Childhood Disintegrative Disorder [CDD]

What is CDD?

Very few children who have an autism spectrum disorder (ASD) diagnosis meet the criteria for childhood disintegrative disorder (CDD). An estimate based on four surveys of ASD found fewer than two children per 100,000 with ASD could be classified as having CDD. This suggests that CDD is a very rare form of ASD. It has a strong male preponderance.** Symptoms may appear by age 2, but the average age of onset is between 3 and 4 years. Until this time, the child has age-appropriate skills in communication and social relationships. The long period of normal development before regression helps differentiate CDD from Rett syndrome.

The loss of such skills as vocabulary are more dramatic in CDD than they are in classical autism. The diagnosis requires extensive and pronounced losses involving motor, language, and social skills.*** CDD is also accompanied by loss of bowel and bladder control and oftentimes seizures and a very low IQ.

**Frombonne E. Prevalence of childhood disintegrative disorder. Autism, 2002; 6(2): 149-157.

***Volkmar RM and Rutter M. Childhood disintegrative disorder: Results of the DSM-IV autism field trial. Journal of the American Academy of Child and Adolescent Psychiatry, 1995; 34: 1092-1095. [More Information]

Common Characteristics of CDD

Both the DSM-IV and ICD-10 provide criteria for this condition. The criteria are rather similar in both, although some differences between the two systems are apparent (see recent publications). The condition develops in children who have previously seemed perfectly normal. Typically language, interest in the social environment, and often toileting and self-care abilities are lost, and there may be a general loss of interest in the environment. The child usually comes to look very 'autistic', i.e., the clinical presentation (but not the history) is then typical of a child with autism: [More Information]

Causes of CDD

The etiology is unknown but several lines of evidence suggest that it arises as a result of some form of central nervous system pathology. [More Information]

Diagnosis of CDD

Doctors should do a “developmental screening” at every well-baby and well-child visit, through the preschool years. In this screening, the doctor asks questions related to normal development that allow him or her to measure a specific child’s development. These questions are often more specific versions of the “red flags” listed above, such as Does the child cuddle like other children? Or, Does the child direct your attention by holding up objects for you to see? A doctor should definitely and immediately evaluate a child for autism if he or she:

Does not babble or coo by 12 months of age
Does not gesture (point, wave, grasp, etc.) by 12 months of age
Does not say single words by 16 months of age
Does not say two-word phrases on his or her own (rather than just repeating what someone says to him or her) by 24 months of age
Has any loss of any language or social skill at any age

If the doctor finds that a child either has definite signs of autism, or has a high number of red flags, he or she will send the child to a specialist in child development or another type of health care professional, so the child can be tested for autism. The specialist will rule out other disorders and use tests specific to autism. Then he or she will decide whether a formal diagnosis of autism, ASD, or another disorder is appropriate. [More Information]

Support Groups

The stress of illness can often be helped by joining a support group where members share common experiences and problems. [Find Local Chapters]