Today’s blog post is about something very personal and close to my heart. Hopefully it makes for an engaging read as it took me a long time to write.
Since I was very young, I have been very aware that I am “different” from the people around me. In my second year of primary school, my teachers recommended that I was tested, and I subsequently received a diagnosis of Asperger’s Syndrome, a condition which officially no longer exists (more on that later). Having Asperger’s is not like having, say, ADHD or OCD. It is all-encompassing in a way those conditions are not. It gives me a completely different perspective on the world, and I would not be the person I am today without it. It has shaped me in to who I am. And, for what it’s worth, I like that person. I’m intelligent. I’m thoughtful and kind. I’m loyal, determined and true to my name, I’m very, very honest. Particularly when it comes to people I care about, I find concealing the truth extremely uncomfortable.
After that first paragraph, you’re probably wondering “Hang on, having Asperger’s sounds pretty good, so what’s the problem?”.
Well, to know what the “problem” is, you need to know what Asperger’s is. And defining it is hard, because we’re all very different people with individual personalities. You know, like…erm…everybody else, for example. The fourth edition of the American Psychiatric Association’s elaborately-titled Diagnostic and Statistical Manual of Mental Disorders defines it as a “Qualitative impairment in social interaction”, involving, amongst other things, “marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.” Now, I have some problems with the APA’s definition, not least that it makes some rather broad-brush generalizations, but at least they bothered to recognize it.
Because guess what? Now they don’t!
In the fifth edition, used by doctors around the world, including the UK, the APA deleted Asperger’s, and folded it in to a new condition called “Autistic Spectrum Disorder”, which includes Asperger’s, “classic” autism and PDD-NOS (which, by the way, stands for “pervasive developmental disorder not otherwise specified“, i.e. they don’t have a clue). In my opinion, this was a huge mistake. Asperger’s and autism are not the same. People with Asperger’s usually have no noticeable intellectual disability. We can talk, walk, drive a car, fly a plane, write entertaining blogs. Unfortunately, many of those afflicted by autism are not so lucky. It can have a much more severe impact on a person’s life, and many people with autism cannot speak, suffer significant intellectual disability and will require care for the rest of their lives.
Imagine, for a moment, all medical conditions were treated like Asperger’s. Say you go to the emergency department with a headache. The doctors run some tests, do a scan, and then they tell you you’re suffering from “Headache Spectrum Disorder”, including all headaches, from migraines to brain tumors. Imagine you told all your friends you had a Headache Spectrum Disorder, and they all assumed you were going to keel over from a brain hemorrhage in the next few days, when actually, you’re sure it’s just a migraine. This is the dilemma people with Asperger’s face, because the “autism” label comes loaded with some pretty hefty baggage. If there’s one thing I hate, it’s people assuming that because I have Asperger’s, I’m incapable of basic tasks, and more so, that I’m too stupid to notice that I’m being patronized. This attitude is extremely hurtful and demeaning, and it isn’t just something I face from random strangers. Even close friends and family lapse in to this kind of attitude sometimes, and not only is it demeaning and offensive, it’s also reinforcing negative self-beliefs. If someone tells you can’t do something, particularly if that person is close to you or a medical professional, eventually you’ll internalize it and start losing faith in yourself.
So that’s one problem that I face having Asperger’s. However, it is not, in my view, the biggest problem. The biggest problem is loneliness. Not just the “I miss my friends” kind of loneliness that many of us are feeling right now. Asperger’s loneliness is different, and without a shadow of a doubt, worse. I don’t mean to dismiss how anyone reading this is feeling at the moment, but Asperger’s loneliness is deeper and altogether more unpleasant. I know, I’ve lived it.
Asperger’s loneliness is sitting in a corner, holding back tears because you’ll never be like them. Asperger’s loneliness is talking to new people and watching their attention slowly drift away, because you haven’t got the social nuance to keep them engaged. Asperger’s loneliness is feeling like being in a game where everybody else has the rulebook and you don’t. Asperger’s loneliness is sitting alone at a table wondering why everyone else has friends and partners, but not you. Asperger’s loneliness is being called names like “spastic” and “retarded” every single day at school and not knowing why. Asperger’s loneliness is being the only child not being allowed out to play at lunchtimes; not because they were naughty, but for their own protection (this one happened to me when I was about 12 or 13 years old, because I was bullied so badly). Asperger’s loneliness is being picked last in every group activity. Asperger’s loneliness is trying your best in every social situation and constantly being met with exclusion and rejection.
But the reason it hurts most of all? It is 100%, totally, absolutely, not our fault.
We didn’t decide to be social outcasts. We’re not asocial, asexual hermits. Like everyone else, we need friendship, love, acceptance, and respect. We try our best to fit in, even going to the extent of “masking”, or suppressing our true selves for the acceptance of others. Many people with Asperger’s, myself included, have fallen in to deep depression because we feel like it’s our fault people apparently don’t like us. Tragically, suicide rates amongst those diagnosed with Asperger’s are much higher, with up to two-thirds of adults diagnosed with ASD reporting suicidal thoughts.
It isn’t. The fault lies with a broken society that breeds conformism and punishes people who break from the norm. The truth is, Asperger’s is not a disability. It is only a disability because society has pathologized it (i.e. it is viewed as abnormal) in the same way our society once pathologized same-sex attraction. Asperger’s isn’t a disease or a disorder, it’s just a way of being, in the same way a person might just happen to have brown eyes. I would go so far to say it doesn’t even need a name, or a label. We just want to be ourselves without the fear of being held back.
And that is not an irrational fear. According to the UK’s National Autistic Society, just 16% of autistic adults are in full-time employment. Let me restate that. 16%. Of course, that figure includes all autistic adults, including those with severe autism who may not be able to. But many people with even very mild Asperger’s are disadvantaged by the interview process, which require social skills we lack (or unconvincingly fake). Another factor is the increasing obsession with finding “team players”, which gives naturally charismatic and popular people a huge advantage, even if they’re not as skilled as a candidate with Asperger’s. In the social sphere, scientific studies show that neurotypical people make negative judgements of people diagnosed with an Autistic Spectrum Disorder extremely quickly. In many ways, people with Asperger’s face institutional oppression, a form of social apartheid that excludes us from friendships, relationships, jobs, and recreational activities because we are “different” or “weird” or “creepy”.
We can do better than this. For a start, there needs to be a better distinction between autism and Asperger’s to avoid misconceptions. Just separating them again would be a good start, though I rather like the idea of “neurodiversity”- it sounds very modern and very politically correct, but I think Asperger’s belongs on a neurodiverse spectrum rather than an autistic one. But more fundamentally, I want my children to grow up in a world where they are not bullied and ostracized for being different. I want them to feel like they can express themselves without fear. I want them to grow up in a world that treats them with the kindness, compassion and empathy they deserve.
But that’s up to you.
Well not just you, but you know what I mean. It will take thousands, maybe millions, of us to bring about change in society that would benefit neurodiverse people. The LGBT rights movement shows that it is possible, however. Even little things can help, like educating you, your family and your friends to raise awareness. The most important thing, though, is to treat people with ASD how you would want to be treated. Don’t patronize us, but forgive us for our social unawareness, and don’t unfairly judge our interests and passions, however unusual they may seem. Got that? Good. Chances are, you’ll find it rewarding, because once you look past our seemingly shy and awkward exteriors you will discover that we make fantastic friends, coworkers, partners, spouses, illicit lovers, etc, etc. Perhaps we need more patience, but trust me, we’re worth it!
Over the next few weeks I’ll be blogging more about Asperger’s. I want to challenge some of the common misconceptions about us, and hopefully give you, the reader, a better understanding of how we think and interact with people. I am conscious that this post makes for a long and rather depressing read in parts, but it is a very important issue for me so no, I’m not going to shut up about it. Thanks for getting this far.
Have a wonderful day. 🙂