Hello folks! Let’s talk about being diagnosed — especially when you are older. This is a more personal post rather than fact-based because I’m not even sure what facts would be relevant! Let’s get started.
I was diagnosed in the summer of ’17, or, if I’m not writing in the style of a certain Bryan Adams song, I was diagnosed with ASD in June 2017. I remember this because it was two days after my final AS exam. (Which I absolutely smashed by the way.) I had previously attended an appointment many months prior where I was asked about various aspects of my life, my view on who I am and how I approach life in general. I distinctly remember the doctor asking me, “so why do you think people get married?” to which I gave the response, “I don’t know, financial reasons?” *
*I have since thought about that question and now understand that there are many reasons people get married, aside from tax relief that is.
The other prevailing memory I have of that appointment is how aware I was of my age. As I was 17 I was still under the children’s team and so everything was set up for kids much, much younger than I was. There were lots of toys in the room I was interviewed in, and yet I was never once asked if I wanted to play with them! —The honest answer would have been “yes”; the self-conscious answer would have been “no”. All the chairs were really small and the tables surprisingly low. I found it difficult to concentrate on what I was being asked because there were so many colourful toys and items, that I found the whole situation slightly overwhelming. On top of this, the doctor and I were sitting opposite each other at a comically tiny table, and she was studying my face quite intensely. I understand now that this was likely to try and see my reactions but at the time it felt as though she was really trying for eye contact, something I could not return.
I evidently “passed” that section of the assessment however, as I was told I would get a call in a couple of months about the final assessment. A couple of months turned into quite a few months and eventually my Mum called them enquiring about whether they had forgotten my existence. They confirmed they had not forgotten and that they would be in touch shortly. My Mum then followed up with a slightly leading question about whether or not I would need a diagnosis before I started applying to university as it could affect the application process. As I understand it, the person on the phone asked my Mum to hold, and after a few minutes came back to the line saying that they had an availability in June, and would I be available then?
Fast forward to the day of the appointment and my Mum and I attended together as I had to bring a parent or guardian with me. My Dad was at work, otherwise he would have come as well. In the time that had passed, my parents had had to fill in a questionnaire about me, as had the welfare officer at my school. I never saw these questionnaires, so I have no idea what was asked or how they were answered. I am assuming it was along the lines of, “is your child confident in their ability to make friends?” rather than “What do ya think? Autistic: Yay or nay?”
The appointment itself was significantly less scary that I had imagined it would be. There were two people doing the interview whose job titles I do not remember. My Mum, the two ladies and myself all sat in a room on a chair each and they asked us questions which we answered. I was uncomfortable at first and one of the women commented on how I wasn’t looking at them and I was holding myself in a very tense manner. I said, “sorry,” and attempted to sit up straighter and move my gaze to their face. I suspect what I actually succeeded in doing was looking more uncomfortable.
The questions they asked were very open ended which resulted in me giving quite brief, to-the-point answers and my Mum trying to prompt me to say more when I fell silent. It wasn’t that I didn’t want to answer, I just didn’t know what they wanted me to say. Eventually we came to the second part of the interview and my Mum went into another room with one of the assessors while I stayed behind with the other. She said that if it would be easier for me, we could turn our chairs so we weren’t facing each other directly. I replied that that would be helpful, and so we talked at a diagonal slant to each other. I don’t remember the specifics about what we discussed but I remember her being very interested in how I find it difficult to read other people and find conversations really tiring because they take so much work. She asked if I found some materials to be painful on my skin that other people thought were fine. I said no but explained how noise seems so much louder and harsher to me than to other people. I also said that lights can be very difficult and even on an overcast day I still find the world a bit too bright. When I said that florescent, bright or flashing lights are really painful, she was writing notes at a speed I didn’t previously think possible.
She also asked about my friendships and whether I had really good friends. I said that I had friends that I enjoyed spending time with, but that it sometimes felt a bit difficult and that we seemed to enjoy doing different things. I explained that they often wanted to meet at someone’s house and have music on and ‘chill’. I have never understood how to just ‘chill’ and I find doing some sort of activity, at least to begin with, much easier as there are more defined rules about what I am supposed to do. I said that the music hurt my ears and made me feel really overwhelmed, especially when people were also talking and dancing. I added that I also don’t drink as the thought of losing control really scares me, and while I don’t mind people drinking around me, when people are really drunk they tend to be very loud and unpredictable. An intoxicated person is generally more likely to touch me, more likely to shout and more likely to do something that I wouldn’t expect. I hastened to add that I loved my friends and liked spending time with them at school, but that sometimes it was hard in social settings. The activities we did were never really something I enjoyed, and I usually had to leave early because I was overwhelmed or not attend at all.
Eventually, my Mum re-joined us and we were asked to wait outside for a bit while they discussed everything. We were not waiting very long however, before they came to fetch us and brought us back to the room. When we sat down they told me that they agreed that I have ASD, before giving a brief overview of what it is and what the next steps were. They said that the school would be informed and gave me a couple of websites I could look at for resources. It didn’t take very long to explain and soon my Mum and I were walking back home.
As we were walking along the path towards our house, I remember asking my Mum what she thought of the appointment. She said that it seemed very professional and happened quite quickly. I then asked about telling the others (my Dad and siblings), and she said that she would sit them down and tell them about the diagnosis at dinner.
I don’t know what exactly it was, but I remember that sentence giving me an awful sinking feeling in my chest. Up until that point I had been thinking about how great it was that I finally had an answer to the things that were bothering me. I was thinking about all the things I wanted to look up and wondering if there were other aspects about me that were due to my ASD. However, when my Mum said that sentence I suddenly felt slightly foolish. To sit them down felt so formal, as though it was bad news. I had been planning on going into their rooms when I got back to tell them. The use of “the diagnosis” also felt odd. I started wondering if I was reacting wrongly, as though I should have been concerned or possibly ashamed about having ASD.
I later understood that my Mum wasn’t trying to imply anything like that and she was just trying to wrap her head around it all. We talked at a later date about that day and she admitted that she wasn’t really sure how to react to the news. Her daughter had just been diagnosed with a lifelong condition that had previously gone unrecognised. She mentioned feeling some guilt about not realising sooner, especially as I had been having so many problems because of it. My Mum is an incredibly practical woman, so she was thinking about what “the diagnosis” meant in terms of practicalities and what could be done to help me. While it did hurt my feelings and send me into a spiral about how I should be reacting to the news, she didn’t mean to do that and just chose the wrong words.
We later told the rest of my family over a dinner of pasta with tomato sauce. My Mum explained what ASD was and assured them that I was still the same person. This is again slightly problematic as it makes it sound much more taboo, but this too was just her not thinking about her words. The only reaction I remember from the rest of my family was that of my sister who said “yeah, I figured,” before continuing to eat.
That evening I spend a lot of time researching ASD, especially in women as I knew that it often presented differently. My initial joy at having found an answer was still present but was now competing with my feeling of confusion about whether or not it was a good thing. The studies I read online were all very negative and used words like “deficient.” I tried to find some first-hand accounts but they were mostly from the perspective of parents of autistic kids. I didn’t want that because it wasn’t applicable to me and my life. One of the most popular ones is a blog entitled “the good, the bad and the autism,” something which certainly didn’t help to assuage my confused shame. It took a while before I became more comfortable with the idea of being autistic and that really only came when I started reading books written by autistic writers about their experiences. Eventually, I began to warm to the idea that being autistic is perfectly okay, and I started loosening my grip on what I deemed to be “acceptable behaviour” for myself, allowing myself to stim when at school rather than only when I was alone. I learnt that what I had always called “being Sara” —my neurotypical alter ego— was actually called “masking,” and so I began to try and cut myself some slack when I forgot to put on the right facial expressions, rather than cursing myself for being too tired and failing.
Another huge thing that I began to do was to stop forcing myself into situations that I knew I would hate and would cause me pain. Having a name as to why I found things so difficult really helped me. It was as though it gave me permission to start making adjustments for myself. I had always worried about being a burden to others or being called awkward for not wanting to do something that everyone else liked. Hearing that I was autistic was the first step to being able to stop beating myself up for not managing to conform. It gave me a freedom that I had never afforded myself: the freedom to respect myself.
I will not lie to you, respecting, and indeed liking, myself is still sometimes an issue. The first 17 years of my life were spent aggressively trying to force myself to be the same as everyone else and punishing myself when I inevitably failed. I turn 21 this month and those extra years have not been enough for me to completely overhaul my entire belief system. I am working on it and I have made significant progress but there is still a way to go. I know that not everyone likes labels and I would never put them on people who do not wish for them, but being given the label “autistic,” really helped me. The world is so confusing, and so having a word to help explain things was very important to me and still is. Autistic or not, no one should force themselves to be like everyone else. It feels so easy to make generalised statements like this, and yet it has taken me a while to realise that this also applies to me. Being diagnosed was scary because the process was unknown. I now recognise that although I was frightened, it was one of the best things that could have possibly happened to me. Not just because it helps me access support, but because it ultimately helped me learn how to live.