch, nada, none)
Scorecard (by interest)
Causes and Cures: 5
"Acceptance" (but cure would be preferred): 1
Acceptance, services, accommodation: 1
Listening to what autistic people have to say: 0
The irony of the current power struggle at Autism Speaks could easily be missed.


  1. Print it out and send it to the Times. How dense can they be. Someone at some point has to get it.

  2. Big time. I agree with the above: send it again. And if that doesn't work, send this whole post, scorecard and all.

  3. "Autistic people have not been recognized as a valid minority group, largely because of organizations like Autism Speaks, which promote stereotypes of autistics as incompetent and a burden on society.

    We do communicate, sometimes in standard ways, sometimes not. "

    YOU communicate very well with your keyboard. Others, for whom you have no right to speak, such as my son, do not communicate nearly so well. You have no right to speak for my son simply because you have an Autism (Aspergers) diagnosis. You do not share the same deficits or challenges that he faces and you do not speak for him. I speak for my son who can not understand or answer to this type of rhetoric. Other parents speak for their children who can not do so.

    It is unfortunate that the efforts of family members trying to help their own children are demonized by your ideology. References to a "scorecard" are also unfortunate as they minimize the challenges faced by severely autistic persons who have no knowledge of letters in the NYT.

  4. Harold,
    The views of parents are well represented in the mainstream media. The views of autistic adults are not. Until this imbalance of power is corrected, I will continue to speak for myself.

    You know nothing about the challenges I face. If you truly believe I am so very different from your son, you might want to consider refraining from references to numbers like 1/150 and also from use of the term "autism spectrum". These include many verbal autistics and people with diagnoses of Asperger syndrome, as I am sure you know.

  5. I think it can be (sadly) a mistake to assume that it would be "unthinkable" for a deaf-related or blind-related organization to be run without any significant representation from deaf or blind people themselves.

    In a great many countries, there are still many organizations "for" deaf people that include no actual Deaf people in any significant roles of authorities.

    Sometimes the distinction between the word "of" and "for" can become so controversial in some of these countries (e.g., I've heard this is an issue in South Africa) that even when Deaf adults do to organize themselves into an organization of their own they are very careful to avoid the word "of" in the organization name (such as "X Country National Association of the Deaf") because too many powerful, influential hearing leaders in deaf-oriented organizations in that country will object to it. (Not sure what their rationale is supposed to be. Maybe they see it as too sensitively "political" or "controversial" when an organization makes a point of distinguishing the meaning of the word "of" from the word "for" or dares suggest that it is more proper for people who are Deaf to make decisions for themselves rather than allowing hearing people to make all the choices for them. Not sure. But, the point is: assertiveness and self-advocacy among Deaf people is apparently still considered a controversial idea in some places.)

    People of all disabilities have probably at one time or another experienced disenfranchisement. And still do. The difference is, people with certain other disabilities, at least in SOME countries (e.g, the US) have been organizing themselves for years or decades longer than the autistic community. (I don't know how old the oldest autistic-run advocacy organization is, but as a point of comparison: in the US, the National Association OF the Deaf was established in 1880. Or, internationally, the World Federation OF the Deaf was established I think in the 1940s. And today has more than 100 member national associations of the Deaf.)

    So there has been more TIME for deaf people, blind people, etc. to get across the radical idea that, hey, we have the right to speak for ourselves. Since the 19th century for the Deaf community (not sure about blind people), compared to ... what? The late 20th century for autistic people?

    If this hasn't happened yet for autistic adults, then yes I can imagine that this is probably, unfortunately, related to the old "hierachy of impairment" idea. But I think it ALSO may reflect a great deal on the fact that the self-led autistic advocacy movement is, compartively speaking, so much newer.

    So keep pushing, keep educating people, keep advocating. Always stretch the edges of the envelope. Persistance will eventually pay. And I hope it helps that you'll be building upon the successes made by other closely related disability rights movements.


Squawk at me.
Need to add an image?
Use this code [img]IMAGE-URL-HERE[/img]