Common Knowledge

Autism Speaks – Open Access Policy

The good people at Autism Speaks have announced a major policy shift on open access. Basically they’re saying if you take their money, you have to make the research open. I love this for all sorts of reasons. First, it’s smart. Opening up research to more readers means you increase the chances of someone innovating on top of that research. Second, it’s a good market indicator. Legislation and mandates are all well and good, but there’s nothing as powerful as the customer standing up and changing the deal in the market…

I guess I delayed my post on this for personal reasons. Autism is a painful thing for me. My oldest sister, Kathy, is profoundly autistic. I have trouble talking about and writing about it, but here goes.

Autism is incredibly hard for families. In the mid 60s, when Kathy was born, doctors might blame the disease on the mother and father for moving the family too often. That kind of ridiculous theory has thankfully fallen by the wayside, but not by that much.

Kathy has a lot of the typical phenotypic signs. She doesn’t interact very much, but she loves music – she rocks in the classic manifestation to Jerry Jeff Walker in particular – and she loves to have words spelled for her, to watch rollercoasters, and to watch the washing machine go with the lid up. She pulls for the home team when she watches football, and she loves Dr. Pepper. She works at a workshop, and she lives semi-independently with care. She doesn’t laugh a lot but when she does it’s unfiltered by the kind of screens the rest of us put up over time.

But we don’t know why it happened to her and not to me. We have some theories – thyroid most likely – but nothing more. We don’t know why my other sister, whose husband also has an autistic sister, didn’t have kids with autism. We don’t know if I will. Autism is a puzzling and complex disorder.

If we’re ever going to understand it, and treat it, it’s going to take a lot of smart people using every tool available. If they have to negotiate terms and conditions every time they want articles or data it’s not going to happen. And it’s ridiculous that a family in need can’t read the literature about the disease, to help them through a process that is almost indescribably painful.

Open Access to the literature is a good start. And Autism Speaks is a great organization. My hat’s off to them for this. We talked about this at our Thanksgiving table, and gave thanks that the next generation of families with autism won’t have to keep running into the most frustrating signpost of all on the internet: access denied.

I am now off to sign up for the Autism Genetic Resource Exchange (another program from Autism Speaks – these folks are all about good, open research).

Comments

  1. #1 Maddy
    December 7, 2008

    Open access is a great break through and thank you for sharing your personal story.
    BEst wishes

  2. #2 Tanners Dad
    December 7, 2008

    It is just a shame that the thought process going in is not as open minded with Autism Speaks. Policies of genetic research over practical family support research has led to a division in the community. It is sad when a child in a community can not afford basic therapies and the community is sending of 10′s of thousands of dollars to NY. A lot of their research will lead to a test that causes parents to abort very viable people. We must demand the front end be as open as the back end. Trying to play up to the mainstream just to get funding and shying away from issues that matter to parents is not speaking for many families.

    Families need help today. Not another researcher telling me that my son does not mimic me when I yawn. I would have taken the money for that one. Frustrated… You bet.

    Never should an organization be spending thousands upon thousands in rent or showing $50,000 to rent a plane on a balance sheet during the economic crisis at hand.

    It is time for Autism to listen and act on behalf of the families dealing with Autism. Remember the ones who founded the first walks and ask if they are any better off today? Sorry to get on my soap box.

    http://www.causecast.org/member/tanners-dad

  3. #3 Socrates
    December 8, 2008

    There are very few of us on the Autistic Spectrum feel that Autism Speaks is a “great organisation”.

    We are to them, a pathology to be eradicated from the gene pool.

    The concept of autism today is based on gross behavioural abnormalities, stemming from a underlying neurological differences. The same degree of difference can have two completely different presentations, and possibly be non-pathological.

    Autism Speaks seek the eradication of of a set of genes that in some combinations causes cause profound handicaps, and in others, great talent and value.

  4. #4 Kerby
    December 12, 2008

    Well said, Socrates. I agree.