Advocacy Starts Right Now
October 26, 2006 by Kristina Chew, PhD
Filed under Health
In the past two months, a number of new theories for “what causes autism” have been proposed: iPods and cell phones, older fathers, TV, infertility. These are in addition to more long-standing theories, such as the MMR vaccine and mercury poisoning via the preservative thimerasol. It does seem as if finding out the cause of autism—perhaps leading to a cure for autism—-is thought of as the reason that someone could win a Nobel Prize, or at least be chosen to be the next Woman or Man of the Year.
A lot of typing across the Internet has occurred in support and in critique of finding a cause for autism. And it seems to me that those who focus most of all and even solely on finding “the reason” a child has autism, have their eyes on that Nobel or that Time magazine cover but not on what I think is the real prize.
I mean on autistic persons, like Charlie. On what we can do for Charlie and kids and persons like him today, right now, right this moment. On what we can do that both takes into account neurological differences and an individuals’ particular needs and that encourages someone like Charlie to be challenged and to learn.
It is a challenge. It is not simply the theme of tomorrow’s Autism and Advocacy Conference, it is what we hope to learn more about and to start doing now.
My husband Jim Fisher, who conceived of, raised funds for, organized, and is directing the conference, spent the last few hours doing just this. Kassiane Sibley of The Rettdevil’s Rants, is one of our speakers tomorrow; Kassiane’s flight was cancelled (no reason given from the airline). Kassiane has chronicled a previous experience with the airlines before. Jim was able to get her on another flight but then had to make sure that an escort be provided to help her from one connecting flight to another—-and that that escort could carry a sign with her name on it.
The airlines refused. Why not just talk to her, as to any adult.
Jim insisted on the sign, and on not too much talking from a totally new and strange escort person.
Several, several no’s and more later, Jim got the right arrangement made and we will be meeting Kassiane at the airport tonight, if a bit later than planned.
Advocacy starts right now. With you. With us.
Good for Jim. The first three or four “no’s” should always be considered just a warm up for the main event. The sooner you get them and the other pre-scripted reasons out of the way, the sooner you can get to someone who will listen.
Cause? I still don’t think there’s a single unique cause for autism. The spectrum is so wide and those on it vary so much, how could there be just one cause? In my child’s case, it may be genetic. His blindness is caused by a genetic trait, and many people with this form of blindness have some form of autism.
Daisy, interesting—a friend has a sister (by adoption) who is autistic and blind; I need to learn more about her story.
Mike, thanks for cheering us on!
You are so very right to say that these people who have their eyes on a Nobel prize are missing the true prize- the uniqueness & diversity of the human race. There are times when this disregard for the value of human life seems to me an equal danger to humanity as the threat of nuclear war…
I have yet to participate in the local Autism Walk (to benefit Autism Speaks) because I am wary of the way these large sums of money are being used. It seems (and please correct me if I’m wrong) that most of the money raised by this organization is used for autism research of some kind or another. But is any of the money being used to help people who already have autism? What about people who can’t afford ABA or other therapies, who cannot afford private institutions, who cannot afford private schools that they so desperately need? My fear is that autism will end up like Down Syndrome, where the research peaks with a prenatal test for the disorder and selective abortions are used to thin out the gene pool. Meanwhile health insurance companies will keep refusing to pay for treatment for the few “bad seeds” that make it to term.
Micki,
I spoke up during the advocacy panel at the conference to make exactly your point: that we all need to think more critically about where money we may raise or contribute “to do something about autism” goes, and about what the aims, goals, and means of the recipient organizations are. Is the organization’s approach to publicity and autism awareness constructive, or destructive, to the long-term interests of autistic people themselves, particularly as the cohorts of autistic children age into adulthood, year by year? Does the organization have autistic people in substantive roles in its governance? Does it listen to, and *implement* the feedback and constructive criticism it gets from autistic people?
The answers to these questions for Autism Speaks are at present not very promising. The corresponding answers for the Autism Society of America are slowly becoming more positive, as increasing numbers of autistic adults and their allies work within the organization to push forward the long gradual process of change. (I once characterized ASA as the “great big aircraft carrier of the fleet” of autism organizations, and of course it takes lots of tugboats in the water and lots of energy and time to turn around an aircraft carrier. There are many degrees of arc left to go in the process of turning the ASA around.)
My hope regarding Autism Speaks is that those within its membership, within its pool of contributors, and perhaps even within some layers of its governance, who have begun to recognize the importance of changing the answers to the questions above, thereby becoming *allies* to autistic self-advocates and to the autistic self-advocacy movement, will begin to work within the organization much as has begun to happen within the ASA.
A propos the comparison to Down Syndrome: a chilling statistic I came across is that despite the advances and knowledge available nowadays regarding prognosis and quality of life, 95% of trisomy-21 pregancies in the US are nevertheless aborted. The lesson to be learned is that “developing better genetic counseling” is not going to be sufficient to prevent similar outcomes once genetic markers for autism begin to be found. Most of those pregnancy termination decisions in Down Syndrome are made open-and-shut without the benefit or even the perceived *need* for genetic counseling and further education regarding prognosis and quality of life.
Judith Badner, MD PhD, at the University of Chicago, has drafted a position statement on genetic discoveries in autism that is well worth reading — and signing. It can be viewed (and signed) at http://psy-pc120.bsd.uchicago.edu/~jbadner/autgen.htm
– Phil Schwarz
Vice-president, Asperger’s Association of New England
AS father of an autistic son
Good for Jim, for getting past the “no”s.
.
That is the stuff of which allies to autistics are made.
Within the community we sometimes jokingly-but-appreciatively characterize people developing and flexing good ally skills as “high-functioning non-autistics”; I think such a diagnosis seems warranted here
Micki, I have wondered the same about Autism Speaks—-there are more ways than “research for a cure” to use $$$$.
Phil, strategy for “getting” to Autism Speaks would be…….. I am thinking!
Micki: You are correct that donations to Autism Speaks are being used (through its affiliate NAAR) to develop a prenatal test. One of the leading researchers, Dr. Joseph Buxbaum of the Mount Sinai School of Medicine, gave an interview last year in which he frankly admitted that a prenatal test was the ultimate goal:
http://www.msnbc.msn.com/id/7013251
I find it very frightening that there are so many people who see nothing wrong with eugenics.