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Get involved in the Adult Autism Spectrum Cohort project

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The Adult Autism Spectrum Cohort project is about engaging autistic adults and our relatives in research. It is a lifespan project, so they are interested in people participating in surveys over a long period, to see how our lives change as we get older. The NAS is one of the National Partners of the project.

At the moment, they would like more relatives and partners of autistic adults to join, to talk about how being close to an autistic adult has affected your own life. 

They are also looking for more autistic adults to join. Over 300 have already started and the feedback so far is good. They update results onto the website. 

You can also follow the project on Twitter at @uk_asc

Parents

  • @clovis

    Interestingly enough, the first question in the documents they linked me to after asking for more info, asked explicitly about which terminology was used for our official diagnosis (if we have one), and later on, what terminology we prefer personally.

    I recognise that there are a wide variety of opinions of this, and I'm not keen on the "disorder" label either.  However, my guess is that they have used that term because it is still the most common term used by NHS services and the research ethics bodies.  (It's used in my autism evaluation report, for example).

    One thing I will say for them, is that the consent form is very thorough - they do seem to have made an attempt to allow people to participate to whatever degree they are comfortable, and they allow people to appoint a proxy, so that people with serious communication impairments needn't be excluded.

    I'm still working through the initial material, and I have not decided with 100% certainty yet whether I'll go ahead.  I just thought I'd let people know what my first impressions are now that I've seen in more detail  what exactly I would be signing up for.  I'll be sure to let people here know if I discover any other contentious opinions in the various documents.

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  • @clovis

    Interestingly enough, the first question in the documents they linked me to after asking for more info, asked explicitly about which terminology was used for our official diagnosis (if we have one), and later on, what terminology we prefer personally.

    I recognise that there are a wide variety of opinions of this, and I'm not keen on the "disorder" label either.  However, my guess is that they have used that term because it is still the most common term used by NHS services and the research ethics bodies.  (It's used in my autism evaluation report, for example).

    One thing I will say for them, is that the consent form is very thorough - they do seem to have made an attempt to allow people to participate to whatever degree they are comfortable, and they allow people to appoint a proxy, so that people with serious communication impairments needn't be excluded.

    I'm still working through the initial material, and I have not decided with 100% certainty yet whether I'll go ahead.  I just thought I'd let people know what my first impressions are now that I've seen in more detail  what exactly I would be signing up for.  I'll be sure to let people here know if I discover any other contentious opinions in the various documents.

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