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

• 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.
• 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

In this lecture, based on research in South Korea, India, South Africa, and among Korean-American and African-American communities in the United States, anthropologist Roy R. Grinker addresses three questions relevant to research on Autism Spectrum Disorder:

1) What does it mean to say that a phenomenon is “cultural?”

2) What are the cross-cultural commonalities and differences in how autism is defined and treated?

3) What kinds of cross-cultural research can have an impact on early detection and intervention?

He will also discuss science as a cultural formation that promotes and constrains scientific and popular definitions of ASD, epidemiological research on ASD, and the social movement to refigure autism as ability instead of disability. 

Dr. Roy Richard Grinker, Professor of Anthropology, International Affairs, and Human Sciences at George Washington University. Author of Unstrange Minds –Remapping the World of Autism.

Part 1.1: The Role of Culture in ASD

 Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker: http://www.actcommunity.ca/resource/151/

Part 1.2: Cultural Perspectives

Part 1.3: Autism as Cultural Construct 

• A History of Autism: Conversations with Pioneers.  By Feinstein, Adam
• The Handbook of Autism: A Guide for Parents and Professionals. By Aarons, Maureen with Gittens, Tessa
• More discussion of Autism as Co-Morbid: Online video Identifying and Treating Co-occurring Mental Health Challenges in Children with ASD
• Journal Article: Comorbidity of intellectual disability confounds ascertainment of autism: implications for genetic diagnosis

Part 2.1: What is Culture/Cultural Variations in Behavior 

Part 2.2: Translation and Adaptation

Autism Speaks 100 Days Kits – Korean

Part 2.3: Mobilizing Community Systems for Intervention

Presentation: Mobilizing Community Systems to Tackle Challenges of Early Detection of ASD in Underserved Populations

Definition: Structural Violence

Strategies for attaining recognition:
1. Go to other service providers
2. Find counter-authority (SLPs for example)
3. Counter powerlessness with power (resistance)          

Part 2.4: South Korea – Some Examples

Part 2.5: Neurodiversity

Part 2.6: Q&A

• Q: Fetal Alcohol Syndrome
• Q: How do we get past the barrier of autism as stigmatizing?
• Q: don’t you have to believe that the system will help to accept a diagnosis?
• Q: What is approach of families with children with significant challenges, where diagnosis cannot be denied?
• Q: How can we go back to our own communities to expose challenges and assumptions to help our own communities
• Q:  Will trajectory of autism continue to increase?
• Q: In countries where services available, are children over-diagnosed in order to receive services?