Establishing a Translational Science for Autistic Spectrum Disorders for Children and Their Families: Optimizing Function, Participation, and Well-Being
Article Outline
- What Did this Analysis Reveal?
- Was the Evidence Persuasive and Statistically Significant for Improved Outcomes for ABI with Appropriate Measures?
- What are the Community, Educational, and Policy Lessons?
- What are the Implications for Pediatricians, Developmental Psychologists, Educators, and Allied Health Professionals?
- Acknowledgment
- References
- Copyright
Abbreviations: ABI, Applied behavior interventions, ASD, Autism spectrum disorder, PEDro, Physiotherapy Evidence Database
In the United States, there are >20 million children aged 2 to 6 years. Community studies have demonstrated that between 1 in 150 and 1 in 300 of these preschool children have criteria for an Autism spectrum disorder (ASD).1 Thus, >125 000 children have challenges in communication, social skills, and adaptive behaviors. Dissemination of the developmental checklist (eg, First Signs: http://www.firstsigns.org/ and American Academy of Pediatrics Autism Tool Kit) has increased the early diagnosis of children with ASD.2 However, health professionals and the families they serve often face challenges in accessing developmental and behavior interventions that may optimize learning, functioning, and participation.
See related article, p 338
Two important frameworks for addressing these concerns exist in an era in which resources are fragmented and scarce. The first comes from a panel of the National Academies of Science (http://www.nationalacademies.org/) that synthesized the best multidisciplinary information to guide identification, intervention, education, and family support systems for children with these neurodevelopmental disorders. Specifically, this panel asserted that children with ASD require 25 hours of structured interventions by trained professionals to address their communicative, social, and adaptive-behavioral challenges.3 The second framework is to critically examine the available evidence by using the guidelines of the Cochrane Developmental Psychosocial and Learning Problems Review Group or similar Developmental Medicine Interdisciplinary Groups (eg, Treatment Outcomes, Committee of the American Academy of Cerebral Palsy and Developmental Medicine: http://www.aacpdm.org/).
As reported in this issue of The Journal, Sprechley and Boyd have undertaken this task by synthesizing the medical, behavioral, and education intervention literature for the past 25 years for preschool children (age 18 months-6 years) with autistic spectrum or pervasive developmental disorders.4 They examined studies with behavioral therapy or early childhood interventions in which a randomized or quasi-randomized control study design was used. It is important for pediatricians and other health professionals to realize that this approach excludes from analysis all uncontrolled studies and testimonial material.
The interventions used in these studies focused on the discrete trial learning paradigm or applied behavior interventions (ABI) that were delivered by trained parents/caregivers, psychologists, educators, or habilitative professionals (speech, occupational, or physical therapists).5 Thirteen studies meeting the inclusion criteria were found. The Physiotherapy Evidence Database (PEDro) scale for scientific quality was applied independently to each of these studies by the 2 authors. Because it was not possible to blind the children receiving or the therapist delivering these interventions, the maximum PEDro score is 9. Six studies that involved 76 children had PEDro scores ≥6 and were analyzed for cognitive, communicative, and adaptive behavioral outcomes. This in itself is a critically important discovery. Specifically, the number of children who were comprehensively examined after receiving comparative interventions was small.
What Did this Analysis Reveal?
First, in the 2 preschool trials, interventions began near the third birthday and continued for 2 to 4 years. In these studies, >30 hours of ABI were given weekly. Parents who were trained in ABI served as the comparison group. Thus, interventions did not involve a “no treatment” group.
Second, in the 2 kindergarten studies, children were enrolled at 5.5 years old and received ≥1 year of ABI of 18 to 28 hours per week. These children were compared with children who received eclectic developmental interventions of a similar intensity. In both trials, developmental gains took place.
Was the Evidence Persuasive and Statistically Significant for Improved Outcomes for ABI with Appropriate Measures?
Across adaptive-behavior, expressive language, and cognition, the standard mean difference was between 0.3 and 0.38 in favor of ABI. However, in none of these dimensions was the evidence statistically significant (P ≥ .10).
What are the Community, Educational, and Policy Lessons?
First, without easy access to comprehensive quality interventions, we will not know what interventions work best and what may be harmful. Specifically, the current ABI literature already acknowledges that children having assets in verbal understanding, joint attention, and nonverbal cognition are the children who are the most likely to make the most gain.
Second, on a policy level, few states in this era of scarce resources have provided appropriate educational and family support systems for all preschool children with an ASD. More than 2 decades ago, Lovaas et al demonstrated that children who received intensive preschool interventions (ABI >30 hours per week between 1 child and 1 therapist) gained in cognition and required less special education resources.6 This intervention is estimated to cost $50
000 per year. When given as the preferred and only intervention to all children aged 18 months to 6 years with ASD, the cost would exceed 5 billion dollars per year. This is in addition to dietary supplements, special diets, and fear of immunization that add extra costs and lead to missed preventive medicine opportunities.7 Before this intensity of intervention is undertaken, much larger multicenter clinical trials are required.
Third, until proven otherwise, children with challenges in communication, play, and social behaviors require approaches that help in manageability at home and in accessing comprehensive full-day preschool educational programs. This was the consensus of the National Academy of Science.3 It can be delivered through combinations of preschool, habilitative, and community services.
What are the Implications for Pediatricians, Developmental Psychologists, Educators, and Allied Health Professionals?
First, listen to family concerns. In this era of scarcity, compassion and science are desperately needed.8 Second, advocate for and insist on access to quality preschool interventions. Autism Speaks (http://www.autismspeaks.org/) and other advocacy groups are important allies in this effort. In our outcomes assessments, it is critically important to measure caregiver physical and mental health, sibling physical and mental health, and impact on family life. In this way, we will better understand how our interventions optimize the child's functioning and participation across settings, while we address the gaps in funding and the need for both basic and translational research. This multidisciplinary perspective allows us to be allies with parents and developmental professionals as we work together in moderating the challenges of this complex, but not hopeless or unchanging, disorder.9
The author is grateful to the developmental psychologists, occupational and speech therapists, and early child educators and social workers who are part of the University of Chicago Early Intervention team and the Advocate Masonic Autism Treatment Program.
References
- . Prevalence of autism spectrum disorders—autism and developmental disabilities monitoring network, 14 sites, United States, 2002. MMWR Surveill Summ. 2007;56:12–28
- . Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007;120:1183–1215
- . Educating children with autism. Washington DC: National Academy Press; 2001;
- . Efficacy of applied behavioral intervention in preschool children with autism for improving cognitive, language, and adaptive behavior: a systematic review and meta-analysis. J Pediatr. 2009;154:338–344
- . Intensive behavioral treatment for preschoolers with severe mental retardation and pervasive developmental disorder. Am J Ment Retard. 1997;102:238–249
- . Behavioral treatment and normal educational and intellectual functioning in young autistic children. J Consult Clin Psychol. 1987;55:3–9
- . Alternative complementary approaches to treatment of children with autistic spectrum disorders. Infants Young Child. 2002;14:33–42
- . Communicating about autism (Decreasing fears and stresses through parent-professional partnerships). Infants Young Child. 2008;21:256–271
- . Helping children with autism learn (Treatment approaches for parents and professionals). New York: Oxford University Press; 2003;
Supported in part by a Maternal and Child Health Grant, “Illinois Lend” (HRSA-08-148).
PII: S0022-3476(08)00951-7
doi:10.1016/j.jpeds.2008.10.039
© 2009 Mosby, Inc. All rights reserved.
Refers to article:
- Efficacy of Applied Behavioral Intervention in Preschool Children with Autism for Improving Cognitive, Language, and Adaptive Behavior: A Systematic Review and Meta-analysis , 28 October 2008
