The National Autism Strategy aims to support better access to diagnosis and support, but what will it look like in practice?
By Andrea Downey
It is not understating it to say early diagnosis of autism alongside access to early interventions can have a profound impact on a child’s development.
But referral delays and lengthy waitlists are having a combined impact on autism care across the country.
Waitlists to see a specialist can be more than a couple of years and some parents have reported feeling as though their GP – through no fault of their own – was unaware of how best to support them during the diagnosis process.
For Perth-based Stacey Green, her son Harry’s diagnosis was the key to unlocking a wealth of support that has seen him start pre-primary this year as a happy, sociable boy.
But that was not always the case and without early intervention, which Harry received through CliniKids at The Kids Research Institute Australia among others, his story would be different.
The experiences of the almost 300,000 people with autism across Australia vary and can heavily depend on their health practitioner’s understanding of autism, timely access to specialists – which differs between private and public services – and other support systems within education and communities.
Autistic people experience more barriers to healthcare than non-autistic people, they are 2.5 times more likely to experience depression, and they have a life expectancy of 20–36 years shorter than the general population.
A national approach
To address these stark numbers, the Federal Government has developed a seven-year National Autism Strategy which aims to create “a safe and inclusive society where all autistic people are supported and empowered to thrive”.
A National Roadmap to Improve the Health and Mental Health of Autistic People is also being developed and will provide a more in-depth look at the changes needed.
Until then, the strategy sets out key areas for consideration including better diagnosis, identification and assessment of autism.
GPs are often the first point of contact for people at the beginning of their diagnosis, but the strategy notes that often autistic people, their families and carers “can experience difficulties at all stages of the identification, assessment, and diagnosis process”.
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To mitigate this, the strategy commits to the development of standardised co-designed training and professional development materials to support those involved in the diagnosis of autism, and exploring ways to make diagnosis and assessment more affordable.
Consideration will also be given to early screening and developmental monitoring, and improved access to health and other professionals.
Professor Andrew Whitehouse, Director of Clinikids and Professor of Autism Research, says the strategy notes all the right things, but there are also large gaps.
“Things such as early diagnosis and high-quality support, education, housing, ageing – these are, when I speak to families, the most pressing issues they are talking about,” he told Medical Forum.
WA leading the way
While more must be done to improve care in this space, Western Australia is broadly seen as a national leader in autism care, with several experts in the field pointing to the State’s success in early intervention.
“If you were going to be in any place to have a child diagnosed with autism, or be autistic yourself, you’d choose WA. We really are doing things as well as anyone in the world, which is a huge pat on the back, but that’s not to say that we can’t do better,” Professor Whitehouse adds.
Autism Awareness Australia chief executive Nicole Rogerson says that WA is “without a doubt” ahead of some of the eastern states.
“Western Australia has always been seen as a leader in the early intervention space,” she told Medical Forum.
“WA knows how to do this, and I suspect it will be the first state that will find it easier to get diagnostic and early intervention supports back on track for small children.”
To name just some of the good work underway in WA, the Autism Association of Western Australia has delivered training to improve patient experience in emergency healthcare settings at Fiona Stanley Hospital and Perth Children’s Hospital.
The Association also has an ongoing partnership with Curtin University Oral Health Therapy Clinic, providing autism-specific training to oral health students in their final year of training.
CliniKids is also renowned for its work in this space, with its Early Start Denver Model therapy and JASPER – Joint Attention, Symbolic Play, Engagement and Regulation therapy – providing early intervention support for children as young as 12 months.
WA Health’s Child and Adolescent Health Service has introduced community hubs in Midland and Murdoch to provide wraparound mental health and development services.
A spokesperson said the department was preparing to implement the Strategy’s recommendations, including improved access to clinical services and supports.
Support before diagnosis
While positive work in this space should be applauded, WA is not immune to the issues seen nation-wide. Workforce shortages across the board are resulting in lengthy waitlists and difficulty accessing specialists.
“One of the things we do know is that we have large waiting lists to receive assessment services, which means kids can be on a waitlist for two to three years before they are able to access these services,” Professor Whitehouse says.
“The demand for services has outstripped the supply of clinicians multiple fold, and we’re at the point now where it’s difficult to see how we could ever train the amount of clinicians we would require to meet the demand for assessment services.
“For many people, achieving a diagnosis has been the gateway to getting support, which is why waitlists have been driven so high. We all realise the flaw in that, so we need systems to provide services to kids based on their needs and their level of functional impact, not necessarily the presence or absence of a diagnosis.”
Joan McKenna Kerr, chief executive of AAWA, said the importance of a diagnosis cannot be understated as it provides a “shorthand to others on how best to support that person”.
“We know that when you work with people with autism you need structure, you need routine, you need predictability, you know they have sensory difficulties,” she tells Medical Forum.
“If you manage those sensory difficulties, you can manage their anxiety. You know that if you present information in a particular way then that child will cope better than if you provide it in a more conventional way.”
Barriers to diagnosis
One area the strategy aims to improve is training and professional development for those involved in the diagnosis of autism. Ms Rogerson says reluctance to refer to specialists too early can be a barrier to care.
“If the warning signs are there, you’re not doing anyone a favour by putting it off. We know that intervention is better when it’s early,” she says.
“If a GP is not sure, referring them on to have an assessment or to see somebody that will know a bit more is critical.”
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While a child is waiting for a formal diagnosis, referral to support services should also be considered.
“Don’t wait, if you have an inkling then it’s worth investigating that straight away. Often the earlier we can identify kids and provide them with the support they need the better,” Professor Whitehouse adds.
“Diagnosis is an important step, but it doesn’t necessarily need to be the first step. Your referral to a speech pathologist, not for an assessment or a diagnosis but for support, can actually be more important than that diagnosis.
“If we can empower primary practitioners within the bounds and confines in which they work, then they have the ability to change the lifelong trajectories of autistic kids by identifying differences early on, by understanding where to refer and who families need to speak to. This is the stuff that changes lives.
“Just like how we’re starting to embed knowledge of autism and how to support autistic kids within teacher training, this absolutely has to be a core part of GP training.”
Stacey Green suspected her son Harry might have autism when he was just six months old. With a brother who received a late diagnosis at 26, she was aware of the signs and knew the importance of early intervention.
While she knew all children develop differently, she also knew she wanted health practitioners to take her concerns seriously.
“There were little milestones he wasn’t quite hitting – my nephew is the same age, and it made it really obvious when Harry wasn’t hitting those milestones,” she told Medical Forum.
“He was avoiding eye contact, he had started developing ‘mum’ and ‘dad’, but really that was it language wise, he wasn’t progressing in his speech.
“In the first six months of my own feelings, I just had it in the back of my mind that it could be autism… but I felt quite brushed off.”
When Harry was around 12 months old Stacey knew something was not right and began her own research into the supports her son might need. She reached out to AAWA for support and visited her family GP.
But that’s where the challenge began. Not only did Stacey feel she had to advocate for her son, she also struggled to get an appointment with a specialist and was told there was a two-and-a-half-year wait to see a paediatrician.
“I remember when we were starting that process, we knew we had to see a speech therapist, psychologist and a paediatrician. It would have been when Harry was about 14 months, so we’d been to see the GP, done some reading and got more information,” she says.
“I sat with a list of about 30 paediatricians and just phoned one after the other to be told I’d have to call back at the end of the year, or that waitlists were full. At that point I remember just sitting on the bathroom floor crying.
“From a mum’s point of view, it was quite a frustrating process because we knew we needed to see these three specific healthcare professionals to get the diagnosis, but we couldn’t even get that.”
Stacey also visited her GP three times before those referrals were made.
“I never felt judged or anything like that, I just think there was more of a focus on speech delay. There were a couple of times when we were told children develop differently.
“I definitely had to advocate for Harry a lot more than I thought I would in those sessions.”
Stacey and her husband chose to go down the private route, which meant they could get Harry to specialists sooner.
He began weekly occupational therapy in July 2021. He also took part in Early Start Denver Model therapy and JASPER therapy through CliniKids and sees a speech therapist. He started pre-primary this year and is enjoying being at school.
While Harry was seeing specialists before his diagnosis, the eventual diagnosis was life changing. For the now happy, sociable five-year-old, diagnosis and early intervention was everything.
“If we hadn’t had that intervention, where would he be now? He went from being non-verbal to now using four-to-five-word sentences. What we saw from Harry was a really frustrated little boy and, through that early intervention, he’s turned into this really sociable, happy kid.
“Early intervention, for him, has been life changing because he has that ability to interact with the communities around him.”
If there’s one thing Stacey wants healthcare professionals to consider, it is that a parent’s instincts should not be overlooked – and that providing relevant information can make a difference.
“A mother’s instinct can sometimes hold as much weight to it. It’s about really listening and hearing when someone is coming in with those concerns,” she says.
“I know that GPs are already doing this, but I think supporting parents and giving them the information that’s relevant to them, and the right resources to give them a really clear understanding of the journey ahead of them, would be really helpful.”
Time spent with a GP can also create an unnecessary barrier. Through their work with families, the AAWA has found longer consultations help empower patients and allow them time to understand their care.
“When you know an autistic person has booked an appointment, make sure you diary in a longer consultation,” Ms McKenna Kerr says.
Diagnostic overshadowing
“The one thing that people with autism still do experience is diagnostic overshadowing, meaning that if you have autism then everything is explained through autism rather than considering other issues.
“For example, we can still experience a situation where someone presents with a behavioural change to a GP and it can be immediately put down to their autism, whereas there are a number of things that need to be considered in regards to this population.
“We know they have higher rates of anxiety and depression. All behavioural change is not explained by autism, there are several things we need to look at when someone presents with qualitative changes.”
Professor Whitehouse is hopeful that better understanding of autism and changes in care, like earlier referral to specialists, will go some way to improving the health outcomes of those with autism.
“There is nothing inherent in the biology of autistic people that means they are more prone to illness and disease,” he says.
“What the statistics indicate is that those social determinants of health are being affected – the lifestyle factors ranging from what people eat, all the way through to social connection and loneliness.
“It is also around health seeking behaviour, do we have systems that encourage and embrace autistic people when they do seek out health practitioners?”
For now, it is a case of wait and see whether the National Autism Strategy delivers change. The devil will be in the detail of the National Roadmap to Improve the Health and Mental Health of Autistic People but, as is so often the case in healthcare, it will need to be backed by workforce investment and practitioner training.
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