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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

  • I think they can find a way around any boycott. A lot of research subjects are receiving treatment and are asked to voluntary submit to research - like they really have much choice. We would have to be pretty widely coordinated to have enough impact.

    I looked at Autistica's website http://www.autistica.org.uk  They fund genetic, behavioural and neurological research.

    Their research is directed at understanding causes, improving diagnosis, early intervention strategies, and databases. I don't see anything there about living with autism.

    The causal research is the Autism Genome Project and how genes affect brain development. The diagnisis project studies genetic characteristic of siblings and language in toddlers. The intervention strategies include gesture training for 4-6 year olds to improve communication (I think using electrodes to monitor brain response). They are doing research on hypersensitivity and sensory sensitivity in adults, but its a postgraduate research project trying to find out if people with autism have sensory differences from NTs.

    Now, to be honest I wouldn't want to obstruct or undermine such research. I just get the feeling the criteria dont really address people living with autism.

    The Medical Research Council http://www.mrc.ac.uk has 11 current autism projects costing £1.5m a year. These include autistic traits and foetal testosterone, episodic memory in adults, pre-school communication, twins, developing dynamic gaze processing, functional brain development in human infants, and human functional brain development over the first four years, genome project, brain anatomy, olivioceleberal networks & motor behaviour, autonomic and neural analysis.

    Again I'm sure this is all very important stuff. But there's not much in here about people living with autism and their everyday lives.

    There is a danger that we end up as laboratory rats for higher level research with outcomes decades down the line. There's nothing here for people with autism now.

    But I don't think boycotting will work. I feel this is something NAS needs to pursue. Are we benefitting at all in the short term from all this research?

Reply

  • I think they can find a way around any boycott. A lot of research subjects are receiving treatment and are asked to voluntary submit to research - like they really have much choice. We would have to be pretty widely coordinated to have enough impact.

    I looked at Autistica's website http://www.autistica.org.uk  They fund genetic, behavioural and neurological research.

    Their research is directed at understanding causes, improving diagnosis, early intervention strategies, and databases. I don't see anything there about living with autism.

    The causal research is the Autism Genome Project and how genes affect brain development. The diagnisis project studies genetic characteristic of siblings and language in toddlers. The intervention strategies include gesture training for 4-6 year olds to improve communication (I think using electrodes to monitor brain response). They are doing research on hypersensitivity and sensory sensitivity in adults, but its a postgraduate research project trying to find out if people with autism have sensory differences from NTs.

    Now, to be honest I wouldn't want to obstruct or undermine such research. I just get the feeling the criteria dont really address people living with autism.

    The Medical Research Council http://www.mrc.ac.uk has 11 current autism projects costing £1.5m a year. These include autistic traits and foetal testosterone, episodic memory in adults, pre-school communication, twins, developing dynamic gaze processing, functional brain development in human infants, and human functional brain development over the first four years, genome project, brain anatomy, olivioceleberal networks & motor behaviour, autonomic and neural analysis.

    Again I'm sure this is all very important stuff. But there's not much in here about people living with autism and their everyday lives.

    There is a danger that we end up as laboratory rats for higher level research with outcomes decades down the line. There's nothing here for people with autism now.

    But I don't think boycotting will work. I feel this is something NAS needs to pursue. Are we benefitting at all in the short term from all this research?

Children
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