Hello and welcome to Emergent Divergence, my name is David Gray-Hammond. In this blog I will be discussing autism and autistic rights, addiction and substance misuse, and mental health (and the intersection at which they overlap). I myself am autistic with co-occuring OCD, psychotic experiences and complex trauma, i am also in recovery from drug and alcohol addiction.
The goal of understanding and acceptance of these issues is a journey that i hope you will join me on as i seek to delve into the viewpoints of those who hold them close to their hearts. I look to advocate on the behalf of those whose voices may not necessarily be heard.
I hope that you find this blog informative and thought provoking.
We’ve seen it happen countless times in recent years. A person from a marginalised demographic (usually BIPOC, disabled, or a combination of the two) is murdered by a figure of authority.
Usually the police, a teacher, or carer. They take lives with impunity.
The Internet is rightly outraged. Protests and riots occur. Online campaigns are started. Just like that, a persons identity is reduced to a hashtag.
This isn’t the fault of the outraged, the victimised, the disheartened. This is the fault of the perpetrator. Hashtag campaigns have shone lights into places that are often ignored. But still, the marginalised live in fear.
Fear of being killed.
Fear of being erased.
Fear of becoming another twitter trend.
No human being should have to live like this. Every human being has a fundamental right to life. In fact we have 30 human rights. I can’t name them all, no one ever taught them to me. It’s fundamentally wrong.
Marginalised groups are treated as disposable in a system that values eurocentric, able, capitalistic humans over all else. For me as a disabled person, I live every day acutely aware of societies disdain for me. Every part of the system is built in a way that says “you are not welcome here”.
I have a level of privilege thanks to my skin colour. I still face risks as a disabled person. I would hope that my chances of becoming a hashtag are reduced, but they are still more than my non-disabled peers.
When an entire life can be reduced to a hashtag, something is very wrong. We are all born with potential, more potential than capitalist society would have you believe. That potential can so easily be snuffed out and become just a name on the internet.
We need to dismantle not just the prejudice in the system, but the prejudice in ourselves that holds up a system that discriminates by design. Each of us harbours prejudice. To fix society, we first have to fix ourselves.
People complain about world governments like they are the sole perpetrators of a broken system. The system isn’t broken, it was built that way.
All the time that system exists, no government in the world will fix this situation.
This article was co-authored between David Gray-Hammond and Tanya Adkin
Trigger Warning: This article contains discussion and examples of ableism and discrimination against Autistic and disabled people. Mentions the R-Slur.
When you’re first confronted with the word “ableism”, it seems a bit abstract and unreal. This is because it is so ingrained into our society and psyche that it has become a normalised and accepted part of every day life. Regardless of your position and privilege (or lack thereof). Unfortunately, for countless disabled people, ableism represents a very real threat to not only their daily lives, but their right to exist. It massively contributes to poor self-worth and self-esteem, even ones own understanding of self, which for Autistic people (who may already be coming at it from a disadvantaged position) is exceptionally dangerous.
We can’t talk about ableism without talking about masking. It could be argued that masking occurs primarily because of ableism, in fact, it seems to be the rather obvious conclusion. We know that masking is a response to Autistic people not feeling safe to express their true selves. Why is that? Surely, if there were no ableist attitudes towards our expression of self, then we wouldn’t need to spend so much energy hiding it, often at great cost to our wellbeing.
Ableist attitudes are literally prescribing masks for neurodivergent people. Especially those of us who do not have access to community.
“Masking is an unsurprising response to the deficit narrative and accompanying stigma that has developed around autism”
Pearson A. & Rose, K. (2021)
Ableist attitudes feed directly into something known as ‘minority stress’. Minority stress is a phenomenon where minority groups experience increased adverse life events in a society that oppresses them by design. Due to ableism being inherent in our society, all of the infrastructure and supports in place actually add to the burden of minority stress.
“Minority stress theory hypothesises that the decreased social standing of stigmatised groups leads to increased exposure to stressful life events, while simultaneously being afforded fewer coping resources with which to handle these events”
Meyer, I.H. (2003)
So what exactly is ableism?
Ableism is discrimination and prejudice against a person, or group of people, that are disabled. It can take many forms, from the person who complains that disabled people get a “free ride” through to it’s scarier presentations such as violent hate crime.
Ableism is the systemic attitude that disabled people have less value than non-disabled people. This has close ties to capitalism, a lot of the way humans are valued is on their economic worth or “intelligence”. In a world where every one has a monetary value, it is easy to see why disabled people are wrongly considered less under this system.
Ableism has been trained into us from a young age, how many of us used the r-slur as an insult without even knowing the full ramifications of how this word scaffolds the systemic ableism that our current system relies on.
“Bringing home the bacon”
“What do you bring to the table”
When having time off of work, sick, is frowned upon or considered lazy, we begin to see why this system is not fit for purpose with regards to disabled people. These attitudes are taught to us from the moment we commence education. Schools that give out attendance rewards, and punish children and families that struggle to engage, usually because of unmet needs or disability.
As children we are sent home with mountains of homework, a not so subtle reminder that in the adult world, you cannot escape work, even in the privacy of your own home. Unpaid labour is lauded as “dedication” and “good work ethic”. These unconscious attitudes place us into a prison of ableism, where we have the keys, but are not taught how to use them.
Considering this, it is easy to see where internalised ableism comes from for so many of us.
“Internalised ableism is the absorption of negative beliefs about a particular disability and an attempt to distance oneself from that ‘spoiled identity’”
Woods, R. (2017)
Too many of us live our lives believing there is something wrong with us, valuing our lives by our ability to work. Western culture especially has taught us that we need to have a fixed purpose, when in fact, we are missing the beauty in our own existence.
That’s the problem, when we can’t see our own beauty, we try to hide who we are.
Simply put, living in a world where society actively discriminates (sometimes unconsciously) against your authentic expression of self, or places a higher value on our abled peers, naturally leads to internalised negative self-view. Even self-hate in some cases.
There are various laws and acts that are intended to protect us. One such act is the Equality Act, which covers various “types” of disability discrimination.
Disability discrimination, as defined by the Equality Act 2010, falls into six different categories:
Direct discrimination Indirect discrimination Failure to make reasonable adjustments Discrimination arising from disability Harassment Victimisation
While we may be legally protected against some forms of ableism, we have to ask ourselves, honestly, how accessible and practical is it to enforce this?
The truth is that justice isn’t really justice. To utilise these protective laws, you have to be coming from a place of considerable privilege. Justice can be expensive, spoons heavy, and convoluted to action. Which in itself is ironic, given that these laws may be inaccessible to the very people who they are supposed to protect.
Ask any parent who has ever tried to acquire an EHCP for their child.
As with many laws, acts, and processes, designed to either aid or protect the most vulnerable. They are like fables with no moral at the end of the story, they are ultimately performative, intended to silence the rabble-rousers, and the people crying out for fair treatment. There are no winners here.
It does paint a pretty grim picture, however things are happening slowly. Progress does not come all at once, but rather in the many droplets that form an ocean. The internet means that Autistic and otherwise disabled people have been able to form communities, breaking down barriers and organising for their right to exist. The gap between parents, professionals, and disabled people is narrowing.
Anyone can publish a blog about their own lived experience. Just like we are doing here.
The social model of disability and the neurodiversity movement are gaining traction and popularity.
We still have quite some distance to move forward, but bit by bit we are chipping away at the stones of ableism that have been shackled to us since birth. Most importantly, the ableism we feel towards ourselves is washing away. Giving rise to a community that is showing on a daily basis, it’s growth and self-advocacy. A community that is proud of who they are.
We are proud to be a part of that community.
We need to decide how history will remember us.
100 years from now, we intend to be on the right side of history. Standing with all our neurokin. Understanding, accepting, and celebrating peoples differences, and the rich cultures that they lead to, rather than labelling anything that dares deviate from the norm as a deficit.
Equality Act (2010) United Kingdom Government
Meyer, I.H. (2003). Prejudice, social stress, and mental health in lesbian, gay and bisexual populations: Conceptual issues and research evidence. Psychological Bulletin, 129, 674-697. doi:10.1037/0033-2909.129.5.674
Pearson, A., & Rose, K. (2021). A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism in Adulthood, 3(1), 52-60.
Woods, R. (2017). Exploring how the social model of disability can be re-invigorated for autism: in response to Jonathan Levitt. Disability & society, 32(7), 1090-1095.
Edit to add disclaimer: Despite Simon Baron-Cohen telling us that there will be a police presence, A member of the protest team has since spoken to Cambridge Police and confirmed that no police presence is booked for the protest, although they may now send one or two officers to make sure everything is alright. In our opinion, Baron-Cohen told this lie in a direct attempt to try and stop the protest from happening. Please do still read the article as we believe this lie makes the content even more important.
This article was co-written by members of the Boycott Spectrum 10k team; David Gray-Hammond, Tanya Adkin and Bobbi Elman
Trigger warning: This article contains discussion of violence by law enforcement professionals, and discussion of systemic trauma caused by the criminal justice system.
Anyone who has followed the Boycott Spectrum 10k campaign will be aware that we are holding a peaceful protest outside the Autism Research Centre on the 29th October 2021, in Cambridge. This is the workplace of Simon Baron-Cohen, and the main research centre where the Spectrum 10k study will be housed. For more information on why we are protesting, please see our collective joint statement here, and another article discussing the study here.
Since it has now been confirmed by Simon Baron-Cohen that they have opted for a police presence on the day of the protest, we felt it necessary to have a discussion about why this is problematic, and the recent stories of police brutality against Autistic people. This is not to say that people will be at risk at the protest, this is a peaceful protest, and the whole event will be livestreamed, but police brutality is a very real issue that we feel someone like Simon Baron-Cohen should be, and probably is, aware of.
In fact, he said it himself.
We all know the stories from America. Police brutality is well documented in the States.
Unfortunately, due to the extreme nature of the violence and discrimination against minority groups in the US, and the voyeuristic nature of the UK media, what is happening on our own soil often goes unreported. One might understand this, when you consider that police in the US are literally killing innocent minorities. However, police brutality still exists in the UK, and Autistic and otherwise disabled people have often been on the receiving end.
“At least we’re not being shot”
This is a response often heard from people speaking from a place of privilege. It is also a response from those of us who have been so gaslit and bullied that we are willing to accept a certain level of mistreatment as normal, and be grateful for it. For example, Autistic children in mainstream schools are always “coping”. It’s considered acceptable to be treading water, despite the fact that one day we will run out of stamina and begin to drown.
In fact, our children are often victims of police brutality, in the very schools that claim to keep them safe.
Said police officer threatened to kick the boy, and dragged him along the ground, before turning to another child and saying “you’re next”. This didn’t happen in the US, this happened in Merseyside, UK. And the courts? After convicting the police officer of assault, merely fined him.
“The IOPC said PC Kemp attempted to handcuff the teenager, but when this was unsuccessful, he used CS spray less than a metre from her face. “Within seconds he started using his baton and then struck her several times,” it said.”
The stories above are just three very recent examples of police brutality against DISABLED CHILDREN. These are the ones that are privleged enough to have formal recognition of their neurodivergence. These are the ones who were lucky enough not to be institutionalised. What about the people labelled as “naughty”, “aggressive”, “feral”, “defiant”. What about those mislabelled mentally ill? If we are left unrecognised (read more here) and with these labels for long enough, we can develop mental health conditions. It’s inevitable, you can read more about this here.
What about those at the intersection of multiple marginalisation?
It’s well known that Autistic people are more likely to be gender non-conforming, there is a significant overlap between the Autistic community and the LGBTQIA+ community. It’s also known that very few of us fit the white, male, cis, heterosexual, middle class stereotype that the DSM-V criteria are based on, and what has been perceived as accepted for decades. In fact there are three of us writing this article right now and we can’t think of one Autistic person between us that fits this stereotype. Contrary to popular belief we have very wide reach and pretty busy Autistic social lives.
There are multiply disabled Autistics, non-speaking Autistics, Autistic people practicing a wide range of religions, or no religion at all. Like every human, we are everywhere, just like everyone else, we just have a different neurology to those with the dominant neurotype.
When we consider the different intersections in the Autistic community, there is one very significant intersection that we need to talk about with regard to police brutality. We need to consider how this impacts Autistic people of colour. It is widely publicised, the insidious prejudice ingrained into the world institutions and society itself.
Existing on this intersection places Autistic people of colour firmly near the top of the list when it comes to risk of police brutality.
“The police need to know that a Black person stopped by them for whatever reason, already has it in their head that they may not make it out from this stop alive. So nervousness, lack of eye contact, not reading body language and facial expression and all the other signs of what could be a condition like autism, could simply be a neurotypical person’s terror that they may never see their family again. Now imagine that same scenario in the head of someone who already has communication difficulties? Devastating.”
Of course, police brutality doesn’t always look like physical violence. Sometimes it is the systemic violence that unfairly incarcerates Black Autistic individuals. This was made obvious by the case of Osime Brown, A Black Autistic teenager, unfairly convicted and jailed, for a crime he didn’t commit, under the discriminatory joint enterprise law. Not only was he imprisoned, he was scheduled for deportation. It took a great deal of campaigning and protesting to have Osime freed and his deportation cancelled.
“Black people statistically struggle to gain access to assessments let alone diagnosis. Instead of getting the academic and social support he needed then, Osime, like many of us, was wrongly seen by his teachers as troublesome, stubborn and stand offish. Covering his ears due to sensory overwhelm was seen as rudeness. Meltdowns due to sheer frustration at not being able to communicate his needs was seen as bad behaviour…
…As a society we need to unlearn our biases, and develop better ways to support Black and neurodivergent people.”
Finally, let us consider the research surrounding Autistic people and their experiences with the police.
Research tells us that natural Autistic expressions of self increase the likelihood of a person encountering the criminal justice system at some point in their life (Tint et al; 2017).
Research also tells us that Simon Baron-Cohen has been espousing harmful views regarding Autistic people and criminality since at least the 1980’s, claiming that Autism is a risk factor for violent crime and terrorism (Baron-Cohen, S; 1988). perhaps now it is easy to see why he feels it necessary to intimidate us with systemic aggression. This is a man who has believed that our existence is dangerous for decades.
Simon Baron-Cohen knows exactly what he is doing by inviting the police to a peaceful protest, led by Autistic people (whom he professes to serve the interests of?) trying to defend their right to exist. He is hellbent on perpetuating the myth that we are violent, dysfunctional criminals. This is dehumanising. Autistic people are most likely to be victims (for a wider discussion of this, see Aucademy’s video here), not perpetrators.
Not only is this evidence of Baron-Cohens disdain for Autistic people, but also a prime example of his privilege. He’s so far removed from the daily lived experience of his “research subjects” that he genuinely thinks this is an appropriate response, does he read any research beyond his own self-serving and incredibly biased theories, that Autistic people disprove by merely existing?
This is all-the-more reason to attend this protest, we need to show in voice and number that we will not stand for the discrimination and prejudice that so called “autism researchers” continue to pour upon us, infecting every aspect of our daily lives.
Simon, just because you keep repeating something doesn’t make it true.
Boycott Spectrum 10k Team
For more information on the protest, please see the event listing on Facebook here.
Tanya Adkin (she/her)
As a late identified Autistic/ADHD adult, a parent to two children with multiple neurodivergence, and a professional working within the voluntary sector from a young age, I have unique insight from all perspectives
I have worked within the voluntary sector, starting within the disabled children’s service, progressing on to mental health, healthcare funding, youth services, domestic abuse, and much more.
For the last six years, I have developed a specific interest both personally and professionally in special educational needs and disabilities, particularly around neurodivergence and the challenges faced by families when trying to access support.
I am dedicating to educating in neurodivergent experience in order to help families thrive by providing insight, reframing, and perspective in an accessible and personable way
My work includes specialist consultation and direct work with Autistic CYP and their families that others describe as “complex” and “difficult to engage”, ranging from those experiencing psychosis, addiction to high risk Children Vulnerable to Exploitation, County lines and Sexual exploitation.
I work as a specialist alongside social workers ranging from assessing capacity, neurodivergent parenting, disabled children and child protection.
Bobbi Elman (she/her)
Bobbi is an Autistic mother of two Neurodivergent young adults. Bobbi and her children all have hypermobile EDS with many of the conditions that accompany it, like PoTS. High anxiety (exposure anxiety). Bobbi is a University of Birmingham graduate with a degree in SEN children Autism and has worked specifically with Autistic children/young people for over 19 years and believe in low arousal, child/person-centred approach. Bobbi has over eight years of experience working as a high-level specialised Autism one-to-one TA and experience working on a LA Autism Advisory team, which included key work.
Bobbi does not support ABA/PBS. (Applied Behaviour Analysis and Positive Behaviour Support).Bobbi continues to deliver training to staff and school, and will happily deliver training toanyone who works with or has contact with an Autistic child or adult on the Autistic experience. Bobbi is available for consultancy, advocacy, and training.
Aucademy (2021) Autistic, gender, & sexuality diversity – growing list of resources. aucademy.co.uk
Aucademy (2021) Autistics respond to media reporting of violence & victimisation by neurodivergent people Aug 2021. Aucademy, youtube.com
Baron-Cohen, S. (1988). An assessment of violence in a young man with Asperger’s Syndrome. Journal of Child Psychology and Psychiatry and Allied Disciplines, 29(3), 351–360.
Boycott Spectrum 10k Team (2021) Collective joint statement from Autistic people on Spectrum 10k. Emergent Divergence, emergentdivergence.com
Dalmayne, E. (2020) Fighting police abuse and racism. workersliberty.org
Dalmayne, E. (2020) Deporting An Autistic Black Man Exposes This Government’s Hypocrisy On Racism. Huffington Post, huffingtonpost.co.uk
Fallon, C. (2021) Call for police to get mandatory neurodiversity training after officer assaulted young autistic boy in school. Channel 4
Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic suffering: Failures in identification. Emergent Divergence, emergentdivergence.com
Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic suffering: In the beginning there was trauma. Emergent Divergence, emergentdivergence.com
Powell, J. (2021) Mum slams school as autistic son, 12, handcuffed by police on first day of term. The Mirror
The Guardian (2021) Met police officer dismissed for hitting vulnerable girl ‘more than 30 times’ with baton
Tint, A., Palucka, A. M., Bradley, E., Weiss, J. A., & Lunsky, Y. (2017). Correlates of police involvement among adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(9), 2639-2647.
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.”
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)
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.
This article was co-authored between David Gray-Hammond and Tanya Adkin
Trigger Warning:Some of the research quoted in this article contains person-first language or references to aspergers. While the authors do not agree with the use of such language, we must access the research and statistics available to us.We are also aware that some of the research cites Simon Baron-Cohen, unfortunately it is almost impossible to avoid him when writing this kind of article.There are also detailed discussions of various traumatic experiences including mentions of suicide, addiction, and mental health issues.
This website houses extensive writing on the topic of Autistic people and addiction, poor mental health, and suicidality, but we are yet to answer one very important question; how do autistic people end up suffering? The truth is that it requires falling dominoes of extensive systemic failure and trauma. In this series of articles, we hope to explore some of the reasons behind the development of poor outcomes in the Autistic population. The reasons listed in this article are non-exhaustive, and we would like to highlight that Autistic people are failed repeatedly throughout their lives.
This is alarmingly evident in the suicide rate for Autistic people. In a large-scale clinical study of newly diagnosed adults, 66% self-reported reported that they had experienced suicidal ideation. This is significantly higher than suicide rates among the general population of the UK (17%) and those experiencing psychosis (59%); 35% of those involved in the study had planned or attempted suicide (Cassidy, S. et al; 2014).
Trauma is a significant predictor of poor outcomes in all people, regardless of neurotype. Since the 1900’s research has indicated that there is a strong link between psychological stress in childhood and adult behaviour (Zarse, E. M. et al; 2019). What we can infer from this, is that childhood trauma plays a role in the development of poor mental health and addiction in adults. The question that arises from that statement is; what constitutes trauma for an Autistic person?
There is an consistent theme in the Autistic community that there is no such thing as an untraumatised Autistic. Kieran Rose (2021) has discussed previously how the diagnostic criteria is based on trauma behaviours, rather than Autistic experience. David Gray-Hammond (2020) has also discussed how current diagnostic criteria is based on Autistic people in distress, and as we move towards a world where Autistic people are better supported and accommodated, the criteria will need to change.
There are strong well evidenced links between autism and PTSD, and links between PTSD and addiction, yet for some reason no one seems to connect the dots. There is also significant evidence of a connection between autism and poor mental health and wellbeing, and connections between poor mental health and addiction. Again, no one seems interested in exploring that intersection.
So, what constitutes trauma in Autistic people?
First, we need to consider sensory trauma. Autistic people are subject to sensory trauma on a daily basis, it is not something that can be avoided in todays society, rather we are literally traumatised by living in a neurotypical world (Fulton, R. et al; 2020). Bearing in mind our sensory differences, this is something that is happening to us from birth.
We are experiencing trauma from birth. Some argue that this could possibly be from prior to birth.
We also experience significant sensory invalidation. Think about the number of times a child has said something is too loud, too hot, too busy; the amount of times that has been met with “don’t be silly”, “there’s nothing to be scared of”.
“Society invalidates the Autistic state of being, daily, hourly, minute by minute – every time one of those scenarios, plus a million more occur.”
Autistic people are also at risk of ‘Mate Crime’. Mate crime is a partcular subset of hate crime where vulnerable individuals are targeted by people posing as friends in order to take advantage of and abuse the individual (Pearson, A. and Forster, S.; 2019). Dr. Chloe Farahar and David Gray-Hammond (2021) had a livestream discussion about Autistic people and crime that included discussion of mate crime, the recording can be found here.
“In a 2015 survey, 80% of autistic people reported that they had been taken advantage of by someone they considered to be a friend. This was a colossal leap from the already significant 48% which had been previously recorded and it illustrated a problematic truth: Autistic people make easy targets.”
Unfortunately, mate crime is not just an experience of Autistic adults (Parry, H.; 2015).
A significant concern for Autistic people is bullying. Bullying can happen to anyone, but it is well known that it happens to Autistic people at a much higher rate.
“I really didn’t understand why kids chased me on the playground. All I know is that when they saw me, and they saw me talking to myself and rubbing my hands together and stimming, that I was all of a sudden “marked.””
Physical violence and hateful slurs from peers is a common experience for Autistic people of all ages. Society itself does not cope well with the existence of diversity. It starts young, but only increases in frequency and severity as we grow up, it can turn into things such as financial and sexual exploitation.
Of course, we can not discuss Autistic trauma without reference to behaviourism. For decades, “therapies” such as ABA and PBS have traumatised Autistic people. In fact, in the UK, SEND support is designed around making an Autistic person behave in a neurotypical manner. Considering this, is it any surprise that Autistic people walk away from these experiences with a great deal of trauma (Adkin, T.; 2021). We are literally being taught that who we are is wrong, and that our needs and wants don’t matter.
Often Autistic communication is invalidated because we do not communicate in the same way as non-autistic people. Many of us are non-speaking, communicating through AAC and similar. Many of us also have co-occurring conditions that make spoken communication a challenge. Autistic people communicate differently, we know this because it’s medically defined as a social communication “disorder”. What constitutes a disorder is defined by the medical model of disability and autism research. Difference is always assumed to be less, this is reflected in the systemic ableism and the insistence that different communication is some how less valid.
Many people have thought that they knew me, but see me in light of my mute mouth and wrongly understood that I think and feel nothing. People are too blind to see the person that I am behind my happy smile. I feel that I am loving and kind and also know that I am empathetic and thoughtful, with feelings that can overwhelm my mind and then they cause me to act like an utter fool.
We may not know how to communicate what is happening to us, we may have tried to communicate but it is misunderstood by the people around us, we may have experienced so much communication invalidation that we just stop trying. This can be particularly true of people who do not communicate using mouth words, especially because society has perpetuated a myth that non-speaking means non-thinking. What ever way you look at it, Autistic communication is considered less valid. Often, being Autistic can be used as a reason to cast us out.
All of this means that many Autistic people will isolate themselves from the world, and that isolation starts from a young age. Mazurek, M. O. (2014) stated that greater quantity and quality of friendships were associated with decreased loneliness in Autistic adults. Here’s the problem, Autistic people are in the minority. We do not have access to community as children, especially if we are pushed through a mainstream institution. Even if there are other Autistic people in that class, we do not know what it means to be Autistic.
The double empathy problem tells us that we have better interactions and quality of relationships with other Autistic people as opposed to neurotypicals. Autistic and non-autistic people exist in two different social contexts (Milton, D.; 2012).
“…double empathy problem’ refers to a breach in the ‘natural attitude’ (Garfinkel 1967) that occurs between people of different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning”
Milton, D. (2012)
This disjuncture between Autistic and non-autistic communication can be traumatic for the Autistic person (Milton, D.; 2012).
Finally, we need to talk about restraint and seclusion. There are many different forms of restraint and seclusion, but each one of them teaches us from a young age that we do not have autonomy. It teaches us that our communication is not valid, that when we react to situations that we find overwhelming or distressing, we get punished.
An ABA practitioner physically holding our hands still, is a form of restraint.
But restraint has a darker side. As an example, we might look at the case of Max Benson, a 13 year old Autistic child who died as a result of being restrained for over two hours (Vance, T.; 2019). This isn’t just a problem in the USA though, it is happening in the UK also. A 12 year old Autistic child was restrained and handcuffed by police on his first day of secondary school, he was 5ft tall, and multiple police officers and staff used force to restrain him (Halle, M. and Cardy, P.; 2021). I think it is clear why this is traumatic for Autistic people.
Every school in the UK has a restraint policy. Sold as being for “everyone’s safety” while in fact it remains state sanctioned abuse. We have toddlers being restrained into preschool, into environments that cause them sensory trauma. Parents are told “they’re fine once they’re in” by people who have no understanding of masking. If you’re too big to be physically restrained, they use chemical restraint.
David Gray-Hammond (2020) writes of his experience as an undiagnosed Autistic person in a psychiatric ward. He discusses how, due to being a large man, staff chose to chemically restrain him with a heavy regime of antipsychotics and sedatives, rather than address the issues that were causing him distress.
It’s not just adults that are victims of chemical restraint, children under the age of 10 years old have been prescribed antipsychotic medications because it is cheaper and more convenient than meeting their needs.
Seclusion is a problem because it uses isolation as a form of coercion. Children and adults who do not conform to societies neuronormative ideals are secluded for long periods in isolation, seemingly as a punishment for not being “normal”. It’s inordinately unethical, and yet ethics don’t seem to apply when the victim is neurodivergent.
What does all this lead to?
Truthfully, it leads to suffering. Dr. Nick Walker put it best during her session with Aucademy.
The next piece in this series will explore the systemic failings in identification and lack of accessibility.
As a late identified Autistic/ADHD adult, a parent to two children with multiple neurodivergence, and a professional working within the voluntary sector from a young age, I have unique insight from all perspectives.
I have worked within the voluntary sector, starting within the disabled children’sservice, progressing on to mental health, healthcare funding, youth services, domestic abuse, and much more.
For the last six years, I have developed a specific interest both personally and professionally in special educational needs and disabilities, particularly around neurodivergence and the challenges faced by families when trying to access support.
I am dedicating to educating in neurodivergent experience in order to help families thrive by providing insight, reframing, and perspective in an accessible and personable way.
With experience, passion, and an individualised approach in close collaboration withfamilies, I help them work towards holisticchild and family-centered solution
Adkin, T. (2021) Behaviourism damages Autistic children. tanyaadkin.co.uk
Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry, 1(2), 142-147.
Farahar, C. and Gray-Hammond, D. (2021) Autistic people and crime. Aucademy. YouTube.
Fulton, R., Reardon, E., Kate, R., & Jones, R. (2020). Sensory Trauma: Autism, Sensory Difference and the Daily Experience of Fear. Autism Wellbeing CIC.
Garfinkel, H. (1967). Ethnomethodology. Englewood Cliffs.
Gray-Hammond, D. (2020) Autism and the future of diagnostic criteria. emergentdivergence.com
Gray-Hammond, D. (2020) My experience of restraint in a psychiatric hospital: This is not a love story. International Coalition Against Restraint and Seclusion. NeuroClastic. Neuroclastic.com
Halle, M. and Cardy, P (2021) ‘Overreaction’: Autistic son handcuffed by police on first day of term at Notts academy. Nottingham Post
Hernandez, P. (2021) Who am i? nottootrapped.wordpress.com
Milton, D. E. (2012). On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27(6), 883-887.
Parry, H. (2015). Shocking rise of «mate crime»: How children with autism or Asperger’s are being bullied, abused and robbed by so-called friends.
Pearson, A., & Forster, S. (2019). Lived Experience of Friendship and Mate Crime in Autistic Adults.
Rose, K. (2018) An Autistic Invalidation. theautisticadvocate.com
Sinclair, J. (2020) Autism exploitation: How to spot it and how to make it stop. autisticandunapologetic.com
Vance, T. (2019) #ShineOnMax Community-wide Candlelight Vigil for Max Benson, Sunday November 17. International Coalition Against Restraint and Seclusion. NeuroClastic. Neuroclastic.com
Walker, N., Farahar, C., Thompson, H. (2021) What is neurodiversity & why’s it important? Nick Walker with Chloe & Harry: Aucademy in discussion. Aucademy. YouTube.
Wise, M. (2019) The long term impact of bullying. Neuroclastic. Neuroclastic.com
Zarse, E. M., Neff, M. R., Yoder, R., Hulvershorn, L., Chambers, J. E., & Chambers, R. A. (2019). The adverse childhood experiences questionnaire: two decades of research on childhood trauma as a primary cause of adult mental illness, addiction, and medical diseases. Cogent Medicine, 6(1), 1581447.
For the better part of a century now, addiction has been treated largely as a matter of criminal justice, with some focus on medical treatment. Unfortunately this approach leaves a considerable amount out of the discussion. Addiction is a complex matter, with a lot of it coming down to socio-economic issues. As an Autistic addict, I am keenly aware of the social issues that contributed to my addiction, and that is what I hope to discuss in this post.
Why do people become addicted to things? Scientifically, it is because certain activities provide a reward response in the brain, and essentially this is what people become addicted to. The development of that addiction, in my opinion, tends to be dictated by a set of falling dominoes that create an environment for such a thing to happen.
The first point to consider is this; I have never met an addict who was not struggling with some kind of mental health concern, typically it is trauma related. Okay, honestly? It’s always trauma related (in my experience). So we have to think about the environment that traumatised the individual. We know that certain groups face more challenges when it comes to meeting the needs of themselves and their children.
This is often painted as a moral failing, but truthfully it is a systemic failure on the part of a society that demonises and punishes people for living in poverty, after putting people into poverty in the first place. Even now, in 2021, huge swathes of the population rely on food banks and other social welfare to survive. Could this problem be mitigated by the system? Absolutely. Sadly, the people in charge of that system tend not to do anything about that.
We also have to consider that for Autistic people, they are much more likely to experience violence and bullying at the hands of their peers and family. Continuous mistreatment by peers and family members can create a perfect storm for the development of trauma related mental health concerns, and subsequent dependence on addictive behaviours.
Autistic people live in a social context that forever tells them that who they are is wrong. For me this amounted to wishing that I could exchange my social identity for one that could better assimilate. That new identity was one of a drug user, a person who regularly went out partying, and revelled in the hedonism of the culture he was trying to assimilate into. However, this soon was not enough.
To keep my mental health at bay, I needed access to appropriate treatment for my mental health concerns. Unfortunately, Autistic people have considerably less access to mental health services because of the prevailing belief that mental health issues are “part of the territory” of autism. This is obviously a mistruth, but it is a prevalent belief.
Without access to mental health services, my substance use began to spiral as I sought stronger and stronger relief from my suffering.
This leads neatly into the next part of the social context of addiction; crisis-driven intervention.
Western society in particular, will only intervene and provide support when a person is deep in crisis. For Autistic people this can mean that we are ignored for years, because we don’t present like a neurotypical person when in crisis. These types of interventions literally kill people, and I suspect that if more effort was made to identify Autistic addicts before they died, this particular intersection would be discussed a lot more.
We also have to consider that society as a whole is not designed for Autistic people. Even the simplest of tasks can lead to burnout and anxiety, driving people towards emotional outlets that could ultimately lead to addiction.
Autistic people are a socially vulnerable group, not because of a lack of social skills, but because of a system that is not only not designed for us, but actively penalises us for being Autistic. Until that system is fixed, Autistic people will forever be at risk of trauma and subsequent addiction issues.
Is it any wonder we get “hooked” on things that feel rewarding when society is doing its best to oppress us?
Edit: I am in no way saying that Autistic researchers work is tokenistic in this post, I am trying to talk about how studies such as S10k claim to have included Autistics in the planning of their studies purely to try and justify unethical research.
It seems with each passing day there is a new article about a piece of autism research being conducted. There are always two common themes. The first is that the research is conducted by non-autistic researchers, who generally only include Autistics in a tokenistic way at best. The second is that pretty much all of the research aims to reduce the number of Autistic people, either by reducing diagnoses, or literally erasing us.
One could be forgiven for thinking that ableism is having a renaissance, but the truth is much more grim than that. The truth is, that ableism isn’t re-emerging, it never went anywhere. The main observable difference that I find now, is that people (researchers in particular) are being much louder about their efforts.
Their want to erase us, reduce us, eradicate us, has become much more overt.
Is it any wonder that Autistic people around the globe are suffering right now? Our entire lives we have endured systemic oppression and (not to mince my words) systemic violence, and now we face a world where we are literally being shown how much we are not wanted. It’s sickening.
We have the notorious Spectrum 10k project, who definitely don’t support eugenics *wink wink*, but also can’t guarantee that the data wont ultimately be used for that. Canada now has the Q1k study, which to me seems to just be S10k lite. We also have the study that pushed me into writing this. Reported by various news outlets as an “early-intervention baby therapy”.
This therapy, supposedly, reduces Autism diagnoses by teaching infants “better” social communication. One need only read the published study to realise that these researchers don’t care about the wellbeing of Autistic people.
The medical model is strong with this one.
The study is riddled with pathologising language. The study outcomes are also highly questionable. Why do you want to reduce the number of people receiving an autism diagnosis? From where I am sat, it seems that they either don’t want us to have support, or they have a problem with Autistic people and the number of us who exist.
No, there is no renaissance for ableism. It’s here, and it’s always been here. Society is afraid of us. To quote a term I recently saw used by Dr. Nick Walker, it’s autistiphobia. Something about our existence makes non-autistic society deeply uncomfortable, and in a more literal sense, hateful.
The thought that keeps going through my head is this; if they can’t bring themselves to actually improve our lives in a meaningful way, can they not at least let us live those lives? Why do we need constant reminders that our existence is so offensive to them that they will either ignore us, or erase us.
We are human beings with a right to live happy lives.
At what point did “Autistic” become synonymous with the word “broken” or “burden” in the non-autistic world? Even as I write this, researchers rush to speak over us, presuming, it seems, that we are incapable of speaking for ourselves. The world has a saviour complex, but we don’t want a saviour. We want people to listen to us.
We are treated like a perplexing puzzle that needs to be solved immediately. As if our existence is a public health crisis.
We have been explaining ourselves for long enough. It’s time that society at large began to listen to us. Where millions are poured into erasing us, there is a deficit in the support of those Autistic people who have been trying to help us for years.
I am not a crisis to be fixed. I am a human being, and I am sick of being held down.
There are many myths about psychosis. Chief among them that those of us who experience it are dangerous individuals. While there are predictors of violence towards others in psychosis (such as co-occuring substance use), generally those experiencing psychosis are more likely to be victims of violence than perpetrators.
As Autistic people, or parents of Autistic children, we can often find ourselves lost when it comes to mental health support systems. For many years, poor mental health has been treated as a part of the diagnostic criteria.
This is 100% incorrect.
While mental health issues are incredibly common amongst Autistic people, they are generally the result of trauma, and never a direct result of being Autistic. I know for myself that being in the CAMHS system, my mother and I were invalidated at every turn.
What they never managed to recognise in me was that I was entering what would be called the “prodromal phase” of psychosis. What this essentially means is that they missed the warning signs that I was heading towards psychosis.
What were the warning signs?
One of my earliest memories is of a hand materialising out of my mothers bed, to offer me a chocolate bar in my cot. I believe I was around 2-3 years old. When I reached out for the chocolate bar, the hand disappeared. I cried and cried until my mother came to comfort me.
I was unable to voice what I had just witnessed.
Throughout childhood and teenage years, I experienced terrifying “night terrors”. What they actually were was hallucinations and waking nightmares that were so vivid I still remember them to this day. They were put down to fevers by doctors, even when there was no evidence of a fever.
Finally at the age of 18, my mind snapped. I started hearing voices and suffering paranoid delusions. No one would be aware of this until I was well into my twenties, because the psychiatrist believed my mask, and I buried the experience under mountains of prescription and illicit substances.
Now, at 31, I have been stable for around 5 years, finally receiving appropriate treatment and care for my mental health conditions.
So, how can you recognise psychosis in your child or teenager?
First of all, look for a change in affect. This means a withdrawal from usual behaviour, often manifesting as a depressive state. Alternatively, they may experience a euphoric state that leads to them taking risks to their personal safety, known as mania or hypomania.
Perhaps they have become irritable or aggressive? While psychosis can’t be used as a solid predictor of violence, they may become more overwhelmed.
Does your child or teenager appear to interact or react to stimuli in the environment that doesn’t exist? When I am stressed, I often hear phones ringing, doorbells chiming, or people calling my name. None of it is actually happening.
Finally, are they becoming suspicious or paranoid? People experiencing psychosis can often develop paranoid delusions. For me this included beliefs such as my food being poisoned, or that I was trapped in a computer simulation.
While full blown psychosis doesn’t usually manifest before the late teenage years, it is important to be aware of the signs. I often wonder what my life would have looked like if someone had spotted the indicators earlier.
We can’t allow mental health services to fail our Autistic children and adults.
As Autistic people, we are uniquely wired to find the truest forms of beauty in the world. Our eyes can catch every detail of the rainbow in the mist of water, or the delicate complexity of a spiders web. Still, many of us bring havoc, wilfully and determinedly breaking that which should bring us comfort.
No human is above their destructive nature. Autistic and allistic alike.
One might look to more inclusive minds for hope, yet still they harbour thoughts that contribute to oppressive behaviours and attitudes. What hope then for Homo Sapiens when our greatest minds can not tear out the weeds at their root?
Even as I write this, I am aware of my own internal biases, and aware that I am unaware of many more.
The diversity of our world and society is where the truest forms of beauty lay, and yet mankind threatens to destroy that beauty in the name of personal gain, a gluttonous need to horde an abstract concept in a significantly less abstract vault (often unaware that the vault hasn’t existed for years).
The human race will sooner destroy itself than embrace difference.
We, the different, are marked for eradication, while those deemed to continue the status quo decide which of us are worthy of life.
All that is good decays, while we (the so called apex predators) quibble over what deserves preservation.
If we are to survive, the different must unite, and fight the rising tide of ‘sameness’ culture.