Transforming Transitions: Developing Cultural Competence in Supporting Caregivers of Children and Youth Growing up with Autism Spectrum Disorder

ABSTRACT

BACKGROUND: Transition to adulthood is a stressful time for caregivers of children and youth with Autism Spectrum Disorder (ASD). Anecdotally, we know that cultural perspectives can directly influence decisions made around ASD diagnosis, treatment, and transition to adulthood. However, there is a paucity of research into these cultural perspectives and how they may affect illness trajectories. OBJECTIVE(S) 1.Through open-ended responses, identify cultural values that play a role in decision making around health care and life course planning during transition to adulthood in ASD. 2.Identify criteria for success in adulthood from parents of children and youth with ASD in a culturally diverse population. 3.Identify systemic barriers that prevent families from accessing culturally sensitive care 4.Educate health care workers on any unique cultural perspective that may impact transition planning. DESIGN/METHODS: In-depth interviews (IDIs) were conducted with caregivers (i.e., parents/guardians) of children and youth with autism. Interviews were recorded, transcribed, and coded using deductive and inductive coding methods by two independent coders, with inter-rater reliability confirmed by Cohen's kappa coefficient. RESULT(S) A total of 12 IDIs were conducted. The main themes that were discussed included caregivers' understanding of adulthood for their child with ASD, barriers to accessing services, the importance of culture and religion/spirituality to their child's future, recommendations to improve current services and programming and the impact of the COVID-19 pandemic on decision-making. Caregivers expressed their desire for their child to be independent as they transition to adulthood. They also described how cultural or religious/spiritual practices are integrated into their child's life and the importance of maintaining their cultural identity. Caregivers emphasized the lack of culturally tailored resources as their child transitions to adulthood to maintain that sense of community. CONCLUSION(S) Caregivers' cultural perspectives are an integral part of their identity and an important aspect of their environment that should be taken into consideration as children and youth with ASD transition to adulthood.