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 I could be wrong but I feel their other reasonings are very outdated and don't adhere to the fact that EVERYONE on the spectrum is different, no person is the same.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

  • 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. 

Reply Children
  • I just feel like they pretty much went in there with a decision made on factors prior to assessment instead of actually listening to the evidence being given to them. 

    My assessment was horrid. First hour and a half was emotion/feeling/friendship related with puzzles etc and the last hour and a half was a full on interrogation (what it felt like) regarding my life story. I felt umcomfortable the whole way through and even my relative during interview declined to talk about the trauma as he could tell they were fixated on that. 

    So no, it definitely wasn't a very fair assessment. 

  • Yes. The things you said in your OP with the exception of trauma I can relate to. Who says autistic people cannot have friends or a partner. Don't they know how much effort is involved? Also that one's friends could also be neuro divergent? 

    Sometimes, and I think this happened in the assessment, i got there through power of deduction, masking, and lots of cognitive working things out. These things are internal and they don't show outwardly as behaviour.

    Not being in touch with your own feelings could be to do with alexithymia which is common in autistic people. 

    Anyway I'm not a specialist but I think it's important to feel like you've had a fair trial so to speak.

  • I did some tasks yes and they found themselves that I latched onto a spinning fidget toy out of everything else 

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