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
  • Well spotted....The Conversation is not on my reading list. And thanks for the other links.

    Thing is it is all talk, posturing. They've done a survey - been told that people feel they are giving information and not getting anything back, but they aren't saying what they are going to do about it. If they recognise the need, and the importance of consultation, there ought already to be an initial event in the making.

    CRAE (The Centre for Research into Autism and Education) is the organisation she represents http://crae.ioe.ac.uk but it is not the right platform for getting anything done.

    Some nice projects though - crae.ioe.ac.uk/.../understanding-the-lives-of-young-people-with-sen looks like a good idea. crae.ioe.ac.uk/.../a-future-made-together directed at real needs might get some answers. But they're small project funded - nowhere near the big battalions like Medical Research Council's £1.5m a year.

    We need to collar MPs and get them to ask questions - NAS Campaigns could set something up for us......

Reply
  • Well spotted....The Conversation is not on my reading list. And thanks for the other links.

    Thing is it is all talk, posturing. They've done a survey - been told that people feel they are giving information and not getting anything back, but they aren't saying what they are going to do about it. If they recognise the need, and the importance of consultation, there ought already to be an initial event in the making.

    CRAE (The Centre for Research into Autism and Education) is the organisation she represents http://crae.ioe.ac.uk but it is not the right platform for getting anything done.

    Some nice projects though - crae.ioe.ac.uk/.../understanding-the-lives-of-young-people-with-sen looks like a good idea. crae.ioe.ac.uk/.../a-future-made-together directed at real needs might get some answers. But they're small project funded - nowhere near the big battalions like Medical Research Council's £1.5m a year.

    We need to collar MPs and get them to ask questions - NAS Campaigns could set something up for us......

Children
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