On June 5 & 6, 2009, the Foundation co-sponsored its first autism symposium with the Hotchkiss Brain Institute and the Alberta Centre for Child, Family and Community Research. This 2-day symposium brought together leading edge thinkers from Alberta, Canada and North America and over 200 members of the public representing families, caregivers, service providers and scientists. Discussions focused on the latest advances in autism and provided a forum for information sharing and planning of future work.

Conference Welcome and Intro Remarks

Participants:

• Dr. Margaret Clarke, Sinneave Family Foundation
• Ms. Nancy Reynolds, Alberta Centre for Child Family & Community Research

Research Presentation - How and why we aim to diagnose ASD in the very young

Presenters:

• Dr. Lonnie Zwaigenbaum, Stollery Children’s Hospital Foundation Endowed Chair in Autism Research

Dr. Zwaigenbaum’s research focus is early ASD diagnosis. In his Infant Siblings Project he is looking at children as young as 9-12 months – those with older brothers or sisters living with ASD because of their genetic predisposition – for clues about very early diagnosis. An earlier diagnosis results in the opportunity for earlier interventions and, possibly, a chance to alter long-term outcomes.

The Developing Brain in Autism

Presenters:

• Dr. Joe Piven, Professor of Psychiatry, Director of Carolina Institute for Developmental Disabilities, University of North Carolina at Chapel Hill

Research has shown that the brains in people with autism are ‘overdeveloped’, larger than is typical. That revelation has given scientists clues regarding the biology and underlying genetic mechanisms operating in autism.

What Can Mice Tell us About Autism

Presenters:

• Dr. Emmanuel DiCicco-Bloom, Professor, Department of Neuroscience & Cell Biology, Pediatrics, The State University of New Jersey, Rutgers

Dr. DiCicco-Bloom looks at the individual features of the brain in Autism Spectrum Disorders. From that, his research looks at how basic biological processes can act and interact to generate brain differences. The goal is to create models of the ASD brain in mice, and then us these animal models to explore the underlying pathways responsible for their functions and behaviors.

Overview of Alberta Centre for Child, Family and Community Research

Presenters:

• Dr. David Nicholas, Social Work Researcher, Universities of Calgary and Alberta
  
  How to ‘Forge Forward’ -- Experiences and strategies of parents and families living with ASD.
  
• Dr. Veronica Smith (Speech language pathologist, Autism and training issues)
  
  Speaks on her findings from (and an invitation to participate in) a Training Needs Assessment. What is the need for training programs in Alberta? And how are those training programs delivered publicly and privately.
  
• Dr. Suzanne Curtin (An expert in infant speech and language development)
  
  The Infant Siblings Project: examines whether infants at risk for developing ASD exhibit different preferences for speech and communication early in life. That is, are there clues in early language development and use, and attention preferences, that may lead to earlier diagnosis of ASD?

Questions and Answers

The expert panel addresses audience questions on various topics, including:

1. the social appropriateness of hugging in school;
2. how to get from the world of discovery in the lab, to real-world applications;
3. are there studies looking at breastfeeding duration and ASD;
4. research underway regarding oxytocin levels and ASD;
5. the prevalence of  seizures in people with Autism Spectrum Disorders.

Autism: A Lifespan Perspective

Presenters:

• Dr. Peter Szatmari, Professor and Head of the Division of Child Psychiatry, McMaster University,
  Director, Offord Centre for Child Studies

Dr. Szatmari summarizes recent findings from his Pathways to Better Outcomes study, a longitudinal look at outcomes for those with ASD, looking at how ASD looks into adulthood. Dr. Szatmari outlines the differences in outcome between autism and Asperger Syndrome, as well as the important challenges for service providers in shifting their focus from treatment of deficits to promoting a positive quality of life into adulthood keying in on the many skills and strengths that people with ASD demonstrate.

Family Panel - Living Joyfully

Co-Facilitators:

• Dr. Wendy Roberts
• Dr. David Nicholas

Participants:

• Evan Nagel: 19-years-old living with Aspergers syndrome. Discusses overcoming challenges of social interaction with peers and what has helped and hindered him along the way.
• William Karny (Sinneave Board member, Family Advisory Committee member): Granddaughter diagnosed with autism in 2006, and the journey he says has been, “both horrible and wonderful.” Autism is an entire family thing, taking the family, “…from the dark days to the light.’
• Jinelle Castiglione: Works with families living with Autism (privately and in schools).
• Mavis Horner (FAN committee member): whose 13-year-old son has autism. Shares that now ‘… it is not as ugly as it was when our journey began,’ reiterating everyone’s comment that this is not sprint, but a marathon.
• Jo’Anne Strekaf (FAN committee member): whose 18-year-old daughter has autism. A tremendous amount of progress made in the last several years. “Autism brings mixed blessings, and I have met the most amazing people through my daugher.”
  

Conference Wrap up

Participants:

• Dr. Margaret Clarke, Sinneave Family Foundation

We get a tremendous sense of the partnerships present in this room between and among researchers, policy makers, parents and individuals. Thanks to all who participated in this symposium.