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?
I did both of those tests & came out as both 'ND & NT' in the first one & definitively non-alexithymic in the second. Also, although I didn't save the graph from the first test, it looked very odd. I'm not surprised though, I show up as very strongly autistic in half of the categories, & almost not at all in the rest.
Even though I was only diagnosed last year in my mid-fifties, I don't think my diagnosis is wrong. The assessment took several sessions because I don't display the more visible traits that people associate with ASD. Even though I have spent most of my life in denial, I have always suspected I was on the spectrum. It's almost ironic that the reason I have always felt like an outsider is that I quite literally don't fit in anywhere.
With regard to alexithymia & the ability to read body language or other non-verbal cues, I see it as pattern matching. A fairly mechanical voice in my head breaks down each fragment of behaviour into components, then extrapolates the most probable meaning & suggests potential responses. Sadly it isn't 100% reliable, but it does seem to have improved over time.
I have always liked the quote "If you have met one person with Autism, then you have met one person with Autism!"
That last quote - my friend says that too. But I do agree that there are certain traits I share/recognise and makes perfect sense for me to be on the spectrum. But there are plenty I don't share. I'm fully in touch and can read my emotions; I'm VERY sensitive, which can sometimes lead to meltdowns. The ones I do have are social struggles/anxiety and 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.