I joined this forum yesterday, and this is the first thread I've started, so it's a kind of introduction.
I'd be interested to hear from autistic adults who were diagnosed using ADOS (Module 4), particularly ADOS-2 which has been used since about 2013. The reason is that I think my autism is very subtle, although it looks like ADOS can detect it. I want to identify my differences more precisely and compare scores. If you've not had an ADOS, this may contain spoilers and allow you to influence the result a bit.
I've been reading that 90% of autistic people have sensory issues, and I seem to not be significantly hypersensitive, may be hyposensitive, or may just not know. I believe I have executive function problems and think that probably the most fundamental difference is not knowing how I feel ('alexithymia' as it's called). So I've been wondering if a more helpful label might be AD(H)D. Am I slightly autistic, very autistic, or is the diagnosis valid at all? Apparently it's normal to have doubts about the diagnosis for a while after. I am realising I've been masking for 35+ years, and a lot of my past history is re-evaluated if I think my social problems are innate rather than something I could learn my way out of.
Anyway, I received a diagnosis of ASC, specifically Asperger Syndrome, two years ago from a psychiatrist. I still have the letter, which describes my history reasonably accurately including long periods of depression and not much success at relationships or work. That gave me a score of 11 (for communication + social interaction, nothing on special interests, and 2 for imagination which isn't included). The cutoff for any autism spectrum condition is 7 and for 'Autistic Disorder' 10. The letter referred to a history of isolating myself (with or without good reason), but also the communication element was based on the interview, my speaking quietly and lacking reciprocal social interaction or asking questions. Well, it was a diagnostic appointment, which I'd approached with an open mind, not a social occasion, so it seems reasonable just to co-operate and react to the questions.
More recently, I did the ADOS-2 again with some trainees and tried to pass as neurotypical, by being chatty and asking appropriate personal questions, and making up any rubbish story. I was still on the threshold though, this time because of lack of emotional and emphatic gestures, and because I hadn't prepared for the questions about how emotions feel (the alexithymia is a bit of myself I can't easily bring out into the open, although I'd always assumed that was simple shame and feelings of inadequacy; it's not that I'm not sometimes overpowered by emotion, but my own is too much to be let out). I suspect NTs may not be able to emulate autism well, without training, apart from by restricting their use of language. Anyway, the diagnosis stands, but I still sometimes feel a 'fraud' among other autistic people because my differences/impairments are unclear - those who know me well can't describe it either.
So that's an 11. Would anyone else care to share their ADOS results (including which version, because they score differently)? Did you learn anything interesting from your diagnosis?
Interesting. It's helpful to read your experience! I'm curious why you did ADOS a second time?
I volunteered as a known autistic person to help in the training of new assessors. There were two students, two qualified assessors and a trainer in the room, plus me. I don't think I was the most nervous. But my conclusion is that you can influence the result if you know what they're looking for.
I'm still kind of interested in where 11+2 would fit on the continuum of symptomatology. Middling, I suspect.