Relationship Between Symptom Severity and Caregiver Burden Experienced by Parents of Adults With Autism

Abstract

This study examined the relationship between the severity of autism spectrum disorder (ASD) and caregiver burden among parents of adult children with ASD. Using a mixed-methods study, 320 parents of adults with ASD participated in the web-based survey, with 51 parents participating in follow-up interviews. The quantitative analysis was used to determine whether caregiver burden could be predicted from the severity of ASD factors (communication, behavior, and socialization) and basic and instrumental activities of daily living (BADLs and IADLs). Results indicated that caregiver burden was predicted from BADLs, IADLs, and adult child behavior. Interview themes that emerged from qualitative analyses supported quantitative findings. Behavior was the strongest predictor of caregiver burden and discussed by parents during interviews. Professionals should develop behavioral support programs for adults with ASD to continue to reinforce positive behavior and support parents who are managing their adult child’s difficult behaviors.

Keywords

caregiver burden severity aging caregivers adults with autism spectrum disorder activities of daily living

The rate of individuals diagnosed with autism spectrum disorder (ASD) has increased by 269% over the last two decades (Van Naarden Braun et al., 2015). A Centers for Disease Control and Prevention (CDC, 2019) report estimated one in 59 children in 2014 was diagnosed with ASD. Worldwide, the prevalence of ASD is a global concern, with Nightingale (2012) indicating that approximately 5.3 million adults and 1.3 million children and adolescents live with ASD.

Children and adults diagnosed with ASD experience a range of impairments, particularly behavior and developmental challenges, as well as social and communication deficits (Kanne & Mazurek, 2011; Leung et al., 2018). These challenges and deficits continue into adulthood, making it difficult for them to function independently in society. Parents of individuals with ASD typically are responsible for attending to their children’s needs across their life span.

Many individuals with ASD may require physical, emotional, and financial support from their parents throughout adulthood (Marsack & Perry, 2018; Matson & Rivet, 2008). The demands of caregiving often change as children transition into adolescence and then adulthood. During these transitions, caregivers also are aging and may face their own health-related challenges, adding to caregiver burden. The level of care and the degree of independence of the adult with ASD affect the day-to-day roles and responsibilities assumed by the caregiver. Five components affect the day-to-day roles, including caregiver burden, severity of ASD (communication, behavior, socialization), and activities of daily living (ADLs).

Caregiver Burden

Caregiver burden is the combination of responsibilities, stressors, and challenges that parents experience from providing care to their adult children with ASD (Lazarus & Folkman, 1984). Novak and Guest (1989) described four types of burden (time dependence, financial, developmental, and emotional) that contribute to caregiving-related stressors. Parents reported that meeting the needs of their adult children with ASD is time-consuming, as well as physically and emotionally exhausting (Swaab et al., 2017). Because their adult child with ASD might never leave home, many parents recognized that their developmental milestones differed from their peers who were experiencing empty nest syndrome or having grandchildren (Marsack & Perry, 2018). Many parents reported negative emotions (e.g., sadness, grief, mild depression, guilt, blame, and anxiety) as a result of ongoing, continuous caregiving (Corcoran et al., 2015; Marsack & Perry, 2018). Having an adult child with ASD can affect the family’s financial status due to restrictions on working and the need to obtain services for their child (Saunders et al., 2015).

Severity of ASD

Deficits in communication, behavior, socialization, and ability to perform ADLs often are associated with ASD. These characteristics can be unique or in multiple combinations that contribute to the severity of ASD.

Communication

A defining characteristic of ASD includes challenges in communication (Koegel et al., 2016). Communication challenges may manifest in problems with social-emotional reciprocity, awkward social approach, maintaining conversations, and initiating or responding to social interactions (Koegel et al., 2016). These symptoms, often evident in young children, can decline across the life span (Locke et al., 2013). The inability to communicate may interfere with social conversation and the development of social relationships for individuals with ASD. These difficulties with communication resulted in mixed findings regarding changes in aggressive behavior (De Giacomo et al., 2016; Kanne & Mazurek, 2011) and problems with functioning in society.

Behavior

Individuals with ASD often experience challenges associated with atypical behavioral manifestations. These challenges often are evident from early childhood and continue into adolescence and adulthood, sometimes with potential improvements in symptomology (Magiati et al., 2014). Challenging behaviors are defined as behaviors that “interfere with everyday activities, and include self-injurious behavior, withdrawal, uncooperative behavior, aggression, and destruction of property” (Shattuck et al., 2007, p. 1736). Issues with inappropriate behavior affect individuals with ASD, parents/caregivers, and the community at large. A study by Kanne and Mazurek (2011) found that 68% of individuals with ASD exhibited some form of aggression toward their caregivers. In another study, individuals with ASD exhibited a greater frequency in aggressive and destructive behaviors when compared to individuals with intellectual disabilities (Matson & Rivet, 2008). Behavioral challenges may be exacerbated by difficulties related to communication and social impairments.

Socialization

Individuals with ASD struggle to engage in typical social interactions across multiple contexts, such as social relationships, school, and employment (Howlin et al., 2004). Adults with ASD often have problems in developing and maintaining social interactions, including friendships and intimate relationships (Bonete et al., 2015). They face challenges in securing and sustaining employment due to difficulty with problem-solving skills, inability to cope effectively, and challenges relating and navigating the social world (Parr & Hunter, 2014). Although researchers have found modest, positive changes in socialization from childhood to adolescence, the ability to socialize continues to be problematic throughout adulthood (Baghdadli et al., 2012).

ADLs

The tasks people do during the day for self-care (e.g., feeding, bathing, dressing, grooming, work, and homemaking) are ADLs. ADLs typically are separated into two groups, basic (BADLs) and instrumental (IADLs). BADLs include personal tasks associated with self-care (e.g., ability to eat, get dressed, bathe, and toilet). IADLs involve the ability of an individual to interact effectively with their environment and others (e.g., preparing meals, managing money, taking medication, shopping for groceries, and making telephone calls; American Occupational Therapy Association, 2014). The extent to which an individual with ASD can perform BADLs and IADLs is indicative of the level of caregiver support needed. Poor performance of BADLs and IADLs is strongly related to the need for residential treatment (King et al., 2017). Furthermore, very aggressive behaviors that demand supervision and constant redirection require greater dependence on family members to complete BADLs (Kats et al., 2013).

A study of 50 mothers of individuals with ASD investigated the association between the ability of the individual with ASD to complete BADLs and IADLs and caregiver burden (Lin, 2011). The results of the study indicated a strong negative relationship between functional ability (BADLs and IADLs) and caregiver burden (r = −.57, p < .001). Lin (2011) concluded that caregivers who provided help to their care receiver with ADLs were more likely to experience higher levels of caregiver burden. Consistent with previous research, Reed et al. (2016) noted that the ability to perform BADLs had a greater impact on caregiver burden than the ability of the adult with ASD to perform IADLs.

Purpose of the Study

Research on the association between caregiver burden and BADLs and IADLs focused on caregivers of young children and adolescents with ASD or on individuals with other types of disabilities (i.e., dementia). Existing studies have not examined the impact of functional abilities, communication, behavior, and socialization of adults with ASD on caregiver burden experienced by their parents. This study is novel in its approach to filling this gap in the research. The purpose of this study was to examine the influence of BADLs and IADLs, along with the severity of ASD on the extent of caregiver burden reported by parents of adult children with ASD.

The research questions addressed in this study are the following:

Research Question 1 (RQ1): Can adult child’s performance of BADLs and IADLs along with parent report of the severity of their child’s ASD explain the level of caregiver burden for aging parents?

Research Question 2 (RQ2): How do parent comments regarding the effects of BADL, parent reports of severity of ASD, and caregiver burden align with the results of the regression analysis?

Method

Participants

The caregivers in this study were parents who met the inclusion criteria of having an adult child 18 years of age or older who was diagnosed with ASD, being at least 50 years old, and having access to a computer to complete the web-based survey. The decision to limit the sample to parents who were at least 50 years of age was to collect data from caregivers whose children had reached adulthood to fill the gap in literature related to caregivers of adults with ASD. Previous research generally focused on parents with young children or adolescents with this condition. The web-based survey was attempted (completely or partially) by a total of 353 participants, with 33 participants eliminated from the final sample due to insufficient responses (23 participants) and ineligibility based on inclusion criteria (10 participants). The final sample consisted of 320 participants. For the purpose of this study, parents and caregivers are used interchangeably.

The ages of the parents who completed the survey ranged from 50 to more than 70 years of age. Most participants were female (n = 259, 82.0%), White (n = 289, 90.0%), and had completed undergraduate and graduate degrees (i.e., bachelor’s degrees: n = 100, 31.3%; master’s degrees: n = 90, 28.1%; and doctorate/professional degrees: n = 33, 10.3%). The majority of parents were married (n = 252, 79.2%), with annual self-reported family incomes varying from less than US$20,000 to more than US$100,000. A total of 103 (32.9%) parents reported annual family income levels that exceeded US$100,000 (see Table 1).

Table 1.

Frequency Distributions: Parents’ Demographics(N = 320).

Parents’ demographics	n	%
Parents’ age
50 to 59	212	66.3
60 to 69	95	29.7
70 and above	13	4.1
Gender of parent completing survey
Male	57	18.0
Female	259	82.0
Missing 4
Ethnicity
African American/Black	5	1.6
American Indian/Alaskan Native	1	0.3
Caucasian/White	289	90.9
Hispanic	12	3.8
Multiethnic	6	1.9
Other	5	1.5
Missing 2
Marital status
Single, never married	6	1.9
Married	252	79.2
Divorced	41	12.9
Widowed	11	3.5
Co-habiting	2	0.6
Separated	6	1.9
Missing 2
Educational level of respondent
Less than high school	1	0.3
High school/GED	10	3.1
Some college	42	13.1
Associates degree/technical school	44	13.8
Bachelor’s degree	100	31.3
Master’s degree	90	28.1
Doctorate/professional degree	33	10.3
Annual family income
Less than US$20,000	14	4.5
US$20,001 to US$40,000	24	7.7
US$40,001 to US$60,000	42	13.4
US$60,001 to US$80,000	45	14.4
US$80,001 to US$100,000	37	11.8
More than US$100,000	103	32.9
I would prefer not to respond	48	15.3
Missing 7

Note. GED = general educational development.

Recruitment Procedures

Surveys were administered through Qualtrics software. Organizations and support groups that were likely to interact with aging parents and caregivers of adults diagnosed with ASD were contacted to assist with the recruitment process. These organizations agreed to disseminate study information and the survey link to their constituents in various formats that included website, flyers, newsletters, and word of mouth. Participants also were recruited via snowball sampling and face-to-face-efforts.

Surveys and Interviews

This study used previously collected data from a larger parent study (Marsack, 2016). The survey consisted of seven parts that measured parent demographics, data about adult child with ASD, parent report of severity of ASD, ability to perform BADLs, informal and formal social support, and caregiver burden. For the present study, parent demographics, parent report of severity of ASD, ability to perform BADLs, and caregiver burden were examined.

Demographic survey

A researcher-developed demographic survey collected data on personal and family variables. The survey items included age, gender, ethnicity, marital status, parents’ educational level, and annual family income. For most items, a “forced-choice” method was used to obtain consistent responses across participants. Some items used a text box that allowed participants to provide additional information.

Severity of ASD

Parents rated their adult children’s abilities in three areas, communication, behavior, and socialization, to determine the severity of ASD. A 6-point scale measured communication, ranging from uses a device for communication to communicates in a meaningful manner. Parents used a 5-point scale to rate behavior, ranging from requires 24-hr supervision to manage behavior to behaves like a typical adult. Parents rated their adult child’s ability to socialize using a 5-point scale that ranged from socializes with family only to has a group of friends/goes out with others from the community. Higher scores on these three measures indicated greater severity of ASD for adult children. No total scores were obtained. Ratings for the three areas were used as separate independent variables for the analysis.

ADLs

Parents rated their adult child’s ability to perform 11 tasks associated with BADLs and IADLs using a 4-point scale, ranging from requires total assistance to perform the task to able to perform the task independently. The 11 tasks were separated into categories—BADLs and IADLs. Mean scores for BADL were calculated by summing the numeric values for six items pertaining to personal hygiene/grooming, eating, dressing, bathing, toileting, and mobility. Similarly, mean scores for IADL were calculated using five items: community participation, bed making/cleaning, cooking simple meals, managing money, and public transportation. Mean scores obtained for the BADLs and IADLs reflected the original response categories.

Caregiver burden

Novak and Guest (1989) developed a multidimensional inventory, the Caregiver Burden Inventory (CBI), to measure perceptions of caregivers of people diagnosed with Alzheimer disease. Items on three subscales (time dependence, developmental, and emotional burden) used a 5-point Likert-type scale, ranging from 1 for not at all descriptive to 5 for very descriptive. Higher scores on caregiver burden indicated a greater burden for caregivers of adults with ASD. Permission to adapt this scale for use with caregivers of adults with ASD was obtained from the authors. The CBI has been tested for reliability and validity by Novak and Guest (1989). Their findings indicated good internal consistency and validity, with Cronbach’s alpha coefficients for time dependence (.85), development (.87), emotional (.81). The alpha coefficient of .91 for the present sample was similar to prior studies (Chou et al., 2003; Novak & Guest, 1989).

To measure the impact of finances on caregiving as part of caregiver burden, three items from the Caregiver Reaction Assessment (CRA) were used (Given et al., 1992). A 5-point Likert-type scale ranging from strongly disagree to strongly agree was used to rate the three items. The internal consistency of the scale as reported by Given et al. (1992) was adequate. The Cronbach’s alpha coefficient of .81 for the current sample was consistent with the alpha coefficient of .87 reported by Given et al. (1992). The mean scores for the CBI and the CRA were combined to obtain a composite measure of caregiver burden. For the purpose of the present study, only the composite scores were used to measure caregiver burden.

Interviews

Researchers used semi-structured interviews to collect qualitative data from 51 parents who volunteered from the parent study. Over a 2-month period, the researcher contacted the parents who volunteered to be interviewed. The semi-structured telephone interviews typically lasted an hour. To ensure consistency for all interviews, the researcher used an interview script to ask the nine open-ended questions. The parents provided in-depth information on their caretaking for their adult children with ASD. In their responses, the parents discussed their involvement in helping their children perform BADLs and IADLs. Each participant received a US$20 gift card at the completion of the interview.

Data Analysis

Quantitative analysis

The quantitative data were analyzed using IBM-SPSS ver. 25.0. Prior to conducting the analysis, the Explore command of IBM-SPSS was used to test the data for normality. The results indicated the data were normally distributed. The analysis used stepwise multiple linear regression analysis to determine whether caregiver burden (the criterion variable) could be predicted from the severity of ASD (communication, behavior, and socialization), and BADLs and IADLs were used as the predictor variables. When using the stepwise method for variable entry, the IBM-SPSS program enters the variable that explains the greatest amount of variance in the criterion variable, and then on the next step, enters the variable accounting for the second greatest amount of variance. This process continues until the statistically significant variables have been entered. All decisions on the statistical significance of the findings were made using a criterion alpha level of .05.

Qualitative analysis

A professional transcription company transcribed the interviews, with all identifying information redacted to assure the confidentiality of the participants. The company verified the transcriptions prior to returning them to the first author. The first author further verified the accuracy of the transcripts by listening to the audio recordings to confirm the typed copy. The first author made changes such as typographical errors or mistakes in punctuation to the transcripts. Atlas.ti 7 software was used to code interview responses. A line-by-line analysis was used to develop initial codes and subthemes. After using the method described by Saldaña (2016), codes were collapsed and consolidated to produce the themes. Each of the authors completed the coding and then met to discuss the codes and reach agreement on the themes that emerged from the interview data. After determining themes in the parent responses, the first author sent the information to the second author for confirmation. Member checking was completed by having 10 parents review themes for accuracy.

Trustworthiness

According to Guba and Lincoln (1989), trustworthiness is a function of credibility, transferability, dependability, and confirmability. In the present study, credibility was established by maintaining a reflexive journal to record the events that occurred while interviewing the parents. Ten randomly selected parents participated in member checking using an email to determine the accuracy of the emergent themes. The parents made no changes to member checking, supporting the accuracy of the emergent themes. Transferability was limited by conducting interviews over the telephone using an interview script with parents who volunteered. Therefore, each interview was treated as having equal weight (Merriam, 2009). Dependability, the third criterion for trustworthiness, concerns with coding the interview consistently and not providing additional weight to some while minimizing other comments (Koch, 1994). The coding was done independently by each of the authors who then met to compare consistency in findings. Further research on the topic using similar methods should produce comparable findings. Therefore, confirmability was established by determining whether the data and analysis were credible, transferable, and dependable.

Findings

Quantitative

An intercorrelation matrix determined the strength and direction of the relationships among the criterion and predictor variables. Each predictor variable was significantly related to caregiver burden in a negative direction. The correlations ranged from −.19 for behavior to −.51 for BADLs. All correlations among the predictor variables were statistically significant (see Table 2).

Table 2.

Descriptive Statistics and Intercorrelation Matrix: Caregiver Burden, Severity of ASD, ADLs.

	M	SD	1	2	3	4	5	6
1	2.55	.73	–
2	3.88	1.23	−.50**	–
3	3.43	.87	−.19**	.23**	–
4	2.93	1.40	−.42**	.70**	.76**	–
5	3.41	.65	−.51**	.59**	.29**	63**	–
6	2.44	.95	−.49**	.57**	.18**	.52**	.73**	–

Note. 1 Caregiver Burden; 2 Communication; 3 Behavior; 4 Social; 5 BADLs; 6 IADLs. ASD = autism spectrum disorder; ADLs = activities of daily living; BADLs = basic activities of daily living; IADLs = instrumental activities of daily living.

p < .01.

A stepwise multiple linear regression analysis determined whether the five predictor variables, severity of ASD as measured by communication, behavior, and socialization, and BADLs and IADLs, could explain the variance in caregiver burden. The three predictor variables, BADLs, behavior, and IADLs, entered the stepwise multiple linear regression analysis, accounting for a total of 34% of the variance in caregiver burden. BADLs accounted for 26% of the variance in caregiver burden, while behavior accounted for an additional 6% of the variation. IADLs explained 2% of the variance in caregiver burden. When comparing the β-weights, behavior (−.26) was the strongest predictor of caregiver burden, followed by BADLs (−.21) and IADLs (−.19). The negative direction of the relationships between the predictor and criterion variables indicated that lower scores associated with less competency of adults with ASD to perform BADLS and IADLs, as well as poorer behavior, predicted greater caregiver burden. Two predictor variables, behavior and socialization, did not enter the regression analysis, indicating they were not statistically significant predictors of caregiver burden (see Table 3).

Table 3.

Stepwise Multiple Linear Regression Analysis: Caregiver Burden, Severity of ASD, ADLs.

Predictor variable	b	SE_b	B	R ²	∆R²
BADLs	−.24	.08	−.21	.26	—
Behavior	−.22	.05	−.26	.32	.06
IADLs	−.15	.05	−.19	.34	.02

Note. F(3, 311) = 51.53, p < .001. ASD = autism spectrum disorder; ADLs = activities of daily living; BADLs = basic activities of daily living; IADLs = instrumental activities of daily living.

Qualitative

Completion of the web-based survey preceded the follow-up interviews (N = 51). These interviews were analyzed and themes emerged that supported the quantitative findings. Behavior was the strongest predictor of caregiver burden in the quantitative analysis and discussed at length by parents during their interviews. Most parents indicated that burden was associated with severity of ASD, specifically their adult child’s behavioral challenges. For example, parents discussed issues of physical violence that could cause possible harm to parents and the home environment. In addition, behavioral challenges contributed to the adult child having difficulty in obtaining and maintaining employment or remaining in educational settings. Parents described a range of challenges associated with their adult child’s behavior. One mother stated, “I realized at that time that he actually could have killed me.” Another parent reported,

A couple years ago, Sam’s behavior was really out of control. He had a super bad sleep disorder and was physically aggressive. I mean, full on physical aggression, punching, spitting in your face . . . he had gotten to where he was physically big enough to intimidate and force his way through my wife so it was almost impossible to leave the home.

Because of the violence exhibited by this adult with ASD, his parents were forced to quit their jobs and stay home to manage his behavior. An indirect effect was the parent’s inability to socialize because of behavior challenges associated with having an adult child with ASD. Many family and friends of parents of an adult with ASD are unable to understand the parent’s lack of spontaneity in responding to social events, even as simple as going out for coffee.

Both BADLs and IADLs were statistically significant predictors of caregiver burden in the stepwise multiple linear regression analysis. In the qualitative analysis, some parents discussed BADLs. However, IADLs, such as driving a car or managing money, concerned some parents. While some adults with ASD were able to drive, many were unable or uncomfortable driving, resulting in difficulty in getting to and from work, postsecondary education, or social activities. Because of the added responsibility from their adult child’s inability to drive or have access to transportation, parental burden increased for many parents.

Parents voiced mixed responses about BADLs in their interviews. Parents indicated their adult children with ASD were physically incapable of completing BADLs or those who were capable, but reluctant or refused to complete these tasks independently. While many parents supported their children in doing their BADLs, some parents performed some of the BADLs as part of their adult child’s daily routine. Much of the support provided by parents focused on hygiene, such as showering. Many parents indicated that their adult child with ASD was able to shower, but either had to be reminded or refused to do it. For example, one parent said, “Hygiene is a huge challenge; you think at his age, I wouldn’t have to say to him, ‘when did you take a shower?’” She further indicated that her son reacted to this retort, saying people should like him for who he is, not how he looks or smells. Some adult children required specific help to shower. One parent asserted that “. . . getting him to shower was ridiculous and I have had to do things like prep his bathroom routine . . . ‘okay, here’s the shampoo in little cups, here’s everything you need, just get in there.’” In some cases, the parents actually had to shower their adult child with ASD, which added to their caregiver burden. For instance, another parent of two daughters with ASD, 16 and 19 years of age, stated,

I get home at six and there will be staff there until seven, so from six to seven we’ll do an update on what happened all day. And then at seven o’clock, we have to do showers. And they still both need assistance with all that stuff.

The parents did not provide any consistent information on other types of BADLs that might add to caregiver burden.

One IADL that was considered problematic by many parents in the follow-up interviews was the ability to manage money. The parents of adult children with ASD were generally unable to understand basic concepts regarding the money they earned through employment or from government assistance (Supplemental Security Income [SSI]). For example, a parent of an adult who was high functioning reported that

He’s terrible with money. . . . he can’t keep two nickels without spending them and so here I am rationing out his money and paying his bills. How is he ever going to have any independence if he can’t be trusted with any money?

Another parent indicated that she could not foresee her son as being able to manage money. She added “. . . he can’t really manage his money really well. He’ll go out and buy gifts for people when he gets his check in and then I have to give him gas money or he doesn’t have money to eat.” The mother of a son with ASD who was very independent asserted that while her son has not made any money of his own, money management was something they were going to work on for the future. In a similar manner, another parent indicated that she is going to have to help her son learn to manage money so that he can buy a car or rent an apartment if he gets a job.

Discussion

This study examined the influence of BADLs and IADLs, along with severity of ASD on the extent of caregiver burden reported by parents of adult children with ASD. The uniqueness of this study was unique was its focus on understanding the functional realities of adult children with ASD and its association with caregiver burden. Most research on caregivers of ASD centered on parents of young children, with the population of adults with ASD and their caregivers largely ignored. This research provides some insight into ADLs and severity (communication, behavior, and socialization) of ASD on caregiver burden experienced by their parents.

The results of the stepwise multiple linear regression analysis and the interview responses from parents indicated that behavior as a measure of the severity of ASD was the strongest contributor to increased caregiver burden. While research found that communication was associated with caregiver burden (Pastor-Cerezuela et al., 2016), perhaps behavior may be a challenge that masks the contribution of communication deficits to parents’ caregiving burden. The qualitative analysis provided support that the behavior of adults with ASD was a contributing factor to caregiver burden. Parents who perceived their adult child’s behavior as more disruptive tended to have higher caregiver burden. Consistent with previous findings, the severity of disruptive behavior was found to contribute to increased caregiver burden (Kanne & Mazurek, 2011). Behavior in individuals with ASD could range from somewhat typical to uncontrollable. Parents reported that some behaviors exhibited by individuals with ASD were stressful and caused harm to individuals or property. Interviews with parents supported the difficulty of dealing with their adult child’s atypical behavior that affected all aspects of their lives. Acceptable, age-appropriate behavior is a learned skill that needs to be reinforced over the lifetime of individuals with ASD through consistency, repetition, and fairness.

During the interviews, parents indicated they had little or no time to worry about how to help their adult child become more independent in performing IADLs or BADLs because managing their behavior was difficult. One parent commented that “behavior is so intense that I can’t think about anything else, but ADLs . . . However, dressing and bathing my kid wears me out.” In the present study, BADLs and IADLs were found to be statistically significant predictors of caregiver burden, suggesting that mastering these skills for children and adolescents with ASD was important in reducing caregiver burden for parents.

BADLs were a stronger predictor of caregiver burden than IADLs. This finding appears to be logical. When adult children with ASD had difficulty in performing basic personal tasks, such as bathing and dressing, they were not going to be able to complete higher-order tasks, such as finding transportation or managing money. When parents are required to spend time and energy performing simple tasks for their adult children with ASD, their caregiver burden often increases. In contrast, parents whose adult children could perform these skills independently were less likely to experience high levels of caregiver burden. Consistent with previous research findings, the ability to perform BADLs was more impactful in reducing caregiver burden than the ability to perform IADLs (Reed et al., 2016).

Implications for Practice

Behavior is an important indicator of caregiver burden, with adults with ASD often exhibiting erratic behavior, resulting in greater challenges for parents and family members. Social workers should be mindful of the needs of caregiver needs to alleviate stress experienced from their adult child’s atypical behavior, such as negative outbursts.

Organizations and social service agencies should develop behavioral support programs for adults with ASD to continue to reinforce positive behavior and support parents who are managing their adult child’s difficult behaviors. In addition, these programs should help family members and friends learn to work with adults with ASD to perform BADLs and IADLs. If the individual with ASD could become more independent in completing basic daily tasks, caregiver burden could be diminished.

Organizations and agencies need to provide their staff with the necessary training to work with individuals with ASD across the life span. Providing behavioral support generally has been limited to young children and adolescents, with this support minimized or eliminated at the onset of adulthood. Professionals working with parents and adult children need to be prepared to help with transitioning from childhood to adulthood.

Social workers and other health professionals should be cognizant of the unique needs of aging parents caring for adults with ASD. Practitioners should take a prospective approach when developing treatment plans and programming, as many services that teach and address ADL development often are directed at and limited to young children. Results from the present study indicated that the inability to perform BADLs and IADLs independently was a statistically significant predictor of caregiver burden. These findings suggest a need for the targeted development of these skills in adults with ASD. An emphasis needs to focus on developing BADL and IADL independence among individuals with ASD that can enable the sustainability of long-term caregiving with lower levels of caregiver burden.

Study Limitations and Directions for Further Research

The present study had a number of limitations, including the relative homogeneity of the sample, with most participants being female, White, and having higher socioeconomic statuses (i.e., high levels of education and annual family income). The homogeneous sample may have limited the variability in which parents reported caregiver burden. The sample was recruited from ASD support groups and local and national organizations, which may have excluded potential participants who were not part of formal groups or connected to formal supports. Another limitation is the survey was administered using Qualtrics, an online survey program. Potential participants who did not have a computer or access to the internet were unable to participate in the study. In addition, not having a formal, diagnostic tool to measure ASD severity was a limitation. There are a number of tools that could obtain an objective measure of the degree and severity of ASD diagnosis, which were not used for this study.

Future research is needed to expand the study of caregiver burden in older parents who continue to provide care for their adult children with ASD. This research should include ASD checklists to measure the severity of ASD and instruments, such as the Vineland Adaptive Behavior Scales (Saulnier & Klaiman, 2018), to determine levels of BADL and IADL functioning from different perspectives (parents, teachers, supervisors, and the individual diagnosed with ASD). Because of the statistically significant findings for caregiver burden as a global construct, additional research should explore the effects of severity of ASD and ADL independence on specific constructs measuring caregiver burden.

Conclusion

This research examined perceptions of aging parents of individuals diagnosed with ASD regarding caregiver burden, severity of ASD, and performing BADLs and IADLs. Based on the findings, aging parents had greater caregiver burden when attempting to manage their adult child’s behavior and BADLs. Support is needed to help these parents reduce caregiver burden and the demands associated with BADLs. Health care providers should be aware of the needs and challenges faced by these caregivers. As the number of aging caregivers increases, research is needed to create an awareness of their concerns as they continue their lifelong caregiving responsibilities for their adult children with ASD.

Footnotes

Acknowledgements

The authors would like to thank the many parents for participating in this study and for sharing their stories. They also would like to thank the local, statewide, and national organizations and support groups across the United States for their assistance with the recruitment for this study.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Christina N. Marsack-Topolewski

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