LIVING WITH ASPERGER’S SYNDROME
Matt talks about living with Asperger’s Syndrome, dispelling some harmful myths about people with autism.
I am autistic.
From the age of three, when I started school, it became apparent that I was “unusual”, “strange” and “different”. For five years my parents and my teachers ignored my quirks, simply accepting that I was denser than other children, didn’t understand sarcasm or idioms and had trouble looking at people when I spoke to them.
I took instructions VERY literally. On one occasion, when I was about seven years old, I was told to take a seat. In response, I picked up a chair and asked where I should take it.
When I was eight years old my parents and teachers finally decided that it was time I saw someone about the way I was. I suppose you could call the woman I ended up seeing on a semi-regular basis a child psychologist, but that wasn’t how I thought of her at the time. To me, she was just the woman who spoke to me slowly and treated me like an idiot. Of course I knew that to ‘take a pinch of salt’ wasn’t an instruction, and that ‘raining cats and dogs’ wasn’t literal. But gradually, over time, it became apparent that this woman knew what it was about me that made me different, and when I was nine we finally got a diagnosis: Asperger’s Syndrome.
LIVING WITH ASPERGER’S SYNDROME
Asperger’s is one of several learning disorders that falls under the umbrella term ‘autism’, and it tends to be one of the ones that most people are aware of, even if they don’t know its name.
Asperger’s is the type of autism that allows some people who have it to memorise entire films after seeing them once, work out complex maths problems mentally in moments or look through a deck of cards and be able to recite the cards’ order backwards.
These tend to be the most extreme forms of Asperger’s, however. It’s far more typical for someone with Asperger’s to simply have a better than average long-term memory, or to have an incredibly narrow interest. This is where I fall. I am not a savant. I can recall conversations in perfect detail years after they took place and recite the name of every English monarch since William I, but I am NOT a savant. My autism is so mild that I am almost a neurotypical (someone without autism), and it may take months or even years after meeting me to realise that I have Asperger’s.
But it’s always there. My Asperger’s doesn’t turn on and off like a tap. It’s constant, informing every action and every decision. Every word I say is uttered through the Asperger’s filter, just as every facial expression is made through it.
Might I seem mostly (dread word) normal but a little bit odd? That’s my Asperger’s.
Did I just make a slightly inappropriate joke? Asperger’s.
Did I ignore you whilst you were talking to me? Asperger’s.
I’m not making excuses, by the way. I’m not suggesting I should get away with murder because I have this disorder. Quite the opposite. I really don’t want to be treated any differently.
Alright, that isn’t true. I do need to be treated differently.
Please don’t give me more than two or three instructions at a time – and for God’s sake speak slowly when you give them to me.
Please don’t force me out of my comfort zone. I’ll get there in my own time, when I’m ready.
But you don’t need to walk on egg shells around me, either. This is where media portrayals of people with autism are so bloody unhelpful. We’re represented either as superhuman savants or as mute and helpless. There are people who fall into both categories, some at the same time. But the vast majority of us aren’t like either stereotype, and it’s very difficult to try to break people’s preconceptions of the disorder.
More than once in my life, I’ve been told what autism is like by someone who didn’t have it.
“But you’re autistic! How can you have friends?”
Um. I always assumed they enjoyed my company.
WE ALL HAVE DIFFERENT TRIGGERS, OR AUTISTIC EPISODES
“But you’re autistic! How can you possibly go on public transport?”
I can go on public transport because it’s not a big deal to me. It is to other people with the same disorder, but each of us has different things that trigger what we might call ‘autistic episodes’.
For me it tends to be conflict, arguments between friends and family and being mocked. In the most extreme cases I’ve been known to curl into a ball in a corner, cover my eyes with my hands and just weep for long minutes. At other times I might go very quiet, curl my hands into fists and start kicking the ground with one leg. Or I might suddenly find it difficult to make eye contact.
And worst of all, sometimes there’s no trigger at all.
There are plenty of days when I ‘feel’ more autistic than usual. Those are the days where it’s an effort to speak, and when I do I’m usually irascible, unfair and overly harsh.
Those are the days where I might spend a whole conversation with you looking at the nearest wall.
It’s not a reflection on you, it really isn’t. It’s just that I’m finding it uncomfortable to look at your face, however lovely it might be, and it’s far easier to look at the faceless wall.
WE ARE AUTISTIC, NOT ILL.
People with autism, of whatever variety, are not ill. This is so important to get across. We don’t need, or want, a “cure”. There’s nothing to cure.
This is where I get so angry with the charity Autism Speaks, because whilst purporting to be a charity that champions people with autistic disorders, Autism Speaks is, in fact, a mouthpiece for hateful bile towards us.
It’s a charity for neurotypical people who have had their lives ruined by the unbearable burden of having an autistic child, or parent, or other close relative. Autism Speaks do all they can to present us as a problem that needs to be fixed, and they have earned my hatred for it.
We are not a problem, and it dehumanises us to suggest that we are. What we are is different, but no less deserving of love and life than neurotypicals.
Yes, we need to be treated differently, but we aren’t asking for so very much – merely understanding and patience.