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'll give you an example, when I attended a CAMHS meeting regarding the diagnostic process for one of my children, the most senior clinician (responsible for the autism pathways for the whole area of the UK where I live) pooh-poohed my statement that autism is genetically related to schizophrenia.  If you have a close relative with schizophrenia you are more than 300% likely to have an ASD.  She was clueless and there had been a variety of media articles about the link between the two conditions and three others, it wasn't only the research articles themselves.  They are just not up to date.  And even more so, on female presentation of higher functioning autism conditions.  There is no excuse for the level of ignorance and I am much more in touch with the research than most of the clinicians I have encountered.

Reply
  • I'll give you an example, when I attended a CAMHS meeting regarding the diagnostic process for one of my children, the most senior clinician (responsible for the autism pathways for the whole area of the UK where I live) pooh-poohed my statement that autism is genetically related to schizophrenia.  If you have a close relative with schizophrenia you are more than 300% likely to have an ASD.  She was clueless and there had been a variety of media articles about the link between the two conditions and three others, it wasn't only the research articles themselves.  They are just not up to date.  And even more so, on female presentation of higher functioning autism conditions.  There is no excuse for the level of ignorance and I am much more in touch with the research than most of the clinicians I have encountered.

Children
No Data