Six ideas about how to address the autism mental health crisis

The autism mental health crisis can be described with the following paradox: autistic people have a high chance of developing mental health problems but a low chance of receiving effective help. In this editorial, I outline the mental health challenges that autistic people experience under current systems of care and share some ideas about how clinicians, researchers and members of the autism community can work together to address this situation. The extent of the mental health challenges that autistic people face became clear to me more than a decade ago with the publication of a landmark paper, Psychiatric Disorders in Children With Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample (Simonoff et al., 2008). Its findings were compelling and shocking: 70% of autistic children met criteria for at least one psychiatric disorder and 41% had two or more. These very high rates of mental health difficulties were all the more striking because they were observed in a community-based sample rather than a clinic-based sample, where we might expect those with cooccurring mental health problems to be overrepresented. Since then, many studies have confirmed that autistic people experience high rates of mental health challenges, substantially higher than those found in non-autistic comparison groups in both clinical and general population samples (see Lai et al., 2019, for a systematic review and meta-analysis). This elevated risk is for the full gamut of conditions, including anxiety, depression, bipolar disorder, psychotic disorders, obsessive-compulsive disorder (OCD), sleep disorders and conduct problems. These difficulties are found across the lifespan and affect autistic people of all genders. The consequences for autistic people with untreated mental health problems include lower quality of life (Mason et al., 2019), worse employment prospects (Scheeren et al., 2021) and greater risk of premature mortality (Hirvikoski et al., 2018). Support systems for autistic mental health are, currently, not fit for purpose. I am not criticising the individuals delivering mental health services who, in my experience, are usually highly dedicated to their complex and challenging work. Rather, the lack of support for autistic mental health reflects long-standing systemic problems that result in professionals lacking the required resources and training to provide effective support to their autistic clients. In a US-based online questionnaire, a third of autistic adult participants reported having unmet mental health needs, which was twice the rate found in the nonautistic comparison sample (Nicolaidis et al., 2013). In the United Kingdom, a survey of post-diagnostic experiences of autistic adults found that 45% wanted psychological therapy for their mental health challenges, but only 22% were offered it (Jones et al., 2014). There are other indicators that mental health needs of autistic people are not well supported. Rates of psychotropic medication use are high for autistic people (Nylander et al., 2018), with the possible implication that some problems are being treated at the symptom level, with insufficient in-depth formulation of underlying difficulties and the sources contributing to these (e.g. the mismatch of individual characteristics and environmental demands). The growing qualitative literature on the experiences of autistic people in mental health services highlights that autistic people often struggle to access care and face multiple barriers to benefitting from treatment (e.g. Babb et al., 2021; Camm-Crosbie et al., 2019). Thankfully, there is growing consensus that this situation cannot persist – that services must do more to include and help autistic clients. Recently, the James Lind Alliance conducted a priority-setting exercise with more than 1000 members of the autism community (Cusack & Sterry, 2016). The exercise identified improving mental health interventions for autistic people as the number one priority for autism research. In the United Kingdom, the National Health Service (NHS) Long-Term Plan, a highly influential document that provides strategic direction to the NHS over a 10-year period, highlighted better care for autistic people, including a focus on mental health, as a priority (NHS, 2019). The World Health Organization published a resolution (WHA67.8) recognising the stigma and discrimination that autistic people face and explicitly calling out the need for better mental health care. So, there is a will to improve mental health care for autistic people. But how can this be accomplished? Here, I put forward six suggestions to contribute to debates about this crucial task.