BBC Piece

I have diverticular disease/chronic diverticulitis, and I concur. 

I have Crohn's disease, it feels much the same as a semi-colon

indeed, the spam filter is a fickle beast on this site.

I made a quite lengthy reply earlier, but when I edited it and changed a comma into a semi-colon it was flagged as spam or abusive. Hmmm?

Same here. Seemed to shake my sense of security totally out of alignment. Don't even feel like I fit in when I'm alone anymore. Quite the trip

Sorry to hear that.  MH services in general on the NHS are an absolute joke. I know for me, when I finally confirmed (for myself) that I am autistic, it led me down quite the rabbit-hole and shattered any grasp I had on social interaction.  Still trying to piece together a way to usefully socially interact.

Even with a diagnosis, I'm sorry to say, you are still left high and dry. Since I got diagnosed in 2020 nobody has checked back to see if I'm ok or offered any help. Not a single person

It's a really bad state of affairs. The rollercoaster you are left to deal with is a long road with many questions

Thank f for this forum tbh

I kinda agree on the lack of support - having to wait 2 to 3 years for a diagnosis on the NHS means that there will be many who self-diagnose while on the wait list (like me) and who then have to go through the heartache and confusion alone.

Speaking as a former molecular biology/cell biology researcher, albeit on pathogen genetics not human genetics, I can state with some authority that, relative to my qualifications and level of specialist expertise, I was not notably well paid. I cannot imagine that anyone goes into a career in biological research for the money. I entered my research field because it fascinated me and, in working on a disease that affects some of the poorest people in the world, I would be doing something socially useful.

Work like the Spectrum 10K study will be done, because it can be done; it would be better for it to be done in liberal democracies than in some totalitarian state, like China, where ethics are non-existent. Personally, I think that opposition could be effectively diffused by researchers announcing that one of the main goals of their research was to find genetic variants linked to autism that are also associated with beneficial traits useful to society. We already have limited knowledge that these exist.

Totally agree. Interesting to see the establishment struggle with simple concepts to the rest of us. The old redtape or established ways of working that stop logical thinking perhaps. 

Eh hmmm it's better than the demonising shock mining junk they used to come out with 5 years ago. I really don't see why they need to do the "opposing views for "balance"" bit though. Especially saying about young NT researchers being put off doing autism research when they get called out it's like well boo hoo, you have to be pretty lazy as a researcher when being sensitive to the autistic community is as simple as consulting actually autistic people. Literallly #actuallyautistic and #nothingaboutuswithoutus have existed for years it's not like we are hiding and unwilling to proof read their stuff. To "not know" there are autistic people who can be asked to review your autism research paper before you publish it really puts the ignore in wilful ignorance.
I find it difficult to feel sorry for the NTs doing autistic research, because they do research so of all people they should know how what they say can harm more than help, and diddums they have a well paid job when tons of us autistic people are unemployed and on the poverty line. I'm really tired of NT people sitting in their place of privilege and then whining when people refuse to centre their feelings over the lived realities of autistic people.

JT said:

I know plenty of people likely on the spectrum, mostly creatives, that work in TV. They should ask us to make programs for them!

Exactly. And precisely why #nothingaboutuswithoutus got started.