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

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Question 6: What Does the Future Hold, Particularly for Adults?

Introduction

Aspirational Goal: All people with ASD will have the opportunity to lead self-determined lives in the community of their choice through school, work, community participation, meaningful relationships, and access to necessary and individualized services and supports.

Positive, early childhood experiences can help increase the likelihood of better outcomes in adulthood. However, gains that were hard-won in childhood are at risk of losing traction during the period of new challenges associated with the transition to adulthood. The nature and availability of supportive services change dramatically as youth age out of eligibility for special education.1, 2 Families and adults on the autism spectrum need to navigate an entirely new terrain of services. The social-ecological context of development, which encompasses how individuals interact with the communities and systems around them, also changes radically upon leaving secondary school.

Adulthood brings new challenges related to the attainment and performance of social roles, shifts in family roles and relationships as parents age, and coping with the accumulation of a lifetime of financial and psychological stressors. Co-occurring mental health conditions also present an area of great challenge for many adults on the autism spectrum.3, 4 For some, adulthood may also introduce new abilities, declining impairment severity, discovery of new ways to participate and contribute in communities, and new opportunities for achieving health and well-being. For others, particularly those with significant intellectual impairment, severe behavioral and communication challenges persist into adulthood, often with additional complications such as epilepsy.5 As in other stages of life, there must be a wide variety of approaches available to adults to reflect the broad diversity of challenges found in home and community contexts and to support improved outcomes for people across the entire autism spectrum.

The 2009 IACC Strategic Plan emphasized the need for research on individual-level interventions to improve outcomes for adults with ASD. This remains an important area for research, and some progress has been made. However, there have been important changes in thinking over the past few years about how best to support the success of adults on the autism spectrum. There have been calls for research performed in real-world settings that focuses on outcomes related to quality of life, and interventions that target the social environment and not just the individual. There also has been a growing recognition of the need for researchers to build the evidence base through partnerships with community agencies and businesses that are developing promising innovations rather than in academic research settings.

Progress Toward Strategic Plan Objectives

The 2009 IACC Strategic Plan, including revisions in 2010 and 2011, called for eight objectives within Question 6 that the Committee viewed as gap areas. Under this question there are four short-term objectives and four long-term objectives that highlight the need for research about transitioning youth, adult diagnosis, and adult interventions. The total recommended budget was $54 million across all eight objectives for this question.

Of the eight objectives under Question 6, three objectives address the impact on quality of life for adults utilizing various services, including  aspects of the service delivery system such as educational and health services , specialized training for direct care providers, and interventions and services received during childhood. The recommended number of projects was fulfilled for these objectives and the recommended budgets were partially met. Two objectives regarding the evaluation of existing disability programs for their effectiveness in meeting the needs of transitioning youth and adults and the development of community-based interventions partially met the recommended budget levels and had active projects underway to accomplish the objective. Another two objectives, with projects to develop methods to identify adults and link them to services, and to conduct implementation research of services for adults, were far below the recommended budget and number of projects. Finally, one objective to conduct comparative effectiveness research to examine community-based interventions, services, and supports for adults has had only 2 projects in the past 5 years, and in the most recent 2 years did not have any funding or projects. The Committee raised the question of whether there are yet enough empirically solid adult interventions to make it possible to conduct comparative effectiveness studies.

The Committee noted that an overarching issue in the current organization of the IACC Strategic Plan objectives was that  grouping of several distinct topics into each objective made it challenging to assess progress, and that future iterations might potentially benefit from further division into discrete topics such as community housing, life transitions, employment, and services/supports for older adults.

There have been several notable advances in research in this area over the past 5 years.  A number of studies have begun describing young adult outcomes,6 service needs and access,7 and service program models.2 Systematic reviews have examined extant research on services and interventions.8 Examples of community-based participatory research have also emerged, such as adaptation of surveys to allow for more active participation of adults with ASD in reporting on health care experiences.9 In one such survey, when compared with the general population, adults with ASD reported several concerns such as lower satisfaction with patient-provider communication and higher odds of unmet physical and mental healthcare needs, providing useful information about specific parts of the healthcare experience that can be improved.9

Despite these advances, the rate of production of scientific knowledge about the experience of autism in adulthood remains very low. The generalizability of findings from many of these studies is limited by small sample sizes, lack of information about the socioeconomic and ethnic-racial characteristics of study subjects, and issues with research design and methodology.8, 10, 11 The quality of studies conducted through 2011 regarding vocational programming,12 pharmacology,13 social skills interventions,10 and psychosocial interventions,14 remains in an emergent state.

The growing number of adults with autism due to increased awareness and diagnosis, as well as the transition of children and adolescents into adulthood has reinforced the sense of urgency around research that can guide national policy recommendations for supports and models of employment, community living, and continued education.  Much growth in ASD program innovations is occurring outside of the traditional academic realm,15 and this body of practice-based knowledge should be incorporated along with more traditional research efforts as an important driver of future investigations.

Progress Toward the Aspirational Goal

Longitudinal data on life course pathways and outcomes, evaluation of service innovations in partnership with community agencies, understanding the positive contributions people on the autism spectrum can make to society, financial impacts on families, and improved ability to measure outcomes at the population level are all areas of research where work is required to continue progress toward the aspirational goal. The majority of a typical lifespan is spent in adulthood. However, this is the stage of life that is still the least understood in ASD. In recent years, awareness of the needs of adults on the autism spectrum has increased to some extent, and more data on services gaps and outcomes have become available. For example, results of a recent meta-analysis suggest that adults with ASD experience a lower quality of life than adults without ASD, and that this trend extends into older adulthood.16

Given the relatively limited existing data, more research focus should be directed toward understanding how ASD unfolds across the lifespan by conducting longitudinal studies that extend into adulthood. Longitudinal studies have paid dividends in basic science knowledge for other developmental disorders like Fragile X syndrome and Down syndrome and have the potential to yield similar benefits for autism. In addition, more detailed studies of the needs of adults on the spectrum are required to better understand the nature of these needs and to determine which services will best support individuals across the lifespan with the greatest return on investment for society.

Several seminal studies have been published that provide basic epidemiological description of the prevalence and correlates of various outcomes of the transition into early adulthood, along with risks and protective factors. Through these, we are learning more about the high prevalence of co-occurring health and psychiatric disabilities in adults,4, 17 and the need for physicians with specialized training to provide care for adults with ASD.7 Analysis of state developmental disability services data found the rate of self-injurious and destructive behaviors was twice as high in middle-aged adults with ASD and intellectual impairment compared to those with only intellectual disability, signaling the urgency of treatment and policy to address severe behavioral problems.18 A follow-up to a 1980s statewide autism prevalence study in Utah to investigate mortality among individuals with ASD found that elevated mortality risk associated with ASD appeared to be related to the presence of co-occurring medical conditions and intellectual disability rather than ASD itself, suggesting the importance of access throughout life to coordinated medical care for this high risk sub-population.19

Cohort studies have revealed a high rate of complete disconnection of young adults from any work or education during the first several years after high school – greater than 50 percent during the first two years after exiting high school.20 The rate of disconnection was higher compared to youth with other disabilities even after adjusting for correlates. The latest research data indicate that outcomes are particularly poor for young adults from socially disadvantaged families and for those who have greater levels of impairment. 20–22

Employment has been a particular area of research focus. One recent study found that for adults with ASD, the rate of ever having a paid job in the first eight years after high school is about 50 percent - much lower than among youth with other types of disability.22, 23 In addition, the types of jobs were limited in range, and average rate of pay was not adequate to support independent living.22, 23 The study also found that even among people with ASD who had severely impaired conversational abilities, approximately one-fifth did become employed, highlighting the potential for employment even among those with high levels of impairment.22 In another study, researchers found that adults with ASD who engaged in work had greater vocational independence and were more likely to have fewer maladaptive behaviors and improved activities-of-daily-living skills five years later.23, 24 Research findings also suggest that vocational outcomes are better for individuals who do not work in sheltered workshop settings prior to participating in supported employment.25 Recent work toward development of vocational indexes that can facilitate standardized measurement of a full range of vocational and educational outcomes will enhance researchers' ability to study trajectories of development during adulthood and measure the impact of interventions and services aimed at promoting independence.26

Over the past 5 years, more knowledge has been gained about the social and mental health issues faced by adults on the autism spectrum. Research suggests that the experience of social isolation is more pronounced in young adults with ASD than those with other types of disabilities.27, 28 Increased levels of loneliness appear to have a negative effect on mental well-being.29 With regard to residential status, research has found that young adults on the autism spectrum are more likely to have lived at home, to never have lived elsewhere on their own, and to have required more supervision compared to adults with other disability types.21

In the arenas of intervention and services research, which are more thoroughly addressed in Questions 4 and 5 of the 2013 IACC Strategic Plan Update, much research has focused on psychosocial interventions with noted improvement with use of methods like applied behavior analysis and social cognition training.14, 30 Development and adaptation of social skills interventions for people with severe intellectual disability is a continuing need.10

What Gaps Have Emerged in the Past Two Years?

Several gaps—and opportunities—have become clear in the past two years. Using the World Health Organization (WHO)'s biopsychosocial framework for understanding disability, several areas for further ASD adults services research efforts can be defined.31 Overall, currently there is a limited knowledge base regarding the needs of adults on the autism spectrum as they relate to severity of impairment at all levels. The Committee noted particular urgency for increasing research directed at understanding and meeting the needs of those on the more severely-affected end of the autism spectrum, and for the development of services approaches and service delivery models that will improve quality of life for adults with severe disability. These include approaches to address issues of employment, housing, health, social life, recreation and other issues that influence how a person with ASD integrates into adult society.

Research gaps within the medical/health arena (the "biological" level of analysis in the WHO framework) include the limited understanding of the course of co-occurring health conditions through adulthood, limited research on the course of neurological development in later stages of life, and limited studies of the long-term outcomes associated with use of various types of interventions. Programs of research addressing questions about the maturation and aging process in disability conditions such as Fragile X syndrome and Down syndrome may represent opportunities for asking similar scientific question about the process of aging in ASD.

Gaps in the mental and behavioral health arenas (the "psychological and behavioral" level of analysis in the WHO framework) include continued difficulty describing the heterogeneity of the autism spectrum in ways that are informative for treatment planning and policy making. Developing strategies for intervening in complex cases with both severe developmental and mental health challenges remains an area where the knowledge base needs to be expanded. With increasing awareness of co-occurring conditions that affect people with ASD and recent data suggesting that co-occurring conditions such as epilepsy can be a cause of elevated mortality, it is important to understand the pattern of emergence of these conditions in order to anticipate and work toward prevention of the secondary effects of these added challenges. There is a strong need for more studies that characterize the heterogeneity of development and outcomes in ASD in middle and later stages of adulthood.

There also continue to be major gaps in knowledge at the "social and population health" levels of analysis. There is limited knowledge of the ways in which people on the autism spectrum contribute to communities and society. Strategies being examined in health and mental health services research, such as peer mentoring and navigation, may represent opportunities for adaptation. A growing autism self-advocacy movement increases opportunities for collaborative research partnerships. With respect to adults who remain dependent on their families for care, very little is known about the needs of these individuals and what approaches will provide the greatest help to families planning for the transition when parents are no longer able to care for their dependent adult child.

Identification and surveillance of autism in adults, and development of screening and diagnostic tools for use in adult populations also remain important needs. There is an ongoing study to adapt the Autism Diagnostic Observation Schedule (ADOS) modules 1 and 2 for use in adults, but multiple projects testing different approaches would be optimal. It is important for the tools that are being developed to be efficient so they can be readily employed in large, community based settings. There is also a need for screening and diagnostic tools to be adaptable to different settings and cultural contexts, including international settings. For example, a study conducted in 2012 illuminated the need for adaptation of diagnostic tools for Latino populations.32 Along with the development of screening and diagnostic tools, attention needs to be focused on ensuring that there is an available network of services for those who receive a diagnosis and that diagnosis does not inadvertently result in a loss of services and supports.

Outcome measures are needed for quality of life in adults with ASD. It is important to understand what outcomes are meaningful to adults with ASD and their families. Person-centered outcomes strategies and measures should be developed. Achieving validity and reliability of such measures across the lifespan and full range of the autism spectrum remains a significant challenge.

ASD affects multiple domains and many adults are simultaneously involved in different types of services and interventions. Research is needed to better understand the challenges entailed in navigating the service system and how family finances are impacted over the lifespan. Most research remains focused on one intervention at a time, not taking into account the complexity of systems of care in real-world settings. There is little understanding of how nonprofit and government service providers and systems are adapting to the growing number of adults on the spectrum. Advances in conceptualizing and measuring social return on investment and patient preferences could be adapted to build a stronger basis upon which to study the population-level benefits of societal investment in adult services.

As mentioned in the preceding chapter on Question 5, NIH has recently launched 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 people with ASD across the lifespan.  Of relevance to Question 6, one of the initiatives focuses on models to assist adolescents with  ASD to transition to adult supports and services while preventing lapses in supports and services, enhancing functioning across settings, and maintaining or improving ASD symptoms, general health, safety, and quality of life.33 Another 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.34 Awards are expected in 2014.

Some exciting developments in other sectors and fields may hold promise for adaptation and examination in the context of ASD research. Much growth in ASD program innovation is occurring outside of the traditional academic realm, highlighting a need for more community-based research and research on promising practices that can be replicated and adapted in various settings. There is growing interest in social networks and health outcomes, especially because of the concerns of many parents about what will happen to their child after they are gone. Significant advances have been made in other fields in investigating complex systems, social networks, and factors related to successful knowledge translation and program implementation. Much could be gained by fostering transdisciplinary research to leverage these and other advances being made in other fields. The field of continuous quality improvement is receiving a lot of attention in health services research; the corresponding potential for building practice-based evidence remains largely untapped in ASD, providing an opportunity for future studies.

A number of states have created dedicated autism agencies or bureaus and state-level ASD advisory commissions. There is a growing interest among these stakeholders in improving systems for collecting data about services and outcomes. Combined with technological advances in data aggregation and mining, there is an opportunity to pilot test methods for obtaining these data using community-, state-, and national level population indicators of unmet needs, services access, and outcomes.

Summary and Recommendations

Since the release of the IACC Strategic Plan in 2009, the adult services research field has made some important advances, including gathering of new data on the services available across the states, information about how adults are interacting with the service system, and data on the service needs of adults on the autism spectrum. Data have shown tremendous gaps in the service system that need to be addressed by innovative services approaches that are cost-effective and can be adapted to use in a broad variety of settings. While recent systematic reviews about adult interventions and services have noted the need to increase the evidence base to support access to services,14 the research field is beginning to yield promising randomized controlled trial results35 that have already influenced service provision in many states and service providers and businesses have been rolling out innovative promising practices. Moving forward, partnerships between academic researchers and state, local and private service providers will play an important role in building a body of practice-based evidence that can support effective service provision strategies. This work may also be helpful in filling the gap in effective methods for measuring population level outcomes that can indicate whether efforts implemented at agency and community levels are translating to improvements in the well-being of the population.  While adult services remain a major frontier in autism research, increased investment in this area holds great potential to strengthen the service system with approaches and practices grounded in a strong evidence base, with the ultimate goal of providing all people with ASD with access to the services and supports they need to maximize their health, fully participate in community life, and live self-determined lives.


Question 6 Cumulative Funding Table

IACC Strategic Plan Objectives 2008 2009 2010 2011 2012 Total
Launch at least two studies to assess and characterize variation in the quality of life for adults on the ASD spectrum as it relates to characteristics of the service delivery system (e.g., safety, integrated employment, post-secondary educational opportunities, community inclusion, self-determination, relationships, and access to health services and community-based services) and determine best practices by 2012.

IACC Recommended Budget: $5,000,000 over 3 years
6.2
$0
0 projects

6.S.A
$20,000
1 project

6.S.A
$283,837
2 projects

6.S.A
$542,193
6 projects

6.S.A
$1,013,156
10 projects

$1,859,186
6.S.A. Funding: The recommended budget was partially met.

Progress: More than two projects have been funded in this area, though the end goal of determining best practices has not yet been met. Still, this area is moving in the right direction as funding and projects have increased over time.

Remaining gaps, needs and opportunities: There is a great need to develop standardized measures for quality of life for people with ASD, across both range of ability and lifespan.
 
Evaluate at least one model, at the State and local level, in which existing programs to assist people with disabilities (e.g., Social Security Administration, Rehabilitation Services Administration) meet the needs of transitioning youth and adults with ASD by 2013.

IACC Recommended Budget: $5,000,000 over 3 years
N/A

6.S.B
$0
0 projects

6.S.B
$700,000
2 projects

6.S.B
$700,000
2 projects

6.S.B
$700,000
2 projects

$2,100,000
6.S.B. Funding: The recommended budget was partially met.

Progress: More than one project was funded, meeting the initial target of this objective.

Remaining gaps, needs and opportunities: Current projects relate to vocational rehabilitation, as called for in the objective, but no projects address Social Security programs, which remain a need. Also, looking at one model is too limited in scope, and stronger partnerships among programs would be beneficial for this objective. In the future, perhaps this objective could be expanded to include more projects and/or funding to examine other models.
 
Develop one method to identify adults across the ASD spectrum who may not be diagnosed, or are misdiagnosed, to support service linkage, better understand prevalence, and track outcomes with consideration of ethical issues (insurance, employment, stigma) by 2015.

IACC Recommended Budget: $8,400,000 over 5 years
N/A

6.S.C
$0
0 projects

6.S.C
$28,000
1 project

6.S.C
$28,000
1 project

6.S.C
$0
1 project

$56,000
6.S.C. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: The objective called for a minimum of one project, and one small project to adapt the ADOS modules 1 and 2 for use in adults has been supported in this area, but most likely multiple projects testing various approaches, followed by intense efforts to refine the instruments, would be needed to develop a set of tools that could be used in different settings to diagnose adults.

Remaining gaps, needs and opportunities: In addition to developing tools that can be used for diagnosis in adults, it is critical to ensure that diagnosis links to a plan for intervention and /or service provision for diagnosed adults, resulting in improved outcomes.
 
Conduct at least one study to measure and improve the quality of lifelong supports being delivered in community settings to adults across the spectrum with ASD through provision of specialized training for direct care staff, parents, and legal guardians, including assessment and development of ASD-specific training, if necessary, by 2015.

IACC Recommended Budget: $7,500,000 over 3 years
N/A

6.S.D
$0
0 projects

6.S.D
$619,163
3 projects

6.S.D
$0
2 projects

6.S.D
$0
1 project

$619,163
6.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: While more than one project has been funded, and the objective called for one project at minimum, the current funding and projects for this objective are not likely to meet the intent of the objective. Also, the few projects funded do not address the full range of issues mentioned in this objective.

Remaining gaps, needs and opportunities: The projects under this objective focus on secondary students and transition age youth  and there are no projects focusing on older adults. No new projects were funded in 2011 and 2012, though the goals of this objective are similar/overlapping to those of 5.L.C, and projects coded there may also represent progress on this objective. There is a need for effective training for healthcare staff and guardians that can be delivered cost-effectively on a large scale.
 
Develop at least two individualized community-based interventions that improve quality-of-life or health outcomes for the spectrum of adults with ASD by 2015.

IACC Recommended Budget: $12,900,000 over 5 years
6.5
$2,471,000
1 project

6.L.A
$509,965
2 projects

6.L.A
$2,285,071
18 projects

6.L.A
$2,154,170
15 projects

6.L.A
$616,119
11 projects

$8,036,325
6.L.A. Funding: The recommended budget was partially met.

Progress: Between 11 and 18 projects were supported each year between 2010 and 2012. Progress is being made; however, a sustained effort is needed to fully achieve the goals set forth by this objective. Funding for projects specific to this objective was substantially lower in 2012 than previous years, which is a concern.

Remaining gaps, needs and opportunities: Work focused on adults with ASD lags behind that focused on children and adolescents. This objective is similar to 6.S.A – it might be helpful to separate the outcomes of interest to better assess progress. Also, quality of life outcome measures are needed to know if interventions are working.
 
Conduct one study that builds on carefully characterized cohorts of children and youth with ASD to determine how interventions, services, and supports delivered during childhood impact adult health and quality of life outcomes by 2015.

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

6.L.B
$718,290
2 projects

6.L.B
$1,280,790
3 projects

6.L.B
$1,348,557
4 projects

6.L.B
$639,346
2 projects

$3,986,983
6.L.B. Funding: The recommended budget was partially met.

Progress: More than the minimum of one recommended project was funded. However, the projects have not answered all of the questions regarding long-term outcomes of interventions, services and supports received during childhood and more research is needed in this area.

Remaining gaps, needs and opportunities: More than one study would be useful for this objective, including a focus on the benefits of early intervention. The barrier of the high cost of conducting these types of studies could be mitigated by capitalizing on partnerships between groups and on existing infrastructure.
 
Conduct comparative effectiveness research that includes a cost-effectiveness component to examine community-based interventions, services, and supports to improve health outcomes and quality of life for adults on the ASD spectrum over age 21 by 2018. Topics should include:
  • Community housing for people with ASD;
  • Successful life transitions for people with ASD, including from post-secondary education to adult services, employment, sibling relationships, and day programs; and
  • Meeting the service and support needs of older adults with ASD.
IACC Recommended Budget: $6,000,000 over 5 years
N/A

6.L.C
$0
0 projects

6.L.C
$774,644
2 projects

6.L.C
$0
0 projects

6.L.C
$0
0 projects

$774,644
6.L.C. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: Not nearly enough funding and projects have been devoted to this objective much more work needs to be done.

Remaining gaps, needs and opportunities: Projects regarding service and support needs of older adults are needed; however, there is a question about whether there are yet enough empirically sound adult interventions to make it possible to do comparative effectiveness studies . It could be useful to separate out specific populations, topics (housing, transitions, etc.) or outcomes in order to better assess progress. A characterization of current resources and how well they're working is needed for this objective, which is the goal of the newly released report from The State of the States project. The current focus of the field on the transition to adulthood should be expanded to include the full lifespan.
 
Conduct implementation research to test the results from comparative effectiveness research in real-world settings, including a cost-effectiveness component to improve health outcomes and quality of life for adults over 21 on the ASD spectrum by 2023.

IACC Recommended Budget: $4,000,000 over 5 years
N/A

6.L.D
$0
0 projects

6.L.D
$0
0 projects

6.L.D
$75,000
2 projects

6.L.D
$60,000
3 projects

$135,000
6.L.D. Funding: The recommended budget was not met; the funding allocated to projects specific to this objective falls far short of the recommendation.

Progress: There is an inadequate amount of projects and funding for this objective. The funded studies are economic analyses,  but there is a lack of comparative effectiveness research in adults that is ready to be tested in real-world settings, and thus, there are no projects that move to this next level.

Remaining gaps, needs and opportunities: There is a huge gap in adult prevalence research, and in identifying relevant real-world settings for adults with ASD. Identifying the needs of adults with ASD remains important (a needs assessment is needed), and research involving ASD subjects beyond the age of 18 is both lacking and vital.
 
Not specific to any objective (Core/Other Activities) 6.Core/Other Activities
$467,683
2 projects

6.Core/Other Activities
$159,444
2 projects

6.Core/Other Activities
$671,619
3 projects

6.Core/Other Activities
$50,000
3 projects

6.Core/Other Activities
$830,556
4 projects

$2,179,302
Total funding for Question 6 $9,796,491
9 projects

$1,407,699
7 projects

$6,643,124
34 projects

$4,897,920
35 projects

$3,859,177
34 projects

$19,746,603*

Table 6: Question 6 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 Shattuck PT, Wagner M, Narendorf S, Sterzing P, Hensley M. Post-high school service use among young adults with an autism spectrum disorder. Arch. Pediatr. Adolesc. Med. 2011 Feb; 165(2):141–146. [PMID: 21300654]

2 Smith LE, Greenberg JS, Mailick MR. Adults with autism: outcomes, family effects, and the multi-family group psychoeducation model. Curr. Psychiatry Rep. 2012 Dec; 14(6):732–738. [PMID: 23015048]

3 Tsakanikos E, Sturmey P, Costello H, Holt G, Bouras N. Referral trends in mental health services for adults with intellectual disability and autism spectrum disorders. Autism Int. J. Res. Pract. 2007 Jan; 11(1):9–17. [PMID: 17175570]

4 Joshi G, Wozniak J, Petty C, Martelon MK, Fried R, Bolfek A, Kotte A, Stevens J, Furtak SL, Bourgeois M, Caruso J, Caron A, Biederman J. Psychiatric comorbidity and functioning in a clinically referred population of adults with autism spectrum disorders: a comparative study. J. Autism Dev. Disord. 2013 Jun; 43(6):1314–1325. [PMID: 23076506]

5 Howlin P, Savage S, Moss P, Tempier A & Rutter M. Cognitive and language skills in adults with autism: a 40-year follow-up. J. Child Psychol. Psychiatry. 2014 Jan; 55(1):49–58. [PMID: 23848399]

6 Anderson DK, Liang JW, Lord C. Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders. J. Child Psychol. Psychiatry. 2013 Dec.[Epub ahead of print] [PMID: 24313878]

7 Bruder MB, Kerins G, Mazzarella C, Sims J, Stein N. Brief report: the medical care of adults with autism spectrum disorders: identifying the needs. J. Autism Dev. Disord. 2012 Nov; 42(11):2498–2504. [PMID: 22427260]

8 Shattuck PT, Roux AM, Hudson LE, Taylor JL, Maenner MJ, Trani JF. Services for adults with an autism spectrum disorder. Can. J. Psychiatry Rev. Can. Psychiatr. 2012 May; 57(5):284–291. [PMID: 22546060]

9 Nicolaidis CRaymaker D, McDonald K, Dern S, Boisclair WC, Ashkenazy E, Baggs A. Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. J. Gen. Intern. Med. 2013 Jun; 28(6):761–769. [PMID: 23179969]

10 Walton KM, Ingersoll BR. Improving social skills in adolescents and adults with autism and severe to profound intellectual disability: a review of the literature. J. Autism Dev. Disord. 2013 Mar; 43(3):594–615. [PMID: 22790427]

11 Warren Z, Taylor JL, McPheeters ML, Worley K, Veenstra-Vander Weele J. Future Research Needs: Interventions for Adolescents and Young Adults With Autism Spectrum Disorders: Identification of Future Research Needs From Comparative Effectiveness Review No. 65. (Agency for Healthcare Research and Quality (US), 2012). at <http://www.ncbi.nlm.nih.gov/books/NBK121979/> [PMID: 23447831]

12 Taylor JL, McPheeters ML, Sathe NA, Dove D, Veenstra-Vanderweele J, Warren Z. A systematic review of vocational interventions for young adults with autism spectrum disorders. Pediatrics. 2012 Sep; 130(3):531–538. [PMID: 22926170]

13 Dove D, Warren Z, McPheeters ML, Taylor JL, Sathe NA, Veenstra-VanderWeele J. Medications for adolescents and young adults with autism spectrum disorders: a systematic review. Pediatrics. 2012 Oct; 130(4):717–726. [PMID: 23008452]

14 Bishop-Fitzpatrick L, Minshew NJ, Eack SM. A systematic review of psychosocial interventions for adults with autism spectrum disorders. J. Autism Dev. Disord. 2013 Mar; 43(3):687–694. [PMID: 22825929]

15 Autism Speaks. Employment Think Tank Report. (2012Jun;). at <http://www.autismspeaks.org/sites/default/files/as_think_tank_exec_summary_web1.pdf This link exits the Interagency Autism Coordinating Committee Web site (PDF - 2 MB)>

16 Van Heijst BF, Geurts HM. Quality of life in autism across the lifespan: A meta-analysis. Autism Int. J. Res. Pract. 2014 Jan. [Epub ahead of print] [PMID: 24443331]

17 Kohane ISMcMurry A, Weber G, MacFadden D, Rappaport L, Kunkel L, Bickel J, Wattanasin N, Spence S, Murphy S, Churchill S. The co-morbidity burden of children and young adults with autism spectrum disorders. PloS One. 2012 7(4):e33224. [PMID: 22511918]

18 Kats D, Payne L, Parlier M, Piven J. Prevalence of selected clinical problems in older adults with autism and intellectual disability. J. Neurodev. Disord. 2013 5(1):27. [PMID: 24066979]

19 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]

20 Shattuck PT, Narendorf SC, Cooper B, Sterzing PR, Wagner M, Taylor JL. Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics. 2012 Jun; 129(6):1042–1049. [PMID: 22585766]

21 Anderson KA, Shattuck PT, Cooper BP, Roux AM, Wagner M. Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism Int. J. Res. Pract. 2013 Sep. [Epub ahead of print][PMID: 23996904]

22 Roux AM, Shattuck PT, Cooper BP, Anderson KA, Wagner M, Narendorf SC. Postsecondary employment experiences among young adults with an autism spectrum disorder. J. Am. Acad. Child Adolesc. Psychiatry. 2013 Sep; 52(9):931–939. [PMID: 23972695]

23 Cimera R, Burgess S. Do adults with autism benefit monetarily from working in their communities? This link exits the Interagency Autism Coordinating Committee Web site J. Vocat. Rehabil. 2011 May; 34(3):173–180.

24 Taylor JL, Smith LE, Mailick MR. Engagement in Vocational Activities Promotes Behavioral Development for Adults with Autism Spectrum Disorders. J. Autism Dev. Disord. 2013 Nov. [Epub ahead of print]; doi:10.1007/s10803-013-2010-9 [PMID: 24287880]

25 Cimera RE, Wehman P, West M, Burgess S. Do sheltered workshops enhance employment outcomes for adults with autism spectrum disorder? Autism. 2012 Jan; 16(1):87–94. [PMID: 21610189]

26 Taylor JL, Seltzer MM. Developing a vocational index for adults with autism spectrum disorders. J. Autism Dev. Disord. 2012 Dec; 42(12):2669–2679. [PMID: 22466690]

27 Orsmond GI, Shattuck PT, Cooper BP, Sterzing PR, Anderson KA. Social participation among young adults with an autism spectrum disorder. J. Autism Dev. Disord. 2013 Nov; 43(11):2710–2719. [PMID: 23615687]

28 Shattuck PT, Orsmond GI, Wagner M, Cooper BP. Participation in social activities among adolescents with an autism spectrum disorder. PloS One. 2011 6(11):e27176. [PMID: 22110612]

29 Mazurek MO. Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism Int. J. Res. Pract. 2013 Oct. [Epub ahead of print] [PMID: 24092838]

30 Kandalaft MR, Didehbani N, Krawczyk DC, Allen TT, Chapman SB. Virtual reality social cognition training for young adults with high-functioning autism. J. Autism Dev. Disord. 2013 Jan; 43(1):34–44. [PMID: 22570145]

31 World Health Organization. Resolution 54.21. International Classification of Functioning, Disability and Health (ICF). 2001 May. at <http://www.who.int/classifications/icf/en/>

32 Magaña S, Smith LE. The use of the autism diagnostic interview-revised with a latino population of adolescents and adults with autism. J. Autism Dev. Disord. 2013 May; 43(5):1098–1105. [PMID: 22972501]

33 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. at <http://grants.nih.gov/grants/guide/rfa-files/RFA-MH-14-101.html>

34 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. at <http://grants.nih.gov/grants/guide/rfa-files/RFA-MH-14-102.html>

35 Landa RJ, Holman KC, O'Neill AH, Stuart EA. Intervention targeting development of socially synchronous engagement in toddlers with autism spectrum disorder: a randomized controlled trial. J. Child Psychol. Psychiatry. 2011 Jan; 52(1):13–21. [PMID: 21126245]



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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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