How being diagnosed with Asperger’s syndrome changed my life for the better
As I write this, I am on the Eurostar from St Pancras International to Lille, embarking on a solo holiday. A three day solo trip may seem like a small thing to whatever a “normal” person is but for me, it’s a hell of an achievement and something I’m incredibly proud of myself for doing.
That is because I am an autistic person. In the summer of 2012, I was diagnosed with Asperger’s syndrome after a childhood defined by alienation from my peers, having drastically different strengths and weaknesses to everyone else, and committing a lifetime’s worth of faux pas.
It’s not just that I’m autistic though. I was born with a cleft lip and palate and while surgery was immediately undertaken to correct my upper lip, I was still left with a cleft lip that I’ll have for the rest of my life, which brought along a whole stream of issues. The biggest of these issues was that my speech was significantly impaired. After I started off in a mainstream nursery and was simply unable to communicate with anybody, the nursery I attended and my parents realised it wasn’t working. So from the ages of four till eight, I attended two special needs schools in London.
A special place
Special needs school for a sports obsessed kid like me was a hoot, a pip and a dandy. Playtimes seemingly lasted forever, there were weekly trips to the local library and at one of the schools, we regularly went to Valentine’s Park in Ilford, plus the school had its own adventure playground and swimming pool. When we did have formal literacy and numeracy lessons, I was the cleverest one there. I’m incredibly thankful and grateful for what special needs education did for me.
At this stage, I didn’t know I was autistic and had frankly never even heard of autism. No-one mentioned it to me and though I did seem to be different to other people, I just assumed I was different in the same way everyone is different to everyone else.
There were always signs though. I was cripplingly shy at social gatherings. I played for two football teams and never made a friend on either. I was terrified of being told off at school and would cry at the merest hint of a teacher having a go at me. The only teacher who ever did admonish me for doing a task wrong was a supply teacher, meaning for years after I was phobic of supply teachers and would feel sick with nerves all day if we had one. Sometimes I’d literally pray for my normal teacher to be in school that day, even though I grew up in a strongly atheist household.
Secondary school went badly: I was bullied for a while and routinely called a retard and a spastic. When you’re at secondary school, with self-consciousness at its height and teenagers jockeying to head up their own social circles, you’re punished for being different. They prey on the weak; at least that’s what it felt like for me.
Throughout college, I still didn’t know I was autistic. However, after about three months at university, I finally pieced it together. I was reclusive and – being surrounded by smiling, happy young people who presented at least the facade of enjoying themselves – I found it pretty hellish.
After countless internet searches wondering why I behaved like I did, I read about Asperger’s syndrome. Just reading about it, realising I had most of its effects and there was nothing fundamentally wrong with me, the relief was indescribable. I was formally diagnosed in the summer of 2012 and, from that day forth, I have sought to work on my weaknesses and now have far greater knowledge of how my brain works and the things I have to improve on. Without wanting to blow my own trumpet, today I have a full-time job, a social life I’m happy with and enough money and curiosity about the world to type this as my train shoots its way through the Channel Tunnel.
I try to encourage such positivity because too much of what is said and written about autism is negative – how autistic people can’t socialise and are all nerds with glasses who live with their parents, don’t have a love life and spend their time watching anime clips on YouTube and playing computer games. People might not say that explicitly, at least in print, but beneath the surface it is the sort of image too often perpetrated by people who should know better.
So, let’s talk about the positives of being autistic! Many people with Asperger’s have fantastic memorising skills, amazing levels of focus and concentration, and great creativity. Also, in my opinion, they have tremendous levels of compassion. Autistic people are often branded with the charge that they don’t or can’t experience emotions. Balderdash! It’s because, in my view, the emotions would be so overwhelming to them that their brain, as a defence mechanism, prevents them from experiencing them. When I heard Joe’s mum say just this in the BBC’s recent drama The A Word, my heart soared. I felt, as those other popular TV characters Mulder and Scully might have said, that the truth was out there.
A changing world
This is an exciting time for the autistic community. There have never been more autistic characters on out television and cinema screens. With Saga Noren in the Scandinavian drama The Bridge and Benedict Cumberbatch’s portrayal of Sherlock Holmes, characters with strong autistic traits have become icons, with a real whiff of sexual attraction about them. Having sexually attractive autistic characters in our popular culture is a positive and important step; it represents huge progress on the familiar portrayal of all people with autistic traits as social inadequates. Of course, what would be an even more positive step is for TV executives and producers to stop merely hinting that a character might be on the autistic spectrum and flat out say that they are autistic. That’s something to fight for in the future.
Veteran politician Neil Kinnock once said about being the first Kinnock in “a thousand generations” to go to university: “Does anybody really think that they (his ancestors) didn’t get what we had because they didn’t have the talent or the strength or the endurance or the commitment? Of course not. It was because there was no platform upon which they could stand.”
For those with autism, and those with other SEN, his words ring true. With the right opportunities, with our life experiences and our talents, we could offer so much and achieve great things. We need to allow those who are different to live the life they choose, not just to dream dreams and face constant rejection and discrimination from employers, people in the street and those in the media who dictate agendas. We have so much potential and it’s right there, ready to be unlocked.
Jack Howes, who was diagnosed with Asperger’s syndrome in his early twenties, works as Data Operations Officer as the National Autistic Society:
Asperger’s syndrome: changes to criteria
Asperger’s syndrome was replaced with the collective term “autism spectrum disorder” in the most recent edition of the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM – 5), published in 2013.
While the DSM is very influential, it is not the main set of criteria used in the UK where there has been no change to the way autism and Asperger’s syndrome are diagnosed.