Adults and Adolescents with Autism: A Study of Family Caregiving
 

Report #4:
 Recommended Resources from Families of Adolescents
and Adults with an Autism Spectrum Disorder
(2002)
 



- Principal Investigators -

Marsha Mailick Seltzer, Ph.D.
Waisman Center
University of Wisconsin - Madison

Marty Wyngaarden Krauss, Ph.D.
Heller School for Social Policy and Management
Brandeis University
 

Project Staff

 

Co-Investigators
Jan Greenberg, Ph.D.
Gael Orsmond, Ph.D.
Sandra Magana, Ph.D.

Project Managers
Renee Makuch
Dotty Robison

Interviewers
Sandy Evans
Amy Sue Hartman
Nancy Ishikawa
Jill Levenhagen
Tracy Mazzeo
Amy Mitchell

 

Graduate Research Assistants
Mara Glickman
Heather Jacobson, M.A.
Paul Shattuck, M.S.
April Smith Swe, M.S.W.
Paul Symons, M.B.A.

Research Associate
Jinkuk Hong, Ph.D.

Student assistants
Lynn Au
Emily Baxter
Emily Beckman
Meaghan Dolan

 

Acknowledgements

This project is supported by grants from the National Institute on Aging (R01 AG08768) and the Rehabilitation Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago (H133B30069), funded by National Institute on Disability and Rehabilitation Research. We gratefully acknowledge the support from the Graduate School of the University of Wisconsin-Madison and the Nancy Lurie Marks Foundation that helped to launch this research. Administrative support for the study is provided by the Waisman Center at the University of Wisconsin-Madison and the Starr Center at the Heller School for Social Policy and Management, Brandeis University.

We are extremely grateful to the families of the 405 adolescents and adults who have given so generously of their time and shared their lives with us.
  Table of Contents

Section I: Introduction

Section II: Resources

Section I: Introduction

Since our study began in 1998, many families have asked us for advice or resources they could reference in order to help them learn more about their son or daughter's autism spectrum disorder. With over 400 families participating in our research, we decided to ask parents if there were any books, movies or other materials they have found to be particularly helpful and would recommend to other families. We have compiled that information in this booklet. The inclusion of any resource or web site link in this booklet does not imply endorsement.

Thank you for all of your suggestions! We hope you find this to be useful!

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Section II: Resources

Books & Authors

  • The Bible

  • Attwood, Tony    

    • Aspergers Syndrome: A Guide for Parents and Professionals

  • Barron, Judy & Sean

    • There's a Boy in Here

  • Becker, Wesley    

    • Parents are Teachers- A Child Management Program

  • Bombeck, Erma    

    • Motherhood, 2nd Oldest Profession

  • Boss, Pauline    

    • Ambiguous Loss

  • Chopin, Kate    

    • The Awakening

  • Coleman, Daniel    

    • Emotional Intelligence

  • Copeland, J.

    • For the Love of Ann

  • Cutler, Barbara

    • Unraveling the Special Education Maze

    • You, Your Child and Special Education

  • Dilacato, Carl

    • The Ultimate Stranger

  • Dillion, Ruttler

    • Living with Autism

  • Donellen, Anne & Leary, Martha

    • Movement Differences & Diversity in Autism

  • Dornbush, M. & Pruitt, S.

    • Teaching the Tiger

  • Featherstone, Helen

    • A Difference in the Family

  • Frith, Uta Autism:

    • Explaining the Enigma

  • Garza, C. & Zubizarreta, R.

    • Cuadros de familia/Family Pictures

  • Gehret, Jeanne Eagle

    • Eyes: A Child's Guide to Paying Attention

  • Gill, Barbara

    • Changed by a Child: Companion Notes for Parents of a child with a disability

  • Gillingham, Gail

    • Autism: Handle with Care

  • Giplin, Wayne

    • Laughing and Loving with Autism

  • Grandin, Temple

    • Children with Autism

    • Emergence

    • Labeled Autistic

    • Thinking in Pictures

  • Greenfield, Josh

    • 1. A Child Called Noah

    • 2. A Place for Noah

  • Happe, Francesca

    • Autism: An Introduction to Psychological Theory

  • Harrington, Kathy

    • How to be Paparo

  • Harris, Sandra

    • Siblings of Children with Autism

  • Hart, Charles

    • Without Reason

  • Hart, C.J. & Zion, C.

    • A Parents Guide to Autism

  • Huff, Holly L.

    • Jewel

  • Jenson Public School

    • A Parents Guide to Autism

  • Kalmeyor, David

    • Social Stories Book

  • Kaufman, Barry Neil

    • Son Rise

  • Kranowitz, Carol S.

    • The Out of Sync Child

  • Leary, M. & Donellen, A.

    • Movement Disorder

  • Lehr, Sue & Lehr, Ben

    • If You Look in Their Eyes, You Know

  • Lovett, Herb

    • 1. Cognitive Counseling for Persons with Special Needs

    • 2. Learning to Listen

  • MacDonnell, Jane Taylor

    • News from the Border

  • Maurice, Catherine

    • Let Me Hear Your Voice

  • Maurice, C. (Ed.)

    • Behavioral Intervention for Young Children with Autism

  • McKean, Thomas et al

    • Soon Will Come the Light: A View from Inside the Autism Puzzle

  • Meyer, Donald J. (Ed.)

    • Views from Our Shoes: Growing up with a Brother or Sister with Special Needs

  • Myles, Bernard

    • Asperger Syndrome and Difficult Moments

  • Myles, Brenda S.

    • An Introduction to Applied Behavior Analysis

  • Park, Clara

    • The Siege

  • Powers, Michael D. (Ed.)

    • Children with Autism: A Parents Guide

  • Quill, Kathleen A.

    • Teaching Children with Autism

  • Richard, Gail J.

    • The Source for Autism

  • Rimland, Bernard

    • Infantile Autism

  • Ross, Bette M.

    • Our Special Child

  • Russell, L. Mark

    • Planning for the Future: Providing a Meaningful Life for the Handicap

  • Sacks, Oliver

    • An Anthropologist on Mars

  • Schnurr, Rosina

    • Asperger's Huh? A Child's Perspective

  • Scholper, E., Mesibov, G. & Kunce, L. (Eds.)

    • Aspergers Syndrome or High Functioning Autism

  • Schulze, Craig

    • When Snow Turns to Rain

  • Shapiro, Joe

    • No Pity

  • Siegel, Bryna

    • The World of the Autistic Child

  • Sperry, Virginia W.

    • Fragile Success

  • Stechli, Annabelle

    • The Sound of a Miracle

    • Sound of a Miracle

  • Sullivan, Connor & Sullivan, Danielle (Eds.)

    • I Love my Little Brother!: A Preschoolers View of Living with a brother who has Autism

  • Thompson, Sue

    • The Source for Nonverbal Learning Disorders

  • Wheeler, Bonnie

    • Challenged Parenting

  • Willey, Laine H. Pretending to be Normal

  • Williams, Donna

    • After the Tears

    • Autism- An Inside-Out Approach

    • Nobody, Nowhere

    • Somebody, Somewhere

    • The Unlost Instinct

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Internet Sites

Videos

Thank You to all the families who participate in this research and contributed to this booklet.

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