Rebecca Bundy, Laura Crane and others discuss the results of a study exploring the effects of Covid-19 on the mental health of autistic adults, focusing on the early stages of the pandemic. 

During the Covid-19 pandemic, high levels of depression, anxiety and stress were reported among the general public. Yet we know much less about the impact of Covid-19 on the mental health of autistic people. 

Our research team investigated how the mental health of autistic adults in the UK changed during the early stages of the Covid-19 pandemic (in early 2020). We wanted to find out two things:

• what the effect of the Covid-19 pandemic was on the mental health of autistic adults in the UK
• what helped or hindered autistic adults’ mental health during this time.

To take part, participants needed to be 18 years or older and either formally diagnosed or self-identified as autistic. We felt it was important to include self-identified autistic people, as we know there are lots of barriers to accessing an autism diagnosis in adulthood.     

What we did

We asked autistic adults to complete an online survey at two different time points:  

• time 1 (between February and April 2020)
• time 2 (between May and July 2020). 

In the survey, participants told us about themselves, for example their gender identity and their age. They also completed a questionnaire called the Depression and Anxiety Stress Scales (DASS-21), which is used to measure people’s depression, anxiety and stress. When participants repeated the survey for a second time (time 2), they answered these questions again and also answered some questions about the effects of the pandemic on their mental health.

In total, 133 autistic adults completed the survey at both time 1 and time 2. Of the participants who completed the time 1 survey, 70 happened to do so just before the onset of the national lockdown on the 23rd March 2020. We thought it would be interesting to look at potential mental health changes from this group of participants, so we did some specific analyses to look at information from these 70 autistic adults at time 1 and time 2. All 133 autistic adults gave detailed descriptions of their experiences of the pandemic. 

What we found

While many autistic adults told us that their mental health worsened because of the pandemic, people’s experience varied. 

Many participants reported increases in sadness, anxiety, and stress related to Covid-19 and lockdown restrictions. However, for some autistic adults, aspects of mental health such as anxiety and stress appeared to improve from before the pandemic to 10-15 weeks into the first lockdown. 

Importantly, there was a lot of variability, and a significant minority of our autistic participants experienced increases in stress, anxiety and depression during the pandemic.  

Giving detailed descriptions of their lived experiences during the pandemic, our autistic participants described their social world changing, at home and in the outside world. These experiences were variable for our participants, as is detailed in the quotes below.

In relation to social changes, one participant reported: 

“This has caused loneliness and a sense of meaninglessness in my life as despite my social anxiety I strongly want to feel connected to people, something which the current isolation has denied me”. 

However, another participant felt differently about social changes, and stated:

“Often I struggle on my own and feel bad I can't just 'do normal' like other people. It's validating to be struggling alongside others for a change” .

Participants spoke of feelings of uncertainty during the pandemic. They also discussed how they felt the pandemic had impacted on their sensory world and some of their previous coping strategies. Again, this was variable among participants. One participant stated: 

“Noise from the neighbours being constantly home and in their garden, having parties, screaming kids etc. means having an open window increases the noise, but closing it means I am too hot. The noise and heat both overload my senses and I feel like screaming”

While a further participant reported: 

“I have not had any meltdowns since lockdown. I believe this is because I am working from home, no commute, no bus, no open plan office, no shopping centres. No sensory overload”. 

Finally, participants told us about their difficulties in accessing healthcare services and food during the early stages of the pandemic. For example, one participant stated: 

“It feels like too much to deal with, made worse by no guidance or support services at all. We are trapped and frightened and feel entirely alone”

Taken together, our results suggested that a key factor associated with a better outcome during the pandemic was being able to shape the environment to fit with the individual’s needs. This gave them comfortable levels of social and sensory input, and opportunities to pursue preferred activities and routines. 

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

Conclusion and recommendations

Our findings suggest that there was variability in autistic people’s mental health as a result of the early stages of the pandemic. The pandemic appeared to have both beneficial and negative effects on autistic adults. For example, sometimes a factor was beneficial to one person but problematic for another. There was a subgroup of autistic adults that experienced worsening depression, anxiety and stress during this time. 

Recommendations for further research

We acknowledge that this research was conducted during very early stages of the Covid-19 pandemic (10-15 weeks into the UK’s first national lockdown). Further research is required, both while the pandemic is ongoing and once it declines, to determine any long-term effects. 

Further information

Bundy, R et al. (2022). The impact of early stages of COVID-19 on the mental health of autistic adults in the United Kingdom: A longitudinal mixed-methods study. Autism