Childhood Disintegrative Disorder: Causes, Symptoms, and Treatment
Medically reviewed by Sumiran Racherla, MD, Internal Medicine. Last reviewed: October 23, 2026.
What kind of doctor treats Childhood Disintegrative Disorder?
A psychiatrist (a doctor who treats mental health and behavior conditions) usually makes the diagnosis, often after a pediatrician (a children's doctor) first checks the child. A neurologist (a brain and nerve doctor) may also help. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What is childhood disintegrative disorder?
Childhood disintegrative disorder (CDD) is a rare condition. Children develop normally at first, usually through about age 3. Then, over a few months, they lose skills they already learned. These include language, movement, and social skills.
CDD is also called Heller's syndrome and disintegrative psychosis. It is part of the larger group of conditions called autism spectrum disorder. Autism spectrum disorder is defined by problems with social communication and by repeated patterns of behavior.
Signs of other types of autism are usually noticed by age 2. In CDD, the loss of skills usually starts between ages 3 and 4.
Symptoms
Children with CDD have at least 2 years of normal development. After that, they begin to lose skills they had learned. The loss usually happens in more than two areas. Signs can include:
- Loss of the ability to understand language.
- Loss of spoken language.
- Loss of social skills and of play with other children.
- Loss of motor skills, which are skills for moving the body.
- Loss of bowel or bladder control that the child had already learned.
- Repeated movements, such as bobbing the head up and down.
Most children with CDD first have bouts of anxiety and terror. This happens before they lose skills. Seizures also sometimes occur with CDD.
Causes and who gets it
The cause of CDD is unknown. Research suggests the problem may start in the biology of the brain. About half of children with CDD have an abnormal EEG. An EEG is a test that records the electrical activity of the brain, also called brain waves.
In one small study, researchers looked at the genes of children with CDD. They found no gene that clearly causes it. No consistent medical, environmental, or psychosocial trigger has been linked to CDD. A psychosocial trigger is a social or emotional event.
CDD is more common in boys than in girls.
How doctors diagnose it
Parents often start by asking a pediatrician about a child's loss of skills. The doctor first does a medical exam to rule out a physical cause. The child is then referred to a psychiatrist, who decides whether it is CDD.
To be diagnosed, a child must have apparently normal development for at least the first 2 years. The child must also lose skills in at least two areas, such as language, social skills, play, movement, or bowel and bladder control. These changes must not be caused by a general medical condition or another diagnosed mental disorder.
In the newest edition of the manual doctors use for diagnosis (the DSM-5), CDD is no longer a separate diagnosis. It is now included under autism spectrum disorder.
Treatment
Treatment for CDD is very similar to treatment for autism. The focus is on early and intense educational help. Most treatment is behavior-based and highly structured.
Care may include speech and language therapy (help with talking and understanding), occupational therapy (help with daily skills), social skills training, and sensory integration therapy. The mix depends on the needs of the child.
No medicine is known to target the core symptoms of this group of conditions. Some medicines may help with behavior problems, such as aggression. Ask the child's doctor about the benefits and side effects of any medicine.
When to see a doctor
Talk with a pediatrician if a child loses skills that he or she had already learned. Seizures sometimes occur with CDD. Call 911 or go to the emergency room if a child has a seizure. If you are thinking about harming yourself, call or text 988 (the Suicide and Crisis Lifeline) right away.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. Either kind of doctor can listen to your concerns, do a first exam, and help arrange a visit with a child psychiatrist or another specialist. They can also help coordinate follow-up care.
Common questions
Is childhood disintegrative disorder the same as autism?
CDD is a type of autism spectrum disorder, but it usually starts later than other types. A child develops normally for at least 2 years and then loses skills. Signs of other types of autism are usually noticed by age 2.
What causes childhood disintegrative disorder?
Doctors do not know the cause. Research suggests it may start in the biology of the brain. No consistent medical, environmental, or psychosocial trigger has been linked to it.
At what age does childhood disintegrative disorder start?
The loss of skills usually starts between ages 3 and 4. It can happen any time up to age 10. Before that, children have at least 2 years of normal development.
Does childhood disintegrative disorder affect boys more than girls?
Yes, studies estimate that more boys than girls are affected.
What is the outlook for a child with childhood disintegrative disorder?
Children with CDD generally have the poorest outcome among people with autism spectrum disorder. They usually have a severe loss of thinking and communication skills. Early, structured help is the main focus of care.
Sources
- MedlinePlus - Autism spectrum disorder - childhood disintegrative disorder
- National Library of Medicine (PubMed Central) - Childhood disintegrative disorder
- National Library of Medicine (PubMed Central) - Neurogenetic analysis of childhood disintegrative disorder
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
