Report of the Recommendations - Autism / Pervasive Developmental Disorders

Assessment and Intervention for Young Children (Age 0-3 Years)

Sponsored by New York State Department of Health Early Intervention Program

This guideline was developed by an independent panel of
professionals and parents sponsored by the New York State
Department of Health, Early Intervention Program.

Clinical Practice Guideline, Report of the Recommendations

Ordering Information

Single copies of the guideline publications are available free of charge to residents of New York State. Multiple copies are available free of charge to New York State Early Intervention providers and municipal officials for use with parents and staff. To order, contact:

Publications
New York State Department of Health
P.O. Box 2000
Albany, New York 12220

A small fee will be charged to cover printing and administrative costs for orders placed by non-residents of New York State and for multiple copies requested by other than those above. To order, contact:

Health Education Services
P.O. Box 7126
Albany, New York 12224

Mastercard and Visa accepted via telephone: 518-439-7286.

  1. Clinical Practice Guideline: Report of the Recommendations. Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children (Age 0-3 Years). 5½" x 8½", 322 pages. 1999 Publication No. 4215
  2. Clinical Practice Guideline: Quick Reference Guide. Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children (Age 0-3 Years). 5½" x 8½", 108 pages. 1999 Publication No. 4216
  3. Clinical Practice Guideline: The Guideline Technical Report. Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children (Age 0-3 Years). 8½" x 11", 434 pages. 1999 Publication No. 4217

For permission to reprint or use any of the contents of this guideline, or for more information about the NYS Early Intervention Program, contact:

NYS Department of Health, Early Intervention Program
Corning Tower Building, Room 208
Empire State Plaza, Albany, New York 12237-0618
(518) 473-7016

www.health.state.ny.us/community/infants_children/early_intervention/index.htm

The New York State Department of Health gratefully acknowledges the contributions of individuals who have participated as consensus panel members and peer reviewers for the development of this clinical practice guideline. Their insights and expertise have been essential to the development and credibility of the guideline recommendations.

The New York State Department of Health Early Intervention Program especially appreciates the advice and assistance of the New York State Early Intervention Coordinating Council and Clinical Practice Guidelines Project Steering Committee on all aspects of this important effort to improve the quality of early intervention services for young children with autism/pervasive developmental disorders and their families.

The contents of the guideline were developed under a grant from the U.S. Department of Education. However, the contents do not necessarily represent the policy of the Department of Education, and endorsement by the federal government should not be assumed.

The New York State Early Intervention Program does not discriminate on the basis of handicap in admission, or access to, or treatment or employment in, its program and activities.

If you feel you have been discriminated against in admission, or access to, or treatment or employment in the New York State Early Intervention Program, you may, in addition to all other rights and remedies, contact Donna M. Noyes, Ph.D., Director, Early Intervention Program, New York State Department of Health, Room 208, Corning Tower Building, Empire State Plaza, Albany, NY 12237-0618.

Table of Contents: Autism/Pervasive Developmental Disorders Assessment and Intervention for Young Children (Age 0-3 Years)

Preface: Why the Early Intervention Program is Developing Clinical Practice Guidelines

Introduction
  • Scope of the Guideline
  • Definition of Autism
  • Definition of Other Major Terms
  • The Importance of Using Scientific Evidence to Help Shape Practice
  • Strength of Evidence Ratings for Guideline Recommendations
  • Using Scientific Evidence as the Basis for Clinical Decision-Making
  • Periodic Guideline Revisions
  • Guideline Versions

Background: Understanding Autism

Assessment Methods for Young Children with Possible Autism
  • General Approach for Assessing Young Children with Possible Autism
  • Early Identification of Young Children with Possible Autism
  • Screening Tests for Autism
  • Autism Assessment Instruments
  • The Developmental Assessment for Young Children with Possible Autism
  • Health Evaluations for Young Children with Possible Autism

Intervention Methods for Young Children with Autism
  • General Approach to Interventions for Young Children with Autism
  • Behavioral and Educational Approaches
  • Other Experiential Approaches
  • Medication and Diet Therapies

Appendices

  1. Methodology Tables
  2. Summary of Evidence - Assessment
  3. Summary of Evidence - Intervention
  4. Tests of General Development for Young Children
  5. New York State Early Intervention Program
    • Relevant Early Intervention Policy
    • Program Description
    • Early Intervention Program Definitions
    • Local Numbers for County Early Intervention Programs

  6. Peer Reviewers
  7. Additional Resources

Subject Index

Autism/Pervasive Developmental Disorders
Clinical Practice Guideline Development Panel

 
Harold Alan Kanthor, MD
Guideline Panel Chairman
Rochester, New York
 
Stephen Anderson, PhD
Language Development Program
Tonawanda, New York
 
Stephen Bauer, MD
Developmental Unit
The Genesee Hospital
Rochester, New York
 
Mary P. Bergin, CAS, CCC-SLP
Speech-Language and
  Audiology Services
Monroe #1 Boces
Fairport, New York
 
Marlene Breitenbach, MS Ed
Intensive Learning Program
The Childrens Annex
Kingston, New York
 
Patricia Calandra
Wading River, New York
 
Christine Clarke, MS
Just Kids Learning Center
Middle Island, New York
 
Ira L. Cohen, PhD, FAPS
Department of Psychology
NYS Institute for Basic Research
Staten Island, New York
Carroll J. Grant, PhD
Margaret L. Williams
  Developmental Evaluation Center
Syracuse, New York
 
Margaret Kuhn
Lowville, New York
 
Gloria Lucker, MS, OTR/L, FAOTA
Optimal Therapy Associates
Buffalo, New York
 
Margaret Oldendorf
Schenectady, New York
 
Michael Palone III, RPh
Strong Memorial Hospital
Rochester, New York
 
Richard Perry, MD
NYU Medical Center and
Bellevue Hospital
New York, New York
 
Christine Radziewicz, DA, CCC-SLP
School for Language and
  Communication Development
North Merrick, New York
 
Raymond G. Romanczyk, PhD
Institute for Child Development
SUNY Binghamton
Binghamton, New York
 
Ellen Woodward, CSW
Early Childhood Division
Developmental Disabilities Institute
Huntington, New York

 

 

 

Autism/Pervasive Developmental Disorders
Project Staff

Project Director
Demie Lyons, RN, PNP
PharMark Corporation
Lincoln, Massachusetts

Director of Research/Methodologist
John P. Holland, MD, MPH
Seattle, Washington

Senior Research Associate
Mary M. Webster, MA, CPhil
Seattle, Washington

Research Associates
PharMark Corporation
Beth Martin, MLIS

Celeste Nolan, MS

Seattle, Washington
Carole Holland, BA

SUNY Binghamton
Tamara Weiner, MA
Meredith Cochran, BA

Topic Advisors
Michael Guralnick, PhD
University of Washington
Seattle, Washington

Writers/Copy Editors
Patricia Sollner, PhD
Winchester, Massachusetts

Diane Forti, MA
Dedham, Massachusetts

Meeting Facilitator
Angela Faherty, PhD
Portland, Maine


Department of Health

Department of Health Project Manager
Donna M. Noyes, PhD
Director
Early Intervention Program

 

 

 


Foreword

Providing an optimal program of early intervention for young children with developmental disabilities and their families requires knowledge of the most current information on research and practice. However, analyzing research studies and determining their relevance to practice can be a perplexing task even for the professional. Differing methodologies and conceptual frameworks often make it difficult to judge the quality of the research and to discern outcome patterns that can and should influence practice.

Despite the fact that this is a difficult task, practice guidelines based on a sophisticated and rigorous analysis of the extant research literature can convey essential information for the design and implementation of optimal early intervention programs. The Clinical Practice Guideline for Autism/Pervasive Developmental Disorders has been the result of just such a sophisticated and methodologically sound approach to accurately gather and summarize information based on the available evidence.

This document provides an extraordinarily thoughtful and balanced presentation of the critical issues in assessment and intervention for this group of children. There is no doubt in my mind that readers will find the Guideline to be a valuable resource, as it will allow numerous individuals with different levels of expertise to gain a firm understanding and make highly informed decisions with respect to assessment and intervention for young children with autism and pervasive developmental disorders.

MICHAEL J. GURALNICK, Ph.D.
University of Washington

 

 


Preface:

Why the Early Intervention Program is Developing Clinical Practice Guidelines

In 1996, a multi-year effort was initiated by the New York State Department of Health (DOH) to develop clinical practice guidelines to support the efforts of the statewide Early Intervention Program. As lead agency for the Early Intervention Program in New York State, the DOH is committed to ensuring that the Early Intervention Program provides consistent, high-quality, cost-effective, and appropriate services that result in measurable outcomes for eligible children and their families.

This guideline is a tool to help assure that infants and young children with disabilities receive early intervention services consistent with their individual needs, resources, priorities, and the concerns of their families.

The guideline is intended to help families, service providers, and public officials by offering recommendations based on scientific evidence and expert clinical opinion on effective practices for the following:

  • Early identification of children at risk or suspected of having a disability through routine developmental surveillance and screening targeted to identify specific disabilities.
  • Provision of multidisciplinary evaluations and assessments that result in reliable information about a child's developmental strengths and needs and, when possible, a diagnosis.
  • The determination of effective intervention strategies and reaching agreement on the frequency, intensity, and duration of early intervention services that will lead to positive outcomes for children and families.
  • The measurement of outcomes achieved.

The impact of clinical practice guidelines for the Early Intervention Program will depend on their credibility with families, service providers, and public officials. To ensure a credible product, the DOH elected to use an evidence-based, multidisciplinary consensus panel approach. The methodology used for these guidelines was established by the Agency for Health Care Policy and Research (AHCPR). The DOH selected the AHCPR model for this effort because it is an effective, scientific, and well-tested approach to guideline development.

The DOH has worked closely with the State Early Intervention Coordinating Council throughout the guideline development process. A state-level steering committee of early intervention officials, representatives of service providers, and parents was also established to advise the department of this initiative. A national advisory group of experts in early intervention has been available to the department to review and to provide feedback on the methodology and the guideline. Their efforts have been crucial to the successful development of this guideline.

Overview of the Early Intervention Program

The New York State Early Intervention Program is part of the national Early Intervention Program for infants and toddlers with disabilities and their families, first created by Congress in 1986 under the Individuals with Disabilities Education Act (IDEA). IDEA is also the federal law that ensures all children and youth ages 3 to 21 years with disabilities the right to a free, appropriate education. In New York State, the Early Intervention Program is established in Article 25 of the Public Health Law and has been available to all eligible infants and toddlers and their families since July 1, 1993.

To be eligible for services, children must be under 3 years of age and have a confirmed disability or established developmental delay in one or more areas of the following areas of development: physical, cognitive, communication, social-emotional, and adaptive development.

The Early Intervention Program offers a variety of therapeutic and support services to infants and toddlers with disabilities and their families, including: family education and counseling, home visits, and parent support groups; special instruction; speech pathology and audiology; occupational therapy; physical therapy; psychological services; service coordination; nursing services; nutrition services; social work services; vision services; and assistive technology devices and services.

Major provisions of the New York Public Health Law that govern the Early Intervention program require:

  • Local administration of the program by an Early Intervention Official (EIO) designated by the chief elected official of each of the fifty-seven counties and New York City. The EIO is responsible for ensuring eligible children and families receive the services included in the Individualized Family Service Plan (IFSP) that is developed for the child and family.
  • Identification and referral of children at risk or suspected of disability by primary referral sources (including physicians and other health-care providers).
  • Periodic developmental screening and tracking of at-risk children.
  • Provision of service coordination services to eligible children and their families.
  • A multidisciplinary evaluation of children referred to the program, at no cost to families, to determine eligibility.
  • Individualized Family Service Plans (IFSP) for eligible children and their families.
  • Provision of early intervention services as specified in the IFSP at no cost to the family.
  • Delivery of services in natural settings in the community where peers are typically found to the maximum extent appropriate.

The mission of the Early Intervention Program is to identify and evaluate as early as possible those infants and toddlers whose healthy development is compromised and provide for appropriate intervention to improve child and family development. The program goals are to:

  • Support parents in meeting their responsibilities to nurture and to enhance their children's development.
  • Create opportunities for full participation of children with disabilities and their families in their communities by ensuring services are delivered in natural environments to the maximum extent appropriate.
  • Ensure early intervention services are coordinated with the full array of early childhood health and mental health, educational, social, and other community-based services needed by and provided to children and their families.
  • Enhance child development and functional outcomes and improve family life through delivery of effective, outcome-based high quality early intervention services.
  • Ensure early intervention services complement the child's medical home by involving primary and specialty health care providers in supporting family participation in early intervention services.
  • Assure equity of access, quality, consistency, and accountability in the service system by ensuring clear lines of public supervision, responsibility, and authority for the provision of early intervention services to eligible children and their families.

New York State Public Health Law designates the Department of Health as the lead agency for this statewide program. As the lead agency, the DOH is responsible for the overall supervision and administration of the Early Intervention Program. Responsibilities include:

  • Implementing statewide policies, procedures and programmatic and reimbursement regulations.
  • Implementing a comprehensive public awareness and child-find system.
  • Approving, compiling, and disseminating lists of approved service coordinators, evaluators, and service providers.
  • Providing training and technical assistance to municipalities and service providers to enable them to identify, locate, and evaluate eligible children; developing individualized family service plans; ensuring the appropriate provision of early intervention services; and promoting the development of new services where there is a demonstrated need.
  • Safeguarding parent and child rights under the Early Intervention Program.
  • Establishing and maintaining an Early Intervention Coordinating Council to advise and assist the department in program implementation.
The Department of Health sponsored the development of these guidelines for the Early Intervention Program as a part of its mission to make a positive contribution to the quality of care for children with disabilities in New York State.

 

EIP v

Throughout the document, information about
relevant Early Intervention Program (EIP)
policy is presented in boxes with this symbol.
The relevant policy information can be found
in Appendix E.

 

Clinical Practice Guideline

Report of the Guideline Recommendations

Autism / Pervasive
Developmental Disorders

Assessment and Intervention
for
Young Children (Age 0-3 Years)

The Clinical Practice Guideline: Report of the Recommendations provides the full text of the recommendations and a summary of the evidence supporting the recommendations.

A more complete description of the methodology used to develop the recommendations and a review of the articles cited as evidence can be found in The Guideline Technical Report