Some years ago, I wrote a similar article for Neuroclastic. I thought perhaps now was the time to revisit the topic with several years more experience under my belt. Too many times I have been told not to let my “autism” define me, that I am something other than Autistic.
So, yes, being Autistic is a defining feature of who I am. This isn’t to say it is the only defining feature, but it is a core part of my identity. Of course, it is more than an identity to me. Much like my being ADHD and Schizophrenic, it defines my relationship to the universe surrounding me. I imagine my Autistic brain as a singular point, an event horizon within which all things become Autistic.
When I wake up, I do so Autistically. When I hold my son, I do so Autistically. When I breathe my last breath, I will do so Autistically. Autism is not a separate entity that inhabits me. I do not carry my autism as one might carry a brief case. My autism is the words I write, the thoughts I think. Autism is the way I feel. Autism is the way I love.
I am David, and so is my autism. If I were not Autistic I would not be David.
When others ask me not to be defined by “my autism”, they are asking me to cease existence. I have no existence outside of being Autistic because everything I do, I do as autism. As Autistic people, we are the point at which autism stops being an abstract concept and instead becomes a living, breathing human. My humanity is Autistic, and I will never know of non-Autistic humanity.
I can not tell you what it is like to be Autistic in a way that you can fathom unless you also are Autistic. Autism is all we know. We have never been anything other than Autstic. Even when I queer my neurology and seek a new way to exist, I do so as an Autistic person. My autism is exploration. It is expression of Self that can not, and will not, perform typicality.
So, do not ask me to define myself outside of autism. To do so is to ask me to define myself outside of my existence.
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.
As you may have noticed from my most recent blog post, I am somewhat down a rabbit hole at the moment. In my previous article I discussed Zeno’s paradox of plurality and how it applies to the dehumanisation of Autistic people and the double empathy problem.
Today I would like to consider another of Zeno’s paradoxes and how it applies to the double empathy problem.
This particular paradox was known as the Dichotomy Paradox. Essentially, it explains that when travelling from point A to point B, one must first travel to the halfway point between the two. To then travel from that point to the destination, you must travel half way again. This continues infinitely when travelling towards a fixed destination and thus Zeno argued that you can never reach point B.
When considering communication across different neurocognitive styles, one must also consider what the goal is. If we presume that the goal is “successful communication” then the double empathy problem tells us that this is very difficult due to the different styles of communication. Despite this, Autistic people are always expected to be the ones to put the emotional labour into communicating. This has been discussed by Rachel Cullen, a recording of a livestream with Aucademy featuring them can be found here and here).
We then encounter the dichotomy paradox. Neurotypicals remain a fixed point in the goal of successful communication, while we as Autistics are constantly expected to move towards the goal by accommodating their preferred communication styles. It is as if we are constantly reaching the halfway point, and never reaching our destination. No matter how well we accommodate neurotypical preferences, we are caught in an infinite regression of distance, not achieving the aim.
This to me, highlights the deeper issue of dehumanisation and objectification of Autistics. Neurotypicals (perhaps subconsciously, sometimes consciously) consider themselves the pinnacle of humanity, a goal that all should be striving for. We know from the existence of the various compliance based behavioural interventions, that Neurotypicals do believe this in many cases. Evidenced by the fact that it is considered “gold-standard” to teach Autistic people to hide their Autistic nature.
As Dr. Monique Botha mentioned in their recent seminar, there is a reason why researchers and professionals insist on person-first language. “I want to eradicate autism” sounds much less like genocide than “I want to eradicate Autistic people”. However, both of those statements mean the same thing. This is justified because whether or not they overtly see it, neurologically queer behaviour and experience is seen as non-human. Remi Yergeau argued this dehumanisation was due (at least in part) to a perceived lack of rhetoricity in their book Authoring Autism.
Autistic people are viewed as husks, mindlessly performing nothing, controlled by an abstract spectre called autism. This then is perhaps why so many neurotypical people insist on person-first language, and ignore our preference of identity -first language. Why would they take a step towards the all consuming spectre? Surely it is better to leave such a thing trapped in that infinite journey towards a goal that is never to be reached.
This, then, is the appeal of neuroqueering to me. When I embrace my neuroqueer self, I no longer have to be trapped in the infinite journey towards performative neurotypicality. I escape the dichotomy paradox by abandoning societal expectations, and being true to myself. True to what nature intended for me. I am Autistic, I am divergent, and that divergence is a thing of beauty.
We need to raise up our fellow Autistics, high above the dichotomy of neurotypicality and neurodivergence. We need to embrace a world in which these words are redundant in meaning because no one group has the power to oppress another; and when our fellow Autistics are lost in the dark, we need to shine our own light, and guide them back to the daylight.
It’s a day that so many of us dread. For as long as “world autism day” has existed, it is a day where (much like every other day) adherents of the pathology paradigm do their best to drown out the voices of those that proudly display their Autistic selves.
Why are we so loud about our experiences as Autistic people? It’s not because we’re trying to take away access to support services for Autistic children, as a certain type of parent will have you believe. It’s because we want to make sure that Autistic people receive support that is not only accessible, but of good quality.
But is this far enough?
Yes, in the current world, we need access to that support. We live in a world that disables us with it’s oppressive nature. The higher your support needs, the more our world seeks to dehumanise you. Should we not be aiming higher than supporting people in a world that treats us like a phenomenon to be studied and experimented on?
Imagine, for a moment, a world where everyone is treated equally. Imagine a world where no one has privilege over another, and no group is marginalised. Imagine a world where being Autistic is no longer a medical issue that requires diagnosis.
This is the world we should be aiming for.
Sadly, societal neuronormativity makes such a world feel impossible. Even the most neurologically queer of us have been raised and indoctrinated into a type of groupthink that makes the act of queering oneself away from said normativity feel like an extreme sport
For some of us, being true to ourselves means putting our life at risk.
In order to move beyond our current society , we must do more than queer the self. We must dismantle the system in which we live and rebuild it. For the new system to work, terms like “neurotypical” and “neurodivergent” must become irrelevant. We need a societal divergence towards a new normal, one in which normal no longer exists.
For this to work, we need to move away from discussion around “disorders” and “conditions” and towards a world in which identity and culture take centre stage. A world where no one needs supporting because society works for everyone, rather than a select few.
This world autism day, we must step forward with a renewed fervour for not just the destruction of ableism, but the belief that a better world is possible. Let April 2nd 2022 be the day that we choose the neurodiversity paradigm.
Perhaps, this time next year, we can wake up to a society that’s just a little bit more accepting than the one we’re in today.
One day, trauma won’t be the collective experience of our autistic culture.
For quite some time now, the neurodiversity movement has spoken about the harmfulness of behavioural techniques. These techniques are used to prevent the outward indications of the Autistic neurotype. They are generally aimed at children, and almost always lead to significant harm being done.
The use of such techniques belongs to a wider issue with the way that society views neurodivergence.
What seems most obvious to me, is that the existence of words such as “neurotypical” already imply that there is a typical standard that we diverge from. Words like “typical” and “standard” can be considered the descendants of the pathology paradigm, and the ableism that came from that worldview.
Under the pathology paradigm, anything that sits outside of the box of “typical”, is broken and in need of fixing. In the case of autism, this has led to research into deficits, resulting in the direct oppression of Autistic people through the use of harmful cure culture.
This cure culture attempts to standardise the mind, hence “neurostandardisation”. It is an attempt to bring the neurodivergent individual into line with a neurocognitive standard of existence. It’s not always medical and behavioural interventions either, often it is the societal culture that forces neurotypical people to camouflage their neruodivergent traits.
The question then remains as to why society forces neurostandardisation onto people.
I am firmly of the opinion that society at large has three reasons for clinging on to the pathology paradigm, and using it to oppress and “standardise” others.
1. Those with privilege in this society are afraid that by giving others more, they will have less.
2. Keeping minority groups in an oppressed state, requiring them to “fit in” means that the privileged do not have to consider the failings of their own culture and society.
3. Those who thrive in the dominant culture are unwilling to put the effort into learning how to live equitably with minority cultures and groups.
When you consider the origins of bigotry, I start to feel like the pathology paradigm has played a huge role. Mel Baggs wrote of how most (if not all) forms of bigotry are rooted in ableism. Nick Walker writes extensively of the privilege of neurotypical autism professionals in her book Neuroqueer Heresies. One might consider that having privileged member of a dominant culture in a position of authority over a minority is a blatant conflict of interest.
Neurostandardisation can then be recognised as the forced assimilation of neurodivergent people into the dominant culture, while keeping them in a position of disadvantage. It is a tool of oppression that takes many forms, but is ultimately the goal of the pathology paradigm. A paradigm that seeks to invalidate the existence anything outside of it’s limited, reductive, and quite frankly incorrect view that such a thing as “normal” exists.
This is why the existence of advocacy is so important. Where oppression exists, we need voices that can shout loudly, and expunge the false beliefs of the current sociocultural paradigms.
Until those beliefs have been dismantled, neurodivergent people will always be lower on the ladder.
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.
We live in a world of false binary systems. It seems that everywhere you go, something is either one thing or another. The same can be said of the Autistic experience.
Many people are currently engaged in a long standing argument. Is autism a disability, facilitated by systemic trauma, or is autism a purely positive thing, with Autistic people living happy lives?
First of all, an incorrect assumption has been made in this argument. Disabled is not the opposite of happy. Being disabled is neither good nor bad, it simply is what it is. Disabled people can lead happy and fulfilling lives, they can also struggle immensely.
Yes, the system is designed and executed in such a way that systematically traumatises the disabled, but disability and happiness are not mutually exclusive.
This brings us to the second point. Like any other disability, autism is neither good nor bad. Not all autistic people are happy, in fact, many experience mental health problems as a result of the trauma they have experienced at the hands of the system. Assuming that autism is a gift, is not necessarily correct (depending on context).
This brings us to the title of this post. The duality of our experiences as Autistics is in our ability to accept our disability while striving for happiness. The acceptance of our disability so often allows our happiness.
Why can’t we accept that being autistic comes with good and bad? Telling the world that being Autistic is all sunshine and rainbows is not the answer to the medical model. We cannot depathologise by being in denial. Being Autistic can be hard.
This applies whether you are diagnosed, undiagnosed, or self-identified. The system that oppresses us affects us with or without proof of Autisticness. You don’t need a licence to be Autistic. You simply need to exist.
And so, let us move forward into a paradigm where we can reject the ableism that causes people to distance from the word “disabled” while remaining honest about our struggles. We are uniquely human, our neurotype is a mixed bag of experiences.
It’s April, so you know it’s about to get real bloody frustrating trying to be heard over the like of Autism Speaks and other problematic groups claiming to represent “people with autism”.
When it comes to the notorious Autism Speaks there is one thing in particular that we should facing up to. Cure culture.
Cure culture is the ultimate way to show autistic people that you do not accept them for who they are. It starts with better known interventions, such as ABA, and spreads all the way to dangerous quack cures such as Miracle Mineral Solution/Chlorine Dioxide abuse.
Why does society want to cure us? Because it values the status quo over the beauty of human diversity. Unless your quirkiness somehow makes you economically valuable, the world seeks to stamp it out. It’s the ultimate way that capitalistic society harms autistic people. Some people will literally murder autistic people rather than embrace our neurodiversity.
Let me lay it out for you. There is no cure for autism. Taking autism out of the person is like taking the engine out of a car. The car no longer functions as a car. Being autistic is our physical wiring, without it, we would not be who we are.
This is what upsets me so much when I see parents and carers seeking to “cure” their autistic children and loved ones. Yes, we face daily struggles, but how much do you have to resent your child in order to want to change them into a completely different person?
That’s what it comes down to. Resentment. The world resents us for existing. It resents us because we demand equal rights, and the world has to put in work to meet those demands. The old rules of “more rights for me, does not mean less for you” has never rung more true.
If I could stamp out one thing this April, it would be cure culture.
This April, please listen to and amplify #ActuallyAutistic voices. Be an ally to the autistic community.