Comparative Effectiveness

Evidence lacking on best approaches to treat autism in teens and young adults

Despite the number of teens and young adults affected by Autism Spectrum Disorders (ASDs), there is insufficient evidence available for caregivers to choose the best therapies for this group, concludes a research review on the topic. The review focused on the comparative effectiveness of behavioral, educational, vocational, adaptive-life-skill, and medical interventions. It found that most studies had low strength of evidence, addressed different interventions and outcomes, and lacked replication, making it challenging to draw comparisons across therapies. Additional research is needed that includes standardized intervention protocols and outcomes, and that addresses the long-term effectiveness and harms of each intervention. Given the large number of children affected, more research is necessary to fill the current gaps in research.
ASDs affect roughly one in 88 children in the United States, and more than 55,000 teenagers between the age of 15 and 17. As children with ASD transition to adolescence and young adulthood, available research suggests that some range of medical and non-medical interventions (e.g., special education, daycare) will be required. Estimated medical and non-medical costs are as high as $3.2 million per person and $35 billion per year for the entire birth group of individuals with autism. Effective intervention strategies are a key to providing affordable care.
These findings can be found in the new research review, Interventions for Adolescents and Young Adults with Autism Spectrum Disorders, produced by the Effective Health Care Program of the Agency for Healthcare Research and Quality (AHRQ). To access this review and other materials that explore the effectiveness and risks of treatment options for various conditions, visit AHRQ's Effective Health Care Program Web site at http://www.effectivehealthcare.ahrq.gov.

Executive Summary – Aug. 27, 2012

Interventions for Adolescents and Young Adults with Autism Spectrum Disorders

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Background

Autism Spectrum Disorders (ASD) are among the most common neurodevelopmental disorders, with an estimated prevalence of 1 in 110 children in the United States having an ASD.¹ ASDs are typically diagnosed in early childhood, often at or before preschool age. The diagnosis is fundamentally behaviorally based (i.e., there is no specific genetic test or clinical/ laboratory procedure for diagnosis) and rests on documented core impairments related to social interaction, communication, as well as restricted and repetitive behavior.
Diagnoses made by clinical providers, often pediatricians, behavioral providers, child neurologists, child psychiatrists, or child psychologists, are based on documented symptom patterns in these domains. Numerous screening and diagnostic tools are available to help document and measure symptoms of autism, with research investigations increasingly utilizing such measures in combination with clinical diagnoses in order to more accurately describe, measure, and analyze the heterogeneity in presentation associated with ASD. In addition to impairments in core symptom areas, many individuals with ASD also have impaired cognitive skills, atypical sensory behaviors, or other complex medical and psychiatric symptoms and conditions, such as seizure disorders, motor impairments, hyperactivity, anxiety, and self-injury/aggression.
More than 55,000 individuals between the ages of 15 and 17 in the United States likely have an ASD.² For some individuals, core symptoms of ASD (impairments in communication and social interaction and restricted/repetitive behaviors and interests) may improve with intervention and over time^3-5; however, some degree of impairment typically remains throughout the lifespan.6 As children transition to adolescence and young adulthood, developmentally appropriate interventions to ameliorate core deficits may continue, but the focus of treatment often shifts toward promoting adaptive behaviors that can facilitate and enhance independent functioning.⁶ Treatments for some must take into account new emergent symptoms as well as engagement with new developmental challenges (e.g., independent living, vocational engagement, postsecondary education).
There is also evidence to suggest that improvements in symptoms and improvements in problem behaviors may slow down or stop after youth with ASD leave high school.⁷ This change in improvement is likely due, at least in part, to the termination of services received through the secondary school system upon high school exit, as well as the lack of adult services and long waiting lists for many services.^{7, 8} This issue of the lack of services available to help young adults with ASD transition to greater independence has been noted by researchers for a number of years and is increasingly a topic in the lay media.⁹

Interventions Used To Treat ASD

Individuals with ASD have significant impairments in social interaction, communication, and repetitive behavior. As noted, some people with ASD also have impaired cognitive skills, atypical sensory behaviors, or other complex medical and psychiatric symptoms and conditions. The expression and severity of ASD symptoms differ widely across individuals and over time. Treatments may include a range of behavioral, psychosocial, educational, medical, and complementary approaches focused on the transitional process and improving outcomes for parents/families of individuals with ASD during adolescence and adulthood.

ASD in Adolescence and Young Adulthood

Current data suggest that attainment of independent living or employment in adulthood for individuals with an ASD is variable, with factors that predict the ability to live and work independently not well elucidated.6 Research conducted to date has suggested that most individuals with ASD will require some sort of intervention, often at very intensive levels, throughout adolescence and adulthood, and the estimated costs of medical and nonmedical care (e.g., special education, daycare) are high. One study estimates that the total yearly societal per capita cost of caring for and treating a person with autism in the United States at $3.2 million and at about $35 billion for an entire birth cohort of individuals with autism.¹⁰ A study of health care utilization in a large group health plan revealed increased medication costs in older children with an ASD compared with younger children, as well as similarly aged adolescents without an ASD; other care costs were also higher in this population, including a significantly increased rate of hospitalizations.¹¹
Costs of transitional and employment programs are also high for young adults with ASD. In a recent analysis of U.S. Federal- and State-funded vocational rehabilitation programs, enrolled individuals with ASD were among the most costly of nine disability groups, with costs even higher among those with ASD and another concomitant disability. However, those with ASD had a higher rate of employment (40.8%) at the time of case closure compared with those with other disabilities, though with fewer work hours and lower wages than some other disability groups.¹²
There is no cure for ASD and no global consensus regarding which intervention strategies are most effective. Chronic management, often using multiple treatment approaches, may be required to maximize ultimate functional independence and quality of life by minimizing core ASD features, facilitating development and learning, promoting socialization, reducing maladaptive behaviors, and educating and supporting families. Investigators have noted that less data on therapies for adolescents or young adults exist than for younger children,¹³ and such research is increasingly important as the prevalence of ASD continues to grow and as children with ASD diagnoses reach adolescence.

Objectives

The goal of this review is to examine the effects of available interventions on adolescents and young adults with ASD, focusing on the following outcomes: core symptoms of ASD (impairments in social interaction, communication, and repetitive behavior); medical and mental health comorbidities; functional behaviors and independence; the transition to adulthood; and family outcomes.

Population

We focused this review on therapies for adolescents and young adults (ages 13 to 30) with ASD as well as interventions aimed at family members.

Interventions

Studies assessed interventions falling into the broad categories of behavioral, educational, adaptive/life skills, vocational, medical, and allied health approaches.

Comparators

Comparators included no treatment, placebo, and comparative interventions or combinations of interventions.

Outcomes

Intermediate outcomes included changes in core ASD symptoms and in common medical and mental health comorbidities as well as effects on functional behavior, the transition process, and family outcomes. Long-term outcomes included changes in adaptive/functional independence, academic and occupational attainment or engagement, psychological well-being, and psychosocial adaptation. We also assessed the harms of interventions, defined by the Agency for Healthcare Research and Quality (AHRQ) Effective Health Care program as all possible adverse consequences of an intervention, including adverse events (Figure A).¹⁴

Key Questions

We have synthesized evidence in the published literature to address these Key Questions:
Key Question 1: Among adolescents and young adults with ASD, what are the effects of available interventions on the core symptoms of ASD?
Key Question 2: Among adolescents and young adults with ASD, what are the effects of available interventions on common medical and mental health comorbidities (e.g., epilepsy, sleep disorders, motor impairments, obesity, depression, anxiety, acute and episodic aggression, attention deficit hyperactivity disorder, etc.)?
Key Question 3: Among adolescents and young adults with ASD, what are the effects of available interventions on functional behavior, attainment of goals toward independence, educational attainment, occupational/vocational attainment, life satisfaction, access to health and other services, legal outcomes, and social outcomes?
Key Question 4: Among adolescents and young adults with ASD, what is the effectiveness of interventions designed to support the transitioning process, specifically to affect attainment of goals toward independence, educational attainment, occupational/vocational attainment, life satisfaction, access to health and other services, legal outcomes, and social outcomes?
Key Question 5: Among adolescents and young adults with ASD, what harms are associated with available interventions?
Key Question 6: What are the effects of interventions on family outcomes?

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