Journal of Family Social Work

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“I worry about his future!” Challenges to future

planning for adult children with ASD

Christina N. Marsack-Topolewski & Jillian Marie Graves

To cite this article: Christina N. Marsack-Topolewski & Jillian Marie Graves (2020) “I worry about
his future!” Challenges to future planning for adult children with ASD, Journal of Family Social
Work, 23:1, 71-85, DOI: 10.1080/10522158.2019.1578714

To link to this article: https://doi.org/10.1080/10522158.2019.1578714

Published online: 21 Feb 2019.

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JOURNAL OF FAMILY SOCIAL WORK
2020, VOL. 23, NO. 1, 71–85
https://doi.org/10.1080/10522158.2019.1578714

“I worry about his future!” Challenges to future planning

for adult children with ASD
Christina N. Marsack-Topolewski and Jillian Marie Graves
Eastern Michigan University, School of Social Work, Ypsilanti, Michigan

ABSTRACT ARTICLE HISTORY

The aging process for parental caregivers of adult children with Received 27 June 2018
autism spectrum disorder (ASD) can be complicated and filled with Revised 12 January 2019
worry about the unknown. This qualitative phenomenological Accepted 31 January 2019
study examined concerns and barriers of these parents that could KEYWORDS
inhibit their future planning. One-on-one interviews were con- Adults with autism spectrum
ducted with 51 parents of adult children with ASD. Parents were disorder; aging caregivers;
older than age 50 years and their children were older than age future planning
18 years. During the interview process, parents discussed future-
oriented concerns related to their adult child’s care. Based on
results of the content analysis from interview responses, four
themes emerged from interview responses related to parents’
fears for the future, including difficulty identifying caregiving sup-
port for the future, barriers to making plans/decisions, fear of the
unknown, and feeling the need to make plans and decisions now.
Although many parents understood that plans for the future were
needed, they often experienced difficulty in initiating the process.
Some of their concerns caused stress that further inhibited their
planning. To assist parents in planning, social workers need to be
educated regarding parents’ unique needs to help them work
through the planning, separate planning into manageable pieces,
and provide support at each step of the process.

For most people, the death of a parent represents a tragic, though normal part of
life (Bonanno & Kaltman, 2001; Stikkelbroek, Bodden, Reitz, Vollebergh, & van
Baar, 2016). However, for people diagnosed on the autism spectrum disorder
(ASD), the aging and death of a parent often means they lose a key advocate and
caretaker; often one of the few enduring and significant relationships that they
have had. Although parents of individuals with ASD understand the gravity that
this loss can have on their adult child, they often avoid future planning (Herrema
et al., 2017). Aging parents approach their future with apprehension as the shift in
their child’s care may be associated with the loss of safety, emotional intimacy, and
control (Brezis et al., 2015).
Although concerns of the parents often focus on financial needs or other
physical aspects of caretaking, the potential loss of the emotional relationship

CONTACT Christina N. Marsack-Topolewski ctopole1@emich.edu Eastern Michigan University, School of

Social Work, 206H Everett L. Marshall Building, Ypsilanti, Michigan 48197
© 2019 Taylor & Francis Group, LLC
72 C. N. MARSACK-TOPOLEWSKI AND J. M. GRAVES

can be worrisome to parents who may be socially isolated (Dillenburger &

McKerr, 2011). Caregiving for an adult child with ASD differs from caregiving
for an aging spouse or other relative (Baumbusch, Mayer, Phinney, &
Baumbusch, 2017). Parents may feel that other relatives could lack the same
emotional investment in providing care as they do or may be burdened by
caregiving tasks which may result in avoiding future planning for their adult
child with ASD (Dillenburger & McKerr, 2011).
Caregiving arrangements are often difficult to formulate because the needs of
individuals with ASD are complex and varied depending on severity, functional
status, and existence of comorbid conditions. Although some adults with ASD
may need help with activities of daily living (e.g., making meals, dressing, etc.),
others might require more emotional social support, such as interacting with
supervisors at work or making friends. Much of the care provided to adults with
ASD is not discernable to outsiders and has been termed by Grant (2007) as
“invisible care” or “hidden care.” Invisible care is defined as ensuring that the adults
with ASD are happy, needs are being met, and can maintain their dignity (Grant,
2007). Family members, such as adult siblings, must be aware of the care that their
adult relatives with ASD will need when the parents are no longer able to be active
caregivers (Heller & Kramer, 2009). Failing to include family members in future
planning may result in the adults with ASD receiving inadequate or inappropriate
support when their parents are not able to care for them (Coyle, Kramer, &
Mutchler, 2014).
Planning for future needs of adults with ASD is a normal developmental task of
their parental caregivers (Bowey & McGlaughlin, 2007; Ryan, Taggart, Truesdale-
Kennedy, & Slevin, 2014). Parents may be fearful about the future because
a comprehensive plan has not been completed for their adult child’s caregiving
needs (Bowey & McGlaughlin, 2007; Mansell & Wilson, 2010). Parents often
contemplate how they will manage the stress of caring for their child’s needs
into old age (Grossman & Webb, 2016) and what will happen to their adult child
after they are no longer able to provide care. These parents feel that they must rely
on others to provide care for their adult child and hope that family members will
assume these responsibilities. Identifying someone to provide care on an ongoing
basis is not a simple task. In addition, these parents are concerned that other
people will not have the same knowledge and wisdom of caregiving for an adult
with ASD, including being able to navigate a service delivery system and under-
stand their child’s often atypical behavior (Moodie-Dyer, Joyce, Anderson-
Butcher, & Hoffman, 2014; Sosnowy, Silverman, & Shattuck, 2017).

Problem statement
As children diagnosed with ASD age into adulthood, caregiver concerns and
needs change, with future planning becoming more important (Cheak-
Zamora, Teti, & First, 2015). A paucity of literature has been written on
 JOURNAL OF FAMILY SOCIAL WORK 73

the needs of aging parents in planning for the future of their adult children
with ASD, with much of the extant research focusing on the needs of
younger children (Wright, Brooks, D’Astous, & Grandin, 2013). However,
the aging process for parents and their children with ASD is complex,
warranting examination. Because of the gap in the literature, this article
examines concerns that aging parents of adult children with ASD have
regarding the future and barriers that may inhibit planning.
The research questions developed for this study are:

(1) What are the lived experiences of aging parents regarding future care
of their adult children with ASD?
(2) What barriers do aging parents experience that disrupt future planning
for their adult children with ASD?

Methods
Recruitment
Following Institutional Review Board (IRB) approval from Wayne State
University, the principal investigator (PI) contacted local, statewide, and
national organizations of autism groups, as well as practitioners who interfaced
with adults with ASD and their parents to support recruitment efforts. These
organizations and practitioners helped recruit organizational members by pla-
cing information and a link to this study on their websites, newsletters, and/or
via email to encourage member participation. Face-to-face recruitment efforts at
locations, such as support groups, also were used to inform potential participants
about the study. Other parents were recruited through snowball sampling,
including recruitment of parents through other study participants. The web-
based survey asked parent respondents if they would be interested in participat-
ing in a follow-up interview. A total of 320 parents completed the quantitative
survey to examine caregiver burden and quality of life.
Many parents (186 out of 320) volunteered to participate in semistructured
interviews after completing a web-based questionnaire (Marsack, 2016). Data for
the parent study were collected for 3 months with people who were interested in
follow-up interviews randomly selected throughout this period. A sample of 51
(27.4%) parents were contacted and participated in the follow up interview. The PI
scheduled the one-on-one interviews that were audio recorded using the
telephone.

Sample
This study consisted of 51 parents whose ages ranged from 50 to 74 years,
with the majority between 50 and 59 years (66.7%). Information on age was
74 C. N. MARSACK-TOPOLEWSKI AND J. M. GRAVES

obtained from the parent study as demographic data were not collected from
the interview participants. Forty-five of the 51 parents were mothers. These
parents lived in geographically diverse areas of the United States, including
suburban and rural areas. Most parents had at least one other child, with
some reporting another child diagnosed with ASD or other chronic condi-
tions. All names and other identifying information were redacted to maintain
the confidentiality of the respondents.
The ages of the adult children ranged from 18 to 44 years, with emerging
adults from 18 to 25 comprising the majority (66.9%). The data on age of the
adult child was obtained from the parent study and is not available for the
children of the interview participants. Forty-one parents had adult children with
ASD who were male, with 10 parents having a daughter with ASD. These
demographics coincided with literature indicating that men are diagnosed
approximately four times more often than females (Christensen et al., 2016).
Most of the adult children with ASD in the parent study were either receiving
public education (27.9%) or had recently aged out of public schooling (19.1%).
The parents reported variability in their adult children’s ability to function
socially, communicate, complete activities of daily living, and be employed.

Procedure
The present study uses a qualitative phenomenological research design to
examine the lived experiences of aging parental caregivers of adult children
with ASD. Prior to conducting the present study, practitioners working with
individuals with disabilities were consulted regarding the readability and
relevance of interview questions. These practitioners provided feedback
after reviewing the proposed interview questions. The PI used their sugges-
tions to improve interview questions in terms of readability and phraseology.
The interviews were conducted primarily by phone, with one interview
taking place in person over a 2-month period. An interview script, with nine
open-ended questions was used for parent interviews. Questions were
intended to obtain information regarding parents’ experiences with caring
for an adult child with ASD. Thus, questions focused on participants’ quality
of life, use of and satisfaction with formal and informal social support net-
works, and rewards and challenges associated with caregiving (see the appen-
dix for interview questions). The focus of the present study was on responses
to the question on challenges associated with caregiving that provided infor-
mation regarding concerns related to planning for the future and barriers to
caregiving of their adult child with ASD. Additionally, questions collected
information on participants’ personal health and finances. Each interview
participant received a $20 gift card at the completion of the interview.
Interviews were transcribed by a professional transcriptionist. After verifying
the accuracy of the transcriptions, the interviews were coded for analysis using
 JOURNAL OF FAMILY SOCIAL WORK 75

Atlas.ti 7 software. The phenomenological approach included line-by-line ana-

lysis to develop initial codes and subthemes. The PI and the coinvestigator coded
the interview responses separately and then met to discuss their findings. To
ensure that the coders were aware of their potential biases while coding, they
used bracketing as suggested by Creswell and Poth (2018). This coding process
allowed the investigators to arrive at themes inherent in the data. Working
together, the codes and themes were refined by collapsing and consolidating
codes as recommended by Saldaña (2016). To check for accuracy of interpreta-
tions, the PI used member checking with 10 study participants.

Findings
During the interview process, the parents discussed future-oriented concerns
related to their adult child’s care. The themes that emerged from the interview
responses related to parents’ fears for the future included (1) difficulty identify-
ing caregiving support for the future, (2) barriers to making plans/decisions, (3)
fear of the unknown, and (4) feeling the need to make plans and decisions now.

Difficulty identifying caregiving support for the future

Presented as a separate theme, but inherent in all of the themes was the difficulty
that parents had in identifying caregiving support for their adult child with ASD in
the future. Many parents described concerns about who would care for and
support their adult child with ASD after they passed away, which was stressful
given the unique needs of individuals with ASD. Even if a potential caregiver could
be identified by parents, they felt their options were limited and caregiving would
be challenging. One factor, raised in the thematic analysis, was the overarching
perception of an inadequate service system. Specifically, many parents described
group homes, adult foster care, and supported living situations as unacceptable.
Some parents retrospectively described putting their young children on a waitlist
for fear that services would not be available in 20+ years.
When thinking about the future, one parent, Sally, disclosed, “If something
happens to me who’s gonna help her? Who is gonna get her through the
meltdown?” The fear that only she truly understood her child’s needs was
presented in the challenge of choosing a caregiver resulting from the belief
that no one would understand the unique needs of her daughter. In addition,
parents who were able to identify a future caregiver (often a family member)
indicated concerns about the anticipated future burden on the potential
caregiver.
Many parents were anxious that the caregivers might not be adequate or
would become overwhelmed by caregiving duties. For example, Mary,
a mother of two sons with ASD:
76 C. N. MARSACK-TOPOLEWSKI AND J. M. GRAVES

I don’t think they’ll need a group home, but they both have their sisters, so after
we’re gone, I know that they will take care of them. We’re a very tight knit, close
family…. I don’t want them to be a financial burden to their sisters.

Although this mother knew that her sons would receive care from their
sisters when she was no longer able to provide care, her concern partially
shifted to apprehension regarding the financial burden associated with her
daughters providing this care.
According to some parents’ experiences, society appears to be unprepared
to meet the needs of aging caregivers and their adult children with ASD. As
related by another parent, Kelly, society is ill prepared for the future:

… society doesn’t know what’s gonna hit them when all these kids grow up …
what you have is a whole bunch of moms dealing with this and when they die,
what’s gonna happen? I don’t think anybody has thought about it.

Barriers to making plans and decisions

Many parents talked about multiple barriers that inhibited decision making
and contributed to delayed planning for the future. Barriers, such as not
having time resulting from current caregiving responsibilities or challenges in
finding and obtaining services for their adult child with ASD, were factors in
their lack of planning for the future. Incongruencies existed among parental
dyads that influenced their perceptions of the caregiving needs of their adult
child. Specifically, within the parental dyad, the mother may want to use
a service and deem it to be appropriate, whereas the father feels it is either
unnecessary or insufficient. The presence of multiple, simultaneous chal-
lenges could have compounded parents’ experiences with barriers to plan-
ning, including the identification of a future caregiver.
Many parents had difficulty in identifying a future caregiver but perceived
that options for paid support were unavailable or inadequate. The task of
choosing a caregiver often pushed parents to sadness. Sarah, a mother,
described this feeling, “So I worry; I worry about his future once mom and
dad are gone, [and] there’s no one left on this earth that loves him or is going
to care for him as much as we did.” Parents worried about how their adult
child would be treated in a group home setting. Some reasons included
perceived inadequacy with possible caregiver supports, as well as dyadic
incongruence in parents’ perceptions of acceptable and realistic future
plans. For example, another mother, Joan, indicated that her husband, Fred:
believes with conviction that he [adult child with ASD] will never move out of our
house, never be able to do that and I don’t believe that. I don’t want to accept that
foregone conclusion…. I think the scariest thing is what I described … he’s got
nobody, nobody.
 JOURNAL OF FAMILY SOCIAL WORK 77

Many caregivers articulated the reality that they were foregoing planning as
they felt that what was available in terms of services was inadequate and
difficult to imagine.
Some parents delayed future planning because they hoped that their child
would develop enough independence that they would not need extensive
support after they were no longer able to provide care. Celeste, a parent
shared that, “We’re gonna have to do something…. I know that we should,
but I haven’t because my goal has always been that he’s independent…. But
I’m going to have to have a backup plan.” These parents felt anxious that
their adult children would likely lack independence and plans for future
caregiving had not yet been made.

Fear of the unknown

Parents described their fears of the unknown that often resulted from their
feelings of loss and control. Many indicated that they realized they were
approaching the end of their ability to provide care and protect their adult
children with ASD. Because of their years of experience with providing care,
they were concerned that another caregiver might not be able to provide the
same level or type of care. Although a relative (e.g., sibling) might be able to
provide the physical care required, meeting their emotional and behavioral
needs could be a challenge. They worried about overwhelming them because
of the time required, isolation, and struggles that caregivers might encounter
when caregiving for an adult with ASD.
Many parents described how they imagined their children’s lives would be after
their death. For some parents, the future was pictured in despairing ways. For
example, Bruce, whose son has ASD stated, “There’s no scenario I see where he
will be able to be completely on his own. And he’s an only child, so when we’re
gone … that’s it, but there’s just no scenario.” Services, such as group homes or
other solutions, generally were not perceived as acceptable. As Grace, a mother,
explained, “What is going to happen when we’re gone…. I lay awake at night and
I go, we have nobody for this boy, nobody … he’s gonna end up going into a group
home situation.” These thoughts often led to paralyzing fears and concerns. Even
for adult children with ASD who functioned more independently, their parents
perceived their own death would be a loss of critical interpersonal support. One
potential consequence of these fears was that many parents delayed planning for
the future. Specifically, in the absence of good caregiving options for their children
with ASD, parents avoided making any future plans for their care.

Feeling the need to make plans and decisions now

Although most parents were reluctant to address the uncertainty of the future
and deferred decision making, some felt the need to start making plans for
78 C. N. MARSACK-TOPOLEWSKI AND J. M. GRAVES

their adult children with ASD. For many parents, mixed emotions, such as
worry and guilt, were perceived as barriers to making plans to identify
a person(s) who could assume the caregiving tasks for their children. One
parent, Laura, indicated that identifying the person who would take over
some of the advocacy and caretaking roles was challenging:
… we’re having a hard time identifying who that person or persons would be …
and it’s hard, you kind of put it on hold. We haven’t done it [future planning] and
then you have all this kind of guilt … so, we’ve actually identified somebody now
and asked them, and they’ve agreed to do it.

This hesitancy in future planning may speak to the complexity of the tasks
that parents perform for their adult children. Parents understand the service
delivery system and have intimate knowledge of their adult children’s car-
egiving needs.

Discussion
As the number of children with ASD enter adulthood and their caregivers
continue to age, families need to access different services to meet family
needs. The lack of available services for adults with ASD and the need for
caregivers to plan for their children’s’ future, as well as their own remains
unanswered. The concerns and needs of parents included in the study also
change, with future planning becoming more important, for the aging care-
giver and the adult with ASD. Aging parents have voiced concerns about the
future and discussed challenges and barriers that may inhibit planning. As
parents age and face mortality, rather than plan for their adult child’s future
needs, they often defer this task. Many parents work to coordinate necessary
services to help their child in the context of an inadequate service delivery
system. As such, the interview responses included concerns about their
child’s future living situations, available caregiving, and service options.
The challenges and barriers that impede parents can result in deferring,
delaying, or not making plans.
Aging parental caregivers of adult children with ASD are at risk for social
exclusion by virtue of having a child with a disability and not sharing similar
parenting experiences with their peers (Marsack & Perry, 2018; Myers,
Mackintosh, & Goin-Kochel, 2009). These parents remain active caregivers
as their children move from childhood to adulthood. The findings of this
study illustrate the experiences of aging parents who assume ongoing car-
egiving roles after their children have reached adulthood. Typically, their
contemporaries are empty nesters. As parents experience increased social
exclusion, they may face barriers to access existing social supports (Marsack
& Perry, 2018). Strengthening informal and formal social supports may
mitigate many challenges that these families encounter as they age
 JOURNAL OF FAMILY SOCIAL WORK 79

(Marsack & Hopp, 2018; Marsack & Samuel, 2017; Handley & Hutchinson,
2013). This support might provide aging parental caregivers with greater
capacity to plan for the future. Supporting the adult child and the aging
caregiver is important in providing assistance during this transitional period
and into the future.
Future planning is difficult for everyone, but especially difficult for aging
caregivers of adult children with ASD. Planning for a child with a disability
can be a monumental task that requires caregivers to come to terms with
their own future, as well as making the transition to another caregiver less
traumatic for their adult children. For parents to feel secure about the future,
the individual who has agreed to assume caregiving responsibilities needs to
have knowledge of ASD and its manifestations, be willing to learn about
available services, and have the time to meet the unique needs of the adult
with ASD. Most parents in the present study expressed fears for the future,
concerns about the available services, and a lack of definitive plans for future
supports for their adult children with ASD.

Implications for practice

The results of this study identified fears that aging parents of adult children with
ASD have regarding planning for future caregiving. The themes that emerged in
the analysis included difficulty identifying caregiving support for the future,
barriers to making plans and decisions, fears of the unknown, and the need to
make plans and decisions now. Future planning will be different relative to the
severity of ASD. For some parents, minimal planning will be required, especially
if their adult child is high functioning. For other parents, planning will be more
extensive, especially if the adult child has multiple impairments.
Aging parents encounter challenges when beginning the process of finding
a caregiver to assume their responsibilities after they are unable to provide
care for their adult child with ASD. Any person that aging parents find to
assume the caregiving role will have to learn about available services and how
to navigate the service delivery system. More comprehensive and commu-
nicated planning by parental caregivers can help diminish the burden in
transitioning care responsibilities to future caregivers (Coyle et al., 2014).
Perhaps agencies that provide support to aging parents could help by having
educational programs for potential caregivers to help them learn about caring
for an adult with ASD.
Parents were concerned about the lack of suitable living arrangements,
specifically group homes, adult foster care, and supported living situations.
Compounding these residential challenges was the reality that adequate housing
had multi-year waitlists and supported housing options were not frequently
offered (Bowen, 2014; Miller, Merryman, Eskow, & Chasson, 2016). Some
parents indicated that they had placed their adult with ASD on a waitlist for
80 C. N. MARSACK-TOPOLEWSKI AND J. M. GRAVES

housing when they were young because of concerns that appropriate services
would not be available when they reached adulthood.
The time involved in providing care can inhibit parents from planning for the
future. As the parent and adult child age, more time may be needed for
completing caregiving tasks, causing some parents to defer planning for the
future (Marsack & Perry, 2018). Supports should be responsive to the develop-
mental needs of the entire family, changing as the needs of the family shift over
the life course (Russa, Matthews, & Owen-DeSchryver, 2015). Family members
should be encouraged to offer social support, including respite care, to allow the
aging parental caregiver to explore different future care options. Social service
agencies need to offer respite care services with adequate staff to ensure that
aging parents can get some relief from their caregiving responsibilities.
The problems associated with the future center on the unknown and
corresponding fears. The literature suggests that caregivers and people with
illnesses and/or disabilities benefit from individualized care (Jensen & Inker,
2015; Robbins, Dollard, Armstrong, Kutash, & Vergon, 2008; Strickler,
Mihalo, & Celedonia, 2018). Organizations that work with aging parents
and adult children with ASD need to provide meetings and seminars led
by social workers who can prepare parents for the future and plan for
individual care needs. The professionals who will be involved in these meet-
ings need to be sensitized to the unique needs of aging parental caregivers
and develop effective strategies to encourage them to plan for the future.
Consistent with previous literature, many parents were concerned with the need
to make plans now, but were at a loss on how to begin the process (Baumbusch
et al., 2017; Taggart, Truesdale-Kennedy, Ryan, & McConkey, 2012). They often
experienced stress due to the absence of future plans. To assist parents in planning,
social workers need to be intentional in helping the parents work through the
planning, dividing planning into manageable pieces, and providing support at each
step of the process. For example, a social worker could help with identifying
a family member who is willing to assume the caregiving role. If an alternative
residence will be needed, the social worker could help the aging caregiver under-
stand different options and the viability of each option.
Parents could develop a written directive that discusses future care for
their adult children with ASD. This directive could include an agreement for
caregiving by a relative or friend when the parent becomes unable to provide
care, housing arrangements, and other pertinent information, such as finan-
cial planning. This directive could be signed by witnesses to assure that the
plan is public and available.
Because aging parents may live in areas where social work help is not readily
available, developing short educational podcasts might be useful to provide
accessible support. The parents with a computer or other digital device could
access these podcasts at convenient times and when they need help. Having
these supports may be instrumental in minimizing fears for the future.
 JOURNAL OF FAMILY SOCIAL WORK 81

Study limitations
This study had limitations that may be addressed in future studies. First,
most participants were recruited through ASD support groups and organiza-
tions, which may exclude participants not associated with these groups.
Despite the use of snowball sampling techniques, families who are more
isolated and those not part of an extended network were unlikely to be
included in the study. Parents who self-selected to participate in the inter-
views may have had specific topics they wanted to discuss. Perhaps they felt
ignored by society and wanted to be heard. The interview responses may
have been more negative as a result.
The severity of the ASD was not verified to determine the overall func-
tioning of the adult child with ASD. This information was not obtained as
severity of ASD was not a focus of the parent study. Most of the parents who
participated in the interviews had children who were described as moderately
or severely impaired. This factor also may have resulted in overly negative
comments from the parents.
A third limitation was that this sample was disproportionately comprised
of participants who were White, female, and had high income and educa-
tional levels. Females had a higher propensity to serve as caregivers and
because of the potential societal and familial expectations, future research
should examine the role of fathers and parents from other ethnic back-
grounds in providing care for this specialized population. Additionally,
families who had fewer financial resources may have different pathways in
terms of planning for the future that were not explored because of the
overrepresentation of people with higher income levels.

Conclusion
Parents described their experiences in managing the care of their adult
children with ASD regarding difficulty in identifying caregiver support for
the future, barriers to making plans/decisions, fear of the unknown, and
feeling the need to make plans and decisions now. Future planning is
essential in helping parents maintain stability in the world of an adult with
ASD. Without appropriate planning for the future, individuals with ASD
may experience inconsistencies in their care which can lead to instability and
chaos in their lives. Identifying caregivers who can assume the role as
seamlessly as possible is important for the aging caregiver’s peace of mind
and the future well-being of the adult with ASD. Education is necessary to
help the potential future caregiver assume the responsibilities of providing
daily care and navigating service delivery systems. The role of social workers
in these scenarios is essential in supporting aging caregivers and their adult
children with ASD before, during, and after this transition.
82 C. N. MARSACK-TOPOLEWSKI AND J. M. GRAVES

Compliance with Ethical Standards

Ethical approval: 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 the Wayne State University Institutional Review
Board.
Informed consent: For the web-based study, the use of an electronic survey program precluded
the use of an informed consent form. In its place an information sheet that required the
participant to indicate that he/she agreed to participate was used. At the end of this web-based
survey, participants were informed that a follow up interview would be conducted with interested
participants. Participants could indicate whether they would be interested in sharing more
information regarding their experiences. For participants interested in sharing more information,
they were asked to select yes and leave their name and contact information. An email was sent to
participants that indicated interest in participating in the follow up interview. In the email sent
and in the interview script read at the beginning of the interviews, participants were notified that
interviews could be recorded and that the recorder could be stopped at any time.

Disclosure statement
No potential conflict of interest was reported by the authors.

ORCID
Jillian Marie Graves http://orcid.org/0000-0001-9164-2532

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Appendix

Interview Questions
1. What types of organizations provide support for you to assist in caring for your adult
child with ASD?
2. What types of support do you receive from each of these organizations? (e.g., financial,
help with physical care of the adult, respite care, etc.)
3. Are you satisfied with the help you are receiving? If no, what is lacking and how can it
be improved?
4. How does caring for your adult child with ASD affect your personal health?
 JOURNAL OF FAMILY SOCIAL WORK 85

5. Where does your adult child with ASD live?

a. How has having an adult child with ASD living with you affected your quality of life?
Or
b. How has having an adult child with ASD living (independently or in a group
home) affected your quality of life?
6. What is the most challenging aspect of caring for your adult child with ASD?
7. What is the most rewarding aspect of caring for your adult child with ASD?
8. How has having an adult child with ASD affected your finances now and in the future?
9. Do you have any additional comments about caring for an adult child with ASD?