Autistic adults are vulnerable to many types of negative life experience, including employment difficulties, financial hardship, domestic abuse and ‘mate-crime’, according to new research published today in the journal Autism Research.
This research highlights the challenges that autistic adults face in our society. With the right support many of these events are preventable
These negative life experiences could partially explain higher rates of anxiety and depression symptoms and lower life satisfaction in autistic adults compared to non-autistic adults.
Mental health conditions, such as anxiety and depression, are extremely common in autistic adults. Negative life experiences increase the risk of anxiety and depression in the general population, yet few studies have investigated whether vulnerability to these types of experiences might be responsible for higher rates of depression and anxiety and autistic adults.
One barrier to investigating vulnerability in autism is the lack of suitable measures. The research team, based at the University of Cambridge, Autism Research Centre, therefore developed a new measure called the Vulnerability Experiences Quotient (VEQ).
The team worked with an advisory group of autistic adults to develop the measure to ensure that it included experiences that autistic people felt were relevant to them. The VEQ asks participants whether they have experienced 60 negative life events, across a wide variety of settings, and including both adulthood and childhood experiences.
426 autistic adults and 268 non-autistic adults completed the VEQ via an online survey. The two groups had similar levels of educational attainment and the majority of autistic adults did not have intellectual disability. The autistic participants reported higher rates of 52 of the experiences in the VEQ.
This included items relating to financial hardship: 45% of autistic adults said they had had a period of life without enough money to meet basic needs, compared to 25% of the non-autistic adults; domestic abuse: 20% of autistic adults that had been in a relationship had been sexual abused by their partner, compared to 9% of the non-autistic adults, and ‘mate-crime’: 70% said they had been bullied by someone they considered to be a friend, compared to 31% of the non-autistic adults.
Participants also completed measures of anxiety and depression symptoms and a brief life-satisfaction scale. Autistic adults reported higher levels of depression and anxiety symptoms and lower levels of life satisfaction.
Those individuals with the highest number of negative life experiences on the VEQ also experienced the highest number of current anxiety and depression symptoms and the lowest current life satisfaction.
Although this study cannot prove that these negative experiences cause depression, anxiety or lower life satisfaction, as these are just associations, these findings are consistent with the idea that vulnerability to negative life experiences is partially responsible for higher rates of anxiety and depression and lower life satisfaction in autistic adults.
Lead author Dr Sarah Griffiths, said: “This research highlights the challenges that autistic adults face in our society. With the right support many of these events are preventable. We need to ensure that all autistic adults have appropriate support to reduce their vulnerability and to improve their mental health outcomes.”
Dr Carrie Allison, one of the Cambridge research team said: “The results of this study are a wake-up call indicating the serious extent of negative experiences that autistic adults suffer in most areas of their lives. This study focused on intellectually able autistic adults due to the online survey method. Future work will focus on adults with intellectual disability who may have a different set of vulnerabilities.”
Professor Simon Baron-Cohen, director of the Autism Research Centre at Cambridge, said: “This research is vital to inform Government policy makers worldwide about the appalling violations of autistic people’s human rights. Our next step will be working hard to translate these findings into new policies, such as the need for every autistic person to have a life-long support worker to whom they can turn to help them navigate the world”.
Clara, an autistic adult from London commented on the study: “This research is so important to me. Despite being intelligent and good with people, I’ve had too many negative challenging situations in my life – with work, close relationships, access to health, social services, and education. It has affected, and continues to affect my mental health”
This study was funded by the charities Autism Research Trust and Autistica. The research also benefited from funding from the Queen Anne’s Gate Foundation, Mishcon de Reya LLP with support from Gesher School, the NIHR CLAHRC East of England and the IMI AIMS2TRIALS.
Griffiths, S., Allison, C., Kenny, R., Holt, R., Smith, P. & Baron-Cohen, S. (2019) The Vulnerability Experiences Quotient (VEQ): A study of vulnerability, mental health and life satisfaction in autistic adults. Autism Research.