The first major report into autism in Aboriginal and Torres Strait Islander communities has revealed a lack of tailored support and services is leaving many families feeling uncertain about their children’s futures.
Gamilaraay woman Mikala Sedgwick knew in her heart something was up when her usually talkative 12-month-old son’s speech began to drop off.
The mother says Felix's declining communication skills seemed odd after six months earlier his “babbling” had started at a surprisingly young age.
She and her partner Pete had initially believed the behavioural change could be the result of his hearing difficulties.
But at two and a half, Felix was diagnosed as being on the autism spectrum.
“It was such a stressful time and not having that clear pathway to diagnosis and knowing what supports are out there – it made it a lot more difficult,” she told SBS News.
“It can sometimes be a lonely road particularly dealing with a new diagnosis.”
A health and disability researcher, Ms Sedgwick now considers her son’s early diagnosis fortunate timing, helping her family begin the journey of getting him access to the right care and therapies.
But the first major report into autism in Indigenous communities has revealed many families struggle to find tailored support and services.
Macquarie University researchers listened to the accounts of 12 Aboriginal and Torres Strait Islander families with a child with autism, from city and remote communities across Australia.
Many reported feeling isolated and delayed diagnoses were common.
Some mothers said that basic therapies were simply unavailable in their areas.
One mother in remote Australia travelled 1,000 kilometres every six months to take her boys to therapy services in Darwin.
There was also a lack of trust with the government, owing to the number of Indigenous children placed in out-of-home care and experiences of racism in mainstream services.
And mothers felt they did not have much “choice” in what schools their children attended.
Labor's spokesperson on Indigenous affairs Linda Burney told SBS News introducing the perspective of Indigenous families with children who have autism for the first time was “groundbreaking” research.
“What this report does is provide a First Nations perspective on autism – how to recognise it, how to deal with it, how to cope and address the issues from a culturally safe place for First Nations people,” she said.
“This told the story particularly from a mum’s perspective trying to get services and work through what’s a very challenging, often confronting and confusing array of services.”
Autism is estimated to be just as common in Indigenous communities as other groups with an estimated one in 70 people in Australia on the spectrum.
It is a developmental condition that affects how a person interacts with the world socially and can involve difficulties communicating and restricted or repetitive interests and behaviours.
Ms Sedgwick, who is also a co-author of the report, said it broke her heart hearing the challenges being faced by other Indigenous families with children who have autism.
She said she feared for children living in remote and regional areas, who are miss out on support.
"These poor kids just don’t stand a chance,” she said.
A range of state and territory-based autism organisations provide information, advocacy, advice and diagnostic and early intervention services across the country.
Some families did share positive experiences with these services, especially some who were living in very remote Australia.
Australians with autism also constitute approximately a third of all participants under the federal government's National Disability Insurance Scheme, with the Autism Advisory Group established to provide a voice for them.
A national guideline for the diagnosis of autism also came out in 2018 to assist health professionals.
The report said while these steps were "encouraging", the lack of research into culturally-specific understandings of autism still held potentially far-reaching implications.
The cost of diagnostic services, lengthy wait times, limited access to diagnostic professionals and support, and perceived stigmatisation during encounters with health professionals were all identified by families in the study.
The report also found limited research on Indigenous children with autism suggests they are often misdiagnosed or missing out on a diagnosis altogether, partly as a result of cultural and language factors.
Macquarie University’s report co-author Rozanna Lilley told SBS News there has been a failure to recognise Indigenous culture and meet the service needs of these families.
“Given the extra vulnerabilities of that population those kinds of problems that many families experience are intensified,” she said.
“A number of the people we spoke to were living in regional or remote areas and many of those difficulties are intensified in those areas."
Ms Sedgwick’s son Felix, who is six-years old, is now attending a mainstream school in Canberra and spends much of his time in specialised classes.
Some consider him "non-verbal" but his mother prefers the term pre-verbal.
“He is babbling a lot and his speech is coming along. I’m sure when he’s ready we won’t be able to shut him up," she said.
She wants to ensure other Indigenous families with children with autism have access to the care and services they need.
“The diagnosis is just happening too late and they are missing that core window of opportunity to really help their children with early intervention,” she said.
“The challenges are there and we just need to have better pathways for families that are coming through.”