Autism Assessments

Thank you, Madam Speaker. I am pleased to bring this motion before the Assembly today. ‘Autism spectrum disorder … is a persistent developmental disorder, characterised by symptoms evident from early childhood. These symptoms include difficulty in social interaction, restricted or repetitive patterns of behaviour[,] and impaired communication skills’.[1] According to the 2018 Disability, Ageing and Carers Survey conducted by the ABS, there were more than 205,000 Australians with autism – 1.3 per cent of all males and 0.4 per cent of all females.[2]

Whilst autism is a lifelong condition, ‘the social, communication and sensory deficits that some experience may be remediated with the use of intervention therapies and structured support’.[3] The National Disability Insurance Scheme provides tailored funding for personalised therapies and supports for anyone with autism who experiences reduced capacity in communication, social interaction, mobility, learning, and/or self-care.[4] For school-age children, educational supports are also available.

Unsurprisingly, experts acknowledge that the earlier these therapies and supports can be put in place, the better. ‘That’s because the younger we are, the more adaptable our brains are … In the case of autism, it’s believed that intensive therapy early on may encourage the young brain to reroute itself around faulty neural pathways’.[5] Early intervention can teach children with milder forms of autism ‘how to relate better to others and potentially lessen their sense of alienation throughout life. Even the most severely affected children, who may never develop the ability to speak, can possibly learn alternate ways of communicating’.[6]

Research clearly shows that ‘children who receive early intervention demonstrate improved cognitive, developmental and adaptive functioning, enhanced language and social skills as well as a decrease in symptom severity, cognitive impairment, and maladaptive behaviours as compared to children who are treated later’.[7] In some cases, early interventions may even eliminate the need for autism-specific educational supports when a child starts school.[8] In contrast, undetected autism has been linked to poor mental health in adolescence, including depression, anxiety and even psychosis.[9]

In every case, however, access to intervention therapies and structured supports is dependent on first having received a professional diagnosis. There are two pathways for accessing an autism assessment. Private assessments are available for families who can afford them. In the ACT, this will cost approximately $2,000. If the child being assessed is age 12 or younger, Medicare will pay about $340 of this. In addition, some private health insurance with specific kinds of extras may help cover the cost of a private assessment, making it even more affordable. Waiting times for a private assessment are typically shorter.

Families who are not in a position to access private autism assessments may access a public one through the territory’s Child Development Service or CDS. There is no cost for this service, but the wait can be long. During estimates hearings in February, Minister Berry noted that Canberra families were waiting ‘eight to ten months’ for an assessment. Families unwilling to wait this long are referred to private providers by the CDS. But for families who cannot afford the private option, a public assessment is an essential service, and I am grateful that this option exists, despite the wait.

In the ACT, however, a child must be referred to the CDS before the age of 12 to qualify for a public autism assessment. When I asked about this age limit in budget estimates hearings last month, Minister Berry’s response was to assure me that the goal is to detect and diagnose autism early. I get that. It’s absolutely the right goal. As I noted above, early diagnosis allows for early interventions, and early interventions are very clearly linked to better lifelong outcomes.[10] Ideally, detection should be occurring before a child begins school at the latest.

But the question remains: What happens when this goal is not achieved? In other words, what happens when autism spectrum disorder is not picked up in a child before the age of 12? I asked this question of the minister as part of hearings and was given a simple answer, quote: ‘The CDS refers children 12 years and older to private psychologists’.[11]

This is fine for families who can afford a $2,000 private assessment without any Medicare rebate and possibly with assistance from private health cover, but what happens to families with children too old for public autism assessments who cannot afford to pay a private psychologist? The answer from Autism Spectrum Australia is that sometimes these families just do the best they can without a diagnosis and the interventions that follow that, with much poorer life outcomes for the person involved.[12]

Another important question is how many families in Canberra fall into this category. I asked the minister this question during hearings last month. In response, I was told that the ACT Government has no data on this. I predicted this response and so also asked how many school students in Canberra above the age of 12 have provided a new diagnosis of autism to their schools. Again, I was told that the ACT Government does not track this.

In summary, the Labor-Greens government has a goal of detecting autism early, with an upper limit of age 12. This is a fine goal. Early detection can dramatically improve life outcomes. At the same time, the government knows that this is not always happening because, as the minister informed me last month, the CDS is referring families with children age 12 and above to private psychologists for assessment. What the government does not know is how many families are in this situation, or why – and therefore the government also does not know what could be done differently to improve the early detection of autism spectrum disorder in the territory.

This is a textbook example, Madam Speaker, of ignorance being bliss. It allows the minister to say that everything is fine because she has no data at hand to tell her otherwise. In stark contrast, stakeholders have informed me not only that many cases of autism are not detected early but that the number of low-income families seeking autism assessments for children age 12 and above has recently spiked in the ACT, reaching levels never seen before.

Research identifies several factors that may contribute to delayed diagnosis of autism spectrum disorder. For a variety of possible reasons – some biological and some cultural – autism is regularly diagnosed at a ‘significantly higher age’ in females.[13] Children from migrant and refugee backgrounds often experience delayed diagnosis as well, with symptoms masked by learning to speak English as a second language or misinterpreted as cultural differences.[14] Similarly, the presence of comorbid disorders, such as ADHD, OCD, or social anxiety disorder, can leave the underlying autism undetected until later.[15] Research by psychologists Shilpa Aggarwal and Beth Angus found that, in Australia, one primary factor is that symptoms are regularly not picked up by school systems or primary care physicians, even after concerns are raised by parents.[16] In other cases, parents are unaware of symptoms or what they mean, especially in ‘high-functioning’ or ‘mild’ cases, and sometimes such cases don’t manifest till later as well.[17]

The reality of delayed diagnosis requires two different approaches, both addressed directly in this motion. First, acknowledge that girls, children with migrant and refugee backgrounds, and others are statistically likely to experience late diagnosis and then have mechanisms in place to support that diagnosis to occur, especially for families who cannot afford a private assessment. This is the approach taken by several Australian jurisdictions.

Tasmania provides free public assessments to children and young people below the age of 18.

Western Australia provides free public assessments to young people under the age of 16 in the Perth region and under the age of 18 in the rest of the state. In addition to this, the West Australian government provides grants that allow a limited number of residents to access free private assessments up to the age of 30.

In Queensland, a child can be referred to that state’s Child Development Program if under 9 years of age.

Otherwise, referral is made to local general paediatric services, which accept new patients up to the age of 16.

South Australia takes a different approach and provides government-subsidised autism assessments through a private provider. These assessments cost $1,000 for children and young people under the age of 18, with those under the age of 13 being eligible for a Medicare rebate. Assessments for those age 18 and over cost $600.

In the Northern Territory, children can be referred to the Children’s Development Team for assessment, but autism assessments for adolescents can also be performed by school psychologists.

I am calling on the ACT Government to do something similar: extend access for public autism assessments to young people under the age of 18. The main goal of this change is to support the low-income families in Canberra who need an assessment for an older child and simply cannot afford one. Stakeholders have shared with me an estimate that about 50 families each year find themselves in this situation. Clearly, there will be some cost involved. I was told as part of budget estimates hearings that the average cost for a public autism assessment is between $1,900 and $2,200.[18] If we take the top figure and multiply it by 50 young people, we arrive at $110,000 per annum.

I remind those opposite, however, that there are also costs associated with delayed diagnosis. As in so many cases, early intervention can be much, much cheaper than dealing with the complexity of late intervention. Aggarwal and Angus in fact found that delayed assessment of those with autism spectrum disorder can result in ‘huge costs’, not only to the people with autism and their families but also to the public systems that serve them.[19]

Extending access to public autism assessments will also accomplish something else – something quite important. It will give us the data we need to improve early detection in this territory. As Australian researchers have found, and I quote, ‘In order to develop targeted education strategies and policy aimed at facilitating early diagnosis in a particular community, it is important to understand what factors are associated with age of diagnosis in that community and where any delays are occurring in the pathway to diagnosis for children’.[20] The only way to obtain such data is to capture those families that experience delayed diagnosis and start to analyse what went wrong.

Madam Speaker, there will inevitably always been some cases of autism spectrum disorder that experience delayed diagnosis. But we can increase the likelihood of early diagnosis by taking steps to address any failings we discover in our existing systems. That requires data. But as we obtain data, I likewise call on the ACT Government to use what we learn as it follows the clear recommendations of Australian researchers Aggarwal, Angus, Gibbs, Aldridge, Sburlati, Chandler, Smith, Cheng, and others. This includes improving what is already being done to increase awareness amongst both parents and professionals.[21] It will also include fixing any other gaps that the data may reveal.

Madam Speaker, on behalf of Canberra families and those who serve them, I commend this motion to the Assembly.

[1] AIHW, ‘Autism in Australia’, web report, 5 Apr. 2017. [2] ABS, ‘Disability, Ageing and Carers, Australia: Summary of Findings’ (2018), 24 Oct. 2019. [3] Ibid. [4] https://www.montrose.org.au/ndis/ndis-supports-can-get-children-autism/ [5] Peg Rosen, ‘Early Autism Diagnosis: What Parents Need to Know’, Parents, 11 June 2015, p. 2/6. [6] Ibid., p. 3/6. [7] Vicki Gibbs et al., ‘Missed Opportunities: An Investigation of Pathways to Autism Diagnosis in Australia’, Research in Autism Disorders, 57 (2019), pp. 55–56. [8] Rosen, ‘Early Autism Diagnosis’, p. 2/6. [9] Shilpa Aggarwal and Beth Angus, ‘Misdiagnosis versus Missed Diagnosis: Diagnosing Autism Spectrum Disorder in Adolescents’, Australasian Psychiatry, 23:2 (2015), pp. 122–23. [10] Ibid., p. 122. [11] QON No. 5, Standing Committee on Education and Community Inclusion, Inquiry into ACT Budget 2021–22, p. 2/3. [12] https://www.autismspectrum.org.au/blog/the-impact-of-an-early-diagnosis. [13] Camilla Gesi et al., ‘Gender Differences in Misdiagnosis and Delayed Diagnosis among Adults with Autism Spectrum Disorder with No Language or Intellectual Disability’, Brain Science, 11:912, p. 1/9. Lisa Jo Rudy, ‘5 Reasons Symptoms of High-Functioning Autism Can be Missed’, VeryWell, 19 Aug. 2021. Beth Arky, ‘Why Many Autistic Girls Are Overlooked’, Child Mind Institute. [14] Rudy, ‘5 Reasons’. [15] Ibid. [16] Aggarwal and Angus, ‘Misdiagnosis versus Missed Diagnosis’, p. 123. [17] ‘Late Autism Diagnosis: Older Children and Teenagers’, Raising Children: the Australian Parenting Website. [18] QON No. 5, Standing Committee on Education and Community Inclusion, Inquiry into ACT Budget 2021–22, p. 2/3. [19] Aggarwal and Angus, ‘Misdiagnosis versus Missed Diagnosis’, p. 122. [20] Gibbs et al., ‘Missed Opportunities’, pp. 56–57. [21] Ibid., p. 61. Aggarwal and Angus, ‘Misdiagnosis versus Missed Diagnosis’, p. 123.