Uncertain Newbie

Hi! My name is Charlie and over the Christmas period I was assessed for Autism after a few months of pushing.

My family would say I've been searching for a label for a long time. I'm not content to accept that I feel different without understanding why that is. The process started in March/April 2018, admittedly I was still ill with glandular fever, but I watched the Are You Autistic? documentary on catch up and found myself crying my eyes out in the middle of the night. In particular, there was a woman diagnosed with Aspergers who I related strongly to, and I had a strong reaction to the section about women and social masking. I had been doing some research on and off after some of my behaviours led to tension and I wanted to know if anyone else experienced them. This usually consisted of articles, blog posts, official websites, and Ted talks and other videos. A lot of it just rang true I guess. When I took the AQ test I consistently came up with scores from around 31-33. So I went to my GP.

A few months of struggles and chasing later and in November I was in my first meeting regarding the assessment. They even wanted me back for a second session.

In early February this year I got the results of that assessment. I was told I was not on the spectrum according to their criteria. In the long report they gave me they mentioned that some of my traits could be related to Social Anxiety Disorder instead. But along with that 'no' they still told me I had many traits. I simply didn't have quite enough to warrant an official diagnosis. My family are very willing to accept this and any decision I make regarding it but personally I am very conflicted. I am aware of the danger of seeking second opinions until I hear what I want to hear, but to me the fact that I can still have many traits and react so strongly feels odd. It seems like I've gone from just over the bar to just under it. Part of me knows that's possible but part of me is also sceptical about it.

I feel it worth noting somewhere in here that some time after my first assessment I met someone who is now my partner. He was surprised to hear my concerns but also understood the traits I described and the concept of social masking. But he also did say I didn't seem like others he's met who are on the spectrum. (Another note, a friend of mine when I was about 12 had a younger brother with Aspergers. The friendship broke down in part because I would get along so much better with him than with her, and this is extremely unusual for me. I also have a younger cousin about 6 who is also currently being assessed. I got on with her extremely well, better than the cousins on the other side. Not diagnostic I know, but very interesting I feel.)

I was wondering if anyone had any comments or advice regarding this as I don't have many people to go to. The few people that I have spoken to outside of my family also think its a strange thing to be told and would encourage me to get a second opinion. One even suggested that if I do relate strongly then maybe I should take my own gut feeling over 'not quite making the grade'.

Parents
  • I feel like maybe I should clarify; I am currently 23 and female.

    I did initially go to college at 16 but I had a breakdown a few weeks in. I'd been forced onto a course I wasn't interested in and eventually I was crying my eyes out in the town centre because I knew I wouldn't be able to do it. I've suffered with depression since before then but it wasn't picked up on.

  •  mental ill health such as depression is another key indicator of undiagnosed autism. I regularly experienced depression before my diagnosis as I found the world to be challenging, plus I always knew I was different but didn't know why. Autistic people can struggle to regulate their emotions, as well as experiencing extreme emotions. This could explain why you ended up in town haing a 'meltdown'

Reply
  •  mental ill health such as depression is another key indicator of undiagnosed autism. I regularly experienced depression before my diagnosis as I found the world to be challenging, plus I always knew I was different but didn't know why. Autistic people can struggle to regulate their emotions, as well as experiencing extreme emotions. This could explain why you ended up in town haing a 'meltdown'

Children
  • That was another factor that made me look, particularly since it probably started when I was around 10. The assessors put that down to a cross country move and basically said that triggered social anxiety and I’ve never recovered. I’m not too sure, I always felt like I understood my friends in the north but when I moved south I no longer did. 

    I also wondered if the worsening symptoms since leaving school were down to a lack of social prompts. If I no longer had anyone to watch and copy, those social ‘skills’ just crumbled.