Newsline Volume 33, Number 2

Book Review

Reviewed by by Dorothy Robison

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

By Margaret Froehlke, R. N. & Robin Zaborek, Woodbine House, 218 pp.

When Down Syndrome and Autism Intersect: A Guide to DS-ASD for Parents and ProfessionalsThis guide book provides an important starting point and a continuing reference guide for parents of children who have both Down syndrome and a diagnosis on the autism spectrum. The book begins with the experiences and perspectives of two parents who tell their stories with warmth and compassion. Both acknowledge the double grief of first adjusting to the life differences that having Down syndrome is likely to bring to their child and to their family and then to the additional pain of understanding why their son or daughter is so unlike other children with Down syndrome.

They openly discuss the isolation they felt at events where other children with Down syndrome were playing, socializing, and talking while their child sat on the sidelines, seemingly uninterested, or more interested in staring at the light through the window than in interacting with others. The parents in the book acknowledge that for some parents the second diagnosis of an ASD (autism spectrum disorder) is a relief; that they finally have a word for why their child is different from others with DS (Down syndrome). For others, the second diagnosis brings new pain and an overwhelming idea that now they must learn all there is to know not only about Down syndrome, but about autism as well.

I found myself asking at the end of the book, "This book has been great about taking the person apart into different parts - important parts including medical needs, behavioral needs, etc. Why not put the whole person back together again at the end and let parents know how truly cool their child with DS-ASD is?" No matter how many diagnoses a child has, he or she is still a whole person to be valued and loved for who they are. One cannot deny the stress on parents who live with the accommodations they must make in their lives day in and day out for their son or daughter. The stress might be eased just a bit by acknowledging the pride and the wonder in who their son or daughter turns out to be: perhaps funny, maybe a little quirky, no doubt interesting, with skills and interests where a parent might never have expected them.

Overall, the book provides very helpful information on every topic from possible problem behaviors to health care to designing educational programs. The checklists and notations of what to look for at various ages is very helpful in making this guidebook one to which parents will refer as their child goes all the way through school. I do wish the book had done more to encourage parents to be prepared to be positively surprised..

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