Additional Resources

We are always updating.  Here are some extra resources and perspectives for you divided into three sections: Families Speak, Professionals Write, and Books.

Families Speak:

Georgia’s Separate and Unequal Special Education System: a statewide network of schools for disabled student has trapped black children in neglect and isolation.   Rachel Aviv, New Yorker Magazine, Oct 2018.

Abused and Betrayed NPR Report 2018  (compromising care of persons with IDD)

One Year Down This Path: A Father Speaks  (This dad has a daughter with Down syndrome. He cites well reviewed research on quality of life.)

Ask An Autistic  (Amethyst Schaber has created a website called Neurowonderful.  Please see her short teaching videos which include lucid explanations of terms and personal experience from Amethyst who has a diagnosis of ASD.  Scroll down for the full range of her contribution.)

The Story of Not Quite (a parent speaks about hard to see ASD)

How Early Can Autism be Diagnosed? (Lauren Elder PhD Autism Speaks)

A Father’s Mission To Help His Son With Autism


Professionals Write:

2011 Freedman et al: Parental Relationship Status and ASD

Siblings of Kids with Special Needs  U Michigan Medical School Resource


Book List:

A list of examples useful to both families and professionals separated into three sections:  Autism, Down Syndrome and General.


Asperger’s Syndrome:  A Guide for Parents and Professionals.  Tony Attwood. 1998.

Early Intervention and Autism:  Real-Life Questions, Real-Life Answers.  James Ball.  2008.

The Ride Together: A Brother and Sister’s Memoir of Autism in the Family.  Paul Karasik and Judy Karasik.  2003.  Paul writes his chapters in graphic novel form. Judy writes in prose.  It won Best Literary Work of the Year from the Autism Society of America.

An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn.   Sally J. Rogers, Geraldine Dawson, and Laurie A. Vismara.  2012.

Understanding Children and Families with Autism Spectrum Disorder.  Renee Silverberg.  2014.

Down Syndrome:

The Guide to Good Health for Teens & Adults with Down Syndrome.  Brian Chicoine, M.D. & Dennis McGuire, Ph.D. 2010.

When Down Syndrome and Autism Intersect:  A Guide to DS-ASD for Parents and Professionals.  Margaret Froehlke, RN & Robin Zaborek.  2013.

The Parent’s Guide to Down Syndrome:  Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood.  Jennifer Jacob and Mardra Sikora.  2016.

Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges.   Dennis McGuire, Ph.D. & Brian Chicoine, MD.  2006.

Fasten Your Seat Belt: A Crash Course on Down Syndrome for Brothers and Sisters.  Bryan Skotko M.D. & Karen Levine, PhD. 2009.


Moving Out: A Family Guide to Residential Planning for Adults with Disabilities.  Dafna Krouk-Gordon & Barbara D. Jackins.  2013.

Uncommon Fathers.  Reflections on Raising a Child with a Disability.  Edited by Donald J. Meyer.  1995.  Essays written by fathers.

The Sibling Survival Guide:  Indispensable Information for Brothers and Sisters of Adults with Disabilities.  Edited by Don Meyer and Emily Holl.  2014

Nobody’s Perfect: Living & Growing with Children Who Have Special Needs.  Nancy B. Miller, Ph.D., M.S.W.  1994.

Ordinary Families, Special Children.  3rd edition.  A Systems Approach to Childhood Disability.  Milton Seligman and Rosalyn Benjamin Darling.  2007