Autistic individuals are at a significantly higher risk of experiencing co-occurring mental health conditions compared to the general population (Murray et al., 2019; Kent et al., 2017; Thomas et al., 2017; Uljarević et al., 2020; Hollocks et al., 2019; Lin et al., 2018).
Research indicates that up to 46% of Autistic adults report current clinical anxiety or depression, a stark contrast to the 26% prevalence observed in the Australian general population. There is evidence that Autistic people are more likely than non-Autistic people to experience conditions such as generalised anxiety, obsessive compulsive disorder, bipolar disorder, and major depressive disorder, and that these conditions are common across the lifespan (Lai et al., 2019; Uljarevic et al., 2019).
Diagnostic challenges
However, here’s where things become tricky. The tools clinicians use to diagnose mental health conditions are often tools designed for use among non-Autistic people. The use of these tools can lead to challenges, as Autistic individuals may experience symptoms differently or have a different way of understanding questions. For example, symptoms that are associated with anxiety among non-Autistic people, may be a sign that the Autistic individual is experiencing sensory over-stimulation rather than an anxiety disorder. It is also possible that clinicians unfamiliar with autism may misinterpret symptoms of autism as features of another clinical condition. Conversely, clinicians may ignore or overlook co-occurring conditions, assuming it is part of autism, an issue known as diagnostic overshadowing. Dr Erin Bulluss, Autistic psychologist articulated this well at the 2021 Australasian Society for Autism Research “Health, Wellbeing and Suicide Prevention in Autism” Conference and Roundtable (Hedley et al., 2022):
Autistic burnout is one of the very commonly missed and misdiagnosed autistic experiences; most of the markers of burnout are also markers of depression. Clinicians who are not aware of autistic burnout… will miss autistic burnout and are likely to misdiagnose autistic people with depression instead.
— Dr Erin Bulluss, Autistic psychologist
Furthermore, standard mental health screening instruments may have reduced sensitivity when used with Autistic people (Kerns et al., 2014 & 2021).
To address these challenges, researchers have emphasised the need for (Lai et al., 2019; Uljarevic et al., 2019):
- mental health evaluations for Autistic adults
- diagnostic tools designed to identify mental health conditions among Autistic people
- therapies explicitly designed for Autistic people.
In the past five years, OTARC have examined the validity of three mental health assessment tools for Autistic people with the Autism Cooperative Research Centre (Autism CRC):
- Hospital Anxiety and Depression scale (HADS) – our findings suggest that HADS provides a reliable and valid assessment of anxiety and depression in Autism.
- Patient Health Questionnaire – 9 (PHQ-9) – our findings suggest that the PHQ-9 is a useful tool for autism research allowing comparison across Autistic and non-Autistic participants for depression.
- Brief COPE – our findings support its usefulness in assessing coping strategies in response to stress in Autistic Adults.
Additionally, in 2024, an international research team including Dr Darren Hedley, published a paper about the development and prelim validation of the Suicide Assessment Kit-Modified Interview (SAK-MI).
Contributors to poor mental health
While diagnostic challenges pose significant hurdles, other contributing factors such as delayed diagnosis, social exclusion, and stigma further compound the mental health difficulties Autistic individuals face. Research indicates that several key factors likely contribute to the significantly increased risk of poor mental health experienced by Autistic people.
Autism specific factors
Late autism diagnosis– can have profound effects on an individual’s mental health. Delayed diagnosis often means a lack of access to timely supports and interventions during critical periods such as childhood and young adulthood. This delay can impact social identity, contribute to challenges in understanding and navigating life’s difficulties, and result in high levels of social isolation. Compared to the general population, those diagnosed later in life often experience a poorer quality of life, as well as diminished mental health and wellbeing. Women in particular may experience significant challenges to accessing a diagnosis in Australia.
There is also evidence that individuals with higher Autistic traits have a higher chance of experiencing mental health challenges (Uljarević et al. (2020); Bentum et al., 2024). For example, higher levels of social communication differences predict poorer tolerance of distress and higher levels of anxiety.
Cultural and social exclusion factors
- Discrimination, stigma and othering (viewing or treating a person as intrinsically different.)
- Minority stressors, including everyday discrimination, internalised stigma, and concealment.
- Bullying in the general population is associated with higher depression symptoms. In Australia, bullying is particularly common among Autistic youth, with (50%) and without (58%) a co-occurring intellectual disability.
I had never heard the verb ‘‘othering.’’ Then one day a senior academic, who I had been working with for several years, asked me to participate in his talk. I stood on the stage as I was introduced to the packed conference: ‘‘This is Cos, an Autistic adult.’’ So there I was, a woman in late middle age, fully equipped with white hair and breasts; yet apparently this needed stating, out loud, to my face, in front of an audience. I was being shown off as a specimen and I was mortified. Nobody else was introduced as an adult, as people are assumed to be adults, unless they are children.
— Cos Michael
Quote from the published article ‘Is Being Othered a Co-Occurring Condition of Autism?’
What next?
Addressing the mental health needs of Autistic individuals requires a comprehensive and empathetic approach that acknowledges the unique challenges Autistic people face. By developing and utilising diagnostic tools and therapies specifically tailored for Autistic people, that have been developed by and alongside Autistic people, we can better support their mental wellbeing.
One example of this taking place at OTARC includes a collaboration with ACTUALISE Lab, a lab run by Dr Lauren Lawson, Dr Eric Morris and Emeritus Professor Amanda Richdale. This project involved development of a new approach to supporting Autistic people experiencing poor sleep – SLEAPI. Insufficient sleep can have a negative effect on multiple aspects of physical and mental health, can impair daytime functioning, and is strongly associated with suicide behaviours (e.g. Bernert & Joiner, 2007; Bernert, Kim, Iwata, & Perlis, 2015). SLEAPI was co-developed with Autistic people, and uses Acceptance and Commitment Therapy for insomnia (ACT-i) combined with behavioural therapy, to treat insomnia in Autistic adults. We evaluated SLEAPI, finding that 75% of participants had clinical improvement in insomnia symptoms post-intervention and 63% had clinical improvement in insomnia symptoms at 2-month follow-up. Anxiety also improved.
Continued research and innovation are crucial, and as we move forward, it is essential to foster inclusive environments, challenge stigma, and ensure that every Autistic person has access to the care and support they need.
First published November 2019
By Dr Bec Flower and Dr Rachel Jellett, OTARC Postdoctoral Research Fellows originally published https://www.altogetherautism.org.nz/five-areas-of-autism-research-to-watch-adulthood/
Updated November 2024
By Alex Haschek, OTARC Analytic Officer using content from:
- Hedley, D., Haschek, A., Brown, C., Batterham, P., Dwyer, P., … Wilson, J. (2024). Suicide in autism: Research evidence and policy brief. Content warning: This document contains mention of suicide.
- Richdale, A., Hedley, D., Haschek, A., Chetcuti, L., Radovini, A., Saunders, F., Ball, R. C., Bury, S., Mantzalas, J., Fisher, C. A., Stokes, M., Lawson, L., & Morris, E. (2021). La Trobe University response to the Select Committee on Mental Health and Suicide Prevention (Version 2). Content warning: This document contains mention of suicide.
