Not diagnosed

Hi - I’m a 58 year old female. 
I had my autism assessment on Monday. (waited 18 months for the assessment ) got my verbal results yesterday- no diagnosis 

main reasons - “ I communicated well” and was “very nice” 

I have been a trained nurse for over 40 years in the NHS. I tried to explain that I have learned all my social skills ( conversation and gestures) in that time. 
I am very disappointed and deep down I know this is incorrect 

should I dispute this ? 
has anyone disputed their non diagnosis and been successful?

Parents
  • Hello JulieA,

    I haven't got an answer for you as such. The following are just my thoughts:

    If the following were the 2 main reasons for the outcome then if was me, I would wish to ask the provider:
    How "I communicated well” was seen as a sign of neurotypicality and what does “communicated” and "well" mean in this context.  As can be seen on this website neuro-diverse people are nearly always sound, clear, and accurate communicators although they may not generally look you in the eye whilst communicating.
    Also, I would want to ask whether and how “very nice” fits in to one, or more, of the assessment criteria.
    I know my assessment ran to many pages and the devil was in the detail - even when simply looking at pictures in a book; I did it in a characteristically autistic way but was totally unaware of the fact.
    Just one last thought.
    For 4 years I had been thinking, on and off, about pursuing an assessment or not. So, by the time I went to assessment I felt ready and was conscious that I would need to leave my usual masking self outside the building and be my other private rather vulnerable self that nobody really knows but me. On the day, this was more of an intuitive thing based on the cosiness of the building, the thoughtfulness of the assessor, the lighting, the glass of water, the colour of the room, etc.   
    I guess, on the day, people may be just too good at masking, too nervous, too tired, too worried, etc.  Or even just female, as they mask better or is that diferently, to men.

Reply
  • Hello JulieA,

    I haven't got an answer for you as such. The following are just my thoughts:

    If the following were the 2 main reasons for the outcome then if was me, I would wish to ask the provider:
    How "I communicated well” was seen as a sign of neurotypicality and what does “communicated” and "well" mean in this context.  As can be seen on this website neuro-diverse people are nearly always sound, clear, and accurate communicators although they may not generally look you in the eye whilst communicating.
    Also, I would want to ask whether and how “very nice” fits in to one, or more, of the assessment criteria.
    I know my assessment ran to many pages and the devil was in the detail - even when simply looking at pictures in a book; I did it in a characteristically autistic way but was totally unaware of the fact.
    Just one last thought.
    For 4 years I had been thinking, on and off, about pursuing an assessment or not. So, by the time I went to assessment I felt ready and was conscious that I would need to leave my usual masking self outside the building and be my other private rather vulnerable self that nobody really knows but me. On the day, this was more of an intuitive thing based on the cosiness of the building, the thoughtfulness of the assessor, the lighting, the glass of water, the colour of the room, etc.   
    I guess, on the day, people may be just too good at masking, too nervous, too tired, too worried, etc.  Or even just female, as they mask better or is that diferently, to men.

Children
  • I felt ready and was conscious that I would need to leave my usual masking self outside the building and be my other private rather vulnerable self that nobody really knows but me.

    That's the most painful (for me) thing about approaching a diagnosis (which is still to be done). It's having to lay aside all of one's carefully crafted defences and dredge up the memeories we fend off because they're painful. It's having to drop the masking we've built up for years or decades and have never dropped before. It's having to parade the things that have caused us shame and guilt and that stuff is exhausting to deal with and won't just go back into the box afterwards.

  • Just a quick bit of info on the language around autism. which I hope is helpful:

    "It is common for words related to neurodiversity to be misused. For example, people might say ‘Autistic people are neurodiverse’ when they mean ‘Autistic people are neurodivergent’.

    Examples of accurate phrases include:

    Humans are neurodiverse.
    Autistic people are neurodivergent.
    Autism is a form of neurodivergence."

    NAS - Autism and neurodiversity

    On a related note, in case it's of interest, "allistic" is a term that we can use if and when we want to refer, specifically, to everyone who is not autistic.

    Neurodivergence / neurodivergent is commonly understood to cover people who have lots of different conditions (including autism, ADHD, epilepsy, and OCD, for example). So the kinds of communication differences / struggles that we can experience as autistic people aren't necessarily shared by all other neurodivergent people.

    Sometimes, to get our meaning across, it can be better to just refer to autistic people, if that's what we really mean.