Diagnosis and Treatment Barriers Faced by South Asian Families in Canada Who Have Children Diagnosed with an Autism Spectrum Disorder

Autism Spectrum Disorders (ASDs) are characterized by significant limitations in three main areas: social relatedness, verbal and nonverbal communication, and extremely restricted behaviors and interests (American Psychiatric Association, 2000; Rutter, 1978). Research has revealed that families who have children diagnosed with an ASD encounter unique stressors and often report a diminished quality of life when compared to families who have children diagnosed with other psychological disorders (Cassidy et al., 2008; Lee, Harrington, Louie, and Newschaffer, 2008; Sivberg, 2002). Such research, however, has traditionally been conducted with Caucasian families while virtually ignoring ethnic minorities. Because South Asians make up one of the largest non-European ethnic origin groups in Canada, it is vital that research be conducted to examine cultural barriers to autism treatment and to identify unique concerns that affect the experience of this population in dealing with an ASD diagnosis. Participants in this study consisted of eight South Asian parents (seven mothers and one father) who were currently raising a child diagnosed with an ASD in British Columbia and Alberta, Canada. Some common barriers to diagnosis and treatment that were reported by parents included inadequate funding from the government, and communication problems between parents and care-providers. Some cultural barriers, specific to the South Asian community, that parents reported included lack of knowledge regarding autism in the South Asian community, South Asian cultural values in general, and feeling judged by others within the community. When asked by the interviewer how these barriers impacted their overall functioning, 75% of parents reported that they did not reveal their child’s ASD diagnosis to their friends and their own family members, including their parents and siblings. Results of the Family Needs Survey (Bailey & Simeonsson, 1988) indicated that the most imperative needs reported by the parents were needs for information, with the strongest need for information regarding services their child might receive in the future. Based on these results, it appears that South Asian caregivers of children with ASDs may experience even greater difficulty when compared to the general population of parents of children with ASD diagnoses