News and Updates
ASD: Guidelines for Effective Interventions
Project Advisory Committee Meeting Summary
May 13, 2008
Overview
On May 13, 2008, 43 people gathered at the Sierra Health Foundation in Sacramento to review the specifics of the ASD Guidelines Project research findings and preparation for dissemination. Participants included the Oversight Committee and the Advisory Committee, as well as representatives of the Department of Developmental Services, the California Department of Education, and invited presenters. This meeting represented the fourth convening of the project Advisory Committee.
The outcomes for the meeting were as follows:
- A presentation and discussion of research findings for education and behavioral interventions, interventions for adults, and medical & Complementary-Alternative Medical (CAM) treatment interventions;
- An overview of the elements of dissemination and the role of the Advisory Committee in this activity;
- Small group discussions of the variety of tools, potential audiences and alternative ways to disseminate the document.
Attendees participated in a full day of project presentations and group 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., along with invited guest Mary Hudler, M.Ed., Director of Special Education Division at the California Department of Education, delivered opening remarks and a review of the day’s agenda.
The following sections provide a summary of each of the key presentations.
Project Updates (back to top)
Steve Lohrer, Ph.D., Project Director, delivered a project update. In his presentation he reiterated the overarching goal of the project: to produce a document that describes effective evidence-based interventions for persons with ASD as well as processes and factors that contribute to the effectiveness of interventions. The benefits of the ASD Guidelines Project will be to:
- Help users understand and value evidence-based practice
- Identify and select interventions based on each child’s unique needs
- Make decisions based on the current state of evidence-based knowledge regarding ASD
Complementary sections will also be incorporated into the document to enhance the utility of the document. Among these are chapters regarding Intervention Planning and Monitoring, Special Considerations for Adults, Methodology Overview, and Considerations for Delivery of School-based Interventions.
The remainder of the morning session was dedicated to Keynote Presentations by the project methodologists.
Discussion of Research Findings: Educational and Behavioral Interventions
Update on the National Standards Project (back to top)
Susan Wilczynski, Ph.D., BCBA, Project Director of National Autism Center, presented an update on the National Standards Project. A comprehensive literature review identified 1060 peer reviewed articles for possible inclusion. Of these, 615 articles met all inclusion criteria and were retained for full review. Dr. Wilczynski described some of the ways that the research findings will be segmented, including by areas such as increase/decrease of skill domains, diagnostic classification, and age. She then presented greater detail of the findings of a number of focused interventions.
Comprehensive Treatment Models (back to top)
Laura J. Hall, Ph.D., Methodologist at San Diego State University and reviewer for the NSP discussed the findings of the evidence-based review of Comprehensive Treatment Models (CTM) for children and youth with Autism Spectrum Disorders. Based on the established inclusion criteria, as well as considerations such as manualization and intensity, 30 CTM were evaluated. A number of interventions were found not to have published empirical articles regarding the effectiveness of the intervention. Dr. Hall stressed that with the exception of a small number of the CTM’s included in this review there is generally a low number and lesser quality of studies of comprehensive programs. Future research may well result in change of status of some interventions.
Discussion of Research Findings: Medical/CAM Interventions
Medical Management of Autism: Strength of the Scientific Evidence (back to top)
Lynne C. Huffman, M.D., Methodologist at Stanford University presented the findings of the evidence-based review of medical and complementary alternative medical (CAM) interventions for ASD. Associated symptoms and current treatment options were discussed. Of the 841 articles identified in the initial literature search, 85 studies of pharmacologic interventions and 27 studies of CAM interventions met the inclusion criteria. While many CAM treatments have been proposed or tried, there is considerable variability in the measured outcomes.
Discussion of Research Findings: Interventions for Adults
Medical Management of Autism in Adults: First Steps in Determining the Strength of the Scientific Evidence (back to top)
Dr. Huffman also presented findings for the medical management of autism in adults based on studies addressing adults with ASD. The current body of research focused on medical/CAM interventions for adults is quite limited; 113 articles were ultimately included in the review.
The findings for each of these evidence based reviews - the Educational/Behavioral Interventions, Medical/CAM Interventions, and Interventions for Adults – clearly indicate that the number of high quality studies of the effectiveness of ASD interventions is limited and the findings as presented in this project reflect that fact. It is important to note that as the quality and quantity of available research data improves over time the assessment of individual interventions will likely change.
The afternoon session focused on first steps in equipping committee members as ambassadors for the project with the information and tools needed to effectively support dissemination and use of the document.
Preparation for Document Dissemination and Utilization
JoEllen Fletcher, M.S., Chief of the Health Development Section at the Department of Developmental Services and Anne Kuschner, M.A., Project Director at Napa County Office of Education, described the department’s capacity for the dissemination effort and how the Advisory Committee members could enhance that effort.
The National Standards Project and Methodology FAQ’s (back to top)
Dr. Wilczynski presented an outline of the National Standards Project development of the conceptual model and focus of the criteria and project methodology. She noted the methods used to identify articles, including reasons to include or exclude articles. Dr. Wilczynski reviewed the Scientific Merit Rating Scale (SMRS) and Scoring System used when training reviewers and extracting data. She described the process by which SMRS scores were aggregated to determine the strength of evidence outlined in the Evidence Classification System. In order to equip the committee with tools to participate in dissemination, Dr. Wilczynski provided members with a methodology primer to help them effectively respond to questions and concerns they may encounter. These FAQ’s addressed such topics as how an evidence-based practice guideline, a rating scale, and classification system were developed; definitions of key terms; and data selection and organization. She emphasized that the results of the National Standards Project should be interpreted within the context of evidence-based practice. More information and the FAQ’s are available online at www.nationalautismcenter.org.
Small Group Discussions (back to top)
Small groups of 10-12 attendees gathered to discuss timely, effective, and efficient ways to disseminate the ASD Guidelines document to a variety of stakeholder groups. The small group discussions were an opportunity to discuss specific ways for the Advisory Committee to share information about the document as well as how project staff can best support them. Attendees were asked to provide suggestions for specific recipients of the document. DDS provided sign-up sheets for AC members to submit names of key organizations and individuals to receive the document. DDS plans that the document will be disseminated widely in a variety of formats including print and electronic forms.
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ASD: Guidelines for Effective Interventions
Project Advisory Committee Meeting Summary
June 25, 2007
- Project Updates |
- What Does Evidence-based Research Mean in the Context of this Project? |
- Panel Presentation: What the Evidence Tells Us Regarding the Effectiveness of Select Educational and Behavioral Interventions for Persons with ASD |
- Panel Presentation: What the Evidence Tells Us Regarding the Effectiveness of Select Medical and Health Interventions for Persons with ASD |
- Invited Speakers
- |
- What's on Your Mind? |
- Previous Issues
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:
- 31 members of the project’s Advisory Committee (AC)
- Members of the Oversight Committee
- Project staff and writers
- Representatives of the Department of Developmental Services (DDS)
- Parents
- Persons with autistic spectrum disorders and
- Invited presenters.
The outcomes for the meeting were as follows:
- An overview of evidence-based research and the research foundations for evidence based reviews was provided;
- A systematic review of the methodology for both the Educational/Behavioral review and the Medical/ Biomedical review was presented;
- Selected preliminary findings from each of the evidence-based reviews were introduce; and,
- 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 ( Back to the Top)
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 wil 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 comparitvely limited body of published research focused on interventions for adults with ASD, the review will 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 comrhensive 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 throughout the development of the document.
What Does Evidence-based Research Mean in the Context of this Project? ( Back to the Top)
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.
Panel Presentation: What the Evidence Tells Us Regarding the Effectiveness of Select Educational and Behavioral Interventions for Persons with ASD ( Back to the Top)
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 moderatedby 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 greatestextent 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
( Back to the Top)
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-based 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 ( Back to the Top)
Blue Ribbon Commission
An invited presentation by Barbara Firestone, Ph.D., Vice-Chair of the 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 ( Back to the Top)
The meeting concluded with an open discussion session: "What's on your mind?" during which a number of topics were discussed:
- Ethical considerations for the document,
- Document format,
- Accessibility of information,
- Document Dissemination, and
- Future iterations of the document
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 resource for interested parties.
Several suggestions were offeref 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 tthat 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.
Previous Issues:
- 1st Issue | 2006 – Download pdf
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- 3rd Issue | 2007 Download PDF | HTML