Literature DB >> 30212758

"We were on our own": Mothers' experiences navigating the fragmented system of professional care for autism.

Alexandra Brewer1.   

Abstract

Autism is a developmental disorder that emerges in early childhood. Treatments for autism span a wide variety of professionals and paraprofessionals in the medical and educational realms. This article draws on data from a survey of 620 parents of autistic children, including 385 written narratives, to examine the experiences of mothers as they engage with this fragmented system of professional care for children with autism. Findings suggest that engagement with treatments sent families into a complex and confusing universe of diagnosis and treatment. The fragmentation of autism's professional jurisdiction between the medical and educational systems meant that mothers struggled to find comprehensive professional care that met the standards recommended by leading medical research organizations. Many mothers found it necessary to reduce their workforce participation in order to obtain and maintain their children's treatment regimes, a phenomenon that transcended social class. However, the consequences of reducing work had differential impacts on families. While married and high socioeconomic status mothers were more insulated from the potential negative effects of losing one partner's income, single and low SES mothers experienced greater precarity. These findings connect the structure and arrangement of professional jurisdictions to the experiences of parents, suggesting ways that the fragmentation of professional care for autism can have negative impacts for women, single mothers, and low SES families.
Copyright © 2018 Elsevier Ltd. All rights reserved.

Entities:  

Keywords:  Autism; Care work; Disabilities; Parenting; Professions; Qualitative methodology

Mesh:

Year:  2018        PMID: 30212758     DOI: 10.1016/j.socscimed.2018.08.039

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  9 in total

1.  Caring for children with mental health or developmental and behavioural disorders: Perspectives of family health teams on roles and barriers to care.

Authors:  Elizabeth Young; Laurie Green; Rachel Goldfarb; Kathleen Hollamby; Karen Milligan
Journal:  Can Fam Physician       Date:  2020-10       Impact factor: 3.275

2.  Social network typology and health among parents of children with developmental disabilities: Results from a national study of midlife adults.

Authors:  Robert S Dembo; Nick Huntington; Monika Mitra; Abby E Rudolph; Margie E Lachman; Marsha R Mailick
Journal:  Soc Sci Med       Date:  2021-11-30       Impact factor: 4.634

3.  Quality of Life in School-Aged Youth Referred to an Autism Specialty Clinic: A Latent Profile Analysis.

Authors:  Gazi F Azad; Emily Dillon; Julie Feuerstein; Luke Kalb; Jason Neely; Rebecca Landa
Journal:  J Autism Dev Disord       Date:  2020-04

4.  Healthcare utilization among children with early autism diagnoses, children with other developmental delays and a comparison group.

Authors:  Brittany N Hand; Judith S Miller; Whitney Guthrie; Eron Y Friedlaender
Journal:  J Comp Eff Res       Date:  2021-05-26       Impact factor: 2.040

5.  Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable.

Authors:  Suzannah Iadarola; Melanie Pellecchia; Aubyn Stahmer; Hyon Soo Lee; Lindsay Hauptman; Elizabeth McGhee Hassrick; Samantha Crabbe; Sarah Vejnoska; Elizabeth Morgan; Heather Nuske; Paul Luelmo; Chris Friedman; Connie Kasari; Amanda Gulsrud; David Mandell; Tristram Smith
Journal:  Pilot Feasibility Stud       Date:  2020-09-07

6.  Rethinking autism spectrum disorder assessment for children during COVID-19 and beyond.

Authors:  Lonnie Zwaigenbaum; Somer Bishop; Wendy L Stone; Lisa Ibanez; Alycia Halladay; Sylvie Goldman; Amy Kelly; Cheryl Klaiman; Meng-Chuan Lai; Meghan Miller; Celine Saulnier; Paige Siper; Kristin Sohl; Zachary Warren; Amy Wetherby
Journal:  Autism Res       Date:  2021-09-22       Impact factor: 5.216

7.  Adaptation and pilot implementation of the Psychosocial Assessment Tool for Autism Spectrum Disorders (PAT-ASD).

Authors:  Anne Kazak; Alejandra Perez Ramirez; Michele A Scialla; Melissa A Alderfer; Carrie Sewell-Roberts; Diane Treadwell-Deering
Journal:  J Autism Dev Disord       Date:  2022-08-24

8.  Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework.

Authors:  Rachel K Schuck; Daina M Tagavi; Kaitlynn M P Baiden; Patrick Dwyer; Zachary J Williams; Anthony Osuna; Emily F Ferguson; Maria Jimenez Muñoz; Samantha K Poyser; Joy F Johnson; Ty W Vernon
Journal:  J Autism Dev Disord       Date:  2021-10-13

9.  Cancer risk in socially marginalised women: An exploratory study.

Authors:  Sarah Hanson; Duncan Gilbert; Rebecca Landy; Grace Okoli; Cornelia Guell
Journal:  Soc Sci Med       Date:  2018-11-08       Impact factor: 4.634

  9 in total

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