“Consistent Support Is Good for My Mental Health”—Exploring the Lived Experience of Autistic Mental Health

Abstract

Background:

Literature indicates that mental health of autistic individuals is substantially poorer than that of the general population. Mental illnesses, such as depression and anxiety, which contribute to high suicide rates, feature prominently in research. Few studies, however, have considered the lived experience of mental health across the lifespan, which includes the experience of positive mental health. This research investigated the lived experience of mental health of autistic adults.

Method:

We used reflexive thematic analysis, underpinned by a coproduction framework, to explore mental health experiences. Through coproduction with a steering group of autistic adults to inform the questions, we conducted semi-structured interviews with 20 Australian autistic adults, diagnosed in adolescence or adulthood.

Results:

The thematic analysis identified four main themes, including discovering autistic identity, body and mind, connections to family and community, and choice and control. Participants reported highly heterogenous life experiences, with intense experiences of mental health, both positive and negative. All participants experienced mental health challenges, and most had experienced a diagnosed mental illness. Protective factors that mitigated against mental illness included supportive environments, relationships, and positive societal attitudes.

Conclusion:

While some of the themes are universal, some of the subthemes, such as the significance of sensory input and adaptive morphing to hide autistic traits, do not feature in non-autistic mental health literature. These factors, which frequently interrelate, may be overlooked by mental health care providers. The findings of this research emphasize that in order to support positive mental health outcomes, there is a strong need for therapies and disability supports to be targeted and tailor-made to the individual.

Community Brief

Why is this an important issue?

Many autistic people experience mental illness at rates much higher than the general population. This area had been overlooked for many years. While we know that rates of mental illness are very high, not much is known about the personal autistic experiences of mental health or what can support positive mental health.

What was the purpose of this study?

Researchers wanted to hear and understand the stories of autistic adults to learn about their experiences of mental health. We especially wanted to know what helped improve participants’ mental health.

What did the researchers do?

This coproduction project included two autistic researchers, including the first author, and a steering group of five autistic community members. Twenty autistic adults volunteered to take part in interviews, sharing their experiences of mental health, both positive and negative, from across their life. The researchers analyzed and organized the stories into themes.

What were the results of the study?

All participants had very different life and mental health experiences. Even though there were differences, similar factors or themes could be seen. The project found 4 main themes and 16 subthemes. These themes could have a positive or a negative impact on an individual depending on the personal circumstances of that individual at any given point in time. The first theme, discovering autistic identity, included the impact of autism diagnosis on identity, adaptive morphing to hide autistic traits, interests providing purpose and connection, and a passion for social justice. The second theme, body and mind, included the significance of sensory input, the importance of physical health, sleep, diet and exercise, co-occurring conditions exacerbating mental health challenges, executive functioning challenges, coping mechanisms for daily life, and the long-term impact of trauma and grief. The third theme, connections to family and community, included supportive relationships as a protective factor, parenting as a double-edged sword, and the challenges of interacting with professionals. The final theme, choice and control, included the personalization of therapies, affordability and life choices, and disability support mechanisms.

What do these findings add to what was already known?

Some of the subthemes, such as the significance of sensory input and adaptive morphing to hide autistic traits, do not feature in non-autistic mental health literature. These factors may be overlooked by mental health care providers.

What are potential weaknesses in the study?

Participants were all Australian, with a majority being Caucasian, and even though verbal communication was not a requirement, all participants communicated by speaking for the interviews. All participants who volunteered were diagnosed as teenagers or as adults. More research is needed for groups not represented in this study.

How will these findings help autistic adults now or in the future?

It is hoped the findings of this research will contribute to encouraging therapists and disability service providers to ensure mental health therapies and supports are tailor-made for the individual, taking unique autistic traits into account.