On the spectrum, off the beaten path. A qualitative study of Irish parents’ experiences of raising a child with autism spectrum conditions

Abstract

Accessible summary Ten Irish parents raising a child with autism talked about their experiences. They reported that it was difficult but also how it has helped them grow. They hope that their children will be included but are scared about the challenges they will face. Abstract BackgroundRaising a child with autism spectrum conditions (ASC) presents many challenges and learning experiences for parents and other family members. There has been limited research to date on Irish parents’ experience of raising a child with ASC. The aim of this study was to describe the experience of a sample of Irish parents who have a child on the autistic spectrum. MethodA series of 1:1 semi‐structured interviews were conducted with parents in the Republic of Ireland. In total, 10 interviews were conducted. Thematic analysis was undertaken to identify themes. ResultsFive main themes were identified: (a) blame and stigma; (b) isolation; (c) being vigilant; (d) advocacy; and (e) coping with autism. ConclusionsThe findings of the study have implications for professionals who work with Irish families affected by autism. Although Ireland's movement towards social inclusion lags behind other countries, a number of the experiences faced by Irish parents are similar to that reported in other countries, suggesting a universality of ASC parenting experiences. The implications of this are discussed.

An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD)

“… 35 Also, they felt that they were blamed and criticized as “bad parents” by others who misjudged their child’s misbehavior. 36 In addition, parents in this study reported that they endured criticism or negative attitudes from others as their child did not “act normal”. This perception showed the manifestations of enacted stigmatization, which is defined as occurrences of obvious rejection, discrimination or prejudice faced by the stigmatized person.…”

Immediate Caregiving Environment of Young Children with Autism: Findings from the U.S. National Survey of Children’s Health

“…To achieve effective caregiving, parents often need to reorganize their daily lives to support their child's specific needs, by reducing work hours or even leaving the workforce to become full-time caregivers [12]. These caregiving-related stressors and burdens negatively affect parents' mental health-related well-being [13][14][15][16][17][18][19][20] and physical health [21,22]. Parents of children with ASD also face system-level challenges due to difficulties in accessing, navigating, and participating in professional services.…”

The psychological impact of quarantine on children with autism spectrum disorder

“…In addition, we recognise that although some children's internalising and externalising difficulties may have reduced, parents may still be struggling with high levels of parental accommodation in helping reduce such behaviours (Feldman et al, 2019). Similarly, the lack of social supports and isolation felt by many parents of children on the autism spectrum may be exacerbated during this unprecedented time (Byrne et al, 2018).…”