When Autism Strikes: Families Cope with Childhood Disintegrative Disorder

by Robert A. Catalano

Book Overview

To lose a child is tragic; to lose a child who still lives is beyond comprehension. Yet this is the experience of the mothers and fathers who tell their very personal stories in this important book.... This description may be from another edition of this product.

• Format: Paperback
• Language: English
• ISBN: 030645789X
• ISBN13: 9780306457890
• Release Date: January 1998
• Publisher: Springer
• Length: 248 Pages
• Weight: 0.90 lbs.
• Dimensions: 0.6" x 6.0" x 8.9"

Customer Reviews

Parents tell of Childhood Disintegrative Disorder

The disorder is defined and eight case studies as viewed by parents are described. In so doing, various educational and medical avenues and life-style options are identified as alternatives in the treatment. I consider that this book is a succinct, invaluable and wide source of information that might provide a critical role in assisting parents to cope with this devastating disorder. In addition, pediatricians are provided with an insight into the plight of the families of certain of their clientele.Congratulations to Robert Catalano on bringing together the stories from diverse families in three continents and five countries.

Heartwrenching

I have a son who has been diagnosed with Childhood Disintegrative Disorder And every thing that I read in this book is true.This is an awfull disorder and what makes it worse is the fact that nobody knows where it comes from and how to prevent it.Reading this book was good for me, it helped me to know that I am not alone.

A must read for parents seeking answers re child regression.

A diagnosis of Childhood Disintegrative Disorder (CDD) seems a pretty frightening thing and one that most of us would choose to run away from (as if we might have a choice!). Some- where along my own path for answers concerning my child's regression I can remember a well meaning speech therapist sharing with me the short criteria list for CDD from DMS-IV. I xeroxed it and carried it around for a couple of years glancing at the paper from time to time in order to reassure myself against that diagnosis. I've got to tell you that this book is a must read for many of us who are still searching for the true diagnosis for our kids. Yes, it's scary but it's also VERY enlightening. The preface by Dr. Catalano begins, "This book is not for the weak of heart." He's right and should you read it, you can expect to shed some tears... for the families profiled and for all families in search for answers when their children regress.The DMS-IV criteria for CDD specifies that the child develops typically to the age of 3; the condition's onset may be abrubt or more gradual; "sometimes there is a period of non-specific agitation as the child begins the dramatic regression that is the hallmark of this condition." Dr. Robert Catalano is an opthalmologist and a parent of a CDD child, while Dr. Volkmar of the forward is an authority in the autism/ CDD field. Dr. Volkmar explains that "for many years the presumption was that CDD was the overt manifestation of some identifiable neurological or other medical condition and, therefore, did not deserve official recognition." He adds, that "this has not been the case. Although such cases have been observed, it usually is the case that exhaustive medical evaluations do not reveal a specific medical 'cause' although non- specific abnormalities consistent with some as yet undiscovered neurobiological process or processes of seizures or abnormal brain wave activity are sometimes observed."I have been reading the book at every available moment including in the middle of the night (hard to put down)... it haunts me, but still I must read further. I am the parent of two severely language-disordered, autistic spectrum children. A little over a year ago, my girls were given a tentative diagnosis of Landau Kleffner Syndrome (LKS). Even prior to this diagnosis I had begun an on-line support group for LKS families. Notably, several of the families profiled in the Catalano book have been down the LKS pathway. We (those who stories are in print and countless others) hope for the potentially curable diagnosis of LKS over the seemingly hopeless one of CDD (formerly referred to as Heller's Syndrome or Disintegrative Psychosis). Catalano writes of the parents, "They press for one more test, one more chance to expose the cause. They also try one more procedure, one more drug, and one more placement in this quest." He/ they are writing our individual and collective stories.The book consists of eight chapters, each written by the pa

The book was fascinating.

This book was truly marvelous. I never knew this kind of disorder even existed until I saw this book and read it. My family is very fortunate not to have a child with CDD in it.I liked everything about it. I truly and sincerely hope that all the children in it will be cured somehow(hopefully there is research being done presently).

Honest, informative and moving

As far as I know, this is the only book specifically about the rare and mysterious pervasive developmental disorder known as Childhood Disintegrative Disorder (or Heller's Syndrome), in which children lose previously acquired skills and develop the symptoms of autism after several years of apparently normal development.With an introduction by autism expert Fred Volkmar, the book presents the stories of eight families of children with CDD, including the editor's own son Thomas, and Jordan Schulze (the subject of his father Craig's book "When Snow Turns to Rain"), as they struggle to cope with and find an explanation for their children's devastating regression.Hopefully, this book will increase awareness of the under-diagnosed condition and let other families know that they are not alone.