Paper: "Lifetime and perceived stress, social support, loneliness, and health in autistic adults"
This paper was published in 2021, in the journal Health Psychology.
You can click HERE to download a PDF of the paper. Please note that copyright forbids us from storing the published paper here, but this is the accepted manuscript.
Keep reading to see a plain English summary, or you can watch my explanatory video!
Why is this an important issue?
Physical and mental health are markedly affected by stressful life events and the way we react to them. When an individual perceives an event or experience as stressful, it sets off a biochemical ‘stress response’ which, if prolonged, damages the body.
In the general population, the effect of stress and stressful life events have been very thoroughly mapped – it is even possible to link particular life events, called ‘stressors’ (e.g. losing a job, or being bereaved), with specific illnesses, or with maladaptive thoughts and behaviours which can be harmful in the long-term.
In contrast, very little is known about the contribution of lifetime stress to the poorer physical and mental health suffered by autistic people, or whether particular types of stressful life events are more damaging for their health.
Here is a video summary of this paper. You can open it up to large screen, and turn captions on and off by clicking the 'CC' button.
What was the purpose of this study, and what did the researchers do?
To look at stress and health in autistic people, we used an assessment tool called the Stress and Adversity Inventory (STRAIN), which has never been used in autistic samples. The STRAIN is a comprehensive interview-based measure which provides a detailed picture of potentially stressful life events that have occurred across the whole life-course. It also measures how people feel or felt about that life event – as one person may perceive something as stressful while another may not (for e.g., going on holiday can be very stressful to some people and pleasurable for others), this is very important.
In this study, we compared actual exposure to stressful life events in autistic and non-autistic people; looked at whether autistic people might experience life events as more stressful even if not necessarily experiencing more of them; and looked at relationships between stress and health (physical and mental) in both of our groups.
What were the results of the study?
We found that autistic adults experienced more of nearly every type of stressful life event!
Even when they did not experience more of these stressors (life events), they were more distressed by the stressors they experienced: that is, they experienced them as more stressful. Experiencing life events as more stressful was associated with poorer physical and mental health. Stressors involving humiliation (e.g. being bullied), entrapment (e.g. being unable to change your circumstances) and role change/disruption (e.g. being dependent on ageing parents), seemed to have an especially strong impact on mental health in autistic people.
We also looked at whether there were any features that might alleviate or worsen the impacts of stress on health. Being very lonely was associated with perceiving life events as more stressful, and with having poorer mental health. In contrast, when people had higher levels of social support, perceiving life events as stressful appeared to be less harmful for their mental health. This could be explained by the ways that social support can help people when they are stressed – for instance, if you are going through something stressful, support from others may be comforting, and this reduces the biological stress response that’s occurring in your body.
Finally, we noticed that just the fact of being autistic predicted having poorer mental health, and this effect was explained by the greater loneliness of the autistic sample.
These images show stressors (life events) grouped by their nature. The vertical axis shows how many of each kind of stressor (on average) was experienced by our participants.
Examples of the kind of stressor included in each category were:
being evicted ('Housing').
being excluded from school ('Education').
losing a job ('Work').
having a chronic illness ('Treatment/Health').
going through divorce ('Marital/partner).
struggling to get pregnant ('Reproductive').
living in poverty ('Financial').
being convicted of a crime ('Legal/crime').
family arguments ('Other relationships').
being bereaved ('Death/bereavement').
experiencing something life-threatening ('Life-threatening').
being robbed ('Possessions').
What are potential weaknesses in the study?
The STRAIN is a self-report measure which depends on participants accurately remembering events and remembering how stressful they found them. It is possible that people might remember things as more or less stressful than they actually were at the time, depending on their mental state at the time of the study. It would have been good to include other objective measures that indicate stress levels, especially biological ones (such as stress chemicals in saliva), as these would give us a better indication of mechanisms through which stressful life events affect health.
Our sample was not representative of the whole autistic population: people with intellectual disabilities were not represented, and trans, non-binary and autistic people of colour were under-represented.
If you are struggling with your mental health, you may like to look at the resources page.
Thank you for reading!
How will these findings help autistic adults now or in the future?
These findings show a relationship where experiencing more stressful life events, and perceiving them as more stressful, is associated with having poorer mental and physical health. This may, in part, be why autistic people tend to have much poorer mental and physical health than non-autistic people.
These findings highlight that societal changes are needed to address the inequalities which result in greater likelihood of stressful life events for autistic people. However, the study also suggests that it might be possible to reduce the negative impact of stress on health by helping them change their perception of life events – it was the perception of life events as stressful, rather than the number of life events experienced, which was associated with poorer mental and physical health.
The study also highlighted loneliness as a major factor in mental ill-health in autistic people. It suggested that having supportive relationships might reduce the impact of stress on health. Future research is needed to look for other features or characteristics which could make some autistic people more vulnerable to stress, and to identify the best ways to support them.