CW: Contains mentions of ableist, racist and sexist language as well as descriptions of eating disorders.
April marks Autism ‘Awareness’ Month; an annual occasion that inspires mixed feelings in many autistic people. From wearing blue, to highlighting and platforming autistic celebrities, the month sees a variety of attempts to generate discussion and ‘recognition’ of autism as well as the more recent addition of efforts to celebrate the lives of autistic individuals. And yet, discourse around autism, and disability more generally, remains alarmingly one-dimensional. An intersectional and inclusive conversation is long overdue.
Within mainstream media, autism has often been depicted as a white, cisgender male phenomenon: “a white person’s” condition. Rain Man, The Big Bang Theory and even autism-focused programmes like The A-Word or Atypical have centred on white male characters and their personal journeys with autism. The characters with Autistic Spectrum Disorder (ASD) are often portrayed as slightly quirky – usually in a cute or humorous way – and socially awkward to the point of humour and discomfort. Even discussions involving autistic individuals themselves do not tend to stray far away from the focus on white males and white people. Yet such narrowness of focus is fundamentally flawed and limiting. “The gendered and racialised nature of autism” desperately needs to be broken down.
Recent attempts have been made to highlight the prevalence of autism in those outside of the male autistic stereotype. Women with ASD often tend to be undiagnosed or diagnosed far later than men, with one girl being diagnosed to every four or five boys. Whilst many boys are diagnosed in childhood, perhaps after displaying behaviours such as avoiding eye contact or engaging in repetitive actions, autism is generally expressed differently in women, and it is not uncommon for a woman to reach far into adulthood before her autism may be recognised and appropriate support offered. Sometimes it can even take a woman reaching a crisis point before the symptoms of autism are recognised. Autistic women are, for example, more likely than their non-autistic counterparts to develop Anorexia Nervosa, a severe eating disorder associated with controlling and rule-driven behaviour that is also so common in those with autism. Often it is only through expressing other physical or psychological difficulties that a woman’s autism is noticed and a diagnosis obtained.
Race and ethnicity play a large part in an individual’s experience of autism, including the difficulty one may face in obtaining a diagnosis, and yet this remains shamefully overlooked and downplayed. The National Autistic Society notes that “there is a lack of research about the experience of (autistic) people from Black, Asian and minority ethnic” backgrounds, which has resulted in “autistic people in the BAME community” finding it even more difficult to get a diagnosis and the necessary support. A 2019 study of disparities in autism diagnoses of children linked belonging to a “non-White race” to the likelihood of having a clinical diagnosis (and thus not receiving the appropriate support). Often, it seems, race and ethnicity are not even factored into research seeking to understand autism and the autistic experience. A 2016 study analysed 408 studies of autism and found that only 18% of them reported the race, ethnicity and nationality of the participants. Where it was reported, of the total of 2,500 participants, 63.5% of them were white. Conceptions of autism still often seem to be coupled with whiteness.
For many autistic women and autistic People of Colour, low diagnosis rates are sometimes attributed to a failure in recognising particular behaviours as symptoms of autism. Low diagnosis rates in women are partially attributed to the practice of ‘masking’, when a person hides their autism by performing actions and behaviours seen as acceptable (by neurotypical standards). Masking is not gender-specific behaviour, but women with autism are four times more likely to engage in ‘masking’ than their male counterparts. This may involve mimicking the behaviours and actions of others, in an attempt to cover up social communication difficulties and anxieties, or ensuring engagement in eye contact with others, even though this may be an uncomfortable practice for many autistic people. For many women these behaviours allow them and their autism to slip under the radar, gaining them acceptance within neurotypical society. Countless studies have highlighted the emotional and mental toll undiagnosed autism and years – even decades – of masking can have on autistic women. One 2016 study noted that masking often leads to “increased stress responses, meltdown due to social overload, anxiety and depression and even a negative impact on the development of one’s identity”. Masking and hiding autism can have a detrimental impact on the health and wellbeing of women and yet, research has also suggested that “an individual’s ability to camouflage ASC (may) contribute to them achieving socially desirable outcomes”, making them feel more able to make friends, advance their social status and do better in job interviews when they mask their autistic behaviour.
Masking consequently means that autism in women and girls often appears very differently than in boys, as many more girls train themselves to suppress the behaviours that are most commonly associated with autism. The painfully awkward social interactions of The Big Bang Theory’s Sheldon Cooper or the emotional ignorance of Rain Man are often absent in the way that many autistic women present themselves. As such, symptoms of autism in women can be very different and even attributed to normal character traits, such as strict adherence to routine, being a ‘quiet person’, hyper-focused, or being emotionally reserved. Often these traits can be ignored or missed, further contributing to low diagnosis rates. The label ‘high functioning’ may also be given to autistic women, almost in recognition of the fact that they are so good at masking their autism and functioning effectively in an unforgiving neurotypical society.
Autistic People of Colour often face the challenge that their normal autistic behaviours are wildly misinterpreted. Writing in Spectrum News, author Catina Burkett, described how being a Black autistic woman has shaped her life. She discusses how “cultural stereotypes make it particularly dangerous to be autistic while Black”. For example her autism can lead to her being seen as an “angry Black woman” and “overly aggressive”, due to fairly normal autistic behaviour. The trope that autistic behaviour in People of Colour, particularly Black people, is aggressive and threatening can be clearly observed. Sia’s controversial new film Music has reignited discussions around the use of deadly restraints on autistic people, after a scene in the film depicted Music, the protagonist, being physically restrained on the floor by the bodyweight of her Caregiver. Such restraints are also frequently deployed by the police in an attempt to control autistic individuals. It is not hard to see how racial stereotypes can intersect with ‘threatening’ autistic behaviour, such as ‘meltdowns’ to create the impression that an individual is dangerous and needs urgently restraining.
Elijah McClain, a Black autistic 23-year-old, was killed in the US state of Colorado in 2019 when the police received a call claiming he had been acting ‘suspiciously’. Even after apologising, telling them “I’m sorry” and “I’m just different”, and begging them to “respect my boundaries”, they placed him in a restraint until he lost consciousness. When McClain regained consciousness and began to struggle, he was injected with what a review into his death has described as a “grossly inaccurate” dose of ketamine to sedate him. McClain was later declared dead, believed to have died from a combination of excessive force and the inaccurate dose of ketamine administered to him. McClain’s race – and the sheer, unrelenting racism of the police force – combined with the difference he tried to desperately explain, resulted in his tragic and brutal murder. The list of autistic People of Colour killed or mistreated by the police and authorities, due to a combination of blatant institutional racism and ignorance of autism, is vast. Any truthful conversation about autism must be nuanced and understand that autistic People of Colour face additional layers of struggle, living in fundamentally racist societies where their autistic behaviours are misunderstood and judged in conjunction with racist stereotypes, to devastating outcomes.
The National Autistic Society also describes how autistic people from ethnic minority communities have reported “facing judgment” and being “stigmatised” within their community on the basis of their autism. The Asian People’s Disability Alliance conducted an 18 month-long review between 2017 and 2018 into disability within the UK’s South Asian diaspora population, addressing the challenges facing individuals with disabilities within their communities. The participants reported high levels of stigma and stated that they had been “avoided, ignored or subject to negative comments…(and) negative attitudes”. The Report described how some participants “felt unwelcome in Asian places of worship”, no doubt partially derived from the notion that “people from some faiths believe disability was a punishment from God or a test to be endured”. It particularly noted the “stigma and taboos around mental illness” being “much worse than those around other disabilities” and though autism is not a mental illness, it appears to have been included in this category of discussion, as a condition around which the stigma was heightened. Much of this stigma seems to have been tied to notions of shame and honour; the study notes that autism was tied to “bringing shame on the family” and the idea of “poor parenting, particularly mothering”, specifically describing the experience of some Bangladeshi women with autistic children who face blame by their families, among others, for their child’s autistic behaviours. Autistic people and their families, from South Asian diaspora and minority ethnic backgrounds were less likely to access the necessary support for these reasons.
It would be wrong to think that autistic people of all backgrounds have not experienced shame tied to their autism and disability at one point or another. Yet, in cultures tied to values and ideas of shame and honour, as a number of South Asian cultures are, this experience may often be more acute and lasting. Studies into the experience of autistic individuals and their families in the US South Asian diaspora community similarly note the singularity of the South Asian experience due to “socio-cultural experiences…taboos…(and) superstitions”. This diversity of experience and diversity of challenges on the basis of race and ethnocultural background is still largely overlooked in white male-dominated societal understandings of autism. Autistic People of Colour continue to be talked over and even excluded from conversations about autism and disability altogether.
Shockingly, autism has been used to defend bigotry, extremism and violence, no doubt linked to the belief that autism is a singularly white experience. It was deemed relevant that the recently jailed PC Ben Hannam, imprisoned for his membership of the fascist group National Action, had autism, which experts claim meant he was attracted by the ideology’s association “with order and structure”. Not only is this deeply offensive to all autistic people – suggesting that their autism could allow them to be seduced by violence and fascism, so long as it’s orderly – it ignores the fact that a number of autistic people, particularly autistic People of Colour, are the targets of this far-right hatred. Writing in The Independent, Errol Kerr, the Chair of Autistic UK, explained that there was “real danger” in using “autism to explain away white male violence”, criticising the misuse of autism as a “get out of jail free card for cruelty and bigotry”. This no doubt partially stems from a significant failure to diversify narratives around autism and recognise and highlight the diversity of the autistic community.
Attempts to incorporate and centre the voices of autistic women in discussions have been highly rewarding, in raising awareness and validating the unique struggles faced by autistic women. Similarly, in recent years there has been a growing conversation about autism in people who identify outside of the male-female gender binary, generating increasing research about the experience of gender diverse autistic people. Such developments have been immeasurably valuable in helping to challenge the narrative that autism is a white middle-class male condition and have served to widen understandings of autism, to better accommodate and support those excluded by this archetype.
People outside of the male autistic stereotype experience autism and its challenges differently, and in amplifying a diversity of autistic voices, we must remember to consider race and ethnicity, as well as gender identity. Beyond that, we must examine how these different characteristics interact and intersect. Very little research has been done into how minority ethnic women, for example, experience both being outside of the male and the white autistic norm, or how cultural or religious values specific to a particular ethnic minority community or faith group further shape the experience of autistic people who do not identify as male. These are questions that are long overdue and urgently need to be asked if autism is ever to be considered through an intersectional lens.
It is not known the proportion of the UK’s diagnosed autistic population of 700,000 and the UK’s innumerable undiagnosed autistic population who identify as women and/or People of Colour. But we have a duty to represent those people and the diversity of challenges and experiences in our conversations about autism. Society’s treatment of Autism has been described as having a “white privilege problem” and this seems an apt way to describe it. However, to obtain a truthful and representative understanding of autism, it is incumbent upon us to look past autistic archetypes and to the true diversity of the autistic community.
Art by Rachel Jung