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This paper explores issues and implications for diagnosis and treatment, stemming from the growing number of children identified with autism spectrum disorders (ASDs). Recent developments and innovations in special education and Medicaid programs are emphasized. Eligibility determination policies, innovations in diagnostic practices, the cost and financing of assessment, variability among programs in diagnostic criteria, and racial/ethnic disparities in the timing of diagnosis all influence the capacity of service systems to provide diagnoses in a timely, coordinated, accurate, economical, and equitable manner. There are several barriers to the more widespread provision of intensive intervention for children with ASDs, including lack of strong evidence of effectiveness in scaled-up public programs, uncertainty about the extent of obligations to provide services under the Individuals with Disabilities Education Act, high cost of intervention, and variability among states in their willingness to fund intensive intervention via Medicaid. Innovative policy experiments with respect to financing intensive intervention through schools and Medicaid are being conducted in a number of states. © 2007 Wiley-Liss, Inc. MRDD Research Reviews 2007;13:129–135. [ABSTRACT FROM AUTHOR]

Autism is a neurodevelopmental disorder defined by impairments in social and communication development, accompanied by stereotyped patterns of behavior and interest. The focus of this paper is on the early development of communication in autism, and early intervention for impairments in communication associated with this disorder. An overview of components of communication is provided. Communication characteristics that are diagnostic of autism are summarized, with consideration of the overlap between social and communication impairment, particularly for children with autism functioning at the prelinguistic level. Early communication development and predictors of communication functioning in autism are examined, based on a review of prospective and retrospective studies. The focus of the discussion then turns to intervention. Consideration is given to the rationale for beginning intervention as early in life as possible for children with autism. Implications of motor, imitation, and play deficits for communication-based intervention are examined. Finally, issues related to the design and delivery of intervention for young children with autism are presented, along with a review of the major early intervention approaches for autism. © 2007 Wiley-Liss, Inc. MRDD Research Reviews 2007;13:16–25. [ABSTRACT FROM AUTHOR]

Research on methods to enhance and remediate the communication and language development of children with mental retardation and developmental disabilities has been ongoing since the early 1960s. Scores of studies have been conducted over this time period, the vast majority aimed at testing various procedures or intervention “packages” with relatively small numbers of children for very limited periods of time. This “technology building” period is gradually receding and the framework of a developmental model of early communication and language intervention is emerging. This model supports the use of different intervention approaches at different points in a child's development. The purpose of this paper is to describe the basic framework of this emerging model, to provide an overview of the research findings that support it, and to identify high priority areas for further investigation. MRDD Research Reviews 1997;3:358–362. © 1997 Wiley-Liss, Inc. [ABSTRACT FROM AUTHOR]

Developmental therapies in children with cerebral palsy have been a traditional mainstay of treatment. Their use is part of mandated intervention programs in every state. Until recently, however, research into the effects of these interventions has been limited both in scope and quality. This paper reviews the status of research into the effects of developmental therapies, using physical therapy in cerebral palsy as the model. Recent studies have not demonstrated consistent treatment effects in cerebral palsy, but the quantity and scope of the research is insufficient to make global statements about treatment effect. Directions for future research should include multi-center clinical trials incorporating no-treatment control groups as well as single-subject studies to generate hypotheses for larger studies. A wide variety of parameters of the subject–treatment interaction may affect treatment outcome and should be investigated. These include treatment timing, intensity, parent involvement, treatment combinations, and the profile of the child's associated disabilities. Study cohorts at extreme risk for cerebral palsy can be identified through neuroimaging and may allow evaluation of very early treatment effects. Studies evaluating a wide range of measures, including functional and economic outcomes, are necessary if decisions about program support are to based on treatment effectiveness as well as cost. MRDD Research Reviews 3:145-152, 1997. © 1997 Wiley-Liss, Inc. [ABSTRACT FROM AUTHOR]

Research over the past 50 years has yielded several promising approaches and many specific intervention techniques designed to enhance the communication and language development of young children with intellectual and developmental delays and disabilities. Yet virtually no systematic research has been conducted on the effects of different treatment intensities. We review how intervention intensity has been defined in the literature and propose a set of terms borrowed from medicine that are intended to capture the dynamic aspects of this concept as an aid to further investigation. On the basis of this approach, we propose four types of knowledge that can be generated through the systematic study of treatment intensity and discuss appropriate methods for investigating the effects of differential treatment intensities. We conclude with three recommendations for the field. © 2007 Wiley-Liss, Inc. MRDD Research Reviews 2007;13:70–77. [ABSTRACT FROM AUTHOR]

The likelihood of benefit is fundamental to decision making about newborn screening. But benefit is construed in different ways by different stakeholders. This article begins with a review of benefit as considered historically by various expert panels and organizations. We then show how 78 conditions fared when experts recently rated them on benefit using a scoring system recommended by a task force of the American College of Medical Genetics. Finally, we analyze how benefit is reflected in the public comments submitted in response to the ACMG report. Results show that benefit has been and remains a core consideration for screening decisions. Historically the focus has been on improved physical health as a result of medical treatment; however, in only 4 of the 78 conditions rated does newborn screening prevent all negative consequences. In fact the majority of both core conditions (51.7%) and secondary targets (87.5%) recommended in the ACMG report were rated as having treatments that prevented only some negative consequences. All conditions rated had perceived benefits for family and society, but currently no conditions are screened on the basis of family or societal benefits alone. No agreed-upon threshold exists for what would be considered meaningful benefit, and stakeholder groups differ in their perceptions of benefit. We conclude by suggesting several key research studies needed to further inform public policy. © 2006 Wiley-Liss, Inc. MRDD Research Reviews 2006;12:270–279. [ABSTRACT FROM AUTHOR]

In 1801, a French surgeon, began an educational intervention with an 11 year old boy that has since become a classic. The study on the boy brings out the role of early experience and the benefits of systematic instructions. In modern neurobiological terms, this case study indicated some cortical neuroplasticity well into middle childhood. Yet there remained many severe deficits and gaps in behavioral functioning that could not be overcome in the areas of language. A series of landmark studies of infants and young children in orphanages and institutions, begun in the 1930s and 1940s which raised grave concerns about the serious and lasting harm caused by the loss of a mother and subsequent care in a group setting.

Early intervention for infants and toddlers with disabilities was established as a national commitment in the form of federal legislation in 1986. Since then, we have witnessed steady growth in the number of children and families served, although the most recent report to Congress indicates that only about 1.7% of the population of infants and toddlers is served in early intervention programs. All states and territories currently are participating in this optional program. Federal regulations stipulate the components of an early intervention system that must be in place if states are to receive federal funding. However, a great deal of flexibility is allowed in how these broad regulations are implemented, resulting in considerable cross-state variability in who is served and the amount and type of services received. This article describes the current status of early intervention and discusses five issues we believe to be critical in the coming decade: (1) determining the outcomes expected of early intervention; (2) determining appropriate models and intensity of treatments; (3) factoring quality into the efficacy equation; (4) accounting for child, family, and community variables in determining efficacy; and (5) integrating emerging perspectives and knowledge from neuroscience and genetics. MRDD Research Reviews, 1999; 5:11–20. © 1999 Wiley-Liss, Inc. [ABSTRACT FROM AUTHOR]