Autistic people in Bendigo falling through the gaps as late diagnosis, lack of services takes a toll

Another autistic woman in Bendigo has told her story of late diagnosis and no support services in central Victoria - adding to the voices from the parliamentary inquiry. Picture: DARREN HOWE
Another autistic woman in Bendigo has told her story of late diagnosis and no support services in central Victoria - adding to the voices from the parliamentary inquiry. Picture: DARREN HOWE

Related: 'All we were asking for was understanding': Spotlight on autism concerns in Bendigo

AFTER seeing a total of eight different psychologists and three psychiatrists in seven years, Eaglehawk resident Shannen Peers had to wait until the age of 23 before she was finally diagnosed with autism.

The diagnosis was the end of a long road – none of her previous diagnoses had fit.

She did not match anxiety disorder, depression, ADHD, social phobia, agoraphobia, or primordal psychosis – conditions that doctors attempted to place on her since her teenage years.

Ms Peers was medicated for disorders she did not have. The medications did nothing for her.

“From as young as I can remember, I knew there was something different about myself, and it became more apparent to me as a teenager that I could be on the autism spectrum,” she said.

“I was just waiting for a professional to pick up on it, but many times when I went to see someone, I didn’t feel like I had a chance to say much at all. 

“They would just throw a diagnosis at me without knowing much about me and what I’d been like throughout my life.”

Her struggle to reach an autism diagnosis is not uncommon in Bendigo.

A Victorian parliamentary inquiry into autism spectrum disorder found regional areas suffer a lack of autism diagnosis services, and teachers have minimal training in supporting students with autism.

There is also a lack of support services for adults diagnosed with autism.

These issues matched with Ms Peers’ experiences of growing up as an autistic female in Bendigo.

Had she not been to the same Strathfieldsaye GP for several years, she would probably still be searching for the diagnosis that fit her.

“He told me that after a few years of observing me, and after ruling out everything else – medication, psychologists, psychiatrists – that he is certain that I am on the autism spectrum,” Ms Peers said.

“I was incredibly relieved that someone had finally said it, and my mum was in tears because she was just as relieved, if not more, than I was.”

The GP referred her to Melbourne to speak with a counsellor or psychologist who understands autism. 

Despite the joy at receiving the diagnosis, the waiting list for services in Melbourne could take months.

She claimed there was no support in Bendigo.

“I have tried contacting people around Bendigo to see if there is anyone who understands or specialises in autism, but it appears there are only a couple of them here that assess and work with young children with autism – but none that work with adults,” Ms Peers said.

“It is difficult for me knowing that there isn’t any help or support available for me close to home.”

While her diagnosis opened some doors to support in Melbourne, it appeared to close others in Bendigo.

One mental health service, which Ms Peers had seen just over a month earlier, could no longer work with her because they did not specialise in autism.

It’s a situation she hopes can be fixed in the future.

“More and more people are being diagnosed each year and with Bendigo being one of the biggest country towns in Victoria, I believe there should be more resources and support available for those with autism,” Ms Peers said.

“I am hoping Bendigo jumps on board in the near future. People seem to be spreading more awareness about autism than ever before, and I plan on spreading awareness also.”

In the parliamentary inquiry, submissions spoke of the importance of getting the correct diagnosis.

Distinctive Options chief executive officer Murray Dawson-Smith has called for better teacher training for children with autism.

Distinctive Options chief executive officer Murray Dawson-Smith has called for better teacher training for children with autism.

One parent said autism “is my identity”, and their diagnosis gave them “validity and empowerment” while also allowing them to access support services.

In its submission to the inquiry, the Victorian branch of the Royal Australian and New Zealand College of Psychiatrists agreed that it was difficult for adults diagnosed with autism.

There is a lack of support services in Victoria – a situation worse in regional areas.

“Victorian research indicates that a significant number of young adults with ASD are unable to access the support services they require,” the submission read.

“Generalist public mental health services do not always have the expertise available to assess and identify the complicating presence of autism spectrum disorder in adults with mental illness.”

If it’s difficult supporting adults with autism, it becomes even more problematic when the adult is a woman, and they live in the country.

Males are four times more likely to be diagnosed with autism than females.

Ms Peers said the tendency to “mask” their struggles and to “mirror” those around them meant autistic women were often overlooked.

The Victorian Disability Advisory Council suggested gender bias could be behind the discrepancy.

The council found there was a “gap” in their knowledge of the experiences of autistic people living in regional Victoria, and more research needed to be done.

“People living in regional and rural areas have difficulty accessing high quality assessment and diagnosis services with many having to go privately with significant out of pocket expenses,” the submission reads.

The state government has until December to respond to the inquiry’s report, which made 100 recommendations.