Becoming a CALD Autistic Advocate
By Helen Said, Culturally and Linguistically Diverse (CALD) Autistic Advocate
Advocacy has been part of my story for a very long time. It started with Dad's multicultural involvements and the influence he had on my young life, and grew when I attended university and joined the socialist movement. By the time I was diagnosed Autistic, I was 55 years old and I had already been involved in a string of community movements and campaigns, as well as my daughter's early intervention. For me, it was natural to delve into Autism advocacy, where there was clearly a need for more strong and diverse voices.
I was born at a very stressful time for my family. They were then refugees from Egypt's 1956 Suez Canal War, living in London. Dad was a Greek-Maltese British Subject and, as such, his extended family's assets had been frozen during the hostilities between Britain and Egypt. Eventually hostilities thawed and the two counties started negotiating. As Dad was the only man on his side of the family who had attended English school, it became his responsibility to advocate to British authorities for the return of some of our family's wealth. They had fled Egypt with just five pounds (hence the name of my family biography "Five Egyptian Pounds") and needed to re-establish their lives.
With just primary school level English and a fountain pen, Dad began copying the formal style of English correspondence and writing letters to the authorities. His advocacy was successful and the family received enough compensation to put a deposit on our house and my cousins' house in Kingsbury, north-west London.
By the time we came to Australia in 1962, we were all very competent English speakers. Dad was one of very few Greeks who could speak English and he began advocating for the local Greek community, who were then down-trodden new migrants. Advocacy eventually became his full-time job, when he became a Community Development Officer during the Whitlam era, and later, an Ethnic Relations Consultant in industry.
Dad would come home and talk passionately about his work around the dinner table, describing the desperation and unmet needs of migrants in the community and exploitative workplaces, and the new multicultural philosophy being pursued by the government. This would help answer some of the questions in my own mind about the racist and sexist prejudices and inequalities I had experienced. These conversations began giving me the tools and language I needed to speak out. Nothing was known about Autism in those days, but being able to analyse and articulate at least part of my story made a big difference to me.
The next major influence in my life was going to university, which thankfully remained free for a few years after Gough Whitlam's downfall. At university I dived into activism, and chopped and changed a few courses while activism took over my life. I needed to understand more about society's ways and inequalities and I needed to become vocal, given that I was a very shy undiagnosed Autistic. As I was feeling very out of place in the male dominated sciences, Melbourne University Women's Liberation was my first port of call. It wasn't long before I found out about the dangers of nuclear power and global warming and a host of other social and environmental ills.
Putting my understanding together, I felt the need to join the socialist movement. These days I belong to the Socialist Left of the Labor Party. It's not because the Labor Party is perfect - it isn't - but it's because the Labor Party is a broad and accessible political home that can unite enough Australians to form a more progressive government.
Along the way I have participated in public transport, disability and single mother campaigns, and since diagnosis, I have been involved in Autism advocacy. There's a common source of oppression at the heart of all inequities and environmental destruction - a ruthless, profit motivated system and the toxic social and economic hierarchies that support it. The skills and understanding I gained from each progressive movement helped me contribute to the next one. I carried that understanding with me when I took my daughter to early intervention. I looked at the services the way my dad might have and asked myself how well they served more newly arrived migrants. All of this was a kind of catalogue of knowledge, skills and confidence that I took with me into my Autism advocacy.
About 12 years ago, while contemplating going for the diagnosis, I began researching Autism amongst ethnic minorities. I found nothing from Australia, only a Black American who said people tell her "I thought only white folks got autism" and an Asian American who said they had trouble getting a diagnosis because "everyone thinks Asians are supposed to be nerdy anyway". And I realised this was it - I had been made to feel that my Autistic attributes had racially stereotyped explanations - a "Mediterranean temperament" and "cultural repression" had been invoked to explain my Autistic attributes. It's not that someone had directly said this to me, it's just that the racist stereotypes were so pervasive that they had seeped into the way I interpreted differences which seemingly had no other explanation.
I thought this was a hot discovery, but not a lot of other people did. Virtually nobody in Australia, at the time, seemed to be talking about different ways of diagnosing Autism amongst ethnic communities, different pressures on Autistic migrants, different ethnic foods you could eat if you have IBS, different ways that racism might impact Autistic migrants. It was no use trawling the internet to find someone who had started the conversation; the only person who was going to start the conversation was the person in the mirror.
My first foray into talking about CALD Autistics was in 2018 as part of Spectrum Labor, (the fore-runner of Neurodivergent Labor), a group I had co-founded the previous year with a Labor comrade. At the time we only had two members in Victoria and we both spoke about Autism to a crowd of about thirty at a Victorian Labor Conference fringe event. Nothing like this had been done before in the Labor Party, and I didn't know of any other speech that had been about CALD Autistics. I built upon this speech in Neurodivergent Labor's online forum held during the pandemic and in my submission to the National Autism Inquiry.
One day I came across an ad for research about Autistic women, asking what are our priorities for research, and I decided to participate. I prepared five pages of notes about the issues facing Autistic CALD women, and I said things like, "If a white Australian Autistic woman likes comfortable clothes, and wears a long loose dress, everybody gets that she is being counter-cultural and making her decisions, but if I wear the same long, loose dress, some people think I have a strict, traditional husband who makes me dress this way and that I am this poor repressed migrant woman who needs them to give me fashion advice and liberate me." And I said a whole lot of other things. Then the researcher asked me if I would be interested in participating in CALD Autism research and could she mention my interest to researchers in the field and I said yes.
That was when I got my break and joined CALD Autism research advisory groups. These are the published research papers I have contributed to so far:
Chinese families Autism research:
South Asian families Autism research:
CALD Autism education research:
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There has not yet been any Australian research into the needs of CALD Autistic adults. I continue mentioning this to researchers and I am told something may be in the pipeline for 2025.
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