14.1
This chapter provides an overview of health outcomes for autistic people, including the capacity of the current health care system to meet their needs. It then discusses the challenges autistic people face in relation to accessing adequate and appropriate health care services, with a particular focus on restrictive practices, maternal health care and mental health services.
14.2
While diagnosis and early intervention can fall within the broader category of health care, they are addressed separately in Chapters 10 and 11 respectively.
Overview
14.3
As described in Chapter 3, autistic people experience poor physical and mental health in comparison to the general population, with known—or probable—correlations between autism and certain medical conditions. These conditions include seizures, psychiatric illness, intellectual disability, attention deficit hyperactivity disorder, gastrointestinal disorders, sleep difficulties, problematic feeding behaviours, mobility restrictions, and frailty and premature ageing. As described by the Department of Developmental Disability Neuropsychiatry, University of New South Wales (UNSW 3DN), the rate of co-occurring conditions 'suggests that this population group experiences one of the most significant health disadvantages of any population group in Australia'.
14.4
The prevalence of co-occurring mental health conditions was highlighted as a particular issue for autistic people. A number of stakeholders, including St Vincent's Health Australia (St Vincent's), noted that between 50–70 per cent of autistic individuals experience mental health conditions, with anxiety and depression being especially common, along with high rates of suicidal ideation. This appears to align with the results of an Australian Autism Alliance (the Autism Alliance) survey which found that 75.2 per cent of adult respondents had a diagnosed mental health concern. St Vincent's also pointed out that mental ill health is exacerbated by the 'poor physical health, socio-economic status and lack of social supports experienced by this population'.
14.5
The intersection of autism and intellectual disability was also revealed to be another significant challenge. According to UNSW 3DN, just over one in every 1 000 people is estimated to have both autism and an intellectual disability, with this dual diagnosis being 'linked to poorer health status and more complex health care needs across the lifespan'. Likewise, St Vincent's noted that intellectual disability occurs in about half of people with autism. Given the high rates of mental health conditions found in both the autistic population and in people with intellectual disability, it surmised this would place the dually diagnosed population at even greater risk of mental ill health.
14.6
Despite the general strength of Australia's health care system, it appears that it does not meet the needs of autistic people. For example, UNSW 3DN described the health care landscape as 'one of lack of preparedness for the needs of autistic people'. According to UNSW 3DN, the problem is systemic and affects health care policy and practice at all levels of the health care system. It also contributes significantly to autistic people's poor physical and mental health outcomes:
This lack of preparedness manifests on every level (practitioner, services, policy); in each health care compartment (primary, specialist and acute care settings); and in services across the life span (from childhood to later life). Such systemic lack of preparedness is a major contributor to the stark mental and physical health disadvantage experienced by people with developmental disabilities compared to the general Australian population.
14.7
Monash University also argued that the health care system 'is known to fail those with complex problems requiring input from multiple professionals', with the negative impacts being 'amplified if care is provided by multiple agencies'.
14.8
While there appears to be a lack of autism-specific statistics about use of—and satisfaction with—the health care system, available data suggest that autistic people have unusually high rates of hospital emergency department utilisation, which may indicate a failure of preventative and primary health care services. For example, an Autism Alliance survey found that 35.1 per cent of autistic adults had attended a hospital emergency department in the previous 12 months. This compared to the Australian Bureau of Statistics' analysis of the general population which showed that only 12.7 per cent of people aged 25–64 years and 24.4 per cent of people aged 85 years and over presented at an emergency department at least once per year.
14.9
The Autism Alliance also cited the Victorian Parliamentary Inquiry into Services for People with Autism Spectrum Disorder, which found that young autistic people are '10 times more likely to be admitted to hospital for medical illnesses and complaints'. As noted by the Autism Alliance, this creates a 'dual burden' of higher health system costs associated with treatment in an acute setting, as well as 'the significant stress placed on patients when receiving care in a hospital'. In response, UNSW 3DN advocated for the inclusion of autistic people's needs in all primary and preventative health care initiatives in order to 'address the high rate of potentially avoidable morbidity and hospitalisations'.
14.10
Despite the poor outcomes of the autistic community and the failure of the health system to meet the needs of this cohort, multiple submitters noted the dearth of research aimed at improving their health trajectories. For example, UNSW 3DN recommended that there should be routine analysis and reporting of 'population health outcomes for people with developmental disabilities and those on the autism spectrum, including health status, health service utilisation and health outcomes'. UNSW 3DN also recommended better tracking of mortality data for autistic data in order to inform health initiatives. According to UNSW 3DN:
Analysis and reporting of mortality data will detect gaps in care and care pathways, and direct future health care and social service spending and research initiatives towards areas of high need. Trends in mortality data over time are also crucial in tracking the impact of policy shifts and other changes in the health and social care landscape on the health of vulnerable populations.
14.11
Other submitters identified the need to focus on better understanding co‑occurring conditions and evaluating clinical interventions. For instance, the Cooperative Research Centre for Living with Autism (Autism CRC) stressed the 'urgent need' to understand 'risk factors, causes and presentation of co-occurring conditions', as well as clinical interventions.
14.12
Similarly, the Scope-University of Melbourne Partnership (Scope-UoM) contended that a lack of understanding about factors related to poor mental health means that 'we lack key data points for informing effective, individualised intervention and support approaches'. Likewise, Monash University described as 'notably absent' the development and evaluation of appropriate interventions for autistic children with concurrent intellectual disability.
Challenges in accessing health care
14.13
The committee noted that autistic people face a number of challenges when trying to access mainstream health care services. These include:
difficulties navigating a complex service environment;
a lack of autism knowledge and understanding;
diagnostic overshadowing and co-occurring conditions; and
a lack of autism-friendly health care environments.
Navigating a complex service environment
14.14
Australia's health care system is comprised of a complex mix of service providers and health professionals working in both government and non‑government sectors across a range of settings, from large hospitals to small health clinics.
14.15
This complexity is also reflected in the system's administration and funding arrangements. For example, responsibility for primary health services, other than general practitioners (GPs), lies with state and territory governments, while responsibility for mental health supports and services are substantially shared across levels of government. Similarly, funding for the National Disability Insurance Scheme (NDIS) is shared between all governments, while the Commonwealth administers the National Disability Insurance Scheme Act 2013 and exercises statutory powers with the agreement of states and territories.
14.16
While issues related to poor service coordination are addressed in more detail in Chapter 6, stakeholders identified the complexity of the system as a barrier to accessing adequate health care services.
14.17
For instance, the Queensland Centre for Intellectual and Developmental Disability, University of Queensland and the Social Global Studies Centre, RMIT University (University of Queensland and RMIT) described how a lack of understanding about how the health system works, and how to access its different parts, can affect access to health care:
For example, accessing allied health services can be confusing for reasons including the different pathways (e.g., privately and out-of-pocket, referral for bulk-billed appointments to private service using Medicare criteria for care plans or referral to public services, often with long wait times).
14.18
This view was shared by the Australian Psychological Society which reported that its members' clients experience 'many difficulties navigating service provision, follow-up support and obtaining referrals'.
14.19
UNSW 3DN explained that these difficulties can be exacerbated by the 'cognitive, communication based, and adaptive functioning challenges associated with intellectual disability and/or autism'. According to UNSW 3DN, these challenges mean that autistic people may have difficulty processing information, while those with concurrent intellectual disability may have poorer health knowledge and less ability to navigate complex systems or seek support services. UNSW 3DN also concluded that commonly used health resources, such as written brochures, may not be accessible for autistic people, further hampering their ability to participate in broader population health initiatives.
14.20
However, challenges navigating the health care system were not limited to autistic people. Parents and carers of autistic people also reported difficulties. For example, one submitter described the 'constant issue of deciphering which department or support system is responsible' for her son's supports—be it the NDIS, education, Medicare or the public health system. She also pointed to gaps in the system where her son's disability-related health and dental costs are not supported by either the NDIS or the public health system in a way that would improve outcomes for her son.
14.21
The lack of a holistic approach to health care was also highlighted by other stakeholders. According to some submitters, this has been exacerbated by changes to the Medicare Benefits Scheme that push 'patients to only discuss one issue or problem at a time with their GP'. As a result, the committee heard calls for a more integrated approach to service delivery:
To be frank the system needs to be clear, united and serve as a one-stop shop entry point for someone with autism to go and is well equipped to refer someone to another provider that can help if that cannot happen within the system.
14.22
A similar sentiment was expressed by submitters who advocated for a single service interface, rather than having to deal with the NDIS for some supports and mainstream services for others.
14.23
In response, multiple stakeholders, including La Trobe University’s Olga Tennison Autism Research Centre (OTARC), highlighted the need for better care coordination and systemic change in order to better support autistic people. For example, UNSW 3DN recommended that all mainstream health care services be required to develop 'clinical care pathways through each of their core service components', with information about the pathways made widely available to providers, consumers and carers.
14.24
In addition, UNSW 3DN contended that the provision of health information should be underpinned by a minimum service standard that all information, including commonly used forms, are made available in an accessible format. It recommended that this be 'accompanied by training for health staff so that they know how to use them'.
14.25
UNSW 3DN also argued that states and territories should implement integrated models of care that target the health needs of autistic people. According to UNSW 3DN, this should include specialised and 'one-stop' health services for people with particularly complex needs, including autistic people with intellectual disability, such as those piloted in New South Wales (see Box 14.1). It argued that these services could provide timely and comprehensive assessment of care needs 'including oral health care and, if necessary, imaging, and other investigations and procedures under anaesthetic'.
Box 14.1: New South Wales – support for complex presentations
There are a range of services that support people in health settings, including those with autism, when there is additional complexity.
Specialised Intellectual Disability Health Teams have been established for people who have complex health conditions, intellectual disability and:
a current unresolved health problem;
health care needs that cannot be met by usual care providers and pathways; and
an existing primary treating clinician/team to implement care plan recommendations and follow through with care.
The teams and positions provide:
comprehensive assessment of current needs;
a health care plan with recommendations;
referrals to health and other services; and
advice, information and resources to the client's primary treating team (GP or other clinicians) who provide ongoing care and can implement the plan recommendations.
People with autism who have complex support needs may also be eligible for support through the Integrated Service Response (ISR) when their wellbeing is threatened by crisis that is unable to be resolved locally.
The ISR works with the NDIA, NSW Government agencies, non‑government organisations, NDIS providers and the private sector to promote engagement, collaboration and innovation to effectively manage or resolve highly complex situations.
Source: NSW Government, Submission 65, p. 7.
14.26
In addition, the Autism Alliance advocated for the development of a 'national roadmap' to improve health services for autistic people. It suggested that, as with the National Roadmap for Improving Health Services for People with Intellectual Disability, there is 'great value in setting out the aims and goals for a specific cohort of people … and coordinating a response that includes input from the community and healthcare providers'. As an example, it pointed to the United Kingdom National Health Service Long Term Plan which includes specific actions to address the causes of morbidity and preventable deaths for autistic people.
14.27
Incorporating the needs of people with autism within health policy frameworks was also supported by UNSW 3DN, given 'their more frequent and complex health needs, as well as … their higher mortality rates associated with mental and physical health'. This view was shared by the Royal Australian and New Zealand College of Psychiatrists which raised concerns that 'many key government policy documents do not acknowledge the increased vulnerability to mental health conditions and suicide experienced by people with [autism] who, in turn, may miss out on appropriate support'.
14.28
Accordingly, the Autism Alliance advocated for the development of a National Plan on Autism in Mental Health to align with the 'the next iteration of the National Mental Health and Suicide Plan'. Similarly, the New South Wales Government (NSW Government) recommended that the National Autism Strategy harmonise with 'national Mental Health and Suicide Prevention Plans and National Disability Strategies to ensure that suicide prevention approaches for people with [autism] are prioritised in policy with appropriate resources to create systemic change'.
Autism knowledge and understanding
14.29
In line with stakeholder views on other service sectors, the adequacy of health care services is also affected by a lack of autism knowledge and understanding. For example, an Autism Alliance survey found that 86.7 per cent of autistic adults and 82.1 per cent of parents and carers 'reported challenges due to health professionals' lack of understanding about autism'. More specifically, only 22.5 per cent of respondents rated their GP's autism knowledge as good, while 32.6 per cent rated their GP's knowledge of autism as poor.
14.30
This was also reflected in the experience of autistic submitters, as well as parents and carers of autistic individuals. For example, upon disclosing her diagnosis to a doctor at a medical clinic, one autistic woman was asked whether she had 'done the blood test for Aspergers' syndrome':
…to which I replied, 'There is no blood test.' He asked me how I knew and I said I had done the research. He promised to do the research too and … told me to come back to him for 'treatment for my Aspergers' and gave me his business card.
14.31
Another submitter described the impact on her autistic son of a dental procedure that failed to account for her son's sensory needs:
He recently had a dental surgery where the doctor administered a local anaesthetic to his mouth, even though he had a general anaesthetic. My son has extreme oral sensory issues which is how he ended up being treated as he was. Waking with numb lips and mouth was incredibly distressing for him, and he could not understand what had happened. He bit his lips repeatedly, which became severely infected and became a bigger issue than the recovery for his surgery and prior presenting issues.
14.32
For hospital emergency departments, the survey results were even worse, with the Autism Alliance reporting that 45 per cent of respondents rated the autism knowledge in those settings as poor. Monash University also noted the 'paucity of trained staff in hospital settings to manage children with autism, especially at times of high-risk behaviours'.
14.33
According to the Autism Alliance, health care professionals themselves also recognise that a lack of autism understanding, experience and resources contributes to their difficulties in providing adequate care. It noted the results of a recent Australian study which found that while 59 per cent felt confident in providing care, over 80 per cent wanted additional training, 'particularly in communication, behaviour and mental health management'.
14.34
These results seem to be reflected in the findings of an international review (including Australian studies) which found:
the complexity of working with autistic patients was beyond the usual role of service providers;
limited knowledge and resources negatively affected service provision to autistic patients and their families;
a lack of training or prior experience with autistic patients was a barrier to care; and
a need for information and training to improve service provision.
14.35
As with diagnosis, stakeholders also raised particular concerns about a lack of knowledge in relation to autism in adults, as well as its presentation in females.
14.36
In response, multiple stakeholders called for better training and professional development for health care providers. For example, the Autism Alliance proposed that a 'systemic approach' be taken to 'strengthen the autism competency of healthcare professionals, with a particular focus on GPs, emergency staff and mental health practitioners'. In a similar vein, the University of Queensland and RMIT suggested that minimum training requirements be mandated for all health professionals, with a 'strong focus on autism in adulthood and the experiences of autistic women'.
14.37
UNSW 3DN also supported mandatory autism training for medical, psychological and nursing students, as well as all staff in public health facilities. It suggested that the training for university students should be informed by an audit of the autism content for relevant courses—similar to work done in relation to intellectual disability. UNSW 3DN also advocated for:
enhanced training and career pathways for existing medical speciality groups, such as GPs, paediatricians, psychiatrists, rehabilitation physicians and emergency physicians;
scoping of the need for, and feasibility of, subspecialty training in key medical specialties; and
career pathway development in key medical specialties to ensure that funded specialist positions are available in the public health system.
14.38
In terms of career pathways, stakeholders, such as the Office of the Public Advocate Victoria (OPA Victoria), suggested that a cohort of autism specialists could be employed within hospital networks to educate other staff and advise on 'best practice approaches to patient management' for autistic people.
14.39
St Vincent's also suggested the introduction of autism liaison services for all general hospitals. These services could help 'prepare autistic patients and hospitals for the admission, assist with reasonable adjustments, provide training and education on [autism] and related mental health or behavioural issues, and provide expert input to prevent and minimise problems'.
14.40
Stakeholders also noted the opportunity to make better use of existing tools and resources. For example, the Autism CRC indicated it had developed 'a number of tools to upskill the clinical workforce on autism and its presentation', including:
the Comprehensive Health Assessment Protocol for Autism (CHAP-A), a self-health assessment tool for autistic adults to share with GPs;
development of an autism pathway that is embedded in the national HealthPathway system used by health professionals, including GPs; and
resources and professional development modules made available to GPs across Australia (with almost 4,000 logged completions to date).
14.41
However, the Autism Alliance noted that uptake of these tools has not been widespread and suggested that a systemic approach to upskilling is required. The Autism CRC concurred and noted that dissemination and use of these tools 'has been via direct engagement with clinicians', whereas broader implementation would require 'a systemic approach through national and state health service sectors'.
14.42
To this end, UNSW 3DN suggested that a national training centre and resources clearing house be established to develop, collate and disseminate resources aimed at helping health professionals improve practice for people with intellectual or developmental disabilities, including autism.
Diagnostic overshadowing
14.43
In addition to a general lack of autism understanding in the health care system, stakeholders, such as OTARC, raised concerns that insufficient knowledge of co‑occurring conditions is leading to diagnostic overshadowing.
14.44
As described by the University of Queensland and RMIT, diagnostic overshadowing occurs when 'medical professionals attribute a sign or symptom to the person's autism rather than seeking a medical cause'. According to Professor Keith McVilly of the University of Melbourne, this means that a person's autism can come to 'define them as a person', as well as 'overwhelmingly and inappropriately' guiding their treatment in many cases. As noted by Autism Aspergers Advocacy Australia (A4), this can turn an autism diagnosis into another barrier to accessing adequate health care:
Too many clinicians cannot see beyond a person's autism, attributing everything to autism and ignoring other ailments. Too many autistic people have undiagnosed chronic health conditions. Autistic people experiencing trauma or mental illness are denied services and supports for other illnesses because they are excluded from services or their needs are not recognised.
14.45
Autistic people's concerns about diagnostic overshadowing were reflected in the results of an Autism Alliance survey which found that 35.7 per cent of autistic adults were concerned that obtaining an autism diagnosis would overshadow their other health needs.
14.46
Diagnostic overshadowing was also seen as a particular issue in relation to co‑occurring mental health conditions. As Professor Keith McVilly explained:
We need to recognise that a person with autism might have anxiety or depression. Indeed, our research tells us that a very high proportion of people will. We also need to acknowledge that many people presenting with anxiety and depression may well have undiagnosed autism, and our practitioners need to be able to have the knowledge and the skills to work in that very murky world of differential diagnosis. It's not 'I've got autism' or 'I've got depression'. Oftentimes it might be both.
14.47
UNSW 3DN also noted that diagnostic overshadowing was more likely to occur in situations where autistic people 'struggle to identify or communicate their internal experiences of mental distress or physical discomfort to clinicians'.
14.48
In addition, the University of Queensland and RMIT suggested that a lack of holistic care means that patterns or links between symptoms are frequently missed by health professionals—a situation it argued is made worse by the push for GPs to discuss only one patient issue or problem per visit.
14.49
In response, submitters such as OTARC and the Autism CRC advocated for better education for health care providers on the on the presentation and management of co-occurring conditions. OTARC also called for training in the 'appropriate use of validated tools to identify and treat these conditions'.
14.50
Similarly, the University of Queensland and RMIT proposed the introduction of mandatory minimum training requirements in relation to co-occurring conditions. They also suggested encouraging the use of 'a Medicare item or items allowing the discussion of multiple health problems in one consultation'.
Autism-friendly health care environments
14.51
A number of stakeholders, including UNSW 3DN, observed that the delivery of health care services can be affected by 'core features of autism', including 'communication differences, sensory sensitivities and adaptive functioning difficulties'. As St Vincent's explained:
…noise, bright lights, lots of movement, being touched, and different smells can be incredibly aversive and precipitate severe distress and behavioural meltdowns. Social communication impairments can result in the person experiencing difficulty coping with new environments, changes in routine, and not knowing exactly what to expect. Difficulties with planning, sequencing, understanding complex instructions and processing information are also reported by many individuals.
14.52
Accordingly, many stakeholders observed that the current lack of autism-friendly health care environments poses a significant challenge to effective care provision for autistic people.
14.53
This was also reflected in the views of autistic patients. For example, an Autism Alliance survey found that almost 85 per cent of respondents experienced sensory barriers to accessing health services. These included sensitivities to bright lights, odours, touch, patterns and textures. Likewise, over 90 per cent reported that anxiety linked to health care environments was a challenge to accessing care, while 76.6 per cent reported that communication issues also created access challenges. Similarly, the Commissioner for Children and Young People Western Australia cited anxiety, sensory overload, fear of crowds, and an inability to use public transport as deterrents to young autistic people seeking treatment on their own.
14.54
Some stakeholders, such as the Marymead Autism Centre, noted that hospital settings are especially problematic and can be 'disorienting and difficult places for autistic people', particularly for those with sensory issues who can feel 'barraged by questions in a physical environment that can feel loud and distressing' due to electronic noises, fluorescent lights, and colours that can be overwhelming. This can be exacerbated by the way hospitals operate, time pressures on hospital staff, and significant variation in the knowledge, experience and willingness of hospital staff to make adjustments for autistic patients. As one autistic individual told the Autism Alliance:
The world is chaotic... it's hard to exist in when everything is louder, brighter, noisier and smellier. It would be nice for all health professionals to understand that the anxiety and sensory overwhelm is very real and, instead of trying to devalue the experience, provide support for it instead.
14.55
Another submitter described the lack of accommodations made for her autistic son, who is mostly non-verbal:
Hospitals and the accessing health care can be confronting for my son, doctors' visits and testing procedures need to be carefully planned for, as most places have no non-verbal or [augmentative and alternative communication] assisted capacity, nor the know how in any meaningful way to communicate with my son. We constantly need to remind staff at x‑ray rooms and pathology, that our son needs alternatives and understanding, we are constantly sent to other specialists and special needs clinics, or we have to teach him tolerance, and provide step by step education for the procedure ourselves, along with the help and advice of his therapists, in order for my son to understand and sit through and cooperate in a simple dental x-ray, or have a blood test taken. This needs to be addressed, doctors' clinics, dentists and hospitals need to have policies and protocols in place to support autistic individuals, and alternative means of communication.
14.56
According to Scope-UoM, not accommodating autistic people's needs can leave them unable to 'describe their symptoms, communicate pain, and/or have their symptoms validated and taken seriously'. In addition to affecting the quality of care autistic people receive, this can also result in higher costs (if symptoms and supports needs become acute) and can also contribute to disproportional mortality. It can even prevent access to health care altogether, as observed in the following reports to Speech Pathology Australia from its members:
A young man who cannot tolerate wearing clothing. His care staff asked the doctor's office to avoid a waiting room environment due to this, so time with clothing was minimised. This was not accommodated, which led to the young man undressing himself in the waiting room. He was then asked to leave and was unable to attend his neurology appointment.
A man's family requested an appointment be conducted in the van outside as he becomes agitated in new environments and with new people (including demonstrating behaviours of concern that would have put members of the public at risk). This was refused and consequently, he has still not been able to see a neurologist.
14.57
Even when autistic people can communicate their support requirements, stakeholders such as Marymead Autism Centre explained that a lack of autism understanding means this information is not always acted on. For example, the Coalition of Autistic Women commented that when women try to self-advocate by describing their sensory needs, 'health care professionals frequently ridicule or dispute the diagnosis and refuse to consider accommodations'.
14.58
Conversely, the Autism Alliance pointed to the significant gains that can be made when 'attentive and considered clinicians' make small changes. As one autistic person reported to the Autism Alliance:
My local GP is brilliant. Appointments are made for late morning before they have their break or late in the afternoon. We usually have double appointments so I have time to answer questions and discuss health concerns. This is great for my children who I am teaching how to self-advocate in health care settings. Before we go into the room, he always has the blind open and the flickering fluoro lights that cause me pain are off.
14.59
The contrast in results for health professionals who adjust their approaches, compared to those who do not, was also highlighted in a case study provided by autistic advocate, Ms Geraldine Robertson (see Box 14.2).
Box 14.2: Case Study – 'L'
L. was admitted to a psychiatric ward. He was frequently restrained for not following instructions.
His autistic advocate explained to staff that he would follow instructions if they were provided in the format of 'reason' followed by 'instruction'.
The problem was that if L. did not want to follow the instruction immediately, his processing speed, which is often slow for autistics, did not enable him to make connections between instructions which could be negotiated and those which could not.
Giving the reason first, for example, 'Someone is upset and needs space. You need to go to your room immediately.' resulted in a rapid and appropriate response to staff members who listened to the advocate.
Those who continued to give instructions without reason, or followed by reason, continued to need to apply restraints.
Source: Ms Geraldine Robertson, Submission 165, [p. 3].
14.60
Multiple submitters argued that health care settings must improve accessibility for autistic people. Suggested actions included:
introducing autism-friendly universal design principles across major health infrastructure, including quiet, low-sensory emergency departments, waiting and treatment rooms in public hospitals;
implementing longer consultation times and reduced wait times for autistic people (expedited triage of care);
giving patients the option to make appointments online, and providing training for health professionals on how to adjust their communication to meet the needs of their autistic patients;
encouraging broader uptake of existing initiatives to reduce communication barriers, such as the care passports and communication boards used in the Frankston Hospital emergency department (see Box 14.3);
adapting measures that are in place to improve health care responsiveness for other cohorts (for example, actions to address cultural needs include alternative signage and modified clinic times and locations);
adapting autism-specific initiatives from other sectors for use in health care settings (for example, Coles 'quiet hour'); and
funding further research into how to improve the accessibility of health care services for autistic people.
Box 14.3: Frankston Hospital – adjustments for autistic patients
In 2017, the Frankston Hospital emergency department introduced care passports and communication boards to help improve the care provided to autistic patients. These initiatives were based on a paper written by emergency department nurse and mother of two autistic children, Antje Walter, as well as suggestions generated by consumer feedback.
Care passports can be completed by autistic individuals or their carers when they attend the emergency department and are used to identify additional social needs, sensory needs, communication needs and behavioural needs. This can include information about whether an autistic patient is verbal or non-verbal, whether they are sensitive to noise, lights, touch or pain, and whether there are particular factors that can trigger behavioural challenges.
The hospital's communication boards are based on the exchange communication system and are developed using Boardmaker software. One board is used to help autistic patients communicate their needs—for example, pointing to the site of pain without having to communicate verbally. A second board is used to communicate the emergency department assessment process to autistic patients.
Restrictive practices
14.61
At its most extreme, a lack of autism knowledge and a failure to provide autism-appropriate supports and adjustments in health care settings, can contribute to the use of restrictive practices to manage complex behaviour. As described by the NSW Government, restrictive practices include:
prescription of psychotropic medications to manage behaviours of concern;
restricting a person's access to environments or objects;
the use of restraint devices or physical restraint; and
14.62
According to the NSW Government, the use of restrictive practices is exacerbated by the difficulties service providers have in 'accessing registered behaviour support practitioners to provide strategies for the positive and proactive management of challenging behaviour'. A shortage of trained behaviour support therapists appeared to be a common theme among stakeholders, with a Victorian-based submitter describing a situation where a positive behaviour specialist was flown from Sydney to Melbourne 'on a regular basis to provide behaviour supports'.
14.63
While concerns about restrictive practices were raised most frequently in relation to school education (see Chapter 12), a number of stakeholders also identified concerns in relation to their use in health care settings.
14.64
The use of restrictive practices in hospitals was identified as a particular concern. For example, Monash University submitted that acute care staff are not adequately trained in managing the needs of autistic children, including managing behaviours such as aggression. As a result, 'they lack confidence in preventing and managing externalising behaviours, including those that place the child, family or staff at risk'.
14.65
Other stakeholders, such as the OPA Victoria, also pointed to an overreliance—at least in Victoria—on the common law doctrine of necessity. As illustrated by Oliver's story (see Box 14.4), this may be related to a lack of skilled support for autistic people with complex needs.
Box 14.4: Office of the Public Advocate Victoria: case study (Oliver)
Oliver—a young, non-verbal autistic man with an intellectual disability—was admitted to hospital for treatment of significant physical injuries sustained in an accident. The OPA Victoria became involved with Oliver as a guardian and advocate after Community Visitors found Oliver naked and restrained to a bed by four-point shackles.
OPA Victoria discovered that restrictive practices had been used on Oliver for many months and that he was subject to three restraint mechanisms: psychotropic medication to quieten him, shackles to physically restrain his movements, and containment to prevent him from leaving the unit.
As a result, Oliver's level of agitation steadily increased, with behaviours related to rectal digging, taking off his clothes and wanting to be naked, defecating on the floor, and at times being very physically agitated.
Initially, Oliver was unable to comply with medical advice so there was a clinical need for physical restraints to enable his injuries to heal. Once healed, the treating team continued with these measures because of concerns for staff safety.
After some months, the Department of Health and Human Services agreed to fund behaviour specialists to work with Oliver while in hospital. These specialists worked with Oliver for up to 12 hours a day, during which time it was possible to remove the shackles to reduce his agitation. While nursing staff were invited to remain in the room to learn engagement strategies, they instead observed from outside the room.
Similarly, Oliver's family found the hospital reluctant to let them educate staff on how to support their son. Further, the hospital would not allow Oliver's family to take him into the hospital grounds with a wheelchair. When the disability workers or his parents were unavailable, Oliver remained under restraint for the entire day.
Oliver was also not provided physiotherapy or occupational therapy because staff were too scared to interact with him unless he was shackled.
Source: Office of the Public Advocate Victoria, Submission 80, pp. 11–12.
14.66
In light of these concerns, stakeholders such as the OPA Victoria advocated for training to upskill health care staff in the management of complex behaviour, including the lawful use of restrictive practices and compliance with relevant human rights legislation. As an example, Monash University drew attention to a 'high‑fidelity simulation training program' it has developed for hospital staff to support management of challenging behaviour. The program includes web‑based learning for working with children with autism, as well as a simulation-based group education session.
14.67
Other stakeholders called for a 'nationally consistent framework for eliminating restrictive practices, across all service settings, including health and mental health'. Similarly, the OPA Victoria proposed that all Australian health ministers develop 'a legislated safeguarding framework to oversee the use of restrictive practices by health practitioners in hospital settings'.
14.68
To this end, the NSW Government indicated that it is 'working towards the elimination of restrictive practices' including by 'promoting alternative evidence-based practices, improving access to behaviour supports and developing frameworks that limit the use of restrictive practices unless no other alternative exists'.
14.69
The Department of Social Services, Department of Education, Skills and Employment and the Department of Health (the departments) also highlighted the existence of the NDIS (Restrictive Practices and Behaviour Support) Rules 2018 (the Rules). While relevant to NDIS providers only, the Rules establish the conditions applying to behaviour support services and restrictive practices, 'including the requirement to develop a behaviour support plan and report the use of restrictive practices to the NDIS Commission'. The departments also noted that the aim of the NDIS Commission behaviour support function is to reduce and ultimately eliminate the use of restrictive practices.
Maternal health care
14.70
Various stakeholders cited maternal health care as a particular challenge for autistic women. For example, the Autism Alliance claimed that the difficulties autistic people experience when accessing healthcare 'coalesce for many women during pregnancy, childbirth and postnatally'.
14.71
As noted by submitters such as A4 and the Autism Alliance, research has found that:
40 per cent of autistic women experience prenatal depression and 60 per cent of autistic women experience postnatal depression (compared with 12 per cent in the general population);
34 per cent of autistic women said the process of birth was not explained well to them;
64 per cent of autistic women have difficulties breastfeeding their first child and 51 per cent have difficulties breastfeeding their second child;
61 per cent of autistic mothers said they needed additional support from service providers but only 14 per cent received the required support when they asked for it;
60 per cent of mothers experienced anxiety speaking to professionals, with 44 per cent experiencing selective mutism due to their anxiety; and
80 per cent of autistic mothers worried that the attitude of professionals would change towards them after disclosure of their autism.
14.72
These findings were reflected in evidence from Yellow Ladybugs, which also reported that autistic women were 'more likely to find motherhood an isolating experience, to worry about others judging their parenting, or feel unable to turn to others for support in parenting'.
14.73
As with general health services, unaccommodating environments and a lack of autism understanding were commonly cited barriers to effective maternal health care. For example, the Autism Alliance described the 'triggers and stressors' that may be present in mainstream health settings:
…bright lights and loud, busy birthing suites can be overwhelming sensory experience; inattention to appropriate communication; different understandings of consent to touch and a broad lack of understanding about how an autistic mother might be processing an already stressful situation can cause pain and suffering and can severely limit access to mainstream medical facilities.
14.74
Similarly, the Coalition of Autistic Women explained that sensory issues can affect the way autistic women experience sensory information. This can include being less sensitive to pain:
…some women have reported that their progression through childbirth was at the later stages of completion before being given assistance as they outwardly did not present in a way maternity staff could relate to.
14.75
In response, stakeholders proposed a range of actions that could be adopted to improve maternal health care. These included:
better training for health care professionals, including lactation consultants;
autism-specific tools and processes to screen for and identify pre- and post‑natal depression in autistic mothers; and
targeted support to combat mental health distress.
Mental health
14.76
Multiple stakeholders observed that while autistic people are more likely to experience poorer mental health than the general population, they often struggle to access appropriate mental health care tailored to their needs. For instance, St Vincent's noted consistent reports by individuals and families about 'difficulty accessing mental health services across the entire continuum of care, including primary health, mainstream mental health, emergency and crisis support, and specialist services'. St Vincent's also pointed to the results of a 2013 study by Autism Spectrum Australia (Aspect) which found that only half of autistic adults were receiving help for their mental health conditions.
14.77
A more recent Autism Alliance survey produced similar results. For example, while 75.2 per cent of respondents had a diagnosed mental illness and 69.7 per cent had seen a mental health practitioner in the previous 12 months, only 57.3 per cent had been about to get appropriate support. A further 29.1 per cent had been unable to get appropriate support, while 3.6 per cent of respondents had not tried to get support. In terms of 'usefulness' in addressing mental health needs, survey respondents reported similar results for GPs, psychologists and psychiatrists (see Table 14.1).
Table 14.1: Autistic adults views on the usefulness of practitioners in addressing mental health needs
|
|
|
|
|
|
Very useful
|
52.5
|
62.9
|
54.8
|
|
Somewhat useful
|
44.1
|
35.9
|
37.8
|
|
Not at all useful
|
3.1
|
4.2
|
6.9
|
|
Unsure
|
0.3
|
0
|
0.5
|
Source: Australian Autism Alliance, Submission 52.2, p. 18.
14.78
According to the Autism Alliance, this reflects the 'dual burden' of health and mental health professionals who are not well-equipped to work with autistic people, as well as limits on publicly-funded mental health care. This appears to align with the more commonly mentioned challenges to accessing appropriate mental health care, which include:
the cost of mental health treatment;
a lack of autism knowledge and understanding; and
disconnected service systems.
The cost of mental health treatment
14.79
Currently, the Better Access initiative provides Medicare benefits for mental health services provided by GPs, other medical practitioners, psychologists, social workers and occupational therapists. Eligible patients can receive up to ten individual and ten group allied mental health services per calendar year.
14.80
However, the Autism Alliance noted that high rates of co-occurring mental health conditions means that autistic people and their families are left with 'the impossible choice between rationing appointments to spread access across the year or facing ruinous out-of-pocket costs to maintain care'. Indeed, according to an Autism Alliance survey, 78 per cent of autistic adults reported that cost was the reason they had not received support for their mental health condition, while more than 46 per cent said they lacked the funding to access mental health services.
14.81
While the Autism Alliance noted that this issue was not limited to the autistic community, it argued that the 'cost burden is disproportionately felt given their high rates of mental ill-health and low rates of employment and workforce participation'. UNSW 3DN expressed a similar view and argued that the current structure of the MBS 'does not enable general practitioners and psychiatrists to support the health needs of people on the autism spectrum with more complex health needs'.
14.82
As a result, the Autism Alliance supported the recommendations made by the Mental Health Reference Group as part of the Medicare Benefits Schedule (MBS) Review. These recommendations included extending the Better Access initiative for at-risk patients, increasing the maximum number of sessions per GP referral, introducing a tiered system for patients with a diagnosed mental illness (with more sessions available to those with higher needs), and enabling families and carers to access therapy. However, most of these recommendations were not endorsed by the MBS Review Taskforce for Government consideration.
14.83
Similarly, UNSW 3DN recommended that MBS item numbers be reviewed to ensure 'financial viability for health care providers working to meet the needs of people with complex needs, including people with autism and co-occurring health and mental health issues'.
Autism knowledge and understanding
14.84
As noted by Aspect, 'it is critical that individuals on the autism spectrum are able to access mental health services with staff who have an understanding of autism'.
14.85
However, mental health care services for autistic people are currently compromised by a lack of autism knowledge and understanding among the mental health care workforce. For example, according to the results of an Autism Alliance survey, of those autistic adults who had seen a mental health practitioner in the preceding 12 months, only 55.4 per cent rated the autism knowledge and understanding of their mental health practitioner as good, while 28.4 per cent rated as okay and 14.4 per cent rated it as poor. In addition, 68.8 per cent of autistic adults said that it was 'difficult to find a mental health practitioner who understands autism; and difficult to find a mental health practitioner who understands their specific situation'.
14.86
As with general health services, this lack of knowledge is likely to contribute to diagnostic overshadowing. For example, the NSW Government recognised that mental illness can be difficult for clinicians to identify, with 'diagnostic uncertainty and overshadowing' creating barriers to mental health care.
14.87
A lack of knowledge and diagnostic overshadowing can also feed the misconception that mental ill health is an intrinsic characteristic of autism. For example, the University of Queensland and RMIT commented that 'health professionals incorrectly consider mental health issues an inherent part of autism, when in fact much mental illness in autism is a consequence of an absence of understanding and acceptance'. A similar view was expressed by a psychologist whose autistic son who took his own life in July 2020:
I am a psychologist and I believe have been ignorant as are many medical and allied health practitioners. For example, it does not necessarily follow that autistic people get depressed because they are autistic. There are higher correlations, certainly, but perhaps we accept it as inevitable rather than unusual or urgent. We accept it too easily. Many of us just think that it goes with the territory. This stops us from asking more questions and delving deeper into whether it is an endogenous (brain based) depression or a reactive one (the circumstances of your life are tough). This is vital. When an endogenous depression is met with a lot of behavioural intervention, encouragement and well meaning pep talks, the sufferer may feel even more hopeless.
14.88
According to OTARC, this situation may be exacerbated by a lack of appropriate diagnostic tools—given that the current tools for diagnosing mental health conditions are designed for non-autistic people. The use of existing tools may be problematic because autistic individuals can experience symptoms differently or they might understand or answer questions in an unfamiliar way. Also, clinicians may misinterpret symptoms of autism as features of a different clinical condition, or may overlook co-occurring conditions, assuming they are part of autism.
14.89
In some cases, an autism diagnosis has repeatedly resulted in autistic people being excluded from mental health services, including Headspace and Orygen Youth Mental Health (Orygen).
14.90
The apparent inability of mental health services to address the needs of autistic people with co-occurring mental health conditions is particularly concerning given autistic people's vulnerability to suicide. One mother recalled her distress at hearing the head of Orygen on radio encouraging early detection of mental health issues to prevent suicide, given that a few days earlier Orygen had determined that they couldn't help her son as his was a "disability" issue, not a "mental health" issue. As she explained:
I'm not sure how receiving text messages from your 18 year old son threatening to kill himself, drink poison, or throw himself under a truck can be classed as 'disability' more than 'mental health'.
I'm not sure how the need … for the CAT team to take my then 15 year old son to the hospital after threats of suicide and harm to others can be classed as 'disability' more than 'mental health'?
But I can tell you that this is our experience, and that this is also the experience of others—just like in education and in housing and in employment, there doesn't seem to be a 'place' for autistic people who are also experiencing mental health issues.
14.91
As noted by St Vincent's, this can be a particular issue for autistic people with highly complex needs, who 'are not identified as eligible for a mainstream mental health service as they do not meet the diagnostic criteria'. In some cases, their severe behaviours (that may or may not be related to mental health problems) can leave them without appropriate accommodation options and they are placed in mental health units or medical wards under the care of clinicians who often have 'little or no understanding' of autism.
14.92
According to OTARC, the issue is twofold. Firstly, mental health professionals feel unqualified to work with autistic people and, secondly, autism specialists are not well-trained in mental health treatment. A similar view was expressed by the Autism Alliance which noted that mental health professionals experienced a lack of autism training, as well as a lack of accessible information and guidance for supporting autistic people with mental health conditions.
14.93
More than one submitter highlighted the need to build the skills of mental health practitioners to better support people with autism. For example, Different Journeys reported that an audit of Orygen clinicians' knowledge and confidence showed that they found the care of autistic individuals with co-occurring psychiatric conditions to be 'challenging'. In addition, they reported 'low confidence in providing interventions, and perceived less progress during episodes of care than when working with neurotypical young people'.
14.94
Similarly, St Vincent's pointed to analysis of referrals to the Victorian Dual Disability Service that showed that mental health services have 'considerable difficulty' differentiating between disorders. It argued that significant expertise would be required to provide autistic people with an acceptable standard of care:
Difficulties with communication, atypical presentation of mental health problems, challenges with assessment and diagnosis, and the need for a modified approach to treatment and management means that significant reasonable adjustments to practice, a high level of psychiatric expertise, and a good understanding of autism by clinicians is needed to provide this vulnerable population with the same standard of health care as afforded to the general population.
14.95
According to the Autism Alliance, the need to upskill health providers has also been recognised internationally. For example, clinical guidelines in the United Kingdom contain:
recommendations regarding the necessary knowledge and understanding of autism for relevant staff supporting autistic people;
considerations regarding advice that should be sought; and
possible adaptations to behavioural and clinical interventions.
14.96
As a result, a number of submitters advocated for more training for mental health practitioners. The Autism Alliance proposed mandatory, quality‑controlled 'training in autism for all public and private mental health services'. Similarly, Aspect recommended autism training for 'frontline workers in mental health', while the OPA Victoria suggested that mental health practitioners 'undertake professional education about Autism Spectrum Disorder and its interaction with mental illnesses, especially anxiety and depression'. Likewise, St Vincent's recommended including autism content in relevant undergraduate training courses, upskilling current clinicians and introducing mandatory training in autism and mental health for all frontline mental health staff.
14.97
The Autism Alliance also suggested introducing an accreditation scheme to make it easier for autistic people to identify 'mental health practitioners with proficiency in autism'.
14.98
To this end, the NSW Government highlighted work underway to improve mental health care for people with disability, including people with autism. This includes development and implementation of The Guide: Accessible Mental health Services for People with an Intellectual Disability and the Intellectual Disability Mental Health Core Competency Framework and Toolkit for Mental Health Professionals. These tools are designed to support the development of skills and resources in the mental health system to better meet the needs of people with intellectual disability and cognitive impairment.
Disconnected service systems
14.99
As noted by St Vincent's, it is often impossible to differentiate between mental illness and developmental disability, meaning that they 'require a coordinated collaborative approach between services'.
14.100
Despite this, the committee heard that a disconnected service environment continues to perpetuate poor service provision for autistic people with mental health conditions. For example, St Vincent's suggested that 'limited collaboration' between the NDIS, public mental health services, primary health, and private providers leads to inadequate support or considerably delayed services. This situation was summed up by Different Journeys:
Anxiety is a mental health condition … that is intertwined with autism, yet no expert in the world has been able to identify how to separate autism from the anxiety. Nor can the individual separate their autism from their mental health condition ... However, it appears services can—the disability sector generally identifies the autism but not the mental health … stating it is a medical issue, and the mental health professionals advise it is too complex and often do not assist. The … NDIS contributes to this argument, often advising mental health is medical and therefore they are not funded by the NDIS. However, community mental health services will not assist the person as they are in receipt of NDIS. Often the community mental health provider does not understand that the individual has not been funded for psychosocial disability or will refuse access due to their belief that autism and mental health conditions are too complex, without any consideration for the autistic individual or their families.
14.101
This situation was also observed by Aspect which agreed that some autistic people have been declined mental health services 'if they are also accessing NDIS funded supports (even though the presenting issue is a mental health issue)'. At least one submitter also noted the 'extraordinary' pressure that this disconnected service environment places on parents and carers.
14.102
According to St Vincent's, this situation is also compounded by the limited and fragmented specialist services that are available. A similar view was expressed by another submitter:
…there seem to be very few crossover areas and specialists that can work with both conditions at the same time. This may be due to the fact that there hasn't been enough research done in this area. It may be because there are not enough specialists available. Certainly it is because there is a disconnect between the sectors of mental health and disability, and this must be rectified.
14.103
As a result, ND Australia recommended 'funding relevant pathways for mental health services, as well as appropriate education and training for professionals, so these vulnerable people are not turned away and are able to access the help they need'.
14.104
St Vincent's—which runs the Victorian Dual Disability Service (see Box 14.5)—proposed introducing state-wide services for autism and mental health that could provide 'specialised assessment, treatment planning, and interdisciplinary interventions for those with multiple complex needs, or in situations where there is controversy over diagnosis or management'.
14.105
To this end, the NSW Government indicated that it has invested $4.4 million over four years for people living with an intellectual disability who need treatment for mental illness. This funding provides access to a specialist service, where people can be assessed and supported by clinicians who are experienced in the care of people with both conditions.
Box 14.5: Victorian Dual Disability Service
The Victorian Dual Disability Service (VDDS), located at St Vincent’s Hospital Melbourne, is a specialist state-wide mental health service for people with neurodevelopmental disabilities (including autism) aged 16 years of age and over.
The VDDS works with mental health services and the NDIS across Victoria to provide assessment and consultation in relation to developmental disability mental health. The VDDS also provides education and training for mental health clinicians and disability sector workers. The VDDS vision is that people with developmental disabilities should have access to the best possible mental health care and the service works with consumers, families, carers, and service providers to help individuals achieve the highest attainable standard of mental health and wellbeing.
A review of individuals referred to the VDDS over 2015–2019 found that autistic people comprised 23 per cent of those referred to the service and that this population had significant multiple complex needs—including high rates of concurrent mental and behavioural disorders—but that they experienced difficulty accessing appropriate mental health services.
Source: St Vincent's Health Australia, Submission 72, p. 2.
Committee view
14.106
Autistic Australians have a life expectancy more than 20 years shorter than the general population. Unbelievably, there appears to be very little acknowledgement of this outside the autism community and no dedicated plan to improve autistic people's health outcomes. As some stakeholders suggested, this situation simply would not be tolerated for any other group in society.
14.107
As with other sectors, health services are not well prepared to meet the needs of autistic people. The committee notes that the need to increase the capability of providers to meet the needs of people with disability is an identified policy priority under Australia's Disability Strategy 2021–2031.
14.108
The current lack of capability in relation to autistic patients appears to be driven largely by poor autism understanding, which results in diagnostic overshadowing and inappropriate treatment approaches, as well as a scarcity of autism-friendly health care environments. There also appears to be a lack of data and evidence that could help monitor and improve outcomes. This includes:
a lack of routine analysis and reporting of population health outcomes, including health status, service utilisation, and mortality data;
insufficient understanding of the risk factors, causes and presentation of co‑occurring conditions, including intellectual disability and mental health conditions;
a lack of evaluation of clinical interventions; and
a lack of understanding of autistic people's experiences and interactions with the health system.
14.109
While the committee heard accounts of individual practitioners who provided autism-friendly health care, there were also numerous accounts of autistic people suffering unnecessarily due to treatment approaches or care settings that were not adjusted to meet their needs. In some cases, this reflected a lack of knowledge about the specific needs of autistic patients. However, the committee was also disturbed to hear that some providers are actively ignoring, refusing or ridiculing patient requests for adjustments.
14.110
A lack of knowledge also leads to diagnostic overshadowing, meaning that autistic people deal with unrecognised and untreated medical conditions because clinicians do not know any better, or because these cases are simply too complex. This is a particular issue for co-occurring mental health conditions. The committee heard devastating accounts of autistic people being turned away by both disability and health services because they did not feel equipped to deal with both autism and mental health issues. Even more concerningly, autistic people are being released from psychiatric care with no plan for ongoing support. While this is a problem that affects the mental health sector more broadly, it is particularly concerning for autistic people who may lack the ability to understand what is happening and to care for their own health.
14.111
Accordingly, the committee believes there is a need for better training about autism, beginning in undergraduate courses and extending through to ongoing professional development for health professionals. This is particularly relevant for mental health service providers and all frontline staff, including paramedics and hospital emergency department staff.
14.112
However, training alone is not sufficient, particularly in hospital settings which have been described as especially challenging for autistic people. To this end, there is a need for state and territory governments to support hospitals and public health care settings to improve the experience of autistic people in their care. This could include guidance about reasonable adjustments or the use of autism liaison officers to facilitate treatment in a range of health care settings.
14.113
Given the complexity of the health care system and the breadth of issues identified over the course of this inquiry, the committee believes there is a need for a national roadmap to improve health services for autistic people. This could be modelled on the National Roadmap for Improving Health Services for People with Intellectual Disability. This roadmap should also be accompanied by an associated National Autism Mental Health Plan aimed specifically at improving the treatment of autistic people with co-occurring mental health conditions.
14.114
At the same time, there is a need to make sure that the needs of autistic people are explicitly addressed in all national health and mental health plans.
14.115
The committee recommends that the Department of Health work with the taskforce established to develop the National Autism Strategy to develop a National Roadmap for Improving Health Services for Autistic People, similar to the National Roadmap for Improving Health Services for People with Intellectual Disability. This roadmap should include, but not be limited to, actions that address:
best practice models of care for autistic people, including mental health care;
the alignment of Medicare Benefit Schedule items with best practice models of care for autistic people;
reasonable adjustments for autistic people in health care settings;
the availability and appropriateness of tools and resources to support diagnosis of comorbidities (including mental health conditions) and the provision of reasonable adjustments for autistic people in health care settings;
better connections between health care service sectors, including mental health services, disability services and the National Disability Insurance Scheme;
the elimination of restrictive practices in health care settings; and
improved autism education and training for health professionals.
14.116
The committee recommends that the new National Roadmap for Improving Health Services for Autistic People include an associated National Autism Mental Health Plan aimed specifically at improving the treatment of autistic people with co-occurring mental health conditions. This Plan should also align with the National Mental Health and Suicide Plan.
14.117
The committee recommends the Australian Government work with state and territory governments and relevant stakeholders to encourage hospitals and public health care settings to adopt measures to improve the experience of autistic people in their care. This may include measures such as providing guidance about reasonable adjustments or employing autism liaison officers to facilitate health care services for autistic people.
14.118
The committee recommends that the health and wellbeing priority under the new National Autism Research Framework include a focus on:
routine analysis and reporting of population health data for autistic people, including health status, health service utilisation, health outcomes and mortality data;
the risk factors, causes and presentation of comorbidities; and
evaluation of health and mental health interventions for autistic people.
14.119
While the NDIS has been beneficial for many autistic people, the committee recognises that it has added another layer of complexity in terms of service access. The committee heard that parents and carers are not interested in who provides the service or which system funds it—they simply want a 'one‑stop‑shop' where they can go to access support. The committee supports calls for the implementation of integrated models of care for autistic people, as well as clearer clinical pathways to help autistic people navigate the mainstream health services.
14.120
Encouragingly, the committee heard that some states are piloting specialised services for autistic people that provide a one-stop-shop approach. However, there is a concern these are focused on people in crisis or who have experienced a failure in the system. These should be more widely available and available earlier.
14.121
In addition, the committee notes that the Disability Discrimination Act 1992 requires information to be provided in a non-discriminatory, accessible manner. However, a lack of understanding means this does not always happen for autistic people. It is hard to believe that autistic people—who often have cognitive, communication and adaptive functioning challenges—are required to navigate the health care system without adaptions to the content or form of available information. The committee suggests that this could be remedied by the provision the development of a national standard for information accessibility which could help service providers more easily adapt information for autistic individuals.
14.122
The committee recommends that the Australian Government work with state and territory governments and relevant stakeholders to develop and widely promote clinical care pathways to help autistic people navigate the health care system, including mental health services.
14.123
The committee recommends that the Australian Government work with state and territory governments and relevant stakeholders to implement specialised care models targeted to meet the needs of autistic people, including mental health care needs. These models should offer tiered services and supports that are available to autistic people and their families throughout their health care journey, with a particular focus on mental health services and on preventing individuals and families from falling through the cracks between systems or reaching a crisis point.
14.124
The committee recommends that a national standard for information accessibility be developed under the auspices of the National Autism Strategy. This standard should align with existing accessibility standards but should also be tailored to meeting the needs of autistic people.