Experiences of families of people with Autism Spectrum Disorder in the Canterbury/West Coast area
Thesis DisciplineHuman Services
Degree GrantorUniversity of Canterbury
Degree NameMaster of Arts
Many people would argue that New Zealand has had a poor reputation for providing support services for the families of people with an Autistic Spectrum Disorder (ASD). The limited support services available for families in this country were highlighted during the trial and the manslaughter conviction of Janine Albury-Thomson. Albury-Thomson was found guilty of the manslaughter of her autistic daughter, Casey (MOH, 1999). The sentencing judge called for an independent inquiry to be held to examine the extent of support services that were available for families affected by the disorder with a view to identifying any gaps that may exist and ascertaining whether or not government policy could be blamed (Norris, 1998). More than twelve years have now elapsed since the Albury-Thomson trial and research was needed to ascertain the experiences of families raising a child with ASD.
This research examines the experiences of families who have a child who has an ASD diagnosis. Research participants were families of people with Autism Spectrum Disorder who reside in the Canterbury/West Coast area. The research explored the support needs of families and the informal and formal supports that are available to them in this region.
This research was conducted in three parts, with each part having a distinct method of data collection allowing triangulation of research findings. Part one was a survey questionnaire distributed via a range of mediums using a snowball sampling method. The second data set was made up of two case studies that were undertaken with a semi-structured interview approach. The third set of data was elicited via a semi-structured interview process from five local service providers that provide services to those with ASD and their families. A qualitative methodology was adopted to analyse research findings. This methodological approach was selected because it gave participants the opportunity to tell their stories about the diagnostic pathway they travelled and their experiences using available services.
This research has social policy relevance as it was designed to examine the participant’s experiences while using services and resources available for the families of people with ASD in the Canterbury/West Coast area. Participants told of various social, emotional, and practical impacts and of the experiences they encountered while using the various services available. While the level of awareness of ASD has increased, the diagnosis process proved to be problematic for some when using the public health system. Consistent with a 2001 study commissioned on behalf of the Autistic Association of New Zealand, participants in this study who sought a diagnosis through the public health system found it to be a protracted process. Participants attributed delays to a lack of resources or staff that had a limited knowledge of ASD and saw these factors as barriers to obtaining a diagnosis within an acceptable time frame. A more timely diagnosis was reportedly received when the private health system was used.
With regards to support offered by the agencies involved with ‘day to day’ contact with families it was found that overall, competent, experienced people worked for the existing agencies and they were capable of offering support where needed. However specific issues were identified by participants including a perception that case managers failed to understand their situation because they were unfamiliar with the implications of having a family member with ASD. Significantly, family members and service providers both identified a concern about a lack of suitable accommodation that can be utilised by a person with ASD. Because there is limited research into the support needs of families of a child with ASD this research provides an important insight into the needs of a fairly marginalised, and sometimes socially isolated, group. Implications for ongoing service provision and support of families are discussed in the thesis.