“I've grown”: Parent's reflections and familial support

• Published date: 01 December 2023
• Author: Heather Coleman,Lindsay Kozachuk,Campbell McDermid,Bisola Duyile,Hollie Mason,Kari Alberque,Merve Ozdemir
• Date: 01 December 2023
• DOI: http://doi.org/10.1111/fare.12842

RESEARCH

“I’ve grown”: Parent’s reflections and familial support

Heather Coleman

1

|Lindsay Kozachuk

2

|Campbell McDermid

3

|

Bisola Duyile

2

|Hollie Mason

1

|Kari Alberque

1

|Merve Ozdemir

1

1

Department of Specialized Education

Services, University of North Carolina

Greensboro, Greensboro, NC

2

Department of Counselor Education and

Supervision, Virginia Commonwealth

University, Richmond, VA

3

Department of Interpretation and

Translation, Gallaudet University,

Washington, DC

Correspondence

Heather Coleman, 1300 Spring Garden St,

438 –New School of Education Building,

Greensboro, NC 27412, USA.

Email: hmcolem2@uncg.edu

Present addresses

Lindsay Kozachuk, Department of Counseling

and Counselor Education, Palm Beach

Atlantic University, West Palm Beach, FL;

Hollie Mason, School of Education, Western

Illinois University, Macomb, IL; and

Kari Alberque, Psychology and Social Work

Department, Meredith College, Raleigh, NC.

Abstract

Objective: We examined the perceived familial support of

parents of children with autism spectrum disorder (ASD) to

better understand the assistance and gaps they experienced.

Background: Previous literature indicated various forms of

support, including spousal, extended family members, and

siblings. However, limited research considered the support

parents experienced from their child with ASD.

Method: Using a qualitative methodology involving

semistructured interviews, the team interviewed nine par-

ents who had children with ASD.

Results: Although most extended family members were

seen as supportive, some held a lack of understanding of

ASD, posed questions, or made comments that the chil-

dren were “spoiled.”Mothers often took on the role of

“educator.”The sibling(s) helped with caregiving, but also

had their own life experiences to deal with. Regarding the

support that the child with ASD provided, parents

explained that they had grown into a better person. They

were more aware of the challenges other parents faced and

held less judgements of others.

Conclusion: Overall, parents noted differing familial sup-

port needs based on their families’understanding of ASD.

They valued the support the child with ASD provided and

recognized how they had grown as a person.

Implications: Practitioners must continue to learn how to

better understand families’experiences and recognize that

each family member has differing support roles.

KEYWORDS

autism, family narratives, family relationships, parenting & parenthood

Received: 28 January 2022Revised: 18 October 2022Accepted: 1 January 2023

DOI: 10.1111/fare.12842

This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits

use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or

adaptations are made.

© 2023 The Authors. Family Relations published by Wiley Periodicals LLC on behalf of National Council on Family Relations.

2908 Family Relations. 2023;72:2908–2926.

wileyonlinelibrary.com/journal/fare

Parents of children with autism spectrum disorder (ASD) experience unique challenges not often faced

by those without a child with ASD. For example, this group of parents are more likely to experience

divorce (Hartley et al., 2010), financial distress, and social isolation (Nicholas et al., 2016). Yet, family-

based support is associated with various positive outcomes that may mediate some of these challenges.

Parents of children with ASD who feel supported by their family are less likely to be clinically distressed

and report higher levels of resilience (McKee et al., 2020). Although there is a growing body of literature

concerning the role of family support, there are still many gaps in the literature. One such gap is the

nature of how parents perceive family-based support, the focus of the findings in this study.

Family and family-based support defined

There are several different ways to describe “family.”Some families are single parented, some

parents adhere to the roles of father and mother, whereas some involve adoption or are

impacted by divorce. Further, there are lesbian/gay/bisexual/trans/queer families and families

that exist in different cultural frameworks. Because of the reported experiences of the included

participants in this study, we were only able to focus on a section of the spectrum of families.

This study focuses on the experiences of families who are biologically or legally related and

who described typical gender roles of mother or father.

Several different forms of support exist for families including social, formal–professional, and

academic. However, research is beginning to identify family-based supports, orfamilial support,

as crucial for the positive adjustment of parents in families that include a child with ASD (McKee

et al., 2020). Family-based support includes familial coping skills, marital health, and respect and

care among family members (McKee et al.,2020). Although other disciplines may define family-

based support as interventions provided by external professionals, we adopt the construct of

family-based support as defined in a treatment planning tool created by Daire et al. (2014)and

further validated with parents of youth with ASD (McKee et al., 2020). Daire et al. (2014) devel-

oped the Family Adjustment Measure (FAM), an instrument that examines areas of stress and

coping that influence adjustment in parents whose family includes a child with a disability. Based

on both exploratoryand confirmatory factor analyses, they identified 30 items that loaded suffi-

ciently on four different subscales of the FAM. Family-based support was identified as one of the

four areas of parental adjustment in parents of children with disabilities, along with parental dis-

tress, social support, and positive coping skills. The family-based support subscale has seven items

that ask parents to report on a 5-point Likert scale with answers ranging from never to almost

always. The subscale asks about the parent’s perception of support from their spouse/partner/sig-

nificant other or “family.”Some examples include, “There is loyalty in our family,”and “We deal

with stress as a family”(Daire et al., 2014,p.97).

Throughout this manuscript, we will examine family-based support in alignment with the

Daire et al. (2014) FAM definition, that is, how family members support the parent(s) of chil-

dren with ASD. Through the literature review and our study, we explore which family members

are perceived as supportive by parents of children with ASD and their role.

Spousal support

The limited research exploring spousal relationships, both current and divorced, does suggest

that mothers describe their spouse as their central source of support (Pepperell et al., 2018). Par-

ents of children with ASD described their role as a caregiver as a full-time job without desig-

nated work hours (Nicholas et al., 2016). Caregivers also recognize that parents with better

relationships with their spouse report a higher quality of life (Derguy et al., 2018). However,

whereas the father is seen as a great source of support, the mother has been given or assumes

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