Autism Science Foundation

20 Apr

There’s a new autism research organisation in town – the Autism Science Foundation.

The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization will also provide information about autism to the general public and will serve to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

You might expect me to have mixed opinions regarding this organisation and that is the case. On one hand, the are very very positively consigning the autism/vaccine episode to the scientific dustbin where it belongs.

Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

Two thumbs up to that. My own opinion is that it is not just a waste of research dollars it is also an insulting slur to autistic people to be denigrated as ‘poisoned’ in some way.

So thats the good. And that bad? Well, consider this:

Autism Spectrum Disorders are characterized by significant impairments in social interaction and communication skills, as well as by the presence of extremely challenging behaviors. Such behaviors include stereotyped motor behaviors (hand flapping, body rocking)

I don’t consider hand flapping or body rocking to be ‘extremely challenging behaviours’. I consider them to be the typical movements of an autistic person either communicating or adjusting to an environment or both. I have never challenged my own autistic child’s hand flapping or body rocking and never will.

Moving on, who is on this Foundation? Firstly and most familiar to me is Paul Offit. I think this is an *excellent* start. Karen Margulis London I know next to nothing about. Same with Michael Lewis. That leaves one other.

As we all know Alison Tepper Singer left Autism Speaks earlier this year due to its anti-vaccination leanings. As we _also_ all know, prior to that she was best known to the autism community as one of the central figures in the very unfortunate ‘Autism Every Day’ video.

Ms Tepper-Singer and I have been communicating via Facebook for the last few weeks. The ‘Autism Every Day’ video has been discussed as well as a few other things. I also discussed this with a few close friends (some autistic, some not).

In the interest of totally coming clean, I’d like to therefore say that we have been talking about the ASF for a few days. I have made clear to Ms Tepper-Singer that my clear priority is the friendships I have and community I am part of. The website is very new and therefore the language on it could be very much better and should be for example. This is one case of where I would very much like to see more respectful and accurate language being used.

But overall, I would like to see an autistic person in at least the same position as I am – advising. I was therefore very heartened to learn that that is already the case. I don’t think it would be fair for me to name that person and I will ask that if anyone does know then please do _not_ name them in the comments or elsewhere. I see forced ‘outing’ as akin to bullying so please refrain.

This is going to be a surprise for a lot of people I guess. The man who created the petition that has gained nearly 2000 signatures speaking clearly against Autism Speaks, ‘Autism Every Day’ and Alison Tepper-Singer in particular colluding with that same Alison Tepper-Singer.

All I can tell you is why I am doing this. I am doing it because I think that to have someone(s) on the inside is much more productive than being on the outside. This community has been passed over time and again and now we have a legitimate organisation that I believe _wants_ to learn to do the right thing fulfilling the mantra of ‘nothing about us without us’ and doing it in a way that is dedicated to good science, not harmful and costly quackery.

Could I be wrong? Of course I could. And if I am then I will step back and not participate. But I think that the only we way we can achieve our goals is to take chances now and then. I will be utterly transparent and as I have told Ms Tepper-Singer no doubt I and the other adviser(s) will have plenty to say. And if things do not work out then the onus falls on me to explain myself and me alone. There will be no comeback on the neurodiversity community.

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9 Responses to “Autism Science Foundation”

  1. thejypsy April 20, 2009 at 23:29 #

    What do they have to say about their support of ASAT?

    • Kev April 20, 2009 at 23:32 #

      To me? Nothing, but to be fair I haven’t asked. Something else for the list.

  2. autismnostrum April 21, 2009 at 03:58 #

    “I think that to have someone(s) on the inside is much more productive than being on the outside. This community has been passed over time and again and now we have a legitimate organisation that I believe wants to learn to do the right thing fulfilling the mantra of ‘nothing about us without us’ and doing it in a way that is dedicated to good science, not harmful and costly quackery.”

    Thank you. More of this, please.

  3. kathomar April 21, 2009 at 13:56 #

    I agree, having someone on the inside-is so much more productive. Always being in opposition gets nothing done. Just as a side note..has there ever been a follow up done on the families profiled in “Autism every day”? More importantly-the children profiled?

  4. dealingwiththeday April 21, 2009 at 15:50 #

    Someone on the inside of an organization like this to advise from a common sense science angle has got to be a great leap forward. It has always worried me that I see the same names coming to the fore, which always begs the question of their agendas. Outsiders often have clearer vision. I would like to wish you all the best in this endeavour.

  5. Clay April 21, 2009 at 19:22 #

    I did credit Ms Singer for resigning AS, and for her statement that the autism/vaccine question has been “asked and answered”, but that doesn’t mean I trust her yet. I’ll give her the benefit of the doubt until she can prove she’s wised up or not. I must be the most curious Aspie around, I’m just burning to know who will represent us. I can think of a few Great candidates, and a few that would make me very disappointed. In any case, I’m very hopeful for this new organization, that it will accomplish its stated objectives, and just be the sort of organization that we can support. Dr. Offit is a good start toward that.

  6. Louise Bach Capps April 21, 2009 at 23:57 #

    Most of the negative stuff people believe about autism stems from the “damaged” and “poisoned” labels from anti-vaccine groups like Generation Rescue. If the Autism Science Foundation never does another thing, it has, in my opinion, already done a lot of good for autistic people simply by taking that vaccine garbage off the table.

    Not everybody, no matter how well-meaning, understands the needs and behaviors of autistic people. A special ed teacher, for example, told my son, who was three or four at the time, that he looked “silly” when he flapped his hands. This was meant to shame him into stopping that particular behavior. I don’t think that teacher hated autistic people, or wanted to turn them all “normal.” I think she simply didn’t know any better. One way to help people “know better” is to share information with them. Some will listen.

    I have had several conversations with Alison Singer on the subject of neurodiversity, and I do believe she is completely committed to listening to all sides of the woo-free autism community. By essentially saying, “Your autistic child is not poisoned with heavy metals from a vaccine. Do not chelate him,” Alison Singer and the Autism Science Foundation are standing up against the quacks using autistic children as human guinea pigs. That’s a enormously welcome and positive message, and will hopefully spare many, many autistic kids from the pain and misery of such stupid “treatments.”

  7. Roger April 22, 2009 at 03:01 #

    It is not enough to have one autistic person on these boards,that’s tokenism.You need to have at least two,possibly three.One representing each side of the pro-cure and anti-cure debate.Ideally you should also have a third,someone who has an inherited condition that causes autism,and other medical problems as well,but that might be too much to hope for.

  8. Kev April 22, 2009 at 07:15 #

    Roger I totally agree – the more autistic people the better. I don’t want to put vague promises out there but I do believe the news on that score is good rather than bad.

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