Autism Snapshot

First Nations Autistic people, their kin and carers, face compounding marginalisation, including racism, over policing, and a lack of culturally safe services and supports. Further, applying non-Indigenous ways of governing, research, and care perpetuates harm on First Nations people.

Autistic people from Culturally and Linguistically Diverse (‘CALD’) communities may encounter additional obstacles in their daily lives. Culturally and Racially Marginalised (‘CARM’) people may experience multifaceted barriers, including experiences of racism, which can further marginalise them and exacerbate the challenges they already face due to their autism. Communication and language differences — including differing cultural understanding of autism — can complicate their interactions with healthcare providers and other support services, potentially leading to misdiagnosis or delayed treatment. Research gaps and gaps in culturally responsive healthcare can also delay diagnosis for CALD/CARM communities.

Autistic women, girls and gender diverse people in Australia face substantial disadvantages due to persistent misconceptions that autism primarily affects males and children, resulting in under-diagnosis and inadequate support tailored to their needs. Historical biases in research and service provision mean that many Autistic women, girls and gender diverse people are misdiagnosed or have their symptoms dismissed, leading to delayed diagnosis. Although autism is becoming increasingly recognised in girls now, many Autistic women and gender diverse people only discover their neurodivergence later in life, often after it is identified in their children or young family members. Furthermore, Autistic mothers often encounter significant barriers and discrimination when seeking support, including facing judgement and assumptions about their ability to parent, which can severely impact their ability to access appropriate care and supports for themselves and their children.

Gender expressions and Autism have primarily been viewed through a binary lens, with sex and gender being used interchangeably, instead of as distinct co-occurring facets of an identity. Autistic people are more likely to be trans, which means social, economic, and healthcare barriers and marginalisation become augmented further.

Autistic people are also more likely to be LGBTQIA+ than non-autistic individuals, [4] which compounds the barriers faced in social, economic, and health care scenarios. LGBTQIA+ autistic people face extreme isolation, and endure violence, abuse and exploitation because of their sexual/gender identities.

Autistic people with very high support and dependency needs are at higher risk of abuse, exploitation, isolation and/or marginalisation. Often, there are unique, devastating, and often unseen experiences and challenges that require solutions, for the individual and the carer.

Autistic people with very high support and dependency needs are sometimes described as ‘requiring very substantial supports’, which may also be referred to as profound autism, severe autism, severe and profound autism, profound needs, profound and multiple learning disabilities, high support needs, very significant supports, high dependency needs and requiring intensive support.

This is not the same as referring to “complex” needs. A consensus definition to refer to this cohort does not exist, in society or research¹. What terminology is used is based on their individual choice. Often the language of “profound” is used in certain situations as this is what is perceived society currently understands. For instance with NDIS, education supports and emergency situations (first responders, health).

The identified elements of “Autistic people with very high supports and dependency needs” and includes the key element of requiring 24 hour access to an adult who can care for them if concerns arise, being unable to be left completely alone in a residence, and not being able to take care of basic daily adaptive needs.

Notwithstanding these elements, it should not be assumed that Autistic people with very high supports and dependency needs do not have cognitive ability or any other elements of human capacity like feelings.

Families are crucial support networks, providing the foundational emotional, social and practical assistance needed. Families often assist with daily activities, healthcare management and educational needs, ensuring that their Autistic loved ones can lead fulfilling lives. Families navigate complex systems, such as healthcare and social services, advocating for appropriate resources and accommodations. Individuals are often heavily or completely reliant on parent or carer advocacy.

1. Dr Matthew Siegel, ASfAR Australian conference 2024 

Elderly Autistic individuals face a unique set of challenges as they age. Communication difficulties, sensory sensitivities, and social interactions can become more pronounced, exacerbating their challenges in daily life. Elderly Autistic people are at an increased risk of isolation and loneliness. This isolation can have detrimental effects on their mental health and well-being, highlighting the importance of creating inclusive communities and support networks.

Older Autistic people also experience high rates of age discrimination when searching for work¹ . While all Autistic people face the prospects of a lower life expectancy than the general population, the current older generations of Autistic people are at risk of dying even more prematurely due to factors such as lack of access to supports and a reliance on large institutional environments; where it is more common for people to die prematurely. In addition, for older people who experience intersectional disadvantage, there are a number of compounding issues which impact their experience. For example, while statistics on the rates of sexual violence experienced by older Autistic women do not exist, reports on the issue of sexual violence in aged care facilities have indicated that residents with cognitive disabilities are at higher risk². Additionally, the tendency of older Autistic women to miss social cues, experience communication difficulties and have few family and friends to report issues, makes them a target for violence in the aged care system.

^[1] Australian Human Rights Commission (2023) ‘Ageism keeping older people out of the workforce,’ Australian Human Rights Commission, Viewed 8 June 2023

^[2] See for example Knaus, C (2022) ‘Shocking rate of sexual abuse of aged care residents barely changed since royal commission,’ Guardian, Viewed 12 June 2023

As our knowledge of Autism has increased, more people are being diagnosed younger.¹ . Compared to non-Autistic children and young people, this cohort experiences disproportionate rates of bullying, harassment, discrimination, and educational exclusion. Additionally, they also face poorer education outcomes in their formative years which result in poorer employment outcomes and gaps in health, housing and other areas when compared to their non-Autistic peers. Furthermore, Autistic young people from intersecting backgrounds — such as Autistic girls from First Nations & CALD/CARM communities — face intersecting issues, such as delayed diagnosis. Taking into account that, in the past, Autistic children & young people have not been adequately consulted on the issues that impact them, it is clear that work needs to be done to ensure Autistic children and young people can access supports and services that are tailored to their needs.

^[1] Maenner MJ, Warren Z, Williams AR, et al. ‘Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years’ — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ 2023;72(No. SS-2):1–14.

Given the stigma around autism, and the (incorrect) beliefs that Autistic people do not have insight and empathy, Autistic health professionals experience workplace stress, exclusion, bullying, and burnout due to an often hostile or “ill fitting” workplace environment and misconceptions that they lack capacity to be compassionate health care providers. Autistic researchers also experience high levels of stress and burnout due to having to advocate and fight against long standing beliefs that autism is something to be “cured” and/or “fixed”, which has a significant toll on Autistic Researchers’ mental health, being immersed in literature and colleagues who still hold to, and subscribe, to this position.