Six-year-old James is a happy, affectionate, caring little brother who his mother says is very theatrical.
But he also has a learning difficulty and speech delay and often struggles to regulate his emotions, meaning he can display challenging behaviours at times.
His mother, part-time medical receptionist Vanessa Moore, has been seeking assistance from health professionals in Perth, where they live, for the past few years. Last year, upon the suggestion of a teacher, she put James on the public waitlist for an autism assessment in Western Australia.
James was then in pre-primary (the first year of full-time schooling in WA) and is now in Year 1. But by the time he is assessed, he could be in Year 2. James and other children like him in Australia can be on such waitlists for two years.
Ms Moore, 43, has tried going down the costly path of assessment via private practitioners, but so far has not been able to get an appointment or be put on a waitlist to see a paediatrician for an assessment.
"Something has to change if you can't even get in privately," she said.
If diagnosed with autism spectrum disorder (ASD), James' family may be eligible for funding for support services through the NDIS.
Additionally, only once assessed can his parents be given a clearer idea of the types of support services that may be able to assist James.
The stress of dealing with her son's challenges without the insight of a diagnosis has also had a detrimental impact on Ms Moore's mental health.
"I'm just wanting to be heard and taken seriously," she said.
I'm just wanting to be heard and taken seriously.- Vanessa Moore, Mother
Online support groups for parents of neurodivergent children in WA are full of posts complaining the books are closed at every clinic they ring.
A website and monthly e-newsletter called has been created by one mother of a child with health challenges to inform parents of which paediatric health professionals have openings for new clients. Some are looking to have their children assessed for autism or attention deficit hyperactivity disorder (ADHD), while others hope to find ongoing therapy or support for these and other conditions.
But the hub's most recent newsletter distributed at the end of March did not provide much hope. Instead, it said despite having contacted every paediatrician and child and adolescent psychiatrist in WA known to the group (and some interstate) none were taking bookings.
Perth Kids Hub was not able to provide any suggestions for those looking to find an available paediatrician in WA. Source: Supplied / aleishaorr
Going inter-state and international
When fellow Perth mother Teisha was unable to get an appointment or even be put on a waitlist with a paediatrician in WA for her five-year-old daughter Lillian, she turned her focus elsewhere.
Teisha shared a photo of her with Lillian smiling at the camera, but explained Lillian had previously been displaying aggressive behaviour at daycare to the point she was "unable to function in her everyday environment".
At home, she had become so sad and withdrawn she was being sick.
Teisha was able to get her daughter diagnosed, but not in her home state. Source: Supplied
Within three months, the paediatrician, as part of a multidisciplinary team, diagnosed Lillian with autism level 2 as well as ADHD.
Last year, the shortage of autism health professionals in WA made headlines after it was cited as the reason for NBL team Perth Wildcats losing its international coach Scott Morrison.
Morrison returned to his home country of Canada just one year into a three-year contract due to for their two-year-old son Max.
Max was diagnosed with autism in Canada within four weeks of their return.
How a child gets assessed for autism
In WA, a GP can refer a child to the Child Development Service (CDS) to be put on the public waitlist to see a paediatrician if there are signs they could be on the autism spectrum.
That paediatrician will determine whether an autism assessment is required and generally a multidisciplinary team of health professionals (made up of a psychologist, speech therapist and a paediatrician) will carry out the assessment.
The WA Government is currently holding a parliamentary inquiry into the CDS, called for by the opposition due to increased wait times.
The government would not provide SBS News with estimated wait times for children on the public list to see a paediatrician, but some families joining the list this year after being told the wait would be at least two years.
Autism Awareness Australia said across the country, a 12-month wait would be "the best-case scenario".
Going privately
Many parents turn to private practitioners in the hope of having their child assessed sooner, even if it means paying upwards of $4,000.
But appointments are hard to come by, with one in three Australian psychology practices saying their books were closed when .
In WA, the most difficult appointment to secure appears to be with a paediatrician. Numbers provided in in February showed the median wait time through the state's metropolitan CDS had increased to 17.8 months.
Shadow Minister for Early Childhood Education, Donna Faragher, described those wait times as "unacceptably high" and said she knew of many families "experiencing far longer wait times than the figures suggest".
Source: SBS News / Leon Wang
Autism Awareness Australia chief operating officer Elizabeth Sarian said "the demands versus the supply of services is well out of balance" across Australia. She said accessing a private paediatrician was much worse in rural and regional areas and it was disappointing that early intervention was not always occurring.
"The delay in diagnosis often leads to a delay in therapies and support services for a child, which we know is critical for best outcomes."
"In addition, the stress, both emotionally and financially, takes a toll on families."
Single clinician diagnosis
While other states have accepted single clinician diagnoses for autism in children for a number of years, WA health professionals have prided themselves on providing the 'gold standard' in diagnosis through a team consisting of a psychologist, speech therapist and a paediatrician.
Australia's released in 2018 allowed for single practitioner evaluation and diagnosis across the country (meaning a paediatrician would not always be required). Despite that, parents find it difficult to find a practitioner willing to do it.
A paediatrician is one of the three health professionals who are usually part of a team who can diagnose autism in Australia. Source: Getty / SDI Productions
Co-author of the recently released National Supporting Autistic Children Guideline, Andrew Whitehouse said long wait times for autism diagnoses were having a detrimental effect on families.
"It's almost like we've created systems that have magnified the stress of having a child who's developing differently rather than trying to alleviate that stress."
"We know with any neurodevelopmental condition, the earlier we can commence supporting the child and family, the better the outcomes."
We've created systems that have magnified the stress of having a child who's developing differently.- Andrew Whitehouse, National Supporting Autistic Children Guideline
Mr Whitehouse believes lack of a diagnosis should not be a barrier to therapy and support.
"The purpose of a diagnosis is to understand someone, to understand who they are, their behaviours, the challenges and strengths they have."
"What we need to do is take an honest look at the system and design it for 2023, not 1980."
Health and education
Another Perth mother, Jessica, said she was able to get an official diagnosis for her four-year-old daughter Olivia from a team comprising a psychologist and a speech pathologist. Olivia received a diagnosis of autism spectrum disorder levels 2 and 3 in January.
Jessica spent the school holidays doing practice runs to the kindergarten Olivia was due to start the new school year at, and when the first term began her daughter was supported by a special needs education assistant.
But within the first few weeks of school, Jessica was told the support would come to an end mid-year in June as the Department of Education WA had rejected the school's application to fund the assistant because a paediatrician had not been part of Olivia's diagnosis.
It "leaves us, and many other families, in limbo," Jessica said.
"It is, because of paediatrician wait times, a requirement that is near impossible to meet."
Jessica said she had called more than 50 privately operating paediatricians and the soonest she was told she could get in could be in two years, meaning her daughter would be without assistance throughout kindergarten and her first year of full-time schooling in pre-primary.
"This puts significant pressure on families who are needing support, as well as individual schools who need appropriate resources to support students with disabilities," she said.
Parents are going to great lengths to get their children seen by a paediatrician. Source: Getty / aldomurillo
It is not only education providers that have their own criteria for recognising diagnoses. Services including the NDIS, Disability Services Commission, and Centrelink use varying eligibility criteria.
Ms Moore said if the health system took greater consideration of parents' concerns, her son James would have been on the public wait list when she first spoke with her GP three years ago.
The GP referred the family to a paediatrician whose response, she said, was "let's just wait and see".
"We walked out of there wondering, where do we go from here?"
Ms Moore has also been seeking guidance about the possibility her son may also have ADHD, a condition .
"I've gone to a number of seminars and workshops to try to educate myself on autism and how everything works, but I still find it difficult," she said.
When navigating the process of diagnosis for one of her children about 15 years ago, Heidi Brandis, like many other parents, became overwhelmed, frustrated and confused.
"Everyone I called seemed to refer me to another agency and I went around and around in circles, not really knowing or understanding exactly what services we needed or how to access them," she said.
Ms Brandis began noting down any useful resources, services, funding and agencies she found while searching for help and after many years, put it together into a 'survival guide' to assist other families.
Since then she's updated and published the another four times and the document has become the go-to for WA parents with autistic children. The handbook is distributed by paediatricians, psychologists and therapists following a child's diagnosis, and by organisations supporting families of autistic children and young adults.
Ms Brandis is a former occupational therapist and now coordinates a number of Facebook support groups for parents of children with autism in Perth.
"The excessively long autism assessment wait times that continue now even 15 years later, meant children are not getting much-needed therapy and parents are not getting support, which often impacts on their own mental health," she said.
Long wait times are preventing children from accessing specialist therapy. Source: Getty / SDI Productions
She said her child could have been so much better supported had they been assessed earlier, rather than waiting more than 15 months.
"Their childhood could have been so much better as a result and their mental health so much better now."
A spokesperson for the WA Government said they "understand the important role these services play in child development and are committed to addressing the challenges facing the service in the context of global workforce shortages".
"Referrals to CDS have been trending upwards over the long-term, particularly over the past five years, leading to increased wait times for services," the spokesperson said.
"There has been a 40 per cent increase in the number of new children seen for assessment by a developmental paediatrician compared to 2020."
The spokesperson said an additional 14 speech pathologists and five clinical psychologists had been trained in recent years to help meet the growing demand.
'It's never too late'
Ms MacDermott from WAADF said while there is some thinking that autism is "the diagnosis of the day", the fact more people are talking about the condition meant people have a better understanding of it.
She said this was particularly true with girls and women because the traditional understanding of it was based on a male presentation.
"The pendulum goes from no awareness to hyper-awareness and, at some point, it comes back to a middle ground."
She said the need for more clinicians providing assessment services created a "conundrum".
"People are like, well, we just need more of them. [But] at the same time, it's also important that the diagnosis is accurate," she said.
Ms MacDermott said it was important parents understood it was never too late to get their child diagnosed, and that "the door never closes".
"[To think otherwise] creates enormous anxiety and fear, which then can really sidetrack people and consume them, when really they need all of that energy to continue living their life, parenting their children and having the best life that they can have."
World Autism Awareness Day is marked on 2 April.
For information about accessing support for autism contact Autism Connect on 1300 308 699.
Readers seeking support with mental health can contact Beyond Blue on 1300 22 4636. More information is available at . supports people from culturally and linguistically diverse backgrounds.
