It is quite something to be told, in a solemn, slightly apologetic tone, that you have lived 34 years of your life without the benefit of a huge and necessary piece of information. It feels rather like those gags in sitcoms where a character is perplexed by a puzzle, such as a locked door, only to find out at the end of the episode that the key has been right there, under the mat, all along.
Five years ago, I was told by a psychiatrist, who had spent many hours with me asking incredibly in-depth questions about my life, that I am autistic. I had begun to explore the possibility after the birth of my first child: the sudden shift to being responsible for a whole life had hit me like a concrete block, and in casting around for explanations for why I was struggling so much, I stumbled across fascinating lists of traits and behaviours associated with autism.
Poring over them, ticking them off mentally, I quickly realised that much of my experience to date – even before becoming a father – was identical to the autistic experience I saw in these lists, questionnaires and online quizzes. So much of it chimed with personality quirks that I had, to that point, put down to just being “eccentric” in some vague, ill-defined way. Armed with an enormous handwritten summary of all of this, I spoke to my GP and the diagnosis procedure began.
Six months later, after being given this final, hugely significant chunk of information about myself – I was autistic all along – I began a kind of unconscious gradual re-evaluation of everything that had ever happened to me. At the time, I likened it to de-fragmenting a computer’s hard drive – that lengthy progress that you are meant to do every now and then to keep your laptop healthy and fast. Nowadays, I am more likely to compare it to re-watching a movie with a huge twist: now you know that Bruce Willis is actually dead, you see every single scene in a whole new light.
Unlike watching The Sixth Sense again, however, it is a very time-consuming and tiring process: not least because as you scan through all those horrible moments you endured at school, at work, in social situations, you realise that you had had no chance to begin with. The deck was stacked against you from the start. You identify a moment of acute social embarrassment that occurred 20 years ago, and relive it, identifying how being autistic caused the moment to happen, and understanding (with no small dose of bitterness) that it could have been prevented if only people had known.
The world is beginning to know more about autism. The world has been experiencing “World Autism Awareness Day” (on April 2) and its month-long unofficial counterpart since the UN launched it for the first time in 2007. For 15 years, the world has been made more and more “aware” of autism. This is, to a point, fine – after all, you need to know that something exists before you can work to accommodate it and celebrate it – but I cannot help feeling that there is limited ambition at work here.
I spend most of my time writing and speaking on the topic, pushing for autism acceptance and appreciation. More than simply being aware of us, we want people accepting us for who we are and appreciating us for our difference. Sadly, as things stand, the vast majority of autistic people are so used to being mocked and ostracised for our differences that we hide them and wear a “mask”, pretending to be neurotypical (that is, not autistic or neurodivergent in any way). This “masking” – which, incidentally, some of us are so unconsciously good at that we even fool ourselves, as I did for 34 years – is exhausting, difficult and will eventually break us.
As a result, it is really important that the neurotypical majority accepts us for our true selves, and accepts our autistic behaviours and traits. Unfortunately, World Autism Awareness Day and Month do not do very much to achieve this aim, as despite undoubted good intentions, they are now mostly used by businesses and organisations to help them feel good about themselves for simply knowing what autism is.
So, what can people do to help autistic people – really help, actively, to improve lives? Luckily, there are a number of very easy things that can be done right now, for free. All they tend to involve is a willingness to open your mind a little to the fact that you share this planet with a wider variety of people and behaviours than you may have realised.
First, when talking to an autistic person, child or adult, try to avoid using those strange passive communication games. You know what I mean: the whole “I’ll just hint that I want a cup of tea rather than ask for one” type of game. Autistic people, for the most part, tend to communicate with absolute clarity and mean what they say. Trying to read other, implied meanings into what an autistic person might say will often lead to huge problems. Take what we say at face value, and offer us the same courtesy.
Second, do not go around demanding that autistic people make eye contact with you or shake you firmly by the hand. These may be big cultural symbols in your world, but in the autistic culture (and I am more and more convinced that this is a thing), these actions are meaningless and unnecessary – mostly because both cause us terrible discomfort. Maintaining eye contact is, for huge numbers of autistic people, like staring at the sun. It is not painful so much as extremely intense, with an acute and growing sense you are causing yourself terrible damage. Shaking hands is similarly tricky because so many of us have real sensory sensitivity that makes physical contact – especially with strangers – deeply unpleasant.
Finally, sometimes autistic people experience what we call a “meltdown”. Like any other human, we have a ceiling of how much stress we can reasonably absorb before snapping. Unlike other humans, we tend to live with our stress levels already elevated almost to this point. As a result, autistic people are far more likely to hit that ceiling frequently, from stressful stimuli that others may easily absorb without incident.
In terms of what could help us – the previous two suggestions will help prevent us hitting that ceiling in the first place, which is very helpful already. If we do hit our ceiling, then my best advice is to allow autistic people to escape the source of stress. Even if that source is you. Too often, autistic people in meltdown are forcibly kept close to the stress source (especially in school as kids), which is just about the least helpful action possible. Wherever possible, allow an autistic person to escape the stress so they have the chance to calm themselves on their terms.
I live in hope that society can change to allow autistic people to live their best life; ideas such as these are a starting point. For more information, feel free to follow me on Twitter or any of the huge number of autistic advocates on that platform and other social media sites.
The views expressed in this article are the author’s own and do not necessarily reflect Al Jazeera’s editorial stance.