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Research - do we benefit?

electra

Hi

There are a huge amount of research projects asking for our participation. I cannot see that most of this research is of any benefit to autistic people.

I see no research on the problems that many of us face everyday such as how to get better quality sleep or research into our abilities rather than our perceived deficits. Instead we see research into how we see animated triangles. Then because we see them as just moving triangles we are labelled as lacking and are no further forward. As an aside, if you ascribe emotions to animal behaviour that is anthropomorphism and is frowned on by scientists. But if you ascribe emotions to triangles that is apparently normal and a good thing.

Is there a case for boycotting research that cannot show a direct benefit for us? The research cannot take place without our participation and much seems to be carried out purely because it attracts funding and gives someone fodder for their PhD. Perhaps a boycott would lead scientists to focus on our needs and foster an awareness that we are more than lab rats.

Parents

  • I don't think it's necessarily the research itself that's always the problem, but what is done with the research results - who it is transmitted to.  By far, the biggest single problem is lack of autism awareness and when this is from the very professionals that are supposed to be recognising and diagnosing the condition it is shameful.  They aren't made to keep up to date on research findings and often have very outdated and stereotypical views on it, which can prevent people getting diagnoses.  Some research is just stupid, such as the study that found autistic people don't daydream.  This is of course ridiculous.

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  • I don't think it's necessarily the research itself that's always the problem, but what is done with the research results - who it is transmitted to.  By far, the biggest single problem is lack of autism awareness and when this is from the very professionals that are supposed to be recognising and diagnosing the condition it is shameful.  They aren't made to keep up to date on research findings and often have very outdated and stereotypical views on it, which can prevent people getting diagnoses.  Some research is just stupid, such as the study that found autistic people don't daydream.  This is of course ridiculous.

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