Theodore Heller first proposed the term dementia infantilis ninety years previous to a publication in 2004 and after his study of six children with this condition (13:221-226). Childhood disintegrative disorder, also known as Heller's disorder, is usually recognized within the first years of life. This disorder was described before autism, but has just recently been officially recognized (“Childhood Disintegrative Disorder“).
A person with this condition is generally associated with mental retardation, among other medical problems (Patton, Blackburn, Fad 116). “This very rare disorder is distinguished from autistic disorder by a regression in functioning after at least 2 years of apparently normal development, but before age 10 and show a loss of skills in at least two major domains including language, social skills, bowel or bladder control, play, or motor skills.”(28:8) The child then goes into an autistic state (13:221-226).
“About twenty to forty percent of autism patients show regression as represented by speech loss in infancy and, after such regression, autism patients with speech loss exhibit significantly poorer mental development (at mean age five); a significantly higher rate of epilepsy (by mean age five and twenty-two); and significantly less satisfactory communication skills (at mean ages five and twenty- two, and between ages nine and twenty six) than those without speech loss.”(13:221-226).
Childhood disintegrative disorder is categorized under the “Autism Spectrum Disorders Umbrella”. CDD as well as Autism, Asperger syndrome Rett syndrome , and pervasive development disorder all show signs that the person has autistic tendencies. “These conditions share similar behavioral characteristics in the areas of social interaction, verbal or nonverbal communication, and repetitive behaviors or interest” (Smith, 432).
Unfortunately, the cause of childhood disintegrative disorder is not known. However, it is believed that “it arises as a result of some form of central nervous system pathology”(“Childhood Disintegrative Disorder”). Research has shown that this disorder is predominant in males and is ten times less common than “autism”(“Childhood Disintegrative Disorder”).
As similar as autism and childhood disintegrative disorder are, the prognosis for CDD is actually worse. People with CDD tend to have lower IQ's, muteness, and a greater likelihood of residential placement because they are not able to take care of themselves (25:308). Also, unlike autism, people with childhood disintegrative disorder continue to regress (Smith, 437).
One major difference between CDD and autism is that some children show signs of the disorder at birth. The most common is the lack of communication and social skills. Whereas with childhood disintegrative disorder, the child develops “normally” until about the age of five and six (Smith, 433, 437). However, different resources differ in the expected regression age.
Childhood disintegrative disorder is a very unusual condition that is very rare. Most parents when they hold their newborn baby for the first time and count their ten fingers and toes, do not wonder whether or not their child has CDD. Because this disorder is so uncommon, for years children have been misdiagnosed with autism when they had childhood disintegrative disorder. Had it not been for Theodore Heller over ninety years ago and his study of six children, this disorder may have never been brought to light.
There are no cures, not treatments, and not much known about the disorder which means there is not much that doctors can tell the parents of these children. What the parents hear is that their child's CDD will regress even further and the child could never live a “normal” life. This diagnosis is heartbreaking for a parent. Hopefully, one day, more will be discovered about childhood disintegrative disorder, at least enough to know exactly what it is caused by and if there are any treatments.
Works Cited
- “Childhood Disintegrative Disorder”. Yale Developmental Disabilities Clinic: . 2 Oct. 2006 www.med.edu
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- Harris, Sandra L. and Beth Glasberg. “Pervasive developmental disorders: Distinguishing among subtypes”. School Psychology Review: .1996. Vol. 25 Issue 3. Galileo
- Kurita, Hiroshi , Tomonori Koyama, Yutaro Setoya, Kaoru Shimizu, and Hirokaszu Osada. “Validity of Childhood Disintegrative Disorder Aparet From Autistic Disorder with Speech Loss”. European Child & Adolescent Psychiatry: . 2004. 13:221-226. Galileo
- Patton, James, Joseph M. Blackbourn, and Kathleen S. Fad. Exceptional Individuals in Focus: . New Jersey: Prentice-Hall, 1996.
- Smith, Deborah Deutsch. Introduction to Special Education: Making a Difference: 6 th Edition. Boston: Pearson Education Inc., 2007.
- “A collection of behavioral characteristics that are associated with problems developing adequate social skills and with restricted or unusual interests” (Smith, 435).
- “A genetically based condition. Appears only in girls. Behaviorally, it is characterized by a progressive expression of repeated, stereotypic hand wringing; lack of muscle control; and communication and social deficits” (Smith, 436).
- “When children do not display problems in all three areas (communication, social skills, and unusual behaviors) or when problems in all three areas are mild” (Smith, 437).
