I received a negative ASD diagnosis this week and it’s left me feeling very upset and confused. It’s not just that I disagree with the diagnosis (as do my family and long term partner) but the way I was treated has left me feeling very distressed. I spoke with a GP and was referred for assessment in Jan 2020. This was after I started reading numerous articles and watching videos by women with a late diagnosis - it was like they were all describing my life and experiences back to me, for the first time it all clicked.
The first assessment I had was with a doctor who I later found out is studying to be a psychiatrist, so not yet qualified. We were both wearing masks and sitting two metres apart, with the doctor looking at her screen and typing loudly for 95% of the 2 hour session. She often misunderstood what I said and I’d have to try and explain again, and when she went over previous comments I realised she had recorded details incorrectly - as if she was applying her own subjective personal experience to my life rather than trying to understand me. The interview marched on at pace and because I often lose access to information recall when I’m anxious, I found it difficult to answer the questions in the timeframe I was expected to (I mentioned this at the time) - I had provided a detailed list of difficulties I have to my GP which this doctor had a copy of and I assumed would be taken into account. I was often in tears when I was talking about very difficult times in my life (including when my mother died from a heart attack) and so I asked if I could have a tissue but was told there weren’t any in the room. I then asked if she could please get me one from somewhere. The doctor reluctantly got up from her desk and stood by the door and said she could get one from the loo if I really needed one - I had tears streaming down my face and my nose was running - she eventually left and came back with some paper towels which she handed to me without a word. I felt totally vulnerable and humiliated and wish I had just walked out but I stayed for the rest of the assessment because I thought it was my only chance to get a diagnosis. When I got home I couldn’t do anything but lie on the sofa under a blanket crying for the rest of the afternoon. I still feel upset thinking about that assessment now.
The next session was only 45mins and once again with masks and socially distanced. At least this time the assessor (an occupational therapist) was sitting looking at me and there was also a student observing (I wasn’t given any notice of this). I was asked to do what seems to be the standard childish tests - place rubber blocks on a shape printed on paper, describe what’s happening in a picture book about flying frogs, talk about a holiday, act out brushing my teeth, and creating a story from objects from a bag… All of which I did but once again I struggled with recall because I felt anxious.
The report I received this week is such a factually inaccurate record of my family and myself it would be laughable if this experience hadn’t been so distressing. There are so many inaccuracies and misquotes that I would need to go through the document line by line to point them all out. It reads as if the report was written weeks, if not months, after my assessment when there was no longer any recollection of the session and only sparse notes to base it on. Even my age, date of birth, and date of assessment are incorrect. Apparently because I sat in my chair for the entire assessment, showed no signs of echolalia or repetitive movement, but did make eye contact, display signs of empathy, creativity, and humour (I ‘laughed on at least one occasion’) I do not meet the criteria for ASD. However, the report does describe (what are to me) so many clear behavioural indicators of someone with ASD. I’m a 45 year old woman and an expert masker, I can’t stop it - it just switches on as soon as I’m with people and I start going through my scripts and memorised behaviours. I have even changed my laugh and used decades of meditation and yoga to train myself to sit still and not fidget in front of people. I can look people in the eye because I make myself do it, and every time I’m guessing how long to do it for because I don't know what each individual person expects. There was no attempt to even try to assess me beyond the most obvious and physical traits of ASD. There appears to be no awareness at all of how ASD can manifest in women. They also didn’t take into account the only person I have to provide details of my childhood is my sister who is 6 years older than me - she was a child herself so her recollection will reflect that. They didn’t ask for any information from my partner of 12 years.
Sorry this has become very long! I haven’t been able to sleep for the last few nights and I’m posting here because I’m hoping someone has some advice as to what I do next. I don’t want that report attached to my medical file because it’s so bizarre and inaccurate. My mental health has deteriorated over the last few years to the extent I’m struggling to work and pay the bills - they did conclude that I’m suffering from anxiety, depression, and OCD and should seek help (ie. add myself to another waiting list). I had hoped a diagnosis would help me get the support I need with social and communication issues and to find employment that I can cope with but I've been left feeling vulnerable, humiliated, and dismissed.
