Shouldering the burden: Intensive mothering and autism

• Published date: 01 April 2024
• Author: Jacob W. Dembosky,D. Alex Heckert,Susan Boser,Joann M. Migyanka
• Date: 01 April 2024
• DOI: http://doi.org/10.1111/fare.12943

RESEARCH

Shouldering the burden: Intensive mothering

and autism

Jacob W. Dembosky

1

| D. Alex Heckert

2

| Susan Boser

2

|

Joann M. Migyanka

3

1

RAND Corporation, Pittsburgh, PA

2

Department of Sociology, Indiana University

of Pennsylvania, Indiana, PA

3

Professor of Communication Disorders,

Special Education, and Disability Services

(Retired), Indiana University of Pennsylvania,

Indiana, PA

Correspondence

Jacob W. Dembosky, RAND Corporation,

4570 Fifth Avenue, Suite 600, Pittsburgh, PA

15213, USA.

Email: dembosky@rand.org

Abstract

Objective: The objective of this study was to identify the

degree to which intensive mothering ideology corresponds

to the perspectives and roles of mothers of young adults

with autism.

Background: Previous research suggests that intensive

mothering ideology shapes the perspectives and roles of

mothers in general. However, few studies have examined

how the ideology specifically relates to mothers of young

adults with autism. Research is needed to understand the

roles that mothers of young adults with autism assume

within the context of intensive mothering.

Method: In-depth interviews were conducted with a pur-

poseful sample of 19 mothers of adult children with

autism. Interview data were analyzed using a constructivist

grounded theory approach.

Results: Mothers devoted much time and effort to caring

for or otherwise assisting their adult children with autism,

assuming the roles of protector, advocate, and case man-

ager. Mothers struggled to live up to the expectations of

intensive mothering but, simultaneously, resented the

degree to which they had to advocate and manage services

for their adult children.

Conclusion: Mothers may feel added pressure to meet the

needs of adult children with autism. Many are susceptible

to self-blame and internalizing others’negative judgments

of their parenting abilities, but some view themselves as

good mothers based on the challenges they have

overcome.

Implications: Service providers can adopt a family-based

approach to services for adults with autism and their fami-

lies. Policymakers could explore opportunities to make the

adult service system more attentive to the needs of

caregivers.

Received: 13 April 2022 Revised: 16 April 2023 Accepted: 29 May 2023

DOI: 10.1111/fare.12943

© 2023 National Council on Family Relations.

Family Relations. 2024;73:807–825. wileyonlinelibrary.com/journal/fare 807

KEYWORDS

autism, intensive mothering, mothers, qualitative research, young adults

Researchers have documented the substantial amount of time and effort that parents put into

caring and advocating for their children with autism, as well as the effects that this has on their

quality of life. Studies indicate that parents of children with autism tend to experience greater

levels of stress and anxiety than parents of neurotypical children (Giovagnoli et al., 2015;

Shepherd et al., 2018). These parents also tend to report experiencing higher levels of physical

and mental exhaustion and fatigue (Benderix et al., 2006; Giallo et al., 2011). Parents spend

substantial amounts of time pursuing a variety of therapies and treatments, often after having

spent considerable time obtaining a diagnosis (Singh, 2016).

Many parents—especially mothers—drop out of the workforce in order to care for a child

with autism on a full-time basis (Cidav et al., 2012; Singh, 2016). Evidence suggests that

mothers typically assume most of the responsibilities associated with caring for a child with

autism (Fairthorne et al., 2014; Gray, 2003; Nicholas et al., 2016; Nicholas et al., 2020). Yet

these mothers are still held to the same cultural standards as other mothers and are often stig-

matized and blamed when their children behave in ways that deviate from cultural norms (Lutz

et al., 2012). From the early 1950s through the 1970s, psychologists, pediatricians, and others

promoted the “refrigerator mother”theory, which held that “a cold, distant and rejecting atti-

tude on the part of mothers”caused autism (Mandy & Lai, 2016, p. 272). Although there is

more empathy for mothers of children with autism today, mother-blaming among professionals

and the general public is still common (Clarke, 2012; Lutz et al., 2012).

Much less is known about what life is like for parents whose children with autism have

transitioned to adulthood. Because many young adults with autism continue to live with

their parents (Anderson et al., 2014), their mothers may continue to put much time and

effort into caring and advocating for them. Many other mothers watch their neurotypical

young adult children leave home for a job, college, or postsecondary training, but this is

often not the case for mothers whose children have autism. Our study explores the experi-

ences of these mothers and the degree to which they hold themselves to high standards of

mothering.

Hays (1996) coined the term “intensive mothering”to describe the set of high cultural stan-

dards to which mothers in the contemporary United States are held. According to intensive

mothering ideology, mothers should put the needs and desires of their children ahead of their

own. They should “engage in child-centered, expert-guided, emotionally absorbing, labor-

intensive, and financially expensive child rearing”(Hays, 1996, p. 129).

Hays (1996) laid out three main principles of intensive mothering. First, mothers should be

the primary caregivers of their children. Within this framework, mothers possess an inherent

bond with their children and have a “natural”ability to care for them. According to intensive

mothering ideology, fathers, other family members, and paid caregivers are usually poor substi-

tutes when it comes to raising children (Hays, 1996).

Second, mothers should devote “copious amounts of time, energy, and material resources”

to child-rearing (Hays, 1996, p. 8). This means that their job entails much more than ensuring

that their children are fed, clothed, have shelter, and are kept safe. Mothers should attend to

“all the child’s needs and desires, and to every stage of the child’s emotional and intellectual

development”(Hays, 1996, p. 8). Mothers must learn as much as they can from parenting

“experts”and apply the latest knowledge about child development. They should work tirelessly

to ensure that their child is intellectually stimulated; engages in play, learning, and creative

activities; and meets developmental milestones. Mothers should also work to develop a close,

reciprocal relationship with their child.

808 FAMILY RELATIONS