A Manual on Adolescents and Adults with Fetal Alcohol Syndrome

By Ann Pytkowicz Streissguth and Sandra P. Randels

Fetal Alcohol Syndrome (FAS) is a major concern in communities where women drink heavily. American Indian communities appear to be particularly at risk (1). While some information is available on younger children with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE), little was known about adolescents and adults with this disorder until the present project was undertaken. This report is based on information gained from the FAS Follow-Up Study which involved assessments of 61 adolescents and adults who previously had been given a diagnosis of FAS or FAE, and interviews with their families, school teachers, and social service personnel.

This manual is directed toward those who are involved in giving care and providing services to adolescents and adults with FAS and FAE. These include both caretakers and physicians, as well as nurses, school teachers, social workers, court workers and tribal councils. While the majority of patients in the follow-up study are American Indian, the concerns regarding FAS and FAE transcend culture, race, gender, and socioeconomic status. It is our hope that the information contained herein will result in a better understanding of adolescents and adults with FAS and FAE and that this understanding of their special problems and needs will lead to more adequate planning by community agencies and better care for affected individuals. We hope that by demonstrating the lifelong impact of FAS, this manual will also encourage even more vigorous prevention and education efforts and a decrease in this preventable form of mental retardation and developmental disability.

We begin with some background information, then describe the research project, and finally present general and specific recommendations for helping adolescents and adults with FAS and their families.

• Language: English
• Publisher: Barakaldo Books
• Release date: Nov 19, 2020
• ISBN: 9781839746567

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Although in most cases we have retained the Author’s original spelling and grammar to authentically reproduce the work of the Author and the original intent of such material, some additional notes and clarifications have been added for the modern reader’s benefit.

We have also made every effort to include all maps and illustrations of the original edition the limitations of formatting do not allow of including larger maps, we will upload as many of these maps as possible.

A MANUAL ON ADOLESCENTS AND ADULTS WITH FETAL ALCOHOL SYNDROME WITH SPECIAL REFERENCE TO AMERICAN INDIANS

TABLE OF CONTENTS

Contents

TABLE OF CONTENTS 4

FOREWORD 5

EXECUTIVE SUMMARY AND RECOMMENDATIONS 9

RECOMMENDATIONS 10

ACKNOWLEDGEMENTS 13

DEDICATION 14

TABLES AND FIGURES 15

INTRODUCTION 16

BACKGROUND INFORMATION ON FETAL ALCOHOL SYNDROME 17

HISTORICAL SUMMARY 17

DIAGNOSIS OF FETAL ALCOHOL SYNDROME AND FETAL ALCOHOL EFFECTS 18

DEVELOPMENTAL STAGES OF CHILDREN WITH FAS/FAE 23

THE RESEARCH PROJECT: METHODS 26

GOALS 26

PROCEDURES 26

SAMPLE 26

TEST BATTERY 27

DATA COLLECTION AND REDUCTION 27

FINDINGS: A DESCRIPTION OF ADOLESCENTS AND ADULTS WITH FAS/FAE 28

PHYSICAL CHARACTERISTICS OF ADOLESCENTS AND ADULTS 28

FAMILY ENVIRONMENT 33

INTELLECTUAL FUNCTIONING 34

EDUCATIONAL STATUS AND ACADEMIC PROBLEMS 39

BEHAVIORAL CHARACTERISTICS 43

COPING WITH ADOLESCENTS AND ADULTS WITH FAS/FAE 50

RECOMMENDATIONS 56

TRIBAL COUNCILS AND COMMUNITY LEADERS 56

HEALTH PERSONNEL 57

SOCIAL WORKERS, COMMUNITY PERSONNEL, AND THE COURTS 59

TEACHERS AND SCHOOL PERSONNEL 61

CARETAKERS 61

EPILOGUE 64

REFERENCES 65

REQUEST FROM THE PUBLISHER 68

FOREWORD

Dear Reader:

The abuse of alcohol represents in many ways the most devastating affliction of American Indians and Alaska Natives. The publication, in 1973, by Jones and his co-workers of a description of 11 patients having fetal alcohol syndrome opened a new field of alcoholism. This manual is intended to make available in succinct form the latest information about fetal alcohol syndrome, especially that related to older children and adolescents. I believe it will serve as the basic reference manual for those interested in learning more about this preventable consequence of alcohol ingestion.

In order for this volume to adequately serve as an educational tool, it has been necessary to illustrate the effects of fetal alcohol syndrome on some of our brothers and sisters. It is my hope that you will regard those depicted in this report with the utmost gratitude, respect, and dignity for their contribution to our learning. We are indebted to them. Their participation will have been justified when we finally have eliminated alcoholism as a significant problem, not just for Indian people, but for all Americans.

Everett R. Rhoades, M.D.

Assistant Surgeon General

A MANUAL ON ADOLESCENTS AND ADULTS WITH FETAL ALCOHOL SYNDROME WITH SPECIAL REFERENCE TO AMERICAN INDIANS

prepared by

Ann Pytkowicz Streissguth, Ph.D.,

Robin A. LaDue, Ph.D., and

Sandra P. Randels, R.N., M.S.N.

from the

Department of Psychiatry and Behavioral Sciences, the Child Development-Mental Retardation Center, and the Alcoholism and Drug Abuse Institute, of the University of Washington, Seattle, Washington 98195

What is life? It is the flash of a firefly in the night. It is the breath of a buffalo in the wintertime. It is the little shadow which runs across the grass and loses itself in the sunset.

-Crowfoot{1}

Let us put our minds together and see what kind of life we can make for our children.

-Sitting Bull{2}

Some Navajo elders used to say years back that if a woman about to bear a child drinks crazy water, the newborn will be crazy in the body and the mind.{3}

EXECUTIVE SUMMARY AND RECOMMENDATIONS

The Fetal Alcohol Syndrome (FAS) Follow-Up Study evaluated 61 adolescents and adults who had previously been diagnosed FAS (70%) or had Fetal Alcohol Effects (FAE) (30%). They ranged in age from 12 to 40 years: 70% were 12 to 18 years old. Data were derived from individual assessment of patients; from interviews with caretakers, teachers, physicians, and social workers; and from review of medical and school records. Not all data were available on all patients. The following findings were important in making recommendations:

1. Average intellectual level of the 52 patients tested was considered mildly mentally retarded. The average IQ was 68; however, the range of IQ scores is very broad, from an IQ of 20 (severely retarded) to an IQ of 105 (normal range). This indicates that it is impossible to predict from the diagnosis alone how handicapped an individual patient with FAS/FAE will be as an adolescent or adult.

2. Patients with a diagnosis of the full FAS had an average IQ of 66, while those called FAE had an average IQ of 73. This indicates that the prognosis is less favorable for patients with the full syndrome, but that patients with only partial effects are also at risk for compromised intellectual functioning as adolescents and adults. No patient with FAS had an IQ over 90 on follow-up.

3. The average reading, spelling, and arithmetic level of these patients was 4th grade, 3rd grade, and 2nd grade, respectively. Average level of general adaptive functioning was 7 years, 5 months, although median age of those tested was 16 years, 5 months.

4. There was no indication of a general improvement in IQ, achievement, or adaptive living scores as patients got older.

5. Governmental services for handicapped persons are not routinely available for persons with IQ scores of 70 and above. This arbitrary cut-off could exclude 42% of these adolescents and adults with FAS/FAE from community and educational services for the handicapped.

6. The alcoholic women who were the biologic mothers of these patients had grave difficulties assuming maternal responsibility: 31% of the patients had never been cared for by their biologic mothers. For those who went home after birth with their biologic mothers, the average age at which they stopped living at home was 3 years, 10 months.

7. Risk of premature death is apparently a major problem in women whose children have FAS/FAE: 69% of the biologic mothers were known to be deceased.

8. Most of the patients (77%) did not live