”Invisible” difference

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Me as a teenager, intensely looking at a Kate Winslet picture while on holiday. ”Anna, won’t you put that down and look at the view”, my mum would say. An example of a strongly social autistic interest.

Autism is one of the most stereotyped conditions. The media has been influential in disseminating the popular image of autism as being a white man who is mathematically or musically gifted, great at interpreting patterns and code breaking, and generally very cut off from the social world.  Autism is unequivocally portrayed as something extraordinary, beyond mainstream comprehension, as almost magical in its distance from ordinary human experience.

The problem with this narrow portrayal of autism is that autism encompasses a huge variety of different expressions, not all of which are immediately obvious to the naked eye. The media latches on to the most obvious versions of autism because they provide the viewer with titillating ”eye candy”, and perhaps there is a concern that less sensational portrayals would bore the viewer by being, well, too ordinary and banal. Unfortunately, a huge swathe of autistic experience is therefore erased from public consciousness, and this has damaging repercussions for diagnosis, support, and acceptance.

If you believed all that was sold to you by the media , you might be forgiven for thinking that there is just one type of autism. You know the one: a male, usually a child, overtly avoiding eye contact, rocking in a corner, coming out with socially inappropriate statements on a regular basis, so literal in their use of language that communication is virtually impossible, and obsessed with trains, computers, or spinning wheels.

Now there are obviously autistic people out there who  manifest this version of autism, and in a sense they are the lucky ones. This is because they are more likely to be diagnosed in early childhood and to get the right support. No one doubts that they are autistic, and they are unlikely to experience the maddening scenario of being told, upon disclosing their diagnosis, ”I would never have known, it must be very mild!!!”.

Yet autism is not always visible. As autism is a neurological difference, it affects the way a person processes the world around them, and this is largely an inner, subjective experience. Any behaviour that is displayed, such as rocking, avoiding eye contact or pacing are just coping strategies that might be deployed by the autistic person to deal with their inner world. But people are different in terms of how they deal with their subjective experiences, and some people prefer to internalise their stress. In an autistic person this might take the form of trying very hard to fit in by not drawing attention to their difference. So they might quietly and unobtrusively try and participate in conversations, despite the fact that inside every nerve fibre is on fire with tension, and their hands might be tightly  clenched into fists beneath the table. This attempt at being social can be  so exhausting that the person might need days or weeks to recover on their own,  possibly rocking and pacing behind closed doors,  yet it’s possible that no one  would have any inkling as to how severely their autism affects them.

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Little me at the end in the clown’s costume, during a school fete  – not connected to the ”wireless”, and feeling overwhelmed.

A common misconception is that autism severity is  heavily linked to intellectual ability and language acquisition. Therefore, if an autistic person stutters, stammers, has a monotone voice, or cannot express themselves very well, someone will probably say that they ”appear very autistic”, as if autism can be measured along a sliding scale. The truth is, you are either autistic or you are not, but each autistic person will have a different constellation of strengths and weaknesses, some of which might be visible and some that might be invisible. In my case, language is a strength, and I can verbally express myself pretty well most of the time, although I really struggle with small talk and maintaining conversations. Yet because I have spent years observing other people and copying their behaviour, I am now able to maintain a conversation to the extent that my communication difficulty might not be noticeably apparent. Inside I am on edge, full of tension, because conversing with another person does not come naturally to me;  I am busy trying to work out what is going to happen next, what should I say, how shall I say it, how to respond to their question, and where to look and how to generally comport myself.  All the other person sees is the output, a bit like when you go to the theatre you are watching the output of an actor’s intensive memorisation of a script. The actor is probably experiencing a lot of adrenaline, and possibly even stage fright, but a good actor will not externally reveal the slightest bit of anxiety on stage.

I suppose I must be a pretty good actor in the art of emulating non autistic social practices. But it comes with a catch: because socialising is so intense, it feels like I am hard at work, doing a job I have not been paid to do, and which I don’t get any recognition for doing because the struggle is so invisible. This is why I need a lot of time on my own. I can feel very isolated and even lonely when I am with other people, because I feel on a different wavelength to them (it feels as though non autistic people are connected to an invisible wireless that I cannot connect to). My sense of self and identity feels very fragile because of the dissonance between my conformist, fitting in behaviour and the inner experience of disconnection and isolation. Spending time on my own is restorative because  I am very sensitive to other peoples’  judgments and assumptions about my autism, which can wreak havoc on my psyche; to be told, for example, that your autism ”must be mild” when they have not spent just one day in your panic filled body or have experienced a lifetime of social exclusion, is too painful to hear.

I can talk well. I am expressive. I smile and can show an interest in another person. Some of these behaviours have been painstakingly learnt over the years, while some of them are just part of who I am as a person. After all, one of the greatest autism stereotypes is that autistic people by definition are not interested in other people. And while there will be autistic people who fulfill this stereotype , there will also be autistic people who are very interested in the social world and in other peoples’ lives. Social communication and interaction difficulties can, and do, exist hand in hand with social motivation , and this is a most painful dissonance. Yearning for social connection, trying to emulate non autistic behaviour,  and yet not being able to find true human connection because of that disconnect from the invisible wireless I mentioned earlier, is deeply alienating and soul destroying.

All my interests have been social in nature; from food and culinary practices to the study of the human body to the  actress Kate Winslet, babies and child development, philosophy, psychology and politics. I am not the stereotypical autistic person of popular imagination. But I am very autistic. Every autistic person is very autistic, because  it would flout the logical law of non -contradiction to say otherwise (this states that to be rational a proposition must not contain a contradictory clause).  I mean, can you imagine  being a little bit non autistic? This of course brings me back to the obvious: Autism is diverse, and each autistic person is an individual that cannot meaningfully be compared to any other autistic person. As the circular entreaty goes, ”once you have met one autistic person, you have met one autistic person”. Quite literally. And now go out and meet some more. We can be amazing  and extraordinary you know, but also quite  ordinary  too…well, perhaps with a little extra stardust added, but you might need to search for it.

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