Oops!

I posted a follow up to “Who and What drives Autism Research that seems to have been swallowed up. It’s late and here is the short version.

Autism Diva has written a great post about the lack of autistic input into policies that affect autistic people and Mitzi Walz wants to know why learning disabled people are listened to and autistic people are ignored.

I’ve decided to look at why the direction of autism research differs so greatly from learning difficulty research, and what we could do about it. For example, particpatory (and occasionally, emancipatory) research designs are increasingly common in the LD world, with organisations of people who have intellectual disabilities participating in ethical vetting, determining research directions, and ensuring that research undertaken will actually be of direct benefit to themselves. This isn’t happening in autism research.
I’ll be looking at lots of factors, but I suspect that a major one is the lack of representation of organisations of people with autism in the research community, and nonexistant (or tokenistic) representation of individuals with autism on the boards/advisory panels of research-focussed autism organisations like NAAR and CAN. I’ve just written a paragraph that starts with

“most, perhaps all, of the organisations founded to drive autism research over the past 15 years do not have people with autism or Asperger syndrome on their governing boards or advisory committees”.

I can substantiate this with NAAR and CAN–do you know of ANY research- focussed autism organisation that differs from this norm? I’m not counting organisations that advocate for improvement and redirection of autism research, just those that are actually funding/driving research.
I would appreciate any information or help that you can offer.

Mitzi can be reached at Sunderland University.

One autism research org that looks like it is getting the balance right is Research Autism. They have a thing called the Collaberative Autism Research Forum where autistic people and their families come together with clinicians and scientists to discuss priorities for research. The first forum was on sleep problems. The next is on positive outcomes for autistic adults.

Research Autism has a very positive mission statement.

Research Autism (the Trust) is an independent, non-profit making charitable Trust committed to improving the lives of individuals on the autistic spectrum through research into therapeutic or remedial interventions. To this end the Trust will raise funds, undertake, support or cause scientific research to be carried out into the effects of therapeutic or remedial interventions in autism and related conditions.

Our priority will be those interventions intended to make a significant impact on the disabling effects of autism and related conditions and promote and enhance the quality of life of individuals and their families. It is part of the mission of the Trust to disseminate and publish the findings of research and to bring together leading researchers in the field.

We believe in the value of people on the autistic spectrum and the contribution they make to the community. We also recognise the real difficulties they face and their need for assistance to overcome these in realising their potential. We will work with the broad academic, professional, business and wider communities nationally and internationally, in support of our aim.

That sounds promising to me.

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10 thoughts on “Oops!

  1. My father was a researcher and university professor specializing in neurological learning disorders. He told me that the greatest problem that he had was that he could tell politicians what needed to be done, how it could be done and even what it might cost but he was always in conflict of interest because of his job. He would tell every complaining parent that they needed to start an organization that would do what he could do. He would let them know how and what to do to get it started. He did this for 15 years until one morning he told the same thing to the right mother. She drove from Montreal to Quebec City that same day and was in the Minister of Education’s office and in his face that afternoon. The organization is province wide now and growing fast.
    My advice- one day, one person will be that right person and so keep talking.

  2. Hawise: “He told me that the greatest problem that he had was that he could tell politicians what needed to be done, how it could be done and even what it might cost but he was always in conflict of interest because of his job. He would tell every complaining parent that they needed to start an organization that would do what he could do. He would let them know how and what to do to get it started. He did this for 15 years until one morning he told the same thing to the right mother.”

    This is probably the approach I have to take as an educational psychologist. I’m currently about to try to get a short descriptive project going at the local adult education college, and look into the very-poorly-researched area of special educational needs; there are just two organisations here in the town I live in: one for the developmental difficulties (ADHD, autism, dysphasia and the like) and one for the specific learning difficulties (dyslexia, dyspraxia, dyscalculia and so on). It strikes me that, the best way to effect change (with my limited Finnish skills) is to do things that allow the members of these groups to gain skills and knowledge that empowers them to do what that mother you mentioned did… actually go in and take on the people responsible.

    I wonder if the researching autism trust would fund me on this (not holding out much hope… would they fund an autistic practitioner-researcher ed-psych working with his own sort?). The tendency is for such organisations not to take autistic practitioners-researchers seriously.

    All kudos to your dad though, Hawise; sounds like he was a patient man. I’d like to have patience like that.

  3. It wasn’t patience but experience. He recognized that there is an element of chance even in well-organized research. He had luck with a Mom and he had luck when one of the Ministers of Education had a family predisposition to a learning disorder and ttherfore several nephews in the system. Nothing works better than self-interest. A researcher needs allies, I hope that you find the backup that you need to get the ball rolling.

  4. What you need to find is a politician with a vested interest. If you can find one who is autistic or has autistic relatives that will go along way in helping to motivate the organizations. It is a politician’s job to push things along, it is your job to make them push in the direction you want them to go.

  5. Hawise,

    Thanks for those two posts. The extra info there is definitely useful, and is certainly somethign I can pass on to the groups involved.

    “It is a politician’s job to push things along, it is your job to make them push in the direction you want them to go.”

    Exactly. This confirms to me that I am probably doing the right thing.

  6. As it happens I have been up at Lancaster Uni with Mitzi this weekend. And there has been one autistic voice speaking out to challenge the complacency of those physical “impairment” fossils.

    I told them (during heckling sessions) that there darling Union of the Physically Impaired against Segregation, was essentially segregating in its failure to grasp disability beyond there own personal constructs.

    Anyway before long anyone will be able to read my paper, as I expect it will be up there with the rest of them on the Leeds Disability Reserch Unit site, that is when I have rewritten it again, as I had to do a lot of last minute revision to make it presentable.

    I think my paper got a fair hearing, I taped it and just could not believe listening back, how strong my accent sounds, so I am not just an autistic cat amongst the academic pigeons, I am a working class one too (so often class is not part of the discourse of disability studies.

    Any way not only did they listen to my paper, but I made them laugh with my slides.

    Funny enough I did not know who most of these people were, but there were plenty there who knew who I was from my emails on the disability studies list.

    As for David the psycobollox, I can see no reason why Reserch Autism would not accept a proposal from a suitably qualified autist who was able to carry out what he promised, providing the reserch proposal was a good one that met with the other criteria.

  7. Hi Larry,

    “As for David the psycobollox, I can see no reason why Reserch Autism would not accept a proposal from a suitably qualified autist who was able to carry out what he promised, providing the reserch proposal was a good one that met with the other criteria.”

    I wish I had that confidence. Certainly my experience here in Finland has been that ‘autistic=useless’, and it is an attitude inherent in the legal system here too (illegally too, given that it is one formed entirely on prejudice).

    How’s your work going?

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