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Childhood Disintegrative Disorder


Disease: Childhood Disintegrative Disorder Childhood Disintegrative Disorder
Category: Psychiatric diseases
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Disease Definition:

The condition in which children develop normally until age 3 or 4, and then demonstrate a severe loss of social, communication and other skills, is referred to as childhood disintegrative disorder or Heller's syndrome.

Sometimes, this disorder is confused with late-onset autism. This is because normal development followed by significant loss of language, play, social and motor skills, is involved in both conditions. Among several disorders known as pervasive developmental disorders or autism spectrum disorders, there are autism and childhood disintegrative disorder.

Childhood disintegrative disorder is far less common than autism, which usually occurs at an earlier age than childhood disintegrative disorder. With childhood disintegrative disorder, there is a more dramatic loss of skills and a greater likelihood of mental retardation as well.

A combination of behavior therapy, medications and other approaches are involved in the treatment of childhood disintegrative disorder.

Work Group:

Prepared by: Scientific Section

Symptoms, Causes


The following signs and symptoms are usually noticed in children with childhood disintegrative disorder:

Including normal development of social relationships, appropriate nonverbal and verbal communication, and play, self-care and motor skills.

The loss occurs in at least two of the following areas before the age of 10:

  • Bowel and bladder control
  • Ability to say words or sentences (expressive language)
  • Motor skills (ability to voluntarily move the body in a purposeful way)
  • Play skills
  • Ability to understand verbal and nonverbal communication (receptive language)
  • Social skills and self-care skills (adaptive behavior)

This lack or impairment occurs in at least two of the following areas:

Repetitive and stereotyped patterns of behavior, interests and activities:
Difficulty with transitions or changes in routine; preoccupation with certain objects or activities; development of specific routines and rituals, maintaining a fixed posture of body position (catatonia); and hand ricking, flapping, spinning (motor stereotypes and mannerisms); are all included in this.

Social interaction:
Failure to develop peer relationships, impairment in nonverbal behaviors, lack of emotional or social reciprocity that is an inability to recognize, share, understand and respond to feelings of others or to social cues and interactions, are all included in this.  

Delay or lack of spoken language, repetitive and stereotyped use of language, inability to initiate or sustain a conversation, and lack of varied imaginative or make-believe play are all included in this.

Over the course of days to weeks or gradually over an extended period of time, loss of developmental milestones may occur.

Parents should talk to the doctor when suspecting that their child is showing a gradual loss in any area of development, or when noticing that this child has suddenly lost motor, play, social, thinking (cognitive) or self-help skills, such as feeding and toilet training, or previously acquired language. Though children usually develop at their own pace, but any loss of developmental milestones in children is cause for concern.


Childhood disintegrative disorder has no clear cause. There is likely a genetic basis for autism spectrum disorders, a theory upon which most experts agree. This theory is that in the early stages of development, before birth, an abnormal gene is switched on, and that this gene affects other genes that coordinate the child's brain development. These effects can be caused by environmental exposures, such as to a toxin or an infection.

The body’s immune system perceives normal body components as foreign and attacks them in an autoimmune response, which may play a role in the development of childhood disintegrative disorder as well. An underlying neurological or medical cause is uncovered in some rare cases by comprehensive neurological and medical examinations in children diagnosed with childhood disintegrative disorder. Whether or not epilepsy plays a role in causing the disorder is not clear, although the occurrence of epilepsy is higher in children with childhood disintegrative disorder.

The following have been associated with childhood disintegrative disorder:

Subacute sclerosing panencephalitis:
A form of the measles virus is the cause of this chronic infection of the brain, which results in brain inflammation and death of nerve cells.

Tuberous sclerosis:
Noncancerous (benign) tumors grow in the brain in this condition.

Lipid storage diseases:
A toxic buildup of excess fats (lipids) occurs in the brain and nervous system in this rare group of inherited metabolic disorders.

More studies are needed to investigate the causes of childhood disintegrative disorder, but due to the limited number of children diagnosed with the disorder, this will be quite difficult.





The same treatment for the autism is applied for childhood disintegrative disorder, as there is no cure for this disorder. The following may be included in the options of treatment:

Behavior therapy:
Speech therapists, occupational therapists, psychologists and physical therapists as well as teachers, caregivers and parents, can use this therapy technique. Behavior therapy programs may be designed to help the child learn or relearn social, self-care and language skills. To reinforce desirable behaviors and discourage problem behavior, these programs use a system of rewards. In behavior therapy, it is very important to use a consistent approach among caregivers, teachers and all health care team members.

Medications for anxiety or depression or even antipsychotic medications may sometimes control severe behavior problems such as repetitive movements and aggression, even though there are no medications that directly treat childhood disintegrative disorder. Epileptic seizures may be controlled with the help of anticonvulsant drugs.  

Children with childhood disintegrative disorder may eventually need residential care in a group home or long term care facility because the loss of social, cognitive, self-care and language skills tends to be severe and permanently disabling. So the outcome for children with the disorder is very poor, usually worse than for children with autism.


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