autism

Inside the Autside – on autism & identity

For “UP”, the publication of the Dutch organization Lister, I wrote this piece on autism and identity, in which I discuss forming an identity and expectations, prejudices about autism, and having an “autistic identity”. The Dutch (slightly shorter) version can be read here. All comments are very welcome.

When the scientist talks about a type, he never means himself, but always his neighbour; probably his poorer neighbour. I don’t deny the dry light may sometimes do good; though in one sense it’s the very reverse of science. So far from being knowledge, it’s actually suppression of what we know. It’s treating a friend as a stranger, and pretending that something familiar is really remote and mysterious. It’s like saying that a man has a proboscis between the eyes, or that he falls down in a fit of insensibility once every twenty-four hours. Well, what you call “the secret” is exactly the opposite. I don’t try to get outside the man. I try to get inside.

from: “The Complete Father Brown Stories” by G. K. Chesterton, page 489

What’s on the inside of a human being? A soul, a core, a personality? The philosophical question would be: ‘what makes a person the same person at different times, even if that person changes physically?’. I think and I doubt, so I am? I feel, too. I feel, for example, that I am one whole being. That feeling of being a unique and inwardly coherent person despite all the changes in relation to others, is what psychologist Erik Erikson summarizes in the word “identity”. This includes your self-image (all your impressions, ideas and perceptions about yourself), your self-knowledge (your own knowledge of and about yourself) and your self-awareness (the condition that you can be yourself separately from your surroundings).

Often it feels as if you have multiple identities. A social identity, an online identity and so on. Some people assume a different identity by dressing up. An agent feels different in uniform, just like the pastor in his/her gown. And cosplayers and reenactors like to play their superhero for a day. Or a cuddly fox. Or a knight or a princess. This way you become, as it were, someone from a different universe and/or from a different gender. Yet in all those roles you remain the same person. Although I behave differently towards a client than towards my best friends, my identity is the same. With such self-awareness, my “self” must be in my brain. And my brain, well, it’s autistic.

Identity formation and expectations

For people with autism, forming an identity is not always easy or self-evident. Many of us perceive the world and ourselves in a more fragmented way. My own memories, for example, are more of a disordered mountain of Polaroids than a tightly edited film. This lack of cohesion sometimes leads to confusion about roles and self-image. It sometimes seems as if people with autism cannot (or do not want to) form a fixed identity. Many of my friends with autism change hobbies and professions very often, and with each change they seem to take on a different personality. That’s actually not so remarkable when you consider that your identity largely develops in dialogue with your surroundings. It is not for nothing that the famous psychologist Abraham Maslow placed the need for social contact as the most important thing in his pyramid, just above basic needs such as food, drink and sleep.

“As a young girl, it was my greatest desire to connect with other children.” writes Anne van de Beek. “I observed the behaviour of the most popular girl in the class and tried to imitate it.” Afraid of being excluded, especially women with autism continuously try to adapt to their surroundings. But this camouflage of “code-switching” (Bianca Toeps) and “pretending to be normal” (Liane Holliday Willey) takes its toll: if you play the same role for hours each day, the boundary between that character and your own person fades. Just as I can no longer imagine not ever being able to read, swim or cycle, I also often don’t know what really belongs to me and what I’ve only learned because it’s how it should be. Sometimes I still find out that something I’ve been doing all my life doesn’t really fit in at all. And that’s okay.

Identity is a journey. We travel through life becoming and discovering ourselves. There’s no shame in living with uncertainty, or in changing your label(s) as new information comes in.

Robyn Ochs

Expectations of yourself and others can make forming your identity much more complicated than it already was. “You’re going to the conservatory, of course!” said my music teacher. But the French teacher would find it “a real shame” if I wouldn’t do “something with languages”. And my maths teacher… you guessed it. With the latter, let’s call him B., it was extra complicated, because B. was in love with me, and I with him. Through the pink glasses of our mini-psychoses, we naturally projected all sorts of things on top of each other. And suddenly I became assertive and self-assured – the opposite of B.’s (soon to be ex-)wife – a role in which I was played out as soon as the euphoria about the relationship subsided. The impact of the environment on the identity of someone with autism is often so large because we work so hard to meet all expectations (such as unwritten social rules). As a result, we sometimes have no idea who we really are. We feel like a non-persona, an empty vessel. And the fear of the unknown identity – or: the lack of identity – can be overwhelming.

Prejudices about autism

For me and many other people with autism, the diagnosis was a turning point in our lives. Finally all the pieces of the puzzle fell into place – we’re not sick, broken or disturbed, we’re just different – and we were able to rewrite our life story from this new identity. And sometimes that can be quite a quest. There are few good role models left for people with autism and the stereotype of “The Autistic” is a white nerdy boy, someone like Sheldon from The Big Bang Theory. And yes, I do know people with autism who are a bit like that. But I also know African-American women with autism, for example.

Preconceptions about autism have major drawbacks. Because of them, receiving the diagnosis gets belated, and based on preconceptions, people can also feel resistance to the diagnosis. I myself often encounter the prejudice that I would not be able to feel empathy or compassion, a trait that would make me less human – and therefore valuable – as it were. (Just to be sure: empathy may work for me in a different way than for neurotypical people, but I can do it). And because of all the camouflage, I also suffer from the prejudice that my autism is not a big thing, that I will be okay, anyhow, that I can manage without help if only I wanted to.

As a piano teacher for autistic children I also often came across prejudice. For example, the (often parental) idea of the “musical child prodigy”. Certainly, many of my pupils had an absolute pitch, for example, but that did not necessarily make them interesting musicians. At the same time, some parents saw autism as a curse, an enormous misfortune that had happened to them and their offspring. Yeah, right. Of course, sometimes framing autism as a handicap can help, for example to get therapy and other help reimbursed. But for me it is no burden, it remains a different way of being in the world. The obstacles I encounter are therefore not only because of my autism, but because this society is not designed for my neurotype.

My cracks are not only mine. I am hypersensitive to sound; that is my condition. But that wouldn’t be a limitation, if the world were a little quieter.

Asha ten Broeke

Or take the example of architecture for the person in the wheelchair: the ramp or the elevator allows someone to enter a building. But that is often decided outside the wheelchair users, as an “extra” to the existing building, and still a hassle, a detour, and unsociable moreover, because walking people automatically take the stairs. In the same way, other aspects of life will probably always cost me more effort. I don’t mind that in itself, but it is important that there is open and clear communication about it, in which expectations and prejudices are questioned and nuanced.

An autistic identity

“Finding a way to describe identity, similar to a diagnosis, can be very empowering for some people, and may also decrease feelings of being alone or the only one” writes Meredith R. Maroney. But how do you find yourself, and a way to describe yourself, as a person with autism? “Having no idea who you are. Look at your past, and see all kinds of fragments that you find difficult to relate to each other. Have no idea what your personality is, even if others say that you have a `strong personality’. I’ve had that my whole life, and now that I know I’m autistic, I’m starting to understand something about it, and who knows, I might even be able to do something with it.” Sylvia Stuurman writes on her blog. She embraced her autism as the umbrella under which she can place all her different identities and roles.

Other inspiring examples? My friend L. works as an experience expert / peer worker, and she also volunteers for AutiRoze (for LGBTQ+ people on the spectrum). And my friend E. combines her interest in jobs with her eye for detail in her own company. Many of the autistic women I know are so-called “multipotentialites”, very creative and with many different interests, in which they can discover different aspects of their identity all the time. In the words of ‘Aspergirl’ Rudy Simone: “It does seem to be a trend, for some of us, to have a changeable personality either based on our current role model, or changing interests”. And I think that’s actually very positive. By making (volunteer) work of your special interests, you can realize yourself as a person with autism, lead a meaningful life and contribute to the world, based on the knowledge that our brain simply functions in a slightly different way than that of the average person.

Psycho-education

Knowledge about autism is therefore very important for the identity formation of people with autism. And it feels like someone starts nipping at our heels when we run into expectations, prejudices, or even harsh denials. With her book title “but you don’t look autistic at all” Bianca Toeps hit the nail on the head. I myself experienced this with the girl who was once my best friend: “No, you really are not autistic, you know, I know people who are autistic and they are really very different, they behave differently and look different and all that”. Consistently replace the word “autistic” in her claims with “lesbian” and you see how her argument completely derails. Unfortunately, even professionals often fall into this trap of expectations and prejudices. “Yes, you may think you have autism, but of course I don’t have to agree”, said the GZ psychologist in the first few minutes of our first conversation. Short circuit in my head.

Denial of my autism touches on many painful memories for me, in which the image I have of myself was denied by those around me. The teachers at school who thought I was just an annoying and lazy child, because I often didn’t understand their assignments. The teenage girlfriend who called me “selfish”, because I couldn’t magically feel what she needed. And well after my diagnosis, the psychologist mentioned, who wrote in her report that she thought I was “a distant woman with schizoid tendencies” and saw no evidence of autism. The psychiatrist called her off and in the meantime she has been officially reprimanded for a similar situation with another client. (She’s even blacklisted online.) Still, it remains painful. Autism is the blueprint of the wiring in my head. It is my manual and my way of being in the world, an edifying and meaningful part of my identity: I am Martine – and I am an Aspergirl.

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