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ASD Non Diagnosis Help

Helleh

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 I could be wrong but I feel their other reasonings are very outdated and don't adhere to the fact that EVERYONE on the spectrum is different, no person is the same.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. 

  • in reply to Helleh

    Did you have to do some tasks? I think its common to do tasks as well as question and answers about your development.

  • Similarly to Shardovan, I'm not qualified to advise on the diagnosis,

    However, I think there are a few bits of information that you may benefit to include for the purpose of your post. These may be silly questions but as it wasn't disclosed, what process did you take to go through this diagnosis? Was it a GP referral? NHS waiting list? Or did you search for a private diagnosis yourself? If so did you ensure it was a reputable organisation and practitioner?

    Have the points you have mentioned also been prevalent during childhood/early life as well? Or did they appear in adulthood? They may be thinking along the lines of PTSD perhaps? (Though again I'm not an expert on these things, and have very little knowledge on PTSD, I am just speculating) 

    As the others have said though, im sure you can always speak with a different practitioner if you aren't comfortable with the decision.

    Best of luck,

    Sam 

  • in reply to Shardovan

    Thank you, yes it seems I wasn't autistic enough on the day. 

    As you say, my gut says their decision is incorrect and the reasons given are ridiculous. 

  • I'm not sure I'm qualified to advise as I'm only recently diagnosed myself, but it sounds like they focussed a bit narrowly given how many boxes you appear to tick. If it's sitting wrong with you, your intuition is very likely correct - and many people do self-diagnose it seems, maybe wary of exactly that experience - not being autistic 'enough' on the specific day you need your spiky profile to be at its spikiest! I'm sorry that you're going through this.

    Out of curiosity, does a decision 'not to diagnose' mean something more amiguous that 'we diagnose that you don't have...'? I feel they should also be offering other neurodiverse alternatives/traits to help you know yourself better even if it's not autism. Which it sounds like it actually is! Very confusing for you, and that's not fair.