Autism community encouraged to have a say on new national diagnosis guidelines

A lack of consistency in diagnosing autism spectrum disorder continues to frustrate worried families. In some cases a diagnosis can take years, delaying treatment and therapy. But it’s hoped new national guidelines could change that.

For Renee Bertolus and her daughter Grace, affectionately known as Poss, an autism spectrum disorder (ASD) diagnosis changed her life.

“I just don’t know what the outcome for Poss would have been, had we not had that diagnosis. I hate to think about it. I don’t even know that she’d still be with us…” says Renee.

“She was incredibly depressed, she was on anti-anxiety medication from quite a young age, she was really struggling. A diagnosis opened the door for us to get her the right help, and if we hadn’t had that, I honestly don’t know what the outcome would have been,” she says.

Renee feels like Poss was lucky. She was diagnosed with autism as a five-year-old which meant she could get help early.

A survey by Autism Awareness Australia found one in five families had to wait more than two years just to get a clear diagnosis.

For the first time in Australia, new national guidelines on how to diagnose autism have been drafted by Autism CRC, in conjunction with the National Disability Insurance Agency (NDIA).

The draft guidelines have been published, after 12 months of research and discussions with the autistic community, their families, clinicians and policy makers.

76 recommendations have been made. They include specifying who can make a diagnosis and their required qualifications, decision making guides for health professionals, and report templates to be used as part of an autism assessment.

Autism symptoms can be hard to define and interpret, so one person might currently get a slightly different diagnosis from different professionals.

Clearer diagnosis can help open more treatment options for families, and give them access to more services.

Autism is diagnosed four times more often in boys, with a diagnosis in girls often missed or overlooked until later in life. 

12-year-old Poss has now developed the tools and tactics to help her feel safe and secure in her environment, and live a happy life in the mainstream school system.

By working with therapists and with the support of her family, she’s learnt to self-regulate when everything is becoming too overwhelming.

But without a diagnosis, Renee says none of that would have been possible.

Obviously, every person with autism is going to be different, but our experience is that girls tend to mask the behaviours better than boys. They’re often great mimics, they tend to work hard to blend in with their peers.
Renee Bertolus, Mother

"But that can make autism harder to recognise and it’s not until they’re in a position that they’re really out of their depths that it all starts to unravel,” she says.

Members of the public are invited to review the draft and provide feedback, particularly those who will be directly impacted. You can find a copy of the guidelines, and information about how to provide feedback, here.

“The community has been requesting a national and consistent guideline for autism diagnosis for many years,” says Professor Andrew Whitehouse, Chief Research Officer, Autism CRC.

“The partnership between the Autism CRC and the NDIA has enabled the draft guideline to be developed through a comprehensive research process and in close consultation with the clinical and autistic community.”

Renee says the new guidelines would be a huge step forward, and anything to make diagnosing autism easier will have a widespread positive impact.

“There are amazing women on the spectrum who do brilliant things with their lives, but it’s so much harder without awareness and acceptance in the community; so, the more understanding and help there is, the better.”

She says she believes the autism community will get behind the new guidelines.

“When we see guidelines like this come out and the conversation play out in the media, it raises awareness, and can actually help people to become more supported in their environments. And that’s all anybody wants, really. So, there’s a lot of excitement around it."

Read more about Renee’s advice to parents of recently diagnosed autistic children: embracing disability, from parent’s who’ve been there.

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