Thanks for this interesting interview, tambourine-man.
Assuming Dana Marnane was honest with you, then perhaps AutismSpeaks are doing tiny moves in the right direction. Yet, they have to make much larger moves in the right direction to be taken seriously by the Autistic Community.
Lets look at Autism Speaks annual report for 2010:
One tension that exists is whether basic research on the biology of autism or studies focused on services is more deserving. We believe we need to fund both kinds of research.
Research on the biology of autism doesn't help the Autistic Community. It merely stigmatizes us, as it implies there is something "wrong" with us.
However, over the past few years, we have been balancing this basic research with studies that are developing new service and support programs for people at all points on the autism spectrum. We have also directed more funds toward advocacy efforts and research focused on adults with ASD.
99% to biological research and 1% to researching services and support?
99% focusing on children and 1% focusing on adults?
(I'm just speculating here. I would love to get the actual data).
Among our six targeted research emphasis areas is a focus on understanding adult development, including issues related to successful outcomes, interventions and supports, and medical issues.
Lets look at your other 5 research emphasis areas:
1. Discovery of risk factors for autism, especially environmental factors and gene environment interactions
This doesn't help the Autistic Community. It merely stigmatizes us, by implying there is something "wrong" with us.
If you accept us as we are, you wouldn't use the phrase "risk factors".
Are we bad people? Is there a "risk" in parenting us?
2. Development of methods for very early detection of ASD risk
This doesn't help the Autistic Community. It merely stigmatizes us, by implying that autism is a "risk".
4. Identification of the molecular pathophysiology of ASD that can inform translational research for drug discovery or development of diagnostic methodsThis shows total disrespect to the beauty of the Autistic Community.
5. Development and evaluation of novel treatments that can address the core symptoms and associated medical conditions throughout the lifespan We need accommodations, not treatments.
6. Dissemination of empirically validated screening, diagnostic and treatment approachesSeems too vague.
We are working hard to understand the biological basis of autism as this will help us target medical treatments to the individuals who need and want them.
From what I've read and heard here on AFF, on Wrongplanet.net, at Autreat and at Autscape, these individuals are a tiny minority within the Autistic Community.
As our mission relates to “cure”, our goal is to reduce suffering associated with autism, in all its forms. Some would call that a cure. Others would call it remediation of disability. For others, it means acceptance and empowerment.
Your mission statement says, among other things, "We are dedicated to funding global biomedical research into the causes, prevention, treatments and cure for autism".
Your mission statement does not mention accepting us as we are, nor does it mention empowering us, nor does it mention providing us any kind of services, supports, or accommodations.
there are individuals severely affected who have significant medical conditions, like GI distress and have never spoken. For those individuals, the prospect of a cure for autism is really important because to that person “cure” means being able to communicate and free of pain.
Curing medical conditions which are common among Autistics is totally different from "curing" Autism.
Nobody objects to curing such medical conditions, but you need to be explicit about the huge differences between such conditions and autism itself.
We wish to celebrate the valuable human characteristics of autism, as you say, by helping each person with autism use those characteristics in the most successful and rewarding way possible.
So why don't you mention this in any of your promotional materials?
For those who are self-advocates and just want to be accepted for who they are – we salute you and we would never try to change you. In fact, we desperately need your voice to help bring even more awareness, understanding and compassion to those who are not touched by autism.
If we give you our voices, then how much funding will you give to our self-advocacy projects?
Will you help us fund Aspies For Freedom?
Will you help us fund Autreat?
Will you help us fund the Autistic Self Advocacy Network?
Our main goals moving forward are:
• Federal legislation to cover autism insurance – in the meantime we will continue going state-to-state.
• Reauthorization of the Combating Autism Act to provide critical government funds for research and services for autism.
Would you, as a woman, support the Combating Femininity Act? You wouldn't? You would feel threatened by such an act?
If so, then how can you expect Autistics to support the Combating Autism Act?
Can't you see such an act threatens our very core of existence?
• Creating a more compassionate world for all those with an autism spectrum disorder.
If you are serious about this, then how about eliminating the word "disorder"? (many of us are more ordered than you are). We don't like being stigmatized.
In the section "How Common is Autism", on AutismSpeaks "About Autism" page, (as well as on 2010's annual report) you write:
"Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined". Can't you see how offensive it is to Autistics? Would you write the same about dyslexia? about femininity? about other minority conditions?
Is our blood less red than yours?
Are our feelings less valuable than yours?
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