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.