Published on 12, July, 2020
Hey
Sometime after being diagnosed at the end of last year, I've had this nagging doubt in the back of my mind that I've been misdiagnosed. I can't say I'm 100% happy with how the process played out. I went to see a specalist for a diagnosis at Bushey Field's Hospital in Dudley, but my session was no more than half an hour to three quarters of an hour answering some questions. No tests or anything. My mum went on her own sometime after, though she was seen for longer - an hour. It took me 3 years to finally see someone and options around my area (Uttoxeter, Staffordshire) are very limited, so I fear I may have a hard time getting a second opinion if I requested one. :(
Any advice or pointers?
What did the diagnosis actually say? I would have expected something more intensive - it sounds like it was on the NHS, so should involve two clinicians and an ADOS-2 test lasting about an hour. You could check with your GP that this is the official diagnostic pathway, Maybe they can suggest a route for ADOS-2.
Although autism can't be diagnosed by questionnaire, can I suggest two unofficial online tests that might sway your decision one way or the other? Firstly, 'RDOS' - http://www.rdos.net/eng/Aspie-quiz.php. Secondly, there are tests for alexithymia, a non-clinical condition that is more common than autism: http://www.alexithymia.us/test-alex.html I think most autistic people are alexithymic, so if that comes back negative, that would be an additional reason to doubt the diagnosis.
Do you think you could have some difference or issue that isn't autism, such as ADHD?
It said I have autism or that I’m on the autism spectrum. It was on the NHS and two clinicians, but no ADOS-2 tests.
i did the two tests. For the first one I scored 116 for neuro diverse and 117 for neurotypical, so I’m half and half. The second one I scored 72 and it was negative. It makes me question my results even more... :-/ A friend who’s on the spectrum keeps trying to reassure me that I should be happy with my results and that everyone’s different on the spectrum, but I can’t stop this nagging doubt.
And no, I don’t think ADHD applies to me.
Thanks for the answer. Actually RDOS tells me I have both neurotypical and 'aspie' traits, while my ADOS-2 came back positive (score 11+2, and I get around 140 for alexithymia). It took several months since diagnosis and wasn't until I heard one or two people talk of their experiences, which defied common sense but I recognised strongly, that I've been comfortable identifying as autistic, at least in private. I certainly don't identify my self-image with some of the official criteria (I like variety, I'm imaginative), but they seem to be based on psychiatric hypotheses about why people have trouble communicating or getting on socially. The actual range of differences is wider than a 'syndrome'.
I suppose it's possible that the clinicians made conclusions about your social interaction just from the interview, or based in on what your mum said.
I don't think it feels good to lack a definitive answer, but I suppose this gives you a choice, whether to reject the diagnosis, or whether it's useful to you.
Yes, the communication differences are usually not so much about the 'content' of communication. They're more supposed to be about the form, manner or social context, which I think is sometimes called 'metalinguistics'. I think I have differences in initiating or changing conversation, although most people say I'm very articulate.
DustyShinigami said:not always knowing what to say, struggling to form and maintain relationships of any kind, hating small talk, preferring to do things on my own, having routines and getting depressed if they sometimes get messed up, having obsessive interests right from childhood, feeling different, isolated, alone etc. I think I have a touch of Synesthesia as well and have for as long as I can remember. My final assessment mentioned that my voice sounds 'flat' when I speak, which I never noticed
I think I probably have quite a 'flat' voice if I ever hear it played back. Such flat 'prosody' tends to sound a bit depressed. I've also been told in assessment that I don't make frequent emotional or emphatic gestures. I don't know exactly how important these are to social functioning, but might make me appear detached or standoffish.
BTW despite what I said, I notice the NICE guidelines only recommend considering a tool like ADOS-2, although I think it's pretty standard where I am: www.nice.org.uk/.../1-Guidance
I know the specialist said during my assessment that it was more down to *how* the questions were answered rather than the answers themselves. I don't fully reject the diagnosis, but as I say, I do question the process. I would like a second opinion, but getting a diagnosis at all took 3 years. There's practically nothing around here.