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
  • You are obviously at an age where as you are "growing up into being a responsible adult" for want of better words, that in itself can be frightening, because we are becoming living in a world of diverging inequalities, like myself 65 years ago, leaving school at 16 and worked for several years and then doing compulsory military service. I too embarked on further education at the same age as yourself.  So with luck you can look forward to having Problems of life to tackle and trying to overcoming them for the next 65 years , I know I will be so fortunate. 

    You describe yourself as getting along with other people, and of friendships. You write of your partner who apparently perceives you as normal.

    You even seem to be able to understand why another person is saddened. 

    You, in my view as the parent of a 36 yr old severely autistic son, are not autistic, although I fully understand you are confused, and your searches to quite an in depth level, such as Ted Talks. for their opinion, whereas at my age having experience life I have my opinion, and if I come across something like the Comment" Ted Talks" I simply google it, remember what it was about and move on.

    You have your studies to do to A level forget about all the other problems having a badge saying you are autistic will not affect the work you have to do.

    However if you have a certified medical report, I suggest as a one time Student leader that you seek out, your college Student Union, and their welfare officer contacts , because their is a possible chance that your medical problems may be taken into account with the grading of your exams, should they be borderline. 

    Failing that You can make evquirio the examining body for your exams, but it's better for others who may have a recognised procedure to help you.  

  •  as a parent of a severely autistic son, it comes across as though your a knowledge in that area but your understanding of higher functioning adults and especially autism in women is lacking. 

    Many autistic women have friends but how they interact with these friends and the stress caused by interacting with these people is key. When I was younger I hung around in groups but found this to be so overwhelming that I coped by taking illegal drugs. At 34, if I'm in a group of more than 4 people (including me) I go in on myself and struggle to interact. Some of this is to do with how I process information as the conversation has often moved on before I have something to say. As I've gotten older and find the social demands of work exhausting I now only have one close friend and see her about every six weeks. This relationship and having a partner is all of the social interaction I need, where NT tend to crave more. 

    Autistic women spend a lot of time analysing others, which makes it easy to understand why people are acting the way they are. A key trait of autism is that many women do not know how to intrinsically respond and have copy what others have done in these situations in the past in order to appear 'normal'. 

Reply
  •  as a parent of a severely autistic son, it comes across as though your a knowledge in that area but your understanding of higher functioning adults and especially autism in women is lacking. 

    Many autistic women have friends but how they interact with these friends and the stress caused by interacting with these people is key. When I was younger I hung around in groups but found this to be so overwhelming that I coped by taking illegal drugs. At 34, if I'm in a group of more than 4 people (including me) I go in on myself and struggle to interact. Some of this is to do with how I process information as the conversation has often moved on before I have something to say. As I've gotten older and find the social demands of work exhausting I now only have one close friend and see her about every six weeks. This relationship and having a partner is all of the social interaction I need, where NT tend to crave more. 

    Autistic women spend a lot of time analysing others, which makes it easy to understand why people are acting the way they are. A key trait of autism is that many women do not know how to intrinsically respond and have copy what others have done in these situations in the past in order to appear 'normal'. 

Children
  • I was first prescribed depression tablets when I was 12 and my first suicide attempt was when I was 14. During my diagnostic assessment, I was told that these experiences were common for autistic women as social relationships and expectations become more complex as children age, epsecially during secondary school.

    I was mis-diagnosed with two MH conditions before being diagnosed as autistic due to the lack of understanding of how autism can present in different individuals and the profound effect it can have. Like you I was certain that I was autistic and knew there was a family history. Just before my autism assessment, I emailed the autism unit 8 sides of A3 full of examples of how I met the DSM-5 criteria. Alongside Jenny's suggestions creating your own document giving a number of examples of how you meet the different criteria might help to convince these individuals that they may have gotten the diagnosis wrong. Good luck!

     Here's an example of how you could do this - mamapineappleblog.wordpress.com/.../

  • When I was younger I hung around in groups but found this to be so overwhelming that I coped by taking illegal drugs. At 34, if I'm in a group of more than 4 people (including me) I go in on myself and struggle to interact. Some of this is to do with how I process information as the conversation has often moved on before I have something to say.

    This is the kind of thing that sounds so painfully familiar! It was that way at school and even now in group work I’m incredibly quiet while I process. On one particular day when I met with my partner and one of his friends he kept asking if I was ok because of how quiet I was. He was shocked when I turned out to be so comfortable around his mum. I’ve always described it as falling into the background and as if I’m watching tv. It’s not necessarily that I’m scared to interact, but something stops me. 

    I think I certainly craved more interaction but my partner does seem to satisfy that. I don’t feel the need for friends to ‘go out with’ (something I craved mostly because of its normality, I always knew clubs and bars and parties were not for me) anymore because I have him. Plus, he’s also neuroatypical and there’s some overlap with those traits.