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Sep 18 2023
Creating Autistic Suffering: Interoceptive stimming or “challenging behaviour”?

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

TW: Discusses Challenging Behaviour, Disordered Eating, Sex and Related Activities, Self-Injury, and Victimisation

Recently David posted an infographic about interoceptive stimming. This proved to be a very popular topic and we felt it necessary to expand on this more via this series. In our experience working directly with Autistic individuals experiencing various levels of distress and crisis, what is often conceptualised as “behavioural” can be attributed to interoceptive self-stimulation.

What is interoception?

Interoception is the sense that tells us what is happening internally in our body. It allows us to identify our emotional and physical needs through the sensations we derive from them.

“So how exactly does interoception do its important job? This sense is hard at work all of the time, monitoring your entire body—body parts like your heart, lungs, stomach, bladder, muscles, skin, and even your eyeballs—and collecting information about how these body parts feel. For example, interoception collects information which helps your brain identify how your stomach feels: does it feel empty, full, gassy, nauseous, tingly or something else?
Your brain uses the information about the way your body feels as clues to your current emotion(s): are you hungry, nervous, tired, sick, excited and so forth?
Thus, at the most basic level, interoception can be defined as the sense that allows us to answer the question, “How do I Feel?” in any given moment….

…interoception is the very foundation of independent self-regulation.”

Mahler, (Accessed September 2023)

What is Alexithymia?

Alexithymia is the difficulty or inability to identify or “sense” one’s emotions. This then makes it difficult to articulate your emotional experience (Gray-Hammond, 2023). It could be thought of as a subgroup of interoception; emotions after all are an internal experience. Alexithymia occurs in around 50% of the Autistic population (Kinnaird et al, 2019).

What is stimming?

Also known as self-stimulatory behaviour, stimming is a repeated action that stimulates a particular sense, Autistic people may do this because the sense is under-stimulated, they may also do this because the sensory input is soothing and helps to keep them regulated. Hand flapping is probably the most commonly referenced, but it can include things like echolalia, listening to the same song on repeat, or spinning, etc. It can be self-injurious behaviour such as skin picking and head banging. Stimming is any repetitive behaviour that self-stimulates a particular sense.

Interoceptive stimming

Just in the same way that an autistic person may make repetitive movements or make repetitive sounds, it stands to reason that we may also engage in interoceptive stimming.

“repetitive, stimming behaviours, such as hand flapping and body rocking, are self-soothing and help to regulate the autonomic nervous system, which in turn generates interoceptive signals.”

Reframing Autism, 2022

What can interoceptive stimming help us understand?

Challenging Behaviour

Challenging behaviour are words that are commonly used to describe behaviour that is considered culturally unacceptable, societally abnormal, inconvenient, costly, or harmful and dangerous (Bromley & Emerson, 1995). Suppose that an Autistic person can not access or feel their emotions, much like when our proprioceptive sense is under-stimulated, we would seek proprioceptive input. We can also seek “emotional input”. Sometimes this can look like watching sad movies, or adrenaline seeking. However, sometimes it can appear as starting arguments or seeking to be dysregulated. This is often conceptualised as “challenging behaviour”.

Disordered Eating

“…there is a robust body of literature illustrating that alexithymia levels, both from a continuous and a categorical perspective, are elevated in individuals with eating disorders compared to healthy controls. Furthermore, individuals with eating disorders have specific deficits in identifying and communicating emotions.”

Nowakowski et al, 2013

Hunger is an internal sensation. Therefore, the feeling of hunger can be a form of interoceptive self-stimulation. Coupled with other sensory differences such as texture and smell aversion, this could look incredibly similar to disordered eating.

“…in the absence of accurate interoceptive representations, one’s model of self is predominantly exteroceptive.”

Filippetti & Tsakiris (2017)

What this means is that those with under-sensitive interoception will create their sense of self, and self-beliefs from external happenings, i.e. autism + environment = outcome. This is referred to as being suggestible or suggestibility. The way that neurotypical disordered eating is commonly addressed is as issues surrounding body-image. In Autistic people that are highly suggestible due to under-sensitive interoception, neuronormative ideas around the origins of disordered eating can create a self-fulfilling prophecy of body image issues when in fact, building the interoceptive sense may serve to be a more effective intervention; it may also avoid people internalising neuronormative self-beliefs that are not accurate.

Hypersexuality

Hypersexuality can also be a form of interoceptive stimming. Sex, masturbation, and related activities can serve as a vehicle for stimulating the interoceptive sense. Granted, many Autistic people have other sensory needs that makes engaging in intimate acts difficult. However, the other side of the sensory coin can be found in Autistic people who use sex and related activities to stimulate the senses and would traditionally be framed as being “hypersexual”. Coupled with suggestibility and social differences, and the rates of vicitmisation of Autistic people (Pearson et al, 2023), we can see why this can and does create a very big problem.

In conclusion

The above examples are just a snapshot of how understanding interoception can help us understand our Autistic selves and our Autistic loved ones. We must remember that for every Autistic person who is hyposensitive to interoceptive input, there are probably just as many who are hypersensitive. We can both seek and avoid interoceptive input. Sensory experience can also be dynamic dependent on our regulation levels and environment. What we seek on one day, we may avoid the next. By being aware of interoceptive stimming, we can be more aware of the need to find alternative routes to meeting interoceptive needs.

References

Bromley, J., & Emerson, E. (1995). Beliefs and emotional reactions of care staff working with people with challenging behaviour. Journal of Intellectual Disability Research, 39(4), 341-352.

Filippetti, M. L., & Tsakiris, M. (2017). Heartfelt embodiment: Changes in body-ownership and self-identification produce distinct changes in interoceptive accuracy. Cognition, 159, 1-10.

Gray-Hammond, D. (2023) What is alexiathymia? Emergent Divergence

Kinnaird, E., Stewart, C., & Tchanturia, K. (2019). Investigating alexithymia in autism: A systematic review and meta-analysis. European Psychiatry, 55, 80-89.

Mahler, K. (2023) What is interoception? kelly-mahler.com

Nowakowski, M. E., McFarlane, T., & Cassin, S. (2013). Alexithymia and eating disorders: a critical review of the literature. Journal of eating disorders, 1, 1-14.

Pearson, A., Rose, K., & Rees, J. (2023). ‘I felt like I deserved it because I was autistic’: Understanding the impact of interpersonal victimisation in the lives of autistic people. Autism, 27(2), 500-511.

Reframing Autism (2022) Dissociation in How Core Autism Features Relate to Interoceptive Dimensions: Evidence from Cardiac Awareness in Children – A Summary for Non-Academics. reframingautism.org.au

David Gray-Hammond 1 Comments
Jun 18 2023
Today is Autistic Pride Day: Let’s celebrate our diversity

I have been active in the Autistic community for some years now. I have come to realise that autism as a diagnosis has been somewhat of a failed experiment. Diagnostic models have failed to capture the intricacies of what they dub “autism spectrum disorder”. A lot of the issues with the diagnostic process itself come back to racial and socioeconomic bias in research literature; there are also significant issues with people gendering autism, creating exclusion by denial of gender and sexually diverse experiences.

The Autistic community is diverse. While autism itself is an abstract concept, the very real Autistic people that exist come from all parts of the tapestry of life. One might hope that the days of autism being a diagnosis of middle-class white males is coming to an end, but there is still significant disparity. This article highlights the significant gulf in diagnostic rates in the US alone. It is clear that BIPOC people are being ignored despite the countless voices from their communities speaking up.

I also recently wrote about queerness and being Autistic. Gender diversity and sexualities that do not fit into perceived heteronormativity account for a great deal of the Autistic community. Again, these groups may have a harder time getting a diagnosis due to ideas that position autism as something that is only observed between cis-gendered males. It is clear that if you don’t fit the historical research, diagnosticians will deny you exist.

But you do exist, like all of us. You have the same strengths and struggles, plus other struggles that I can not know as a person with the privileges I have.

When we speak of Autistic pride, I think many view it as cute little get togethers, spending time amongst our own people. That’s not entirely wrong, but Autistic pride, much like any pride, is so much more than celebrating. We are protesting. We are refusing to be ashamed, and what we need to stand against moving forward is the bigoted gatekeeping of the few who believe that multiply marginalised communities should be targeted and minimised.

Autistic pride requires us to root out the bigotry in not just wider society but also our own community. If there is even one person who can not celebrate their Autistic pride, then none of us can. Autistic people are a diverse people, and our fight will not succeed if we are not also fighting for our neurokin who exist at the intersections.

So today, and for all days to come. If someone asks you what Autistic pride is; tell them it is our fight to make sure the world has a place for all Autistic people, not just the select few who fit into the world normative standards. Let’s build a world together where intersectional communities can feel safe to express their experiences without fear of backlash or risk to wellbeing and life.

There is no Autistic liberation while any one of us is being oppressed.

David Gray-Hammond 7 Comments
Jun 14 2023
The link between autism and Queerness

The other day I live recorded a podcast episode about neurodivergence and queerness. In it, we discussed the fact that Autistic and otherwise neurodivergent people are more likely to be Queer/2SLGBTQIA+. The discussion was very good, and we really got into some of our experiences.

It’s no secret that Queerness is a significant intersection with Autistic experience. Aside from anecdotes from within the community, studies such as Janssen et al (2016) and Strang et al (2020) indicate that not only are we more likely to be gender-diverse, but that Queer communities are more likely to contain Autistic people. Strang on particular speaks of the lack of research looking into experiences over the lifespan and the need for such longitudinal study to be carried out.

With so much Queerness in the Autistic community, one might wonder why this intersection is so significant. I think the answer is quite simple. Albeit somewhat theory heavy.

Neuronormativity.

Neuronormativity is pervasive, and if you think that it only effects neurodivergent people you are wrong. Both BIPOC and 2SLGBTQIA+ communities have fallen foul of the belief that there is a standard of neurology we should all achieve. It was not so long ago that being gay or transgender was listed in the DSM as a psychiatric disorder.

Autistic people naturally queer neuronormative standards. In this sense, queer is a verb. It is the subversion of societal expectation. Through our rejection of neuronormativity, we create space to explore our gender and sexuality (or lack thereof) unencumbered by the chains of bigoted standards of being.

When we begin to dismantle neuronormativity, we also begin to dismantle heteronormativity. Our experience of ourselves and attraction (or lack of attraction) to others is built upon the experiences we have of our environment. Experiences that we have through the lens of being Autistic. You can not separate autism from our queerness any more than you can separate a person from their brain. They are part of us, and without them, we would be someone different.

Thus, to neuroqueer in society is to become more than just neurologically queer, but also queer with respect to gender and sexuality.

With this said, there is still bigotry in the Autistic community. There are those who weaponise our intersectionality against us, and wield it as a tool to invalidate and oppress us; and yes, there are oppressive attitudes within our own community.

We must continue to build a community that is loving and accepting of all of the diversity within Autistic experience and recognise that Autistic people all experience the world in their own unique way.

David Gray-Hammond 16 Comments
Jun 2 2023
The relationship between queerness and being Autistic

“Queer is a term used by those wanting to reject specific labels of romantic orientation, sexual orientation and/or gender identity. It can also be a way of rejecting the perceived norms of the LGBT community (racism, sizeism, ableism etc). Although some LGBT people view the word as a slur, it was reclaimed in the late 80s by the queer community who have embraced it.”

stonewall.org.uk

I am queer, and I am also Autistic. In fact, it would be more accurate to say that I’m queer and multiply neurodivergent; I am not just Autistic, but also ADHD and Schizophrenic. Some might wrongly assume I should keep my queerness out of discussions of neurodivergence, but the two are inextricably linked.

As an Autistic person, I find myself constantly questioning the status quo. Even before the discovery of my neurodivergence, the concept of normality felt painful and alien to me. I used to believe that normality (perhaps more accurately, normativity) consisted of arbitrary rules, but I realise now they are not arbitrary at all.

Normativity is designed to oppress those who do not comfortably fit into it. For Autistic and otherwise neurodivergent people, we struggle to fit into the system because of our neurology. For queer people, we do not fit into the capitalist fairy tale of binary gender and monogamy within the confines of heterosexuality. This is neuronormativty and heteronormativity respectively.

The relationship between the two lies in my abject rejection of normativity. I have neuroqueered myself into a fluid and radical identity that stands opposed to what colonial society wants me to be. This is more than just “acting Autistic”. I embrace queerness in all aspects of my life, sexuality included.

Queerness in this respect is not solely about who you are or who you sleep with. For me, my queerness is an act of defiance, a refusal to be contained. Being queer leaves me the space to be whomever I wish, to explore avenues that society would rather cordon off from me.

If I were not Autistic, perhaps if my particular mix of neurodivergence were different, I would not have this drive to liberate myself from the cult of normality. We were sold the lie of essentialist identities, and my bodymind is painfully aware of its dishonesty. I am queer because the world does not want me to be queer.

To be contained into fixed and sanctioned identities is to entangle the Self in the chains of normativity. Queerness, then, is the angle grinder cutting through those chains. I am openly queer so that it may be safer for others to be queer. My pride is not egotistical, but a refusal to be ashamed of any part of my being.

I reject normativity in all kinds, including the identity politics of my perceived peer groups. None of this would happen if I were not Autistic.

David Gray-Hammond 0 Comments
Mar 23 2023
Autistic people should not have to educate their therapist

I have had extensive therapy, as one might expect for a recovering drug addict who is also Schizophrenic. I have had mindfulness therapy, Acceptance and Commitment Therapy. I’ve had Cognitive Behavioural Therapy, trauma therapy, psychoanalytic therapy. I’ve also had courses of therapy that use mixed approaches. Thanks to the NHS here in the UK, I have recieved all this for free. The problem is that while free, it was time limited.

Here is why that has been a problem for me as an Autistic person.

So often, therapists have said that they are able to work with my admittedly rather complicated profile of experiences. In particular, they will often claim that they have experience working with Autistic clients. The problem is that fundamentally, they don’t have a clue. This has left me with a difficult decision; educate the therapist or endure hours of inappropriate therapy.

People don’t come to therapy because they are in a good place. In the UK, a lot of therapy is gatekept behind “thresholds” of distress. Most (if not all) NHS trusts currently operate on a framework of crisis-driven intervention, which means that a person has to be in crisis before they receive support. Why then are we expecting Autistic people to waste their spoons and therapy sessions teaching a therapist what life is like as an Autistic person?

When we approach a therapy session, we come with the expectation that the therapist is the expert. Being faced with a professional who has little knowledge outside of awareness courses and mandatory training not only places the onus on the Autistic person to educate them; it undermines our confidence in the effectiveness of therapy. Having a level of confidence that therapy can work is vitally important to the process.

Therapists who do not understand Autistic experience will often employ behavioural strategies and infer thought patterns that are overtly incorrect. This can leave Autistic people feeling like therapy is more of an exercise in gaslighting than something there to help them. When faced with this, Autistic people will often feel forced to explain Autistic experience to their therapist. This means that time is wasted, and the process itself can often be intensely triggering, making any crisis worse.

This is why therapists need to spend time engaging with the communities that they work with in not only a professional context but also in the context of being the learner to willing educators. It is not okay for therapists to expect free labour from those in crisis.

This is perhaps one of the biggest accessibility issues in the world of therapy. Until such time that it is resolved, Autistic people are going to be left out in the cold during their time of greatest need.

David Gray-Hammond 1 Comments
Feb 14 2023
The infantilisation of Autistic people and the future of our blossoming culture

I would be lying if I said I was not somewhat inspired by the fact that it is Valentine’s day today. It’s a day that gets mixed responses from the Autistic community. Relationships are often a touchy subject for us. We live in a world that fights hard to keep us at the fringes. This, of course, led me to a talking point that has been considered time and again. Autistic people are not perpetual children. We do become Autistic adults, and we engage in adult relationships. You might think that this is all that needs to be said, but actually, there is a deeper conversation to be had about the infantilisation of our community and how this impacts our growing culture.

Wider society views us as “less than”. This is not a debatable point. It’s a fact. When you consider the history of autism and neurodiversity as a whole; we have been relegated to a lower rung of the social ladder than those who can successfully perform neurotypicality. We are treated as though we are child-like, and at times as though we aren’t even human. I have genuinely heard people say that having sex with an Autistic adult should be criminalised. It is assumed that we lack the capacity to make those sorts of choices for ourselves.

Let me pause their for a minute. Yes, it is true that there are Autistic people who lack the capacity to make decisions around romantic and sexual partners. There are Autistic people who are very vulnerable, whom predators wait to take advantage of. I do not want to take away from this. What I want to highlight is that Autistic people, in general, are more than capable of deciding they want to engage in an adult relationship or sex.

So now, we are left with this uncomfortable fact; we are seen as perpetual children. What purpose does it actually serve for those in power and privilege to allow the perpetuation of an idea that is so incredibly incorrect and harmful?

Autistic people are finding new ways to connect and organise. This has resulted in us having our own dialect, forms of socialisation, social rules, and collective hopes and dreams for the future. The growth of the online neurodiversity movement has empowered Autistic people beyond the point of activism. At this point, we are an emerging counter-culture. This is an important distinction to make.

By centring our existence as an identity and culture, we are disempowering medical and diagnostic models of neurodiversity. Normative systems have relied on the framing of autism as a condition of asociality and a lack of meaningful personhood. If we are emerging as a culture, clearly, we are more than a tick box exercise that can be used to fuel a captialist medical industrial complex. The claim that we lack sociality and personhood is fundamentally dismantled when we show the world that we are capable of not just building a culture but building one that diametrically opposes existing oppressive structures.

The quickest way to conquer your cognitive dissonance in this scenario is to assume we are incompetent. This incompetence comes on the form of infantilisation, which itself is rooted in childism and the assumption that all child-like people lack full personhood.

This is why, for the sake of our communities future, we need to crush infantilisation. We need to demonstrate not just our personhood but the reality of Autistic adulthood. We need to build the taboo nature of adult pursuits into our culture. This has been all-the-more important to me in my work with Autistic drug users. So many times have I seen Autistic people denied support because “Autistic people don’t use drugs”. Infantilisation is more insidious than invalidation of out culture, it is life-threatening.

If we want to move into a future where being Autistic can be more than an identity in a hidden counter-culture, we need to start by disproving the idea that we lack competence. We need to take a stand and demonstrate that we will not tolerate being treated as children.

David Gray-Hammond 1 Comments
Dec 17 2022
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.

David Gray-Hammond 0 Comments
Oct 2 2021
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).

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David Gray-Hammond 1 Comments
Feb 28 2021
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.

David Gray-Hammond 0 Comments
Jan 17 2021
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.

David Gray-Hammond 0 Comments
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