Abstract
Occupational therapy practitioners can support autistic people across the lifespan in areas such as daily living, leisure, and executive function strategies, as well as support their caregivers as they manage the present and plan for the future.
Given the increase in the prevalence of the diagnosis of autism spectrum disorder (ASD), the number of autistic adults is rising. In the United States, it is estimated that autistic adults comprise just over 2% of the population (Dietz et al., 2020). Autistic adults frequently require support to participate in occupations. Support for employment, independent living, and community participation may come from formal services; however, because services for adults are limited and difficult to access (Dudley et al., 2019; Marsack-Topolewski & Weisz, 2020), autistic adults often rely on support from unpaid caregivers, most frequently, parents. For the purpose of this study, we define a caregiver as a parent or guardian who provides physical, emotional, or financial support to an adult regardless of whether that adult lives with the parent or guardian. Until recently, the literature on autism caregiving has focused primarily on the experiences of parents of autistic children (e.g., Huang et al., 2014). However, in the past decade, given the recognition that caregiving is often a lifelong role, more studies have focused on the experience of caregivers of autistic adults. These studies have focused primarily on burden and quality of life. Caregivers have been found to experience time-related, emotional, and financial burdens that affect their quality of life (Marsack- Topolewski & Weisz, 2020). Not only does caregiving place demands on caregivers’ time, but caregivers may also feel out of sync with traditional roles and the activities of their peers, experience high levels of stress and worry, and face financial stressors (Marsack-Topolewski & Weisz, 2020). Aging caregivers may experience an increased burden as they manage their own and other family members’ health needs (Hines et al., 2014, Marsack-Topolewski, 2020; Marsack-Topolewski & Church, 2019). In addition, they may experience social exclusion as a result of the stigma associated with ASD and the time commitment involved in caring for autistic adults (Marsack & Perry, 2018). However, along with these burdens, caregivers also report joys and rewards associated with this role, including increased self-efficacy, enhanced faith, and increased appreciation of life (Waizbard-Bartov et al., 2019).
Caregiving is a multifaceted endeavor that shifts across the lifespan (Newsom et al., 2012). It involves trust and intimacy and both visible and “invisible” work (Grant, 2007). Caregiving is embedded in family routines and traditions and is guided by family expectations and beliefs as well as by societal norms and values (Grant, 2007). For caregivers of autistic adults, the future is a major concern (Herrema et al., 2017; Marsack-Topolewski & Graves, 2019). As they themselves age, caregivers become increasingly aware that a time will come when they will no longer be able to provide care, yet many caregivers do not have plans in place and defer making decisions (Marsack- Topolewski & Graves, 2019).
Because most caregiving takes place in the home, few people outside the household may understand what it actually entails. Making visible the support parental caregivers provide, including the roles and occupations involved, is important so that services can be established to support both caregivers and autistic adults through the lifespan. Roles are a key performance component and are critical in occupational therapy because they are associated with specific occupations, can support or inhibit participation in occupations, and are key to one’s identity (American Occupational Therapy Association, 2020). Therefore, it is important that occupational therapy practitioners recognize the complexity of caregiving. In addition, understanding what caregiving for autistic adults entails is especially salient given the recent calls for occupational therapy professionals to address the needs of both autistic children and adults (Kornblau & Robertson, 2021 ; Watling et al., 2005) and their families. Therefore, the purpose of this study was to address the following question: What roles do caregivers enact to support autistic adults?
Method
Procedure
To explore the roles of caregivers of autistic adults, we used a descriptive qualitative design described by Sandelowski (2000). Descriptive qualitative research focuses on summarizing experiences and events as described by individuals. In line with this approach, we did not start with a particular theoretical or philosophical stance (Lambert & Lambert, 2012). We stayed close to the data in our interpretation process to best reflect the caregivers’ experience.
This study drew on data from Phase 2 of an outcome study of autism in middle adulthood. Approval for this study was obtained from the University of North Carolina at Chapel Hill institutional review board. For Phase 1 of the outcome study, participants were recruited from a clinical database of more than 3,000 people who had been diagnosed with autism as children at the University of North Carolina TEACCH® Autism Program between 1969 and 2000 (see Dudley et al. [2019] for details of sampling and ascertainment procedures). Caregivers of 274 autistic adults completed an online survey in the Phase 1 of this study. In Phase 2, a subset of autistic adults who were living in North Carolina and were able to be assessed in English were invited for in-person testing. Caregivers of this subset of autistic adults were asked to participate in Phase 2. After providing informed consent, caregivers completed questionnaires and participated in in a two-part interview. The interviews, which were audio recorded, took place in a private room at the TEACCH center. First, we administered the Vineland Adaptive Behavior Scales (2nd ed., VABS–2; Sparrow et al., 2005) Parent/Caregiver Interview, a psychometrically sound, norm-referenced assessment tool that provides information about communication, daily living skills, and social skills. During the VABS–2 interview caregivers shared narratives about the autistic adult’s adaptive behavior. For this study, scores were used only to provide descriptive information about the autistic adults’ skills. Next, we conducted semistructured interviews that lasted approximately 30 to 45 min. An interview guide with open-ended questions focused on caregiving (e.g., “What does caregiving involve for you?”), future plans (e.g., “What are your hopes for the future for [name]?”, “What are your biggest concerns about the future?”) and services and supports (e.g., “Tell me about the services [name] currently receives,” “What services do you think [name] would benefit from?”). Interviews were conducted by Nancy Bagatell and Elena Lamarche. Bagatell, who has extensive experience conducting qualitative research and many years of clinical and research experience with autistic adults, conducted the majority of the interviews. Lamarche, who was the research coordinator for the study, received training in qualitative interviewing before the start of the study.
Data Analysis
Data analysis was an iterative process that began with Bagatell writing reflexive memos after each interview. The memos included notes about participants’ nonverbal responses, general impressions about the interview, and impactful quotes. It was in these memos that the themes of caregiving roles first emerged. After each interview was transcribed, Bagatell, together with graduate students trained in qualitative analysis, read through the transcript and identified narratives. The narratives were extracted and examined for both structure and content. We asked ourselves, “What is the story here? What is the caregiver saying?” Bagatell and the graduate students then discussed each narrative. It became clear that a major theme was the complex work of caregiving. We were struck by the multiple roles these caregivers described and enacted on a regular basis.
Our next step was to code each narrative, labeling data segments with a description of the caregiving role using words to capture the essence of the statement (Saldaña, 2016). Bagatell and one student then coded each narrative. Codes were discussed, revised, refined, and eventually defined in a codebook.
Once the codebook was established, each narrative was recoded by one member of the analysis team. Any segment that did not fit a code was discussed, and decisions were made regarding whether and how to code that segment. The codes were then clustered into themes with subthemes. Illustrative quotes were chosen to illustrate the themes. The themes, subthemes, and quotes were shared and discussed with Lamarche, Klinger, and the larger research team. Minor changes to subtheme names were made on the basis of feedback from the team. To enhance the trustworthiness of the study, the following strategies were used: researcher triangulation; peer debriefing; reflexive memos; and a clearly documented research process, including an audit trail of code and theme generation.
Participants
Caregivers (N = 31) of autistic adults completed the interviews. All participants except for one were parents. Six caregiving couples completed the interviews together; 8 fathers, 16 mothers, and 1 aunt completed the interviews individually. The participants were from diverse backgrounds; 24% identified as Black, 4% as mixed race, and 72% as White. Thirty-five percent had an income >$85,000, and 19% had an income <$25,000. The majority were college educated (55% of fathers, 77% of mothers).
The autistic adults being cared for were largely male (74%), with a mean age of 38 yr (range = 27–53). Most (65%) were living with the caregiver, whereas 8% lived independently and 27% lived in residential settings. Thirty-five percent were employed. Scores on the VABS–2 ranged from 20 to 86, with a mean of 45; five had scores >70. The demographic characteristics associated with the autistic adults were consistent with what is known about autism (e.g., 3–4:1 male) and with the larger survey study (e.g., 10% lived independently).
Findings
Three themes, each with three subthemes, reflecting the main caregiving roles were identified: (1) Theme 1, managing daily living needs; (2) Theme 2, obtaining services and supports; and (3) Theme 3, providing invisible supports. Exemplar quotes are provided to represent subthemes and pseudonyms are used to maintain confidentiality. The roles described were enacted by caregivers regardless of the autistic adult’s age, residential status, gender, race, or VABS–2 score.
Theme 1: Managing Daily Living Needs
This theme represents the more traditional caregiving roles related to daily living.
Basic Activities of Daily Living Assistant
Caregivers assisted autistic adults in a range of basic activities of daily living (BADLs), including bathing, toileting, dressing, and grooming. For some, this required direct assistance. One father described how he supports his son as he prepares for work in the morning: “He’ll put his shoes on and come out and have me tie them up.” Although assisting with BADLs occurred more frequently when the autistic adult lived with their caregiver, many caregivers provided assistance to those who lived independently or in residential settings, albeit less frequently. Often, this entailed providing reminders to complete BADLs to adhere to grooming and hygiene norms. One father described how, although his son lived alone and worked part time, he continued to assist him: George has a beard. He doesn’t seem to know when it’s unruly, and we’ll have to regularly remind him: “George, you know, you’re going out tomorrow night . . . Get your beard trimmed.” And you know, sometimes I’ve done it; I have a beard trimmer, I’ll do it at home when he is over. Same thing with his hair. He won’t know when he needs a haircut, unless you direct him.
Instrumental Activities of Daily Living Assistant
Caregivers assisted autistic adults in a range of instrumental activities of daily living (IADLs), such as money management, meal preparation, laundry, cleaning, and shopping. One father described how his wife shops for clothes for their son, who lives independently: “Mother buys all of his clothes for him, and we’ve got to make sure it’s wrinkle-free pants and shirts because of his work.” Another mother noted how her daughter, who lives across the street, remains dependent on her for cleaning: Karen will make an effort for a short period of time, to clean dishes off of the coffee table where she eats and take them to the kitchen. But that only lasts a very short period of time. It’s seemingly impossible for her to complete tasks like this. So, I end up doing it.
Activity Planner
Caregivers planned activities for autistic adults, including arranging opportunities for social and recreational activities. The caregivers placed great value on being active and “doing with others.” One mother described how she facilitates social activities for her adult daughter, who lived in supervised housing: “I make sure she’s involved in activities like with the Parks & Rec and the church group. I don’t want her sitting around.” Another mother, whose son lived with her, described how she is concerned about her son’s weight gain and overall health. She noted, “I make sure that he’s healthy, you know, I do focus on making sure he gets exercise every day.”
Theme 2: Obtaining Services and Supports
This theme focused on how caregivers helped autistic adults obtain needed services and supports.
Advocator
An advocator is one who takes on the role of advocating for services for the autistic adult. Caregivers noted that, given the limited availability of services for autistic adults, they had to be persistent and, at times, demanding. Caregivers noted that advocating for services required them at times to downplay the strengths of the autistic adult and emphasize deficits to convince others that services were needed. One mother reported: “They [support agency staff] were saying he doesn’t need help anymore, that he’s fine with his home stuff, and I’m saying, ‘But here’s a list of needs that he has.’. . . He needs services.”
Navigator
Caregivers discussed the maze of service systems they had to navigate, describing how they often were shunted from one office to another, in particular when trying to obtain mental health services. One mother stated, It’s really a job just to keep services and keep up with things that you ought to know. It was especially hard when we realized that we need better mental health services. There’s so many different pieces of it, and none of them make sense to me, because I’ve not been part of it. It’s a puzzle to me!
One father described his frustration as he tried to navigate financial systems: “I spend hours trying to figure out Social Security and what he can earn and can’t. It’s really complicated. Honestly, my head is exploding.”
Future Planner
Caregivers had to shift their horizons from their current efforts of advocating and navigating systems to obtain services in the present to planning for the future. All of the caregivers were concerned about the future and said they were trying to plan for the eventuality of when they would no longer be able to care for the autistic adult. This included planning for guardianship, financial stability, and housing. One couple described their efforts to ensure stable housing for their autistic son, who was currently renting an apartment using a monthly stipend from them, along with the money he earns at his part-time job: “We’re in the process of trying to buy him a condo, because we’re starting to think of something that’s sustainable after we’re gone.” One mother described how they were “back to square one” with planning because her brother, who had agreed to care for her son if needed, recently became ill and was no longer able to take on this responsibility. She stated, “I don’t want to burden my daughter, but I need to have this conversation with her.” Looming large for the caregivers was the question “Who will take care of my child?” As one mother noted, “I go to bed at night with that on my mind, and I wake up in the morning with that on my mind. Our son has to be taken care of when we are not able to do it.”
Theme 3: Providing Invisible Supports
The third theme, providing invisible supports, highlights caregivers’ behind-the-scenes work and also has three subthemes.
Culture Broker
According to anthropological theory (Van Willigen, 1986), a culture broker is one who acts as a bridge or helps others to cross borders between different cultures. Caregivers often provided interpretations or translations in social situations. One mother described how she helps her adult son understand the neurotypical culture and to make sense of what people say or do: “I help him with processing the world. It’s like being a foreigner in many ways. I kind of help him understand why things happen, why people say things, what they mean; you know?” Another mother noted how she recently had taken on the role of culture broker during a medical appointment, helping her son explain his pain and ensuring that the doctor did not misinterpret or dismiss her son’s behavior: I had to explain to the doctor that John doesn’t complain about pain—ever. For him to act like that, it had to be bad. Then I had to explain to John that the doctor had to touch his stomach in a way he would understand. I was kind of being the interpreter.
Coach–Educator
Caregivers often provided scaffolds, reminders, and encouragement to their autistic adult. Some parents described how they provide visual reminders and program calendars and make visual prompts to support independence. Other parents explained how they had taught their adult child rules for various activities. For example, one father described teaching his son to drive: I was like a coach or a teacher. I was very clear about the routine of putting on your seatbelt, checking the mirrors, etc. But also about being safe when you’re out. Like when you drive anywhere, you keep your doors locked. And he follows this religiously.
Caregivers often provided encouragement, acting, as one parent noted, “like a cheerleader.” They also provided coaching through difficult moments. One mother noted: When she gets into a rut or she’s getting really agitated, we say, “Write down what is the false message that [obsessive–compulsive disorder] is giving you and what is the truth and what is the big picture.” And this seems to help her.
Lifeline
The caregivers took on the role of lifeline: someone who provides a means of escape or support in a difficult situation. Often, they enacted this role when the unexpected occurred or when there was perceived or real danger. One caregiver described a situation when their son, who was always a careful driver, was stopped by the police: “When the police gave him a ticket, he called us to help him. He was panicking.” Another parent said her son, who lives an hour away, called her one night when he was sick and vomiting. She said, “He called and said, ‘Mommy, help me, help me,’ and I realized he didn’t have anyone else to call. So, I drove over even though it was late. He really needed me.”
Discussion
Our findings highlight the numerous roles that caregivers enacted to facilitate autistic adults’ participation in various occupations. Some roles were long standing, and others evolved as the caregiving dyads experienced changes. All roles were enacted by caregivers regardless of the autistic adult’s age, residential status, gender, or race. As other research has identified (e.g., Newsom et al., 2012), caregiving for these parents of autistic adults was complex and dynamic.
Caregiving roles included observable work, such as assisting BADLs. More frequently, caregivers assisted with IADLs. This included physical assistance as well as providing reminders to complete the activities to meet family and/or societal expectations. This finding was not entirely surprising given the daily living needs of autistic adults and the plateau or decline of daily living skills in adulthood reported in the literature (Clarke et al., 2021; Meyer et al., 2018; Smith et al., 2012). It is important to note that caregivers continued to provide significant BADL support even to those who were living on their own. Although we did not specifically ask about burden, it is important to note that research has shown that dependence in BADLs is a notable contributor to parental perceptions of caregiver burden (Marsack-Topolowski et al., 2021).
Caregivers also took on the role of activity planner, ensuring that the autistic adult engaged in exercise and other recreational activities in the community rather than spending time alone at home. Planning activities may be especially challenging for some autistic adults because of executive function challenges identified in real-world settings (Wallace et al., 2016). Taking on the role of activity planner is consistent with previous studies that have identified the critical role parents play in promoting physical and recreational activities and keeping autistic adults occupied (Orsmond et al., 2004). This is a critical role because physical activity and participation in recreation have been shown to decrease stress and may lead to improved quality of life for autistic adults (Bishop-Fitzpatrick et al., 2017).
Caregivers spent a considerable amount of energy enacting roles related to obtaining services and supports. They had to educate themselves, navigate multiple systems, and continually advocate for services. For most caregivers this role was not new because they had navigated health and educational services for many years. However, locating services for their autistic adults highlighted the “service cliff” as well as the lack of coordination among service delivery systems (Marsack & Perry, 2018). In addition, caregivers had to figure out how to represent their autistic adult because if they were deemed too “able” they would not be eligible for services. Navigating legal, housing, and financial systems and obtaining services became more critical as the future loomed large and caregivers wondered who would provide care when they were no longer able.
Finally, caregiving included the less visible roles of coach, culture broker, and lifeline. These roles reflect some of the unique characteristics of autism, specifically, the social, cognitive, and emotional differences that manifest in interactions with the neurotypical world. Caregivers provided structure, rules, and emotional support to enable their autistic adult to make sense of the hidden curriculum: the skills typically not taught directly that affect social functioning (Myles et al., 2004). They helped make explicit the unstated rules and customs and provided emotional support and assistance when the unexpected occurred.
Although some providers may address the BADLs, IADLs, and social needs of autistic adults, the coach, culture broker, and lifeline roles are the types of support that are not provided by typical adult services. These supports are important for all autistic adults, even those who do not have an intellectual disability and therefore are eligible for more intensive services in most states.
Limitations
This study included caregivers who lived in one state and were raising their autistic children at a particular period of time; thus, their experiences may not represent the caregiving experiences of parents in other geographic areas. In addition, the study was not designed specifically to address caregiving roles; therefore, additional studies are warranted. Although the analysis process did not include member checking, other strategies to enhance the rigor of the study, such as reflexive memos, multiple coders, and peer review, were used.
Implications for Occupational Therapy Practice
On the basis of these findings, occupational therapy practitioners should do the following: ▪ Evaluate and address BADL and IADL performance, taking into account executive function and leisure/recreation opportunities, with autistic people across the lifespan to decrease the level of support needed in adulthood. ▪ Assess roles and support caregivers as they consider the future. ▪ Collaborate with other service providers to address self-advocacy and the “hidden curriculum” with autistic people and caregivers across the lifespan. Understand service systems and policies and work with other professionals to support autistic people and their caregivers to locate and navigate systems.
Conclusion
This study reveals the multiple and complex roles enacted by caregivers of autistic adults regardless of their life situation. These roles include visible actions, such as managing daily living needs and obtaining services and supports, as well as less visible actions, such as being a coach, a culture broker, and a lifeline. Occupational therapy practitioners should focus interventions on daily living, recreation, self-advocacy, and the “hidden curriculum” to decrease reliance on caregivers. Occupational therapy practitioners can partner with other professionals to support caregivers as they age and manage both the present and future needs of their autistic adult as well as their own health and well-being.
Footnotes
Acknowledgments
We thank all of the participants who participated in this study for sharing their stories. We also thank the occupational therapy students at University of North Carolina at Chapel Hill who participated in the data analysis process.