As Canadian cities become increasingly culturally diverse, one size does not always fit all when it comes to supporting healthy child development. Health care systems and providers need to respond to varied perspectives, values, and behaviors connected to health and well-being. Failure to understand and manage social and cultural differences may have significant health consequences for minority groups in particular.
SAAAC’s inaugural conference Culture Counts - Culturally Responsive Autism Support in Research and Practices will engage with the timely issue of autism and demonstrate how to provide effective ASD support to a rapidly changing population.
The event will provide you with a space to connect with families, researchers, health professionals, advocates and community agencies to better understand ASD as it relates to minority communities and the challenges faced by underserved communities.
Instructor and Family Faculty, UMass Medical School-Eunice Kennedy Shriver Center
Elaine Gabovitch, parent of a young adult son with autism, was advised to “wait and see” back in 1997 when she questioned her son’s developmental delays at the age of two. After hearing the same from other parents, she decided that public awareness was the answer and has worked ever since to promote early identification and health equity. Ms. Gabovitch is currently the Director of the Division for Children & Youth for Special Health Needs at the Massachusetts Department of Public Health. Prior to her work at DPH- from 2005 until late 2016- she served as Family Faculty at the UMass Medical School-Eunice Kennedy Shriver Center’s Leadership Education in Neurodevelopmental Disabilities Program (LEND) and University Center for Excellence in Developmental Disabilities (UCEDD) and as an Instructor in the UMass Medical School Department of Family Medicine & Community Health. She continues to serve in these roles as adjunct faculty. From 2011-2016, she was the CDC’s Act Early Ambassador to Massachusetts and the Massachusetts Act Early State Team Leader.
Children with autism spectrum disorder (ASD) and other developmental disorders (DD) from diverse cultural and linguistic backgrounds are significantly less likely to be identified for evaluation and services and are also diagnosed at later ages than children from English-speaking families. The reason for this may be that concepts of screening, early identification and early intervention may be unfamiliar for families from diverse backgrounds. For many families, these concepts are culturally bound and they may perceive that their children will be stigmatized in their communities by participating in these practices. Recognizing the need for health equity in early identification of children with ASD/DDs from culturally diverse backgrounds, Elaine Gabovitch has led the development of the Considering Culture in Autism Screening Kit and Curriculum for pediatric and early childhood professionals and the 1, 2, 3…Grow! cable television series for parents of young children, which is available in seven languages. This presentation will share lessons learned from these projects, using video interviews of parents of children with ASD across cultures to illustrate some of the key issues.
Clinical Team Investigator, Developmental Pediatrician Assistant Professor, Department of Pediatrics, University of Toronto
Dr. Mohammad Zubairi is a Developmental Pediatrician at Holland Bloorview and SickKids. He is also a Clinical Team Investigator with the Bloorview Research Institute, and Assistant Professor, Department of Pediatrics, University of Toronto. His primary area of clinical work is with children with autism. and psychopharmacology. He completed his Master of Education at the Ontario Institute for Studies in Education with a research focus on how clinicians engage in cultural encounters, and how we can best teach about and learn from such encounters. He is also interested in studying how clinicians reflect on their day-to- day practices, and how simulations can be used to support such reflection in the context of health profession education. He sits on the steering committee for PONDA (Physicians of Ontario Neurodevelopmental Advocacy) Network, and on the executive for the Section on Developmental Paediatrics at the Canadian Paediatric Society. He is a board member with the South Asian Autism Awareness Centre (SAAAC).
There are an increasing number of clinical encounters with patients from diverse groups who may have cultures different from those of the healthcare professional working in a specific setting. In this presentation, Dr. Zubairi will share reflections on how we can meaningfully engage with patients and their caregivers/families who have diverse backgrounds, beliefs/values, experiences, and (hi)stories.
Founder and Co-Director at McMaster Autism Research Team (MacART) Assistant Professor, Department of Psychiatry and Behavioural Neurosciences, McMaster University
Dr. Stelios Georgiades is an Assistant Professor in the Department of Psychiatry and Behavioural Neurosciences at McMaster University. He is Founder and Co-Director of the McMaster Autism Research Team (MacART), Co-Founder of the Child Health Specialization in the Bachelor of Health Sciences (BHSc.) Program, and a Core Scientist at the Offord Centre for Child Studies. Dr. Georgiades’ research investigates the heterogeneity in diagnostic profiles and developmental trajectories in autism. Within an integrated model of research and practice, Dr. Georgiades’ work aims to inform the development of more precise and adaptive models of care that meet the complex needs of those living with autism. Dr. Georgiades is the Principal Investigator of the Pediatric Autism Research Collaborative – PARC Project at McMaster Children’s Hospital, the McMaster co-lead for the national Pathways in ASD study, and a Co-Principal Investigator for the Province of Ontario Neurodevelopmental Disorders – POND Network. Dr. Georgiades has served as an Expert Scientist appointed by the Federal Minister of Health on the Working Group for the Canadian Autism Partnership and sits on the ASD Clinical Expert Committee of the Ontario Ministry of Children and Youth Services.
Dr. Georgiades will discuss his team’s research on the developmental trajectories of children with ASD. He will introduce the concept of ‘chronogeneity’ – heterogeneity in relation to the concept of time – and discuss how this concept can facilitate communication and inquiry among researchers studying the longitudinal course of autism and other neurodevelopmental disorders. He will also explore how socio- contextual factors are associated with diverse trajectories. Dr. Georgiades will then discuss how interdisciplinary collaborations that integrate research, clinical practice, and policy may move us closer to more precise and adaptive models of care for the children, youth, and families living with autism.
Research Scientist, Montreal Children's Hospital and Douglas University Mental Health Institute
Mayada Elsabbagh, Ph.D. is Assistant Professor in Psychiatry at McGill University. Her research, in the area of early infancy and developmental disorders, is focused on understanding the brain basis of behavioural genetic disorders. Prior to returning to Canada from the UK in 2011, Mayada supported the successful launch of collaborative research networks in autism including BASIS and ESSEA, aimed at accelerating the pace of discovery in early autism. Mayada is active in the area of knowledge translation locally and internationally. She currently manages the Knowledge Translation portfolio for NeuroDevNet, a Canadian national Network of Center’s of Excellence. She was the recipient of the 2010 UK Economic and Social Research Council Neville Butler Memorial Prize for Longitudinal Research awarded in recognition of the public value and social relevance of her research.
Autism affects over 50 million children worldwide. Research into the condition is increasingly international, presenting opportunities and challenges towards a tangible impact, locally and globally. Dr. Elsabbagh will discuss key global themes including the need to understand the underlying biology, diversity and variable impact across those affected, and the critical role of supportive families and communities. Development of innovative models for research and services which consider diverse communities will be beneficial to our own society and the rest of the world.
Founder, Four Directions Autism
Ken Robertson is a Secwepemc from the Neskonlith Indian Band located in the south-central part of British Columbia’s Rocky Mountains. Raised in East Vancouver -“Canada’s poorest postal code”- in a way similar to many First Nations peoples, he had challenges accessing services on the reserve. Ken moved to Toronto in his youth and held positions at the Tumivut Youth Shelter, and later the Native Canadian Centre of Toronto. Shortly after the diagnosis of autism of two of his children, Ken began advocating for autism parents when he ran in the 2014 municipal election for Toronto District School Board Trustee, placing second. He is a current Board Member of Autism Ontario and successfully launched a House of Commons E-petition advocating for services for First Nations families off-reserve. His continued goal is advocating for all autism parents, and addressing the challenges each family faces.
My motivation is to discuss the challenges of First Nations children on reserves and the limited access services faced by all Canadians but especially focusing on the systemic barriers that First Nations peoples face. The premise of my speech is to reaffirm that we are all in this together and that we work together for a common goal. My motivation came after the second diagnosis of autism in my family with my daughter. As a father of four, my approach began with an awareness campaign during the 2014 municipal election for Toronto District School Board Trustee. The success of placing second pushed me to continue working towards my goal of advocacy. I decided to first create Four Directions Autism to focus on the need for the Urban First Nations community and then later speaking with various Members of Parliament including Gary Anandasangaree and my MP Julie Dzerowicz, I decided to do something more. With the support of my family, we painstakingly reached out to as many people as possible to reach the minimum 500 signatures we needed for a response. The government responded and now provincial and federal partners are working toward a clear goal to aid parents. However, more needs to be done as children with autism eventually become adults with autism.