ASD Non Diagnosis Help

Wondering if you lovely lot can help me. 

I had an ASD assessment last week and got the outcome that they have decided not to diagnose. 

Below are some of my reasonings for why I feel I may be on the spectrum (be here forever if I put them all):

  • Repetitive behaviours such as watching/listening to the same thing over and over, list making, picking my nails etc
  • Can't cope with routine change
  • Smell food constantly before eating it 
  • Obsessive behaviours 
  • Sensory issues with food/noises
  • Struggle with people/communication
  • Socially awkward 
  • I think very much in black and white 
  • Hate eye contact 
  • Can come across as rude 

Now they have decided on a non diagnosis due to the below reasons (will be something quite sensitive so be warned): 

  • Wasn't repetitive enough in the assessment
  • I have a small amount of friends and a partner 
  • My vocabulary is good 
  • I'm capable of using my imagination 
  • and lastly because of a trauma that happened during my adult life which was a rape/attempted murder (which they were aware of prior to the assessment)
  • I'm aware of other people's feelings (just about) 
  • showed understanding of responsibility
  • ability to offer information (well it was an assessment?)

They themselves have said that I display 

  • Sensory issues
  • Uncomfortable social interactions 
  • Not in touch with my own feelings
  • limited facial expression/enjoyment
  • made repeated references to making lists

I believe I may have High Functioning Autism. 

Now those wouldn't neccessarily be an issue but I feel as though they pretty much ignored all my behaviours/the discussion with a family member - which have existed prior to the trauma and focused their decision from the trauma onwards. I could be wrong but I feel their other reasonings are very outdated and don't adhere to the fact that EVERYONE on the spectrum is different, no person is the same. Nor have they considered the fact I am a 31 adult female and have learned to mask/copy a lot of things since I was a child. 

Anyway, I have the oppertunity for a feedback meeting and was wondering what advice any of you have in doing so. If you think I have good reason to do so and how I should argue my case. I have no issue with the non diagnosis itself per say, it's their reasons behind it that don't sit well with me and make me feel as though they could potentially be wrong in their decision. 

Any help going forward would be appreciated. Thank you. 

Parents
  • Being a Hyperphant (over-imaginative) and having Alexithymia (inability to ID feelings), being Hyper-Sensory and also struggling Socially is a close add up for me that you are quite possibly Autistic-Wired, which is the important bit. One of the strongest markers is if you connect with other Autistics.

    What country are you in? The US is well behind everywhere else in the world it seems.

    One of the big issues with some of these is perspective. Here's an example. One needs pragmatics  when their brain is a bit of a mess and everything spills into each other. This is not Black and White thinking. But a need for precision. The problem is, if I ask a neurotypical for more concise detail, they hear that as needing something black and white and then project that back on me. 

    While it is important to begin to separate Trauma from Autistic-Reasoning, we can become less obsessive, but may always need lists. We can have less anxiety, but will always be impacted severely. Our ability to Mature is not through things like Sublimation, but with practical books on wisdom and rules for life. While everyone may need this to some extent, we might need practical reasoning behind a behaviour to recollect it, like why it makes everyone's life a little better to acknowledge wait staff, or consciously make a gesture of always thanking others. I had to learn these through Life Manuals or by having someone spell them out. 

    Get another diagnostic and in the meantime, work out your strengths and limits, and see what is trauma by what you can find resolve with. Also have a look at: 

    https://aucademy.co.uk 

    https://autistic-village.com 

    https://neuroclastic.com 

  • Thank you. I am in the UK and I was specifically refferred to the particular autism diagnosis team that I was, due to the trauma. The original assessors felt that due to their lack of expertise in those areas, that it would be an unfair diagnosis. Which unfortunately still seems to be the case. 

    I do not get on well with "regular" people. All my close friendships are with those that in their own way are a little bit different (not all are on the spectrum but some are). 

    I have asked the assessors to re-visit my diagnosis based on the facts I have presented to them based on why I think they are wrong. 

    I'm very much at a point where all I am wanting is some clarity regarding my behaviours because my whole life i've been trying to "fix" them rather than learn to live with them in a healthy way, as suggested by yourself due to professional opinions that are clearly mistaken. 

  • It's telling these assessors have never met a well adjusted Autistic individual. They may not understand why the diagnostic criteria has expanded to include mature autistics who've become better with language over time. 

    While it's always good to work on our selves and become the best version of us, it can be advantageous to use these 'road blocks' as a catalyst for learning as well. When I look into classic essays by Orwell or Chesterton, column pieces for newsprint from early 1900's to the 50s, I notice that they take care to make distinctions between motives and how two seemingly similar behaviours or expressions might have entirely different motives. Many of these values still apply to relationships but aren't currently modelled in society while being irrefutably kind. The more I began to understand thesel virtues, or values, the more I could learn to behave in ways I wanted to be seen as. Now, there are always types who simply do not like my autistic innate being, but I would say most break down in communication has always been from someone assuming offence or being selfish and apologising for it several months or a year or even with one person -seven years later. 

    There is a lot to being human and becoming our selves. It's definitely not easy, dx or no. It's OK to have a self-diagnosis as well especially in light of more recent events such as the DNR stamp on ones life. 

    Either way, keep going! 

Reply
  • It's telling these assessors have never met a well adjusted Autistic individual. They may not understand why the diagnostic criteria has expanded to include mature autistics who've become better with language over time. 

    While it's always good to work on our selves and become the best version of us, it can be advantageous to use these 'road blocks' as a catalyst for learning as well. When I look into classic essays by Orwell or Chesterton, column pieces for newsprint from early 1900's to the 50s, I notice that they take care to make distinctions between motives and how two seemingly similar behaviours or expressions might have entirely different motives. Many of these values still apply to relationships but aren't currently modelled in society while being irrefutably kind. The more I began to understand thesel virtues, or values, the more I could learn to behave in ways I wanted to be seen as. Now, there are always types who simply do not like my autistic innate being, but I would say most break down in communication has always been from someone assuming offence or being selfish and apologising for it several months or a year or even with one person -seven years later. 

    There is a lot to being human and becoming our selves. It's definitely not easy, dx or no. It's OK to have a self-diagnosis as well especially in light of more recent events such as the DNR stamp on ones life. 

    Either way, keep going! 

Children
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