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Is There an Underlying Problem With How We Frame Autism? Gender, Race, and Misdiagnosis

When I was 16 years old, hands flapping rapidly against the arms of the therapy room chair, a psychologist informed me I had Asperger’s Syndrome. I had never even considered it before, I barely knew a thing about autism spectrum disorders, but once I started learning, everything quickly fell into place. But it left me wondering: why was I diagnosed so late? How did no one notice, in all the years I’d been at school, that I was autistic?

The reality is that many autistic people slip under the radar when it comes to diagnosis. Depictions of autism frame those who have it generally white and male, with some patronizing puzzle pieces added in. The media encourages this framing through the overwhelming amount of fictional, white, male, autistic characters (such as in Rain Man, Adam, Mozart and the Whale, Dear John, and others) which become the fixed idea of autism in many people’s minds. Along with that, the medical field has largely focused on the way in which these white boys present their symptoms, and their symptoms end up as the yardstick of the diagnostic criteria.

Autism is a very complex disorder with a lot of facets, but its central traits are impairments in social interaction, social imagination and social communication. Girls and boys often learn very different ways of socialising and communicating with people, with young male socialisation often being more aggressive, whilst young female socialisation often involves more dialogue. Because of this, many autistic girls have to learn how to communicate in social situations from a young age, but do not pick it up as easily as their allistic counterparts; instead, autistic girls create what we call “scripts.”

Using social scripts many autistic girls create set sentences and words to say in social interactions in order to pass as allistic. This takes a lot of effort and can exhaust autistic girls; however, to the casual observer they appear to have the ability to socialise and so are overlooked. But it cannot be wholly assigned to that. After all, not all girls play the same, not all girls are brought up the same, not all girls are raised as girls, not all autistic girls are verbal or create scripts, so how is it that girls are so under diagnosed compared to boys? We have to consider the fact that many people and doctors just do not comprehend girls being autistic; it is seen as an entirely male disorder. Most studies of autism focus on autistic boys; most books on autism, fiction or not, are about autistic boys; most discussions centre autistic boys. Girls are left out, and the ramifications are massive.

Non-binary autistics are left at even more of a loss, as there is almost no information on the presentation and care of autistic non-binary people. As such, we cannot say for certain whether they are being under-diagnosed. However, it is very likely that they are being missed–especially transfeminine non-binary people.

This is a problem that reaches further than gender. Black children and poor children also appear to have a lower rate of early autism diagnoses, in what are most likely more issues of missed and mis-diagnoses.

Black children often face labeling from teachers and staff in schools, in which they are seen as “bad students” from the start, then treated as such. Because of this labeling, they themselves are blamed for any issues or struggles they have in school and any possibility of them being autistic is often missed; indeed, research has shown that black children get diagnosed on average two years later than white children. The ignorance of doctors contributes greatly to these missed diagnoses; I recall the experience of one of my autistic friends having a doctor be surprised when he met them, commenting that he “didn’t realise black people could have autism.” It is no secret that the medical industry has routinely failed black people, and this is no different; autistic black people are viewed as either non-existent or anomalous.

In addition, black people are more likely to be in poverty and they, along with other working class groups, face additional barriers. In the UK, up to the age of 16, the NHS can pay for or subsidise costs for diagnosis; however past that and in other countries it is not so easy and diagnoses can cost over a thousand pounds privately in the UK alone, which many families cannot afford. As a result, white boys from wealthier families tend to be more likely to get the diagnosis and the care they need and go on to be seen as the “norm” of autism, whilst the autistic people who most need help are left behind.

I do not wish to see more people endure what I did–experiencing years not understanding why they are so different, feeling upset, disorientated and broken. Discussions of autism need to start prioritising marginalised groups, there needs to be research done on non-binary autistic people, and autistic black children, especially girls, need to be taken seriously.

Of course, this is all part of a much wider reaching problem which cannot be fixed so simply and on a small scale. As long as women, non-binary people, people of colour and poor people are dehumanised along with other oppressed groups, they will be abused and discarded by the medical industry. However, that does not mean a conversation cannot be started, it does not mean we cannot make some changes. More than anything, we need to trust in the voices and other communication methods of further marginalised autistic people.

In particular, self-diagnosis needs to be supported for these groups. Lack of access and understanding by doctors means that many autistic people will either never receive a professional diagnosis or will receive one late. Therefore self-diagnosis is one major avenue left.

Autistic people deserve the right of self-determination. We deserve to know who we are without having to pay more money than we have, and we deserve to be acknowledged when doctors ignore us–so that children on the autism spectrum will no longer be left confused, upset and alone.