“I'm Glad She Chose Me as Her Parent”: Rewards of Caregiving for Adults With Autism

• Published date: 01 December 2021
• Author: Christina N. Marsack‐Topolewski,Tam E. Perry,Keith T. Chan
• Date: 01 December 2021
• DOI: http://doi.org/10.1111/fare.12515

C N. M-TEastern Michigan University

T E. PWayne State University

K T. CHunter College–City University of New York

“I’m Glad She Chose Me as Her Parent”: Rewards

of Caregiving for Adults With Autism

Objective: This research examines perceptions

of rewards associated with caregiving experi-

enced by older parents of adult children with

autism spectrum disorder (ASD).

Background: More individuals with ASD are

reaching adulthood, often requiring some form

of lifelong support from parental caregivers.

Past research has examined caregiving chal-

lenges for adult children with ASD, with little

focus on rewards.

Method: One-on-one, semistructured inter-

views were conducted among 51 parents (aged

50years and older) of adult children (18years

and older) diagnosed with ASD. Interviews

focused on exploring experiences of older

parental caregivers. Using a phenomenolog-

ical approach, data were coded through a

line-by-line analysis using Atlas.ti 7 software.

Results: Four themes emerged from interview

responses: (a) pride in adult child’s progress

and growth, (b) feelings of personal competence,

(c) changed perspective on life, and (d) deeper

connections to others.

Conclusion: Our ndings provide insight into

how older parents of adult children with ASD

experience rewards from caregiving.

School of Social Work, Eastern Michigan University,

317 Everett L. Marshall Building, Ypsilanti, MI 48197

(ctopole1@emich.edu).

Key Words: adult children, autism spectrum disorder, care-

giving, older parental caregivers,rewards.

Implications: Practitioners who work with indi-

viduals with ASD can help parental caregivers

and their families nd and promote strengths

by highlighting the rewards in the caregiving

process.

According to the Centers for Disease Control

and Prevention (2019), approximately 1 in

59 children has been identied with autism

spectrum disorder (ASD) in the United States.

Although ASD manifests in early childhood,

individuals do not outgrow this condition

and are affected across the lifespan, requiring

some form of support throughout adulthood

(Howlin et al., 2013; McDougle, 2013; Wright

et al., 2013).

This study breaks ground by examining

how older parents of adults with ASD per-

ceive rewards while meeting the challenges and

burdens associated with caregiving across the

lifespan. For the purposes of this study, a care-

giver is a parent who provides support (physical,

emotional, nancial, etc.) to their adult child

with ASD. Caregivers include those with adult

children who either live with them or live in a

different housing arrangement and continue to

require support from their parents.

Past research has focused primarily on

challenges experienced by parents of young

children with ASD (Lounds et al., 2007; Wright

et al., 2013). According to the Government

Accountability Ofce (2015), only 2% of

funding is earmarked for research on adults with

Family Relations 70 (December 2021): 1465–14761465

DOI:10.1111/fare.12515