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Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 - FY 2012)

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Effectiveness and Outcomes of Interventions

This section addresses subsections (7) and (8) of 399DD, which require: (7) "Information on the effectiveness and outcomes of interventions for individuals diagnosed with autism spectrum disorder, including by various subtypes, and other developmental disabilities and how the age of the child may affect such effectiveness," and (8) "Information on the effectiveness and outcomes of innovative and newly developed intervention strategies for individuals with autism spectrum disorder or other developmental disabilities." Information on the effectiveness and outcomes of interventions is provided by AHRQ, CMS, ED, DoD, HRSA, NIH, and SAMHSA.

Agency for Healthcare Research and Quality (AHRQ)

AHRQ is supporting several projects that are developing innovative intervention strategies:

  • The research and demonstration grant project, "Innovative Adaptation & Dissemination of CER Products," is developing, implementing, and evaluating highly interactive and engaging evidence-based interventions for disseminating information about treatments for autism and autism spectrum disorder to over 16,000 individuals in important clinician, parent and teacher audiences. The researchers are partnering with a social networking site for parents, public school districts and a state healthcare delivery system. The project's novel approaches to both content and delivery are expected to enhance the translation of new scientific evidence on ASD therapeutics in an accelerated format and its integration into practice and decision-making in families, the education system, the health care system and public policy.
  • "The Partnership for Sustainable Research and Dissemination of Evidence-based Interventions" is developing a highly effective, unified and sustainable high-throughput dissemination infrastructure with key partners in ASD care to improve the penetration and use of customized evidence based medicine products at health and educational systems, clinical practice, caregiver and family levels.
  • "The Computer-Assisted Autism Care (CAAC)" project expands the application of Dr. Downs' group's novel decision support system for implementing clinical guidelines in pediatric practice (CHICA) to include ASD screening, diagnosis, and treatment parameters, and to test its effectiveness in a randomized clinical trial. The primary outcomes of interest are a) the percent of children who are screened for ASD at the 18 or 24-month visit; and b) the number of guideline recommended activities/involvements that a child diagnosed with ASD receives.
  • AHRQ supported a systematic review published in 2011, "Therapies for Children with Autism Spectrum Disorders," conducted at the Vanderbilt Evidence-based Practice Center that reviewed evidence on therapies for children ages 2 to 12 with autism spectrum disorder (ASD). The reviewers focused on treatment outcomes, modifiers of treatment effectiveness, evidence for generalization of outcomes to other contexts, and evidence to support treatment decisions in children ages 0–2 at risk for an ASD diagnosis. The report concludes that medical interventions including risperidone and aripiprazole show benefit for reducing challenging behaviors in some children with ASDs, but side effects are significant. Some behavioral and educational interventions that vary widely in terms of scope, target, and intensity have demonstrated effects, but the lack of consistent data limits our understanding of whether these interventions are linked to specific clinically meaningful changes in functioning. The needs for continuing improvements in methodologic rigor in the field and for larger multisite studies of existing interventions are substantial. Better characterization of children in these studies to target treatment plans is imperative.45
  • AHRQ also supported a systematic review published in 2012, "Medications for adolescents and young adults with autism spectrum disorders," that focused on interventions for adolescents and young adults with ASD. Eight studies of medications were identified that focused on 13- to 30-year-olds with ASD and the reviewers concluded that four of the studies were of fair quality and that the strength of evidence was insufficient for all outcomes associated with medications tested in this population. However, the two available studies of the atypical antipsychotic medication risperidone in this age range were found to be consistent with the moderate evidence in children with ASD for treating problem behaviors, including aggression, and they found high strength of evidence for adverse events, including sedation and weight gain.46

Centers for Medicare & Medicaid Services (CMS)

In 2010, CMS issued a report entitled Autism Spectrum Disorders (ASD) Services Final Report on Environmental Scan, This link exits the Interagency Autism Coordinating Committee Web site (PDF - 2.44 MB) which describes the results of an extensive literature review conducted of the scientific evidence regarding the efficacy, effectiveness, safety, and availability of ASD-related Medicaid-funded services and supports that support daily living for people of all ages with ASD.47 The report includes service categories and descriptions, evidence-based services for children, emerging interventions, unestablished interventions, and the same categories for transitioning youth and adults. It also includes an intervention-specific analysis and addresses the economic impact of ASD. The scan highlighted the lack of research into effective services for adults, and interventions that can be implemented successfully in the community. CMS expended approximately $191,000 related to activities to complete the Environmental Scan.

Department of Defense (DoD)

Through the Autism Research Program (ARP), the Department of Defense has supported several projects aimed at exploring innovative strategies and interventions for individuals with ASD. Such studies include a randomized clinical trial conducted by Dr. Nancy Minshew (University of Pittsburgh) that assesses the effects of cognitive enhancement therapy for adults with ASD, and Dr. Evdokia Anagnoustou's work at the Bloorview Research Institute evaluating intranasal oxytocin as a treatment for children and adolescents (ages 10-17 years) with ASD.48, 49 Other interventions-related research supported by the Department of Defense include Dr. Michael Jarstfer's study (University of North Carolina at Chapel Hill) involving preclinical testing of novel oxytocin receptor activators in models of autism phenotypes and Dr. Georgianna Gould's identification of novel therapeutic targets to treat social behavior deficits in ASD (University of Texas, Health Science Center San Antonio). The ARP is also funding a study that aims to develop an internet-based parent training intervention for children with ASD (conducted by Dr. Brooke Ingersoll, Michigan State University), and a randomized, controlled trial of intranasal oxytocin administration as an adjunct to behavioral therapy for adults with ASD ages 18-30 years (Dr. John Gabrieli, Massachusetts General Hospital).50

Department of Education (ED)

Institute of Education Sciences (IES)

The National Center for Special Education Research (NCSER) funded a randomized controlled trial of LEAP (Learning Experiences –An Alternative Program for Preschoolers and Parents), a comprehensive intervention for preschool children with autism who are in inclusive classroom settings. In the LEAP intervention, typically-developing children learn to facilitate interaction with their peers with autism, preschool teachers use naturally-occurring classroom situations for incidental teaching, and parents receive skills training. The study found LEAP to be an effective intervention: Children with autism who experienced the full-scale LEAP intervention model, compared to children who experienced a reduced model, demonstrated more positive child outcomes in cognition and language, a reduction in symptom severity, growth in social skills, and a reduction in problem behavior. The study is published and meets What Works Clearinghouse standards of evidence without reservation. The investigators are currently conducting a follow-up study to examine whether these gains persist 3 years after the intervention ends.51

National Institute on Disability and Rehabilitation Research (NIDRR)

The Department of Education's National Institute on Disability and Rehabilitation Research (NIDRR), authorized by the Rehabilitation Act of 1973 (29 U.S.C. § 701), provides leadership and support for a comprehensive program of research related to the rehabilitation of individuals with disabilities including autism. NIDRR conducts comprehensive and coordinated programs of research and related activities to maximize the full inclusion, social integration, employment, and independent living of individuals of all ages with disabilities. Several NIDRR-supported grants are focused around technological interventions including video games to develop daily living skills, parent training via video-conferencing, virtual reality training and using animation of symbols to enhance understanding. Other grants are developing new training for both parents and children with ASD. Note that study populations do not necessarily include children. The following section describes NIDRR-funded interventions studies organized by year.

Department of Education NIDRR Interventions Studies

2007

A Means of Expression: Online Communication Assessment to Improve Outcomes for Individuals with Severe Disabilities: This link exits the Interagency Autism Coordinating Committee Web site Individuals with severe disabilities often experience complex communication disorders. Deficits in communication and language skills are so basic that they affect many other skill areas including social relationships, community integration, educational achievement and employment outcomes. The proposed Development project will adapt, refine, evaluate and market an innovative technological e-tool designed to provide appropriate assessment of communication skills for individuals with severe disabilities. The novel e-tool will harness the potential of an online communication assessment protocol to achieve immediate and meaningful individual-level outcomes in the form of cost effective and appropriate assessment, generation of appropriate educational and therapeutic goals, and monitoring of progress.

2008

Vocational Rehabilitation Service Models for Individuals with Autism Spectrum Disorders (VCU ASD Career Links): This link exits the Interagency Autism Coordinating Committee Web site VCU ASD Career Links conducts evidence-based research on vocational rehabilitation (VR) service models for individuals with ASD. The project is based at Virginia Commonwealth University (VCU) and is a collaborative initiative between VCU and the Virginia Department of Rehabilitative Services (DRS). The scope of research covers four areas: (1) the impact of intensive, community-based work experiences on the employment outcomes of youth with ASD; (2) the postsecondary school participation and ultimate employment of college students with ASD; (3) the impact of personal digital assistants (PDAs) on the employment outcomes of individuals with ASD; and (4) a longitudinal analysis of VR service delivery and employment outcomes among DRS clients with ASD.

Daily Living and Community Skills Video Game for Children with Developmental Disabilities: This link exits the Interagency Autism Coordinating Committee Web site This project develops and evaluates a simulation video game to teach children with developmental disabilities, including autism and intellectual disabilities, skills for independence. The project teaches chained tasks in an engaging and effective game format. This system provides an innovative and inexpensive way to increase opportunities for instruction while providing correction procedures, giving multiple exemplars, monitoring progress, and including clips from each student's community. Project goals include: (1) to expand on the successful techniques demonstrated in preliminary studies to create a fully-functional game with 24 skills, and (2) to verify through a single subject design, specifically multiple probes across behaviors, that the simulation video game alone teaches the skills to 24 children with developmental disabilities in elementary and middle school.

2009

Experimental Evaluation of the Online and Applied System for Intervention Skills (OASIS) Training Program Using Video-Conferencing for Parents of Children with an Autism Spectrum Disorder: This link exits the Interagency Autism Coordinating Committee Web site This project evaluates the Online and Applied System for Intervention Skills (OASIS) Training Program, a program that uses a Research-to-Practice Outreach Training model to teach parents of children with an ASD how to implement empirically-based interventions with their children. The evaluation of the OASIS program includes two studies. The purpose of Study 1 is to: (1) conduct a between-group experimental analysis of the effectiveness of the final iteration of the OASIS training program developed during a previously funded development project, and (2) conduct a within-subject analysis of the effects of OASIS on parent knowledge and skill fluency with implementation of behavioral techniques with their child, family quality of life, and child language and social engagement post treatment and during follow-up measures. The purpose of Study 2 is to assess the long-term impact of the OASIS program on parents and children who previously completed training.

The Effects of a Bicycle Training Intervention on Health, Physical Activity, Sleep, and Community Participation in Youth with Down Syndrome and Autism Spectrum Disorders: This link exits the Interagency Autism Coordinating Committee Web site This 3-year study utilizes a randomized trial design to determine the effects of an individualized bicycle training intervention on functional performance, time spent in moderate to vigorous physical activity, patterns of sleep, and community participation and integration of youth with Down Syndrome (DS) and autism spectrum disorder, aged 9 to 18 years.

2010

Do Animations Facilitate Symbol Understanding in Children with Autism? This link exits the Interagency Autism Coordinating Committee Web site This project investigates the use of animation to facilitate the understanding of graphic symbols for verbs and prepositions in children with autism and/or pervasive developmental disorders - not otherwise specified, and if successful, which animated graphic set is most effective. This project designed two studies involving the widely used Picture Communication Symbols (PCS) and the newly designed ALP Animated Graphics Set to gather benchmark data on the effects of animations versus static images for verbs and prepositions in preschoolers without disabilities across three age groups.

Virtual environment for social information processing (VESIP): This link exits the Interagency Autism Coordinating Committee Web site This project creates an immersive, theory-based tool that can assess, and eventually train, social information processing (SIP) skills in children with ASD. The VESIP system provides a significant improvement over existing measures of social skills in the following ways: (1) providing a standardized, computer-delivered form that reduces training requirements and scoring time, and increases comparability across populations; (2) theory-based assessments designed to pinpoint specific deficits in the SIP process for later individualized intervention; and (3) building an immersive, easily-customizable, game-like interface that is more engaging leading to greater ecological validity and a more accurate assessment of real-world skills.

2011

System for Intervention Skills (OASIS) Training Program with Parents of Children with an Autism Spectrum Disorder: This link exits the Interagency Autism Coordinating Committee Web site This project seeks to address the access and training deficit for Spanish-speaking parents of children with ASD by adapting the Online and Applied System for Intervention Skills (OASIS) Training Program for use with parents who speak Spanish and have a child with an ASD to teach them how to implement empirically-based interventions with their child. During training, parents practice the techniques discussed in that week's online tutorials with their child while receiving guidance and immediate feedback from a bilingual clinician with a background in behavior analysis and trained to implement OASIS. Program effectiveness is evaluated based on: parental knowledge and skill fluency, child adaptive behaviors, and reported family quality of life. In addition, families complete exit surveys to elicit feedback regarding program improvement and any problems they experienced, particularly regarding cultural and/or language barriers experienced.

Sustainable Implementation of Family-Centered Transition Planning for Young Adults with Autism Spectrum Disorders: This project develops a sustainable process for implementing a Family-Centered Transition Planning model for youth and young adults with autism spectrum disorder. Based on research demonstrating the effectiveness of Family-Centered Transition Planning in increasing student and parent expectations for adult life, student career decision-making, and student participation in employment and postsecondary education, this project develops an implementation package to embed this method of independent transition planning into the existing service and funding system on a long-term basis across multiple states.

Health Resources and Services Administration (HRSA)

Between 2010–2012, the HRSA Maternal and Child Health Bureau Autism Intervention Research program supported three research networks and 25 R40 grants. The MCH Autism Intervention Research Network on Physical Health (AIR-P) and the MCH Autism Intervention Research Network on Behavioral Health (AIR-B) have been conducting studies on ASD interventions since they were initially funded in FY 2008. A third Network, the Developmental-Behavioral Pediatrics Research Network (DBPNet) was funded in 2010 to support multidisciplinary research, the translation of research to practice, and training for a new generation of developmental behavioral pediatrics researchers. The R40 grant programs, which include the Autism Intervention Secondary Data Analysis Studies (SDAS) Program and the MCH Autism Intervention Research Program, support research on evidence-based practices for ASD interventions. Generating evidence of the effectiveness and outcomes of interventions for individuals with ASD is still evolving, as researchers continue to develop and test valid and reliable measurement tools. To address the need for psychometrically sound measurement tools that are sensitive to changes in core ASD symptoms, the AIR-P tested the reliability of the Autism Impact Measure (AIM). Results indicated that the AIM is a valid and reliable tool for measuring changes in core areas of social interaction, communication, and repetitive behavior as a result of medical treatments in children with ASD. The study was published in the Journal of Autism and Developmental Disorders in June 2013.52 Although this study does not provide direct information on the effectiveness of a particular intervention, it does provide researchers with a means to reliably assess ASD treatment outcomes.

HRSA Autism Intervention Research Network on Physical Health (AIR-P) Research Studies

Year Initiated Study Title Brief Description
2009 Diet and Nutrition in Children With Autism Spectrum Disorders: An Autism Treatment Network Collaborative Study This study investigated the food and supplement intake of children and adolescents with ASD. Researchers examined the correlation between nutritional status and medical and behavioral symptoms, with the goal of developing a nutritional screening tool and educational materials for nutritional counseling in primary care settings.
2009 Parent-Based Sleep Education Program for Children With Autism Spectrum Disorder The objective of this study was to determine the most effective education/behavioral intervention for addressing insomnia for children with autism. Investigators provided training in the use of various behavioral treatments to promote sleep.
2010 Bone Mineral Density in Children With Autism Spectrum Disorders This cross-sectional study aimed to determine whether 20 boys ages 8 to 14 years old with autism have lower bone mineral density than age-matched controls, and explored risk factors for low bone mineral density.
2010 Defining the Relation of Sleep Disturbance in Autism Spectrum Disorder to Psychiatric and Behavioral Comorbidities The goal of this cross-sectional study was to provide a foundation for future intervention studies that can inform treatment guidelines. Investigators used the Autism Treatment Network registry to define the psychiatric and behavioral comorbidities associated with disordered sleep across the spectrum of age, IQ, and functional status.
2010 Markers of Iron Status and Metabolism in Children With Autism Spectrum Disorders The objective of this cross-sectional, observational study was to evaluate associations among iron intake, iron status, GI symptoms, and novel markers of iron status, iron absorption, and inflammation in children ages 2 to 11 years old.
2010 Prevalence of Creatine Deficiency Syndromes and Genetic Variability in Creatine Metabolism in Children With Autism Spectrum Disorder – A Pilot Study The study objective is to determine prevalence of CDS in 600 children with autism and to assess the interaction of genotypic variability of the three known genes involved in creatine metabolism with the autism phenotype.
2011 Constipation and Toilet Training in Autism This study focused on the development of an effective behavioral treatment protocol to complement and enhance the medical treatment of constipation in children with ASD. Investigators are examining a novel wireless moisture alarm to promote daytime toileting in children with ASD. This study uses the wireless alarm to facilitate more rapid acquisition of toileting skills.
2011 Epileptiform Discharges and its Relation to Cognition and Behavior in Children With Autism Spectrum Disorders The objective of the study is to test putative links between interictal epileptiform discharges, sleep, and behavior/cognition in children ages 3 to 7 years old.
2011 Maternal Cholesterol and Autism The objective of this pilot study is to characterize maternal sterol metabolism in mothers of children with autism, including mothers at risk to have another autistic child, in part to evaluate the rationale of cholesterol supplementation on the incidence of autism in children.
2011 The Autism Impact Measure (AIM): A New Tool to Measure Treatment Outcome in ASD The objective of this study was to determine reliability and validity of a new clinical tool (AIM) to measure changes in core areas of social interaction, communication, and repetitive behavior as a result of medical treatments in children with ASD. Study results provided evidence that the AIM shows promising psychometric properties, with excellent internal consistency, test-retest reliability, inter-rater reliability, and relations to measures of related constructs.
2011 The Study of Toddlers With Autism and Regression (STAR) Protocol – Screening for Treatable Disorders and Biomarkers of Inflammation and Immune Activation in the Plasma and CNS The objective of this study is to determine if children ages 18 to 36 months have increased signs of systemic inflammation and oxidative stress compared to children with autism and no regression.
2012 Evaluating the Impact of Emergency Room Services for Children and Adolescents With Autism Spectrum Disorders This project is a 2-year, multisite research effort, examining emergency room accessibility and experience among children and adolescents with ASD.
2012 Evaluation for Functional Causes of Gastrointestinal Symptoms in Children With ASD This 1-year study will gather pilot data to explore mechanisms associated with functional gastrointestinal disorders in children with ASD.
2012 Iron Treatment of Sleep Disorders in Children With Autism Spectrum Disorder This 3 year, 2-phase study is designed to evaluate the effect of iron supplementation on restless legs syndrome and periodic limb movement of sleep. The first phase is an open label trial of oral elemental iron for children with ASD and low ferritin levels. The second phase is a randomized placebo-controlled trial of oral elemental iron treatment for insomnia in children with ASD and low ferritin levels.
2012 Relationship Between Gastrointestinal Disorders and Stress Reactivity, Immunity, and Blood Serotonin in Autism Spectrum Disorder This 2-year, multisite research will examine factors related to immune markers and serotonin and how stress response, gastrointestinal disorders, immunity, and the serotonin system interact in autism.
2012 Treatment of Overweight Induced by Antipsychotic Medication in Young People With ASD The objective of this 3-year study is to conduct a 16-week, double blind, placebo-controlled randomized trial of fixed dose metformin to decrease weight gain associated with atypical antipsychotic medication in children with ASD.

Table 19. Autism Intervention Research Network on Physical Health (AIR-P) Research Studies.

The AIR-P has also released a series of toolkits through the Autism Speaks Web site, providing intervention information on such topics as medication decision making for children with ASD, sleep, and toileting. Table 20 includes a complete list of toolkits available for download from the web site.

HRSA Autism Intervention Research Network on Physical Health (AIR-P) Tool Kits

ATN/AIR-P Tool Kit* Release Date Number of Cumulative Downloads**
Sleep Quick Tips for Parents February 2013 186
Applied Behavioral Analysis June 2012 8,780
Introduction to Behavioral Health Treatments June 2012 4,960
Toileting June 2012 6,617
Dental Provider's Guide February 2012 3,234
Sleep Parent Booklet February 2012 7,458
Visual Supports November 2011 13,282
Blood Draws – Guide for Parents September 2011 2,936
Blood Draws – Guide for Providers September 2011 1,456
Medication Decision Aid September 2011 6,891

Table 20. Autism intervention research network on physical health (AIR-P) Tool Kits.
*These are available for download at http://www.autismspeaks.org/family-services/tool-kits.
**As of May 17, 2013.

The AIR-B Network convened a Technical Expert Panel to develop consensus-based guidelines on nonmedical interventions that address cognitive function and core deficits in children with ASD. Interventions that have shown efficacy include Applied Behavioral Analysis (ABA), integrated behavioral/developmental programs, the Picture Exchange Communication System This link exits the Interagency Autism Coordinating Committee Web site (PDF - 187 KB), and various social skills interventions. A recently completed AIR-B study examined whether evidence-based interventions tested in clinical settings with high-resource families would be equally effective with less advantaged participants in the community. Results showed that hands-on interventions for parents conducted in the homes of underserved families are more effective at improving core deficits than information-only interventions provided to parents. The study did not find effects of child chronological age for children ages 2–5 years with a clinical and research confirmed diagnosis of autism. The intervention was as effective with older children as with younger children.

HRSA Autism Intervention Research Network on Behavioral Health (AIR-B) Research Studies

Year Initiated Study Title Brief Description
2008 Early Intervention Protocol: Parent Mediated Intervention for Low-Resourced Families of Preschoolers With Autism and Early Intervention Service Utilization Among Underserved Children with Autism This study aimed to explore whether evidence based interventions focused on core deficits carried out in clinical settings with high-resource families would be as effective with less-advantaged participants in the community.
2009 Social Skills at School for Underserved Children with Autism The outcome of the study will determine if working through parents is effective enough to change school peer interactions and friendships or if direct peer-mediated instruction at school is necessary. This study examines an intervention for underserved children with autism. The purpose is to assess a social-skills intervention among 150 high-functioning ASD elementary school children who are in general education and who do not often receive school-based services.
2010 Teen-Based Social Skills Intervention in Schools This study involves an upward extension of the Peer Social Skills/Relationship Intervention at School study to underserved middle school and high school students with ASD. The project is comparing SKILLS to ENGAGE adapted for middle school and high school fully included teens with ASD. It will provide the first randomized controlled test of social skills interventions delivered at school for teens with ASD.
2011 AIR-B Web-Based Social Skills Intervention This project involved a Web-based social-skills intervention (content developed by a junior investigator at KKI) and a Web-based format implemented by a junior investigator at UCLA. Feedback from piloting via IAN network (family-based Web network) suggested the intervention content needed major revision to be acceptable by children. This project is currently undergoing a different format that involves a "choose your adventure" format for illustrated stories that are delivered via an iPad. One storyboard is completely written and illustrated and is undergoing pilot testing. Two other storyboards are written and will be illustrated depending on feedback from the pilot.
2011 Autism Intervention Research in Behavior – Deployment in Elementary Schools This project aims to move evidence-based psychosocial interventions for children with ASD from research to practice settings, focusing on large, urban school districts. The current study is an initial step toward moving evidence-based psychosocial interventions for children with ASD from research to practice settings, focusing on large, urban school districts.

Table 21. Autism Intervention Research Network on Behavioral Health (AIR-B) Research Studies.

HRSA Autism Intervention Research Network on Behavioral Health (AIR-B) Tools

Name Brief Description
Playground Observation of Peer Engagement (and Teen Observation of Peer Interaction) An observation measure for collecting peer engagement of children at school (used across multiple studies and by many other investigators now).
Social Networks Survey A method for collecting peer engagement and friendship data from children in classrooms. Computer-based application that develops social network maps. Available for use by other researchers.
Active Engagement Rating Scale Rating scale for assessing how engaged children are with others in natural environments (currently used in our home observations of preschoolers across daily routines)
ADOS-Change Developed to assess subtle changes in core deficits similar to what the ADOS measures but using other situations such as mother-child interactions. AIR-B data is currently being used to validate measure.
Pragmatic Rating Scale A briefer rating scale applied to any child interaction with others. Currently undergoing validation using AIR-B data of peer interactions of verbal children with ASD.

Table 22. Autism Intervention Research Network on Behavioral Health (AIR-B) Tools.

A completed R40 project assessed a specially designed intervention content and parent training delivered via home-based and center-based (classroom) intervention. The study compared the impact of the home-based versus the center-based intervention on the social, communication, and cognitive functioning of 2-year-old toddlers with ASD. Both interventions improved the participating toddlers' nonverbal cognition and language (receptive and expressive) functioning. Children in the center-based condition showed more developmentally comprehensive gains across nonverbal cognitive, language, and social domains. Gains from pre- to post-intervention were comparable for children from minority and non-minority families (controlling for SES) despite the fact that the minority children entered the treatment with greater impairment in communication functioning.

Another R40 study evaluated the effectiveness of Problem Solving Education (PSE), an evidence-based behavioral intervention, on the burden of depressive symptoms, parenting stress, and social functioning among English- and Spanish-speaking mothers who have children younger than 6 years old with ASD. The study showed statistically significant differences between intervention and control group participants, with intervention group mothers having fewer episodes of clinically significant depressive symptoms, assessed every 6 weeks over 9 months of follow-up.

One R40 study This link exits the Interagency Autism Coordinating Committee Web site (PDF - 778 KB) evaluated the effectiveness of a family-centered transition planning intervention for 16- to 18-year-old high school students with ASD. The goal of the intervention was to empower families and transitioning students to take a leading role in the process of transition planning. The intervention effectively produced significant gains in student expectations, parent expectations, student self-determination, and vocational decision-making.

To address sleep problems that are common among children with ASD and quite disruptive to families, the AIR-P piloted an innovative intervention designed to help parents teach their children with ASD to become better sleepers.53 In response to previous studies that found that printed informational materials had limited effectiveness in helping parents foster better sleep patterns in their autistic children as compared to a control group, this study tested the effectiveness of physician-led parent education workshops that provided training in the use of various behavioral treatments to improve their children's sleep. Investigators found that the workshops were effective in improving subjective and objective measures of sleep and sleep habits. These results indicate that group trainings may offer opportunities to reach more families with an effective, evidence-based intervention. Another AIR-P study is examining a novel wireless moisture alarm to promote daytime toileting in children with ASD. As part of this pilot study, investigators will develop training manuals for clinicians and parents.

HRSA Autism Intervention Research Network on Physical Health (AIR-P) Clinical Practical Guidelines

Topic Area Overview Publication
Managing Sleep Behavior This report describes the development of a practice pathway for the identification, evaluation, and management of insomnia in children and adolescents who have autism spectrum disorder (ASDs). The Sleep Committee of the Autism Treatment Network (ATN) developed a practice pathway, based on expert consensus, to capture best practices for an overarching approach to insomnia by a general pediatrician, primary care provider, or autism medical specialist, including identification, evaluation, and management. A field test at four ATN sites was used to evaluate the pathway. In addition, a systematic literature review and grading of evidence provided data regarding treatments of insomnia in children who have neurodevelopmental disabilities. Malow, B.A., Byars, K., Johnson, K., Weiss, S., Bernal, P., Goldman, S.E., …Glaze, D.G. (Sleep Committee of the Autism Treatment Network). (2012). A practice pathway for the identification, evaluation, and management of insomnia in children and adolescents with autism spectrum disorder. Pediatrics, 130(Supplement 2), S106-24
Toileting Behavior The Gastroenterology Committee of the Autism Speaks Autism Treatment Network (ATN), a multisite consortium of centers dedicated to improving standards of medical care for children with ASDs, guided the development of the constipation algorithm through expert opinion and literature review. The algorithm was finalized based on results of field testing by nongastrointestinal, ATN autism medical specialists at four ATN sites. A systematic review and grading of the literature pertaining to constipation and children with ASDs was also performed. Consensus among the ATN Gastroenterology Committee identified that in children with ASDs, 1) subtle or atypical symptoms might indicate the presence of constipation; 2) screening, identification, and treatment through a deliberate approach for underlying causes of constipation is appropriate; 3) diagnostic-therapeutic intervention can be provided when constipation is documented; and 4) careful follow-up after any intervention be performed to evaluate effectiveness and tolerance of the therapy. Literature review revealed limited evidence for the clinical evaluation or treatment strategies of children with ASD and constipation. Furuta, G.T., Williams, K., Kooros, K., Kaul, A., Panzer, R., Coury, D.L., & Fuchs, G. (2012). Management of constipation in children and adolescents with autism spectrum disorder. Pediatrics, 130(Supplement 2), S98-S105.
Treating Children and Adolescents With ASD and ADHD Hyperactivity, impulsivity, and inattention (referred to as "ADHD [attention-deficit/hyperactivity disorder] symptoms") occur in 41% to 78% of children with ASDs. These symptoms often affect quality of life, interfering with learning or interventions that target primary ASD symptoms. This practice pathway describes the guidelines for evaluation and treatment of children and adolescents with ASD and comorbid ADHD symptoms. Current research in this area is limited, and, therefore, these recommendations are based on a systematic literature review and expert consensus in the Autism Speaks Autism Treatment Network Psychopharmacology Committee. For children for whom medication is being considered to target the ADHD symptoms, the medication choice pathway provides guidance on the selection of the appropriate agent based on a review of available research, assessment of specific advantages and disadvantages of each agent, and dosing considerations. These recommendations provide a framework for primary care providers treating children who have ASD and ADHD symptoms. Our systematic review of the current evidence indicates the need for more randomized controlled trials of the medications for ADHD symptoms in ASD. There will also be a need for studies of the effectiveness of these practice pathways in the future. Mahajan, R., Bernal, M.P., Panzer, R., Whitaker, A., Roberts, W., Handen, B., Hardan, A., …Veenstra-VanderWeele, J. (Autism Speaks Autism Treatment Network Psychopharmacology Committee). (2012). Clinical practice pathways for evaluation and medication choice for attention-deficit/hyperactivity disorder symptoms in autism spectrum disorder. Pediatrics, 130(Supplement 2), S125-38.
Treatment of Anxiety Symptoms in ASD In progress Peer-reviewed publication
Treatment of Irritability Symptoms in ASD In progress Peer-reviewed publication
EEG Testing in ASD In progress Peer-reviewed publication

Table 23. Autism Intervention Research network on Physical Health (AIR-P) Clinical Practice Guidelines.

The AIR-B is continuing research on an innovative, Web-based social skills intervention available for both desktop computers and the iPad. The Network aims to deliver the program to children with ASD at home or in the school setting and to test for generalization on the playground or in the school cafeteria.

Two active R40 studies are testing new and innovative approaches to improve access to ASD treatment for families in rural and remote areas. One study, "Behavioral Treatment through In-Home Telehealth for Young Children With Autism," This link exits the Interagency Autism Coordinating Committee Web site (PDF - 210 KB) is evaluating the effectiveness of using in-home telehealth to deliver an empirically validated behavioral treatment for challenging behavior to families in underserved areas of rural Iowa. Another study, "Efficacy of the Home TEACCHing Program for Toddlers with Autism," is evaluating an innovative home-based version of the TEACCH (Treatment and Education of Autistic and Communication-handicapped CHildren) program, which has been adapted to be more developmentally appropriate for toddlers with ASD, and more responsive to needs of families in rural communities.

Another completed R40 project This link exits the Interagency Autism Coordinating Committee Web site aimed to improve access to evidence-based treatment for families of youth with ASD who live far from specialty medical centers. This study tested the feasibility and potential efficacy of using a videoconferencing program to connect families of psychiatrically complex youth with ASD, living in rural Colorado, with clinical psychologists who specialize in treatment of anxiety and coping problems in youth with ASD. Telehealth delivery of the intervention was found to be acceptable and feasible with promising preliminary efficacy for youth self-report of fears and anxieties and parent report of impact on family.

National Institutes of Health (NIH)

NIH has undertaken a number of activities to address the effectiveness and outcomes of interventions for individuals diagnosed with ASD. The types of intervention studies are diverse and examples include: developing new treatments that improve autism symptoms, language development, and social behaviors in children; computerized training programs for adults with autism to improve their ability to recognize and process facial expressions; jobs programs that help high school graduates who have ASD; and providing rapid ways to test new or repurposed compounds for their potential to treat ASD.

Through NIH's support of the Autism Center of Excellence (ACE) program, a number of the centers and networks funded through FY 2012-FY 2017 involve projects that develop new and innovative treatments and services for children with ASD. For example, investigators are conducting a multi-site randomized clinical trial to determine the effectiveness of the Early Start Denver Model (ESDM), a behavioral intervention designed to improve language and communication development of young children with ASD. An earlier study indicated the ESDM intervention can significantly increase IQ scores, and improve communication, motor, and daily living skills in children with ASD.54 In a related study, 18- to 30-month-old children with autism who participated in ESDM showed brain activity associated with improvements in social behavior.55

Three separate NIH-supported intervention studies highlight research geared toward improving the social skills of children and adults with ASD. The first study found that programs incorporating same-age peers not affected by ASD in social skills development were a more successful intervention approach than programs that focus on children with ASD alone.56 A second study found that targeting the core social deficits of ASD in early intervention programs yielded sustained improvements in social and communication skills even in very young children with ASD.57 The third study showed that an intervention in which adults actively engaged the attention of preschool children with ASD by pointing to toys and using other gestures to focus their attention results in a long-term improvement in language skills.58 Treatment innovations are also being pursued for adults on the autism spectrum. Face recognition is a social impairment that impacts both children and adults with autism. Using a computerized training program, investigators demonstrated that adults with ASD can gain expertise in face processing and recognition skills.59

NIH-funded researchers recently demonstrated that a subset of children correctly diagnosed with ASD at a young age eventually improved to the point of "optimal outcome," or losing their ASD diagnoses later in life. The results suggest that the children who eventually lost their diagnosis had fewer social deficits than the mild autism group in early childhood, but had other symptoms, related to communication and repetitive behavior, that were as severe as in the latter group.60

Early detection will likely be an essential component in reducing the level of disability associated with ASD through early intervention. Recent science advances from the Infant Brain Imaging Study (IBIS), supported through the NIH ACE program, could lead to earlier and improved diagnostic methods. One study showed that patterns of brain development in the first 2 years of life are distinct in children who are later diagnosed with ASD compared to their unaffected siblings. The researchers suggest that certain brain circuits developed faster in the children who did not have ASD. In another study, researchers reported that at age 7 months, children who are later diagnosed with autism take a split second longer to shift their gaze during a task measuring eye movements and visual attention than do typically developing infants of the same age. They showed that this measurable delay could be accounted for by differences in the structure and organization of actively developing neurological circuits of a child's brain. Ultimately, differences in gaze detected at 7 months of age might help doctors identify children likely to develop autism later on.

Once diagnosed, early intervention will likely lead to better health outcomes for children with ASD and other developmental disabilities. NIH has undertaken a number of activities to address the urgent need for innovative and effective intervention strategies, including biomedical interventions. Investigators supported by an ACE network are examining whether a nasal spray of oxytocin, a hormone that influences social behavior, can improve social interaction and communication in children with ASD. The 5-year study will determine if oxytocin improves social functioning in ASD, evaluate the medication's safety in children, and identify factors that influence a child's response to oxytocin. Fragile X syndrome (FXS) is the most commonly inherited cause of intellectual disability and individuals with FXS often exhibit traits that resemble autism. NIH-supported work provided an understanding of the root cause of FXS, allowing researchers to take a precision approach in trying to correct it.61 This work is the basis for ongoing NIH-funded early clinical trials of a compound that may correct a central neurochemical defect underlying Fragile X syndrome and alleviate symptoms of ASD. Finally, a clinical trial of donepezil—a medication typically used for Alzheimer's disease–demonstrated enhanced REM sleep in young children with autism. The investigators are currently developing a randomized controlled study using donepezil to target symptoms of ASD.

To hasten the development of new potential drug candidates to address ASD symptoms, NIH has launched the Fast-Fail Trials in Autism Spectrum Disorders (FAST-AS) initiative. Given that over 95 percent of compounds fail during the clinical phases of development - a fact not fully apparent when looking at the published literature which is more focused on positive results - success may require rapid failures in order to conserve resources by moving quickly to the next candidate ("fast-fail"). This initiative's goal is to implement an experimental medicine paradigm of "fast fail" Proof of Clinical Mechanism and Proof of Concept trials to quickly test and analyze novel compounds and identify molecular and/or clinical targets for treating ASD.

Substance Abuse and Mental Health Services Administration (SAMHSA)

SAMHSA also supports the Behavioral Health Electronic Clinical Quality Measure Development project, which is developing, testing, and validating electronically-specified clinical quality measures related to primary care screening for depression, suicide, drug use, alcohol use, trauma, and autism, for potential inclusion in the Centers for Medicare & Medicaid Services (CMS) Electronic Health Record (EHR) Incentive Program. The project is being coordinated with the Office of the National Coordinator for Health Information Technology (ONC) and CMS measurement development, testing and validation activities. The project aims to develop consensus on the issues surrounding clinical quality of care measures, define additional quality measures that need to be developed to support quality care, complete technical and electronic specifications, and perform field testing when necessary. These measures may be used to facilitate the measurement of disparities in early diagnosis and screening. Funding: $450,000 in FY 2011 awarded in FY 2012.

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NIH publication No. 14-8012

Copyright Information
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.

Suggested Citation
U.S. Department of Health and Human Services, Office of Autism Research Coordination, National Institutes of Health (On behalf of the Office of the Secretary). Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 – FY 2012). February 2014. Retrieved from the Department of Health and Human Services Interagency Autism Coordinating Committee website at: http://iacc.hhs.gov/reports/reports-to-congress/FY2010-2012/index.shtml

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