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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

  • Excellent points IntenseWorld and Longman.

    My niece had a very bad experience with CAMHS -they weren't aware of the different way that autiism presents in girls and would not listen when we tried to inform them.

    We often get asked here to participate in research but local groups get frequent requests too. There is a huge amount of research done that does little but help its authors up the academic greasy pole.

    But I think we have the power to change the focus of research. We don't need the researchers but they need us - no willing autistic participants = no research project. If we only participate in research that has the potential to help us then we can shift the balance. We should be asking What's in it for us?

Reply

  • Excellent points IntenseWorld and Longman.

    My niece had a very bad experience with CAMHS -they weren't aware of the different way that autiism presents in girls and would not listen when we tried to inform them.

    We often get asked here to participate in research but local groups get frequent requests too. There is a huge amount of research done that does little but help its authors up the academic greasy pole.

    But I think we have the power to change the focus of research. We don't need the researchers but they need us - no willing autistic participants = no research project. If we only participate in research that has the potential to help us then we can shift the balance. We should be asking What's in it for us?

Children
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