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.

2017 Update to the Autism/Pervasive Development Disorders

• Update to the Report of the Recommendations – 2017 (PDF)
• Update to the Quick Reference Guide for Parents and Professionals – 2017 (PDF)
  Update to the Quick Reference Guide for Parents and Professionals – 2017 (Spanish) (PDF)
  Update to the Quick Reference Guide for Parents and Professionals – 2017 (Chinese) (PDF)
• Report of the Research – 2017 (PDF)

Clinical Practice Guideline, Report of the Recommendations - 1999

• Acknowledgment
• Table of Contents - Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children (Age 0-3 Years)
• Clinical Practice Guideline Development Panel, Autism/Pervasive Developmental Disorders
• Project Staff, Autism/Pervasive Developmental Disorders
• Foreword
• Preface: Why the Early Intervention Program is Developing Clinical Practice Guidelines

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 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.

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.