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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

  • There are different types of research.

    What tends to affect us most on here are undergraduates (and occasionally postgraduates) inappropriately using sites like this as a quarry for research material. That really shouldn't happen. Some of the perpetrators are at respectable universities that should know better. It undermines the credibility of more important research.

    A lot of research seems to be about understanding the causes and finding a cure. Also this research tends to deploy use of electrodes to measure brain response, or scanning during tests, aiming to quantify the evidence - trying to get scientifically measurable results.

    Some other research uses qualitative evidence, interviews and observations to examine behaviour. The operation of these researches seems to fall well below acceptable standards - we are seeing failure to provide confidentiality or obtain consent, or honour consent. The universities doing this are niot doing anyone any good.

    Research that might help people on the spectrum to better manage their daily lives - sadly this sort of research is not remunerative. There are no sources of funding. So very little is done.

    There is a curious aspect to research - it is about income generation - most universities and independent research centres are in it purely for the money, though they need to pay for full time and part time staff, and overheads to retain work space and equipment.

    So any research that the funding bodies, including Health Science and Social Science Research Councils, will give money to, has to meet those research councils' specifications.

    The specifications rarely have anything to do with human needs or suffering. The research has to be justified by academically defined outcomes.

    The fact that the research councils and other funders get their money largely from the tax payer seems to be neither here nor there.

    (My first post since the anti-spam device was imposed - I'm really bad at solving these puzzles - here goes.......)

Reply

  • There are different types of research.

    What tends to affect us most on here are undergraduates (and occasionally postgraduates) inappropriately using sites like this as a quarry for research material. That really shouldn't happen. Some of the perpetrators are at respectable universities that should know better. It undermines the credibility of more important research.

    A lot of research seems to be about understanding the causes and finding a cure. Also this research tends to deploy use of electrodes to measure brain response, or scanning during tests, aiming to quantify the evidence - trying to get scientifically measurable results.

    Some other research uses qualitative evidence, interviews and observations to examine behaviour. The operation of these researches seems to fall well below acceptable standards - we are seeing failure to provide confidentiality or obtain consent, or honour consent. The universities doing this are niot doing anyone any good.

    Research that might help people on the spectrum to better manage their daily lives - sadly this sort of research is not remunerative. There are no sources of funding. So very little is done.

    There is a curious aspect to research - it is about income generation - most universities and independent research centres are in it purely for the money, though they need to pay for full time and part time staff, and overheads to retain work space and equipment.

    So any research that the funding bodies, including Health Science and Social Science Research Councils, will give money to, has to meet those research councils' specifications.

    The specifications rarely have anything to do with human needs or suffering. The research has to be justified by academically defined outcomes.

    The fact that the research councils and other funders get their money largely from the tax payer seems to be neither here nor there.

    (My first post since the anti-spam device was imposed - I'm really bad at solving these puzzles - here goes.......)

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