Autism: Addressing the mental health needs of Autistic people

Purpose

The Royal Australian and New Zealand College of Psychiatrists (RANZCP) has developed this position statement as, in Australia and New Zealand, there are currently significant challenges and unmet mental health needs for people with Autism Spectrum Disorder or Autism (referred to as Autistic people within this document). Although individual preferences vary, the term ‘Autistic person/people’ is often preferred as ‘identity-first language’.[1-3] Autism is a neurodevelopmental condition that is evident in the developmental period, but in some cases may not be recognised until adulthood. Autism is a spectrum of conditions that can vary from person to person.[4]

Key messages

• Significant barriers are faced by Autistic people in accessing healthcare services including diagnosis.
• Particular groups, such as culturally diverse groups or those with co-morbid or those with co-morbid diagnoses, may be at a compounded risk of experiencing barriers to healthcare.
• Autistic people experience higher rates of physical and mental health conditions in comparison to people without Autism.
• An inclusive approach is required to support equitable access and equip mainstream services to meet the needs of Autistic people.
• Specific mental health needs of Autistic people must be considered in health services, systems, and practices. Health systems require specialised capacity for those with more complex needs.
• Psychiatrists aim to provide the best mental healthcare to Autistic people experiencing barriers to mental healthcare.

Introduction

Prevalence data on Autism varies.[5] The World Health Organization estimates Autism prevalence as being 1 in 100 children.[6] However, in countries similar to Australia and New Zealand, prevalence studies of Autism in children has been estimated to be as many as 1 in 44 or 1 in 66.[7, 8] Prevalence data on co-occurring Autism and psychiatric illness also varies, although existing evidence indicates that Autistic people are at a high risk of psychiatric illness.[9]

Despite high rates of psychiatric illness in Autistic people, individuals and families consistently report difficulty accessing mental health services across the entire continuum of care, including primary health, mainstream mental health, emergency and crisis support, and specialist services.

Background

Autistic people should be able to access all necessary supports to live a fulfilling and healthy life. When accessing support, Autistic people have the right to access appropriate and respectful services across all sectors which are reflective and adaptive to each person’s needs. Article 25 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) requires not only equal access to healthcare for people with disabilities but also access to healthcare specifically tailored to an individual’s disability.[10] Both Australia and New Zealand have ratified the UNCRPD and are required to meet its obligations by ensuring that Autistic people have access to quality, expert general and specialist health and mental healthcare and services.

In both the Australian and New Zealand contexts, access to specialist medical services is a major difficulty for Autistic people living with mental health conditions.[11] There are several underlying issues that contribute to this health disparity. There are many important considerations to make to improve the provision of care to Autistic people including, but not limited, to the following.

Systemic considerations

Accurate recognition of Autism characteristics

People with Autism have social and communication challenges that vary from person to person and may experience challenges in education, employment, and other aspects of life.[4, 5, 12] There is a lack of healthcare provider awareness of the atypical social and verbal communication methods and skills that people with Autism may have.[12-14] This can act as a barrier to help seeking and accurate diagnoses.[12, 14, 15]

There remains a lack of understanding of Autism and missed or misinterpreted diagnosis leads to inadequate or inappropriate treatment.[12, 13, 16] Undiagnosed adults may be treated for mental health conditions without recognition of their primary condition.[17] Early diagnosis and intervention must occur to allow Autistic children to be provided with the social and educational supports to enable them to achieve their best potential. Early intervention has also been estimated to result in significant economic benefits.[18] An improved understanding of Autism in clinicians working in mainstream services would improve experiences and outcomes for people who are or may be Autistic, particularly as referrals via mainstream services are a common pathway to adult diagnosis.[5, 15]

Systemic barriers to diagnostic and management services

There are significant systemic gaps in providing care to Autistic people, resulting in illnesses being left undiagnosed or untreated, and high mortality rates.[19] In New Zealand there are often significant delays for assessment and inconsistencies in management approaches.[20]

Anxiety and fear of stigmatisation are reported as barriers to healthcare access, in addition to previous negative experiences with healthcare providers.[12, 13] A study on pathways to adult diagnosis of Autism in Australia also found that barriers included the fiscal and temporal costs, fear of being dismissed, and confusing pathways.[15] Autistic people who are female may face additional difficulties in accessing a diagnosis.[21-23] As such, there are considerable barriers to consistent, timely, affordable and best-practice Autism diagnosis.

Autism diagnosis can occur in adulthood, and this delayed diagnosis is becoming more common due to a progressing understanding of Autism.[5, 24] Autism can be more difficult to diagnose in adulthood as it can rely on memory for developmental and medical history.[5] An Australian study found that an older age of Autism diagnosis was connected to older birth cohorts with higher levels of Autistic characteristics, and people who are female, linguistically diverse, have a family history of Autism, or history of depression.[24]

Co-morbid diagnoses

Autistic people are more likely to experience a range of both physical and mental health conditions.[4, 13, 14, 25] Psychiatric conditions such as schizophrenia are more prevalent in Autistic people.[9] Research has found that Autistic people experience low levels of social support and social isolation.[26, 27] Loneliness and social isolation are risk factors for mental health conditions such as depression.[26] Rates of self-harm are significantly higher in Autistic people.[28] There is also a higher risk of suicidality including suicidal ideation, attempts, and deaths by suicide.[26, 29] Recent research has indicated that deaths by suicide may occur between three and nine times more often in Autistic people compared to the general population.[23]

There is also emerging awareness of higher rates of conditions including catatonia, dyslipidemia, hypertension, obesity, and sleep disorders, although more Australian and New Zealand research on health outcomes of Autistic adults is required.[25, 30]

Both intellectual disability (ID) and Autism are associated with high rates of co-morbid medical and mental disorders yet have difficulty in accessing services due to a failure to consider their specific needs.[31] Autistic people with ID have been found to experience compounding disadvantage in health outcomes and service access.[31, 32]

Stigma, discrimination and exclusion

Where multiple challenges exist the compounding effect can make treatment more complex. Those with a disability are more likely to be disadvantaged in another way, such as low income, participation in employment or education.[33] This compounding disadvantage is a core policy concern.[33] It is important to acknowledge the capability, diversity and contribution Autistic people make to the community in order to address stigma and discrimination. Stigma and discrimination act as barriers to equitable mental healthcare access for Autistic people.[13]

Autistic people may experience this is a compounded way where they belong to other population groups which also experience stigma and discrimination.[16, 34, 35] For example, Aboriginal and Torres Strait Islander peoples, Māori and Pasifika peoples who are Autistic have specific cultural identities needs that require consideration when developing optimal care and support.[3, 32, 36] In New Zealand, Te Tiriti o Waitangi (the Treaty of Waitangi) places responsibilities on health services to ensure equitable outcomes for all people, including Māori and non-Māori with Autism. For more information, please see the RANZCP Position Statement 107: Recognising the significance of Te Tiriti o Waitangi.

In the justice system

Evidence has found that Autistic people may be interacting with justice systems (including police, courts, and prisons) at higher rates than those without Autism.[37] Interactions involve victim, offender, and witness roles.[37] Some evidence shows that there is an increased risk for justice system interaction where there is a co-morbid psychiatric diagnosis.[32, 38] Recent evidence shows that young Autistic people are not overrepresented in the New Zealand justice system, although differences in incarceration rates and types of offences were found.[39] There is a need to address justice system interactions for Autistic people through identification of Autism, support both within and exiting justice systems, and increasing research.[32, 37, 39]

Family/whānaua (a) members or carers

Parents, family members, whānau, whanaunga (b), and carers of Autistic children and adults may have significant involvement or responsibility for navigating support systems and interventions to address the needs of Autistic people.[40] Family/whānau and carers have a role in co-designing relevant services and support.

The family, whānau, and carers of Autistic people may also be experiencing the emotional challenges of uncertainty and frustration of navigating service gaps and long waiting periods for appointments and diagnosis and may require support. For more information, see RANZCP Position Statement 76: Partnering with carers in mental healthcare. It is important to provide supports for Autistic people themselves in addition to supports for their family/whānau or carer/s.

Solutions

Specialised services with adequate, dedicated funding are required to ensure the most effective interventions are provided. Development of specialist services is urgently needed for mental healthcare for Autistic people to 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. Autistic people may require varying levels of support from a range of sectors including health, education, employment and disability [16, 41]. The New Zealand Autism Spectrum Disorder Guideline recommends that a diagnosis is made by a multidisciplinary team.[20, 42] Multidisciplinary teams, led by specialists, provide optimal care through the development of specific treatment pathways. Specialist services are also required to provide Autism training and build capacity and improve standards of care across the health sector.

Research to increase the evidence base

There is also a lack of research that has been conducted to understand the health needs of Autistic people.[12, 25, 32]. While the Australian Bureau of Statistics (ABS) does collect some data about Autistic Australians, there is a lack of data on health outcomes.[19] Consistent data on consumer demographics, rates of co-morbid conditions, and outcomes is not currently collected in New Zealand.[20] Collection of such data is needed to gain a better understanding of interventions and towards equality of health outcomes for Autistic people.[20, 25] More research is also needed to support those diagnosed in adulthood, and to support recognition and diagnosis for people who are female and people who are linguistically diverse.[24, 43]

Policy and planning to fund equitable access

A cohesive national policy and systemic approach, including adequate funding to ensure appropriate and thorough implementation, is needed to address systemic failures to recognise and respond to the unique mental health needs of this population.[15] It is important to include the voices of Autistic people to support a more inclusive approach to policy development and service design.[21, 22]

The role of psychiatrists

The role of a psychiatrist, across all jurisdictions and contexts, is to use their specialist skills and medical expertise to achieve the highest quality of care for Autistic people, in partnership with their family/whānau or carers and other service providers. To do this, psychiatrists are equipped to undertake a range of roles including advocate, clinical leader, collaborator, and clinician delivering evidence based treatments whilst recognising the complexity of individual clinical presentations.[12, 44]

Psychiatrists play an important role in ensuring that Autistic people have access to mental healthcare. Education, training, and professional development can improve clinician’s understanding of Autism.[12, 44] The UK National Health Service trains all staff in understanding of the needs of Autistic people.[45] It is important that psychiatrists are aware of possible adjustments to practice to meet the needs of Autistic people.[46, 47] When providing services to Autistic people it is important not to make assumptions about symptoms or abilities as these differ between cases, falling across a spectrum.[4]

Psychiatrists often are required to capture the everyday challenges an Autistic person experiences as evidence for report writing required by national disability schemes such as the National Disability Insurance Scheme in Australia or the Whaikaha (Ministry of Disabled People) in New Zealand. Without a strong understanding of these challenges, the report writing and provision of evidence suffers, limiting the ability to advocate for the benefits and supports required by the person.

Improved integration and collaboration between health and disability services is required. It is therefore important that psychiatrists work across sectors to ensure that this population receives holistic care.[44] Autistic people may face challenges in education or employment due to social, learning, or communication difficulties and may require supports in these areas.[4] Additionally, Autistic people may require support for any interactions with the justice system.

Recommendations

A system which addresses the mental health needs of Autistic people will:

• Take a cohesive national policy and systemic approach including adequate funding to ensure appropriate implementation.
• Equip all health, education, social, disability, and justice services to meet the needs of Autistic people in planning, service delivery and outcomes, inclusive of specialised capacity for those with more complex needs.
• Educate and train health providers in the mental health needs of Autistic people.
• Consider the needs of Autistic people within all relevant health, mental health and disability frameworks. Integrated, multidisciplinary approaches between sectors are required.
• Include the voices of Autistic people to support a more inclusive approach to policy development and service design.
• Fund research on the specific mental health needs and health outcomes of Autistic people to support improved service planning and interventions and reduce health discrepancies.

Further reading

• Australasian Autism Research Council. Participatory and Inclusive Autism Research Practice Guides; 2022.
• Australian Institute of Health and Welfare. Autism in Australia; 2017.
• Hickey, H. & Wilson, D. Whānau hauā: Reframing disability from an Indigenous perspective. MAI Journal; 2017.
• Lilley, R., Sedgwick, M., Pellicano, E. We look after our own mob: Aboriginal and Torres Strait Islander Experience of Autism. Macquarie University: Sydney, Australia; 2019.
• New Zealand Ministry of Health. Autism Spectrum Disorder; 2020.
• New Zealand Ministry of Health. New Zealand Autism Spectrum Disorder Guideline; 2016.
• United Nations General Assembly. Convention of the Rights of Persons with Disabilities; 2007.
• Whitehouse, A., Evans, K., Eapen, V. and Wray, J. A National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia. Autism CRC; 2021.

Footnotes

a) Whānau (pronunciation: fa:no) is a Māori word used to describe an extended family group spanning three to four generations.
b) Whanaunga is a Māori word for relative or kin. It has a wider spiritual and emotional meaning that binds an individual to their marae (meeting grounds) and to their tīpuna/tupuna (ancestors).

Responsible committee: Committee for Evidence-Based Practice