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 I could be wrong but I feel their other reasonings are very outdated and don't adhere to the fact that EVERYONE on the spectrum is different, no person is the same.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

  • I had an initial screening by my local autism diagnostic team in Jul 2019, where they told me I was anxious and wouldn't offer me an assessment. You are entitled to a 2nd opinion. My GP obtained out of county funding through my local CCG and I was referred to the Lorna Wing Centre. On 25th January this year (delayed by the pandemic) I travelled to Chigwell in Essex, had my assessment, and got my diagnosis. It does help if you have a supportive GP, as they should help you to be referred elsewhere, for the 2nd opinion which you are entitled to.

    My local diagnostic team has since made many changes to their staff team, as I heard they were not doing the assessments properly, so clearly they do make mistakes, but were not willing to help me when I complained. Luckily I have a supportive GP who helped me to get referred elsewhere.

Reply

  • I had an initial screening by my local autism diagnostic team in Jul 2019, where they told me I was anxious and wouldn't offer me an assessment. You are entitled to a 2nd opinion. My GP obtained out of county funding through my local CCG and I was referred to the Lorna Wing Centre. On 25th January this year (delayed by the pandemic) I travelled to Chigwell in Essex, had my assessment, and got my diagnosis. It does help if you have a supportive GP, as they should help you to be referred elsewhere, for the 2nd opinion which you are entitled to.

    My local diagnostic team has since made many changes to their staff team, as I heard they were not doing the assessments properly, so clearly they do make mistakes, but were not willing to help me when I complained. Luckily I have a supportive GP who helped me to get referred elsewhere.

Children
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