‘Something Needs to Change’: Mental Health in Young Autistic Adults

Background: Given that rates of mental health problems are disproportionately high in young people generally, and that young adults display poor help-seeking behaviours, there is an urgent need to explore mental health in young autistic adults, who may be an especially vulnerable group. Indeed, the transition from childhood to adulthood is a challenging time for young autistic people in general, with high rates of bullying and victimisation, as well as low rates of post-secondary education, employment, social participation and quality of life. Particularly worrying is that even autistic adults with “good” outcomes (e.g., higher rates of employment, marriage/partnership, and independent living) show strikingly high rates of co-occurring mental health conditions.

Objectives: The aims of the current research were to: (1) investigate young autistic people’s views and experiences of mental health problems and services; and (2) identify possible ways of supporting young autistic people who are experiencing poor mental health. These aims were achieved through the use of a community-based participatory research (CBPR) approach. CBPR involves a partnership between, for example, community members and academic researchers, in which different types of expertise are valued equally, and ownership of the research is shared. In this research, a group of young autistic people from an autism charity developed a research project in collaboration with a team of academic researchers.

Methods: In total, 130 young autistic adults between the ages of 16 and 25 years took part in the research: 109 young people (M age = 20.57 years; 33 male, 56 female, 17 non-binary, 3 did not disclose) completed an online survey and 21 young people (M age = 20.90 years; 9 male, 10 female, 2 non-binary) took part in in-depth interviews. Data were collected, analysed and interpreted by the researchers and young autistic people, in partnership.

Results: Consistent with previous research, high rates of mental health problems (80.7%) were found among our sample of young autistic adults. Yet these young people reported feeling unhappy and depressed, worthless, under strain, unable to overcome their difficulties, unable to face up to problems, and lacking in confidence generally – irrespective of whether they were experiencing mental health problems. As such, they reported finding it difficult to recognise the signs and symptoms of poor mental health. More worryingly, when the young people identified that they needed support for their mental health problems, they reported high levels of prejudice and discrimination, and encountered severe obstacles (e.g., lack of available services, delays, services not tailored to their needs).

Conclusions: Young autistic people are already potentially at a disadvantage simply because society does not understand what it is like to be autistic. This research clearly suggests that young autistic people may be doubly disadvantaged due to the mental health challenges that confront them. The results have implications for improving clinical services, including: (1) more initiatives to reduce stigma associated with autism and mental health; (2) increased training for professionals; and (3) greater autistic involvement in the design and delivery of services that directly affect them.