from ACT’s 12th Annual Focus on Research

Filmed April 15th, 2016

As professionals working in culturally diverse communities in Metro Vancouver, it is important to consider how we can best deliver culturally-sensitive services to the many families for whom English is not their first language. In an effort to address the need for culturally responsive services, a group of Metro Vancouver professionals have created a workgroup within the International Dissemination committee of the Association for Positive Behavior Support. Over the past year, the group has been working to develop a series of parent training workshops. The goal is to improve the quality of lives for families and their children by empowering families to use PBS strategies in their daily lives in ways that are effective as well as meaningful and acceptable culturally.  This presentation will describe a summary of the workgroup’s progress to date and next steps.

Parbs Bains, M.Ed., BCBA

Parbs Bains has 14 years of experience supporting the needs of children with autism and other developmental disabilities in the public school system and in private practice. Parbs is a Board Certified Behavior Analyst and holds a Master of Education in Special Education from the University of British Columbia.

Noreen Dunn, M.Ed., BCBA

Noreen Dunn has been supporting children with Autism Spectrum Disorder and other developmental in home, school, and community settings for the past 11 years. Noreen is a Board Certified Behavior Analyst and holds a Master of Education in Special Education from the University of British Columbia.

 

Part 1: The Need for Multi-Lingual & Culturally Responsive Service Providers

Part 2: Common Barriers for Culturally Diverse Families

Part 3: Culturally Sensitive Considerations and Supports

• Cultural Assessment Tool: See page 21 of ACT’s Autism Manual for BC,  Chapter 13 – Guide to Working with South Asian Families Affected by Autism

ACT Resources

• Search the Autism Information Database (AID),
• ACT in Chinese
• ACT in Punjabi
• Next Steps Guide (English, Korean, Punjabi and Chinese)

Reference: Chen, D., Downing, J. E., & Peckham-Hardin, K. D. (2002). Positive behavior support with families of diverse cultural and linguistic backgrounds: Considerations for culturally responsive practices. In J. M. Lucyshyn, G. Dunlap, & R. W. Albin (Eds.), Families positive behavior support: Addressing problem behavior in family context (pp. 131- 151). Baltimore, MD: Paul H. Brookes. Singh, N. N., Lancioni, G. E., Winton, A. S. W., Karazsia

Part 4: Positive Behavioural Support Workgroup

Part 5: Pilot Workshop Plan & Outline

Part 6: Workshop Structure: Mindfulness-Based PBS & Behaviour Skills Training

Reference: Singh, N. N., Lancioni, G. E., Winton, A. S. W., Karazsia, B. T., Myers, R. E., Lathan, L. L., & Singh, J. (2014). Mindfulness-Based Positive Behavior Support (MBPBS) for Mothers of Adolescents with Autism Spectrum Disorder: Effects on Adolescents’ Behavior and Parental Stress. Mindfulness, 5, 646-657.

from ACT’s 12th Annual Focus on Research

Filmed April 15th, 2016

Abstract

Drs. Iarocci and Gardiner present findings from a mixed-methods study with caregivers of individuals with ASD in British Columbia.  Participants reported on their satisfaction with available funds and resources.  This research revealed important insights into the strengths and challenges associated with the BC funding model, as perceived by service users.  The conclusions are, however, limited by the lack of diversity represented within the sample.  It is critical that methods of engaging families who live outside of major centres, and who represent diverse ethnic and cultural backgrounds are developed.  Such approaches acknowledge the rich diversity represented within the province, and ensure that evidence-based recommendations have value for all families of children with ASD.  The video concludes with a discussion on the implications for provincial policy and practice, and present strategies for including under-served families in research.

Download copy of slides

Presenter Bios

Grace Iarocci, PhD, R.Psych

Grace Iarocci, PhD., R. Psych. is a Professor of Psychology at Simon Fraser University, and Director of the Autism and Developmental Disorders Lab.  She is a Michael Smith Foundation for Health Research Scholar, and an Autism Research Training Program mentor.

 

 

Emily Gardiner, PhD, BCCH

Emily Gardiner, PhD is a postdoctoral fellow with the Department of Pediatrics at the University of British Columbia.  She is conducting her current research out of the Child and Family Research Institute within The M.I.N.D. Research Theme.

 

Part 1: Introduction and Literature Review

Part 2: ASD and Service Delivery

Part 3: Survey and Interview Results

Part 4: Research Discussion and Policy Implications

Part 5: Study Limitations and Hard-to-Reach Populations

 

from ACT’s 12th Annual Focus on Research

Filmed April 16th, 2016

Abstract

Many bilingual families are told by professionals to speak only one language (in Canada, either English or French) to their child with autism spectrum disorder (ASD).  The rationale for this recommendation is that the linguistic input to which these children are exposed should be as simplistic as possible in order to facilitate language learning, given the social-communicative challenges inherent in ASD. Until recently, few studies had compared language development in monolingual vs. bilingual children with ASD to determine if exposure to more than one language is, in fact, problematic. This presentation will summarize the research in this area, much of which was conducted in Canada, with recommendations for bilingual parents and for professionals who support them.

Presenter: Pat Mirenda, PhD, BCBA

Pat Mirenda is a Professor and Director of the Centre for Interdisciplinary Research and Collaboration in Autism at the University of British Columbia. She has published numerous research articles and presents frequently at international and national conferences. Her research examines the developmental trajectories of children with autism and their families.

 

 

Part 1: Introduction and Parents’ Experiences

• Kay-Raining Bird et al., (2012) Survey of bilingualism in autism spectrum disorders
• Jegatheesan, B., (2011) Multilingual Development in Children with Autism: Perspectives of South Asian Muslim Immigrant Parents on Raising a Child with a Communicative Disorder in Multilingual Contexts
• Fernandez y Garcia, E., Breslau, J., Hansen, R., & Miller, E., (2012) Unintended consequences: An ethnographic narrative case series exploring language recommendations for bilingual families of children with autistic spectrum disorders
• Yu, B., (2013) Issues in Bilingualism and Heritage Language Maintenance: Perspectives of Minority-Language Mothers of Children With Autism Spectrum Disorders

Part 2: Review of the Research on ASD and Bilingualism

• Website for Pathways Study in ASD http://www.asdpathways.ca/
• Seung, H., Siddiqi, S., & Elder, J.H., (2006) Intervention outcomes of a bilingual child with autism
• Hambly & Fombonne (2012) The impact of bilingual environments on language development in children with autism spectrum disorders.
• Petersen, Marinova-Todd, Mirenda (2012) Brief Report: An Exploratory Study of Lexical Skills in Bilingual Children with Autism Spectrum Disorder
• Ohashi, Mirenda, et al., 2012 Comparing early language development in monolingual- and bilingual- exposed young children with autism spectrum disorders
• Valicenti-McDermott et al., (2013) Language differences between monolingual English and bilingual English-Spanish young children with autism spectrum disorders
• Hambly & Fombonne (2014) Factors influencing bilingual expressive vocabulary size in children with autism spectrum disorders
• Reetzke, Zou, Sheng, & Katsos (2015) Communicative Development in Bilingually Exposed Chinese Children With Autism Spectrum Disorders
• Howse, (2016) Verbal outcomes at school entry of monolingual and bilingual children with ASD who were minimally verbal at the time of diagnosis

Part 3: School-Age Children and Language

• Lam, T., (2015) Pragmatic skills of bilingual and monolingual children with autism spectrum disorder
• Macaro, S., (2015) A comparative study of executive functioning behaviours in bilingual and monolingual children with autism spectrum disorder

Part 4: Q&A

from ACT’s 12th Annual Focus on Research

Filmed April 15th, 2016

Abstract

The empowerment of caregivers is increasingly recognized as a critical component of intervention for children with autism. The World Health Organization recommends parent skills training (PST) for management of developmental disorders. However, to date, no such programs have been widely available, especially for use in low-resource communities. Our team is currently undertaking a local adaptation and evaluation of this new evidence-based, affordable, PST program that can be delivered by non-specialist providers in a wide range of community settings. We also interlink our local evaluation with field trials in low- and middle-income countries, in support of global research in intervention design and delivery.

Presented by: Mayada Elsabbagh, PhD, McGill University

Mayada Elsabbagh, Ph.D. is Assistant Professor in Psychiatry at McGill University. Her research focuses on understanding the root causes of autism and tracing its developmental pathways. The approach integrates innovative research with the mission of accelerating translation of scientific discoveries into community impact. Mayada’s recent contributions include the identification of very early brain function markers for autism prior to the onset of behavioral symptoms. She also supported the successful launch of collaborative research and translational networks, aimed at accelerating the pace of discovery in early autism. She has contributed to mapping knowledge translation priorities in under-resourced communities. In 2010, she was awarded the Neville Butler Memorial Prize, in recognition of the public value and social relevance of her research. In 2013, she was the recipient of the British Psychological Society Neil O’Conner Prize, awarded for her work in early autism biomarkers.

Link to online presentation file

Part 1: Introduction: A Global Vision for Autism

• The weirdest people in the world?, Joseph Henrich (2010)
• Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide. Durkin, Maureen S. et al. (2015) 
• Autism and the Grand Challenges in Global Mental Health. Editorial. Autism Research (2012)
• “Communities” in Community Engagement: Lessons Learned from Autism Research in South Africa and South Korea. Grinker, Roy Richard et al. (2012)
• Perspectives from the Common Ground Editorial. Autism Research (2012)
• Autism Spectrum Disorders and other Developmental Disorders Report (World Health Organization)

Part 2: Spectrum of Care and Genetic Diversity

• Spectrum Autism Research News 
• A Fresh take on autism’s diversity (Spectrum News)

Part 3: Hot Topic: Building ‘Glocal’ Capacity

• Parent-mediated intervention versus no intervention for infants at high risk of autism: a parallel, single-blind, randomised trial Green, Jonathan et al., (2015)
• Effectiveness of the parent-mediated intervention for children with autism spectrum disorder in south Asia in India and Pakistan (PASS): a randomised controlled trial Rahman, Atif et al, (2016) 

Part 4: Family Navigator Pilot

• Service utilization in a sample of preschool children with autism spectrum disorder: A Canadian snapshot. Volden, J et al. (2015)
• Presentation: Disparities in Utilization of Services Around the Time of Autism Spectrum Disorder Diagnosis. Savion-Lemieux, T., et al. (2014)
• Autism Family Navigator website

Part 5: Hot Topic: Good Outcomes

• Pathways in Autism website

Part 6: Q&A