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Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research – 2013 Update

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Question 5: Where Can I Turn for Services?

Introduction

Aspirational Goal: Communities will access and implement necessary high-quality, evidence-based services and supports that maximize quality of life and health across the lifespan for all people with ASD.

The 2009 IACC Strategic Plan, which was revised in 2010 and 2011, delineated nine objectives related to Question 5, which include four short-term objectives and five long-term objectives to address gaps in current policy and services research that will benefit the autism community. These objectives call for studies and demonstration projects addressing issues such as: ways to improve access to services in traditionally underserved populations, developing successful models for self-directed care, evaluating how best to coordinate services across multiple state and local agencies, studying and improving health and safety and reducing mortality in individuals with ASD, implementing and disseminating interventions that have been proven efficacious, and evaluating cost effectiveness of services. The total recommended budget was $71 million across all nine objectives for this question.

Progress Toward Strategic Plan Objectives

The 2011-2012 IACC Portfolio Analysis reviewed projects funded by both government agencies and private foundations from 2008 – 2012. Based on this analysis, the cumulative investment from 2008 – 2012 in projects categorized to Question 5 was $124 million. Approximately 70 percent of the investments assigned to Question 5 were in gap areas addressed by the Question 5 objectives, while 30 percent were in areas covered by the core/other category, which may represent areas of ongoing, mainstream efforts or emerging research areas that have not been captured in the IACC Strategic Plan objectives.

Of the nine specific objectives under Question 5, three objectives addressing access to services and implementation of evidence-based interventions in diverse populations, and evaluation of training for service and support providers, met or exceeded the recommended budget and fulfilled the recommended number of projects. The objective regarding studies to address dental health issues of people with ASD met the recommended number of projects, but the projects were done with less funding than was projected in the budget recommendation and only covered dental services for children. Four specific objectives were far below the recommended budget and number of projects. These include objectives regarding evaluation of state and local coordination of community-based services, projects to examine health, safety, and mortality issues, testing evidence based services for community living settings, and evaluation of programs to increase health and safety. Additionally, one objective, on studies to examine how self-directed community-based services impact individuals across the ASD spectrum, did not have any funding in the past 2 years, though there were some projects in this objective category in earlier years. The committee felt, however, that even with the earlier projects, they did not adequately cover some of the key community-based services, such as those related to employment and housing.

Overall, considerable progress was made in some areas of the services research field related to these nine Question 5 objectives. A growing body of research examines the best strategies to implement evidence-based autism interventions in diverse community settings—especially schools. Large-scale randomized implementation and effectiveness trials have shown that, with appropriate organizational and individual supports, evidence-based interventions developed in university-based research settings can be implemented with fidelity in community settings and result in more positive outcomes than standard community care.1 Implementation science (the study of approaches to delivery of services) is developing within the autism field. It will be important for the autism field to rapidly assimilate new developments from the general implementation science field, such as methods for addressing organizational, provider and consumer level factors to improve services and outcomes, in order to optimize delivery of autism interventions in community settings.

In a related development, the National Professional Development Center on Autism Spectrum Disorders, supported by the U.S. Department of Education (ED), now provides community education and service providers with free information on evidence-based practices for children and adolescents with ASD. The center has also made great progress on the development of web based training programs This link exits the Interagency Autism Coordinating Committee Web site for the dissemination of early educational intervention best practices to states. This provides an opportunity for research examining the effects of such resources on implementation in both rural and urban settings. In the medical arena, with support from Autism Speaks and the Health Resources and Services Administration (HRSA), a wide range of physician and parent tool kits,2 and the first empirically-supported physician guidelines for the treatment of gastro-intestinal conditions,3, 4 sleep conditions,5, 6 and attention deficit hyperactivity disorder (ADHD)7, 8 are now available, defining standards of care and increasing the ability of practitioners to appropriately treat these conditions in service delivery settings. In the realm of safety issues, the Department of Education issued a resource document for restraint and seclusion in 2012 that provided guidance to schools on limiting restraint and seclusion while promoting positive behavioral supports and interventions as a safe and effective alternative.9 Additionally, the first research studies of ASD-associated wandering have been done10, 11 and progress has been made by the National Autism Association This link exits the Interagency Autism Coordinating Committee Web site in developing toolkits This link exits the Interagency Autism Coordinating Committee Web site and information for preventing wandering and by the Department of Justice and the National Center for Missing and Exploited Children This link exits the Interagency Autism Coordinating Committee Web site on quickly and appropriately responding to ASD wandering incidents to reduce injury and mortality.12, 13

The passage and implementation of the Affordable Care Act (ACA) creates the opportunity for states to include behavioral treatments for individuals with ASD as part of their essential health benefits. This determination was based on the growing body of evidence supporting the efficacy of behavioral interventions and provides an example of how scientific advances can support policy changes that benefit the community. The extent to which states will include behavioral treatment coverage within their plans and the effects of the adoption of these benefits on treatment and outcomes remains unclear. Additionally, more than 30 States have explicitly listed autism as a related condition or explicitly included autism in the definition of people served under the State's Medicaid Home and Community Based Services waiver for people with intellectual disabilities, and 10 states offer waivers that specifically cover Applied Behavioral Analysis (ABA). Similar policy changes have been taking place in the military. As of July 25, 2013, TRICARE, the medical benefit plan of the military health system, extended coverage of ABA to non-active duty family members in addition to active duty family members that previously had coverage for this service.

Since 2010, the Centers for Medicare & Medicaid Services (CMS) has undertaken several activities that have provided new information about ASD services available in the community. In 2010, CMS issued a report entitled Autism Spectrum Disorders (ASDs) Services Final Report on Environmental Scan This link exits the Interagency Autism Coordinating Committee Web site (PDF - 2 MB) that describes the results of an extensive literature review of the scientific evidence regarding the efficacy, effectiveness, safety, and availability of ASD-related services and supports, including those funded through federal sources, that support daily living for people of all ages with ASD.14 In 2011, CMS also issued a report on a nine-state study entitled, Report on State Services to Individuals with Autism Spectrum Disorders (ASD) (PDF - 884 KB), which assessed the implementation of evidence-based promising practices through the lens of state experience, summarizing the current state of ASD-related services covered by Medicaid and other sources in each of the nine states.15 The report describes the types of services and supports provided by state and local governments, the sources of funding for programs, and the policy, staffing and implementation issues that states and localities encounter in the administration of programs that serve people with ASD. CMS also issued a report, Autism Spectrum Disorders (ASD): State of the States of Services and Supports for People with ASD (PDF - 2 MB), in 2014. This study assessed existing state programs and supports for families living with ASD in 50 states and the District of Columbia, providing a comprehensive view of services that received support from various federal sources and were made available through state programs across the country.

Internationally, there is also increased focus and funding aimed at monitoring and improving access to services for people with ASD. In 2012, the United Nations (UN) General Assembly unanimously passed a resolution, "Addressing the socioeconomic needs of individuals, families and societies affected by autism spectrum disorders, developmental disorders and associated disabilities," This link exits the Interagency Autism Coordinating Committee Web site calling on governments to monitor and report as well as improve access to healthcare, education, training, and intervention programs for persons with ASD and other developmental disabilities.16 In 2013, the executive board of the World Health Assembly, governing body of the World Health Organization (WHO), adopted the resolution "Comprehensive and Coordinated Efforts for the Management of Autism Spectrum Disorders."17 The resolution was co-sponsored by more than 50 countries and supported by all, including the United States.

A wealth of descriptive studies over the last five years has quantified the economic and health impact of autism on families. In one recent study, the economic cost of autism in the United States was updated, showing a substantial increase in cost across a variety of domains. The overall cost of ASD in the US is now estimated at $137 billion per year and the cost of providing care for each person with an ASD ranges from $1.4 million to $2.3 million over their lifespan, a number that is impacted by intellectual disability of the person.18 This is a dramatic increase from the 2007 estimate of $35 billion per year. Drivers of costs associated with ASD included special education services19 and parental productivity loss.20 These costs were substantially smaller, however, than those related to residential care and individual productivity loss for individuals with ASD in adulthood.

Recent research has also provided a much better and more sophisticated understanding of disparities in the delivery of care to children and adults with ASD. Studies have moved beyond examining disparities in age of diagnosis to examine disparities in components of the diagnostic experience and in service use post-diagnosis.21, 22 Recent findings suggesting that the lifespan of people with ASD is similar to that of typically-developing peers (except in cases where comorbid conditions and accidents cause premature mortality) point to the need for more research to understand and address both comorbid conditions and the challenges of aging with ASD.23

Progress Toward the Aspirational Goal

Health disparities in the diagnosis and treatment of autism now are well described but poorly addressed. Studies must move from observational to experimental, in which strategies to reduce disparities are developed and tested. One issue of particular importance may be whether improving quality of care in traditionally underserved geographic regions is enough to ameliorate disparities, or if instead interventions targeted toward specific cultural and ethnic groups are needed. The Committee highlighted the need for the research portfolio to focus on developing practical, affordable and culturally-competent services and support approaches that can be used in a variety of settings, and for these approaches to be able to be adapted to the required scale to meet community needs.

While considerable strides have been made toward understanding the best ways to implement evidence-based practices in community settings, there is much work left to do in bringing interventions to scale. One barrier to studies that address related issues is the lack of strong, ongoing community-academic partnerships. These partnerships are necessary to conduct field research on effectiveness, implementation and scale-up of evidence-based practices. The Department of Education Institute of Education Science (IES) offered a partnership Request For Applications (RFA) in 2013 and NIMH previously supported a Research Infrastructure Support Program (RISP) mechanism to develop and maintain this type of infrastructure. On a related note, most implementation or effectiveness studies have examined one intervention at a time in single service systems. Many, if not most, individuals with ASD receive multiple services concurrently in response to complex needs. Methods are needed to account for, and perhaps coordinate or simplify this complexity.

Progress in this area also has been hampered by some significant measurement issues. Currently there are few instruments that are appropriate for use at the population level to measure either availability or quality of services, or outcomes of these services. State agencies already may collect some of these important measures or may have the infrastructure to do so, suggesting the need for a different type of public-academic partnership. This measurement is urgently needed to provide a benchmark for the success of different programs at improving the health of the population and to identify models of excellence.

One important recent development is the investment by the NIH in a series of three initiatives to support research on services implementation across the lifespan, with the goals of addressing the challenges of improving outcomes for children, adolescents and adults. The first initiative targets models for coordination of ASD identification, evaluation, and early intervention services for children with ASD within the first two years of life, including tests of the feasibility and effectiveness of interventions across settings.24 The second focuses on models to assist adolescents with ASD to transition to adult supports and services while preventing lapses in services and supports, enhancing functioning across settings, and maintaining or improving ASD symptoms, general health, safety, and quality of life.25 The third addresses development of adult ASD service strategies that concern areas of employment and training, social relationships, physical and mental health, and independent functioning, including community housing and safety, alone or in combination, with the ultimate goal of improving behavioral, functional and health outcomes.26 Awards for all three initiatives are expected in 2014.

In the past several years, while important strides have been made in estimating the economic impact of autism, there is still a need for more information on the cost effectiveness of services that can help support policy decisions. New cost effectiveness research should take a lifespan approach to assess long-term costs and benefits. Economic cost is not the only cost however, and should not be examined at the expense of other potential benefits of intervention. The concept of "social return on investment" may be an important one to examine. One possibility to address both types of return on investment is to take advantage of ongoing or recently completed randomized trials to continue to follow both the experimental and control conditions to determine the long-term impacts of these interventions.

In the past 5 years, the IACC and private organizations have helped raise a new level of public awareness of safety issues such as seclusion, restraint and wandering that have had significant impact on the ASD community.27, 28 Some initial steps toward disseminating information and data gathering activities have begun, but much more progress is needed in order to reduce the number of incidents, injuries and deaths associated with these preventable circumstances.

Overall, there are many opportunities for increased investment in ASD services research to fill important gaps in knowledge about what services are needed, how to best deliver them, which services work for which communities and strategies to increase uptake of best practices across settings. With infusion of additional support, infrastructure such as state demonstration programs that have been established within the past 5 years could provide an important opportunity for new research partnerships that could yield valuable information about services approaches in real-world settings. Such innovative approaches and resulting research data will be needed in the future to support progress toward the IACC Question 5 aspirational goal of creating an environment where "communities will access and implement necessary, high-quality, evidence-based services and supports that maximize quality of life and health across the lifespan for all people with ASD."


Question 5 Cumulative Funding Table

IACC Strategic Plan Objectives 2008 2009 2010 2011 2012 Total
Support two studies that assess how variations in and access to services affect family functioning in diverse populations, including underserved populations, by 2012.

IACC Recommended Budget: $1,000,000 over 3 years
5.2
$0
0 projects

5.S.A
$499,999
1 project

5.S.A
$2,061,834
9 projects

5.S.A
$1,351,793
8 projects

5.S.A
$1,364,087
6 projects

$5,277,713
5.S.A. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: The initial target of two studies was met, with 1-9 projects supported per year, but more work is still needed in this area.

Remaining gaps, needs and opportunities: The projects under this objective cover several topics related to family functioning and health disparities, but not the full breadth of the gaps mentioned in the objective. This objective, as written, may be too broad. Work is still needed to understand why underserved populations have poorer outcomes and what can be done to close the gaps. We need to understand what portfolio of services will result in the best outcomes for different populations. To address these questions, a qualitative approach (i.e., needs assessment or survey) may be needed to understand the context of barriers faced by different groups. Research on disparities needs to move beyond observational studies to experimental designs to see what approaches work best in different populations and settings.
 
Conduct one study to examine how self-directed community-based services and supports impact children, youth, and adults with ASD across the spectrum by 2014.

IACC Recommended Budget: $6,000,000 over 3 years
N/A

5.S.B
$446,340
6 projects

5.S.B
$291,635
6 projects

5.S.B
$0
1 project

5.S.B
$0
0 projects

$737,975
5.S.B. Funding: The recommended budget was partially met.

Progress: More work is needed in this area to achieve the goals set forth by the objective. While more than the number of studies called for have been supported, the area is underfunded (the projects have been small) and the projects do not examine all areas targeted in the objective.

Remaining gaps, needs and opportunities: Several of the funded projects relate to recreational activities, but more projects that focus on issues such as housing, employment, and quality of life (self-direction) are needed. Issues such as housing and employment may not be reflected in the portfolio data because the agencies and organizations included in the analysis may not have these topics as a primary focus, and many housing and employment-related efforts may not be specific to ASD. This area may benefit from a "practice to research" approach where already-operating programs can be evaluated for efficacy and this may help to develop more easily implementable services. Work is also needed to determine what outcome measures are informative and useful. Another issue is the scalability, as many vocational projects are very small and intensive and this is not an effective model for broad implementation. Potential funding mechanisms for these evaluations include the Dept. of Education Institute of Educational Science program for partnering researchers and educators and the NIMH Research Initiative for Scientific Enhancement (RISE) R25 program.
 
Implement and evaluate five models of policy and practice-level coordination among State and local agencies to provide integrated and comprehensive community-based supports and services that enhance access to services and supports, self-determination, economic self-sufficiency, and quality of life for people with ASD across the spectrum and their families, (which may include access to augmentative and alternative communication [AAC] technology), with at least one project aimed at the needs of transitioning youth and at least one study to evaluate a model of policy and practice-level coordination among State and local mental health agencies serving people with ASD, by 2015.

IACC Recommended Budget: $25,000,000 over 5 years (revised in 2011)
N/A

5.S.C
$0
0 projects

5.S.C
$4,225,315
15 projects

5.S.C
$600,000
3 projects

5.S.C
$600,000
2 projects

$5,425,315
5.S.C. Funding: The recommended budget was partially met.

Progress: Progress has been made but the objective is not fully achieved, as it is underfunded and the projects do not cover all of the issues mentioned in the objective.

Remaining gaps, needs and opportunities: Studying services coordination is very difficult and it is hard to define outcomes. State to state dissemination is very limited and fragmented. Also, state policies often are translated to practice very differently in different areas and counties. State and local services programs also suffer from a lack of knowledge in how to engage and sustain community and partnerships. A pairing of existing state and local services programs(including those that may be participating in federally-funded state demonstration programs) with research funding for evaluation would be the most cost-effective way to collect and analyze data about the implementation of models of coordination. For example, building research projects onto existing state demonstration programs and supporting the development of partnerships between academic researchers and state agencies to study models of policy implementation would be ways to advance this type of research.
 
Support two studies to examine health, safety, and mortality issues for people with ASD by 2012.

IACC Recommended Budget: $4,500,000 over 3 years
N/A

N/A

5.S.D
$159,135
3 projects

5.S.D
$0
1 project

5.S.D
$5,000
1 project

$164,135
5.S.D. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: More work is needed on this objective; studies have been funded in this area (e.g., wandering, victimization), but they are small and they do not address all issues within this objective.

Remaining gaps, needs and opportunities: There may be some projects in other Strategic Plan Questions that are related to this objective (i.e., the Utah epidemiological study This link exits the Interagency Autism Coordinating Committee Web site coded to Question 7 that examines health risks and causes of mortality). There is ongoing data mining of existing data sets to identify risks, new methods of prevention, methods of recovery, and best practices. Best practices need to be developed to respond to wandering (prevention, response, and search). A "practice to research" model, where data are collected in the process of delivering services, would also be appropriate. One issue that is underrepresented in the portfolio is sexual/reproductive health communication for adolescents and adults with ASD. In general, adult needs are not well-represented in the current research.
 
Test four methods to improve dissemination, implementation, and sustainability of evidence-based interventions, services, and supports in diverse community settings by 2013.

IACC Recommended Budget: $7,000,000 over 5 years
5.4
$125,838
2 projects

5.L.A
$5,460,809
10 projects

5.L.A
$7,747,912
22 projects

5.L.A
$5,840,814
24 projects

5.L.A
$7,210,677
32 projects

$26,386,050
5.L.A. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: This is a very broad objective, and a lot of research is being supported in this area. More work is needed, however, to cover the range of topics addressed in the objective.

Remaining gaps, needs and opportunities: Specifically, the requirement of projects looking at diverse community settings has not been met. Most of the projects listed are not focused on dissemination or may be using a model that is not well-translated to autism. Dissemination should be part of a grant application and this should be rigorously enforced. An opportunity in this area would be to create and support training institutes within existing networks that are focused on implementation and dissemination.
 
Test the efficacy and cost-effectiveness of at least four evidence-based services and supports for people with ASD across the spectrum and of all ages living in community settings by 2015.

IACC Recommended Budget: $16,700,000 over 5 years
5.3
$0
0 projects

5.L.B
$103,722
5 projects

5.L.B
$0
0 projects

5.L.B
$0
0 projects

5.L.B
$499,995
1 project

$603,717
5.L.B. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: There are ongoing projects under this objective with regard to efficacy but not cost-effectiveness. More work is needed and in general, the intention of this objective has not been achieved.

Remaining gaps, needs and opportunities: Cost-effectiveness evaluations have to be paired with randomized controlled trials (RCTs). Efforts should be made to build onto existing efforts by adding cost-effectiveness evaluation to existing RCTs. Administrative supplements may help to achieve those additions. There are not well established autism-specific measures of cost-effectiveness. Some barriers to achieving this objective include the need for a long follow up period, which often is not possible due to the cost of running longer term trials. Also, these projects often do not receive favorable scores during grant review because review favors tightly controlled experimental designs rather than experimentation in real-world conditions.  
 
Evaluate new and existing pre-service and in-service training to increase skill levels in service providers, including direct support workers, parents and legal guardians, education staff, and public service workers, to benefit the spectrum of people with ASD and to promote interdisciplinary practice by 2015.

IACC Recommended Budget: $8,000,000 over 5 years
N/A

5.L.C
$132,494
6 projects

5.L.C
$36,433,257
83 projects

5.L.C
$6,048,734
30 projects

5.L.C
$3,724,262
29 projects

$46,338,747
5.L.C. Funding: The recommended budget was met. Significantly more than the recommended minimum budget was allocated to projects specific to this objective.

Progress: Many projects have been funded in this area. However, there is an ongoing need for support of efforts in this area.

Remaining gaps, needs and opportunities: Significant workforce needs remain, especially with regard to paraprofessionals. With all studies in this objective, there remains an issue of scale. Most training programs are designed for small groups. In order for training to be effective at the community level, it has to be able to scale up for broad dissemination, so training programs need to be evaluated for their potential to be scaled up. Comparative effectiveness studies of training models are needed to illuminate whether or not providers need more training, which populations require which training methods, and which training methods are most effective.
 
Evaluate at least two strategies or programs to increase the health and safety of people with ASD that simultaneously consider principles of self-determination and personal autonomy by 2015.

IACC Recommended Budget: $2,000,000 over 2 years
N/A

N/A

5.L.D
$296,840
5 projects

5.L.D
$279,999
4 projects

5.L.D
$54,999
3 projects

$631,838
5.L.D. Funding: The recommended budget was small yet was partially met.

Progress: Though more than the two studies recommended as a minimum have been funded in this area, more work is needed. This objective overlaps significantly with 5.S.D and also with 4.S.H. In the future, perhaps these objectives should be collapsed and combined.

Remaining gaps, needs and opportunities: Obesity is an important issue related to this objective that is not in the portfolio, but should also be a focus.
 
Support three studies of dental health issues for people with ASD by 2015. This should include:
  • One study on the cost-benefit of providing comprehensive dental services, including routine, non-emergency medical and surgical dental services, denture coverage, and sedation dentistry to adults with ASD as compared to emergency and/or no treatment.
  • One study focusing on the provision of accessible, person-centered, equitable, effective, safe, and efficient dental services to people with ASD.
  • One study evaluating pre-service and in-service training program to increase skill levels in oral health professionals to benefit people with ASD and promote interdisciplinary practice.
IACC Recommended Budget: $900,000 over 3 years for each sub-objective ($2,700,000 total)
N/A

N/A

5.L.E
$196,457
2 projects

5.L.E
$443,860
3 projects

5.L.E
$307,784
2 projects

$948,101
5.L.E. Funding: The recommended budget was partially met.

Progress: While several important projects have been funded in this area, there is a gap in projects that focus on dental services for adults and training for dentists working with autistic adults.

Remaining gaps, needs and opportunities: While the funded studies focus on behavior management, a more comprehensive health focus is needed to address the dental needs of children and adults with ASD. This objective is very specific, but there are other important primary health care needs for people with ASD that need to be addressed. In the future, perhaps this topic could be collapsed under a broader general objective that addresses primary health care needs (combined with 5.S.D, 5.L.D). If a new objective were to be written, other important primary care issues such as mental health services should be included.
 
Not specific to any objective (Core/Other Activities) 5.Core/Other Activities
$1,247,714
5 projects

5.Core/Other Activities
$2,004,687
8 projects

5.Core/Other
Activities
$13,436,737
66 projects

5.Core/Other
Activities
$11,553,704
63 projects

5.Core/Other
Activities
$9,060,297
62 projects

$37,303,139
Total funding for Question 5 $1,685,222
13 projects

$8,648,050
36 projects

$64,849,122
211 projects

$26,118,904 137 projects

$22,827,101 138 projects

$123,816,730*

Table 5: Question 5 Cumulative Funding Table, see appendix for a color-coding key and further details.

* This total reflects all funding for projects aligned to current objectives in the 2011 IACC Strategic Plan and incorporates funding for projects that may have been coded differently in previous versions of the Plan.

The totals reflect the funding and projects coded to this Question of the Strategic Plan in the particular year indicated at the top of the column. When reading each column vertically, please note that the projects and funding associated with each objective for the years 2008, 2009, and 2010 may not add up to the total at the bottom of the column; this is due to revisions of the Strategic Plan that caused some objectives to be shifted to other Questions under the Plan. The projects and funding associated with these reclassified objectives are now reflected under the Question in which they appear in the 2011 Strategic Plan.

References

1 Mandell DS, Stahmer AC, Shin S, Xie M, Reisinger E, Marcus SC. The role of treatment fidelity on outcomes during a randomized field trial of an autism intervention. Autism Int. J. Res. Pract. 2013 May; 17(3):281–295. [PMID: 23592849]

2 Autism Speaks. Tool Kits. This link exits the Interagency Autism Coordinating Committee Web site

3 Coury DL, Ashwood P, Fasano A, Fuchs G, Geraghty M, Kaul A, Mawe G, Patterson P, Jones NE. Gastrointestinal conditions in children with autism spectrum disorder: developing a research agenda. Pediatrics. 2012 Nov; 130 Suppl 2S160–168. [PMID: 23118247]

4 Furuta GT, Williams K, Kooros K, Kaul A, Panzer R, Coury DL, Fuchs G. Management of constipation in children and adolescents with autism spectrum disorders. Pediatrics. 2012 Nov; 130 Suppl 2S98–105. [PMID: 23118260]

5 Sikora DM, Johnson K, Clemons T, Katz T. The relationship between sleep problems and daytime behavior in children of different ages with autism spectrum disorders. Pediatrics. 2012 Nov; 130 Suppl 2S83–90. [PMID: 23118258]

6 Malow BA, Byars K, Johnson K, Weiss S, Bernal P, Goldman SE, Panzer R, Coury DL, Glaze DG. A practice pathway for the identification, evaluation, and management of insomnia in children and adolescents with autism spectrum disorders. Pediatrics. 2012 Nov; 130 Suppl 2S106–124. [PMID: 23118242]

7 Sikora DM, Vora P, Coury DL, Rosenberg D. Attention-deficit/hyperactivity disorder symptoms, adaptive functioning, and quality of life in children with autism spectrum disorder. Pediatrics. 2012 Nov; 130 Suppl 2S91–97. [PMID: 23118259]

8 Mahajan R, Bernal MP, Panzer R, Whitaker A, Roberts W, Handen B, Hardan A, Anagnostou E, Veenstra-VanderWeele J. Clinical practice pathways for evaluation and medication choice for attention-deficit/hyperactivity disorder symptoms in autism spectrum disorders. Pediatrics. 2012 Nov; 130 Suppl 2S125–138. [PMID: 23118243]

9 US Department of Education. Restraint and Seclusion Resource Document (PDF - 1 MB) 2012 May.

10 Solomon O, Lawlor MC. 'And I look down and he is gone': narrating autism, elopement and wandering in Los Angeles. Soc. Sci. Med. 1982. 2013 Oct; 94106–114. [PMID: 23890970]

11 Anderson C, Law JK, Daniels A, Rice C, Mandell DS, Hagopian L, Law PA. Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics. 2012 Nov; 130(5):870–877. [PMID: 23045563]

12 National Autism Association. Big Red Toolkit. This link exits the Interagency Autism Coordinating Committee Web site

13 Lowery R. Missing Children With Special Needs. (PDF - 986 KB) 2013 Jul.

14 Young J, Corea C, Kimani J, Mandell DS. Autism Spectrum Disorders (ASDs) Services Final Report on Environmental Scan. This link exits the Interagency Autism Coordinating Committee Web site (IMPAQ International, 2010 Mar). 112.

15 Centers for Medicare & Medicaid Services. Report on State Services to Individuals with Autism Spectrum Disorders (ASD) (PDF - 884 KB) 2011 Apr.

16 United Nations General Assembly. Resolution 67/82: Addressing the socioeconomic needs of individuals, families and societies affected by autism spectrum disorders, developmental disorders and associated disabilities. This link exits the Interagency Autism Coordinating Committee Web site 2012 Dec.

17 The World Health Organization, Executive Board. Resolution EB133. R1: Comprehensive and coordinated efforts for the management of autism spectrum disorders. This link exits the Interagency Autism Coordinating Committee Web site (PDF - 45 KB) 2013 May.

18 Mandell DS. Estimating the Economic Costs of Autism. 2012 Mar.

19 Lavelle TA, Weinstein MC, Newhouse JP, Munir K, Kuhlthau KA, Prosser LA. Economic Burden of Childhood Autism Spectrum Disorders. Pediatrics. 2014 Mar; 133(3):e520-9. [PMID: 24515505]

20 Cidav Z, Marcus SC, Mandell DS. Implications of childhood autism for parental employment and earnings. Pediatrics. 2012 Apr; 129(4):617–623. [PMID: 22430453]

21 Liptak GS, Benzoni LB, Mruzek DW, Nolan KW, Thingvoll MA, Wade CM, Fryer GE. Disparities in Diagnosis and Access to Health Services for Children with Autism: Data from the National Survey of Children's Health: J. Dev. Behav. Pediatr. 2008 Jun; 29(3):152–160. [PMID: 18349708]

22 Cidav Z, Lawer L, Marcus SC, Mandell DS. Age-Related Variation in Health Service Use and Associated Expenditures Among Children with Autism. J. Autism Dev. Disord. 2013 Apr; 43(4):924–931. [PMID: 22941343]

23 Bilder D, Botts EL, Smith KR, Pimentel R, Farley M, Viskochil J, McMahon WM, Block H, Ritvo E, Ritvo RA, Coon H. Excess mortality and causes of death in autism spectrum disorders: a follow up of the 1980s Utah/UCLA autism epidemiologic study. J. Autism Dev. Disord. 2013 May; 43(5):1196–1204. [PMID: 23008058]

24 National Institute of Mental Health. RFA-MH-14-100. Services Research for Autism Spectrum Disorder across the Lifespan (ServASD): Research on Early Identification and Linkage to Services for ASD (R01). 2013 May;

25 National Institute of Mental Health. RFA-MH-14-101. Services Research for Autism Spectrum Disorder across the Lifespan (ServASD): Pilot Research on Services for Transition-Age Youth (R34). 2013 May;

26 National Institute of Mental Health. RFA-MH-14-102. Services Research for Autism Spectrum Disorders across the Lifespan (ServASD): Pilot Studies of Services Strategies for Adults with ASD (R34). 2013 May;

27 Interagency Autism Coordinating Committee. IACC Letter to Secretary Sebelius on Wandering. 2011 Feb;

28 Interagency Autism Coordinating Committee. IACC Letter to the Secretary on Seclusion and Restraint. 2011 Sep;


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

Suggested Citation
Interagency Autism Coordinating Committee (IACC). IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research —2013 Update. April 2014. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: http://iacc.hhs.gov/strategic-plan/2013/index.shtml.


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