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 I could be wrong but I feel their other reasonings are very outdated and don't adhere to the fact that EVERYONE on the spectrum is different, no person is the same.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

  • Good god. Why is this still happening? Females aren’t that hard to diagnose! The criteria they use is outdated and geared towards young males. Clearly you need a second opinion. 

    You are quite right in your thoughts regarding the reasons they gave. I have said on here multiple times that my daughter didn’t get a diagnosis. They said things like she couldn’t have ASD as her interests were mainstream, she was attractive, she has an imagination, she had friends, she shrugged her shoulders, she nodded her head, she appeared to be embarrassed  on one occasion, she was amiable, she articulated herself, she knew when I was upset, to name but a few. Utter rubbish. She knows when I’m upset  because I go mute. Not because she can tell from my facial expression….

    We tried to get a second opinion,  it were told they’d use the same criteria and come to the same conclusion, so we went private 2 years later.

  • in reply to Catlover

    Exactly that, I left feeling worse about myself than I did when I went in there. Like everything I had said had been completely invalidated and that my trauma was held against me more so but by "professionals". 

    Did you find going private gave your daughter the correct diagnosis? As I am considering it. 

Reply
  • in reply to Catlover

    Exactly that, I left feeling worse about myself than I did when I went in there. Like everything I had said had been completely invalidated and that my trauma was held against me more so but by "professionals". 

    Did you find going private gave your daughter the correct diagnosis? As I am considering it. 

Children
  • in reply to Helleh
    Helleh said:
    it's just some understanding of who I am and i'm petrified I now may never get that due to some ridiculous reasons. 

    I would give yourself plenty of time to make a decision on what to do next with this.

    You already 'know' yourself in that you 'know' you have the difficulties you speak of, I do know how incredibly intolerable it can be for a person with an ASD to not know the 'why's' of pretty much anything, but how much of a difference will a 'label' really make to you? 

    It seems there are just as many people who say they have regretted getting an official diagnosis as those who say it finally gave them an answer....'labels' can be extremely limiting and problematic - I also acknowledge 'liberating' for some - but as a species - or as a 'society' humans are not as yet anywhere near to accepting differences without prejudice.

    I am only able to relate to another persons experience if I have experienced the exact same so to speak, other than that, my mind would be 'blank', so I do understand the 'what's wrong with me' frustrations, I have been that way my whole life right up until the diagnosis of Asperger's at the age of 49 (female sexed).

    3 years 4 months and 4 days later I am still trying to 'understand' myself, I have an 'explanation' which is not the same as having an understanding and knowing yourself. ASD is an extremely complex condition with many paradoxes - the 'spikey profile' often referred to in people -  I have found it ironic that my own ASD brain thought processes can be confusing to itself in trying to understand that!

    I am one of the diagnosed who had no idea they had an ASD and didn't seek out an ASD diagnosis, just that I knew I was different from those around me for as long as I can remember- if you are interested in learning more you can read my other posts. I received an NHS diagnosis. 

    The label for me has brought it's own problems and often I think I would have preferred to have lived with the 'mixed anxiety and depression' label in that I have never experienced so much prejudice and discrimination as I do now from both organisations and people.

    It's an instant license for the finger to be pointed at the person who has the ASD in any difficult/conflicting communications/interactions with those around them who are non ASD, even if it is clearly them who have the problem - so full circle back to "but as a species we are not as yet anywhere near to accepting differences without prejudice".

    In seeking out help for my difficulties, what I was looking for was a way to 'fix' what was wrong with me, so I could accomplish things in life that I wanted to which were not that different to those around me who seemed to just know how to make happen effortlessly, a job, career, home, friends, yet when I tried to do the same it just didn't happen and if somehow I did get things going it wasn't long before it would end in disaster! 

    I got my answer shortly followed by 'so this can't be fixed'...and that too is still unfolding.

  • in reply to Catlover

    It's terrible because you end up over thinking and questioning everything you believe about yourself. 

    I'm not in a position to go privately so it's very much a loss and a where do I go from here scenario. It's not the paper aspect that I want, it's just some understanding of who I am and i'm petrified I now may never get that due to some ridiculous reasons. 

  • in reply to Helleh

    They tried to blame all my daughters other issues on the fact that her father and I had split up, because that had happened a few months before I went to the GP for advice on her problems.

    We we’re lucky. Our psychologist was very knowledgeable. Autism is a special interest of his, and we knew he had diagnosed females young and old.

    He made use of her NHS assessment report, and challenged it in detail. The assessment process was very thorough. She was diagnosed with ADHD inattentive type, ASD and Dyspraxia. 
    a far cry from ‘some anxiety from being a student in a big school’ and ‘some sensory problems’.