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 large and necessary piece of information. It rather feels like those gags in sitcoms where a character is confused by a puzzle, like a locked door, only to find out at the end of the episode that the key was there all the time, under the rug.
Five years ago, I was told by a psychiatrist, who had spent many hours with me and asked incredibly profound questions about my life, that I was autistic. I began to explore the possibility of the birth of my first child: the sudden shift to being responsible for a lifetime hit me like a concrete block, and as I tossed around for explanations as to why I was struggling so hard, I stumbled fascinating lists of traits and behaviors associated with autism.
By looking over them, ticking them off mentally, I quickly realized that much of my experience to date – even before I became a father – was identical to the autistic experience I had in these lists, questionnaires, and online quizzes. have seen. So much of it played along with personality traits that up to that point I had laid down that I was just “eccentric” in some vague, poorly defined way. Armed with a huge handwritten summary of it all, I talked to my family doctor and the diagnostic procedure began.
Six months later, after being given this last, extremely important piece of information about myself – I was always autistic – I began a kind of unconscious gradual re-evaluation of everything that had ever happened to me. I compared it at the time to defragmenting a computer’s hard drive – that long progress you have to make every now and then to keep your laptop healthy and fast. These days, I’m more inclined to compare it to watching a movie with a big twist: now you know Bruce Willis is actually dead, you see every scene in a whole new light.
Unlike watching The Sixth Sense again, however, it’s a very time-consuming and tiring process: not least because you look through all those horrible moments you’ve endured at school, at work, in social situations, you realize you had none. chance to get started. 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, identify how autistic the moment was, and understand (with no small dose of bitterness) that it could have been prevented if people had only known .
The world is starting to know more about autism. The world is experiencing “World Outism Awareness Day” (on April 2) and its month-long unofficial counterpart since the UN first launched it in 2007. For 15 years the world has been made more and more “conscious”. of autism. This is fine up to a point – after all, you need to know that something exists before you can work to accommodate it and celebrate it – but I can not help feeling that there is limited ambition at work here.
I spend most of my time writing and talking about the topic, and insist on autism acceptance and appreciation. More than just being aware of us, we want people to accept us for who we are and appreciate us for our difference. Unfortunately, as things stand, the vast majority of autistic people are so accustomed to being mocked and ostracized 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” – with which some of us incidentally are so subconsciously good that we even fool ourselves, as I have done for 34 years – is exhausting, difficult and will eventually break us.
As a result, it is really important that the neurotypical majority accept us for our true self, and accept our autistic behaviors and characteristics. Unfortunately, World Autism Awareness Day and Month do not do much to achieve this goal, because despite undoubtedly good intentions, it is now mostly used by businesses and organizations to help them feel good about themselves because they simply know what autism is.
So, what can people do to help autistic people – really help, actively, to improve lives? Fortunately, there are a number of very easy things that can be done for free at the moment. All they tend to involve is a willingness to open your mind a little to the fact that you share this planet with a greater variety of people and behaviors than you may have realized.
First, when talking to an autistic person, child or adult, try to avoid those strange passive communication games. You know what I mean: the whole “I’ll just say I want a cup of tea rather than asking for one” type of game. Autistic people usually tend to communicate with absolute clarity and mean what they say. Trying to read other, implied meanings into what an autistic person may say will often lead to major 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 your hand firmly. These may be great cultural symbols in your world, but in the autistic culture (and I’m 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 large numbers of autistic people like staring at the sun. It is not painful, as much as extremely intense, with an acute and growing feeling you are causing yourself terrible harm. Shaking hands is just as difficult 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 we break. Unlike other people, we tend to live with our stress levels already increased almost to this point. As a result, autistic people are much more likely to hit that ceiling regularly, from stressful stimuli that others can easily absorb without incident.
In terms of what we can help with – the previous two suggestions will help prevent us from hitting that ceiling in the first place, which is already very useful. 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 are kept close to the source of stress in a crash (especially at school as children), which is about the least useful action possible. Where possible, allow an autistic person to escape the stress so that they have a chance to calm themselves down on their terms.
I live in the hope that society can change to allow autistic people to lead their best lives; ideas like these are a starting point. For more information, feel free to follow me on Twitter or any of the large number of autistic advocates on that platform and other social media sites.
The views expressed in this article are those of the author and do not necessarily reflect Al Jazeera’s editorial views.
