Misdiagnosed?

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?

  • 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.

    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

  • 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.

  • 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.

  • 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!"

  • This bears no resemblance to my experience and it really interests me.I went to my GP about some medical problem totally unrelated to Autism.He asked if i would see someone so i did ... think she was a social worker .... she asked if i had ever had a diagnosis of Aspergers and i said no.I was then referred to Outlook SouthWest and had to ''see'' a specialist over many months who contacted my parents, my school my place of work.I went through a long protracted series of tests and meetings and was formally diagnosed after a second opinion as having Aspergers Syndrome ... i then had to attend further meetings with a specialist to help me with the diagnosis and had to see a clinical psychologist for almost two years after that.It was a LONG process ........ when i went to a day center i met a woman there who said she watched a TV programme about autism then she said she went to her GP and told her she had Autism , the doctor apparently said .. ok then and she was ''diagnosed'' as having Autism.It seems that people are having many varied diagnostic experiences..... i have been in and out of care most of my life and in many mental hospitals pre diagnosis and over the years have met many people who have been diagnosed as Aspergers but who clearly are not ....... a ''DIAGNOSIS'' is just someones opinion of you and as such is relatively meaningless .... i KNEW long before i was diagnosed that i was not ....'' NORMAL''  and the diagnosis has helped me immensely.I also went through a denial phase and resented someone labelling me but now i am ok about it..... all that matters at the end of the day is you are true to yourself, be nice to people and forgive them...........

  • 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.

  • 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.

  • 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?