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.

Background

The outbreak of COVID-19 in the spring of 2020 resulted in wide-reaching changes to the health, behavior, and routines of people worldwide. The stressors associated with this time are ongoing and have affected essentially everybody. The current study is focused on the experiences of parents caring for their autistic adult children during the COVID-19 crisis.

Recent evidence suggests that autistic adults have experienced pandemic-related change differently than comparison groups. For example, an international survey conducted by Oomen and colleagues¹ found that autistic adults reported less significant changes in their routines compared with non-autistic adults; however, compared with non-autistic adults, autistic adults reported more stress as a result of the changes in routine they had experienced. This finding suggests that even minor changes in an autistic individual’s routine related to the pandemic resulted in elevated stress for autistic people at a higher rate than non-autistic people.¹

In another survey study investigating the impacts of the pandemic on autistic youth and adults, 92% of respondents reported at least one negative pandemic-related change, compared with only 37% of respondents who reported feeling hopeful about the future,² again demonstrating high rates of stress and negative affect related to the pandemic in autistic samples. Conversely, a study published by Bundy and colleagues³ used a longitudinal mixed-methods design and found that overall, anxiety and stress declined for autistics adults across the course of the pandemic. Qualitative data from this study demonstrated that pandemic-related challenges involved adjustment to social changes, increased uncertainty, difficulty with self-regulation, and increased barriers fulfilling basic needs.³ See Scheeren et al.⁴ for a scoping review of research on autistic adults during the COVID-19 pandemic.

According to a recent longitudinal study from the United Kingdom, which surveyed quality-of-life outcomes such as living situation in 23-year-old autistic adults,⁵ approximately 5% of autistic adult respondents reported living independently, whereas about 82% of autistic adults reported living with family members in some capacity. Compared with the general prevalence of adults aged 15–34 living at home with their parents in the United Kingdom being approximately 40%,⁶ this study highlights the prevalence of autistic adults still living with their families post-high school and thus the need to understand the family and parent perspectives in the context of caring for autistic adult family members. In addition, because so many parents of autistic adults continue to care for their children into adulthood, the lived experiences of many autistic adults are likely to be fundamentally connected to their parents’ experiences, and vice versa, more so than the general population. This may be especially true of adults with the highest support needs.

Compared with caregivers of non-autistic adults, caregivers of autistic adults report lower satisfaction on multiple facets of quality of life, including physical and mental well-being,⁷ as well as increased caregiver burden. This increased caregiver burden and strain may have negative impacts on the caregiver’s psychological, behavioral, and physical well-being,⁸ which has shown to adversely impact the cared-for child in a variety of ways.^9,10 Therefore, it is important to capture the experiences of these caregivers to help inform future areas of improvement related to supporting caregivers, which will, in turn, improve the quality of care and support they are able to provide their autistic adult children.

To our knowledge, there are no published studies to date focused on the experiences of parents caring for their autistic adult children during the pandemic period in the United States. A small number of studies have reported on the experiences of parents of autistic children or mixed-age autistic people. In one of the most comprehensive of these, published in Saudi Arabia, 150 caregivers of autistic children younger than 18 completed a survey distributed to various federal and private autism organizations.¹¹ Parents reported high rates of disruption and stress related to the pandemic, both for themselves and for their autistic child. Specifically, parents were concerned about their children’s loss of routine and loss of services. Parents of autistic children reported that their families received little-to-none of their typical support services as a direct result of the pandemic, and that the quality of the services they did have access to was limited in its usefulness, resulting in behavior changes within their children, and changes in parents’ self-reported well-being. As this previous study reflects on the experiences of parents caring for a child with autism (i.e., younger than 18 years), the present study hopes to extend the wealth of knowledge around parenting during the pandemic, specifically as it relates to parents of autistic adults.

The current study uses a qualitative approach to investigate the lived experiences of parents caring for their autistic adult children during the first 14 months of the COVID-19 pandemic. Qualitative autism research is important because there is an overwhelming amount of information available about the personal experience of autistic people and their loved ones that is not otherwise accessible quantitatively.¹² 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, who are also essential stakeholders within the autism community.

Methods

Methods and results are reported following the Consolidated Criteria for Reporting Qualitative Research (COREQ) criteria.¹³

Procedures

All procedures were approved by the Institutional Review Board at the University of the Sciences. Interested parents completed a screener demographic form via Qualtrics and were selected based on eligibility. Selected parents provided consent before participating. Interviews were conducted over the telephone by a trained undergraduate research assistant, primarily by the first author of this study (K.H.), between July 2020 and April 2021. Interviews lasted 30–60 minutes and were audio recorded and transcribed. Due to the pandemic, and strict stay-at-home guidelines at the time of data collection, the setting of each interview varied for both participants and interviewers. Participants were able to complete telephone interviews in locations most accessible, confidential and convenient for them (e.g., at home, work, or in the car), and based on any COVID-19 restrictions at the time of their interview. Researchers completed interviews in private and secure locations (e.g., at home in a private room or in a secure laboratory space on-campus) dependent on local and campus COVID-19 restrictions.

Interviews followed a standard, semistructured interview guide to maximize consistency across participants while also allowing for flexibility. Interview questions were open-ended with follow-up probes that could be selected based on the participant’s individual responses. The interview consisted of nine main topics related to the parent’s, adult child’s, and family’s experiences during the pandemic (see Appendix 1 for complete interview guide). Each participant who completed the interview process was compensated with a $20 Amazon gift card, which was supported by the University of the Sciences Summer Undergraduate Research Fund.

Participants

Participants were recruited via social media advertisements and word of mouth and completed an initial Qualtrics demographics screener to be considered eligible for this study. Twenty parents completed the interview, with no participants withdrawing during or after study completion. For participants to be eligible for the study, they had to be the parent/caregiver of an adult (18 years or older) with a formal diagnosis of an autism spectrum condition (i.e., autism spectrum disorder, autistic disorder, PDD-NOS, or Asperger syndrome). The authors did not request formal documentation of autism diagnosis from participants.

Parents also had to be living with their adult child at least 50% of the time for the month preceding study enrollment, with strong enough English proficiency to complete the interview. Beyond these eligibility criteria, we used maximum variation sampling¹⁴ to select a diverse sample of participants. We recruited a sample of parents that was heterogeneous both in terms of their own demographics (e.g., race and ethnicity), and in terms of the demographics and characteristics (e.g., intellectual disability status) of their autistic adult child, to ensure we included a representative sample.

Parent participants were 51 years old on average (SD = 8.4; Range: 39–65) and 80% female (20% male). Adult children were 23 years old on average (SD = 4.3; Range: 18–34) and 20% female (75% male; 5% nonbinary). On average, adult children had been diagnosed with autism at age 7 (SD = 5.8; Range: 1.5–20). A total of 40% of the adult children had a co-occurring diagnosis of intellectual disability or mental retardation (historical), as per parent report. All families lived in the United States. Individual participant information is presented in Table 1.

Table 1.

Parent Participant and Autistic Adult Child Information

Parent Participant Characteristics				Adult Child Characteristics
ID #	Age	Gender	Race/Ethnicity	Age	Gender	Co-occurring ID
1	59	Female	White	20	Nonbinary/other
6	43	Female	White	22	Male	Yes
7	60	Male	White	22	Male
8	46	Female	White	18	Female	Yes
10	58	Female	White	29	Female	Yes
12	57	Female	White	21	Male
13	45	Male	Black or African American	19	Male	Yes
17	57	Female	White	24	Male
18	59	Female	White	34	Male
20	45	Female	Hispanic or Latino	18	Male
25	55	Female	White	24	Female	Yes
27	46	Female	White	22	Male
39	46	Female	American Indian or Alaskan Native; White	26	Male	Yes
41	65	Female	White	29	Male
46	51	Female	Black or African American	23	Male	Yes
51	40	Male	White	20	Male	Yes
52	65	Male	White	28	Male
53	40	Female	Black or African American	19	Female
60	53	Female	Hispanic or Latino	22	Male
62	39	Female	White	19	Male

ID = intellectual disability. Includes all participants who had received a diagnosis of intellectual disability or mental retardation (historical).

Positionality

The researchers/authors understand that their lived experiences and academic backgrounds impacted the development and analyses of the present study. We also recognize the importance of disclosing the authors’ positionality, especially in qualitative research practice¹⁵ for reader transparency.

First author K.H. is a non-autistic autism researcher who holds a BS in Psychology. She is the twin sibling of an autistic adult. M.H. is a non-autistic autism researcher who holds a PhD in Clinical Psychology. She is the parent and primary caregiver of an autistic adult with high support needs. B.M.M. is a non-autistic autism researcher who holds a PhD in Clinical Psychology. A.d.M is a non-autistic autism researcher who holds a PhD in Clinical Psychology. Neither B.M.M nor A.d.M has any first-degree relatives on the autism spectrum.

Interview development and training

Members of the research team were required to do at least three practice interviews—first with another student, then with a faculty collaborator (B.M. or M.H.), and finally with the principal investigator (A.d.M) before interviewing a participant. With permission from the participant, interviewers in training also shadowed live participant interviews as part of the training process. Interviewers achieved independence once they could use the interview guide with fidelity while demonstrating rapport with participants.

Analysis

All interviews were fully transcribed and imported into Dedoose for qualitative analysis. Thematic analysis was conducted following the six phases described by Braun and Clarke.¹⁶ Initial codes were developed after review and discussion of five transcripts. All transcripts were then double coded by three non-autistic coders, who were trained undergraduate research assistants at the University of the Sciences. Kappa ranged from 0.76 to 0.87, suggesting moderate to strong agreement between coders.¹⁷ Next, the research team collaboratively identified themes using a subjective heuristic for determining significance. The theme identification process was done by looking at the codes and finding similarities across excerpts from multiple interviews. A significant theme needed to be: (1) expressed by multiple participants, (2) hold valence for the participants, and (3) be related to caregiving experiences during the pandemic. Finally, excerpts fitting identified themes were selected for inclusion in this article.

Results

Thematic analysis identified five main themes and associated subthemes, as presented below and in Tables 2 and 3. Participant quotations are presented, followed by participant ID numbers in parentheses.

Table 2.

Illustrative Quotations for Themes 1–3

Theme	Subtheme	Illustrative quotations
Theme 1: Strong connection between parent and child mental health	N/A	I’m sure I will always have a little spot in my heart where I’m gonna have to take care of her in my head. But during this pandemic it has been an increasing challenge because we were at a good point … And so for me she’s back in the forefront of my head again. And I’m back to feeling like I have to, I’m the kind of mom who feels like I have to solve all kinds of problems and I know I can’t. And so I’m back in that mode trying to make her life a little better for her, and then it takes a toll on myself… She’s back into my worry brain again, where she had been gone for a little bit of time (P25)
Theme 2: Increased vulnerability to COVID and isolated protocols	N/A	I worry about her getting it more though, because if she gets it, it is going to be horrible for her to go through that. And she does have some pre-existing conditions too. So we are more worried about her getting it than us. So I think we are being overly cautious because of that (P10). I think the biggest stressor is [CHILD’S NAME] actually going to work … and not knowing how he was behaving at work and if he was taking it seriously when he was at work because it was just at the very beginning of the pandemic, last March or April (P18).
Theme 3: Loss of resources	Loss of independence for adult child Loss of access to essential services for autistic adult child Loss of support	I think the disruptions that have really hurt, are things he was kind of enjoying even though he wouldn’t go and seeking it out. He was enjoying go out for work and having something to do, you know he had a rhythm for five days a week. He was out working 3 hours a day going back and forth, and so that was really the big thing (P18). [Finding out college was going online] was a crushing blow. He could not go to the gaming lounge or dining hall and especially he could not see other kids. He always says he wants to be one of the guys and he develops rapport with the other students. The online classes kept academic and took away some of the uncomfortable things but it took away many of the things that he really enjoyed (P60). For [child name], her whole world changed because we had about five different staff that rotated throughout the week. Some people were here in the afternoon time, and some people were here in the evening time. And during the pandemic, nobody came. One staff decided that she wanted to come a couple of weeks in… and she promised she was not going out or doing anything. So for [child name]’s sanity, we decided to let her come. So all the other staff didn’t come… So it has been tough for her because everything is different (P10).

Table 3.

Illustrative Quotations for Themes 4–5

Theme	Subtheme	Illustrative quotations
Theme 4: Expressions of emotional distress	N/A	Sometimes it’s not always aggression or self-injury. I think he’s had [episodes of] sobbing more (P6). They have a hard time initiating doing their laundry this summer, which last summer, was not a problem. They had a regular routine. So I think a lot of stuff feels more overwhelming for [child name] than it would normally (P1). Yeah, he is a little bit more aggressive and grumpy. Some behaviors are coming back that have been gone for a few years now because of his [in]ability to cope (P27).
Theme 5: Positive/neutral outcomes	Increased immediate and extended family bonding Ability to adjust to changes	Just that we have more, I think more quality family time at home (P8). We have been sheltering in this place because of his situation. He has severe sensory problems, so he has a hard time dealing with anything, like noisy, anything. We have been staying home and sheltering in place longer than anybody else so this is kind of like a piece of cake for us (P27).

Theme 1: Strong connection between parent and adult child mental health

The first theme captured the strong relationship between parent and child mental health: If she’s stressed, I’m stressed. If she’s good, then I’m good (P10).

Some participants described that returning to an active caregiving role resulted in them feeling an increased connection with their child’s well-being, thus suggesting that the parents well-being was directly contingent on their child at some capacity. Many parents are their autistic adult child’s biggest advocates and main caregivers; some participants expressed that this connection resulted in unique caregiver burden and stress: I mean I’ve always been there with [CHILD NAME] well, mostly since he’s been on this planet, but now is even more so… I worry about his mental well-being a lot. I cry about it on my way home. At night when I’m getting off from [work] and when I leave in the morning, I cry about it. It’s been, it’s been really stressful and hard… I don’t do much, I’m really mostly home with him (P46). Parents reported that living with their adult child, sometimes for the first time in years, led them to pay attention to areas of struggle: Being in close quarters so that I’m looking at everything [CHILD’S NAME] is doing and analyzing what is going on is such a big change for me. and I think because of [CHILD NAME]’s autism, learning disabilities and executive functioning problem I worry about their future (P01).

Parents further described the bidirectional effects of mental well-being in the family, sometimes placing the blame for the family’s emotional states squarely on their own shoulders: A bad day is my fault because I have a bit of a temper and become stressed over work. I share the stress with everyone else (P07).

Theme 2: Increased vulnerability

This theme explores the unique fear parents of autistic adult children experienced during COVID-19 due to their child’s disability status: There’s an element of fear… that people who don’t have a child with a disability might not experience (P8).

Participants highlighted how their unique experience caring for an autistic adult had isolated them from other friends and family who did not have to take extra precautions: I guess people, especially people in our age group who are friends with us, most of them are empty nesters, their children are independent, so I think, you know, again with COVID specifically I guess we have more concerns about trying to do the social distancing and being conservative about traveling and other things that maybe other families would not (P17).

Parents described a heightened fear of contracting COVID-19 due to living with a disabled adult, who may have an increased risk of experiencing complications—both physical and psychological—from the virus. In addition, some parents expressed a fear that their autistic child may not be able to advocate for themselves in medical settings in the instance that they did contract the virus. As one parent noted: I was worrying about things like, if she was hospitalized and had to go into the hospital, and they wouldn’t let me in with her… she can’t verbalize or communicate, I mean that was absolutely terrifying to me (P8).

Some parents expressed an increased fear of COVID due to their child’s limited understanding of the virus and associated safety protocols and were unsure that their autistic child was comprehending the new safety standards and adhering to expectations. It is important to note that while some parents expressed this fear, other parents described that their children had a comprehensive understanding of COVID-19 and were consistently adherent to rules and expectations surrounding personal hygiene and social distancing.

Theme 3: Loss of resources

This theme describes the resources participants felt were missing during the lockdown period that would help navigate these unique and challenging times. Parents mainly described their child’s loss of independence and personal and medical staff, and the pausing of academic and vocational programs, as negatively impacting the family unit’s quality of life.

Subtheme 3a: Loss of independence for autistic adults

Many of the autistic adult children described by their parents had been maintaining an independent lifestyle to some extent before the pandemic, doing things such as attending college, working, and living on their own. Following widespread lockdowns, however, loss of independence negatively affected many autistic adult children in the study: Before the lockdown, [CHILD NAME] was living in the residence hall with support from the staff there for doing stuff like registering for classes or lining up doctor’s appointments, generalized things. That’s back to being something where [SPOUSE NAME] and I are helping [CHILD NAME] with stuff which I think is a little bit uncomfortable for [CHILD NAME] to be back, going to mom and dad for help for stuff (P1).

Participants also described a loss of social interaction outside of the family as a negative change to their children’s lives and ability to maintain a sense of independence outside of the home: One of his few social interactions that have nothing to do with us as a family, he used to go to Pokémon league. That got canceled really early on and never picked back up and it isn’t going to until next year… that really bothered him (P41).

Subtheme 3b: Loss of access to essential services for autistic adult child

Most parents in the study expressed concerns about the changes in their ability to access services for their child and what consequences it may have: I am worried about the regression that she’ll take from her schooling and advancements (P8).

Many autistic adult children described in the study were involved in academic or vocational programs preceding the pandemic. Due to restrictions, however, these programs were either offered virtually or completely shut down over the course of the year, requiring the family and autistic adult to make significant adjustments: So [CHILD NAME] attends [a] private school for kids with autism, so it’s a very high staff to student ratio… so there’s an option for her to go in person but I’m just not comfortable with that at this point. So she’s been doing Zoom, which I would say probably the first 9 months took to set up in an effective way (P8).

Academic and vocational programming also intersects with social opportunities, making their loss especially weighted: Finding out [about his college campus shutting down] was a crushing blow [for CHILD]. Unlike a lot of kids with autism, he loves going to school… [virtual classes] took away a lot of what he loves about school. He could not go to the gaming lounge or dining hall, and especially he could not see other kids (P60).

For some families, services essential for transitioning from high school to adulthood were lost due to lockdown as well. Some participants described their children as transitioning to post-high school life, which can be an already uncertain and challenging time to adjust to regardless of the pandemic. As one parent described: It’s almost like his whole life has just been put on hold (P62).

Subtheme 3c: Loss of support

Many autistic adults benefit from a diverse support staff to support safety, activities of daily living, recreation, etc. Participants described losing access to their typical staff as the biggest stressor to them during lockdown: The biggest stressor is… is the loss of support. That’s the biggest one (P46).

Although many families reported the negative impacts of losing support staff due to the pandemic, even families who were able to keep their staff often expressed anxiety about regular outsiders in the home. This created a unique barrier on caregivers, many of whom had to take over multiple roles to support their child in place of the staff who would typically help the family: We still do therapies but a lot of that changed to Zoom meetings, which put a lot of pressure on us (P27).

Losing access to essential services and resources that help promote better lives for autistic adults had negative consequences on their well-being and lives: He also had an art therapist every week and it’s been one of the best things ever for him, but that therapist stopped coming during COVID (P12). Many parents expressed that their children were confused and/or upset by their support staff being inconsistent or lost: He started to worry for a while about [SUPPORT STAFF NAME], who’s his person who has been coming [in the earlier stages of the pandemic], but he started to worry that [ANOTHER SUPPORT STAFF NAME] wasn’t going to come back. He just wants to know (P06).

Theme 4: Expressions of emotional distress

This theme describes participants’ accounts of their adult children’s different emotional responses to the pandemic. Some parents described their children having positive or neutral reactions to the changes brought from the pandemic (see Theme 5); however, many also described challenging behaviors and emotional expression as a result of the pandemic: His behaviors have definitely started to get more negative and disruptive on a day to day basis for sure (P27). These distressing responses manifested in many unique ways, including expressions of negative affect (crying, aggression, disruptive behaviors), displays of self-harming behaviors, and increased rates of self-soothing behaviors indicative of emotional distress: He just hits his head a lot, he doesn’t sleep, he tries to make himself throw up (P6).

Negative responses to the pandemic included episodes of meltdowns, aggression, anxiety, depression and irritability: Yeah, she’s gone back to picking… She did that when she was younger, and so that was something that we thought we had got over, but it’s started back up again, so now we’re in the midst of figuring out how we want to address that… But we will literally put 25 band-aids on her feet, to cover up all the sores and put cream on them so she stops picking. So that’s a bad behavior that has started back up again (P25).

Parents also described new self-harm behaviors that their child had never previously engaged in. For example, one parent described: Before the pandemic, she never had major behaviors before, but during the pandemic that has happened now and is self-injurious. She was never self-injurious before the pandemic… She hits herself in her head with her hand. She hits her skin. She will jump up and down. She will scream. Cry. She will try to hit me or my husband. Slams the doors. That kind of stuff… Yeah, I mean I never thought she would be self-injurious, she had never done that ever before (P10).

Overall, parents observed a range of changes in their children’s behavioral patterns, such as increased use of self-soothing objects, activities, and rituals, suggesting increased feelings of emotional distress: His stim levels were high to me and at a level I have not seen him in since middle school (P7).

Theme 5: Positive/neutral outcomes

Although many of the impacts of COVID-19 described were negative, participants also shared both positive and neutral effects of the pandemic for their families.

Subtheme 5a: Increased immediate and extended family bonding

Participants described changes associated with the pandemic that improved their family connection: We eat together and that never used to happen (P7). Opportunities to spend more time together as a family were often cited as positive outcomes.

For some individuals with severe sensory aversions and demanding care needs, isolation is not new for them and their families. As the rest of the world began to experience the challenges associated with living with isolation, parents of autistic adults felt as though members of their extended families began to resonate with their situation and became more understanding, something that our participants described as a positive outcome of the pandemic: And my sister, she’s like, I’m so sorry, I did not know what this is like, and you guys were going through it from [CHILD NAME]’s situation. Especially it brought us closer, relationship wise, between my family members (P27).

Subtheme 5b: Ability to adjust to changes

Many parents also expressed neutral responses to the changes brought by COVID-19. Participants described that isolation was anything but abnormal for their families, who have been doing so for a while due to their autistic child’s needs, therefore resulting in little-to-no adjustment for these families. As one participant phrased it: We are used to it (P27).

While many people struggled to adjust to the changes in 2020, other families were comfortable and prepared to handle the restrictions and new expectations due to their family’s usual living situations: But even before the pandemic we are used to being stressed every day because you never know what is going to happen so we are used to the stress (P10). Not only were some families used to social isolation or experiencing heightened levels of stress, but some participants felt as though the restrictions were better for the success and comfort of their autistic child, expressing some positive aspects of the lockdown: He was really happy when school went to virtual. I do think he was disappointed with his classes getting canceled at college but the isolation I don’t think it has been very difficult for him… This is going to sound crazy but if I’m being honest, I’m going to say that [CHILD NAME] has been less stressed out now that there are fewer places for him to go. I mean it’s the opposite of what you would think but honestly think that’s the truth. It was very stressful for [CHILD NAME] during school (P20).

In sum, not all changes brought from the pandemic were described as negative for families, and many families were able to adjust comfortably during this period of widespread change, while others did not make any significant changes to their lifestyle.

Discussion

The current study aimed to characterize the experiences of parents caring for their autistic adult children in the first year of the COVID-19 pandemic in the United States. Using a qualitative approach to explore each parent’s lived experience, we focused on what was most important for their families during this time, and characterized, in detail, the impact of the pandemic and associated safety measures, on them and their families. Although many participants described challenges associated with this period, others described ways in which pandemic-driven changes had positively impacted their families, or ways in which their lives had surprisingly remained stable. These findings are consistent with a risk and resiliency framework for conceptualizing family systems and policies.¹⁸

Emotional challenges

As demonstrated previously,² several participants in our study described the pandemic as emotionally challenging for both them and their autistic adult child. Parents in this study described a range of distress-related behaviors in their adult children, including self-harm, increases in observable self-soothing behaviors, and withdrawal from the world outside the home. Many parents reported that their adult children struggled with the many changes to family routines, consistent with autistic adults’ self-report,³ while representing with a more heterogeneous sample of autistic adults. Although most parents did not explicitly describe the impacts their children’s distress behaviors had on them, a primary theme of the study was that parent and child mental health mutually influenced each other; thus, we speculate that increased distress in adult children resulted in increased distress in their parents.

Parents described that their return to an active caregiving role during lockdown resulted in them feeling an increased concern for and/or connection with their adult child. Not only were parents left with fewer resources to support their child and themselves, but stay-at-home guidance provided more time to observe their children’s distress and occasional regressions. Within the context of increased overall stress during this period, parents reported a strong bidirectional relationship between their adult child’s mental well-being and their own. Although research on parent–child relationships involving autistic adults is extremely limited, this finding is consistent with quantitative work on relationships between mothers and their autistic adolescents, which finds that characteristics of both the mother and adolescent child predict relationship quality, and that stronger relationship quality in turn results in lower caregiving strain.¹⁹ Parent mental health has a direct impact on their children’s²⁰; therefore, understanding ways in which we can support parents during challenging, high-stress times helps them to better support their children, as well, including when those children are adults.

Dramatic change to available resources

Aligning with previous research,¹¹ participants highlighted the different ways in which their ability to access essential resources for their autistic adult child dramatically decreased or changed and described the impacts these changes had on their families. Accessing autism services for adults can be extremely challenging in general,²¹ and the pandemic exacerbated barriers to accessing quality, affordable health services for many families, suggesting a need for improvements related to these family’s ability to access care in the face of crisis.

Several participants described the negative impact lockdowns had on their adult child’s ability to maintain independence in work, school, and socially. Not only did these changes reportedly impact participants’ adult children’s confidence and well-being, but also their ability to maintain connections outside the family unit. This impact of the pandemic is challenging because the inability to form and maintain social connections is harmful for autistic adults, who consider friendships to be essential to their well-being.²² Many parents in our study expressed feeling worried about their child’s ability to bounce back from this period of loss of independence in their social, academic, and work lives. Recognizing the changes to autistic individuals’ independence during the pandemic is important as we consider which resources may be most essential to support autistic individuals’ changed needs postpandemic, which parents and autistic individuals are likely still presently navigating.

For parents of adults with high support needs, losing access to resources was described as one of the most stressful consequences of the pandemic. As described above, this change was significant because, in general, accessing health services was already challenging for many families²³ and it may be challenging to reestablish these resources postpandemic. Furthermore, the pandemic disrupted established routines that had taken families significant time and effort to build in the first place. This poses a unique challenge to the autistic population because routine and sameness are especially crucial for maintaining lower anxiety²⁴ and thus well-being overall.

Parents reported higher levels of stress during this period due to the increased responsibilities they assumed, resulting in negative consequences to their physical and mental health. As described above, parents of autistic children are often heavily dependent on resources provided from schools, doctors, and other professionals and experience less stress when they have access to adequate resources and levels of support for their child.²⁵ Because of the pandemic, these support systems were dramatically diminished, exacerbating increases in stress for parents. Parent respondents increased their own caregiving responsibilities to support their children and fill these support roles, often at the cost of their own well-being, job performance, and ability to attend to other family members. In our own sample, parents described returning to the role of their child’s primary care provider due to service disruptions, including therapies, home aids, and school supports. Returning to this level of responsibility over their adult child, especially during the height of the pandemic, had negative impacts on parents’ stress, well-being, and ability to cope, thus impacting their ability to adequately address their own or their child’s needs.

Given what we learned about the strong connection between parent and child mental health, this increase in parent stress likely contributed to emotional distress in their adult child, creating a positive feedback loop within the family system.²⁶ It is important to note that while many parents described stepping up during this time to account for support losses, it is unreasonable to expect that parents would be able to keep up to the rigor and frequency of professional support staff that some of their adult children needed. Even when their parents gave everything they could, autistic adults who lost support during the pandemic still most likely suffered.

Caring for disabled adults during crisis

Some participants described feeling as though their child’s disability status created a unique pressure on them during lockdown. Literature in the past has highlighted different ways in which parents caring for a disabled child may experience unique barriers and challenges in their parenting that parents of nondisabled children do not, such as dealing with difficult policies surrounding their child’s medical diagnosis and accessing affordable health care.²⁷ In our sample, many parents feared what might happen if their child became ill and they were unable to advocate for them, or even be physically present with them while receiving medical care; and indeed, autistic adults experienced infection and hospitalization from COVID-19 at especially high rates.⁴ Parents’ concerns and experiences of burden express a need for additional research focused on parents to better understand ways we can support them, particularly in high-pressure situations where their child’s disability may create unique challenges. When parents are supported, their children are better supported, too.

Positive/neutral outcomes

Changes associated with the pandemic are often assumed to be negative, and indeed, many were. However, some parents in our sample also described ways in which their lives had either changed for the better or stayed the same. For example, increased time at home led some families to spend more quality time together, resulting in increased closeness and bonding. Some participants felt as though members of their extended families finally understood their living situations, in part, because the experience of social isolation—which had long been the reality of some families caring for adults with high support needs—was shared by so many. Although parents lost many support systems for themselves and their autistic child, this increased social connection with loved ones was essential for these families’ ability to cope with the pandemic. Some parents also found that staying home—and generally, having fewer places they needed to go—led to reduced stress and anxiety for both them and their adult child associated with being out in the community.

One intriguing finding was that some families expressed no significant changes to their family’s dynamic and routines, as isolating and staying at home were the norm for some families caring for autistic adults. This could be explained by a variety of different factors: some autistic people may prefer solitude,²⁸ others may be unwillingly socially isolated by their peers,²⁹ or in some cases, an autistic individual’s sensory needs may require them to be more homebound on a normal basis, as was described by some of the participants in our sample. In cases where autistic adults and their families are accustomed to isolation in their prepandemic realities, it may have been less challenging for these families to adjust to regulations at the beginning of the pandemic compared with the overwhelming majority of the population. This lack of change for these families during stay-at-home periods also sheds light on the preexisting isolation many families experienced before the pandemic began,³⁰ suggesting a general need within this population that future research should be interested in addressing.

Clinical and policy implications

The findings of this study underscore the need to prioritize and improve services for parents of autistic adults and their children, especially during crises. Beyond emergencies, our findings highlighted the stress and isolation that many families were under even before the pandemic, and the associated lack of resources available to autistic/disabled adults and their families. As they mature—even while still involved in the school system—autistic adolescents lose needed services and supports,³¹ making daily living more challenging for them and increasing caregiver burden on their parents. This suggests a need to develop and improve support for families, which not only benefits the parent but also the parent’s ability to appropriately support their child, and thus their child’s success.

Limitations and future directions

First, we acknowledge that none of the authors, interviewers, or coders for this study identifies as autistic themselves. Because non-autistic coders were responsible for creating the final, published themes, some of these conclusions may not be reflective of the autistic community and their true, lived experience. Despite no involved research personnel being autistic themselves, two authors (K.H. and M.H.) are family members (sibling and parent, respectively) of autistic adults, which is valuable to our discussion focused on parent and family member perspectives.

The authors acknowledge another limitation to this study that is they did not explicitly ask for parent participants to disclose whether they had a formal autism diagnosis themselves; therefore, these data are only available from the few parents who willingly and organically disclosed this information during the interview process, and we cannot make meaningful conclusions about the unique experiences autistic parents may have had while caring for their autistic adult child during the pandemic period. It is important to recognize and further investigate the unique experiences of autistic parents, which are not well represented in the literature.

The authors also acknowledge another limitation to this study that is parents were not asked to provide a formal documentation of their adult child’s autism diagnosis; rather, this information was only collected as a screener item in our Qualtrics survey. Because we did not collect documentation of the adult child’s autism diagnosis, we cannot be certain that all participants in the study were formally diagnosed by a health care provider, and some participants may not meet the clinical threshold for an autism diagnosis.

Because data were collected during the pandemic when many people were sheltering in place, there was variability in interview settings for both interviewers and participants, which may have impacted the amount of information disclosed by participants (e.g., if a participant was in close physical proximity to a family member). An additional limitation was the long time period during which the 20 interviews were conducted (July 2020–April 2021). As a result, participants described different, more extended pandemic time lines, as opposed to characterizing a narrower time period.

Finally, it is important to acknowledge that asking parents about their adult children’s experiences during the pandemic is not the same thing as talking to those adult children themselves; therefore, speaking directly to autistic adults and understanding their firsthand experiences and feelings are imperative. Our team is currently in the process of completing this work and a wealth of existing literature describing the experiences of autistic adults themselves has since been published.^1,32,33

The authors acknowledge and emphasize the importance of listening to autistic voices themselves, and also believe it is critical to extend research to parents of autistic adults for at least two reasons. First, some autistic adults cannot participate in interviews such as these, even with support, meaning that their voices will not be heard without a parent reporting on their behalf as best they can. One strength of the current study is that 40% of the autistic sample had a co-occurring intellectual disability, commensurate with the general autism population.³⁴ Second, caring for a disabled adult, especially given the minimal resources available to families in the United States, can be extremely stressful,³⁵ which demonstrates how parents themselves are a vulnerable population worthy of empirical attention.

Conclusion

In conclusion, the present study investigated the experiences of parents of autistic adults during the COVID-19 lockdown period, revealing the positive, negative, and neutral impacts of the pandemic on the autism community. Our findings point to many important areas for change and improvement regarding services and supports provided to both autistic adults themselves and their caregivers. It is essential to consider the experiences of caregivers of autistic adults during COVID-19 as we continue to navigate the postpandemic world to ensure this population’s needs are being properly addressed and supported both during crises and generally.

Footnotes

Acknowledgments

The researchers would like to thank the participants for their time, for sharing their experiences, and for contributing to their understanding of the autism community and parenting during the pandemic period. They would also like to acknowledge and thank the undergraduate research students who assisted the authors with data collection and analysis (Andrew Moticha, Marissa Tumasz, Dario Apadula, Allie Hushen, Thomas Grady, and Shalini Parekh). This work was supported by the University of the Sciences’ Summer Undergraduate Research Fund, and the Ruane Fund for Social Science Research, to author K.H.

Authorship Confirmation Statement

K.H.: Conceptualization, project administration, formal analysis, funding acquisition, and writing—original draft. M.H.: Conceptualization and writing—review and editing. B.M.: Conceptualization, methodology, and writing—review and editing. A.d.M.: Conceptualization, methodology, supervision, formal analysis, and writing—review and editing.

Author Disclosure Statement

The authors declare no conflicts of interest.

Funding Information

This work was supported by the University of the Sciences’ Summer Undergraduate Research Fund, and the Ruane Fund for Social Science Research, to author K.H.

Appendix 1

References

Oomen

, Nijhof

, Wiersema

. The psychological impact of the COVID-19 pandemic on adults with autism: A survey study across three countries. Mol Autism. 2021; 12(1):21; doi: 10.1186/s13229-021-00424-y

Bal

, Wilkinson

, White

, et al. Early pandemic experiences of autistic adults: Predictors of psychological distress. Autism Res. 2021; 14(6):1209–1219; doi: 10.1002/aur.2480

Bundy

, Mandy

, Crane

, et al. The impact of COVID-19 on the mental health of autistic adults in the UK: A mixed-methods study. Autism. 2021; doi: 10.31219/osf.io/9v5qh

Scheeren

, Crane

, Heyworth

, Pellicano

. Impact of the COVID-19 pandemic on autistic adults: A scoping review. Curr Dev Disord Rep. 2023; 10(1):92–122; doi: 10.1007/s40474-023-00268-6

Forbes

, Kent

, Charman

, Baird

, Pickles

, Simonoff

. How do autistic people fare in adult life and can we predict it from childhood? Autism Res. 2023; 16(2):458–473; doi: 10.1002/aur.2868

Office for National Statistics United Kingdom. UK young adults living with parents. Statistica. 2023. Available from: https://www.statista.com/statistics/285339/percentage-of-young-adults-living-with-parents-uk/ [Last accessed: July 9, 2024].

Dückert

, Bart

, Gewohn

, et al. Health-related quality of life in family caregivers of autistic adults. Front Psychiatry. 2023; 14:1290407; doi: 10.3389/fpsyt.2023.1290407

Warreman

, Lloyd

, Nooteboom

, et al. Psychological, behavioural, and physical aspects of caregiver strain in autism-caregivers: A cohort study. eClinicalMedicine. 2023; 64:102211; doi: 10.1016/j.eclinm.2023.102211

Lindly

, Shui

, Stotts

, Kuhlthau

. Caregiver strain among North American parents of children from the autism treatment network registry call-back study. Autism. 2022; 26(6):1460–1476; doi: 10.1177/13623613211052108

10.

Dillmann

, Sensoy

, Schwarzer

. Parental perceived stress and its consequences on early social-emotional child development during COVID-19 pandemic. J Early Child Res. 2022; 20(4):524–538; doi: 10.1177/1476718X221083423

11.

Alhuzimi

. Stress and emotional wellbeing of parents due to change in routine for children with Autism Spectrum Disorder (ASD) at home during COVID-19 pandemic in Saudi Arabia. Res Dev Disabil. 2021; 108:103822; doi: 10.1016/j.ridd.2020.103822

12.

Bölte

. The power of words: Is qualitative research as important as quantitative research in the study of autism? Autism. 2014; 18(2):67–68; doi: 10.1177/1362361313517367

13.

Tong

, Sainsbury

, Craig

. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007; 19(6):349–357; doi: 10.1093/intqhc/mzm042

14.

Palinkas

, Horwitz

, Green

, Wisdom

, Duan

, Hoagwood

. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Health. 2015; 42(5):533–544; doi: 10.1007/s10488-013-0528-y

15.

Braun

, Clarke

. Novel insights into patients’ life-worlds: The value of qualitative research. Lancet Psychiatry. 2019; 6(9):720–721; doi: 10.1016/S2215-0366(19)30296-2

16.

Braun

, Clarke

. Using thematic analysis in psychology. Qual Res Psychol. 2006; 3(2):77–101; doi: 10.1191/1478088706qp063oa

17.

McHugh

. Interrater reliability: The kappa statistic. Biochem Medica, 2012; 22(3):276–282. https://hrcak.srce.hr/89395 [July 9, 2024].

18.

Jenson

, Fraser

. Social Policy for Children and Families: A Risk and Resilience Perspective. SAGE Publications; 2015.

19.

Orsmond

, Seltzer

, Greenberg

, Krauss

. Mother–child relationship quality among adolescents and adults with autism. Am J Ment Retard. 2006; 111(2):121–137; doi: 10.1352/0895-8017(2006)111[121:MRQAAA]2.0.CO;2

20.

Bennett

, Brewer

, Rankin

. The association of child mental health conditions and parent mental health status among U.S. children, 2007. Matern Child Health J. 2012; 16(6):1266–1275; doi: 10.1007/s10995-011-0888-4

21.

Doherty

, Neilson

, O’Sullivan

, et al. Barriers to healthcare and self-reported adverse outcomes for autistic adults: A cross-sectional study. BMJ Open. 2022; 12(2):e056904; doi: 10.1136/bmjopen-2021-056904

22.

Lam

GYH

, Holden

, Fitzpatrick

, Raffaele Mendez

, Berkman

. “Different but connected”: Participatory action research using Photovoice to explore well-being in autistic young adults. Autism, 2020; 24(5):1246–1259; doi: 10.1177/1362361319898961

23.

Malik-Soni

, Shaker

, Luck

, et al. Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatr Res, 2022; 91(5):1028–1035; doi: 10.1038/s41390-021-01465-y

24.

Gotham

, Bishop

, Hus

, et al. Exploring the relationship between anxiety and insistence on sameness in autism spectrum disorders. Autism Res, 2013; 6(1):33–41; doi: 10.1002/aur.1263

25.

Krakovich

, McGrew

, Yu

, Ruble

. Stress in parents of children with autism spectrum disorder: An exploration of demands and resources. J Autism Dev Disord. 2016; 46(6):2042–2053; doi: 10.1007/s10803-016-2728-2

26.

Russell

, Hutchison

, Tambling

, Tomkunas

, Horton

. Initial challenges of caregiving during covid-19: caregiver burden, mental health, and the parent–child relationship. Child Psychiatry Hum Dev, 2020; 51(5):671–682; doi: 10.1007/s10578-020-01037-x

27.

Sukeri

, Bakar

, Othman

, Ibrahim

. Barriers to unmet needs among mothers of children with disabilities in Kelantan, Malaysia: A qualitative study. J Taibah Univ Med Sci, 2017; 12(5):424–429; doi: 10.1016/j.jtumed.2017.05.002

28.

Elmose

. Understanding loneliness and social relationships in autism: The reflections of autistic adults. Nord Psychol, 2020; 72(1):3–22; doi: 10.1080/19012276.2019.1625068

29.

Liptak

, Kennedy

, Dosa

. Social participation in a nationally representative sample of older youth and young adults with autism. J Dev Behav Pediatr, 2011; 32(4):277–283; doi: 10.1097/DBP.0b013e31820b49fc

30.

Kinnear

, Link

, Ballan

, Fischbach

. Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. J Autism Dev Disord. 2016; 46(3):942–953; doi: 10.1007/s10803-015-2637-9

31.

Laxman

, Taylor

, DaWalt

, Greenberg

, Mailick

. Loss in services precedes high school exit for teens with autism spectrum disorder: A longitudinal study. Autism Res. 2019; 12(6):911–921; doi: 10.1002/aur.2113

32.

Maljaars

, Gijbels

, Evers

, et al. Impact of the COVID-19 pandemic on daily life: Diverse experiences for autistic adults. J Autism Dev Disord. 2023; 53(1):319–331; doi: 10.1007/s10803-022-05437-x

33.

Riese

, Mukherjee

RAS

. The experiences of autistic adults during the COVID-19 pandemic in the UK and implications for autism services development. AIA. 2021; 8(4):343–353; doi: 10.1108/AIA-06-2021-0026

34.

Maenner

, Warren

, Williams

, et al. Prevalence and characteristics of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2020. MMWR Surveill Summ. 2023; 72(2):1–14; doi: 10.15585/mmwr.ss7202a1

35.

Barker

, Mailick

, Leann

. Chronic parenting stress in mothers of adolescents and adults with autism: Vulnerability and resilience. Compr Guide Autism. 2014:207–222; doi: 10.1007/978-1-4614-4788-7_9