What to know about childhood disintegrative disorder

Share on Pinterest

CDD is a rare disorder, affecting around 1–2 in 100,000 children.

According to an earlier version of the DSM-5-TR, children with CDD have typical age-appropriate development until at least age 2 in verbal and nonverbal communication, social relationships, play, and adaptive behavior. Between the ages of 2 and 10 years, they experience a significant loss of previously acquired skills in two or more of the following areas:

• expressive and receptive language
• social skills
• adaptive behavior
• play
• motor skills
• bladder or bowel control

CDD symptoms typically start between ages 3 and 4 and can be gradual or abrupt.

Children with CDD experience difficulties in social communication and the restricted, repetitive behaviors characteristic of ASD.

Although the DSM-5-TR acknowledges that CDD is an ASD, it does not include regression as part of the criteria for an ASD diagnosis. However, the eleventh revision of the International Classification of Diseases includes “loss of previously acquired skills” under its specifiers for characterizing features within the autism spectrum.

Symptoms of CDD may include:

• age-typical development until at least age 2
• the loss of previously acquired skills before age 10 in two or more of the following areas:
  • expressive or receptive language
  • social skills or adaptive behavior
  • bladder or bowel control
  • play
  • motor skills
• impaired functioning in two or more of the following areas:
  • social interaction, such as impaired nonverbal behaviors, difficulties making and sustaining friendships, lack of social or emotional reciprocity
  • communication, such as delayed or minimal speech, difficulty starting or maintaining conversations, repetitive use of language, a lack of make-believe play
  • restricted, repetitive behavior, such as intense fascination with specific interests or activities and rocking forward and backward

Medical professionals do not know what causes CDD or ASD. Experts suggest that genetic and environmental factors may contribute to their development.

Research indicates an association between CDD and the following diseases, particularly when CDD symptoms start later in childhood:

• Subacute sclerosing panencephalitis: This is a progressive neurological disorder affecting the central nervous system, which consists of the brain and spinal cord. A viral infection relating to the measles virus causes it.
• Tuberous sclerosis complex: This rare genetic disorder causes noncancerous tumors to grow in the brain. They may also grow in other areas, such as the spinal cord, nerves, eyes, and other organs.
• Leukodystrophy: This genetic disease involves atypical myelin sheath development that causes white matter in the brain to disintegrate. White matter is a type of brain tissue that connects different parts of the brain.
• Lipid storage diseases: This group of inherited metabolic disorders causes harmful amounts of fatty materials known as lipids to accumulate in cells and tissues.

Some factors linked with an increased risk of developing ASD may include:

• having siblings with ASD
• being born to older parents
• experiencing complications at birth
• having particular genetic or chromosomal conditions, such as Down syndrome or Fragile X syndrome

CDD treatment is similar to treating and managing ASD. Healthcare professionals tailor therapies to individuals’ disabilities, needs, and educational requirements.

Treatment may involve:

• Family counseling and education: These can help parents and caregivers follow a child’s treatment plan at home.
• Developmental approaches: Healthcare professionals may use a combination of speech, language, social skills development, occupational, physical, and sensory therapies depending on the child’s needs.
• Behavioral therapy: This treatment program can help individuals relearn self-care, language, and social skills using reward systems to reinforce desired behaviors and prevent undesired behaviors.
• Medications: No medications treat the core symptoms of CDD and ASD, but some medications may help people with other co-occurring conditions. For example, antidepressants and antianxiety medications may help reduce symptoms of depression and anxiety.
• Cognitive behavioral therapy: This psychological approach can help people with CDD and ASD cope with anxiety, depression, and other mental health conditions.

Following a loss of skills in childhood, a child’s previously acquired skills do not typically return to typical levels. Only around 20% of children with CDD can speak in sentences again, while very few may experience a slight improvement.

CDD is a lifelong disorder with significant impairments in intellectual functioning, independence, and ability to adjust, causing severe mental disability. Many adults with the condition remain dependent on full-time caregivers.

Parents and caregivers need to contact a doctor if their child has symptoms of CDD or ASD. A doctor can take a medical history and evaluate a child’s behavior and development.

It is important to attend all routine well-checks so that a child’s doctor can monitor their growth and development.

If a doctor suspects a child has ASD, they will likely work with a team of healthcare professionals to make an accurate diagnosis. The healthcare team may include:

• child neurologists
• developmental pediatricians
• speech-language pathologists
• child psychologists and psychiatrists
• educational specialists
• occupational therapists

CDD is a rare disorder where children have apparent typical development until at least age 2 and then gradually or abruptly experience regression in social, language, and motor functioning skills.

Children with CDD may have impaired social functioning and social interactions and have restricted, repetitive patterns of behavior, interests, and activities.

Treatments for CDD are similar to ASD and involve a combination of therapies and management strategies.