When Autism Strikes : Families Cope with Childhood Disintegrative Disorder

We dedicate this book in loving memory of Daniel George Kalmer, and to al1 children with disabilities and their families. May they find the happiness they deserve. ## FOREWORD xi manifestation of same identifiable neurologicalor other medical condition and, therefore, did not deserve official recognition. Again this has turned out not to be 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 nonspecific abnormalities consistent with some as yet undiscovered neurobiological process or processes of seizures or abnormal brain wave activity are sometimes observed. The lack of recognition of the condition has limited research, and only now are systematic studies being conducted. Studies of epidemiology, Intervention, and, of course, neurobiology are very much needed. When Autism Strikes: Families Cope with Childhood Disintegrative Disorder will increase awareness of this perplexing condition and, as such, can only facilitate efforts to find its causes. This volume is a poignant testament to the enormous toll that this condition takes on afflicted children and their families. Their tremendous suffering is intensified by their experience of the children's earlier normal development, often documented in videotapes recorded prior to the regression. I applaud the courage of the families who , in this volurne , eloquently provide their own accounts of coping with the human tragedy that this condition represents.

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. Their children, born healthy and happy, lost their minds to a mysterious disorder with no known cause or cure: Childhood Disintegrative Disorder (CDD). Also called late-onset autism, this malady differs from typical autism in that it afflicts children after one to three years of apparently normal development, and long-term deterioration may lead to even poorer behavioral and developmental functioning. How do families respond to such ever-present loss? In When Autism Strikes, the parents of eight such children from around the world present their own stories, in their own words. They describe their first suspicions, their struggles to find a cause, and the means by which they cope, day to day. Heartbreaking yet inspiring, this courageous document brings to light a scientific mystery and a human tragedy.

...contains eight personal stories from parents of children living with childhood disintegrative disorder (CDD), also known as late-onset autism...provides emotional insight as well as knowledge about CDD's symptoms & effects.

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. Their children, born healthy and happy, lost their minds to a mysterious disorder with no known cause or cure: Childhood Disintegrative Disorder (CDD). Also called late-onset autism, this malady differs from typical autism in that it afflicts children after one or even two years of apparently normal development. In the long term, deterioration leads to still poorer behavioral and developmental functioning.How do families respond to such ever-present loss? In When Autism Strikes, the parents of eight such children from around the world present their own stories, in their own words. They describe their first suspicions, their struggles to find a cause, and the means by which they cope, day to day. By turns heartbreaking and inspiring, this courageous document brings to light a scientific mystery and a human tragedy. This book examines childhood disintegrative disorder, which is seen to be a disorder apart from autism although it has sometimes been called "late onset autism". The condition is characterized by sudden onset and severe developmental regression between 3 and 5 years of age after previously normal development. The long-term outcome is usually substantially worse than in autism. No neurological or other medical condition causing the disorder has been identified. The book presents case histories through stories of individual children and their families. Chapters are: (1) "Per's Pages (Kjell Berg); (2) "Pickle" (Sheila Brown); (3) "Searching for the Blue Fairy: Thomas's Tale" (Madeline Catalano); (4) "Coming Home" (Marie Day); (5) "Diary of David" (Jenny Fairthorne); (6) "Laura's Story" (Sue and Stephen Ferris); (7) "Looking for Answers: Chronicles of an Autistic Child" (Candice Goldstein); and (8) "The River Jordan" (Craig Schulze). (DB) Front Matter....Pages i-xiv Per’s Pages....Pages 1-11 Pickle....Pages 13-33 Searching for the Blue Fairy....Pages 35-68 Coming Home....Pages 69-90 Diary of David....Pages 91-160 Laura’s Story....Pages 161-190 Looking for Answers....Pages 191-220 The River Jordan....Pages 221-236 Back Matter....Pages 237-248