Terrified of Diagnosis Negative Result

Hi all,

I finally at 33 decided after some of my own research to ask my GP for an assessment referral as my family/close people have for a while been telling me I'm "on the spectrum" and pointing out things I've always done. Things had been stressing me out masking and negatively stimming (I think that's the right term?).

My GP luckily agreed some of my list of noticed traits/habits were typical autistic traits and some could have been obsessive behaviours so referred me.

The more I researched about autism the more I recognised things in myself and the more I felt I identify with autism and want to find support.

My worry now is that:

A) I've read a lot about long waiting lists and I stress and get anxious a lot waiting for important things.

B) I will have a negative assessment and be shot back down to struggling with my "quirks".

I'm partially starting to regret the referral now as I've felt extra self conscious after researching and asking those close to me to discuss what issues they've noticed about me but I feel a positive diagnosis would really help me.

Has anybody got any advice here as I'm feeling super stuck and stressed.

Parents
  • I've been reading that you should bring someone who's known you since childhood to the assessment but I can't decide who that should be.

    My parents are VERY different people and divorced. One of them is very level headed and tends to play things down and the other tends to be over the top and critical. Part of me feels the one who is more over the top and critical is more likely to put across issues she can remember about me. On the other hand, maybe the more level headed one could be more focused but I fear they might want to play things down too much and not be too helpful for the assessment.

    I don't really have anybody else I've known since childhood as I had trouble keeping friends though I would prefer not to have to drag my parents in and bring up too much of the past as I feel I had a bit of an upsetting childhood with them at times.

    Really I just want to completely bury my head in the sand until some sort of positive outcome but that hasn't gotten me anywhere in the past. Maybe that's why bringing someone else would help.

    My wife has only known me for nearly 5 years but of course spends the most time around me and notices the most but is that kind of reference wasted as it doesn't justify the "lifelong condition" criteria?

    I just want everything to be final and get on with sorting things out... patience is not my strength with these kinds of things.

  • My referral was put in on the22nd August and I am currently in the hospital car park waiting to go in for the assessment. So that’s just under 3 months wait through the NHS.

    Its been challenging getting through those 3 months but it has gone quicker than I thought 

    My 80 year old mother is attending the last two hours to fill then in on my early years

    The staff must be pretty used to seeing autistic people and will see though any masking pretty easily so there’s no need to worry about them not picking up the signs

  • I think was lucky having to only wait 3 months

    I think waiting lists vary between counties. My county is Wiltshire and I was referred to Wiltshire Autism Diagnostic Services (WADS) they have a Facebook page. There is probably something similar in your county

  • Hey!

    I was also diagnosed through WADS a few months ago and was amazed at how quick the whole process was!

  • He's  in the States so there's no way he'll physically make the appointment.

  • I wouldn't be too concerned about what your father thought about your early years. My mother told the assessor that I had a perfect childhood during my primary school years - parents tend to get very defensive when talking about the upbringing of their children but she did admit that  I was extremely shy and introverted. She also admitted that she was told during a primary school parents evening that the teacher thought I seemed to be unhappy and not mixing. From what I remember about my primary school years, I recon I was pretty normal, I was happy and had lots of friends. I didn't feel different until I started going to secondary school (age 11).

    If your father cant make the appointment they can arrange to contact him by phone or mail

  • I'm in Wiltshire too, From getting the appointment letter to the initial appointment date in February it will have been just over 15 weeks.Like the OP I'm worried about a negative assessment and a failure to get to  the bottom of things. I'm absolutely certain I'm not neuroptypical but less certain about the ASD bit.

    What isn't helping is that info re the very early years is reliant on an 88 year old father who has recently said he sees no signs that would warrant such a diagnosis, and has previously admitted  he remembers not that much of my early years.

    I am thinking due to being late onset I would be more likely to be atypical (atypical autism) . By 8 the way I am had definitely developed. I had a poster on Reddit tell me that 8 was about the age you first notice social differences in someone with Asperger's .

Reply
  • I'm in Wiltshire too, From getting the appointment letter to the initial appointment date in February it will have been just over 15 weeks.Like the OP I'm worried about a negative assessment and a failure to get to  the bottom of things. I'm absolutely certain I'm not neuroptypical but less certain about the ASD bit.

    What isn't helping is that info re the very early years is reliant on an 88 year old father who has recently said he sees no signs that would warrant such a diagnosis, and has previously admitted  he remembers not that much of my early years.

    I am thinking due to being late onset I would be more likely to be atypical (atypical autism) . By 8 the way I am had definitely developed. I had a poster on Reddit tell me that 8 was about the age you first notice social differences in someone with Asperger's .

Children
  • He's  in the States so there's no way he'll physically make the appointment.

  • I wouldn't be too concerned about what your father thought about your early years. My mother told the assessor that I had a perfect childhood during my primary school years - parents tend to get very defensive when talking about the upbringing of their children but she did admit that  I was extremely shy and introverted. She also admitted that she was told during a primary school parents evening that the teacher thought I seemed to be unhappy and not mixing. From what I remember about my primary school years, I recon I was pretty normal, I was happy and had lots of friends. I didn't feel different until I started going to secondary school (age 11).

    If your father cant make the appointment they can arrange to contact him by phone or mail