Good news- Spectrum 10k study has been postponed

Because such studies can be done, they will be done. This being acknowledged, the question for autism advocacy groups and the autistic community is, 'who do you want to do the research?' Personally, I would rather it be done by relatively unbiased academics in a country which enforces ethical standards, than by a commercial enterprise, an autism hostile entity (such as Autism Speaks), or in a country with an appalling human rights record, like China.

I would rather it be done with full, advance consultation and involvement with autistic people and preferably led by autistic researchers who genuinely have our interests at heart.  I'd also prefer it to look at areas of immediate concern and help to autistic people, rather than give yet more focus to identifying genes (as if they're going to be able to pare it down to just a few genes anyway). 

Plus, for me at least, it's more about each of our personal decisions about whether to be involved or not and ensuring that these decisions are as well informed as possible.  Clearly I'm not sending them my DNA nor that of any family members but I accept that others might look at the arguments and counter arguments and  come to a different conclusion.     

Jenny Butterfly said:

I would rather it be done with full, advance consultation and involvement with autistic people and preferably led by autistic researchers who genuinely have our interests at heart. 

Yes, but we are talking about a scientific - genetics/molecular biology - study and not a sociological study. I don't think that the pool of autistic researchers in relevant disciplines is all that large.

I would certainly hope so as I think change is needed.  (And TW for suicide reference).

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 I'm late diagnosed myself and, whilst I probably appeared to be moderately successful, the cumulative damage to my mental health, often hidden behind closed doors, really took its toll.  I also took a lot of blame for issues which, had I been identified, would have been clearly covered by disability discrimination legislation.  And I'm still left with nightmares about some of my former workplaces. 

One of my (unidentified but very probably autistic) cousins took his own life, after years of appearing to be very successful.  On the face of it, nobody could understand why he drank that weedkiller when things were apparently going so well.  And now I think it can be pieced together.  So it all really matters to me.

Overall, there are millions being spent on research like this while people's basic needs aren't being met.  And yes, some research is "pure" and some applied, and only history will tell which has been more crucial, but either way, consultation and inclusion are very much needed as far  as possible plus, where big money is being spent, it seems a good idea to consider the here and now needs of the studied group and prioritise in the light of those.

I would certainly hope so as I think change is needed.  (And TW for suicide reference).

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 I'm late diagnosed myself and, whilst I probably appeared to be moderately successful, the cumulative damage to my mental health, often hidden behind closed doors, really took its toll.  I also took a lot of blame for issues which, had I been identified, would have been clearly covered by disability discrimination legislation.  And I'm still left with nightmares about some of my former workplaces. 

One of my (unidentified but very probably autistic) cousins took his own life, after years of appearing to be very successful.  On the face of it, nobody could understand why he drank that weedkiller when things were apparently going so well.  And now I think it can be pieced together.  So it all really matters to me.

Overall, there are millions being spent on research like this while people's basic needs aren't being met.  And yes, some research is "pure" and some applied, and only history will tell which has been more crucial, but either way, consultation and inclusion are very much needed as far  as possible plus, where big money is being spent, it seems a good idea to consider the here and now needs of the studied group and prioritise in the light of those.