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Queerness and me

Queerness. It’s a word that I hid from for over 30 years, and yet, as I type it, I find myself feeling a deep comfort. I have long known that the space between myself and “typical” society is far greater than the purported six degrees of separation. I have at times considered that gulf to be one of existential orders of magnitude. The concept of “alone in a crowded room” is not alien to me. Nothing much is alien to me, except perhaps (at times) myself.

Being Autistic is a core part of my sense of Self. I understand myself through the lense of Autisticness, I embody my neurology unapologetically. Of course, there is far more to my experience than being Autistic. I am also Schizophrenic. Some might pity me, offering me sympathy for my mental illness. Illness is a word that does not sit right with me.

Schizophrenic, yes. Unwell? If I was unwell, should it not be quantifiable? A value that can be measured by a body that lacks the homeostasis that allows it to function properly.

No, I am neurodivergent. That doesn’t mean I don’t suffer, but I believe we must externalise suffering into the environment. Suffering does not arise in the Self, it is a function of inhabiting a space that was not meant for you.

So where does queerness fit into this?

I have come to understand that there are boundaries between the typical and atypical bodiment of the self. These boundaries are man made structures. Social conventions waiting to be transcended. Much like the way I transcend the convention of neurotypicality, delving into divergent neurology, I find myself openly subverting all expectations placed upon myself.

Queerness, to me, is not about who I love. Who I feel attraction to is such a small part of my queerness. In my universe, queerness is the subversion of a reality that has been imposed upon me. If experiencing psychosis has taught me anything, it’s that reality is not a fixed point. While being Autistic has taught me that society’s truths about what is and isn’t “normal” are closer to the machinations of a propaganda machine than anything objectively true.

No.

I am Queer because I do not belong in normative society. My neurology has made it impossible to assimilate. My queerness manifests from the urgency of an existence that requires me to carve out and defend a space to exist in. The boundary I push is the need be contained. I permit myself to take up space. I permit myself to experience my reality.

In many ways, My queerness or perhaps, my neuroqueerness, has allowed me to bookmark a place in my own story, one in which I can let go of the self-hatred for my bodymind’s tenuous relationship with reality.

It is okay to feel what I feel. It is okay to think what I think. I am no more defined by the intrusive nature of my traumatised thoughts, than I am by the colour of my hair. They are a small part of a wider human structure. It’s okay for me to admit that my sense of Self is constructed from interactions with others. We all build ourselves from the words uttered about us and to us.

Queerness doesn’t feel strange to me. It’s a liberation from the chains of normative violence. It’s freedom to think and feel without the moral judgements imposed by society through me. It is freedom from policing my own existence. It is existential liberation.

Creating Autistic suffering: Failures in identification

This article was co-authored between David Gray-Hammond and Tanya Adkin

Trigger Warning: This article contains discussion of systemic abuse and trauma inflicted by professionals. Some of the research cited contains person-first language and other problematic or ableist language. There is also discussion of sexism and racism.

The first part of this series looked at the trauma that Autistic people experience on a daily basis from birth, perhaps even before birth. We did this so we could start to paint a picture of why so many Autistic people experience what would be considered “poor outcomes”. In this next part of the series, we intend to dive into the issues around the identification of Autistic people.

Criticisms of “autism theory” and how it relates to identification

Let’s set the clock back just short of 100 years. In 1939 a man called Sigmund Freud died. This man, considered the father of psychoanalysis, had come to the end of a life focused on “emotional disturbances” and “unhealthy developments of the human mind” which he attributed to negative experiences in early childhood (Adkin, T.; 2021). While it’s true that childhood experiences can shape our adult lives, what we need to look at is how we define “unhealthy developments of the human mind” and, more specifically, how we define “unhealthy”. We need to bear in mind that “disordered” is defined by society.

“A mental disorder is a syndrome characterized by clinically significant disturbance in an individual’s cognition, emotion regulation, or behavior that reflects a dysfunction in the psychological, biological, or developmental processes underlying mental functioning.”

APA. Diagnostic and Statistical Manual of Mental Disorders (DSM-5) (2013)

The problem with Freud’s theories was that they implied that any deviation from the neurotypical mind was an “emotional disturbance” or an “unhealthy development”. He did this before autism had even been conceptualised, setting the stage for a great deal of the ableism that Autistic people now experience. From there it just gets worse.

Now let us look at the work of Leo Kanner. Kanner conceptualised autism and gave birth to autism theory in 1943. As expected, his theories on the development of autism were wildly problematic. Kanner believed that autism was related to the mother and child relationship; to be specific, he believed that the “refrigerator mother” was what led to Autistic children.

In 1944 we also had the extraordinarily controversial work of Hans Asperger and his “little professors”, but because Kanner got there first, the accolade of identifying autism went to him. Asperger’s work wasn’t really popularised until Lorna Wing revisited it in the 1970’s. Lorna Wing introduced the the work of Asperger back into the narrative towards the end of the 1970’s (Silberman, S. 2015).

From that foundation research into autism got worse and worse, with Bettelheim claiming that autism was the result of psychological harm, inflicted on children by their mothers. We also have Ivar Lovaas who is well known for comparing Autistics to animals, or blank slates who are not completely human. One thing that’s not well known about Lovaas is that he believed that behaviour was imprinted onto children by parent-child interactions. Therefore implying parental fault and building on existing theory, giving him a green light to develop abusive “therapies”.

Jumping forward, we have the massively (un)helpful theories of Simon Baron-Cohen et al. This particular individual has more or less shaped the modern understanding of autism, and he did this while getting pretty much everything about the Autistic experience wrong. According to Baron-Cohen, we lack theory of mind, an ability that (in his opinion) makes us human.

“A theory of mind remains one of the quintessential abilities that makes us human.”

Baron-Cohen, S. (2001)

It doesn’t exactly take any mental gymnastics to see the implication that Autistic people are not human. Baron-Cohen also brought us other hits like extreme male brain theory (Baron-Cohen, S.; 2002).

Baron-Cohen’s work led to highly problematic rhetoric in autism theory, especially sexism.

“Some of us also struggle with understanding our gender, or lack of gender, and there aren’t always words to express our feelings. Add this with alexithymia, an inability to articulate or understand our own feelings, and we are in for one rocky ride! No wonder so many of us sit in these two closets for so long.”

Munday, K. (2021)

Thanks to the historical work of so called “autism researchers”, we have entered into a world where autism is seen as a condition of young, white, males. Thompson et al (2003) concluded that:

“most of what we believe we know about autism is actually about males with autism”

Thompson, T. et al (2003)

What we are seeing here is not a “different” kind of autism, it’s sexism. It is a failure to take account of the different societal influences that impact people on opposite sides of not just the well known binary of genders, but the entire spectrum of gender diversity. It also completely disregards autistic masking. It also does a huge disservice to people who were assigned male at birth, but do not fit the expectations of societal norms; completely ignoring the fact that regardless of whatever gender we identify with, we are all neuroqueer by our very existence (Walker, N. and Raymaker, D. M.; 2021).

“Just as the prevailing culture entrains and pushes people into the embodied performance of heteronormative gender roles, it also entrains and pushes us into the embodied performance of neurotypicality—the performance of what the dominant culture considers a “normal” bodymind.”

Walker, N and Raymaker, D. M. (2021)

The sexism in autism theory is obvious, but what is often left out of the conversation is that, yes, researchers are often talking about boys, but more so, it’s always about white boys.

People of colour are typically diagnosed later, if at all, and face a harder time accessing services, as a result experiencing poorer outcomes (Broder-Fingert, S. et al; 2020).

“Empirical data on the mechanisms of inequities are generally lacking, although traditional contributors (structural racism, prejudice, education, income) are certainly at play.”

Broder-Fingert et al (2020)

“When I—as a black person, as a woman, as an autistic adult, as the mother of black autistic children, as an advocate—think about the world of autism research and practice, the words of Doughboy come to mind. In a poignant ending scene from the late African American director John Singleton’s iconic debut film, Boyz n the Hood, Doughboy sadly remarks, “Either they don’t know, don’t show…or don’t care about what’s going on in the hood.” Similarly, when it comes to autism, either they—or should I say you all—do not know, do not show, or do not care about black, indigenous, people of color (BIPoC) very much.”

Giwa Onaiwu, M. (2020)

What does this lead to?

Unfortunately all of these issues in autism theory lead to a lack of identification, which in itself is a passport to support. Without our needs being met by that support, we enter a world where Autistics are so traumatised that it is difficult to identify what an untraumatised Autistic person may look like. The diagnostic criteria itself is based on Autistic people in distress (Gray-Hammond, D. and Adkin, T.; 2021).

Formal diagnosis is indeed a privilege, in America it’s common for individuals to spend thousands on diagnosis. In the UK waiting lists for NHS diagnosis are often up to 4 years+ long, forcing many to take the private route to diagnosis. Which we will cover in more detail in the next part of the series by looking at systemic failures in accessibility to services.

All of the above separates us from our sense of self, our peer support, and our community. Three things that hugely contribute to good mental health and wellbeing in Autistic people, along with a sense of belonging (Botha, M. et al; 2021). It is vital that the Autistic community continue it’s work to change these problematic narratives.

“The multifaceted community which includes elements of belongingness, social connectedness, and political connectedness is a vibrant, and welcoming space for autistic people”

Botha, M. et al (2021)

Bibliography

Adkin, T. (2021) Parent Blame. Where does it come from? tanyaadkin.co.uk

American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders (5th Edition).

Baron-Cohen, S. (2001). Theory of mind in normal development and autism. Prisme, 34(1), 74-183.

Baron-Cohen, S. (2002). The extreme male brain theory of autism. Trends in cognitive sciences, 6(6), 248-254.

Botha, M., Dibb, B., & Frost, D. (2021). “It’s being a part of a grand tradition, a grand counter-culture which involves communities”: A qualitative investigation of autistic community connectedness.

Broder-Fingert, S., Mateo, C. M., & Zuckerman, K. E. (2020). Structural racism and autism. Pediatrics, 146(3).

Giwa Onaiwu, M. (2020). “They Don’t Know, Don’t Show, or Don’t Care”: Autism’s White Privilege Problem.

Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic suffering: In the beginning there was trauma. Emergentdivergence.com

Munday, K (2021) Teenage, Queer and Autistic: Living in Two Closets. AIM for the Rainbow. Rainbowaim.com

Silberman, S. (2015) The forgotten history of autism. Ted Talk. Ted.com

Thompson, T., Caruso, M., & Ellerbeck, K. (2003). Sex matters in autism and other developmental disabilities. Journal of Learning Disabilities, 7(4), 345-362.

Walker, N., & Raymaker, D. M. (2021). Toward a Neuroqueer Future: An Interview with Nick Walker. Autism in Adulthood, 3(1), 5-10.

Autistic, Ace, and dating: A complicated affair

The world of dating is complicated and nuanced. There are unwritten social rules everywhere, and often, unrealistic expectations. I am lucky now to be in a relationship with a fellow ace whom I love dearly, and accepts me as I am, but prior to this, I took 8 years off of dating.

Here’s why.

I am an autistic male. Autistic men are often seen as “creepy” because we love intensely, are socially awkward, and deeply passionate about our (often) very niche interests. Even those of us who mask, find people losing interest as soon as they learn we are autistic. Stereotypes are abound about autism.

I am also asexual. This presents a unique challenge for a world that expects men to be overly sexual. Toxic masculinity tends to judge men on their willingness to engage in regular sex. In the past I masked my asexuality with hypersexuality, which was deeply traumatic.

Living on the intersection of these two identities means that I am never what is expected of men in the dating world. I am not the confident “alpha male” that toxic standards want me to be. I can go years without sex (most recently I went 8 years without sex), not through celibacy, but purely because there are other forms of intimacy I prefer.

I had resigned myself to a life of solitude because I didn’t see a world in which anyone would be interested in me. Once I dropped the mask, people seemed less attracted to me, romantically speaking.

When I joined dating apps I felt that I was just going through the motions. I hadn’t even recognised my own asexuality. So you can imagine my feeling of serendipity when I met a woman who was asexual (but had not advertised it).

She helped me come to terms with my own asexuality, and accepted every part of me. It was a vital step on my journey of self-acceptance. Many men like me struggle to find this, but here was the proof that it was possible.

Autistic and/or asexual people get a rough deal when it comes to dating, but it is more than possible for us to find a partner, should we want one. Autistic people especially are drawn to each other, and when we meet, we understand each other to a depth that is difficult to describe to the layperson.

Don’t give up. I was ready to, and then I found the right person. Unfortunately, even neurotypicals have to wade through a sea of crap before finding the right person. While this problem may be amplified for those of us on one or more spectrums, it is not an impossible problem.

Two identities: The problem common to both autism and asexuality

Both autism and asexuality are identities that are often misunderstood by the general public. Myths abound about both of them, some more harmful than others. There is however one myth in particular that is common to both.

This is the myth that both autism and asexuality are products of some kind of damaging/traumatic event.

For years, the antivax crowd has spread the narrative that autism is caused by damage as a result of vaccination. This has led to a great deal more conspiracy theories surrounding the so called “causes” of autism, ranging from the claim that 5G causes autism through to the wonderfully outrageous concept that Peppa Pig causes autism.

This of course has spawned a plethora of quack treatments such as MMS (chlorine dioxide bleach) abuse and chelation therapy. Quacks regularly use these abusive treatments to “cure” autistics, instead causing a great deal of harm.

You can understand, then, why it concerned me to learn of some of the rhetoric that is regularly turned on the asexual community.

Many have been accused of only being asexual because of sexual trauma, or mental illness. Many have been told it needs to be fixed or cured.

Having seen how out of hand this has become in the autism treatment industry, it terrifies me to think that my fellow asexuals may also be subject to things like behavioural therapies and other quack cures.

The harm that has been done to the autistic community is immense. We need to dispel these myths before it happens to another community.

Asexuality is not a lifestyle choice. It is not the result of trauma, or mental illness. Asexuality is a sexual orientation, an identity. It is who we are, and it is valid. We do not need a cure or to be fixed.

This Autistic will not stand by while another community is harmed the way that so many of us in the autistic community already have been.

I am proud to be both autistic and asexual.

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