When Autism Strikes: Families Cope With Childhood Disintegrative Disorder

Rating:
Summary: A must read for parents seeking answers re child regression.
Review: 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 parent of an autistic/ CDD child. Reading these chapters is like peering into the hearts of those parents. Except for the child in the final chapter, the children profiled are in the 5 - 10 age range, and given that this book is newly issued, these children's stories truly do parallel the stories of the 70 or so families in my on-line group. One wonders how many other such families exist... how many children's lives are marked by the fact of regression and a kind of slipping into autism? These kids were born in the late 80's and early 90's, and many of the doctors and other professionals are recognizable names to many of our families. These families have followed many of the same paths as we have... it truly is eerie to read.

Each story has tough moments, and yet, somehow the book remains hopeful. I suppose that there is some comfort for me in knowing that other parents who have tried with great diligence to find answers and the elusive path to recovery, have met similarly with frustration, incomprehention from professionals and the greater community, incomplete and inadequate answers, and instead of recovery have found a kind of resting place. Another reason that I can recommend this book to fellow parents of children "in the grey zone of an LKS diagnosis" like my own, is that they have put together in print a compilation of almost every conceivable path that parents might follow. It becomes a compendium of our search.

The book profiles the families' pursuit of various medications including anticonvulsants, antipyschotic drugs, steroids and IVIG. These families have spent countless hours in sensory integration therapy, speech therapy and Lovaas. One family combined Lovaas methods with Greenspan's naturalistic approach to communication. Alternative approaches are enumerated along with elimination diets and vitamin therapy. Virtually every method (sorry, no magnetic therapy!) is touched upon. For the most part, medical interventions did not lead to a lasting normalization for these kids. An aside, many of the stories include very convincing evidence of a connection between vaccination and subsequent regression.

A hopeful note for me was reading multiple accounts of a kind of stabilization in these children. One child undoubtedly benefited from taking the anti-psychotic, Largactil. Risperidol, by contrast, resulted in a loss of skills and increased agitation. His mother writes, "It was a blessing that the first anti-psychotic that Aaron was placed on had a positive effect. If he was tried on 3 or 4 different drugs with the same result as he had with Risperidol, I would have given up." Surprisingly, this same mother didn't benefit from her own wisdom when she tried an anticonvulsant. Aaron was started on a trial of Tegretol which made him quite ill within the first few days of treatment. His mother writes, "Aaron's allergic reaction to Tegretol finally made me (confront) my constant search for another (other than CDD) diagnosis. For whose benefit was I putting him through extra tests and sickness?" Her own response; "I am confident that I did it for Aaron.... (but I realized), it was time to stop." Each of us are confronted by this dilemna... when do we push for another path, another diagnosis, another cure and when do we accept and move towards a kind of stopping place?

Ultimately I'm recommending this book for the familiarity it brings... a kind of validation for all of our efforts no matter the outcome. The consolation for me was two fold. Firstly, CDD doesn't mean an endless collapse.... the disintegration appears to end for most of the kids profiled. In fact, most seemed to have some nominal recovery to a place where they were able to function within their environment. Parent, Craig Schultze, summarizes the second reason for my consolation. He writes, "The diagnosis of CDD is just the beginning of a process that will subdivide the fundtionally useless label of autism into subgroups that can be better studied to find causes, preventive strategies, and cures."

Rating:
Summary: Honest, informative and moving
Review: 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.

Rating:
Summary: The book was fascinating.
Review: As I have an autistic nephew, I can sympathize with these families. Although he has a different type of autism, I am interested in every type.

I found in this book similarities between these children and my nephew. It was a fascinating book, and it held my attention throughout. Anyone will probably enjoy it, especially people who can relate to these stories or people who are interested in childrens' disorders.

Rating:
Summary: This book kept me on the edge of my seat.
Review: This book was very interesting, and it kept me on the edge of my seat. I wanted to yell out to these families that it would be okay, we would get through this. Obviously, I could not do that. However, I am giving this book 5 stars, and I am saying this to all of them: Keep calm, one day someone will find a cure. That's how this world works. I recommend this book to anyone interested in learning about children with mental handicaps. It is one of the best I have read.

Rating:
Summary: very good
Review: this is a great book.i have red it a few times. it is hard to find info on this disodre since it is rare. however this book helped me alot.