10.1
This chapter briefly outlines the process of obtaining an autism diagnosis. It then goes on to discuss the importance of early diagnosis, as well as identified challenges in relation to consistent, timely and best practice autism diagnoses.
Overview
10.2
As described in Chapter 2, diagnosis of autism is made on the basis of developmental assessments and behavioural observations against the American Psychiatric Association's Diagnostic and statistical manual of mental disorders (5th edition)—commonly referred to as the DSM-5.
10.3
Autism can be diagnosed by either a single health professional or a multidisciplinary team of health professionals. A multidisciplinary team may be necessary where the symptoms are less clear or there are co-occurring conditions that make diagnosis more difficult. Multidisciplinary approaches to assessments are also recommended as best practice.
10.4
Autism diagnoses can be made in either the public or private health system. The process of obtaining a diagnosis usually begins with a referral from a general practitioner to a health professional who is qualified to make the diagnosis—for example, a psychologist, psychiatrist or paediatrician. Referrals can also be made directly to publicly funded assessment services in some cases.
10.5
Publicly funded assessment services are generally free and usually consist of multi-disciplinary teams (or individual clinicians) based in hospitals or other publicly funded health services.
10.6
Private assessments are offered on a fee-for-service basis. For children under 13 years of age, there are Medicare rebates that help cover the cost of an assessment by a paediatrician or child psychiatrist, as well as assessments by up to four allied health professionals (including psychologists, speech pathologists, occupational therapists, audiologists, optometrists and physiotherapists).
The importance of early diagnosis
10.7
Currently, the average age of diagnosis in children in Australia is about 3–4 years of age, with the most frequent age for diagnosis being 5.9 years. This is despite research showing that diagnosis is possible as early as 18–24 months of age and that early diagnosis leads to better educational, social and economic outcomes for autistic people.
10.8
For example, studies by La Trobe University's Olga Tennison Autism Research Centre (OTARC) have shown that children diagnosed before the age of two are less likely to receive a secondary diagnosis of intellectual disability and more likely to be in a mainstream school than children diagnosed later (see Table 10.1). Early diagnosis also reduces (by 30 per cent) the ongoing support required by school age children, as well as lowering overall support costs for families and the wider community.
Table 10.1: Effects of early diagnosis (* = IQ <70 at school age)
|
|
|
|
8 per cent have an intellectual disability*
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24 per cent have an intellectual disability*
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77 per cent in mainstream schools
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57 per cent in mainstream schools
|
Source: La Trobe University – the Olga Tennison Autism Research Centre (OTARC), Submission 55, p. 4.
10.9
Despite this, OTARC revealed that in Australia:
less than three per cent of children are diagnosed by two years of age; and
less than 20 per cent of children are diagnosed by three years of age.
10.10
According to Autism Spectrum Australia (Aspect), diagnosis is likely to occur even later for 'females, milder presentations, those living in regional areas, and those who also have other conditions or developmental concerns'.
10.11
While emphasising the importance of early diagnosis, the Australian Autism Alliance (the Autism Alliance) observed that diagnosis at any age provides benefits. As a result, access to diagnosis remains important right across the lifespan. For example, without diagnosis, older children and adults may be unable to access appropriate supports, including via the National Disability Insurance Scheme (NDIS). Diagnosis at an older age can also be important for autistic people's health and wellbeing. Professor Sandra Jones, Australian Catholic University, pointed out that for adults:
…diagnosis is important to mental and physical health, as well as social and economic outcomes as it helps adults understand their needs and explain them to others, as well as dealing with being 'different' or feeling inadequate.
10.12
The Autistic Realm Australia (TARA) concurred and observed that struggling 'with a sense of our difference, but without any understanding of why' can adversely an individual's ability to 'build meaningful and satisfying lives'.
Challenges to obtaining a consistent, timely and best-practice diagnosis
10.13
Multiple stakeholders observed significant delays in obtaining an autism diagnosis. For example, Speech Pathology Australia (SPA) noted that while best practice guidelines recommend a waiting period of no longer than three months, the median wait time for an assessment in the public system is 16 weeks (within a range of 2–108 weeks).
10.14
Other submitters suggested that waiting periods could be even longer. For instance, Monash University contended that children wait a minimum of six months—but typically longer—for a formal assessment. In addition, the Australian Medical Association (AMA) reported that a survey of parents and carers revealed that 34 per cent waited over a year for a diagnosis, and almost 20 per cent waited for more than two years.
10.15
For those in regional and remote areas, limited access to diagnostic services can further exacerbate these waiting periods.
10.16
In response, stakeholders highlighted the role that a National Autism Strategy could play to set out actions to improve access to diagnosis and reduce waiting times. Some, such as the Autism Alliance, advocated for a waiting period target of three months, as well as regular reporting to monitor progress.
10.17
Overall, the committee heard that consistent, timely and best-practice diagnosis is hampered by a combination of factors, including:
the complexity of diagnosis;
inconsistent approaches to diagnosis;
the availability of diagnostic services;
the cost of diagnostic services; and
a lack of autism awareness and understanding.
Complexity of diagnosis
10.18
Various stakeholders highlighted the complexity involved in providing an autism diagnosis and the heavy reliance on the expertise and experience of the professionals involved.
10.19
For example, Autism Aspergers Advocacy Australia (A4) noted that in the absence of a biological marker, diagnosis relies on a 'subjective interpretation of a person's behaviour'. Likewise, CliniKids observed that diagnosing autism is 'a "best estimate" clinical judgement based on the behavioural presentation of the individual'. While CliniKids argued that diagnostic manuals provide 'clear behavioural criteria for diagnoses', the breadth of autism symptoms and their overlap with other developmental disorders means that 'the appraisal of individual behaviours is an inherently subjective task that relies heavily on clinician experience and skill'.
10.20
Monash University also emphasised the importance of 'professional judgement and clinical experience', particularly as assessment tools are not reliable enough to form the sole basis of an autism diagnosis.
10.21
Other stakeholders, such as SPA, also pointed to lack of precision in diagnosis when someone may have autism and co-occurring mental health conditions.
Inconsistent approaches to diagnosis
10.22
According to the Royal Australasian College of Physicians (RACP), the task of providing accurate autism diagnoses in Australia is further complicated by significant variability between states and territories in relation to who can diagnose autism. It noted that:
While some states require an [autism] diagnosis to be made through consensus of an experienced multidisciplinary assessment team of a paediatrician/psychiatrist, psychologist and speech pathologists, other states have less stringent criteria.
10.23
SPA highlighted the importance of multidisciplinary diagnostic teams by explaining the role that speech pathologists play:
An important role of a speech pathologist … is the differential diagnosis of autism and other communication related conditions … In addition, the speech pathologist will assist the multidisciplinary team to decide if the person's communication profile is more consistent with a description of intellectual disability, trauma, anxiety, or attention deficit disorder, or autism in conjunction with one or more of these other conditions.
10.24
In addition to variability across state borders, differences can even occur within individual states and territories. For example, Mrs Mitzi Polacsek, Marymead Autism Centre, asserted that while the Australian Capital Territory Child Development Service follows the recommended multidisciplinary approach, this is not necessarily the case in the private sector:
The way the Child Development Service do diagnoses is the recommended approach. They use a multidisciplinary approach. However, since many parents don't want to wait that long, they go through the private system with a private psychologist, and that's just the one psychologist. That's not the best way, but it can get them the diagnosis that they need for support.
10.25
According to Early Start Australia (ESA), the differences in practice also extend to the type of assessments administered as part of the diagnostic process.
10.26
The inconsistency in process appears to be reflected in the varying proportions of autistic people across states and territories (see Figure 10.1).
10.27
Stakeholders such as the Cooperative Research Centre for Living with Autism (Autism CRC) and the National Disability Insurance Agency (NDIA) also noted that the variability in diagnostic approach means that some fall short of best practice.
10.28
According to the Autism CRC, these inconsistencies cause 'much confusion, time and resource wastage, frustration, and entrenchment of disability'. This view was echoed by the Autism Alliance which asserted that inconsistent practices create 'inequities, inefficiencies, confusion and distress among those seeking assessment and diagnosis'. This was reflected in the experience of one parent who described the pathway to diagnosis as 'complex and opaque' and advocated for action to make diagnosis easier. This was supported by St Vincent's Health Australia which called for clear and well-publicised pathways to diagnosis.
10.29
In addition, Aspect noted that these differences can result in the need for 'unnecessary repeat assessments'. For example, this may occur when a diagnosis made in one state is not accepted in another state, or a diagnosis made in the health system is not recognised in the education system.
10.30
In response to the aforementioned issues, the Autism CRC, in collaboration with the NDIA, developed the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia (the National Guideline). The National Guideline was released in 2018 after 24 months of development and aims to provide a standardised and consistent clinical process for the assessment and diagnosis of autism in Australia.
10.31
According to CliniKids, the National Guideline provides a 'clear, evidence-based process for diagnosing autism in a manner that is accurate, timely and acceptable to families'. It is also able to be integrated into exiting health, education, and disability systems at both the Commonwealth and state levels.
10.32
However, uptake of the National Guideline has been uneven. For example, while Professor Andrew Whitehouse, Research Strategy Director of the Autism CRC, described the National Guideline as 'amongst the first things of great substance that the whole sector unanimously agrees upon', Aspect noted that it had 'not been adopted broadly at this stage, particularly in the private sector'. Likewise, while the Autism CRC observed adoption of the National Guideline at the 'grass roots level', it recognised that the benefits of the new approach will only be realised through 'consistent, national implementation' in practice across the health, disability and education sectors.
10.33
Accordingly, a number of stakeholders called for a focus on implementing the National Guideline. This included the Autism Alliance which proposed that use of the National Guideline should be mandatory.
10.34
Other submitters advocated for a funded strategy to implement the National Guideline. For example, the RACP proposed that the development of a 'robust, fully funded strategy' for implementation, supported by a clinical reference group with experience in diagnosing autism, would:
…ensure that all Australians can receive the best evidenced diagnostic practices, regardless of their age or location, and make informed decisions about next steps.
10.35
The Autism Alliance also observed that consistent implementation of the National Guideline could also play a role in reducing waiting times by freeing up diagnostic capacity in the system:
…the guidelines will deliver cost savings by rationalising assessment requirements and funding mechanisms across service systems – including health, disability and education. This will reduce duplication and the frustrating need for multiple assessments across systems.
10.36
In response, the Department of Social Services, Department of Education, Skills and Employment, and Department of Health (the departments) noted that they had been working with the NDIA to drive uptake of the National Guideline. While recognising that implementation would take time, the departments indicated that, as an initial step, $194 000 had been provided to the Autism CRC to develop 'educational resources targeted at clinicians, service providers, people with autism and their families and carers'.
10.37
While funded education activities were seen as important, more than one stakeholder argued that the most important driver of uptake would be reform of the Medicare Benefits Schedule (MBS) items related to autism diagnosis. For example, CliniKids explained that widespread use of the National Guideline is unlikely until there are appropriate funding mechanisms to support its use:
Currently, there are only a few items on the Medicare Benefit Scheme relevant to autism diagnosis, and these have limited funding to support a rigorous diagnostic procedure. This limited funding can promote sub-optimal clinical practices, which has an impact on the quality of care that families receive, and can leave families in excess of $1000 out of pocket…
10.38
Professor Andrew Whitehouse, Autism CRC, concurred and noted that the Commonwealth government's 'significant efforts' to build capacity within the medical profession would hit a roadblock without funding to support changes in clinical practice:
We can build all the capacity we want, but if there is no funding—Medicare funding or other funding mechanisms—that supports the clinical activities then people on the ground will take shortcuts. That's the reality of a hand-to-mouth existence of disability service provision.
Availability of diagnostic services
10.39
A lack of available services was cited as another key reason for delayed diagnosis, with stakeholders noting the long wait time for a diagnosis in the public sector. As one submitter noted, the delay often occurs at time when early intervention could make the greatest difference to a child's outcomes:
The public waitlist is often up to a two year wait, which for any child is an extremely long time, but for a child under seven years old in the prime early intervention years, two years can mean the difference between accessing early intervention therapy and not.
10.40
While wait times were generally much shorter in the private sector, some stakeholders noted that this varied by location. For example, ESA noted that parents in the Northern Territory were waiting three to six months for private and not-for-profit services. Similarly, there were reports of diagnosis in the private system taking more than 11 months due to long waitlists for professionals in certain locations.
10.41
The committee heard that the lack of available services related largely to workforce shortages, including a limited number of paediatricians, psychiatrists, and clinical psychologists who specialise in autism.
10.42
Stakeholders also noted a shortage of services for adult diagnosis (with most services focused on children), as well as a lack of easily accessible avenues for assessment. For instance, Professor Adam Guastella, Chief Clinical Adviser and Founder of ND Australia, noted that many adults don't know where to get a diagnosis. He also argued there should be a greater focus on building assessment opportunities into existing service offerings:
It has to be something that's easy for people to go in and out of, in terms of the assessment process. Who delivers it? Where is it delivered? There's a role for … maternal clinics but also for early childcare settings. … sometimes it comes down to simple things like not being able to access the clinic, so it really is about trying to integrate it into services that families currently access.
10.43
More than one submitter pointed out that issues of service availability were exacerbated for those living in regional and remote locations.
10.44
In response, a number of stakeholders called for action to increase the numbers of clinicians and other professionals working in the field of autism diagnosis. To this end, the AMA recommended that governments work with medical colleges and professional bodies to ensure that the supply of relevant health professionals is able to meet the demand for timely diagnosis.
10.45
Other submitters suggested expanding the range of health professionals who can undertake Medicare-rebated autism assessments to include nurse practitioners and allied health professionals.
10.46
Stakeholders also raised the need for a specific focus on improving the accessibility of diagnosis services adults and those in regional and remote areas. This could include actions such as expanding telehealth services, providing assessment clinics in regional areas, and providing clear pathways to diagnosis for adults seeking an autism diagnosis.
Cost of diagnostic services
10.47
Cost was identified by stakeholders as another significant impediment to timely diagnosis. According to the results of an Autism Alliance survey, two-thirds of autistic adults and over one third of parents and carers identified cost as a barrier to seeking diagnosis. In terms of costs, 40 per cent reported paying over $1000, with out-of-pocket costs reaching as high as $3000.
10.48
This appeared to align with evidence provided by SPA that suggested the cost of private assessments could be as high as $2750, while the total Medicare rebate for those assessments could be as low as $340. See Box 10.1 for further information on relevant MBS items.
Box 10.1: Autism diagnosis: Medicare Benefits Schedule (MBS) items
There are currently two Medicare items that subsidise consultant paediatricians (item 135) or psychiatrists (item 289) to provide diagnosis of autism for children under 13 years of age (on referral from another medical practitioner). The applicable Medicare Schedule Fee for these items is $278.75, while the benefit amounts are $209.10 (75 per cent benefit) and $236.95 (85 per cent benefit).
These items are for assessment, diagnosis and creation of a treatment and management plan. This can include patient referral for MBS subsidised allied health assessment services (items 82000–82030). A maximum of 4 allied health assessment services are subsidised in total. The applicable Medicare Schedule Fees and benefits for these items are:
82000 (psychology) – $103.80 (fee), $88.25 (85 per cent benefit);
82005 (speech pathology) – $91.50 (fee), $77.80 (85 per cent benefit);
82010 (occupational therapy) – $91.50 (fee), $77.80 (85 per cent benefit); and
82030 (audiology, optometry, orthoptic or physiotherapy) – $91.50 (fee), $77.80 (85 per cent benefit).
The Medicare rebates cover a portion of the fee for the service, although providers may choose to bulk bill.
Source: Joint Submission from the Department of Social Services, Department of Education, Skills and Employment, and Department of Health, Submission 53, p. 11; Australian Government Department of Health, MBS Online, www9.health.gov.au/mbs/search.cfm (accessed 22 November 2021).
10.49
Multiple stakeholders observed that the high cost of diagnosis has a disproportionate effect on lower socioeconomic households. Mrs Grace Fava OAM explained the impact on clients of Autism Advisory and Support Services:
Because of the low socioeconomic capacity of a lot of our families they have to go through the health system in order to access a diagnosis. You're looking at a six to 12 month wait for a diagnostic assessment. For a lot of children who have fallen under the radar that is a little bit late. They're at school or are much older.
10.50
As noted by the Autism Alliance, this creates 'a divide between those who can afford timely private assessments and diagnoses, and those who are forced to wait in the log-jammed public system'. This divide was recognised by many families:
We were fortunate; we could afford to pay over $1000 for a private assessment and had an appointment and diagnosis within three months. With the diagnosis reports we were able to access NDIS and early intervention. I know other families who can't afford to pay this kind of money, who have been waiting literally a year or more for an appointment … It's totally unfair that your ability to access a timely diagnosis depends on your ability to pay. – Rachel, 41.
10.51
Submitters also noted the additional costs involved in seeking a diagnosis for older children or adults given the Medicare rebates for diagnosis are only available for children under the age of 13.
10.52
In line with these concerns, stakeholders called for action to reduce the cost of diagnosis. For example, the Office of the Public Advocate Victoria advocated for free access to diagnostic professionals, while others such as the Autism Alliance suggested extending Medicare rebates to cover the full cost of diagnosis, including adult diagnosis.
10.53
In response, the relevant Commonwealth departments pointed to the work of the MBS Review Taskforce which—at the time of its submission—was considering a number of draft recommendations by the Allied Health Reference Group (AHRG) to improve access to complex allied health assessments and encourage multidisciplinary planning under the MBS.
10.54
In June 2020, the MBS Review Taskforce endorsed a number of the draft AHRG recommendations, including:
lifting the age limit on autism related items from 13 to 25 years;
increasing the number of allied health assessment appointments from four per lifetime to eight per lifetime (with a review by the referring practitioner after the first four assessments);
allowing up to two allied health assessment items to be used for case conferencing for children with a potential autism diagnosis; and
allowing inter-disciplinary referral between allied health professionals during the assessment phase (in consultation and agreement with, but without a physical attendance by, the original referring practitioner).
10.55
To date, it appears that only one of the above recommendations has been implemented. In November 2021, three new MBS items were introduced to enable allied health practitioners to participate in multidisciplinary case conferencing for children with, or suspected of having, autism.
10.56
In relation to the recommendation to lift the age limit on autism-related items, Ms Fiona Sharkie, Autism Alliance, suggested that raising the age limit to 25 years was 'nonsensical' and should instead be removed altogether:
Really there should be no age cap. That goes to the earlier comments about autistic adults who are being discriminated against by the lack of access to diagnosis in their different situations of life. We do think it's an urgent matter.
10.57
In addition, both ESA and the RACP argued there was a need for a more comprehensive review of MBS items in relation to autism diagnosis. The RACP suggested this should include investigation of:
a new MBS item to allow an annual hour-long review of patient goals and needs;
a standalone MBS item for transition to adult services; and
the application of certain MBS items for people with intellectual disability to those with autism.
Autism awareness and understanding
10.58
As with other services, stakeholders identified a lack of autism awareness and understanding among parents, health professionals and educators as a significant obstacle to accurate and timely diagnosis. This was seen as a particular issue in relation to the late diagnosis of females.
Parents
10.59
Many parents lack awareness of the early signs of autism. As one parent explained, it was not until her son was diagnosed at age five that she realised many of the signs of her son's autism had been apparent from a very early age (around 4 months).
10.60
Positive Youth Incorporated pointed out that for many parents, information about child development comes via contact with health services. This includes child health and development screening programs that operate in most states and involve a series of developmental checks from birth until four years of age. For example, in New South Wales (NSW), these checks are carried out either by a child and family health nurse or by a general practitioner and are listed in the 'Blue Book' provided to each child born in NSW. The Blue Book also contains the Learn the Signs. Act Early developmental checklist to help parents identify whether or not their child is meeting developmental milestones.
10.61
However, the committee also heard concerns that these processes did not provide enough information for parents. For example, one mother observed that the development milestones in South Australia's Blue Book relate primarily to physical, rather than social, development. Unfortunately, this provided false reassurance that her daughter was progressing normally:
…on paper, my daughter was mostly meeting her milestones and nobody thought there was anything of concern about her. This 'tick box' exercise gave me false comfort that my daughter was doing fine when in fact we should have seen a specialist much sooner.
10.62
As with other services, it was noted that the effectiveness of child development checks relies on the knowledge of those carrying out the assessments. In some cases, this works very well. For example, one mother observed that after having her concerns dismissed by doctors and specialists, her local child health nurse was 'the only person who took my concerns seriously'.
10.63
Given the well-established and widespread nature of child screening and development programs, both OTARC and the Autism Alliance called for a national rollout of OTARC's training program for maternal and child health nurses to improve early identification of autism (see Box 10.2).
Box 10.2: OTARC training for maternal and child health nurses
In 2018, the Victorian Government announced $1.1 million for OTARC to train all Victorian Maternal and Child Health nurses in the early identification of autism for children under three years.
The training aimed to give maternal and child health nurses confidence in identifying the early signs of autism in infants, creating referral pathways, and raising concerns with parents in an empathetic and supportive way.
The program also aimed to empower parents as well as nurses in order to narrow the gap between parents' first concerns and receiving a definitive diagnosis.
The professional development package was offered to all maternal and child health nurses in Victoria and included both online and face-to-face training.
At the time of the announcement, training had already been rolled out across Tasmania and parts of New South Wales, with over 98 per cent of nurses reporting confidence in identifying early signs and deciding which referral paths to follow.
10.64
The Autism Alliance also called for further development and use of autism detection apps such as OTARC's ASDetect which is available in English Mandarin and Spanish. ASDetect guides parents through a series of activities for children aged 11–30 months which test social attention and communication behaviours. It then provides an assessment of the likelihood of autism. According to the Autism Alliance, research underpinning the app shows it has an accuracy rate of between 81–83 per cent, with the remaining percentage going on to be formally diagnosed with other developmental delays.
10.65
Other suggestions included the use of existing information channels to target information to parents, including the Blue Book equivalent in each state and territory.
Health professionals
10.66
When able to find 'skilled and supportive' professionals with an understanding of autism, the committee heard that the process of assessment and diagnosis can be 'overwhelmingly positive and affirming'.
10.67
However, in addition to the limited number of medical professionals specialising in autism, stakeholders also reported a general lack of autism knowledge among the broader health workforce—including GPs, psychologists and psychiatrists. As noted by one parent, the path to diagnosis is:
…highly dependent on finding and being able to access a knowledgeable clinician. Many GPs, paediatricians, allied health practitioners and psychologists do not have an adequate modern understanding of autism, and cannot adequately identify it…
10.68
According to BioAutism, this lack of understanding was reflected in the results of an unpublished survey of over 200 parents which found that a lack of professional knowledge accounts for just under 70 per cent of delays in diagnosis.
10.69
Poor autism understanding can also result in inaccurate and delayed diagnoses. For example, the results of an Autism Alliance survey revealed that over half of autistic adults were 'misdiagnosed with another condition before being diagnosed as autistic'. In addition, '31 per cent of parents and carers reported the same experience for children in their care'.
10.70
The committee heard numerous accounts of parents' concerns being ignored by medical professionals. In one case, a parent described how they had raised concerns with multiple health professionals for more than a year:
We were adamant there was more to [redacted]'s speech delay and behaviour but were frequently told by different GPs and health specialists that boys are developmentally slower than girls, or everyone will talk at their own pace, and my favourite: even Albert Einstein didn't talk until he was five. It's also our experience that first time parents' concerns are disregarded until a developmental delay is blindingly obvious.
10.71
Even parents who are well-educated about autism face difficulties. One mother described having her concerns 'repeatedly dismissed' despite having studied psychology and worked with autistic children for two years, before becoming a mother:
I identified that my son exhibited many red flags for autism from 12 months of age, including not pointing, restricted interest in toys, limited eye contact, no vocalising and not making or responding to my gestures. Despite my background, my concerns were repeatedly dismissed by doctors, specialists and paediatricians. … After two years of taking my son to appointments with my concerns, he was eventually diagnosed with Autism Spectrum Disorder Level 2, at three years of age.
10.72
Some stakeholders also identified instances where a lack of knowledge was accompanied by harmful and outdated views about autism. For example, A4 advised that some clinicians still believe autism is an 'attachment disorder' or associated with 'refrigerator mothers'—despite this theory being 'thoroughly discredited decades ago'.
10.73
These views played a role in one submitter's eight-year journey to obtain a diagnosis for her son. After first trying to get a diagnosis when her son was three, she tried again at age five before finally getting a private diagnosis at 10 years old. The mother described the comments of the professionals she saw—none of whom had an adequate understanding of autism—as 'very damaging':
I was told such things as 'it is a cry for attention because he comes from a broken home', 'it is trauma because his parents are separated', 'he doesn't look autistic', 'try a parenting class', 'it is an attachment issue—he wouldn't act this way if you were a full time stay at home mother', 'he will grow out of it if you discipline him more', we are all a bit autistic', there is no money for help even if he does get a diagnosis', and 'you don't want to burden him with an unnecessary label'.
10.74
Stakeholders also reported that health professionals, particularly those working outside the disability sector, often promoted a 'wait and see approach' to diagnosis. For example, one mother explained that her daughter had been diagnosed with sensory processing disorder at two and a half. After asking for a more complete diagnosis when her daughter was three, she was told to wait until her daughter was seven. When her daughter was seven, she was then told that assessments were not required and that she should focus on her daughter's handwriting via occupational therapy. In the end, a diagnostic assessment was not triggered until her daughter was 10 years old and had experienced a six-month period of debilitating symptoms including insomnia, extreme anxiety, behaviours of concern, social difficulties, panic attacks, and obsessive-compulsive traits.
10.75
While much of the evidence provided to the committee in relation to autism understanding focused on children, some stakeholders also highlighted the need for health professionals to have a better understanding about how autism presents in adults. For example, one submitter reported that in response to a survey of 78 healthcare professionals, 80 per cent wanted further training in autism in adulthood.
10.76
Ms Nicole Rogerson, Chief Executive Officer, Autism Awareness Australia, noted that similar delays in diagnosis wouldn't be accepted in relation to other health conditions:
The one thing that's really common is that the medical professions can be where we get stopped. It can be a GP who doesn't know enough. It can be a paediatrician who says, 'come back in six months'. We just wouldn't do this in any other area of health.
10.77
In response to these issues, numerous stakeholders identified the need for better autism education for health professionals—as part of both initial training and ongoing professional development. According to the Department of Developmental Disability Neuropsychiatry, University of New South Wales (UNSW 3DN), this should include a focus on the heterogenic presentations of autism.
10.78
More than one submitter also suggested providing more clinical guidance for GPs in relation to the identification of autism. For example, the AMA advocated for clinical guidelines for GPs, while Professor Julian Trollor, UNSW 3DN, suggested using clinical pathways for autism embedded into software used by GPs, such as HealthPathways. A similar strategy has been used successfully to address health needs in people with intellectual disability.
Early childhood educators and teachers
10.79
Stakeholders observed that the signs of autism in children can often be missed until the child comes into contact with the education system. This can be the result of a lack of parental awareness about the signs of autism but can also occur in situations where parents' concerns have been dismissed by medical practitioners.
10.80
However, the committee heard that autism awareness also varies within the early childhood and education sectors, with at least one submitter reporting that their concerns about their child were dismissed by professionals, including early childhood educators and teachers.
10.81
Despite early childhood educators and teachers being well-placed to identify early signs of autism, many do not feel well-equipped to engage with parents about their concerns. Ms Tamika Hicks, Manager of the Cardinia Lakes Early Learning Centre, described the challenges that face educators:
Educators are ill equipped with a 'toolbox' for answering questions, advising on pathways and providing assistance to children who need inclusion support in services. Conversations are difficult and are quite emotional, stressful and at times distressing for both the family and educators. Many conversations are met with push back and denial which can leave families distressed and educators quite frustrated knowing how important early intervention is.
10.82
This was reflected in evidence provided by one mother whose son was diagnosed with autism 12 months after early childhood educators at his preschool raised concerns. While 'initially offended' by the suggestion that her son's behaviours needed further assessment, she stated that she was 'now grateful that the preschool staff spoke up'.
10.83
As with healthcare professionals, stakeholders identified the need to embed autism understanding within both initial education courses and ongoing professional development for educators. For those in early childhood settings, Ms Tamika Hicks suggested this could include the option for a qualification such as a Diploma of Inclusion Support.
10.84
Some stakeholders also suggested that screening programs could be established in early childhood settings and schools.
10.85
To promote better engagement with parents, Ms Tamika Hicks suggested connecting Maternal Health Care Nurses with early childhood and child care services to support teachers and families, and to run family-friendly sessions on autism.
Gender bias
10.86
Many stakeholders raised the issue of a gender bias in relation to autism diagnosis and noted that that the existing diagnostic criteria are based on a typical male presentation. According to the Autism Alliance, this also applies to diagnostic tools like the Autism Diagnostic Observation Schedule and the Autism Diagnostic Interview-Revised, meaning they may 'lack the sensitivity and specificity required to identify autistic characteristics in women and girls.'
10.87
This has a particular impact on females who may not present with 'typical' autistic behaviours. For example, OTARC argued that 'female "special interests" may not stand out as being unusual (e.g., toy animals, Disney)' and may be considered 'gender typical'. This view was echoed by the Coalition of Autistic Women:
…when girls are lining up Barbie dolls on a shelf or grouping clothing in her wardrobe, rather than observing a restricted and repetitive behaviour, girls are likely to be praised for neatness, traditionally highly desirable in girls.
10.88
The committee heard that cultural stereotypes can also lead to dismissive attitudes toward some parents' concerns. One mother explained that she felt her concerns about her daughter weren't taken seriously in part because of the 'misconception that Asian little girls are often shy'.
10.89
In addition, females are also known to be better at camouflaging or masking their autism through social imitation.
10.90
As a result, females are likely to be diagnosed later than males. The Autism Alliance reported that 65.9 per cent of female respondents to the Study of Australian School Leavers with Autism were diagnosed at age nine or older, compared with 37.7 per cent of males.
10.91
Late diagnosis was also a common theme among submissions to the inquiry. For example, one submitter told the committee that her daughter was diagnosed at age 11, despite being engaged with health professionals over the previous decade in relation to her behaviours of concern.
10.92
The under-recognition of non-typical autistic behaviours also leads to misdiagnosis of autistic females. According to the Autism Alliance, females are 'more likely to receive a primary diagnosis of a mental health condition rather than autism'. Similarly, TARA revealed that respondents to its survey had been 'misdiagnosed with bipolar disorder, borderline personality disorder and psychosis, before receiving a correct diagnosis of autism'.
10.93
TARA also stressed that while mental health conditions can co-occur with autism, this is different from misdiagnosis, which—in addition to not facilitating appropriate supports—can also lead to autistic people being inappropriately medicated, with potentially serious consequences. Similarly, the Australian Association of Social Workers cautioned that autism in females can be 'overshadowed' by a mental health diagnosis (or misdiagnosis).
10.94
The complexity of autism diagnosis for females, including the interaction of autism with mental health conditions, was described by one autistic submitter who was initially misdiagnosed and subsequently went on a convoluted journey to eventually receive an autism diagnosis (see Box 10.3).
Box 10.3: The complexity of autism diagnosis for females with co‑occurring mental health conditions
Like most females diagnosed as autistic, I was diagnosed by accident.
After changing doctors because I was dissatisfied with the treatment I was receiving, my new GP after reviewing my file took me off all medication and weened me off a 20-year opioid addiction (I was taking up to eight codeine-based pills a day).
Once the opioids were out of my system, he quickly realised I suffered crippling social anxiety, suicidal depressive episodes, chronic insomnia and severe mood instability, the symptoms of which had been suppressed by my daily opioid use.
Through a friend who works in the mental healthcare industry I found a really good local psychiatrist who my GP was happy to refer me to for diagnosis and treatment for suspected bipolar mood disorder.
It only took two visits for my psychiatrist to work out I was NOT bipolar and medicating me for that condition would have had seriously detrimental effects on my health.
Like most female adult autistics, I’m incredibly adapted at appearing 'NORMAL' for short periods of time, so it took a little while for my psychiatrist to twig that I was effectively playing the part of a NORMAL person and tell me to stop doing it. Realising I wasn't going to get correctly diagnosed, I stopped pretending to be NORMAL and acted as I would in a safe place like at home and my psychiatrist had the 'ah ha' moment.
Just to ensure he had as much information as possible he, with my permission, interviewed my mum and dad, got information from my sisters and others, as well as read his way through the plethora of paperwork my mum had kept, everything from my first K1 school report onward.
It took six months of testing, interviews, information gathering and a second opinion to confirm my official diagnosis of Autism Spectrum Disorder (Level 2) with co-morbid ADHD and other associated mental health issues.
Source: Name withheld, Submission 9, p. 5.
10.95
Multiple stakeholders also highlighted the need for better education for parents, health professionals and others on different presentations in women and girls.
10.96
There were also a number of calls for the development of screening tools that will better identify autism in women, as well as other autistic people with less typical presentations.
Committee view
10.97
Current waiting times for an autism diagnosis are simply unacceptable—especially given the importance of early intervention to future life outcomes. The committee finds it particularly troubling that access to timely diagnosis appears so heavily reliant on having the ability pay for a private diagnosis and living in close proximity to a metropolitan centre.
10.98
While the committee acknowledges that the lack of biological markers for autism makes the diagnostic process more complex, no child should have to wait years for a diagnosis. The committee believes that a maximum timeframe for diagnosis must be established nationally and reported on at least annually. Ideally, this should be based on the best practice target of three months.
10.99
Although some of the current delay relates to the supply of diagnostic services, the committee heard that a significant proportion also arises from ignorance about autism. Addressing the delay in diagnosis will require action to both increase the supply of health care professionals who can diagnose autism, as well as improve the knowledge and skills of the existing workforce.
10.100
No child should have to wait eight years for a diagnosis because no one will take their parents' concerns seriously. As the committee heard, it is hard to imagine another condition or illness where these kinds of delays would be tolerated as a matter of course.
10.101
While the committee does not expect all health care professionals to be experts in autism, evidence provided to this inquiry suggests that some lack even the most basic understanding of autism, particularly in relation to the heterogenic nature of its presentation. The committee heard disturbing accounts of health care professionals who dismissed the concerns of parents, actively perpetuated misinformation and harmful stereotypes, and promoted a 'wait and see' approach to diagnosis. In more than one case, this resulted in an eight year wait for a diagnosis. As the committee heard, it is hard to imagine another condition or illness where these kinds of delays would be accepted.
10.102
As well as improving the supply of, and training for, professionals involved in diagnosis, there is also a need to expand the available pathways to early diagnosis. This should include options such as:
co-locating autism screening services with other early childhood services;
national implementation of the OTARC training program for maternal and child health nurses;
supporting collaboration between trained maternal health nurses and early childhood educators;
promoting use of the ASDectect app by parents, health practitioners and educators;
making better use of telehealth options to support regional and remote diagnosis; and
ensuring that existing child health and development programs maximise detection of the early signs of autism.
10.103
In addition, a lack of consistency in the approach to diagnosis is confusing for individuals and families. It also leads to variable quality of diagnosis. The committee heard that this variation persists despite the release of the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia (the National Guideline) in 2018.
10.104
While the committee agrees that education and training are important to support broader uptake of the National Guideline, it is simply not enough. Indeed, it is apparent to the committee that there will be no significant change until the MBS items related to autism diagnosis align with the process set out in the National Guideline. The committee is disappointed that the recent MBS Review did not explicitly address this issue—despite its stated goal of better aligning MBS items with 'contemporary clinical evidence and practice'.
10.105
The committee is also concerned that many of the recommendations that were supported by the MBS Review Taskforce have not yet been implemented. While the committee supports the Taskforce's recommendations in relation to diagnosis, complex allied health assessments, and multidisciplinary planning, it does not support the proposal to lift the age limit for diagnosis-related MBS items from 12 years to 25 years. Given the lifelong nature of autism, the committee believes the proposed age cap is arbitrary and should be removed altogether.
10.106
The committee recommends that, as a matter of priority, the National Autism Strategy identify actions to improve access to autism diagnosis. This should include:
establishing, and publicly reporting on progress against, an agreed target for a maximum waiting time for diagnosis that reflects best practice;
improving information for families and adults about autism and the pathways to diagnosis;
identifying opportunities to co-locate autism screening and assessment services within existing services, such as maternal health clinics, early childhood and child care services, and school education settings;
a national rollout of the Olga Tennison Autism Research Centre’s training program for maternal and child health nurses to improve early identification of autism;
identifying opportunities for collaboration between maternal health care nurses and early childhood educators to support identification of, and communication about, autism in early childhood and child care settings;
promoting use of the ASDectect app by parents, health practitioners and educators
developing diagnostic tools that are more sensitive to the heterogenic presentation of autism, particularly in women and girls;
working with medical colleges and professional bodies to improve the supply of healthcare professionals with expertise in autism diagnosis;
embedding autism within initial education courses for healthcare professionals and educators, including training in the heterogenic presentation of autism;
promoting use of the Autism HealthPathways platform to aid clinical decision-making in relation to autism assessments; and
identifying ways to improve access to diagnostic services for people in regional and remote areas, including telehealth options.
10.107
The committee recommends that state and territory governments review their child health and development screening programs to identify opportunities to improve early identification of autism.
10.108
The committee recommends that the Australian Government task the Medicare Benefits Schedule (MBS) Review Advisory Committee with an immediate review of MBS items related to diagnosis of autism. The aim of the review should be to align current MBS items with the diagnostic process established in the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia, as well as recommend new items required for the same purpose.
10.109
The committee recommends that the Department of Health prioritise implementation of the remaining recommendations of the Medicare Benefits Schedule Review Taskforce (the Taskforce) in relation to the diagnosis of autism, complex allied health assessments and multidisciplinary planning (as set out in the Taskforce's June 2020 Report on Primary Care).
10.110
The committee recommends the removal of the current age limit on Medicare Benefits Schedule items related to the diagnosis of autism.