The Truth about Autism (a talk)

Hi everyone. So, the first thing I wanted to do was express just how honoured and thrilled I am to have the opportunity to come here and share my experiences with an autism spectrum disorder and what I’ve learnt from them with all of you. This isn’t entirely because I love attention. As well as enjoying having all eyes on me for a few minutes, I’d love it if what I have to say would be of use to any of you who are going through the same things as my parents and teachers did.

Just a disclaimer before I start: this talk is going to be extremely honest. No doubt all of you are used to this from being around autistic people, but I think subjects relating to psychological conditions, perhaps more than anything else, should never be sugar-coated. We need to start having open, unapologetic conversations about mental conditions, or all the social stigma surrounding them will never go away. It’s going to be hard to do this topic justice in a few minutes, especially since I do like to waffle on a bit, but here is my attempt.

I’m going to start with my own experience. Since I was diagnosed at the age of 3 and my memory is a bit patchy around that age, I can’t really tell you what the process was like, but people first started really noticing that I was different when I didn’t play as I was meant to. Instead of finger-painting, or playing ball games, or showing any desire for social interaction at all, I would sit in the corner holding a StickleBrick and I would “stim” with it. “Stimming” is an abbreviation of self-stimulatory movement, and in my case, it takes the form of twiddling an object between my fingers or playing with my hair like this *demonstrates*. While I did this, I would be deep in thought, immersed in my own imagination. Along with this, my development seemed to be skewed: my fine motor skills were abysmal, and I didn’t learn to walk until I was 2, which was around the same age at which I learnt to read. So the diagnosis I ended up with was one of Asperger’s Syndrome. Some of you will know that this technically isn’t a legitimate condition anymore since it wasn’t included in the fifth edition of the DSM, but what it meant when I was diagnosed with it was essentially that I had a milder form of autism without any verbal communication deficit. That was quite an accurate diagnosis, actually, unless you count talking too much as a verbal communication deficit!

But the problem with having behavioural conditions, like autism spectrum disorders, is that their severity must be measured against a “normal” standard of behaviour. Unlike with a physical disorder, this norm can’t be derived from how we are supposed to function biologically, but how society tells us we are supposed to behave, since society, not biology, is the source of behavioural standards. So what my diagnosis with Asperger’s, considered a less severe form of autism, said about me was that I adhered to society’s definition of “normal” enough to go to mainstream school, and in the future to get qualifications and hopefully a job, but not enough to be treated like everyone else. And this was reflected in the way I was treated.

As you can imagine, this didn’t have a great effect on me. For eight years of my life, I lived like any other child, thought I WAS like any other child, but was treated differently everywhere, from the playground, to the classroom, to the Portacabin where I sometimes attended social skills sessions. And I had no idea why. When the school tried to help me through the social skills sessions and the Special Educational Needs group to which I gave the unloving nickname “Psycho Club” it only made me feel worse about myself. The result? My special interest became conforming. I tried all these different tactics to be like everyone else: pretending to be a tomboy, then pretending to like fashion and make-up, then trying to make people laugh by making a fool of myself…and all I wanted was to be normal.

This only stopped once I found out that I had Asperger’s. This discovery happened totally by accident. We went to the library as a class and I had to choose a non-fiction book, and after much grumbling, I chose one on very basic genetics and psychology called “What Makes Me Me?” There was one paragraph in this book on autism. And I read it, and thought “Oh my God. This…sounds exactly like me!” And there you have it! There were no deep conversations with anyone; I just asked my parents if I was autistic, received “yes” as an answer, and did all the research I wanted to myself.

Now, even this wasn’t the moment of liberation that you might have imagined it to be, because all it did was make me swing right the other way. Instead of feeling as though I had to be normal, now that I knew I had a condition, I felt that I had to be “weird”! I proudly went and told everyone about my Asperger’s and tried to act “crazy” as another method of being accepted by others. One could argue that being proud of my condition was preferable to beating myself up over it, but ultimately, my mentality was just the same as it had been before: I was still trying to conform to a certain standard expected of me in an attempt to be accepted. This doesn’t necessarily have to happen to someone who has just found out that they have autism. It happened to me in particular because I was so used to conformity, because I’d spent my whole life knowing I was different but not knowing how. To solve this problem, I would definitely recommend telling an autistic child that they have autism as early as possible. This will stop them from feeling like they’ve been kept in the dark, and maybe encourage them, as it encouraged me, to learn more about their condition.

So what actually was my moment of liberation? Surprisingly, it came with change: the change from primary to secondary school. During my last term at primary, I felt as though I had to make the most of every minute I had left, and consequently it was probably the best term of my life: I formed many new friendships, got a big part in the Year 6 Production that I’ll always remember, and went on my first residential trip away from home, where I was always well outside my comfort zone and had to really be brave and take responsibility for myself. Then that summer, I began my internet presence: I started a blog. I’d always done a lot of writing outside of school, but before I started blogging it had been a bit haphazard and didn’t have much structure to it. Blogging allowed me to share and organise my work, and the internet has been a huge driving force behind my past three obsessions. Since one needn’t worry about facial expressions or body language on the internet and can easily find many people with the same interests, it is so, so useful for people with ASDs who want to connect with others. Speaking about interests, developing a special interest and finding others to discuss and practise it with can inspire real happiness and confidence in an autistic person, and it should definitely be encouraged. The internet can make these interests both more fun and stimulating to pursue, and more social.

Finally, although the switch to secondary school can seem daunting, with support, organisational help and understanding staff, it could actually improve a child’s life a lot. For me, it was a chance to reinvent myself, form new relationships and truly devote myself to my passions, which I have a lot more time for now that I don’t have to worry about conforming. And if I could only make one point today, it would be that autistic children should be allowed to do this by themselves in a conducive environment. Sure, we do sometimes need support and we should be given it if we ask, but we generally like our autonomy, and too much support will have the effect of making us feel different from everyone else and feed this unhealthy desire to conform. I can confidently say that having independence and the ability to be treated in the same way as everyone else except when it’s needed has been the biggest help to me when dealing with autism, and I’m a much happier person for it. Thank you for listening