Social Participation Experiences of Families Raising a Young Child With Autism Spectrum Disorder: Implications for Mental Health and Well-Being

Julie Smith¹, Nicole Halliwell², Amy Laurent³, Jessica Tsotsoros⁴, Katelyn Harris⁵, Beth DeGrace⁶

Affiliations

¹ Julie Smith, DSc, OTR/L, is Early Intervention Lead, Oklahoma County, Family Health Services, Oklahoma State Department of Health, Oklahoma City, OK. At the time of the study, Smith was Doctoral Student, Rehabilitation Sciences Program, College of Allied Health, University of Oklahoma Health Sciences Center, Oklahoma City.
² Nicole Halliwell, DSc. OTR/L, is Assistant Professor, Occupational Therapy Department, Marjorie K. Unterberg School of Nursing and Health Sciences, Monmouth University, West Long Branch, NJ. At the time of the study, Halliwell was Doctoral Student, Rehabilitation Sciences Program, College of Allied Health, University of Oklahoma Health Sciences Center, Oklahoma City; n.halliwell.dsc.otr@gmail.com.
³ Amy Laurent, PhD, OTR/L, is Codirector, Autism Level UP!, North Kingstown, RI. At the time of the study, Laurent was Adjunct Faculty, Department of Psychology, University of Rhode Island, Kingston.
⁴ Jessica Tsotsoros, PhD, OTR/L, is Associate Professor and International Experience Coordinator, Department of Rehabilitation Sciences, College of Allied Health, University of Oklahoma Health Sciences Center, Tulsa.
⁵ Katelyn Harris, OTR/L, is Occupational Therapist, Intervention Center for Early Childhood, Irvine, CA.
⁶ Beth DeGrace, PhD, OTR/L, FAOTA, is Director of Kids Ministry, Crossings Community Church, Oklahoma City, OK. At the time of the study, DeGrace was Associate Professor, Department of Rehabilitation Sciences, College of Allied Health, University of Oklahoma Health Sciences Center, Oklahoma City.

PMID: 37083974
PMCID: PMC10137595
DOI: 10.5014/ajot.2023.050156

Social Participation Experiences of Families Raising a Young Child With Autism Spectrum Disorder: Implications for Mental Health and Well-Being

Julie Smith et al. Am J Occup Ther. 2023.

. 2023 Mar 1;77(2):7702185090.

doi: 10.5014/ajot.2023.050156.

Authors

Julie Smith¹, Nicole Halliwell², Amy Laurent³, Jessica Tsotsoros⁴, Katelyn Harris⁵, Beth DeGrace⁶

Affiliations

¹ Julie Smith, DSc, OTR/L, is Early Intervention Lead, Oklahoma County, Family Health Services, Oklahoma State Department of Health, Oklahoma City, OK. At the time of the study, Smith was Doctoral Student, Rehabilitation Sciences Program, College of Allied Health, University of Oklahoma Health Sciences Center, Oklahoma City.
² Nicole Halliwell, DSc. OTR/L, is Assistant Professor, Occupational Therapy Department, Marjorie K. Unterberg School of Nursing and Health Sciences, Monmouth University, West Long Branch, NJ. At the time of the study, Halliwell was Doctoral Student, Rehabilitation Sciences Program, College of Allied Health, University of Oklahoma Health Sciences Center, Oklahoma City; n.halliwell.dsc.otr@gmail.com.
³ Amy Laurent, PhD, OTR/L, is Codirector, Autism Level UP!, North Kingstown, RI. At the time of the study, Laurent was Adjunct Faculty, Department of Psychology, University of Rhode Island, Kingston.
⁴ Jessica Tsotsoros, PhD, OTR/L, is Associate Professor and International Experience Coordinator, Department of Rehabilitation Sciences, College of Allied Health, University of Oklahoma Health Sciences Center, Tulsa.
⁵ Katelyn Harris, OTR/L, is Occupational Therapist, Intervention Center for Early Childhood, Irvine, CA.
⁶ Beth DeGrace, PhD, OTR/L, FAOTA, is Director of Kids Ministry, Crossings Community Church, Oklahoma City, OK. At the time of the study, DeGrace was Associate Professor, Department of Rehabilitation Sciences, College of Allied Health, University of Oklahoma Health Sciences Center, Oklahoma City.

PMID: 37083974
PMCID: PMC10137595
DOI: 10.5014/ajot.2023.050156

Abstract

Importance: Social participation (SP) is an important facilitator of positive mental health for children and families. Children are dependent on their families to mediate SP, yet families of children with autism spectrum disorder (C-ASD) seemingly limit SP because of behavioral and functional challenges in community environments. The resulting isolation can affect the child's and the family's mental health.

Objective: To distill the essence of everyday SP experiences in the community of families raising C-ASD.

Design: Data collected via in-depth, semistructured interviews with a purposive sample and analyzed in the phenomenological tradition.

Setting: Community.

Participants: We recruited seven families with English-speaking parents (ages 18-64 yr) raising one C-ASD (age 2-8 yr). Families with more than one C-ASD or those whose C-ASD was diagnosed with complex medical condition or a neurological or genetic disorder were excluded.

Results: The essence of experiences of SP emerged in the form of three themes depicting the mismatch between societal expectations for SP and families' experience: (1) "the struggle," (2) "it's hard to feel like you belong," and (3) what we "have to do."

Conclusions and relevance: As a collective, families expressed desire for everyday community SP and could do so only in select environments with core groups. The findings, as interpreted through the lens of mental health promotion, reveal opportunities to reduce barriers and to promote meaningful family SP so as to facilitate positive mental health and well-being through the transactional intersecting characteristics of the child with ASD, the family, and the community. What This Article Adds: This study illuminates the experience of SP of families raising a young C-ASD, highlighting both supports and barriers. Practitioners can use this information to potentially prevent isolation and promote both child and family mental health and well-being.

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References

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Social Participation Experiences of Families Raising a Young Child With Autism Spectrum Disorder: Implications for Mental Health and Well-Being

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Social Participation Experiences of Families Raising a Young Child With Autism Spectrum Disorder: Implications for Mental Health and Well-Being

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