Autism Speaks
On April 3, 2009, public testimony on comparative effectiveness
research was given at a meeting of the National Advisory Council
for Healthcare Research and Quality. The testimony represents
the views of the presenter and not necessarily those of the Agency
for Healthcare Research and Quality (AHRQ) or the Department
of Health and Human Services (HHS).
The Council provides advice and recommendations to the Director,
AHRQ, and to the Secretary, HHS, on priorities for a national
health services research agenda.
The full completed topic
nomination form has been submitted to the Effective Health
Care Program and will appear in the Effective Health Care
Program Web site public reading room at http://effectivehealthcare.ahrq.gov/getInvolved.cfm?involvetype=rs.
In the area of autism research, the vast majority of clinical
trials conducted to date have addressed only the questions of
how an individual treatment compares to a placebo. Extremely
few studies have been conducted that make head-to-head comparisons
of two or more treatments. Indeed, in reviewing the list
of existing Effective Health Care Program funded projects, it
is noteworthy that none addresses autism spectrum disorders (ASD).
Given the very high prevalence of ASD and the fact that ASD is a life-long
condition that costs the US approximately $35 billion annually,
it is crucial that research identifying the most effective treatments
of ASD be conducted. The following are some of the high
priority questions that such research could address:
- Understanding the combined effectiveness of medical and behavioral treatments
for improving outcomes for individuals with ASD. To
date, there have been few, if any, studies that have examined
the comparative effectiveness of psychopharmacological or other
medical treatments when they are administered alone versus combined
with behavioral/psychosocial interventions for reducing core
or associated symptoms. The following are examples of projects
that are needed:
- For individuals with ASD who present with severe aggression
and irritability, what is the comparative efficacy of a pharmacological
treatment versus a pharmacological treatment combined with
functional behavioral analysis versus functional behavioral
analysis alone for reducing such challenging behaviors?
- For children with ASD whose condition is not improving
in response to behavioral intervention, what is the comparative
effectiveness of conducting a comprehensive medical evaluation
to detect and treat commonly associated medical conditions
(e.g. sleep disorder, dietary and/or nutritional deficiencies,
GI conditions, and allergies) versus continuing behavioral
intervention without such medical assessments and interventions?
- Understanding the key effective ingredients of early behavioral intervention.
Tremendous financial, feasibility, and accessibility challenges are
involved in the provision of early intensive behavioral intervention
for young children with ASD. Yet, no studies to date have
examined the comparative effectiveness of key elements of
early behavioral intervention. Among the high priority questions that need
to be addressed are:
- What is the comparative effectiveness of lower versus higher
"doses" of early behavioral intervention (e.g. 15 versus
25 hours per week; 2 versus 4 years) for improving long term outcome?
- What is the comparative effectiveness of early behavioral
intervention implemented by highly trained professionals
(e.g. Ph.D. Psychologist) versus parents for reducing
autism symptoms and improving language, cognitive, and
social abilities?
- What is the comparative
effectiveness of two different models of early behavioral
intervention (for example, traditional applied behavior
analytic early intervention programs versus developmental
behavioral early intervention programs) for reducing
autism symptoms and improving language, cognition, and
social behavior in children with ASD?
- For children with ASD who fail to develop communicative speech in
response to early behavioral intervention, what is the comparative
effectiveness of continuing with traditional early intervention
approaches versus adding computer-assisted communication
augmented devices for improving communication skills?
- Treating commonly associated medical conditions in ASD. ASD is commonly
associated with medical conditions, such as sleep, GI, psychiatric,
and other co-morbidities, that have a significant impact on quality
of life. Yet, little is known regarding the most effective treatments
to address such co-morbidities. The following are examples of the types
of studies that need to be conducted:
- What is the comparative effectiveness of cognitive behavioral treatment
versus cognitive behavioral treatment plus a pharmacological treatment versus
pharmacological treatment alone in reducing depressive or anxiety
symptoms in adolescents and adults with ASD?
- For individuals with ASD presenting with sleep difficulties, what is the
comparative effectiveness of sleep hygiene program versus
a combination of sleep hygiene with melatonin versus melatonin
alone in reducing sleep-related problems?
- Assessment of the comparative effectiveness of
currently implemented community/school based treatment/educational
programs. There are many treatment/educational programs
that are currently being utilized in the community. Although
individually many of these programs have been shown to be effective
for promoting positive outcomes, there have been no studies
that have compared whether one program is more effective than
another. Examples of such programs include:
- Early behavioral intervention programs administered through the
public schools or private agencies
- Programs for promoting social, language, and cognitive skills for
school age children
- Programs to facilitate transition to adulthood, focusing on
vocational and employment related skills
- Programs designed to promote success for high functioning adults
with ASD attending college
Return to Contents
540 Gaither Road Rockville, MD 20850 