This was a challenging task requiring countless hours of article review and discussion over a one-year period. Although opinions differed at times, enthusiasm for the project never waned, and consensus was achieved. Throughout this involved process, the focus was always on the children and families impacted by Autism Spectrum Disorders. We are grateful to the consumers and families who shared their stories, experiences, and opinions, and who gave meaning to our work.
The members of the Committee collaboratively developed a common understanding of research and evidence-based practice, selected interventions to evaluate, and outlined a literature review and rating process. The Committee collectively endorses the findings and conclusions expressed herein. However, due to the diversity of perspectives and experiences within the Committee, the conclusions and thoughts on each position in this document do not necessarily represent the individual opinions of each member or the organization they represent. Page 5 CHILDREN?
S SERVICES EVIDENCE-BASED PRACTICE ADVISORY COMMITTEE MEMBERS OF THE AUTISM SPECTRUM DISORDERS PROJECT Nancy Connolly (Co-Chair) Special Education Consultant Department of Education Lindsey Tweed (Co-Chair) Director of Clinical Policy and Practice Children? s Behavioral Health Services Department of Health and Human Services Amy Beaulieu (Staff) Policy Associate, Cutler Institute Muskie School of Public Service University of Southern Maine Amy Benham Special Education Teacher, Autism Program Winslow Elementary School Sharon Brady Director of Special Services
Riverside RSU #26 Betty Carolin Clinical Coordinator Charlotte White Center Janine Collins Consumer Advocate & Research Associate University of Maine Center for Community Inclusion & Disability Studies Nancy Cronin PDD Systems Change Coordinator Maine Developmental Disabilities Council Cathy Dionne Parent & Co-Director Autism Society of Maine Page 6 Cynthia Dodge Director of Clinical Services Spurwink Services Roxy Hennings Director of Continuous Quality Improvement Division of Juvenile Services Department of Corrections Alan Kurtz Research Associate
University of Maine Center for Community Inclusion & Disability Studies James Pelletier Program Manager Department of Health and Human Services Division of Child Welfare Lora Perry Parent & Executive Director of ABA Services Providence of Maine Matthew Siegel Medical Director Developmental Disabilities Program Spring Harbor Hospital Maine Medical Center Lynn Silva Assistant Director of Student Support Services Portland Public Schools Erica Thompson Special Services Administrator, MSAD # 54 Distinguished Educator Child Development Services
Interventions for Autism Spectrum Disorders STATE OF THE EVIDENCE EXECUTIVE SUMMARY| Introduction| The number of children in Maine with Autism Spectrum Disorders (ASD) has increased significantly over the past decade. Since 2000, the number of children receiving Special Education services for ASD in Maine schools jumped from 594 to 2,231in 2008 – an increase of 276%. A recent study estimated that the total cost of caring for a person with autism over his or her lifetime can reach $3. 2 million, with more than $35 billion spent collectively per year (Ganz, 2007).
To conserve already scarce resources and offer the best possible services to children with ASD, it is necessary to identify and understand the treatments and methods that produce positive outcomes as proven by research. Science helps to clarify some of the confusion about what “works” and enables evidence-informed treatment decisions, thus saving precious time and resources. Autism Spectrum Disorders are a category of neurodevelopmental disorders characterized by distinct and pervasive impairment in multiple developmental areas, particularly social skills and communication (American Psychological Association, 2000).
Children with ASD exhibit atypical patterns of social interaction and communication that are not consistent with their developmental age. These patterns become apparent in the first few years of life and are generally lifelong challenges (Schieve, Rice, Boyle, Visser, & Blumberg, 2006). Early, intensive identification and intervention can greatly improve outcomes for children with ASD (Eikeseth, Smith, Jahr, & Eldevik, 2007). Early and effective treatment also offers opportunity for significant cost/benefit improvement through regained productivity of individuals with ASD and their caregivers (Ganz, 2007).
Evidence-Based Practice| Evidence-based practice is a framework for integrating what is known from research into real-world settings in a manner that responds to the individual characteristics and values of the individual being served. There are three main components to evidence-based practice (APA Presidential Task Force on EvidenceBased Practice, 2006; Burns & Hoagwood, 2002): Best Research Evidence: In order to integrate research into practice, it is critical to be aware of the scope and quality of the literature.
The quality and type of research is an important factor in the evaluation of evidence. Efficacy, the extent to which the treatment had the desired effect on the outcomes, is the critical determinant of empirical evidence (Chorpita, 2003). Clinical Expertise & Judgment: Practitioners in an evidence-informed framework exercise their clinical judgment to select methods that address the client? s needs by taking into account the client? s Page 7 environment, life circumstances, strengths, and challenges (APA Presidential Task Force on Evidence-Based Practice, 2006).
Values: Evidence-based practice is consistent with the child and family? s values and perspectives (APA Presidential Task Force on Evidence-Based Practice, 2006; Chambless & Hollon, 1998; Chorpita, 2003). Engaging families in the process of evaluating, identifying, and implementing evidence-based interventions is critical. Family engagement promotes collaboration between families and practitioners and better informs individual treatment planning. This project focused on the first factor in evidence-based practice – best research evidence.
The purpose of this work was twofold: Systematically review the research literature for treatment in ASD and subsequently determine the levels of empirical evidence for treatments commonly used for children with ASD. It is hoped that addressing this first element of evidence-based practice will enable providers, families, and systems to use the latest research to better inform treatment planning, decision making, policy making, and resource development. Process|
In response to a growing need for information on evidence-based treatments for ASD, the Maine Department of Education and the Maine Department of Health and Human Services led a partnership of stakeholders in a systematic review of the latest research on treatment for ASD. This review was designed as an update to the Maine Administrators of Services for Children with Disabilities (MADSEC) Autism Task Force Report issued in 2000, one of the first efforts in Maine to review the treatment literature for ASD.
Over the course of a year, laypersons, state agency staff, providers, and researchers, reviewed more than 150 studies of 43 different treatments for children with ASD. The Committee objectively reviewed the research using a validated rubric, the Evaluative Method for Determining Evidence-Based Practice in Autism (Reichow, Volkmar, & Cicchetti, 2008), and assigned each intervention a level of evidence rating. The quality of each study was carefully evaluated using a set of primary and secondary quality indicators and factored into the determination of the level of evidence using a corresponding rating scale.
Levels of Evidence| Established Evidence: The treatment has been proven effective in multiple strong or adequately rated group experimental design studies, single-subject studies, or a combination. Results must be replicated in studies conducted by different research teams. Promising Evidence: The intervention has been shown effective in more than two strong or adequately rated group experimental design studies or at least three single-subject studies. Additional research is needed by separate teams to confirm that the intervention is effective in across settings and researchers.
Preliminary Evidence: The intervention has been shown effective in at least one strong or adequately rated group or single-subject design study. More research is needed to confirm results. Page 8 Studied and No Evidence of Effect: Numerous (three or more) strong or adequately rated studies have determined that the intervention has no positive effect on the desired outcomes. Insufficient Evidence: Conclusions cannot be drawn on the efficacy of the intervention due to a lack of quality research and/or mixed outcomes across several studies.
Evidence of Harm: Studies or published case reports indicate that the intervention involves significant harm or risk of harm, including injury and death. Findings| Level of Evidence Intervention Category Intervention(s) Established Evidence Applied Behavior Analysis Applied Behavior Analysis for Challenging Behavior Applied Behavior Analysis for Communication Applied Behavior Analysis for Social Skills Early Intensive Behavioral Intervention (EIBI) Augmentative and Communication Picture Exchange Communication System (PECS) Alternative Pharmacological Approaches Applied Behavior Analysis
Applied Behavior Analysis for Adaptive Living Skills Augmentative and Communication Promising Evidence Halperidol (Haldol) – Effective for aggression Methylphenidate (Ritalin) – Effective for hyperactivity Risperidone (Risperidol) – Effective for irritability, social withdrawal, hyperactivity, and stereotypy Voice Output Communication Aid (VOCA) Alternative Psychotherapy Preliminary Evidence Cognitive-Behavioral Therapy (CBT) for Anxiety Applied Behavior Analysis Applied Behavior Analysis for Academics – Numeral recognition, reading instruction, grammatical morphemes, spelling. Applied Behavior Analysis for Vocational Skills
Augmentative and Communication Sign Language Alternative Developmental, Social-Pragmatic Models Developmental, Social-Pragmatic Models – Eclectic Models Diet & Nutritional Approaches Vitamin C – Modest effect on sensorimotor symptoms only Pharmacological Approaches Atomoxetine (Strattera) – Effective for attention deficit and hyperactivity Clomipramine (Anafranil) – Effective for stereotypy, ritualistic behavior, social behavior Page 9 Level of Evidence Intervention Category Intervention(s) Clonidine (Catapres) – Effective for hyperactivity, irritability, inappropriate speech, stereotypy, and oppositional behavior
Psychotherapy CBT for Anger Management Sensory Integration Therapy Touch Therapy/Massage Other Hyperbaric Oxygen Treatment Studied and No Evidence of Effect Pharmacological Approaches DMG Secretin Insufficient Evidence Applied Behavior Analysis Applied Behavior Analysis for Academics – Cooperative learning groups Augmentative and Communication Facilitated Communication Alternative Diet & Nutritional Approaches Developmental, Social Pragmatic Models Guanfacine (Tenex) Intravenous Immunoglobin Melatonin Naltrexone (Revia) SSRIs: Citalopram (Celexa), Fluoxetine (Prozac) Valproic Acid (Depakote) Sensory Integration Therapy
Auditory Integration Training Sensory Integration Training Social Skills Training Social Skills Training Social Stories™ Other Page 10 DIR/Floortime RDI SCERTS Solomon? s PLAY model Pharmacological Approaches Evidence of Harm Gluten-Casein Free Diets Omega-3 Fatty Acid Supplements Vitamin B6/Magnesium Supplements TEACCH Pharmacological Approaches Intravenous Chelation Using Edetate Disodium Conclusions| Based on its investigation of the research literature, the Committee concludes the following: The research clearly indicates that there are effective treatments for some core deficits and related challenges of ASD.
For instance, comprehensive behavioral treatment has some of the most compelling evidence which emphasizes the importance of early and intensive intervention for children with ASD. Substantial investment in quality research is needed to further define effective treatment for ASD. Research specific to educational and behavioral interventions for children with ASD in the context of schools is seriously lacking. This is of deep concern since children receive a great deal of services through the education system. Comparative research on the efficacy of various treatment models would be very valuable.
There is a dearth of research on treatment of older youth, adolescents, and adults with ASD. This is worrisome given that the number of adults with ASD is expected to significantly increase in the coming years as children with ASD mature. Families should be informed consumers of treatment and ask questions of providers about the nature and quality of the research behind the treatment their child is receiving. Providers need to make treatment decisions in active partnership with families while integrating relevant research into their practice and treatment planning process.
Resources are needed to build capacity throughout Maine in order to efficiently and effectively deliver evidence-based treatments to children in their schools, homes, and communities. This requires resources for training, evaluation, and workforce development. For example, ABA has some of the best evidence for treatment in ASD yet Maine has only 26 certified ABA practitioners, with most located in the southern counties. Evidence-based practice does not seek to dictate the interventions that should be used at the expense of others.
Rather, it is a framework to integrate what is known from research into real-world practice in a manner that is accessible to families, responsive to what children need, and consistent with what providers can accomplish given available skills and resources. The first step toward evidence-based practice is creating awareness of what the best available research says. It is no longer enough to use what we believe works, we must consider what we know works in order to close the gap between science and practice, utilize limited resources wisely, and best serve Maine children with ASD.
Page 11 Interventions for Autism Spectrum Disorders STATE OF THE EVIDENCE INTRODUCTION| Recent statistics indicate that the number of children diagnosed with Autism Spectrum Disorder (ASD) has skyrocketed – the latest figures suggest that approximately 1 in 91 children in the United States are currently diagnosed with ASD (Kogen, Blumberg, Schieve, Boyle, Perrin, Ghandour, et al. , 2009). In Maine, the rate is thought to be even higher with an estimated 1 in 77 children identified with ASD – the second highest rate in the nation (Thoughtful House Center for Children, 2009).
In response to increasing demand for services for children with ASD in our schools and communities, the Maine Departments of Education and Health and Human Services partnered with members of the community to assess the research and determine the level of scientific evidence for interventions currently available for ASD. This project continued the efforts of the Children? s Services Evidence-Based Practice Advisory Committee (“the Committee”) to study and disseminate information on the scientific evidence for treatments of childhood behavioral health conditions.
This work also serves as a comprehensive update to the Autism Task Force Report issued in 2000 by the Maine Administrators of Services for Children with Disabilities (MADSEC). To the best of the Committee? s knowledge, the MADSEC report was the first multidisciplinary effort in Maine to objectively examine the research for select interventions for ASD. In the years since MADSEC issued its report, the breadth and depth of the research of ASD has evolved; in fact, more than 2,100 studies regarding autism have been published in peer-reviewed journals since 2001i.
Given the significant number of children with ASD being served in Maine and advances in research over the last decade, a new review of the literature is timely and appropriate. The Committee evaluated peer-reviewed research for more than 40 interventions for children and youth with ASD, including psychosocial, behavioral, developmental, complementary, educational, and pharmaceutical treatments. A wide variety of treatment options have been developed for children with ASD and it can be difficult for parents, educators, and practitioners to know what could be most effective given each child?
s unique circumstances. Science helps to clarify some of the confusion about what “works. ” Well-designed studies can show that some interventions are very effective for certain symptoms or behaviors while others are not. The implications of this information are profound; understanding what works as demonstrated by research can inform choices that improve lives (Steele, Roberts, & Elkin, 2008). Page 12 How to Use This Report| This document is intended to provide an updated view of the best available research evidence for treatments for Autism Spectrum Disorders.
Certain stakeholders may find this report especially useful: Families, Educators, & Practitioners: Evaluating and selecting treatments can be a daunting task. This report provides an objective evaluation of the best available research evidence for the myriad of treatment options currently available for ASD (Steele, et al. , 2008). Policymakers: As Maine continues to enhance its system of care, it is hoped that policymakers will consider this information in their decision making so that all children in Maine have sufficient access to evidence-based interventions.
Business & Community Leaders: ASD touches the lives of many families in the places where we live and work. The Committee hopes that sharing information on effective treatment methods inspires leadership, innovation, and support among business and community leaders to improve service delivery systems. Researchers: Describing the amount and quality of research behind available treatments draws attention to areas needing further research and investigation. Children with ASD truly have a spectrum of challenges and abilities therefore treatments should be tailored to reflect their individuality.
It is not enough to simply use any evidencebased treatment – they are not “one size fits all. ” The treatments discussed in this report vary widely in their focus, intensity, duration, and methods, and thus must be carefully evaluated and matched to a child? s unique needs. It is not the intention of this report to indicate what interventions should or should not be used; families should always decide what treatment best meets the needs of their child. Children have a right to treatment that is reflective of their individual strengths and challenges and that accommodates any change
in the nature and intensity of their needs (Office of Child and Family Services, March 2008). However, families and providers should seek the most current and complete research information to factor into their decisions regarding treatment. As “Treatment” & “Intervention” Treatment is generally understood as a service used to correct or alleviate a specific medical condition, issue, or problem. The effectiveness of treatment is usually evaluated and measured based on the individual? s outcome (Barker, 1999). Intervention includes treatment, but also encompasses other
services or activities practitioners use to address or prevent an individual? s problems (Barker, 1999). Intervention is a term sometimes used in social work, education, and other ecological, cross-disciplinary fields to describe services that address the problems of an individual. The Committee reviewed “treatments” and “interventions” without regard to the field or entity that might utilize them. These terms are used interchangeably in this report. Page 13 science continues to evolve, it is expected that ASD treatment will be further refined.
Therefore, periodic reassessments of the scientific literature will be needed so that families and providers have current information in order to inform their choices and decisions. PROJECT ORGANIZATION| The Children? s Services Evidence-Based Practice Advisory Committee formed in 2007 as the childfocused Subcommittee of the DHHS EvidenceBased Practice Advisory Committee. The Committee is charged with reviewing the research base for treatments of childhood behavioral health disorders in order to better inform policy, practice, and resource development in Maine.
It is not a policy-making entity, but an advisory body that informs state agency work. The Committee is led by Children? s Behavioral Health Services, a division of the Office of Child and Family Services. Departnent of Education DHHS EvidenceBased Practice Advisory Committee Children’s Services Evidence-Based Practice Advisory Committee Autism Spectrum Disorders Project FIGURE 1: PROJECT ORGANIZATION A diverse group of stakeholders convened in 2007 to review and rate the research on psychosocial treatments for disruptive behavior disorders (Beaulieu, 2008).
Following this successful review, the Committee turned its attention to ASD due to a growing concern about the needs of this population. The Maine Departments of Education and Health and Human Services agreed to jointly lead this project in recognition of the mutually important roles that education and behavioral health systems play in serving children with ASD. The Muskie School of Public Service provided technical assistance, research support, and data analysis to the project through a cooperative agreement with the Office of Child and Family Services.
Due to the nuances involved in ASD research and the relevance of this issue across systems, the Committee incorporated stakeholders and experts in the field of ASD, including parents, an adult with ASD, educators, providers, and advocates. The Autism Spectrum Disorders project began in August of 2008. Initial work focused on establishing common language and understanding about ASD, research methodology, and evidence-based practice. Following a review of the literature, the Committee adopted a systematic review process with a corresponding rating scale to organize the work. ABOUT AUTISM SPECTRUM DISORDERS|
Definition| Autism Spectrum Disorders, also referred to as Pervasive Developmental Disorders (PDD), are a category of neurodevelopmental disorders that include: Page 14 Autistic Disorder (autism); Pervasive Developmental Disorders-Not Otherwise Specified (PDD-NOS); Asperger? s Syndrome; Rett? s Disorder; and Childhood Disintegrative Disorder. ? ? ? Autism Spectrum Disorders are now more common than childhood cancers in the United States. (Gloeker, Percy, & Bunin, 2005) Due to their lower prevalence and differing symptom profile, Childhood Disintegrative Disorder and Rett? s Disorder were not included ? ? ?
in this review. Research of treatments for ASD generally does not include children with these two diagnoses. Studies that focused on children with Autistic Disorder, PDD-NOS, and/or Asperger? s Syndrome were reviewed. Because functional ability and expression of symptoms can vary widely among children with these diagnoses, from profound disability to high functioning, they are said to exist on a “spectrum. ” The Committee chose to use the term “Autism Spectrum Disorders” rather than Autism or PDD in recognition that no two children are impacted by these disorders in exactly the same manner or to the same degree.
According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR), Autism Spectrum Disorders (ASD) are characterized by distinct and pervasive impairment in multiple developmental areas, primarily social skills and communication (American Psychiatric Association, 2000). These disorders are marked by the presence of stereotypical behavior such as hand flapping and body rocking, as well as by excessive preoccupation with certain objects, interests, or activities. Children with ASD exhibit patterns of social interaction and communication that are not consistent with their developmental age.
These patterns become apparent in the first few years of life and are generally lifelong challenges (Schieve, Rice, Boyle, Visser, & Blumberg, 2006), although with early and effective intervention, children can often learn new skills and improve existing ones. Prevalence| Studies have consistently documented a significant increase in the number of children identified with ASD across the United States over the last 15 years (Centers for Disease Control and Prevention, Maine Children Classified with Autism in 2009; Hollenbeck, 2004; Schieve, et al. , 2006). Special Education 2000-2008
While it is not known if this increase is attributa2231 ble to how ASD is identified and diagnosed, an 276% 1760 2500 2000-2008 actual increase in prevalence, or a combination 2000 of factors, the number of children identified with 1500 594 ASD in Maine and across the country has been 1000 500 growing. ASDs are now the second most common 0 developmental disability after mental retarda2000-01 2006-07 2008 tion (Centers for Disease Control and Prevention, 2009). A recent national survey of parents by Source: Department of Education, 2009 Page 15 U. S. Department of Health & Human Services
estimated that 1 in 91 children ages 3-17 years old were currently diagnosed with ASD (Kogen, et al. , 2009). This is a substantial increase from earlier estimates by the Centers for Disease trol of 1 in 150 children (Centers for Disease Control and Prevention, 2009). MaineCare Recicipients with ASD 2000-2008 3000 281% 2000-2008 1929 2451 2000 1000 643 0 Prevalence in Education| 2000 2006 2008 Education data echo this trend. Federal data Source: Department of Health and Human Services, gathered for the Individuals with Disabilities in 2009 Education Act (IDEA) indicate that the number of
Maine children ages 6-22 with ASD receiving Special Education services grew by 1672% between 1992 and 2003 (Hollenbeck, 2004). This is pared to a nationwide 834% increase in children ages 6-17 with ASD between 1994 – 2006 (Centers for Disease Control and Prevention, 2009). Maine Department of Education data shows this trend is likely to continue. Since 2000, the number of children in Maine schools classified with ASD has increased by 276% (Department of Education, 2009). Prevalence among Medicaid Recipients| Utilization data from the Medicaid program also shows an increase in the prevalence of ASD in Maine.
Between 2000 and 2008, the number of people with ASD who received MaineCare services increased by 281%. The significant growth of ASD in Maine? s systems of care underscores the need for planful resource and capacity development in order to adequately address the needs of this expanding population (Department of Health and Human Services, February 2009). WHAT IS EVIDENCE-BASED PRACTICE? | Evidence-based practice is the integration of the best available research evidence with clinical expertise in the context of patient characteristics, culture, and preference. – American Psychological Association
Page 16 Evidence-based practice has been a priority in the behavioral health and education fields over the past decade. The growing need for high-quality children? s behavioral health services has increased the demand for treatments that are proven to produce better outcomes (Levant, 2005; New Freedom Commission on Mental Health, 2003). The education system has also emphasized the use of evidence-based practice through legislation and policy such as No Child Left Behind (Coalition for EvidenceBased Policy, December 2003). For example, federal education policy calls for educators to address
the needs of students struggling with academics and behavior with interventions supported by research (Gresham, 2007). The emphasis on inter- Control condition: A comparison group of subjects in a research study that receive treatment as usual, or are placed on a waiting list for the treatment under study. Efficacy: The strength of the causal relationship between the treatment and its intended outcomes – Does it work? Effectiveness: An assessment of how well the treatment generalizes to real-world settings. Randomized Controlled Trial: A type of research study in which subjects are randomly selected to receive
the experimental intervention or a control condition. Single-Subject Design: A type of research that measures effects of an intervention at the level of the individual under carefully controlled conditions. ventions backed by research necessitates a common derstanding of evidence-based practice. Defining and coming to a common understanding of “evidence” is not simple (Chambless & Hollon, 1998; Chorpita, 2003). Our current understanding of evidencebased practice in behavioral healthcare is largely rooted in the work of American Psychological Association Task Forces (Task Force on Promotion and Dissemination of
Psychological Procedures, 1995; Task Force on Psychological Intervention Guidelines of the American Psychological Association, 1995). These Task Forces developed some of the first guidelines on research-informed practice (Chambless, et al. , 1996). The Committee has endorsed the American Psychological Association? s definition of evidence-based practice: Evidence-based practice is the integration of the best available research evidence with clinical expertise in the context of patient characteristics, culture and preference (APA Presidential Task Force on Evidence-Based Practice, 2006).
This definition acknowledges that evidence-based practice does not exist in a vacuum, and that research, clinical practice, and client values influence each other. Although the terms are often used interchangeably, the meanings of “evidence-based practice” and “evidencebased treatment” are distinct. Evidence-based treatment refers to specific treatments or intervention models that have proven effective for specific problems in certain circumstances by numerous scientific studies (Levant, 2005). Evidence-based practice bridges the science-to-practice gap by using research evidence to inform clinical practice in the context of the client?
s needs and environment. There are three core components to evidence-based practice: Best research evidence, clinical expertise and judgment, and client values and voice (APA Presidential Task Force on Evidence-Based Practice, 2006; Burns & Hoagwood, 2002). Best Research Evidence| The main element in the determination of research evidence is efficacy (Chorpita, 2003). Efficacy refers to the strength of the causal relationship between the treatment and its intended outcomes. In other words, does the treatment have the desired effect on the target behavior or skill? Efficacy is established Page 17 “Life Journey through
Autism: A Parent’s Guide to Research” is an informative guide for families. through well-designed research studies in which outcomes are observed and measured and compared to a no-treatment condition. The quality and type of a research study is an important factor in the evaluation of evidence. Research studies are conducted using different methods to varying levels of scientific integrity. Available at: Well-designed research is highly controlled, meaning that the www. researchautism. org families and children are carefully screened and selected to fit the parameters of the research, and administration of the treatme