My Child Has... Article

My Child Has...

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Childhood Disintegrative Disorder


What is childhood disintegrative disorder?

Childhood disintegrative disorder (CDD) is a condition in which children who have developed normally to age 2 start to have problems. The child begins to lose intellectual, social, and language skills.

CDD is also known as Heller's syndrome. It is also called an autistic spectrum disorder because it is related to autism. Autism is a disorder in which children have language and social problems.

How does it occur?

CDD is a rare disorder. The cause is unknown. It may be linked with seizures and abnormal brain activity. Boys are more likely than girls to have CDD.

What are the symptoms?

At about age 3 or 4, the parents may notice that something is different about their child, for example:

  • loss of social skills, for example, avoiding eye contact and withdrawing
  • loss of bowel and bladder control
  • loss of the ability to understand what others are saying
  • loss of motor skills
  • lack of play
  • not being able to relate to other children
  • odd nonverbal behaviors, such as walking on tiptoe, flicking his fingers for long periods, or banging his head
  • delay or lack of ability to speak
  • not being able to start a conversation or keep one going

Once skills are lost, they are not usually regained.

How is it diagnosed?

Your child's healthcare provider will examine your child and ask about the child's symptoms, medical history, and the family history of any medical and mental problems. Sometimes a CT or MRI scan of the brain or an EEG to measure electrical activity of the brain will be done. A psychologist can test the child's intelligence and how well the child can interact and communicate. Your school district may also provide testing services for your child.

How is it treated?

There is no one best treatment for all children with CDD. Treatment focuses on educational and behavioral therapy.

Usually children are placed in public schools and the school district pays for all needed services. These will include working with a speech therapist, occupational therapist, school psychologist, social worker, school nurse, or aide. You may want to visit public schools in your area to see the type of program they offer to special needs children.

A team of professionals will help evaluate your child and put a plan together. You may also ask your healthcare provider to review the plan. Ask and find out all the services that may be available for your child.

Sometimes medicine can help. Medicine can improve behaviors that may cause self-injury or interfere with school or social ability. These medicines must be prescribed by a healthcare provider experienced with their use in children with CDD.

Where can my family get help and support?

When parents hear that their child has CDD, they may feel emotions such as fear, anger, and guilt. Many families find that seeing a mental health professional helps them to cope.

Having a child with CDD can be stressful for the whole family. It can affect recreation and family finances. It can also strain your marriage and relationships between siblings.

Support groups can help by sharing common concerns and solutions to problems with other families in the same situation. You can find these services through your healthcare provider, schools, therapy programs, and local and national support organizations.


Developed by RelayHealth.
Published by RelayHealth.
Last modified: 2010-12-06
Last reviewed: 2010-12-02

This content is reviewed periodically and is subject to change as new health information becomes available. The information is intended to inform and educate and is not a replacement for medical evaluation, advice, diagnosis or treatment by a health care professional.

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