Why women of colour are being left behind due to delays in autism diagnosis

Why women of colour are being left behind due to delays in autism diagnosis
  • PublishedApril 28, 2024

Khadija Gbla first found out they had autism and ADHD at the age of 34 after their five-year-old son, Sammy, was diagnosed with both conditions.

Sammy’s diagnosis was a light-bulb moment for Khadija.

“That afternoon I was lying down and thought to myself, ‘If Sammy is like me, am I like Sammy?'” Khadija said.

“That afternoon I was lying down and thought to myself, ‘If Sammy is like me, am I like Sammy?'” Khadija said.

Noticing similarities between their behaviours prompted Khadija to get tested.

Research has found that Khadija’s experience is not unusual, with women from culturally and linguistically diverse (CALD) communities often diagnosed with autism later in life, making their treatment more difficult.

To highlight Autism Acceptance Month, the ABC asked the human rights activist and inspirational speaker to share their story.

They said they wanted to let those from migrant and refugee backgrounds know “they are not weird” for being a little different.

“Where are all the black autistic people, where are the Asian autistic people, where are all the non-white autistic people? I don’t know where we are all hiding,” they said.

‘I was not allowed to be autistic’

Khadija was born in Sierra Leone and arrived in Australia as a refugee with their family at 13.

Growing up Khadija felt different, but their bubbly, and energetic personality was always the first thing people noticed.

But Khadija secretly struggled with fitting in. Socialising would often make them feel overwhelmed and it would take a long time to do everyday things that others did easily – all potential signs of autism.

Their mother had no understanding or tolerance for Khadija’s differences, which led to them “masking” or using strategies to hide or compensate for autistic traits – a common experience for autistic women, according to Women with Disabilities Australia (WWDA).

Khadija said their mum had no time for their sensory or food issues. 

“She said ‘we have no time for any of this,’ so you would not think that [you had autism] openly,” they said.

Having conversations about disabilities was taboo in their household.

“I was not allowed to be autistic, to be disabled. I was flat-out told it was not acceptable, that I’m a burden,” Khadija said.

“My mum says she wishes I was dead. I’ve been prayed for by an Imam, a pastor, a priest …[but] I still am autistic, proudly, autistic.”

Early signs overlooked by parents

2023 study on autism diagnosis found parents with CALD backgrounds, and those born overseas, reported concerns about their children later than the average parent, resulting in delays in treatment.

UNSW Sydney professor of psychiatry and mental health Valsamma Eapen was one of the senior authors of the research.

Professor Eapen
Valsamma Eapen says changes need to be made to make treatment more inclusive to CALD communities. (Supplied)

Professor Eapen said cultural stigma could affect the way parents or individuals view the signs and traits of autism.

“Parents may think of general shyness as a personality characteristic rather than specific differences or deficits in social skills, [which is] characteristic of autism,” she said.

Khadija’s attention deficit hyperactivity disorder (ADHD) diagnosis was easier to identify given they presented with common symptoms, but their doctor was originally sceptical of autism as they didn’t have the traditional behavioural traits.

Khadija says their race, gender, and the cultural competency of doctors may have played a part in their late diagnosis. 

Autism symptoms — such as trouble with communication, overthinking, and repetitive behaviours — can often also overlap with anxiety and mood disorders, according to autism and anxiety disorder research, making it harder to identify in adolescence.

Khadija’s ADHD symptoms were also masking their presentation of autism.

Khadija said it was only when their ADHD was treated that they began to notice more prevalent autism symptoms.

Professor Eapen said CALD children would benefit from being tested earlier “especially in the preschool years when the brain plasticity is maximum”.

But it’s not always possible, as sometimes some of the first signs of autism, like speech delay, could be “optimistically disregarded” and parents may make excuses for poor speech or social behaviour due to speaking a different language at home, she said.

Calls for changes in female diagnosis and increased awareness

A graphic showing a young boy looking up at an illustration of a brain
Research shows parents from multicultural backgrounds struggle with autism assessments done in English.(ABC News/Canva)

Professor Eapen is one of many calling for change.

She said new programs were needed targeting priority and minority groups that focused on better education about the early signs of autism. 

“It is essential that screening tools are sensitive to all aspects of development along with culturally sensitive awareness programs [that can be] implemented within the health care settings,” she said.

She said some parents from multicultural and lower socio-economic backgrounds struggled when assessments were done in English.

Without the financial resources to seek out private health treatment, many in these communities also received delayed diagnoses due to long wait times in public health services.

Women also often presented more nuanced symptoms of autism, which is another important factor of delayed diagnosis, according to WWDA.

Recent WWDA research showed an estimated 80 per cent of autistic women and girls remain undiagnosed at the age of 18.

WWDA acting chief executive Sophie Cusworth said there was a gender bias inherent in the diagnostic criteria and the tools by which people were assessed.

“Women often mask their traits and mimic socially accepted behaviours,” she said.

“Autistic women also camouflage our traits and so it may look like we are not struggling.”

Much of the early research on autism excluded women and girls from study populations, and studies examining the validity of diagnostic tools often only used primarily male samples, she said.

“Autistic women and girls can often present differently to autistic males in relation to each of the core diagnostic criteria,” she said.

Autism was “medically characterised by deficits in certain areas of behaviour”, Ms Cusworth added.

She said this approach could be harmful to the autistic community, as it meant their behaviour was viewed as a negative, rather than embraced for uniqueness.

‘My child gave me a gift’

In Khadija’s case, they were often told growing up that they would not amount to anything because of their autistic behaviours.

But despite this, Khadija said they would not make the same mistake raising Sammy — they would embrace Sammy’s uniqueness instead.

A woman in a gold dress and white hair is smiling and pointing up, like she's dancing.
Khadija Gbla wants to break generational patterns by supporting their son through his autism diagnosis.(Supplied: Alice Healy )

“When I got my child’s diagnosis, I was so proud of both of us,” Khadija said.

“I’m glad I have this information so I can meet my child’s needs, and I can advocate for them.

“That diagnosis led to my diagnosis, so my child gave me a gift.

“But now I am parenting little Khadija alongside my child and parenting the inner child who was never allowed to be disabled.”

Khadija wants autistic migrant and refugee children suffering from cultural stigma or backlash to know they are not alone.

“They are not an abomination. They are not curse. They don’t need some cure. We’re not a disease,” they said.

SOURCE: ABCNEWS

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