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 I could be wrong but I feel their other reasonings are very outdated and don't adhere to the fact that EVERYONE on the spectrum is different, no person is the same.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

Parents
  • Helleh said:
    • 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?)

    Oh boy, sounds like their training is out of date...yeah, I have friends, been married...social difference is the criteria, not being friendless. Good vocab; many of us have excellent vocab, even early speech development, but yet use mostly functional language or have echolalia differences in speech development, Hell yes we have imaginations albeit we use them differently, I'm aware of other people's feelings - when they tell me!, Bloody hell! Autism isn't synonymous with irresponsible behaviour, some of us are so rigidly duty bound.. yes, I offer information too. Not always understood, but I offer it. (Bless you my love, having a frustrated moment for you there).

    K, you need to be reassessed. Either you are not autistic, but the above listed aren't in themselves reason to dismiss the possibility that you are. Or you are close to the spectrum ( high level of autistic traits - the needs of those who are almost but not quite meeting the criteria are in my view overlooked). Or you are a full blown Autie/Aspie, who's had a crap diagnosis.

    Who did this for you? Private or NHS?

Reply
  • Helleh said:
    • 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?)

    Oh boy, sounds like their training is out of date...yeah, I have friends, been married...social difference is the criteria, not being friendless. Good vocab; many of us have excellent vocab, even early speech development, but yet use mostly functional language or have echolalia differences in speech development, Hell yes we have imaginations albeit we use them differently, I'm aware of other people's feelings - when they tell me!, Bloody hell! Autism isn't synonymous with irresponsible behaviour, some of us are so rigidly duty bound.. yes, I offer information too. Not always understood, but I offer it. (Bless you my love, having a frustrated moment for you there).

    K, you need to be reassessed. Either you are not autistic, but the above listed aren't in themselves reason to dismiss the possibility that you are. Or you are close to the spectrum ( high level of autistic traits - the needs of those who are almost but not quite meeting the criteria are in my view overlooked). Or you are a full blown Autie/Aspie, who's had a crap diagnosis.

    Who did this for you? Private or NHS?

Children
  • in reply to Dawn

    My uncle has always thought I was autistic, when I was a kid it wasn't really a thing so obviously was never picked up on. I made some autistic friends and they themselves picked up on traits that I had always been told were strange by my peers. 

    My daughter then started showing signs so I decided to get us both assessed. My referral was within the NHS anf likewise my daughter who got diagnosed. 

    I was placed with a different group of assessors which was the original referrals sister site who are experienced in trauma and are meant to be able go divide up all the information fairly to focus on the traits etc which hasn't happened. 

    There were two woman the lead clinician in the first half who obsevered me do puzzles etc eith the othrt female. The lead clinician then did the last hour and a half which was pure talking. I ended up masking and talking to the point of trying to get out of there because quite frankly, she was very shut off and uncomfortable to be around. They kept pressing about my trauma from the moment I walked in. 

    My medical examination after the trauma, was quite honestly less invasive. I have written a letter stating their lack of consideration to facts such as masking and their countless contradictions. If they still refuse to re visit I shall seek a second opinion