This post may come as a surprise to some people but I think it’s about time to talk about this in the open.
My name is Liz, I’m 34 and a Mum to a 7 year old girl…
And I think I might be autistic.
That is a sentence I never really imagined myself saying, mainly because until recently I was really quite ignorant about autism and just how broad the spectrum really was. I’ve always struggled socially and have done things I just considered my “odd little quirks” (everyone has those, right?) but I just put this down to social anxiety, depression or any number of other things.
I spoke in another blog post about how some months ago I found myself getting involved in scepticism and science advocacy. In doing so I made friendships with many adults who are on the spectrum which deepened my understanding of it as well as my respect for it. But it wasn’t until one day when I received a random message from a friend that I ever thought it could apply to me.
Now this is not because I thought that all autistic people are the stereotype pushed out by hate groups such as Autism Speaks, or the ableist and vile anti-vaxxers who treat their autistic children as if they are damaged or broken. This is mostly because I always assumed that, as I’d managed to mostly cope with social interaction as a child and teenager, that my issues weren’t really….real. That it was “just mental illness” that made me feel this way.
A few months ago a friend messaged me out of the blue. She had reservations about approaching me in case I was somehow offended by the suggestion. She suggested that maybe I should look into the possibility that I was autistic. She had experience with it and said how she’d noticed a few things that made her think that maybe I was on the spectrum. The suggestion took me by surprise but I was in no way offended, why would I be? I don’t see autistic people as lesser human beings, just different. A few things she said made sense so a little seed was planted in my mind.
Curiosity got the better of me and I thought “why don’t I try one of those online test thingies and see what it says.” So I looked around for advice on what tests might be the most useful and bookmarked a few to look at later. When I finally got around to doing the tests I had a few to work through. I took one which came back “high probability of ASD”, so I took another. And another. And another.
They all came back the same.
Now I’m aware that online tests aren’t the most accurate and certainly shouldn’t be used as any sort of diagnosis tool but at the same time I couldn’t help but think there must be SOMETHING in it for so many to come back with such high scores. I started to notice the kinds of things that were asked which must have pointed towards certain traits. I spent time reading up on the “signs” on different medical websites. The more I read the more one thing became very clear.
That sounds like me.
Little things I’d never even considered before like light sensitivity (I cannot leave the house without sunglasses on, no matter what the weather, because the light hurts my eyes), an aversion to certain food textures (certain things I’m so affected by even the thought of them is like a serious phobia), struggling to pick up on conversational cues (I’m constantly talking over people without realising) and repetitive motions/fidgeting I do to calm down or distract myself from stressful situations. And these are just the tip of the iceberg.
My next step was to reach out to a few autistic friends I had who I’d become very close to. I felt like a fraud. I was worried people would think I was making stuff up for attention or that maybe I’d offend them in some way by making the suggestion that I was like them. Don’t ask me how that works, Anxiety Liz doesn’t make a whole lot of sense sometimes. But they were very receptive and supportive.
I would ask them about the traits they had and so many of them were things I could relate to. Then as I got more confident I started to offer experiences of my own and they could also relate. One very dear friend invited me to join an autistic Facebook group so that I could see for myself some of the experiences of other people who live this every day.
One thing became clear quite quickly and that is that getting a diagnosis as an adult is very difficult, especially if you’re a woman. The diagnostic process is generally centred around children, more specifically, boys. Many people have said to me that girls seem to be better at hiding it and presenting as neurotypical. This was something that really struck a chord with me as I thought back to my own experiences growing up.
As a child, from the outside it probably looked like I was very sociable. I generally didn’t have any problems making friends. However something that I’ve become painfully aware of recently is that it never felt natural. I remember feeling like I had to play act at being normal. I had to pretend to be someone who was sociable. It felt really odd for me to be like that, but I kept pretending until it almost became second nature.
Things which I have put down to depression and anxiety for many years are now starting to come to the forefront of my mind, and they are suddenly making much more sense. Most of the time I feel very detached from reality. Like I am a spectator watching my life happening to someone else. Now this doesn’t mean the emotions I feel don’t affect me, or that they’re not real, the love I have for my family is most definitely very real. But the mundane practicalities of going about living day to day life I feel very disassociated from. I’ve been trying to think of a way to word this feeling for ages to really try and get it across to anyone who doesn’t understand but it’s incredibly difficult. I still don’t think I’ve managed to describe it accurately. It feels like acting…almost.
Social interaction is where I notice it most. Keeping that mask up was easy when I was a child. Now as an adult it is absolutely exhausting. I find myself totally zoning out while I’m talking to people. I don’t know what’s expected of me in a conversation. Small talk with strangers feels like rolling in broken glass and then running a marathon.
I also found out that putting a lot of time and effort into special interests or obsessions was quite common. Often when I get into something I throw myself into it so much that everything else just becomes irrelevant and unimportant. It can be frustrating at times because I may need to spend some time doing something else but it’s like my brain can’t get out of the gear it is in focusing elsewhere. It is obsession to the point of almost being frantic.
Another thing I’ve been looking into recently is executive dysfunction. This is trouble with keeping on top of daily tasks, prioritising and organising etc. I always put it down to me just being a shit person at organising stuff but the feelings and descriptions of Executive Function Disorder (common in autistic people) were so true to my experience it was almost uncanny.
All of these things kept falling into place. Like pieces fitting into a puzzle I didn’t even know I was looking at. I started to really wonder if maybe this WAS me, because it sure as hell sounded like it.
Now the intention of this piece is not to try and paint myself as an autistic person who can speak with authority or experience on the subject. For all I know it might be “just” social anxiety mixed with a few other odds and ends. I might be just looking into it too much. This is why I feel like a fraud. In this day and age where people are accused to seeking attention if they write about their struggles, it is sometimes scary to put yourself out there. I might be wrong, so I’m not speaking with absolute certainty.
But I am going to pursue a diagnosis and see what happens. I have an appointment on the 26th of April with my GP. I will be writing about the process. My thinking is that if I do end up being diagnosed, then there must be other people who are out there who are like me. Not really knowing. Not really understanding. People who feel guilt for the way they are. People who know they are flawed and no matter how hard they try and live up to society’s definition of “normal” (for want of a better word) will always fall short of expectation.
Not because they are less than. Not because there’s anything “wrong” with them. Just because they are different. Because society’s standards don’t quite fit them like they do most other people.
I was really worried about writing this piece. I almost didn’t. I didn’t want people thinking I was attention seeking. I didn’t want autistic people thinking I was trying to speak for them. I was worried I’d maybe used some terms wrong or that I would say something unintentionally offensive (if I have, PLEASE tell me). Mostly I was worried that people who knew me would look at me like I was bonkers and wonder why on Earth I was thinking this way.
But I felt that this needed to come out. I wanted to start being more open about my journey, no matter where it takes me. I wanted to maybe reach out to someone who could be in my position and show them they’re not alone.
Also, I wanted to thank each and every person who has given me advice over the last few weeks. You have pretty much changed my life.
To those thinking I am jumping the gun or getting carried away, you may be right. If you are I won’t shy away from it. I’m not ashamed that I’m looking for answers, or where those answers might be.
I will never be ashamed of who I am. I am Liz. I’m 34 and a Mum to a 7 year old girl…
And I think I might be autistic.