Research - do we benefit?

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 agree that researchers are often not autism-aware. And because of this they do not research things that would be of use to us in our everyday lives. Autistic adults get very little help in coping with the world and research could help us get better sleep, use our talents better, cope with social interactions better etc.

    If we keep participating in pointless research projects we are doing ourselves a disservice. I think we should ask researchers who want our help to explain how their research will improve the daily lives of autistic people. Once research has helped us with the big problems, they can go back to measuring eye movements or showing us dancing triangles.

Reply
  • I agree that researchers are often not autism-aware. And because of this they do not research things that would be of use to us in our everyday lives. Autistic adults get very little help in coping with the world and research could help us get better sleep, use our talents better, cope with social interactions better etc.

    If we keep participating in pointless research projects we are doing ourselves a disservice. I think we should ask researchers who want our help to explain how their research will improve the daily lives of autistic people. Once research has helped us with the big problems, they can go back to measuring eye movements or showing us dancing triangles.

Children
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