Abstract: Adjustment Support for Families of Children with Autism Spectrum Disorder
Searing et al. (2015) conducted a study in New Zealand about how caregivers of children with Autism Spectrum Disorder (ASD) feel about supports offered in terms of the ease of access and how helpful the supports truly are. Several families failed at finding the time to attend formal support groups, which proved to make the families more vulnerable to mental illness (Locke et al., 2010); however, the families still communicated the want for socializing. We studied the level of helpfulness and the ease of access to support for families with individuals diagnosed with Autism Spectrum Disorder. To do this, we conducted semi-structured interviews with three professionals who work with individuals diagnosed with ASD, one of them also being a parent of a child with ASD. The interview questions asked about supports and ease of access to help. Interviews were conducted via Google Hangouts, with their permission to be recorded. There were at least three researchers present. We then conducted inductive, thematic analyses in order to discern themes from our interviews. After all interviews were completed, we met online with our research supervisor to discuss prevailing messages in the interview responses. We identified the following key themes: Access to diagnosis and support are significant challenges, both initially and as the person with autism changes and develops. The first professional with whom a family/person with autism has/have access is pivotal. The professional may hinder or help in obtaining access to services and support. Bureaucratic delays (e.g., agencies, government entities, etc.) are obstacles to support for the person with autism and their families. Initial diagnosis can be delayed by hesitancy of medical and developmental professionals and/or by parents/family. Diagnosis may remove a person from eligibility for some services and support. Parents who have been through the evaluation and diagnosis processes can be especially helpful to those who are going through it. Support from others who are family and/or professionals working with someone with autism can be crucial. Notes about the nature of autism: A person with autism changes and grows and so does the nature of her or his needs. There is no one-size-fits-all template for supporting persons with autism and their families. There are significant individual differences between people with autism and their families/circumstances. Based on our interviews we concluded that ease of access to support (whether formal or informal) is vital to persons with ASD and their families.