When Down Syndrome and Autism Intersect: A Guide to DS-ASD for Parents and Professionals

When Down Syndrome and Autism Intersect: A Guide to DS-ASD for Parents and Professionals

by Margaret Froehlke, Robin Zaborek

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Overview

While it's well known that the incidence of autism spectrum disorders (ASD) is skyrocketing in the general population, it's less well known that ASD is even more common in people with Down syndrome.

When Down Syndrome and Autism Intersect offers a thorough examination of the unique profile of a Down Syndrome-Autism Spectrum Disorder (DS-ASD) diagnosis and best practices for screening, treatment, and caretaking through the lifespan. This one-stop resource, the first of its kind, will greatly benefit families whose child is already diagnosed, and also those who suspect something more than Down syndrome. Professionals, too, will find information on how to distinguish DS-ASD from a diagnosis of just Down syndrome, and guidance on providing services for children and adults.

The editors and chapter authors are seasoned parents, advocates, doctors, dentists, psychologists, behavior analysts, nurses, educators, and financial planners. They share their experiences and expertise on the following topics:

  • Diagnosis
  • Emotional Adjustment & Getting Support
  • Genetics
  • Medical Concerns (health problems common in Down syndrome and ASD, conditions that can be missed when ASD is not recognized—reflux, pneumonia, hypothyroidism)
  • When Autism is Suspected for Teens and Adults with DS (often misdiagnosed as mental health problems)
  • Making the Most of Doctor Visits (coordinated, team approach to care)
  • What Autism Looks Like in a Child with Down Syndrome (comparing behavior of kids with DS-only to that of kids with DS-ASD at different ages using case studies)
  • Oral Health (tips & strategies to ensure cooperation during dental visits)
  • Behavioral Treatments for Sleep Problems
  • Care Coordination (the management of a child's needs across the entire care continuum)
  • Addressing Problem Behaviors
  • Designing Educational Programs
  • Multicultural Challenges (best practices to serve the needs of minority populations)
  • Life Planning (legal, financial, and quality-of-life issues)

Parents and professionals who previously had to piece together information about DS-ASD from sources about each separate condition can now rely on this groundbreaking book to understand and navigate the complexities and challenges of DS-ASD.

Product Details

ISBN-13: 9781606131602
Publisher: Woodbine House
Publication date: 12/17/2012
Pages: 240
Product dimensions: 6.90(w) x 9.90(h) x 0.50(d)

About the Author

Margaret Froehlke is a Registered Licensed Nurse in Colorado and the mother of four children, one of whom has both Down syndrome and autism spectrum disorder (DS-ASD). Ms. Froehlke worked as Executive Director of the Denver Adult Down Syndrome Clinic, and is now on staff with Adam's Camp, a provider of therapeutic and adventure programs for kids and adults with developmental disabilities, based in Denver. She is also the author of Mass, A Guide for Visual Learners, a book designed to assist persons with ASD in attending the Catholic Mass.

Robin Zaborek is a proud mother of four children, including an adult son with Down syndrome and a teenage daughter with Down syndrome and autism (DS-ASD), Janet Kay, who passed away during the final stages of writing this book. Ms. Zaborek is a CDA (Child Development Associate) and CNA (Certified Nurse's Assistant), and she is a long-time advocate for people with developmental disabilities. She is a co-founder of the Down Syndrome-Autism Connection?, whose mission is to provide support and education to families and professionals impacted by DS-ASD.

Table of Contents

Foreword Susan Merrill xi

Introduction Margaret Froehlke Robin Zaborek xv

Chapter 1 Introduction to the DS-ASD Diagnosis: One Family's Journey Robert Froehlke Margaret Froehlke 1

Chapter 2 But I Was Just Getting Used to Holland: Adjusting to the Autism Diagnosis Sarah A. Hartway 13

Chapter 3 The Genetics of Down Syndrome and Autism Spectrum Disorder Ellen Roy Elias 21

Chapter 4 Medical Concerns in Individuals with DS-ASD Fran Hickey 31

Chapter 5 When Autism Is Suspected for Teens and Adults with Down Syndrome Dennis McGuire Elina Manghi Brian Chicoine 41

Chapter 6 Getting the Most Out of Your Doctor Visits: Advice for Parents and Healthcare Providers Laura Pickler Kimberly Bonello 63

Chapter 7 What Autism Looks Like in a Child with Down Syndrome: The Behavioral Phenotype Susan Hepburn Deborah J. Fidler 71

Chapter 8 Oral Health Care: Finding the Way for a Child with Down Syndrome-Autism Spectrum Disorder David A. Tesini Kristi Seibel 97

Chapter 9 Behavioral Treatments for Sleep Problems in Individuals with DS-ASD Terry Katz Ann Reynolds 109

Chapter 10 The Importance of Care Coordination for Children with DS-ASD Cordelia Robinson 129

Chapter 11 Addressing Problem Behaviors in Individuals with DS-ASD Sam Towers 141

Chapter 12 Designing Educational Programs for Students with DS-ASD Patricia McVay 165

Chapter 13 Multicultural Challenges: Co-Occurring Down Syndrome and Autism Elina R. Manghi 187

Chapter 14 Life Planning for Individuals with DS-ASD Hal Wright 201

Chapter 15 Finding Support and Encouragement for the Journey: Advice from a Seasoned Parent Robin Zaborek 213

About the Contributors 219

Acknowledgments 227

Index 229

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