Good news- Spectrum 10k study has been postponed

The self appointed Twitter elite  wanting to dictate,per usual, what does or doesn't happen. That puts me off the campaign to stop the research straight away.

And apologies, I meant to come back to this and explain why I feel the way I do about the words "self appointed Twitter elite".  

I don't use Twitter so can't comment on that aspect, but many of those who oppose this research are well read, well written (blogs and websites), some are published and some are researchers too, so to me they don't seem to be any more "self appointed" than the researchers themselves (who, being non autistic, might have found it somewhat easier to take the conventional routes through their lives and careers).  They make some very good points here, which I believe anyone wishing to be involved should take into account, and I'm very grateful that they're making them. 

I also don't feel dictated to at all, which has been the uncomfortable feeling I've had during my family's experience with mental health services.  And my purpose in highlighting the issues is likewise not to dictate, more to inform, especially since S B-C's views are often taken as gospel and promoted via his presence on the NAS as a vice president - his views are basically given priority (likewise I'm not clear why Sophie Wessex is a patron but that's a separate matter).        

I increasingly feel like an autistic square peg trying to fit into  an autistic round hole i.e swimming against the relentless tide of popular, though not necessarily more worthy,autistic opinion. It has me wondering whether I should quit places like this, or at best go into lurk mode-only stepping out of it to occasionally  to give a lightweight response to a lightweight thread. A thread such as this adds to that feeling. That yet again I don't really fit in.

I increasingly feel like an autistic square peg trying to fit into  an autistic round hole i.e swimming against the relentless tide of popular, though not necessarily more worthy,autistic opinion. It has me wondering whether I should quit places like this, or at best go into lurk mode-only stepping out of it to occasionally  to give a lightweight response to a lightweight thread. A thread such as this adds to that feeling. That yet again I don't really fit in.

I think that makes you sensible and thoughtful rather than contrary.  I would certainly hope that the research could lead to a more fine tuned and beneficial approach, although I fear it won't.  

I don't take any of these views as gospel and we're all learning really.  I just believe that autistic advocates are likely to come closer to representing our community than some of these researchers who've been doing very nicely in life on the back of theories that have turned out to be quite damaging.  

 I guess I'm a contrary so so in that I like to make own mind up about such matters, rather than automatically take as gospel  the words of a high profile autistic person. I don't want to be dictated to as to what is or isn't the right way to look at things from an autistic perspective. I can see why the parent(s) of a severely disabled autistic daughter or son might be all for such research, while an autistic person who's doing well in life may be against such research.

How best to accommodate those strands of thinking? Who should advocate for those who, with the best will in the world,will not be able to do so for themselves. Should it be the parents who have daily experience of caring for a severely disabled,autistic son or daughter,or should it be  other autistic people whose lives are very different,but who are diagnostically grouped together?  

I'd personally want to keep the good parts of being an autistic person while eliminating the parts  that are detrimental to my personal well being. I don't think we're at that point yet. We're at the 'use a large hammer to crack open a nut' stage. Research into genetics  could lead to a more fine tuned and beneficial approach  to helping those who are severely  disabled, or those who are not globally impaired but have specific areas  where they struggle.

I actually get that feeling quite a lot but on other threads.  We are such a diverse group, after all, and this space encompasses such a wide range of thought.  I don't think it means that we don't fit and I certainly welcome different views. 

It's simply that, in this case, I believe that people like Kieran Rose and Chloe Farahar put a very strong counterargument against the prevailing approaches dominated by people like Simon Baron-Cohen.  If you feel that his views and research have merit then clearly it's fine to differ.  I just can't see how this piece of research is likely to be helpful to us, irrespective of differing support needs.