SEEING their child lose her “love of learning” was heartbreaking for parents Susanna and Martin Flanagan.

The Bendigo couple and their three children – aged 17, 7 and 6 – are autistic, and their experiences attempting mainstream schooling resulted in profound deterioration of safety and wellbeing.

“It was shattering,” Ms Flanagan said.

“Even after trying a second school, we could not find an inclusive educational environment.

“The support we received was always only to a level. We would always provide everything that was needed, we weren’t asking for it from the school.

“All we were asking for was understanding.”

They found the commitments from the two schools would only go so far, and the family was providing most of the resources themselves. It placed an unnecessary strain on their family, and their children’s learning suffered as a result.

The Flanagans felt their only option was to withdraw their children from schooling and to begin home-schooling.

“Schools just aren’t inclusive. We had to stop schooling altogether and start a recovery period,” Ms Flanagan said.

“There was a period of regaining trust after their experiences with school, and reminding them that we have their back.

“There’s a realisation that school isn’t going to happen again unless they choose it.”

The children learn differently, at varied times and in various locations – following passions and interests and their spontaneity, fascination and intrigue is starting to return.

It’s a situation that’s unlikely to be unique for just the Flanagans in Bendigo.

The family is heavily involved in the Bendigo Autistic Advocacy and Support Service, where they attract hundreds to regular events.

They hold sensory gymnastics classes and other sessions for autistic children.

Ms Flanagan said community-driven programs were a major help for families in Bendigo – but it was often difficult to cater for the demand without support.

“There’s nothing else like it in Australia,” she said.

“Kids are loving and responding to programs we are introducing.”

The parliamentary inquiry flagged the possibility of more government funding and support for community-driven programs like BAASS.

When Chloe Fitton was diagnosed with autism at the age of 20, there was a sense of overwhelming relief.

“It was like, wow, this makes so much sense. This fits me. This explains so much of my experience as a human being,” she said.

Self-described as “odd”, she always felt she had to guess what people meant when they spoke, and struggled to fit in.

The Bendigo resident hoped the long-awaited autism diagnosis would help her find more support.

But as it turned out, the opposite was true.

“I had pretty much nowhere to go after that,” Ms Fitton said.

“It is a very peculiar thing to experience, and we need to help people that are going through that. 

“Especially as it is becoming more common for adults and especially adult women to be getting diagnosed, we need those supports in place.”

She is just one of the many people in Bendigo who have found themselves given a range of different diagnoses during childhood, only to find out in adulthood that their suspicions were right all along.

In most cases, misdiagnosis affects females with autism.

Ms Fitton was told she has bipolar disorder, obsessive-compulsive disorder or personality disorders – conditions she does not have – and was shunted around the mental health system without receiving proper support.

“I have had beyond terrible experiences with the public health system. No one knows what autism is or can be, or the ways that we may struggle to communicate,” Ms Fitton said.

Her eventual autism diagnosis should have been the end of a long, confusing and often traumatic road. But it wasn’t.

“There is nothing that I can reach out to. There is nowhere that I can really go to that can help me,” Ms Fitton said.

Being diagnosed as an adult also presented new challenges – Medicare rebates for assessments have an age cap.

Ms Fitton wanted to use her experience to help others. She spoke passionately at public hearings as part of a Victorian parliamentary inquiry into autism services.

Her evidence was used heavily in the eventual report, which made a range of recommendations.

For Ms Fitton, one of the best ways to find support ended up being to seek out like-minded local people online.

“It is really refreshing to not have to put up that face of having to think through everything I say before I say it, because a lot of the things I say do not come out right,” she said.

“So being able to network some autistic people especially in a place like Bendigo and other regional centres where we can get together and just be ourselves is really important.”

The parliamentary inquiry into services for people with autism spectrum disorder made 100 recommendations.

The report, tabled in parliament at the end of June, included evidence from a range of advocates, including a number from Bendigo and central Victoria.

The recommendations included:

Member for Bendigo West Maree Edwards chaired the parliamentary inquiry, and said the response from the autism community showed there was a lot work to be done to improve services.

“The thing that came through loud and clear: People want more choice,” she said.

The state government has six months to respond to the report.

Ms Edwards said updating the State Autism Plan was likely to be the first step, before funding for other recommendations could be considered.

“From what we’ve heard, there are some fantastic community-driven services. The autism resource centre is one example,” she said.

“There’s a recommendation to audit government services. There are many community services that don’t receive government funding. That could change in the future.

“Bendigo has a very strong and supportive community, but we know there’s more to be done.”