Written by Helen Said
It wasn’t easy growing up in the 1960s and 70s, before the days of anti-discrimination laws, and before anything was known about Autism. While being lightning fast at maths, I was inexplicably poor in sports and only had a small circle of friends. My family’s mixed ethnic heritage attracted endless curiosity and harassment.
My colouring left me vulnerable to angry comments and questioning in the playground and in the street. Even teachers segregated migrant kids and voiced their misconceptions.
I would prefer to look back on childhood as a time of innocence, without having to remember things like, “How come you’re so brainy? The Greeks are supposed to be dumb…. Would all the Catholics come to the front of the classroom please…. Where do yooooooou come from?…. What do you do to get rid of your body hair?….. Girls will fall behind boys in maths when they turn 14, I read it in a magazine…. No man is going to want to root you…..” and, after helping boys with their maths homework, “Bloody bitch! You must be one of them women’s libbers!”
Was it any wonder that I experienced situational mutism as a child, with a language change at age 3, a migration at age 4, and a barrage of racism and sexism beginning at age 5?
My tentative steps to come out of my shell socially were so often met with curiosity, disapproval and racist and sexist assumptions that it often didn’t seem worth the effort. At university in the late 1970s, I met the liberation and protest movements which helped give voice to many of my experiences, but they too could be non-inclusive, with a heavy emphasis on Anglo-Australian pub culture. I eventually gravitated towards community and political organisations that meet in the multicultural suburbs and online.
Since being diagnosed Autistic in middle age, I have volunteered for Autism research and described my early experiences – from being told to sit on the slow learners’ table with other brown skinned children, to being made to wear customary gold jewellery and fussy dresses that creeped me out and made me feel uncomfortable, to being expected to kiss relatives when I disliked touching people. I managed this expectation by kissing the air, just above Aunty’s powdered, perfumed cheeks, and stayed awake through long, chatty, family gatherings by eating snacks and zoning out until it was finally time to go home.
I have tried to make researchers understand that there is an Autistic migrant experience, as well as a female Autistic experience, that is worthy of acknowledgement and research. I have since been invited to join research co-production advisory groups which focus on supporting Culturally and Linguistically Diverse (CALD) Autistic children and their families.
I am unaware of any Australian research into the needs of Autistic adults from diverse races or cultures. The needs of CALD Autistic adults are still in the “too hard” basket.
There are so few adult migrants who receive the diagnosis, or are willing to talk about the diagnosis, that such research would yield very little data. But things are starting to change and I am privileged to be part of that conversation.
It is unsurprising that migrant women are less likely to be diagnosed as Autistic. If we are anxious, we are labelled hysterical foreigners and if we are shy, we are assumed to be repressed by our culture. It’s easy to internalise the “othering” we experience and to view our differences and difficulties through an ethnic lens. We are brought up to be people pleasers rather than to acknowledge our own needs. It has been well-said that migrant women have to walk a tightrope to gain acceptance in Australia. If you are an Autistic migrant woman, you are bound to be the first one to fall off, and to be shunned.
Even if we think we fit the criteria for a diagnosis, it is much harder to seek a diagnosis coming from a culture which doesn’t understand or accept disability. While there is disability discrimination everywhere, many migrants come from poor countries where people don’t access up-to-date information. In such countries, poverty is endemic and any level of disability is hugely onerous on families struggling to survive.
Disability becomes so stigmatised that many people become secretive and superstitious about disability, so any hidden disability is likely to remain hidden.
In addition, as people of colour, our families are well aware that we have to be twice as good to get half as far in white Australian society. As well as being affected by the insecurity of escaping war and poverty in our home countries, migrants often go to extraordinary lengths to beat racism and succeed in Australia. There is a huge pressure to be perfect. Psychological stress or hidden disability has to be buried to appear successful at all costs.
When I was diagnosed in 2013, I went searching for information about CALD Autistics online. The only information I could find was a comment from a Black American saying, “People told me that only white folks got Autism” and an Asian American who said it was hard to get a diagnosis because people thought Asians were supposed to be nerdy anyway.
Covid restrictions and the Autism diagnosis have finally freed me from the expectation that I have to kiss relatives.
But as long as society’s understanding of Autism is focussed around white, middle class Autistic boys, many people from diverse backgrounds are going to miss out on getting a diagnosis. This means missing out on service provision, self-awareness and being able to build our neurotribe within multicultural communities.
Helen Said was diagnosed as Autistic at age 55, following the diagnosis of her younger daughter. She works as a maths and English tutor. She is a member of Positive Partnerships’ Autistic Advisory Group and La Trobe University’s CALD Autism research advisory groups. In 2017 she co-founded Spectrum Labor (later known as Neurodiverse Labor and now named Neurodivergent Labor). Helen is currently campaigning to end disability discrimination in the migration process. For further information, or to get in touch, please message Neurodivergent Labor’s facebook page or email firstname.lastname@example.org.
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