Autism and Identity
There is a lot of stigma and misleading stereotypes surrounding autism. To name a few, that people with autism lack empathy, can’t be creative, are always unhappy and lonely, can’t be interested in people, and if they don’t need someone at their side at all times, or show any signs of independence, then they can’t be autistic. No wonder, then, that many autistics try as hard as they can to hide their autism, to try and fit in, and to not show any sign of being different. The consequence of this daily battle to appear non-autistic can be a severe erosion of self-esteem and confidence, and a feeling that your real self is ‘’dirty’’ and not accepted by mainstream society.
For many autistic people the sense of being different and a stranger in a confusing and chaotic world, has its origins in mid childhood if not even earlier, regardless of whether or not the autism has yet been diagnosed. For example, I did not experience any meaningful friendships and had no friends at all in my peer group until I was around 8 years old, and even when I finally made a friend with another girl in my class, I was regularly on my own in the playground. This was because I found it hard to maintain friendships, and I did not want to share my friend with anyone else. Although it did not bother me too much at this age, I had a growing sense that the other kids in my class saw me as strange and odd.
At secondary school, I became acutely aware of being different. I very clearly remember starting year 7 by saying to myself that my previous bad reputation amongst my classmates would be left behind, and that I would redeem myself by always being well behaved, quiet and polite. I was convinced that this would help me make friends. Unfortunately, however, it became even harder for me to make friends at secondary school because I could not keep up with the complicated small talk, gossip, and teenage group dynamics. I was told by one girl that she could no longer be friends with me because I was ‘’too clingy’’ and followed her around everywhere, and another girl unfriended me because I was too quiet and did not participate enough in conversations.
Therefore, my whole life course has been an experience of unending social exclusion and confusion. The diagnosis of autism spectrum condition when I was 21 years old helped me to make sense of my past and restore my confidence and self-esteem. However, I now had to face the stigma that accompanies the autism label. I had faced years trying to hide my autistic symptoms. For example, I forced myself to look people in the eye even when it was uncomfortable, and I subconsciously repressed my inner energy and desire to flap my hands when excited or nervous. Anything that might mark me out as different was carefully concealed and locked away, resulting in great stress and inner conflict.
In recent years, as part of my self-healing, I have decided to try and take ownership of my autism, and to not be ashamed of being autistic. To me, autism is a very important part of my identity. Frustratingly, some non-autistic people tell autistics that they should not become defined by their autism, and that they are a person before their autism, as if the two can ever be separated. Because I was so ashamed of being autistic, I used to use this ‘’person first, label second’’ language myself. But with greater awareness and insight, I am beginning to understand that autism is me. Every experience, every perception, every choice I have ever made has been influenced by my underlying brain based difference. Of course no two autistic people are the same, just as no two non-autistic people are the same. Upbringing, personality, experiences, and other personal differences all interact with the autism, but the autism pervasively interacts with every other aspect of the person’s life. I sometimes wonder whether the only reason some non-autistics are uncomfortable with the autism is my identity position, is because they have a problem with autism in some way, and wish (perhaps only secretly) that all autistics should aspire to be more like them, that’s to say, more ‘’neuro-typical’’. The downplaying of identity also serves to diminish the person’s experience of exclusion, and silences their right to self-determination or their right to define their own identity.
I think that all minority groups, for example the LGBT community, asylum seekers, religious and ethnic minorities, face a similar conflict: the desire to integrate with mainstream society, versus the desire to be authentic and not to lose their sense of self. Their identity as being part of an oppressed minority gives them something concrete to hang onto, as well as giving them access to a community of similar individuals who can offer them self-validation and acceptance. The refusal to separate your person from a label, diagnosis, or marginalised ethic group can also result in campaigns and positive legislative reforms. For example, the civil rights movement in America could only come about when oppressed minorities grouped together under the banner of their identity as gay, African American, or women, and demanded inclusion in society. Women’s groups in the 1960s called this activism “consciousness- raising’’, which meant that women were made aware of their subjugated status in society; their identity as women (and everything that this meant from a political, cultural and psychological perspective) was central to this movement.
I hope that this brief article will make people think twice before they tell an autistic person that they are more than their autism, or that there is more to identity than autism. While on one level, this might be correct, it is also something that does not need pointing out because no self-respecting autistic is going to dispute the fact that they are a unique person, and that autism is just one part of their overall identity. Yet autism is an extremely important part of their identity, which has pervasively affected their whole life. And no autistic should feel that they need to downplay their autistic identity by not talking about it or not expressing their autistic desires and needs. This is why I recently bought a t shirt off Amazon with the logo, ‘’autism, a princess thing’’, which I will try and wear proudly and confidently. The logo draws attention to the fact that autism does not just affect boys and men, and that many women are also autistic. Furthermore, in both genders, autism can be pink and cheerful, girly and fun. It is not all about computers, machines, and impersonal subjects, but can encompass colour, glitter and shine.
So I encourage other autistics to wear yourself openly, and for non-autistics to learn more about autistic culture and identity.