A local autism health centre, in Toronto – South Asian Autism Awareness Centre (SAAAC) and Ninety9Thirty Creative Consulting, in partnership with the Tamil Health Association launched Project InForm. This was an autism awareness campaign for newcomers and recent immigrants to help them gain a basic understanding of early screening and diagnosis for autism amongst the South Asian community.
- Approximately 1 in 77 children in Southern Ontario is diagnosed with Autism Spectrum Disorder (1).
- Early diagnosis and intervention are essential for optimal long-term outcomes and are the best course of action to prevent poor functional ability, quality of life, social isolation, and financial vulnerability for both the child and caregiver(s).
- Marginalized racialized groups often experience additional barriers to early diagnosis and intervention, however this issue has not been sufficiently explored and summarized in literature.
- The purpose of this study is to examine the strengths and limitations of current practices related to autism awareness, screening, and diagnosis in minority communities, specifically within the South Asian Community.
- Lack of knowledge in minority communities
- Example: Latino parents felt they lack autism awareness because autism is a condition that “does not exist” in Mexican communities as it is not labeled as a medical condition (Zuckerman, Sinche, Mejia, Cobian, Becker, & Nicolaidis, 2013).
- Autism is a stigmatized condition in certain cultures
- Example: Some Latino fathers feel a child with autism is a poor reflection on him, leading to shame and embarrassment and decreased likelihood of disclosing child’s condition (Zuckerman, Sinche, Mejia, Cobian, Becker, & Nicolaidis, 2013).
Service provider competency
- Service providers favour Western medical practices and culture
- Example: Parents indicated health professionals told them to speak in English, limit interaction with relatives and avoid community events, to “keep the child’s life simple.” This is in contrast to most families’ cultural norms (Jegatheesana, Fowler & Miller, 2010)
- Organizations that provide autism services lack culturally informed services.
- Example: The EarlyBird program, an intervention program for parents, found significant decreased participation from Maori, Pasifika and Asian families due to language and social customs barriers (Birkin, Anderson, Seymour & Moore, 2008).
- Literature is exploring and/or addressing cultural issues related to Autism Spectrum Disorder
- However, in practice agencies are lagging behind and are not providing sufficient programs to address cultural issues related in Autism Spectrum Disorder
- More diverse cultural-sensitive approaches are needed
- It is also unclear if parents and caregivers are aware of current resources and how to access them
- Next steps include interviewing caregivers and health care providers, to develop and validate culturally appropriate health promotion campaigns and tools to ensure ASD children receive appropriate and timely services in South Asian communities.