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 have heard from an acquaintance who is connected to the NAS campaigns department that they tend to cherry pick the things they think they can 'win' at.  I have emailed them in January and April this year regarding the growing problem of parents of autistic children suffering false accusations by state services and they didn't even respond.  There was a petition about it to Mark Lever on Change.org which gained 1,063 signatures too.

    I've been trying to Google where NAS funding comes from but can't find anything.  I wonder whether the Government contributes funding and that the NAS is therefore very careful about which boats it rocks.

Reply
  • I have heard from an acquaintance who is connected to the NAS campaigns department that they tend to cherry pick the things they think they can 'win' at.  I have emailed them in January and April this year regarding the growing problem of parents of autistic children suffering false accusations by state services and they didn't even respond.  There was a petition about it to Mark Lever on Change.org which gained 1,063 signatures too.

    I've been trying to Google where NAS funding comes from but can't find anything.  I wonder whether the Government contributes funding and that the NAS is therefore very careful about which boats it rocks.

Children
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