Parents’ Experiences Caring for Their Autistic Adult Children During the Covid-19 Pandemic: A Qualitative Analysis

Abstract

Purpose:

In the wake of COVID-19 and the subsequent changes that resulted from lockdowns, restrictions, and new norms, it is important to investigate the impact that the pandemic has had on vulnerable populations, including autistic adults and their families. Using a qualitative approach, our goal was to understand the experiences of parents caring for their autistic adult children during the COVID-19 pandemic.

Methods:

We conducted semistructured, open-ended qualitative interviews with 20 parents of autistic adults, who were living with their adult children at least 50% of the time during the first year of the COVID-19 pandemic in the United States. A total of 40% of adult children had a co-occurring diagnosis of intellectual disability. We conducted thematic analysis on the transcribed interviews.

Results:

Five themes emerged from our data, describing different ways in which parents and their autistic adult children experienced changes during lockdown. Consistent with previous research, parents described many negative impacts associated with the pandemic such as changes in mood, fears of regression, and loss of important resources and experiences for both the parent and child. In addition, parents also described positive and neutral changes such as increased family time and established family patterns of staying at home.

Conclusion:

This study reveals the reality of many families caring for their autistic adult child during an international crisis and helps us to understand ways in which services may be improved in the future to better assist autistic adults and their families during challenging times.

Community Brief

What was the purpose of the article?

We aimed to describe the experiences of parents caring for autistic adults during the initial months of the COVID-19 lockdown. This included understanding how families with autistic adult children managed the changes and safety protocols prompted by the pandemic. The study explored access to community resources, parents’ mental well-being, and the overall impact of the pandemic on their lives. Importantly, we note that our goal was not for parents to speak on behalf of their adult children, but to understand a broad range of parent experiences during this time.

Why is this topic important?

The pandemic did not affect all groups of people the same way. It is important to understand the experiences of parents caring for disabled adults because: (1) they themselves are a vulnerable population at risk of poor outcomes following a crisis, and (2) caregiver resiliency is likely to have positive effects for both caregivers themselves and the autistic adults in their care.

What did the researchers do?

We interviewed 20 parents who were actively caring for their autistic adult children. Interviews explored subjects such as adapting to change, accessing services, and noteworthy pandemic-related changes. We recorded and transcribed the interviews and examined them for themes across respondents.

What were the main findings of the interviews?

Parents highlighted the interconnection between their own mental well-being and that of their autistic adult child, a bond that became more pronounced during the pandemic. Parents were concerned about COVID-related risks faced by their adult children, who often had co-occurring health conditions or difficulty comprehending pandemic-related risks. Families lamented the loss of resources and support networks due to the pandemic, which significantly impacted family dynamics. However, amidst the challenges, parents also reported positives. These included heightened family bonding and some families displaying adaptability in the face of changes.

What are the conclusions drawn by the authors?

The study showcased a range of experiences among parents caring for autistic adults during the pandemic. While some families managed to adapt effectively and maintain safety, others grappled with substantial distress due to limited resource access. The findings underscore the need for enhanced support systems for autistic adults and their families, particularly during trying times. Moreover, the long-term effects of the pandemic on this community warrant further exploration. The experiences of families who reported feeling socially isolated prepandemic due to their autistic child’s needs also shed light on the existing reality for certain autistic individuals.

How will this research benefit autistic adults now and in the future?

This research contributes to the understanding of how COVID-19 impacts vulnerable groups, including autistic adults and their parents. By identifying strengths and weaknesses in community support during crises, it paves the way for improvements in tailored services. Moreover, comprehending the challenges faced by families caring for autistic adults during the pandemic aids in better preparation to address the ongoing and postpandemic needs of this community.