Autistic Spectrum Disorders: guidelines for Effective Interventions
Project Advisory Committee Meeting Summary
June 25, 2007
Overview
On June 25, 2007, 65 people gathered at the Sheraton Gateway Hotel in Los Angeles to learn more about the specifics of the ASD Guidelines Project empirical data review process and preliminary results. Participants included a broad representation of both professionals and family members:
The outcomes for the meeting were as follows:
1. An overview of evidence-based research and the research foundations for evidence based reviews was provided;
2. A systematic review of the methodology for both the Educational/Behavioral review and the Medical/ Biomedical review was presented;
3. Selected preliminary findings from each of the evidence-based reviews were introduce; and,
4. A forum for discussion of overarching project considerations and recommendations was provided.
Attendees participated in a full day of project presentations and panel discussions. Oversight Committee Chair Rick Ingraham, M.S., Manager, Children & Family Services Branch, Department of Developmental Services and Advisory Committee Co-Chairs Patrick Maher, M.D., and Sandee Kludt, Ed.D., delivered opening remarks. Facilitator Karen Bodenhorn, MPH, gave an overview of the day’s agenda, goals, and ground rules, including a request that participants respect the preliminary nature of the data to be presented during the day.
The following sections provide a summary of each of the key presentations.
Project Updates
Steve Lohrer, Ph.D., Project Director, delivered a project update. He highlighted the addition of a new section to be included in the final document – Transition to Adulthood and Special Considerations for Adults with ASD. Noting that the decision to include this section was driven largely from input by committee members, this section will include a narrative discussion concerning adult transitions from school to vocational and community residential settings as well as a review of empirical literature. Given the comparatively limited body of published research focused on interventions for adults with ASD, the review will be likely be somewhat different than the reviews currently underway.
Dr. Lohrer also reported changes to the project timeline. Recognizing that it will take more time to do a quality and in-depth review that is both comprehensive and user friendly, the target date for completion has been moved to the end of May 2008. The new timeline incorporates the addition of the section on adults with ASD and allows AC input during throughout the development of the document.
What Does Evidence-based Research Mean in the Context of this Project
Gina Green, Ph.D., Project Consultant, provided a keynote presentation outlining the research foundations of the evidence based review framework. The talk reinforced the importance of such review efforts within the field of autism spectrum disorders and introduced specific core elements for the methodology to be used in this project. Dr. Green described an emphasis within this project on the transparency of the review effort, including both article selection and the specific rating system to be utilized.
For more information PowerPoint Slides from the talk delivered by Dr. Green can be accessed via the following link: http://asdguidelines.org/resources.html.
Panel Presentation: What the Evidence Tells Us Regarding the Effectiveness of Select Educational and Behavioral Interventions for Persons with ASD
Susan Wilczynski, Ph.D., Director of the National Standards Project (NSP) of the National Autism Center presented information that focused on the evidence-based review of educational/behavioral interventions. She noted this effort currently being conducted by the National Autism Center, in collaboration with the ASD Guidelines Project entails a systematic and comprehensive review of more than 1,000 peer reviewed published scientific articles. The effort has been assisted by the involvement of several members of the ASD: Guidelines Advisory Committee, ASD: Guidelines research team members and project staff. When completed, the findings of the NSP will be reported by California’s ASD Guidelines Project. Dr. Wilczynski provided a detailed description outlining the process for article selection and protocol for article review developed by the NSP. Selected findings from four interventions were highlighted with a detailed discussion of the ratings.
For additional information, PowerPoint Slides from the talk delivered by Dr. Wilczynski can be accessed via the following link http://asdguidelines.org/resources.html.
A panel discussion followed Dr. Wilczynski’s presentation. The panel, including Steve Lohrer and Sandee Kludt and moderated by Dr. Green, responded to questions regarding details of the methodology and specifics of selected intervention ratings as well as broader implications for implementation. A key topic of discussion involved actual or perceived bias in the review process. In response, panel members outlined strategies that have been adopted by the NSP to minimize bias to the greatest extent possible. The strategies have included: employing a collaborative process that has invited input throughout the project development; transparent and objective article review protocol; and involvement of 90 reviewers from a range of disciplines representing diverse theoretical orientations. In addition, Dr. Wilczynski noted the NSP will still consider inclusion of additional reviewers who meet the qualification criteria and invites recommendations for additional reviewers.
Another area of interest concerned the potential bias in results favoring ‘older’ interventions. That is, the potential that an intervention that has been studied for twenty years will naturally have a higher number of studies and therefore a higher rating. Though it was acknowledged that older interventions may indeed have a higher number of research articles, panelists did note that the rating criteria gives greater weight to higher quality studies, not simply the number of articles representative of an intervention. For example, a more recent intervention subjected to a limited number of rigorous and well-controlled studies, could receive high ratings.
Finally, concern was expressed that negative outcomes of interventions may be underreported or not reported. Panelists noted that the methodology applied to this review would report research findings whether they are positive or negative and/or potentially harmful to health and safety.
Panel Presentation: What the Evidence Tells Us Regarding the Effectiveness of Select Medical and Health Interventions for Persons with ASD
Lynne Huffman, M.D., Project Methodologist, presented information pertaining to the evidence-based review for medical and health interventions. Dr. Huffman shared that the medical and health review is being carried out separately from the review of educational/behavioral interventions under the National Standards Project, but has employed a similar methodological approach and article review protocol. In addition to a detailed presentation of the article inclusion and exclusion criteria used in the medical and health evidence-base review, Dr. Huffman provided select preliminary findings. In her discussion, Dr. Huffman highlighted some of the gaps in the medical research to date as well as some of the obstacles common to more and better research.
For more information, PowerPoint Slides from the talk delivered by Dr. Huffman can be accessed via the following link: http://asdguidelines.org/resources.html.
Invited Speakers:
Blue Ribbon Commission
An invited presentation by Barbara Firestone Ph.D., Vice-Chair of the California Legislative Blue Ribbon Commission on Autism provided meeting attendees with an update from the Commission. More information about the Commission and its activities can be found on their website http://senweb03.senate.ca.gov/autism/index.html .
O’Connell Advisory Committee
Allan Lloyd-Jones, Ph.D., representing the California Department of Education, Special Education Division, provided an update from the Superintendent’s Autism Advisory Committee, details of which may be found at http://www.cde.ca.gov/sp/se/as/saac.asp .
What’s On Your Mind?
The meeting concluded with an open discussion session: “What’s on your mind?” during which a number of topics were discussed:
A particular recommendation was made that this document maintain a high ethical standard and in particular, that the guidelines include specific language denouncing the use of aversive treatments. One suggestion was made to include such language within the Guiding Principles of the document. Additional discussion focused on document formatting, emphasizing that information be presented in a useful manner and that detailed rating information be available as a resource for interested parties.
Several suggestions were offered for consideration in the next iteration of the Guidelines document, such as the inclusion of qualitative data and discussion of additional co-morbidities (psychosis, etc.) that are not included in this document. Finally, suggestions were raised regarding dissemination of the document and translating evidence-based findings to the field. It was noted that such efforts would involve efforts of DDS, CDE, and other service providers to look to building capacity for “effective” interventions as identified by this evidence-based review.
At the end of the day, attendees were invited to complete an evaluation of the meeting. Overall, these evaluations affirmed that it had been a productive and valuable meeting. Respondents especially appreciated the presentation of new information and the opportunity to hear first hand from the methodologists working on the evidence-based reviews.