Video Documentation of Autistic Action #1 by Annette Foster
photography and video by Rachel Parry
Adventures of Super Aspie Grrl the beginning
I have been trying to start this blog for two years. Each time I get up the courage, I somehow make an excuse to myself that it’s not good enough. I am very good at making drafts and then never publishing them. Actually I think that is my speciality!
I am a multidisciplinary visual performance and live artist, PhD researcher and autism self advocate. I was diagnosed six years ago at the age of 39 with Aspergers and it has taken a long time for me to accept myself, and I am still working on it. As soon as I was diagnosed I knew that I wanted to make visual and performance art work about my experience of autism. Once again it took me 4 years to finally get up the courage to start making the work. My first action for this project was done almost two years ago on November 28th 2015, which just happened to be Black Friday.
I wanted to come out as Autistic and make a statement.
To say I am Autistic, I am here, I exist.
To say I am not invisible.
I envisioned that I would stand on a busy pedestrian street with a sign around my neck that just simply said Autistic. This was a very strange experience as I stood on the street for an hour silently waiting for something to happen. Nothing did, I had done this to feel less invisible and hopefully create a dialog with the public in some way but not a soul spoke to me. They just walked on by. Many people ignored me completely or looked at me out of the corner of their eye. Some people did smile and read the sign. Maybe this experiment was more for me than other people? I felt extremely anxious throughout the experience, as I normally do most of the time anyways, but this was different, it was as if I was going to be struck by lightning, just for being open about being autistic. I wasn’t struck by lightning, actually nobody really cared. Maybe this had to do with the frantic Black Friday spending spree and Christmas shopping going on? Maybe people thought I was a beggar? Or they thought the sign read artistic, which is a lot less controversial. Maybe people don’t know enough about Autism to approach me?
I started coming out as autistic very soon after my diagnosis, as I felt that people should know that autistic people can be anywhere and that not everyone on the spectrum is defined by the stereotypes. We are your neighbours, the woman that walks her dog past your house, the guy sitting next to you in the coffee shop, and your colleagues at work. At the time I was an art lecturer in a college and I was already very out about my dyslexia and dyspraxia. I felt it was important for my students to see that having a specific learning difficulty doesn’t necessarily have to hold you back. So when I was diagnosed with autism I felt very similar and decided to be upfront with my students and colleagues about my diagnosis. I believe that if a young person is exposed to different types of people early in life and is encouraged to be accepting of their difference, they are more likely to be accepting of anyone that is different from them. So that by being out as autistic, I was doing something positive, how ever small for the autistic community.
I cannot tell you how many people have told me that I am not autistic, because I am not like their brother, their son or their more severely affected child. That I must be very high functioning then and lucky. Or that my diagnosis is just outright wrong because they don’t see me as autistic.
Or that they never would have known I was autistic, if I hadn’t have told them.
Or they ask why would you get a diagnosis so late, does it really matter you seem normal?
I remember telling my friend’s adult autistic son about my diagnosis, he said nonchalantly, “they are just diagnosing anyone, now.”
I find these comments hurtful and offensive. It’s not a compliment to tell me this. I know most people mean well, but I have finally found a community that I actually fit in to and no one is going to take this away from me. I had a diagnosis of autism at the age of 39, after years of mental health issues and misdiagnosis and it makes sense. I have always felt different, but I didn’t know how I was different. I don’t think anyone should have the right to tell me that I am not autistic because I don’t fit into their own understanding (or stereotypes) of autism.
I know that the reason for all this doubt about my autisticness, is that I still pretend to be normal and really it is all smoke and mirrors, at least for me. I am very good at pretending, performing which is probably why I became a performance artist. I learned early on if you didn’t have social skills such as eye contact with people you were left out. As a teenager, I taught myself to look people in the eyes when they spoke to me, even though I found it intrusive and it made me feel vulnerable. I watched what others did and mimicked it, I learned how to fit in, or at least be under the radar, but I was still frequently singled out for my difference. Examples of this are I end to take things literally and do not always get jokes, I am also very clumsy. I was bullied and picked on for random things like the colour of my hair (pee apparently) because they knew that I would react and be upset by this.
I was told I was too sensitive and I still felt out of control, confused and baffled by what other people did and said. I found the sensorial world overwhelming and painful, but I appeared, for the most part, to be ‘normal.’ This has been referred to as the ‘camouflage effect,’ (Rynkiewicz 2016, Bargiela, Steward and Mandy 2016) “…the act of pretending to be normal or neurotypical.” (Baldwin and Costley 2016) I never really fit in and was always on the outside looking in, wondering why I found it hard to communicate with people socially, why everything seemed to annoy and upset me and why I couldn’t make friends and keep them.
I am working on teaching myself how to be ‘my autistic self,” if that makes sense. I learned early on that many of my behaviours were not socially acceptable and I was told not to stim, to look people in the eyes, to act normal. So now I am trying to relearn who I am. I have spent my whole life trying to please people, trying to figure out what people want and I tried to be that person. I lived so many different lives, taking on other people’s personas, habits, interests, but none of them ever really fit. This all had a devastating effect on my self worth and mental health.
I was constantly told that who I was, was not good enough,
that I was too sensitive, that I was not paying close enough attention, that I just had to try harder, that I should stop willfully trying to be difficult and I believed it and I believed it
So much so that still, to a certain extent I have no idea who I actually am. The only thing that did fit was art. I was accepted, to an extent, in the art world because artists are taught to see the world differently, to notice all the things that others don’t. I could do this very well. Artists are encouraged to play and take on other personas. I had been doing this all my life. I could use visual metaphor to explain my own experience to people, I could show people how I understood the world. I could create experiences through installation, costume, sound, video and performance that immersed people into aspects of ‘my’ world. And it was accepted as art. Even celebrated sometimes.
As a late diagnosed woman on the spectrum I have felt quite isolated and outside of the autistic community, let alone the wider world. Maybe l will always be an outsider? To some extent this is due to my lack of communication, I find it hard to reach out to people, even my friends and immediate family, most of the time. I dread answering the phone, I find it very difficult to approach people, I even find social media stressful, what do I say, can I comment on that? What if they don’t know who I am and are offended? What if I say something stupid? One way that I am good at communicating is through my art, so as a multidisciplinary visual performance artist I wanted to create Autistic Actions that infiltrate everyday society and highlight women, nonbinary and trans people experience on the spectrum.
I feel that the diagnosis criteria for Autism is male biased and because of this there is a lost generation on the spectrum that do not fit into this narrow and essentialist definition of Autism. This is partly due to psychologist and autism expert Simon Baron-Cohen’s (2003) “Extreme Male Brain Theory,” This oversimplified theory states that most autistic people are more ‘systematic’ which Baron-Cohen states as ‘male typical’ rather than ‘empathic’ which he sees as ‘female typical.’ Baron-Cohen postulates that this comes from too much prenatal testosterone. Baron-Cohen looks at something very complicated, the neurodiversity of a community and states that all autistic people are male typical brained and in so doing, “promotes a view of autism that reinforces cultural stereotypes of gender” and “essentializ[es] gender differences by rooting the condition in biological maleness.” (Bumiller 2008; 973 also see Jack 2011, 2014 as quoted in Davidson 2014) This has led to misdiagnosis, mental health problems, eating disorders you name it. Also Davidson (2007) has noticed a gap in the clinical literature in relation to the lack of visibility of women on the spectrum. She sees this as an “understandable bias” due to statistics stating that the male to female ratio is 4:1, thus most clinical studies are about male children. To be fair Baron-Cohen has majorly back pedalled and put his name to an article in 2015 that states, “Autism should not be perceived as a ‘male condition’. Females should no longer be underrepresented in future autism research.” (Lai, Baron-Cohen and Buxbaum 2015) This is a step in the right direction and things are finally changing, but once again how many autistic people had to suffer due to the ‘Pathology Paradigm’ (Walker 2010)? Which is the assumption that there is a ‘normal’ way that brains should work and if your brain does not work like that and you think and behave in different ways from neurotypicals your difference, is wrong and needs to be eradicated.
My mission is to find as many women, non-binary or trans people on the spectrum as I can, whether they are officially diagnosed or self-diagnosed, and give them an opportunity to tell their story. I would like to develop a body of visual and performance art works collaboratively with other women and non-binary people on the spectrum that expresses an understanding of Autistic Spectrum Condition. I would like this to go beyond stereotypical representation of autism as a male disorder. So I applied and was accepted to do a funded PhD in Drama exploring how to articulate women’s, nonbinary and trans people’s experience of autism through participatory live art and performance. I am in my first year and realise I have so much to learn, I feel like I have just scratched the surface really. I plan to start my first workshops with other people on the spectrum in January 2018.
Bargiela, S., Steward, R. and Mandy, W., 2016. The experiences of late-diagnosed women with autism spectrum conditions: an investigation of the female autism phenotype. Journal of autism and developmental disorders, 46(10), pp.3281-3294.
Baldwin, S. and Costley, D., 2016. The experiences and needs of female adults with high-functioning autism spectrum disorder. Autism, 20(4), pp.483-495.
Baron-Cohen S. The essential difference. Penguin UK; 2004 Mar 4.
Bumiller, K., 2008. Quirky citizens: Autism, gender, and reimagining disability. Signs: Journal of Women in Culture and Society. Available at: http://www.journals.uchicago.edu/doi/full/10.1086/528848 [Accessed June 7, 2017].
Davidson, J. & Tamas, S., 2016. Autism and the ghost of gender. Emotion, Space and Society, 19, pp.59–65. Available at: http://dx.doi.org/10.1016/j.emospa.2015.09.009.
Jack, J., Autism and gender : from refrigerator mothers to computer geeks, University of Illinois Press, Chicago, 2014
Lai, M.-C., Baron-Cohen, S. & Buxbaum, J.D., 2015. Understanding autism in the light of sex/gender. Molecular Autism, 6(1), p.24. Available at: http://www.molecularautism.com/content/6/1/24.
Rynkiewicz, A., Schuller, B., Marchi, E., Piana, S., Camurri, A., Lassalle, A. and Baron-Cohen, S., 2016. An investigation of the ‘female camouflage effect’in autism using a computerized ADOS-2 and a test of sex/gender differences. Molecular autism, 7(1), p.10.
Walker, N., 2012. “Throw Away The Master’s Tools: Liberating Ourselves From the Pathology Paradigm,” Loud Hands Autistic People Speaking, The Autistic Press, Washington DC