There is a thing that has been nagging me for quite a while. It has to do with knowing one’s own autism, and in what ways it really shows for oneself. I expect (from talking to, and reading other auties’* blog posts) that many (autistic) readers will recognize the following scenario: you have finally decided to tell someone (or maybe just ‘everybody’, say via Facebook) that you in fact have Asperger’s Syndrome (AS)/ autism. A common first response for many is: “but you seem so normal!”. And then: maybe they say it and maybe they don’t – but the inference then goes: “so you cannot have AS/autism”.
Wait. Stop. What is going on here?
That inference is based on the false assumption, that if that person cannot see it or in some other way discover it, then it cannot be right. This especially goes for family and old friends (because they know you so well, right?). First of all, they are in fact not autism experts. That is the first problem. Next, if they then ask you to explain what the defining and differentiating characteristics are, you may yourself be struggling to express in what ways you are different, and convince them that you are really autistic (and not just being ‘someone who is a little too self-absorbed and want everyone to feel sorry for them’). I have often found, that even well-meaning individuals respond: “well, I feel the same – so you see: no need to worry – you are not autistic, you are like everybody else!” Again, I have been struggling to try to express how much such a response hurts me inside, but I never seem to be able to express this properly, and in a way that others can understand. At least not in a face-to-face conversation.
Let me try to give a response now: I do NOT worry about being autistic. In fact – oddly as this may seem to the allies**/NTs*** – I worried about not being autistic, when I had my diagnostic interview. Why? The short answer is: all the explanations made sense to me, and I recognized myself in so many of the descriptions of autism (and I had spent at least two years researching before that interview, so we are talking about quite a thorough investigation!), that if this was not the thing, I would, in a sense, feel left out (again). The long answer comes here:
I first heard about autism in the form of AS, because a guy in the ‘dojo’ (i.e. club, or more precisely: training hall (in Japanese)) where I began to train the Japanese martial arts Aikido (in 2006), had just that. He had trained Aikido for many years, and knew a lot about the subject, so on many days, a bunch of us would stay a little after training, and just talk about Aikido (and a few other things). Thinking back, this would often include explanations or presentations on an Aikido-related topic of a certain length from him, but in an informal manner (we sat in sofas), and with ample room for ‘interruptions’ in the form of questions. He talked much, because he knew much. And what he had to say, was interesting to all of us, not least because his words were so fluent and created so many insight-producing pictures in our minds. And he loved talking about this subject, because it was basically one of his special interests (to put it in autism-parlance).
When I heard he had AS, I naturally asked to know more about it. His explanations focused on a good mix of strengths and weaknesses of being autistic. We developed a friendly relation, had much to talk about, and often sat in conversation for many hours after the Aikido-training had ended, together with a few others (many of whom turned out to be auties). Years later, this man became my husband, and we live a very happy life in each other’s company to this day. His explanation of AS gave me a first impression, that was not just about being disabled and having lots of problems. It was a well-rounded account of a very different way of being and living and acting in the world, compared to any mainstream account I had picked up until then (fx: to be successful you must have a partner, two kids, a dog, a decent car, a decent house, good relations with your neighbors, and see lots of friends and family on the weekends****).
In this new picture, being successful – or rather, living a happy life – could include spending long hours alone, at home, doing whatever you found most fascinating. It included having a lot of your social life happening on the internet, rather than in noisy cafés (or worse – discos) that would give you sensory overload and leave you exhausted for hours or days afterwards. It included no odd stares or hurt feelings, if you said no to going somewhere, even when you had no other plans (because sometimes you just want to stay at home).
[The above comic is by Marzi from Introvert Doodle. I absolutely love her strips – please see: http://introvertdoodles.com for more :-D]
It also included some necessary adjustments to life – like only wearing clothes made from cotton, or sometimes needing complete silence (earplugs and noise-cancelling head phones – hooray!), or sometimes panicking because you had foolishly ventured into a giant supermarket, and now felt its overwhelming sensory inputs closing in on you (an inner picture comes to mind of crawling, dark, ghoulish figures), and you know that a panic attack is about to happen and there is no escape. And that was okay too – even though it would generate some stares because of the social inappropriateness of it.
[The above drawing, which so amazingly captures the experience of a panic attack, is by .Anova titled “Dream Theater – Panic Attack”. It is from Flickr]
I think, that the auties who are unhappy about their diagnosis might be so, because it was presented to them, as the label that expounded how different (and ‘wrong’) they were. This is likely not how they feel about themselves, and so they don’t want it. (If you find, that you are one of those auties, and you read this, please feel most welcome to comment on this issue, and correct me or give more nuance to this topic, in any way you find is needed). I like to say that we are all normal to ourselves. We humans seem to have a kind of ‘default setting’ that makes us compare the rest of the world to ourselves. In a simple form this consists fx in our judgments about what is ‘small’ and ‘big’ (go on – take a moment to think about it!). In more complex situations, I believe the same is happening, but is just less clear to us.
Now back to the main theme: seeming normal to others. There is now extensive research***** showing that this is an extremely common problem, especially for women in the so called ‘high functioning’ end of the spectrum (I wonder if that is related? You are labelled ‘high functioning’ when you are not too obvious? Just a random thought that I felt was interesting enough to share). I do not know much about the problems of seeming normal to a male autie (or any other type gender or in-betweens for that matter), and if you experience the same as many of us females do. I would be very interested to have your thoughts on this in the comments too! There is something else to be said, though. Since autism is a spectrum, we cannot expect it to have a clear boundary between auties and allies either. That means, that some people will come off as bordering on autistic without seeming like a clear-cut case. That is one thing. Another is, that we humans are pretty complex to ourselves, and in my view it makes it a pretty messy field, when I try to identify traits that are specific only to auties. Instead, what I find is, that:
- Sometimes allies will have the same trait, but in a less pronounced version (like being a bit overwhelmed by big supermarkets, but not having anxiety attacks).
- Sometimes they will experience the same symptoms, but for different reasons (like being tired after a social event, but this being due to extensive intake of alcoholic beverages, or overeating, or dancing all night – rather than being due to sensory overload or extensive energy used on analyzing conversations, expectations and other aspects of social interaction).
- Sometimes they will be completely opposite (like loving that small talk that happens by the coffee machine at work – contrary to the annoyance of it because it is seems completely pointless and devoid of substance).
Only the traits that are completely opposite (and enough of them) seem to easily convince an allie that I might actually be autistic whereas s/he is not (unless, of course, we find that s/he has so many of the same experiences that s/he might in fact be autistic, but that is still the exception rather than the norm – even with rising numbers of auties). In other words, it takes a lot of time and understanding of details to see the bigger picture of a distinction (and hey – allies are known by auties to have something of a hard time noticing details to a sufficient degree, and being a bit overly preoccupied with ‘bigger pictures’. Likewise, they praise ‘effectiveness’ but often on the expense of thoroughness, and can for this reason come across as impatient – even shoddy). For these reasons, I am pessimistic (or realistic) enough to think that I/we will keep on getting these questions – at least for a very long time until a widespread understanding of autism is the case (if it ever becomes that). From now on, however, I think I will no longer try to explain it ‘just so’ and face-to-face, because I know that I will in all likelihood never succeed in giving a convincing explanation. Instead, I will give them the link to this blog post – and you are most welcome to do the same.
* auties = autistics = people who have autism (depending on how you prefer to phrase it)
** allies = non-autistic people. Also has a nice ring to it, that aligns with the word “ally”.
*** NTs= NeuroTypicals= neurologically typical (which, however, in common parlance is taken to mean ‘not-autistic’, even if that is somewhat imprecise because you may be not-autistic but still have neurologically untypical mode of functioning.
**** Note that many of the things mentioned here can be part of a happy life for the autistic too, but that it may appeal as a whole, to more allies than auties.
***** Here are a few references: