This was posted as a comment at The New Republic. While I used the qualifier "if" referring to ASAN, it may appear that I was asserting as an affirmative that "ASAN as an organization does not include the severely impaired within its ranks, within leadership and policy decisions, then there's a problem." I've been directed to ASAN's public policy page, which states the following:
"ASAN does not consider any neurological type to be superior or inferior to any other. We do not discriminate against or exclude any Autistic person because of his or her diagnostic category, support needs, or disabilities. We oppose the practice of separating Autistics into high- and low-functioning groups, which incorrectly suggests that people function at the same level across all areas. Each of us has a unique set of skills and challenges; a person who requires assistance in one area does not necessarily lack ability in another. Functioning labels significantly downplay the uniqueness of each individual, leading to artificial and inaccurate classifications that can cause Autistic people to be denied either services or opportunities. When ASAN refers to the Autistic Community, we include all people on the spectrum regardless of their diagnostic category or their support needs.
In addition, we use the term Autistic Community to refer inclusively to people who have been identified by professionals as being on the autism spectrum and to those who are self-identified. We recognize that there are many reasons why a person may fall into one group or the other, and we respect the right of individuals in our community to make their own choices in this regard. Many Autistics were given a diagnostic label in childhood or sought a formal diagnosis in adulthood to obtain services and accommodations. Others have not done so for reasons that include financial barriers, lack of qualified professionals in a locality, obtaining sufficient accommodations on an informal basis, or the political view that our community should not have professionals as its gatekeepers. ASAN believes that all of us can and should work together in solidarity to accomplish our common goals.
ASAN's allies include many family members, professionals, educators, friends, cross-disability advocates, and others who are not Autistic but who support our struggle to overcome ignorance and to ensure equal rights and opportunities for the Autistic population. We seek to promote understanding and cooperation among the various groups that share concerns about how Autistics and all people with disabilities are treated in our society, working toward the goal of human rights for all people regardless of neurology or disability."
Updated 4/7/10
Original Post:
As a roundabout way of getting to my main point, one of my issues with Autism Speaks is that they don't speak for individuals on the spectrum; appointing Robison goes almost nowhere in rectifying that as Robison is a bit of the able politician as well in that he seeks to get everyone to like him, so that he attempts to straddle all divides, a position, that when not based on the the scientific evidence at hand, is foolhardy at best.
I suppose that if one is speaking only for oneself, choosing to include only those you wish to is fine, but when you assert that you speak for all individuals and yet shut yourself off from listening to them, you forfeit that "right." If this is indeed the case, and ASAN as an organization does not include the severely impaired within its ranks, within leadership and policy decisions, then there's a problem.
If ASAN does not represent the entire range of the spectrum, and if Autism Speaks does not, then it seems to me there is a need for an organization that does indeed do that, that is democratic in its organization. It won't solve the problem in that there will still be divisions, but it might solve the problem in everyone being heard.
We're trying to set something like that up through the creation of a facebook group called Autism Acceptance (well, truthfully, since December, Kathleen and I (and T and L of course) have been with Respect for Infinite Diversity, but there is a decided lack of drama to the idea of positive support for all people). We're trying to get all those who would be interested in actively creating and volunteering within the group to join and offer their ideas as to what they would like to see in an organization. It's my opinion that such an organization should be a mixture of parents and individuals on the spectrum, that it actually help people in local communities.
There is a place for political activism, there is a place for scientific evidence, but there is also, just as important, for actually helping people in need, for providing support structures for all members of the autism community so that they are not isolated.
We have a long way to go, and while I think some divisions are absolutely unavoidable and necessary, my thought is that if one is interested in acceptance, appreciation, and accommodation, and willing to work to make those things a reality, then the rest will work itself out in the wash.
--comment I left at The New Republic.
*name a temporary one, permanent name to be decided by membership*
