2009 CAIRN Conference

Report

Since its inception in 2001, CAIRN has brought together parents, practitioners, researchers and policy-makers from across the country to address issues related to Autism Spectrum Disorder (ASD). To date, three national CAIRN conferences have been held in Toronto focusing on bridging the gaps between evidence and practice, and fostering collaboration. The culmination of the 2004 conference was the establishment of a national ASD research agenda.

In our funding proposal to Health Canada we described a project in which the main goal was to generate and disseminate evidence-based knowledge on ASD and to enhance awareness and collaboration among a variety of stakeholders such as parents, professionals, researchers, policy-makers, and people with ASD. (See the Conference Report Executive Summary.)

To reach that goal, we set four objectives. The first of these was to develop and post an online national survey of research priorities in ASD to be completed by parents, professionals, researchers, policy makers, and people with ASD. The second was to hold a national ASD conference in the fall of 2009 to bring together members of all stakeholder groups from across Canada to share the findings from the national survey of research priorities in ASD, and share and discuss the initial findings of the Pathways in ASD research project. The Pathways project, funded by the Canadian Institutes of Health Research, includes both a national longitudinal study of children with ASD and a study of current ASD policies in Canada. The third objective was to enhance the CAIRN website (www.cairn-site.com) making it the primary Canadian bilingual source for disseminating evidence-based information about ASD. The final objective was to synthesize the information obtained from Objectives 1 and 2 to develop an updated ASD research agenda.

The Online Survey

We identified the research priorities of 1003 survey participants (926 English, 77 French). Wide distribution of the survey instrument was accomplished by contacting members of CAIRN’s web site subscription list and posting it on the CAIRN, Autism Speaks (AS), and Autism Society Canada (ASC) Web sites. Personal contacts with professional associations, student groups, and other parent organizations were made by CAIRN, ASC, and AS representatives. The survey was also distributed through a list-serve by a parent representative on the CAIRN Steering Committee. The priority research topics/questions identified through the survey were (number of responses in parentheses):

1. Treatment (839)
2. Education (610)
3. Transitions (531)
4. Causes (428)
5. Knowledge translation (402)
6. Diagnosis/screening (397)
7. Health Issues (374)
8. Outcomes (365)
9. Policy (328), and
10. Epidemiology (243)

Categories of survey respondents (more than 1 category could be selected)

For further information about the findings, please click here

The Conference

On October 2, 2009, we held a national ASD conference in Toronto. One hundred and four people attended the 4th CAIRN conference, with representation from parent groups, Autism Speaks Canada, researchers, clinicians, other service providers, Autism Research Training program students, policy makers from all provinces, and, for the first time, members of Autism Society Canada’s Advisory Committee of Adults on the Spectrum. The inclusion of the adults living with ASD was met very positively by all the participants, who remarked on the fulfillment of a previously unmet need to hear the voices of this constituency, and by the Advisory Committee’s members, themselves, who felt heard and welcomed to the conference.

In the course of this conference we were able to share and discuss a) the findings from the national survey of research priorities in ASD, and b) the initial findings of Pathways in ASD, a national study examining the developmental pathways of children with ASD and current ASD policies in Canada.

Conference Activities

The group of 104 participants was welcomed by Dr. Peter Szatmari, and Senator Jim Munson. Ms Lillian Bayne of L. Bayne & Associates, Victoria, British Columbia, outlined the day’s format and activities, which included presentations on various aspects of the Pathways in ASD project by Dr. Charlotte Waddell, Mr. Cody Shepherd, Dr. Susan Bryson, Dr. Eric Fombonne, and Dr. Peter Szatmari. Ms Patricia Colton presented the online survey findings, and small group work sessions followed.

Participants were assigned to six groups based on their pre-selected topic preferences. All of the groups, each based on the top choices as indicated in the online survey, had a mix of professionals, parents, and adults living with ASD.

Each of the small group sessions was facilitated by scientists with special expertise in its topic. The Treatment group was facilitated by Dr. Susan Bryson, Education by Dr. Pat Mirenda, Transitions by Dr. Isabel Smith, Causes by Dr. Peter Szatmari, Screening/Diagnosis by Dr. Lonnie Zwaigenbaum, and the Knowledge Translation session was facilitated by Dr. Charlotte Waddell and Mr. Cody Shepherd.

The facilitators introduced each topic using a template composed of four questions: Why is this an important topic? What do we know about it? What have we learned in recent years (i.e., new developments of which everyone will not be aware)? and What don’t we know?

Each participant was asked to identity why this topic area was of interest to them, and what in particular they wanted to know in this area. Participants were asked to reflect and share their thoughts on the following:

• Why does this question matter?
• What will an answer to this question tell us?
• How will the knowledge generated be used?
• Are there other research topic areas to which this needs to be linked? Why?

Participants were encouraged to make diary entries based on these questions:

• What did I learn in this session?
• What did I agree with? Disagree with?
• What will I take away?
• What will I talk to others about?

Participants were then asked to provide their advice to research teams once the most important research question(s) had been identified. (To see the reports, click on each topic, above.)

These reports also revealed several cross-cutting themes and needs, as follows:

Life Span Focus
The focus on early intervention and early years has served CAIRN and Pathways well in its work to date, however, there is great interest among stakeholders, especially “persons on the spectrum” and family members, to ensure a life span focus in research and intervention that considers people’s experiences and needs across a lifetime. In exploring the topic of screening/diagnosis, for example, in addition to initial diagnosis of ASD, such an approach would be sensitive to the co-morbidities that might emerge, or decline, over the life of a person on the spectrum.

Broad Conception of Transitions
Participants noted that critical transitions occur at many points over the life span of persons on the spectrum and include the impacts of transitions experienced by their family members (e.g. birth, initiation of intervention/treatment, school entry, school exit, as well as parent’s retirement, parent’s job loss, parent’s death). Rather than thinking of transitions as a discrete topic area, it may be fruitful to consider transitions as a theme with discernible impacts on other areas - treatment/intervention strategies, education, causes, screening/diagnosis and knowledge translation.

Knowledge Transfer/Translation
Similar views were expressed about the need to integrate knowledge transfer/translation into all other topic areas in order to ensure effective communication and uptake of new knowledge by the wide range of players who could benefit.

Multi-Disciplinary Inquiry
Given the multiple possible experiences and impacts of ASD on individuals, family members, the public and service systems, and society, research teams should be as multi-disciplinary as possible. Economic considerations, for example, may be a critical dimension of study and the inclusion of economists and other social scientists as part of a research team is an important direction for future research.

Broad Partnerships
Participants welcomed the opportunity to be engaged in developing a research agenda for ASD and encouraged the expansion of research partnerships and teams to include partners from a range of sectors, such as employers as well as policy makers, persons on the spectrum, family members and clinicians.

Need for Environmental Scans and Inventories
Participants expressed an interest in knowing what is going on across the country with respect to each of the topics under consideration. Participants wanted to know, for example, what policies govern education in each province and territory? What educational programs, with what eligibility criteria, are offered? What clinical interventions, with what eligibility criteria, are funded in each province and territory?

As well, participants sought access to a reliable, trustworthy, evidence-informed, and, ideally, synthesized source of information and knowledge on effective interventions, as well as information on the specific, expected outcomes of these interventions. There was considerable interest in undertaking more structured environmental scanning and in creating related accessible databases or information resources for stakeholders.

Education and Training
Related to the need for information, stakeholders expressed a need to better educate and/or train the range of players involved in effective ASD intervention. Articulation and communication of desired or expected outcomes of interventions was seen as an important element of the education process.

Health Services Research
It was noted that a greater emphasis on health services research may be needed to generate knowledge on how and why the behaviours and practices of health service and policy decision makers change. Expanding enquiries so as to link new knowledge generated at the ‘bench’ with its application to interventions, and even further, to policy and funding decisions, would create a more comprehensive approach to studying ASD.

Differences Related to Gender and Sex
Participants noted the need to study possible differences in all aspects of ASD and all topic areas as they relate to both sex (the state of being male or female) and gender (the social and cultural constructions of masculinity and femininity).

The Research Agenda

The stakeholder meeting provided participants with an opportunity to work in small groups to identify priorities for research in six topic areas: treatment, education, transitions, causes, knowledge transfer, and screening/diagnosis. See the reports for the questions that were formulated.

During the evening of October 2, 2009, a group of scientists, many of whom were new to CAIRN, came together in a meeting funded by the Canadian Institutes of Health Research (CIHR). There, the themes that emerged from the small group sessions were discussed and distilled to research areas that need to be addressed in Canada.

The CAIRN Website

To enhance the CAIRN website (www.cairn-site.com) as the primary Canadian bilingual source for disseminating evidence-based information about ASD, plans are underway to disseminate pre-publication data, summaries of evidence, and other documents related to the themes identified in the CAIRN conference.

Evaluation

One hundred and four people participated in the forum. Forty-four (44) evaluation forms were completed (42% response rate). The majority of respondents thought that the forum objectives were met.

• Participants appreciated the short, focused overviews of research findings presented. They particularly appreciated efforts to make the findings accessible by limiting the use of technical terms and speakers’ engagement in question-and-answer and dialogue with members of the audience.
  
• Participants appreciated the diversity of the group, with representation of key stakeholders from across the country. They felt the atmosphere created facilitated engagement and inclusion of the many perspectives represented. The large group sessions and the lunch provided good occasions for highly valued networking.
• Participants found great value in the small group discussions, which were seen to be both informative and engaging. The round table format gave participants opportunities to contribute meaningfully to the discussion and to ensure a good balance of the range and mix of perspectives represented.
• Some participants did not get to participate in groups on the topics of their choice, and others wished there was an opportunity to participate in more than two topic-based discussions.
• Given the depth and breadth of the topics discussed, some participants wished for more time for this kind of engagement.
• Ground rules that set the tone for engagement are an important aspect of meetings such as this. Engagement of a wide range of stakeholders, including parents and persons “on the spectrum” is highly valued. Greater efforts to engage policy-makers may be required.
• Small group discussions, guided by clear process instructions, offered highly valued opportunities for sharing and learning.
  

Here is a selection of participants’ opinions of the presentations and small groups:

“This [conference] reflected how things have changed since 2001. Then, parents were very much on the side and researchers and clinicians were the focus. Now, there is a much stronger sense that we all need to work together.”

“Very good. Made efforts to present results in such a way that “non-researchers” could understand.”

“Good discussions (two-way). Presenters were experts but also good listeners. Important issues [were] tackled with objectivity.”

The young adults living with ASD who attended appreciated the opportunity, usually denied them, of having their experiences, perspectives, and opinions heard by those with the authority to influence policies and practices affecting them.

“I really liked the equal opportunity for sharing my views and hopefully offer my insights into my ASD.”

Other participants clearly appreciated the presence of the young adults with ASD in the discussion groups, too.

“Especially enjoyed hearing from individuals on the spectrum -- helped keep the focus.”

“Great dialogue and strategies and perspectives. Very interesting “on the spectrum” participants.”

The views of participants will provide guidance for planning and organization of future meetings of this kind that seek to engage a wide range of stakeholders in ASD research, from researchers and clinicians, to policy-makers, persons “on the spectrum” and family members.

Our next steps involve

• Creating strategies for disseminating the ideas and decisions arising from the conference
• Assisting the evolution of the work groups formed during the Scientists’ Meeting that followed the CAIRN Conference
• Developing government, private, and public partnerships for applied research in ASD

Slides

Welcome by Peter Szatmari (PPT, 104kb)

SOCOM presentation (PPT, 263kb)

Policy Pathways (PPT, 1.59MB)

Pathway Age of Diagnosis (PPT, 629kb)

Bryson Pathways Preliminary Outcomes (PPT, 267kb)

ASD Survey Results (PPT, 61kb)