During the Covid-19 pandemic, high levels of depression, anxiety and stress have been reported in the general population. However, much less has been reported about the impact of Covid on the mental health of autistic people.

A study, published in the journal Autism, set out to fill this gap in research by investigating how the mental health of autistic adults in the UK changed during the early stages of the Covid-19 pandemic.

The results are based on the survey responses of 133 participants, taken at two different time points. The first was before the first lockdown (wave 1), and the second was 10 to 15 weeks during lockdown (wave 2). At wave 2, participants were also asked retrospectively how they felt their levels of anxiety, stress and sadness were affected by the pandemic.

In total, 19 Covid-related questions were included in this survey, divided into four sections: (a) access to service support, (b) mental health change, (c) hardships that have affected mental health, and (d) factors supporting mental health.

While many autistic adults felt their mental health had worsened, people’s experiences varied

When analysing the retrospective reports, more than half of the participants reported increases in sadness, anxiety and stress related to Covid-19 and lockdown restrictions. However, when the researchers compared Depression, Anxiety, and Stress Scores (DASS-21) at a group level between waves 1 and 2, there was a tendency for DASS-21 scores to reduce (anxiety, stress) or stay the same (depression).

The survey results revealed that while many autistic adults felt their mental health had worsened, people’s experiences varied. As the study’s authors explain: “Our findings suggest that there was variability in how autistic people responded to the early stages of the pandemic in terms of their mental health, and that there is a subgroup that experienced worsening depression, anxiety and stress.”

With the variability of mental health response to Covid-19 consistently observed in both autistic and non-autistic adults, the researchers considered which factors determined better or worse outcomes.

Certain factors appeared to determine better or worse outcomes

A key factor associated with a better outcome appeared to be the opportunity to shape the environment to fit with the individual’s needs, such that they have comfortable levels of social and sensory input, and opportunities to pursue preferred activities and routines.

For example, a decrease in depression scores was associated with greater engagement in social activities, self-care for mental health (e.g. yoga or meditation), maintaining a routine, doing leisure activities, and regular exercise.

Participants also reported that connections with family and friends were crucial to their wellbeing - challenging the unhelpful stereotype that all autistic people prefer to avoid social connections. Furthermore, the qualitative data confirmed that many autistic people valued the opportunity to pursue their interests in lockdown, which also promoted their wellbeing.

Conversely, key pandemic-related risk factors for declining mental health appear to be disrupted access to basic needs and services, uncertainty and the economic impact of Covid-19.

Indeed, the study’s findings revealed that autistic people struggled to get some basic needs met during the lockdown, for example, access to specific foods. This group were also more likely to experience barriers to effective healthcare, with many reporting elongated waiting time for appointments and diagnostic assessments.

The results also found that a lack of clarity in government guidelines regarding Covid-19 and the pace at which they would change left participants feeling distressed and led to some further isolating themselves.

While a relatively small number of participants had experienced job losses at the time the data were collected, the results indicated that financial and employment uncertainty also contributed to distress for many.

Recommendations for improvement

The authors conclude: “With lockdown measures placing restrictions on many people’s ways of coping, the need for additional service support for the autistic community is evident from these results.”

They suggest that additional measures for the autistic community, such as including them in priority access times for supermarket entry and ensuring additional mental health provisions were in place, could have helped to preserve the mental health of this group.

With the pandemic still far from over, they warn that disparities for autistic people are “likely to widen further unless autism-specific provisions are enacted.”