Comparison of Perceptions of Activities of Daily Living of Adult Children with Autism Among Three Groups of Aging Caregivers

Abstract

Many aging parents care for adult children with autism spectrum disorder (ASD) and an additional loved one. This exploratory study compared differences among compound 1 (caring for an additional family member), compound 2 (caring for a typically developing minor child), and noncompound (solely caring for an adult child with ASD) caregivers on perceptions of the degree of support that care recipients need to perform specific types activities of daily living (ADL) that care recipients need assistance to complete. Each caregiver cared for at least one adult child with ASD. Results from a web-based survey completed by 320 aging caregivers were examined using Kruskal-Wallis ANOVA tests for independent samples. Compound 1 and noncompound caregivers were more likely to be involved in assisting their adult children with some ADLs when compared with compound 2 caregivers. Findings provide insight into the realities of caregivers with regard to ADL needs of their adult children.

Keywords

compound caregivers caregiving adults with autism basic activities of daily living instrumental activities of daily living

What this paper adds

• This paper adds to the gap in literature on aging compound caregivers by comparing differences among three groups on perceptions of needs for ADL support.

• This paper contributes to the information demonstrating that adults with ASD were more independent in completing ADLs if there was another sibling present in the family.

• This paper points out the need for research focusing on aging caregivers of adults with ASD.

Applications of study findings

• To support aging caregivers, professionals should be aware of the extent that adults with ASD need help with ADLs.

• Advocating for appropriate services is an integral need to best support adults with ASD and their aging family caregivers.

• Professionals should understand the paid and unpaid support networks to help aging caregivers.

This article compares caregiving experiences for an adult child with autism spectrum disorder (ASD) among three groups of aging caregivers (compound 1, compound 2, and noncompound caregivers). The term child is used to refer to the proband relationship between the caregiver and the adult with ASD. Each of these caregivers are providing care for at least one adult child with ASD, with compound 1 caregivers providing care for an additional family member or friend with a debilitating condition and compound 2 caregivers providing care for an additional typically developing child under 18 years of age. Noncompound caregivers include individuals whose sole caregiving responsibility is for an adult child with ASD. As caregivers age, their ability to provide care changes as they experience their own age-related challenges (Marsack & Hopp, 2019).

The stress and coping theory by Lazarus and Folkman (1984) is used as this study’s conceptual framework, with the terms stress, appraisal, and coping providing a way to examine caregivers’ perceptions of the abilities of their adult child with ASD to complete ADLs independently. Lazarus and Folkman (1984) defined stress as “the relationship between the person and the environment, which considers characteristics of the person on one hand, and the nature of the environmental event on the other” (p. 21). Appraisal is an essential element of stress as it considers perceptions of the relevance of a situation while accounting for the lived experiences of adult children with ASD and their aging caregiver parents (Olshevski et al., 1999). Given the subjective nature of stress and variations in caregiving situations, examining parents’ appraisals of their caregiving experiences are important.

The lifelong nature of care associated with caring for a child with a developmental disability, such as ASD, can be ongoing and exhausting (Band-Winterstein & Avieli, 2017; Perkins, 2011). Being a caregiver can be especially challenging when trying to balance everyday tasks (e.g., work, self-care, social life), while juggling care for multiple care recipients with different abilities and needs (Abramson, 2015; Hines et al., 2012). At times, the caregiving roles can be mitigated with the presence of a typically developing child who is able to assume some of the tasks associated with providing care to siblings with ASD (Lee & Burke, 2018). Through their assistance, parents’ caregiving burden can be reduced and the adolescents can be prepared to assume primary responsibility for their siblings when the parents are no longer able to provide care.

More parents are caring for children with ASD because of increases in the number of individuals with this condition. Recent statistics indicated that ASD was diagnosed at a rate of 1 in 59 children (Centers for Disease Control and Prevention [CDC], 2018) and is a condition that often requires assistance throughout one’s lifetime (Chamak & Bonniau, 2016). An estimated 6.6 million individuals are diagnosed with ASD (5.3 million adults and 1.3 million children) globally, with many relying on aging caregivers to provide daily support and assistance (Dietz et al., 2020; Nightingale, 2012). The majority of adults with ASD continue to reside with families in adulthood (Chamak & Bonniau, 2016), with approximately 70% of adults with ASD requiring some level of support from caregivers, usually parents (Howlin et al., 2004). Roux et al. (2017) reported that only 20% of adults with ASD in 2015 were able to live independently.

While the population of older adults with ASD continues to increase (Piven & Rabins, 2011), understanding the nature of providing care has not been explored sufficiently. Providing support for individuals with ASD and their caregivers as they age has been described as a “looming crisis”. In Forrester-Jones’ report, aging caregivers indicated how challenges change over time when caring for their loved ones with ASD and other disabilities. Despite a large body of research devoted to children with ASD and their parents, less attention has focused on aging parental caregivers of adults with ASD (Wallace et al., 2016). Normative age-related declines and physical health changes for both caregivers and care recipients can be expected to occur across the lifespan (Marsack-Topolewski & Wang, 2022; Smith et al., 2012). Such declines may pose additional challenges for aging caregivers who may be at the frontline of providing support to assist with and address these physical declines. Caregiving challenges may be exacerbated by having to provide care for an additional loved one, such as a spouse or aging parent, in addition to their adult child with ASD.

Activities of Daily Living

Adults with ASD often require assistance with completing different types of ADLs. To date, a paucity of literature has focused on caregiver perceptions of types of ADL assistance needed to support care recipients. Tasks associated with meeting basic needs (e.g., feeding, bathing, dressing, grooming, work, and homemaking) are often referred to as activities of daily living (ADL). Two types of ADLs are discussed in the present study, including basic (BADLs) and instrumental ADLs (IADLs). According to the American Occupational Therapy Association (AOTA; 2014), BADLs comprise self-care tasks such as bathing, dressing, and toileting. IADLs involve activities (e.g., cooking simple meals and managing money) that are needed for people to interact with others and their environment.

Depending on the severity of ASD, caregivers often assist or fully perform ADLs for their care recipients. Adults with ASD and other care recipients with challenges may experience physical, intellectual, and/or pragmatic limitations that inhibit their ability to independently provide self-care. Compound 1, compound 2, and noncompound caregivers may need to assist with a variety of ADLs as part of their caregiving responsibilities.

Children diagnosed with ASD often benefit from early interventions to develop age-appropriate functional independence (Eikeseth et al., 2012), with focus on these skills declining as individuals with ASD approach adulthood. A 10-year longitudinal study was conducted by Smith et al. (2012) using a sample of 397 adolescents and adults with ASD to determine changes in ability to perform ADLs over time. The findings indicated initial improvements in ADL independence during adolescence and emerging adulthood. However, the ability of adults with ASD to perform ADLs plateaued in their late 20s and continued to decline in their early 30s (Clarke et al., 2021; Smith et al., 2012).

Smith et al. (2012) continued that 83.5% of adults with ASD required assistance to complete their ADLs. Among physical challenges associated with caring for an adult with ASD is completion of ADLs. Individuals with ASD often experience challenges with regard to ADLs, particularly for individuals with impaired intellectual functioning (Magiati et al., 2014). As individuals with ASD reach adulthood, their ability to complete these tasks independently often decline (Smith et al., 2012). Likewise, Clarke et al. (2021) indicated that adults with ASD experienced declines in daily living skills as they transitioned from high school to early adulthood. Given that ADLs were no longer a predominant focus following completion of formal public education, the lack of focus on daily living skills may contribute to these observed declines (Sarris, 2014).

When adult children with ASD do not receive needed support or therapy to practice and maintain ADL independence, caregiver burden increases for aging parents (Bal et al., 2015; Weaver, 2015). The findings of these studies suggested a need for ongoing assistance and support focusing on maintaining and/or improving ADLs for individuals with ASD throughout the lifespan. To mitigate the loss of independence associated with completing ADLs requires continued therapeutic support and practice of ADL skills. Challenges to help with ADLs are expected to increase when compound caregivers are responsible for assisting two or more adults with ASD and other debilitating conditions to complete tasks associated with ADLs.

Compound Caregiving

A paucity of studies has been published on compound caregiving for individuals with intellectual and developmental disabilities (IDDs), including ASD (Lee et al., 2022). Lee et al. (2022) found two qualitative and six quantitative studies that had been published on compound caregivers of those with IDD. Of the existing literature, differences in perceptions of assistance needs between compound and noncompound caregivers were documented (Lunsky et al., 2017; Perkins, 2010; Perkins & Haley, 2010). Compound caregivers provide care for two or more individuals with developmental disabilities or other health-related challenges. For the purpose of this study, compound 1 caregivers provide care for an additional family member or friend with a debilitating condition. Compound 2 caregivers provide care for an additional typically developing child under 18 years of age. Noncompound caregivers include individuals whose sole caregiving responsibility is for an adult child with ASD.

Research by Lunsky et al. (2017) provided support that compound caregivers have unique experiences compared to noncompound caregivers. In their study, both groups of caregivers were caring for at least one individual with an intellectual and/or developmental disability. Their work acknowledged the need to consider the entire family situation and context, including when families are caring for more than one loved one. Significantly elevated levels of stress and the associated burden often result from providing care for more than one individual with a disability (Lunsky et al., 2017).

Despite the reasons for being a compound caregiver, the role can be particularly challenging and often is unrecognized even amongst those who intersect with caregivers. Compound caregivers in the Perkins and Haley (2010) research were those caring for an adult child with IDD and another person with a disability (usually parent, spouse, or sibling). Compound caregivers lacked enough help from family and friends that limited the amount of personal time they had for their own needs (Perkins & Haley, 2010). Perkins (2010) described challenges experienced by compound caregivers, including diminished personal well-being and reduced social network/support, decreased stress resilience, as well as problems associated with meeting the needs of multiple care recipients. She recommended interventions to assist compound caregivers and decrease burden associated with caring for multiple individuals.

Rationale for the Study

This exploratory study will address the gap in the literature regarding compound and noncompound caregivers’ perceptions of the degree of support that care recipients need to perform specific types of ADLs. Building on the work of caregiving and disability research; roles, demands, perceptions, and experiences of caregiving may differ for compound and noncompound caregivers (Burke et al., 2015; Lunsky et al., 2017; Perkins, 2011). Compound caregivers often are tasked with the lifelong nature of providing care to a loved one with a developmental disability, such as ASD, while intermittently or consistently providing care to another family member or friend. When faced with providing care to an additional care recipient(s), caregiving demands increase exponentially (Marsack-Topolewski, 2021; Perkins, 2011). The lifelong nature of caregiving requires tremendous time and sacrifice by caregivers who lack adequate support from formal service providers (Dillenburger & McKerr, 2011; Perkins, 2011).

A leading research expert in compound caregiving, aging, and disability argued that “assessment for support services requires re-examination” (Perkins, 2011, p. 6). While there is a general consensus that caregivers are generally overworked and undervalued and that greater caregiver support is needed nationally, perceptions of caregivers with regard to ADLs are rarely examined. Given the documented unique realities and circumstances experienced by compound caregivers, it is likely that their perceptions of needs would differ from noncompound caregivers. As such, this exploratory study intends to provide an appraisal of ADLs among three groups of caregivers (compound 1, compound 2, noncompound caregivers).

Purpose of the Study

The research questions that were tested in this study include

1. To what extent do noncompound caregivers’ perceptions of the ability of adult children with ASD to perform BADLs differ significantly from those of compound 1 and compound 2 caregivers?

2. To what extent do noncompound caregivers’ perceptions of the ability of adult children with ASD to perform IADLs differ significantly from those of compound 1 and compound 2 caregivers?

Methods

Research Design

A nonexperimental causal comparative research study was used to compare compound and noncompound caregivers on their perceptions of their adult children’s ability to perform ADLs. ADLs were divided into two types: basic and instrumental. Prior to collecting data, permission was obtained from the Institutional Review Board (#012615B3X) from Wayne State University. Prior to taking the survey, participants were required to read the consent form. If they agreed to participating, they were asked to answer yes and were directed to the survey. For individuals who answered no, they were thanked for their time and then exited from the survey.

Recruitment

The principal investigator (PI) contacted local, state, and national organizations that were focused on providing support for caregivers of children and adults with ASD. Disability or autism-specific organizations were contacted by the PI to assist in the recruitment process. Recruitment materials were published in newsletters and flyers, on websites, or via email by these organizations. Parents who had participated also recruited friends and acquaintances who had adult children with ASD through word of mouth. The PI attended support groups meetings and reached out to schools to recruit additional participants who met the criteria for inclusion in the sample. To be included in the sample, parents had to have at least one adult child (over 18 years of age) who had been diagnosed with ASD at some point in his/her life, the adult with ASD had to be residing in the home of the parent caregiver, were at least 50 years of age, and had access to a computer and the Internet to complete the web-based survey.

Parental caregivers who were interested in participating in the study were provided with the link to the Qualtrics website, where they were directed to the survey. A total of 353 parents of adult children with ASD accessed the survey. The responses were checked for eligibility and completeness. Of the 353 surveys that were originally submitted, 81 did not meet the inclusion criteria and 23 submitted before completing the entire survey, leaving 249 surveys that were used for analysis to address the research hypotheses.

Participants

Parents were divided into three groups, based on participant response regarding the following question, “Do you provide care for anyone else other than your adult child with ASD (e.g., spouse, parent, another child or dependent)?” The three caregiver groups included the following: (a) compound 1 caregivers (caregiving for adult child with ASD and another care recipient, n = 44, 17.7%), (b) compound 2 caregivers (caregiving for adult child with ASD and a typically developing child under 18 years of age, n = 47, 18.8%), and (c) noncompound caregivers (adult child with ASD only, n = 158, 63.5%). Most caregivers were between the ages of 50 and 59 years and female. Amongst the three caregiver groups, caregivers indicated higher than average education and income levels. Demographic characteristic differences between the three groups of caregivers were not evident based on chi-square tests of independence. (Table 1.)

Table 1.

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

Parents’ demographics	Compound 1 (n = 44)		Compound 2 (n = 47)		Noncompound (n = 158)		Total (N = 249)
Parents’ demographics	n	%	N	%	n	%	n	%
Parents’ age
50–59	29	65.9	42	89.4	108	68.4	179	71.9
60–69	15	34.1	5	10.6	44	27.8	64	25.7
70 and over	0	0.0	0	0.0	6	3.8	6	2.4
χ² (4) = 11.58, p = .021	—	—	—	—	—	—	—	—
Gender of parent completing survey
Male	6	14.0	11	23.4	26	16.7	43	17.5
Female	37	86.0	36	76.6	130	83.3	203	82.5
χ² (2) = 1.59, p = .453	—	—	—	—	—	—	—	—
Ethnicity
African American/Black	0	0.0	2	4.3	3	1.9	5	2.0
American Indian/Alaskan Native	1	2.3	0	0.0	0	92.9	1	0.4
Caucasian/White	38	86.3	41	87.2	145	2.7	224	90.8
Hispanic	3	6.8	2	4.3	4	0.6	9	3.6
Multiethnic	1	2.3	1	2.1	1	1.9	3	1.2
Other	1	2.3	1	2.1	3	92.9	5	2.0
χ² (12) = 12.14, p = .434	—	—	—	—	—	—	—	—
Marital status
Single, never married	0	0.0	3	6.4	3	1.9	6	2.4
Married	38	86.3	32	68.1	118	75.5	188	76.2
Divorced	4	9.1	8	17.0	23	14.6	35	14.2
Widowed	1	2.3	1	2.1	8	5.1	10	4.0
Co-habiting	0	0.0	1	2.1	1	0.6	2	0.8
Separated	1	2.3	2	4.3	3	2.3	6	2.4
χ² (10) = 9.83, p = .456	—	—	—	—	—	—	—	—
Educational level of respondent
Less than high school	1	2.3	0	0.0	0	0.0	1	0.4
High school/GED	3	6.8	1	2.1	5	3.2	9	3.6
Some college	7	15.9	8	17.0	20	12.7	35	14.1
Associates degree/technical school	7	15.9	6	12.8	23	14.6	36	14.5
Bachelor’s degree	12	27.3	14	29.8	49	31.0	75	30.1
Master’s degree	11	25.0	11	23.4	47	29.6	69	27.7
Doctorate/professional degree	3	6.8	7	14.9	14	8.9	24	9.6
χ² (12) = 9.70, p = .642	—	—	—	—	—	—	—	—
Annual family income
Less than $20,000	2	5.7	3	7.9	8	5.9	13	6.3
$20,001–$40,000	5	14.3	2	5.3	10	7.4	17	8.2
$40,001–$60,000	7	20.0	8	21.1	26	19.3	41	19.7
$60,001–$80,000	6	17.1	4	10.5	27	20.0	37	17.8
$80,001–$100,000	7	20.0	8	21.1	14	10.4	29	13.9
More than $100,000	8	22.9	13	34.1	50	37.0	71	34.1
χ² (10) = 9.02, p = .530	—	—	—	—	—	—	—	—
Caregiving for others^a
Child with ASD only	0	0.0	0	0	158	100.0	158	63.4
Another typically developing child	0	0.0	47	100.0	0	0.0	47	18.9
Parents	30	68.2	0	0.0	0	0.0	30	12.0
Spouse	26	59.9	0	0.0	0	0.0	26	10.4
Other relatives	7	15.9	0	0.0	0	0.0	7	2.8
Friends and anyone else	2	4.5	0	0.0	0	0.0	2	0.8

Compound 1: Adult child with ASD and another person with a disability; Compound 2: Adult child with ASD and other typically developing child(ren), Noncompound: Adult child with ASD only.

^aMultiple responses, adds to more than 100%.

The mean ages of the adult children did not differ significantly among the three groups: compound 1 caregivers (M = 26.07, SD = 7.71), compound 2 caregivers (M = 23.37, SD = 7.21), and noncompound caregivers (M = 25.28, SD = 5.39; F [2, 281] = 1.85, p = .159). Table 2 presents adult child demographics based on the type of caregiver. Although chi-square tests for independence were not significant, differences in skill level (e.g., communication, behavior, socialization skills) of the 3 groups of adult children exhibited differences.

Table 2.

Frequency Distributions: Demographics of Child With ASD (N = 320).

Parents’ demographics	Compound 1 (n = 44)		Compound 2 (n = 47)		Noncompound (n =158)		Total (N = 249)
Parents’ demographics	N	%	n	%	n	%	n	%
Gender of child with ASD
Male	38	86.4	36	76.6	128	81.0	202	81.1
Female	6	13.6	11	3.4	30	19.0	47	18.9
χ2 (2)= 1.42, p = .492	—	—	—	—	—	—	—	—
Employment status
Employed full-time	3	7.0	1	2.1	11	7.0	15	6.0
Employed part-time	7	16.3	3	6.4	29	18.4	39	15.7
Working with job coach	5	11.6	8	17.0	18	11.4	31	12.5
Employed in a sheltered work shop	2	4.7	2	4.3	5	3.2	9	3.6
College	1	2.3	2	4.3	6	3.8	9	3.6
High School/Post-sec program	5	11.6	13	27.6	33	20.8	51	20.5
Unemployed	12	27.9	7	14.9	24	15.2	43	17.6
Unable to work	7	16.3	11	23.4	28	17.7	46	18.5
Other	1	2.3	0	0.0	4	2.5	5	2.0
χ2 (16) = 14.40, p = .569	—	—	—	—	—	—	—	—
Educational status
University/college	3	6.8	0	0.0	14	9.1	17	6.9
Community college	3	6.8	2	4.3	15	9.7	20
Vocational training program	3	6.8	3	6.4	3	1.9	9	8.2
Public school—extended program	10	22.7	21	44.6	39	25.4	70	3.7
Unable to attend educ program	5	11.4	4	8.5	14	9.1	23	28.5
Other	20	45.5	17	36.2	69	44.8	106	9.4
χ2 (10) = 15.39, p = .119	—	—	—	—	—	—	—	—
Communication ability
A wide variety of topics in a meaningful way	13	29.6	12	25.5	58	36.7	83	33.4
Limited range of topics in a meaningful way	18	40.9	12	25.5	63	39.9	93	37.4
Needs and wants in some meaningful way	3	6.8	8	17.0	12	7.6	23	9.2
Basic needs and wants	7	15.9	10	21.4	13	8.2	30	12.0
Little meaningful communication	3	6.8	4	8.5	8	5.1	15	6.0
Communicates with a device	0	0.0	1	2.1	3	1.9	4	1.6
Other	0	0.0	0	0	1	0.6	1	0.4
χ2 (12) = 15.58, p = .211	—	—	—	—	—	—	—	—
Behavior
Typical age adult behavior	1	2.3	2	4.3	6	3.8	9	3.7
Requires minimal prompting	25	56.8	17	36.2	82	52.6	124	50.2
Requires substantial prompting	15	34.1	22	46.7	52	33.3	89	36.0
Engages in self-injurious behavior	2	4.5	4	8.5	9	5.8	15	6.1
Requires 24-hour supervision	1	2.3	2	4.3	7	4.5	10	4.1
χ2 = (8) = 5.64, p = .687	—	—	—	—	—	—	—	—
Social behavior
Has a group of friends	7	15.9	8	17.0	14	8.9	29	11.6
Is part of a social group	15	34.2	8	17.0	44	27.9	67	26.9
Would like friends, but has none	6	13.6	10	21.3	42	26.6	58	23.3
Is not able to make friends	3	6.8	5	10.6	16	10.1	24	9.6
Socializes with family onlyχ² (5)	13	29.5	16	34.0	41	25.9	70	28.2
Other	0	0.0	0	0.0	1	0.6	1	0.4
χ2 (10) = 10.00, p = .44187	—	—	—	—	—	—	—	—

Instruments

Two sections from the web-based survey were used to assess parental caregivers’ demographic characteristics and their perceptions of their adult child’s ability to perform ADLs. The larger survey (Quality of Life among Parents of Adult Children with Autism Spectrum Disorder) used 36 questions (with some including multiple items) and included mixed questions, including forced-choice, fill in the blank, Likert-based response categories, and open-ended questions. The variables measured in the larger study included quality of life, parent characteristics, adult child with ASD characteristics, social support (formal and informal), caregiver burden, financial impact, as well as living arrangement. Communication, behavior, and socialization skills for their adult children with ASD were reported by each of the three parental caregiver groups. The rating scales measured these skills from best to worst possible outcomes.

Some sections of the larger survey included previously valid, reliable surveys. These included the following: (a) WHOQOL-BREF, (b) the ENRICHD Social Support Index (Mitchell et al., 2003), (c) Novak and Guest’s Caregiver Burden Inventory, and (d) the Caregiver Reaction Assessment (Given et al., 1992), with some revisions made with the permission of the authors. Some sections were obtained from the review of literature on caregiver and ASD, including the list of ADLs and social supports.

Demographics

The PI developed the demographic survey as part of the web-based survey. The survey obtained information on personal characteristics of the aging caregivers. The response formats for the items on this section of the survey included forced-choice, multiple choice, and short answer. In some instances, parents could write comments to provide additional information when a specific response to a categorical item was not applicable (e.g., marital status, employment status, level of education, etc.).

Activities of daily living

Aging caregivers were asked to rate the amount of support that their adult children with ASD required for the 11 ADLs: personal hygiene/grooming, eating, dressing, bathing, toileting, mobility, community participation, bed making or cleaning, cooking simple meals, managing money, and public transportation. The 11 tasks were separated into two categories—BADLs and IADLs. The ratings were from 1 = person with ASD can perform the task independently to 4 = requires total assistance to perform the task. Higher scores indicated less independence and more reliance on the caregiver to complete the task. Previous research (Marsack-Topolewski, 2021) examined total scores for BADLs and IADLs among this sample. For the purpose of this study, ratings for each ADL were examined separately to determine which of the 11 ADLs required the most assistance from aging caregivers and if there was a difference in the dependence on the caregiver between compound and noncompound caregivers. The Cronbach alpha coefficient of .91 for the ADL section of the survey provided support that the ADLs had excellent internal consistency as a measure of reliability. Face validity was obtained from the review of the scale by the expert panel.

Professional Feedback

Professionals who had experience working with individuals with ASD and their parental caregivers were asked to review the survey. These professionals included a special education teacher, teacher consultant, speech therapist, social worker, and transition coordinator. After reviewing the survey items for relevance and appropriateness, the PI incorporated their feedback into the survey prior to releasing it on Qualtrics.

Data Analysis

The survey responses were downloaded from Qualtrics to IBM-SPSS, ver. 27.0. The scores were reviewed by the PI to check for missing values and possible outliers. A missing values analysis was completed, showing that from 0 to 5 cases had missing values for any single variable. Because of the number of cases (N = 249), the missing values for continuous variables were replaced with the mean for that variable. None of the categorical variables had missing values. When tested for outliers, none were found that materially affected the data analysis. To test the hypotheses, Kruskal-Wallis one-way analysis of variance (KW-ANOVA) tests for more than two independent variables were used. The dependent variables, ratings for ADLs, were ordinally scaled and did not meet the assumptions for parametric tests, such as one-way ANOVA. To control for possible Type 1 errors, A Bonferroni adjustment was made to control for Type 2 errors. The alpha level for statistical significance was changed from .05 to .005 (.05/11 categories of ADLs).

Findings

The 11 types of ADLs were categorized into two groups, BADLs and IADLs. The BADLs (bathing/showering, dressing, eating/feeding, functional mobility, personal hygiene and grooming, and toileting) typically are performed on a daily basis and are concerned with personal needs, while IADLs (community-based activities, making bed/cleaning room, cooking simple meals, managing money, and taking public transportation) are more global and may be completed “as needed.” Parental caregivers rated their adult children’s ability to perform these ADLs independently, using a 4-point scale that ranged from 1 = person with ASD can perform the task independently to 4 = requires total assistance to perform the task. The ratings for each ADL were used as dependent variables in KW-ANOVA. The independent variable in these analyses was type of caregiver (compound 1, noncompound 2, noncompound).

The results of the KW-ANOVA tests provided evidence that the level of caregiver assistance for two BADLs differed significantly between the three types of caregivers. The obtained H value of 15.25 (p < .001) for bathing/showering provided support that noncompound caregivers (M = 3.55, SD = .87) perceived their adult children as less independent than either compound 1 caregivers (M = 3.48, SD = 1.00), with compound 2 caregivers (M = 3.00, SD = 1.06) reporting their adult children with ASD were the most independent. Personal hygiene differed between compound 1 (M = 3.30, SD = .98), compound 2 (M = 2.85, SD = 1.06), and noncompound caregivers (M = 3.28, SD = .88; H = 7.29) but was not statistically significant after application of the Bonferroni adjustment. (Table 3.)

Table 3.

Kruskal-Wallis Analysis of Variance—Basic Activities of Daily Living.

BADL	Mean	SD	Mean rank	H	p*
Bathing/Showering
Compound 1	3.48	1.00	130.67	15.25	<0.001
Compound 2	3.00	1.06	94.86
Noncompound	3.55	0.87	132.39
Dressing
Compound 1	3.57	0.85	123.73	4.84	.089
Compound 2	3.47	0.63	109.22
Noncompound	3.70	0.78	129.29
Eating/Feeding
Compound 1	3.68	0.67	123.26	5.73	.057
Compound 2	3.57	0.53	109.62
Noncompound	3.78	0.65	130.06
Functional mobility
Compound 1	3.66	0.78	122.78	5.16	.076
Compound 2	3.53	0.83	111.35
Noncompound	3.77	0.60	129.68
Personal hygiene
Compound 1	3.30	0.98	133.68	7.29	.026
Compound 2	2.85	1.06	101.66
Noncompound	3.28	0.88	129.53
Toileting
Compound 1	3.64	0.87	127.00	5.91	.052
Compound 2	3.75	0.80	108.79
Noncompound	3.49	0.60	129.27

Note. Compound 1: ASD and other care recipients; Compound 2: ASD and another typically developing child; Noncompound ASD only.

The results of the KW-ANOVA provided evidence that community-based activities differed between compound 1 (M = 2.93, SD = 1.02), compound 2 (M = 2.35, SD = 1.08), and noncompound caregivers (M = 2.90, SD = 1.06, H = 9.88). When ratings for cooking simple meals were compared, compound 1 caregivers (M = 2.75, SD = 1.04) had higher scores than either compound 1 caregivers (M = 2.09, SD = 1.10) or noncompound caregivers (M = 2.64, SD = 1.16, H = 9.99). Managing money differed among the three types of caregivers, noncompound caregivers (M = 2.08, SD = 1.07) had higher scores than compound 1 caregivers (M = 2.02, SD = 1.07) and compound 2 caregivers (M = 1.70, SD = 1.109, H = 6.24). These results were not statistically significant after application of the Bonferroni adjustment to the alpha level. The results for making bed/cleaning room and taking public transportation were not significant. (Table 4.)

Table 4.

Kruskal-Wallis Analysis of Variance—Instrumental Activities of Daily Living.

IADL	Mean	SD	Mean rank	H	p*
Community-based activities
Compound 1	2.93	1.02	124.33	9.88	.007
Compound 2	2.35	1.08	90.17
Noncompound	2.90	1.06	123.39
Making Bed/Cleaning room
Compound 1	3.00	1.14	131.80	3.20	.202
Compound 2	2.68	1.11	108.84
Noncompound	2.99	0.94	127.14
Cooking simple meals
Compound 1	2.75	1.04	136.20	9.99	.007
Compound 2	2.09	1.10	96.14
Noncompound	2.64	1.16	129.71
Managing money
Compound 1	2.02	1.07	127.26	6.24	.044
Compound 2	1.70	1.10	102.47
Noncompound	2.08	1.07	130.32
Taking public transportation
Compound 1	2.00	1.22	120.97	4.14	.126
Compound 2	1.67	1.02	103.90
Noncompound	2.12	1.24	126.07

Note. Compound 1: ASD and other care recipients; Compound 2: ASD and another typically developing child; Noncompound ASD only.

Discussion

The purpose of this exploratory study was to compare how noncompound caregivers’ perceptions of ADL assistance needed by their adult children with ASD differ from compound 1 caregivers (who also provide care to an additional person with a disability) and compound 2 caregivers (who have a typically developing child under 18 years of age residing in their home). Substantial differences were found for two BADLs, including bathing/showering and personal hygiene. No statistically significant differences were obtained for the other BADLs. In each case, compound 2 caregivers reported less assistance was needed by their adult children with ASD than compound 1 or noncompound caregivers. Compound 2 caregivers had a typically developing child in addition to the adult child with ASD. While these typically developing children were under 18 years of age, they may have been old enough to assist with the care of the adult with ASD. Typically developing siblings often begin involvement in caregiving for their adult brother/sister with ASD at an early age, which often continues across the lifespan (Saxena & Adamsons, 2013). For example, many typically developing children often provide care to their sibling with ASD, which prepares them for becoming primary caregivers when their parents are no longer able to provide care for their adult child with ASD (Nuttall et al., 2018).

Caregivers are responsible for many tasks related to ADLs to support their care recipient(s). Individuals with ASD who are able to assume some or many of the tasks associated with bathing, dressing, and eating can increase their independence. When aging parental caregivers are providing care for two or more individuals, it would seem time required to support ADL needs would increase. As respondents were asked to indicate their perceptions of the independence of their adult child with ASD and not all of their care recipients, this finding may be logical. The results of the present study indicated that compound 2 caregivers were less likely to be as involved in providing care for BADLs, when compared to compound 1 and noncompound caregivers. However, care should be taken when interpreting this result because the severity of the ASD or the type of disability of the other care recipients was unknown.

Caregivers in the present sample were highly educated, and of higher financial status than the national average. They might be able to pay for personal assistance to help their adult children with ASD manage their ADLs. In addition, caregivers with higher educational levels may be aware of methods to improve their adult child’s daily self-care routines. Additional research may be important in examining the effects of higher socioeconomic status in helping adults with ASD complete their ADLs successfully.

Although noncompound caregivers tended to report greater assistance needs than compound 1 or compound 2 caregivers, as evidenced by higher mean scores on IADLs, the differences were not statistically significant. IADLs are important tasks associated with living, but are not essential in the same way as BADLs. Caregivers who have a typically developing child under 18 years of age may receive assistance when their child with ASD are performing these IADLs. Participating in community activities is optional and can be skipped if time is not available. Managing money and using public transportation are skills that may not be used every day and alternative means are available when necessary. For example, if adults with ASD are not able to use public transportation independently, they may get rides from family members or friends. Making a bed or cooking a simple meal is a helpful skill, but is not compulsory on a daily basis. Many of these IADLs typically are not completed daily, but are beneficial skills.

When an aging caregiver is providing care for two or more individuals with special needs, the amount of time needed for assistance is limited. Care recipients may need to become more self-sufficient and perform some tasks associated with BADLs and IADLs independently. In some cases, adults with ASD may not perform a task as well or in the same way as the caregiver, but the task is completed, promoting independence of the care recipient.

Implications for Practice

Health care providers, educational professionals, and social workers that intersect with aging caregivers should be aware of the functional status of adults with ASD. Understanding the extent to which adults with ASD need help on a daily basis to complete tasks associated with BADLs and IADLs is necessary in providing help to their aging caregivers, especially those who are providing care for multiple individuals with disabilities. Because of variants in skill levels of adults with ASD, some parents shower, dress, and feed their adult children. Advocating for appropriate services is an integral need to best support adults with ASD and their aging family caregivers. Programs should be designed to support ADL skill building, especially for adults with ASD who require great caregiver assistance with ADLs (Wise et al., 2020). Referrals could be made to have an aide come to the home and help with these tasks.

Professionals should receive training to augment their cognizance of the varied needs of compound caregivers. When a care recipient’s needs change or that care recipient dies—care is no longer needed in the same way. However, care for the child with ASD typically remains constant, with many requiring care across the lifespan. Caregiving demands change with each care recipient (some may need care for a short period of time and others can become lifelong care recipients). Professionals can support both compound and noncompound caregivers in offering support by coordinating respite care to reduce their “role overload” and improve ADL independence (Perkins, 2011).

In addition to working with families to use paid supports, such as respite care, professionals should understand the complex network of support available in the family context. Although parents are often the primary caregivers, many family members (including siblings of adult children with ASD) may be available to provide additional caregiving and tangible support. The typically developing child can provide support and assistance, especially in completing ADLs, making a positive contribution to overall caregiving tasks and responsibilities. While not a focus of this study, the findings indicated that caregivers with typically developing children were likely to report their adult child with ASD was more independent in completing their ADLs. Opportunities to support avenues for such support and/or augment the currently provided support from other family members should be a priority to spread out the caregiving demand.

The literature provided evidence that ADL status tends to decline in adults with ASD over time (Smith et al., 2012), supporting the need to continue receiving assistance from aging parents and other caregivers to maintain or augment their skill levels. When compound caregivers are helping more than one individual, the adult with ASD may have to practice the task daily out of necessity. Through practice, the skill is maintained, which could explain why compound caregivers reported providing less assistance in performing ADLs with their adult children with ASD. Further research should examine the nuances that may foster independence in completing ADLs among these care recipients and ways to alleviate demands placed on aging caregivers.

Limitations and Directions for Future Research

Some study limitations should be acknowledged. The sample (compound 1, compound 2, and noncompound caregivers) was relatively homogeneous. Caregivers included in the present study were mainly female, White, highly educated, and of higher financial status than the national average. Given that the recruitment strategies, in part, sought to obtain participants from autism- or disability-specific organizations and support groups, the sample may have disproportionately included participants who were involved with such organizations. Future studies should seek to obtain a heterogeneous sample so that a diverse range of caregivers are represented in the findings. The severity of disability of individuals with ASD, the functional status and time required to help and provide care were not determined for other care recipients.

An additional limitation of the present study is that factors (e.g., additional stressors, time spent helping care recipients with ASD, additional support from other care providers, the presence of an additional typically developing child, level of support needs for all care recipients) beyond having a single care recipient or multiple care recipients were not explored. Future research is needed to explore these factors that impact care recipients’ abilities to perform ADLs independently. To determine the effects of multiple care recipients on caregivers’ actual provision of ADL support needs, future work should examine the actual provision of ADL support needs. In addition, it is well established that caregiving needs and their appraisal of their caregiving situation change over time. Many factors (e.g., caregiver health, health of care recipient, external life stressors, impact of life events, and demands) may contribute to changing needs and experiences of both caregivers and their care recipients. Future research should use a longitudinal approach to examine changes over time in caregiving and understand the cumulative impact of stressors on one’s caregiving situation.

Despite the aforementioned limitations, this is the first known study to describe three groups of caregivers and their perceptions based on ADL needs of their care recipient(s). The findings of this exploratory study indicate the need for continued research across different types and levels of caregivers. Additional characteristics should be explored in future studies regarding the adult child with ASD and the severity of ASD symptoms, as well as information on any additional care recipient(s) regarding type and severity of symptomatology. Specifically, caregiver perceptions of ADL needs and actual provision of ADL support should be explored. Future studies should consider these factors to determine the extent of assistance that caregivers need to complete ADLs for their adult child with ASD.

Conclusions

Adults with ASD and their caregivers will continue aging together. As caregivers’ age, they may also assume caregiving roles for other loved ones that can pose additional demands on their time and energy. One avenue to minimize caregiver involvement in ADLs may be to continue ADL education and support for individuals with ASD across the lifespan and their aging caregivers. Increasing functional independence of adults with ASD could be helpful to both aging compound and noncompound caregivers in reducing involvement in ADLs.

Footnotes

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 disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported funding from Eastern Michigan University’s College of Health and Human Services Research Award and University Centers for Excellence in Developmental Disabilities Education, Research and Coordination—CORE Grant.

Ethics Statement

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. All procedures performed in this study involving human participants were in accordance with the ethical standards of Wayne State University’s Institutional Review Board.

IRB Approval

IRB protocol/human subjects approval number: 012615B3X

ORCID iD

Christina N. Marsack-Topolewski

References

Abramson

T. A.

(2015). Older adults: The “panini sandwich” generation. Clinical Gerontologist, 38(4), 251–267. https://doi.org/10.1080/07317115.2015.1032466

American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process. American Occupational Therapy Association. http://www.terapia-ocupacional.org.ar/wp-content/uploads/2014/05/3%C2%AA-Edicion-Marco-de-Trabajo-2013.pdf

Bal

V. H.

Kim

S. H.

Cheong

Lord

(2015). Daily living skills in individuals with autism spectrum disorder from 2 to 21 years of age. Autism, 19(7), 774–784. https://doi.org/10.1177/1362361315575840

Band-Winterstein

Avieli

(2017). The experience of parenting a child with disability in old age. Journal of Nursing Scholarship, 49(4), 421–428. https://doi.org/10.1111/jnu.12305

Burke

M. M.

Fish

Lawton

(2015). A comparative analysis of adult siblings' perceptions toward caregiving. Intellectual and Developmental Disabilities, 53(2), 143–157. https://doi.org/10.1352/1934-9556-53.2.143

Centers for Disease Control and Prevention. (2018). Autism spectrum disorders: Data & statistics. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/autism/data.html

Chamak

Bonniau

(2016). Trajectories, long-term outcomes and family experiences of 76 adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(3), 1084–1095. https://doi.org/10.1007/s10803-015-2656-6

Clarke

E. B.

McCauley

J. B.

Lord

(2021). Post–high school daily living skills in autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 60(8), 978–985. https://doi.org/10.1016/j.jaac.2020.11.008

Dietz

P. M.

Rose

C. E.

McArthur

Maenner

(2020). National and state estimates of adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(12), 4258–4266. https://doi.org/10.1007/s10803-020-04494-4

10.

Dillenburger

McKerr

(2011). How long are we able to go on?” Issues faced by older family caregivers of adults with disabilities. British Journal of Learning Disabilities, 39(1), 29–38. https://doi.org/10.1111/j.1468-3156.2010.00613.x

11.

Eikeseth

Klintwall

Jahr

Karlsson

(2012). Outcome for children with autism receiving early and intensive behavioral intervention in mainstream preschool and kindergarten settings. Research in Autism Spectrum Disorders, 6(2), 829–835. https://doi.org/10.1016/j.rasd.2011.09.002

12.

Forrester-Jones

(2019). Confronting a looming crisis: People with learning disabilities and/or autism and their carers getting older. University of Bath. https://www.bath.ac.uk/publications/report-confronting-a-looming-crisis/attachments/Final_FullDocument.pdf

13.

Given

C. W.

Given

Stommel

Collins

King

Franklin

(1992). The Caregiver Reaction Assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing & Health, 15(4), 271–283. https://doi.org/10.1002/nur.4770150406

14.

Hines

Balandin

Togher

(2012). Buried by autism: Older parents’ perceptions of autism. Autism, 16(1), 15–26. https://doi.org/10.117/1362361311416678

15.

Howlin

Goode

Hutton

Rutter

(2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 45(2), 212–229. https://doi.org/10.1111/j.1469-7610.2004.00215.x

16.

Lazarus

Folkman

(1984). Stress, appraisal, and coping. Springer Publishing Company.

17.

Lee

C. E.

Burke

M. M.

(2018). Caregiving roles of siblings of adults with intellectual and developmental disabilities: A systematic review. Journal of Policy and Practice in Intellectual Disabilities, 15(3), 237–246. https://doi.org/10.1111/jppi.12246

18.

Lee

C. E.

Burke

M. M.

Perkins

E. A.

(2022). Compound caregiving: Toward a research agenda. Intellectual and Developmental Disabilities, 60(1), 66–79. https://doi.org/10.1352/1934-9556-60.1.66

19.

Lunsky

Robinson

Blinkhorn

Ouellette-Kuntz

(2017). Parents of adults with intellectual and developmental disabilities (IDD) and compound caregiving responsibilities. Journal of Child and Family Studies, 26(5), 1374–1379. https://doi.org/10.1007/s10826-017-0656-1

20.

Magiati

Tay

X. W.

Howlin

(2014). Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: A systematic review of longitudinal follow-up studies in adulthood. Clinical Psychology Review, 34(1), 73–86. https://doi.org/10.1016/j.cpr.2013.11.002

21.

Marsack

C. N.

Hopp

F. P.

(2019). Informal support, health, and burden among parents of adult children with autism. The Gerontologist, 59(6), 1112–1121. https://doi.org/10.1093/geront/gny082

22.

Marsack-Topolewski

C. N.

(2021). Relationship between caregiver burden and basic and instrumental activities of daily living among compound and noncompound caregivers. Journal of Family Social Work, 24(4), 299–319. https://doi.org/10.1080/10522158.2020.1861157

23.

Marsack-Topolewski

C. N.

Wang

(2022). Dimensions of caregiver burden between compound and noncompound caregivers of adults with autism. Journal of Gerontological Social Work, 65(4), 402–420. https://doi.org/10.1080/01634372.2021.1969609

24.

Mitchell

P. H.

Powell

Blumenthal

Norten

Ironson

Pitula

C. R.

Froelicher

E. S.

Czajkowski

Youngblood

Huber

Berkman

L. F.

(2003). A short social support measure for patients recovering from myocardial infarction: The ENRICHD Social Support Inventory. Journal of Cardiopulmonary Rehabilitation, 23(6), 398–403. https://doi.org/10.1097/00008483-200311000-00001

25.

Nightingale

(2012). Autism spectrum disorders. Nature Reviews. Drug Discovery, 11(10), 745–746. https://doi-org.ezproxy.emich.edu/10.1038/nrd3892

26.

Nuttall

A. K.

Coberly

Diesel

S. J.

(2018). Childhood caregiving roles, perceptions of benefits, and future caregiving intentions among typically developing adult siblings of individuals with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(4), 1199–1209. https://doi.org/10.1007/s10803-018-3464-6

27.

Olshevski

Katz

Knight

(1999). Stress reduction for caregivers. Brunner/Mazel.

28.

Perkins

E. A.

(2010). The compound caregiver: A case study of multiple caregiving roles. Clinical Gerontologist, 33(3), 248–254. https://doi.org/10.1080/07317111003773619

29.

Perkins

E. A.

(2011). Compound caregivers: Overlooked and overburdened [White paper]. University of South Florida, Florida Center for Inclusive Communities. http://flfcic.fmhi.usf.edu/docs/FCIC_CompoundCaregivers_070811.pdf

30.

Perkins

E. A.

Haley

W. E.

(2010). Compound caregiving: When lifelong caregivers undertake additional caregiving roles. Rehabilitation Psychology, 55(4), 409–417. https://doi.org/10.1037/a0021521

31.

Piven

Rabins

(2011). Autism spectrum disorders in older adults: Toward defining a research agenda. Journal of the American Geriatrics Society, 59(11), 2151–2155. https://doi.org/10.1111/j.1532-5415.2011.03632.x

32.

Roux

A. M.

Rast

J. E.

Anderson

K. A.

Shattuck

P. T.

(2017). National autism indicators report: Developmental disability services and outcomes in adulthood. Life Course Outcomes Program. A.J. Drexel Autism Institute, Drexel University. file:///C:/Users/owner/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/Natl_Autism_Indicators_Report_2017_Final_(1).pdf

33.

Sarris

(2014). Daily living skills: A key to independence for people with autism. Interactive Autism Network. https://iancommunity.org/ssc/autism-adaptive-skills

34.

Saxena

Adamsons

(2013). Siblings of individuals with disabilities: Reframing the literature through a bioecological lens. Journal of Family Theory & Review, 5(4), 300–316. https://doi.org/10.1111/jftr.12021

35.

Smith

L. E.

Greenberg

J. S.

Seltzer

M. M.

(2012). Social support and well-being at mid-life among mothers of adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(9), 1818–1826. https://doi.org/10.1007/s10803-011-1420-9

36.

Wallace

G. L.

Budgett

Charlton

R. A.

(2016). Aging and autism spectrum disorder: Evidence from the broad autism phenotype. Autism Research, 9(12), 1294–1303. https://doi.org/10.1002/aur.1620

37.

Weaver

L. L.

(2015). Effectiveness of work, activities of daily living, education, and sleep interventions for people with autism spectrum disorder: A systematic review. American Journal of Occupational Therapy, 69(5), 1–11. https://doi.org/10.5014/ajot.2015.017962

38.

Wise

E. A.

Smith

M. D.

Rabins

P. V.

(2020). Correlates of daily functioning in older adults with autism spectrum disorder. Aging & Mental Health, 24(10), 1754–1762. https://doi.org/10.1080/13607863.2019.1647138