What is childhood disintegrative disorder (CDD)? Is my child at risk? How might it affect my child? These are questions parents of children on the spectrum might ask when first seeing CDD written out in front of them, perhaps alongside the word “autism”.
Being a parent and watching your children develop, wondering whether they are reaching their milestones, can be stressful. It is natural to worry if your child has previously met some developmental milestones and they appear to start regressing.
If regression of previously acquired skills occurs at any time, it is always a good idea to talk to your child’s doctor. They can do an exam and order additional assessments and tests, if necessary. Try not to panic, a skills regression can happen for many reasons and is not always a sign of CDD.
In this article we will be discussing CDD, what it is, diagnosis, and how CDD differs from autism spectrum disorders (ASD). At first glance, both CDD and ASD seem to have a lot of similarities, but they also have many notable differences.
What is childhood disintegrative disorder?
Childhood disintegrative disorder (CDD) is a rare condition characterized by the occurrence of developmental delays after a child is two or three years old. These developmental delays are found in language skills, social skills, and/or gross and fine motor skills.
The other two names that CDD is known by are Heller’s syndrome and disintegrative psychosis. The condition was first reported and described in 1908 by Austrian educator Thomas Heller.
The disorder is sometimes grouped with other, better understood, conditions like pervasive developmental disorders (PDD) or autism spectrum disorders. However, most children with PDD or autism will not also experience CDD. CDD affects many different areas of a child’s development and that is the main reason it can sometimes be found with these other conditions.
Childhood disintegrative disorder is thought to affect 1 in 100,000 boys. The typical ratio of boys to girls is estimated at about eight boys affected to one girl. Regression usually starts around two to three years old but can continue up to around age 10.
Autism is much more common than CDD and is believed to affect 1 in 44 eight year olds, according to the Centers for Disease Control (CDC).
What are the symptoms of childhood disintegrative disorder?
When a parent starts noticing their child has late onset regression and starts losing developmental milestones and skills they previously had, it is probably a good time to discuss the possibility of CDD with a doctor.
The child’s doctor can check and rule out any other possibilities during a routine exam. If the doctor is concerned, they might refer the child to a psychiatrist who will conduct further assessments and make the diagnosis of CDD, if applicable.
In order to diagnose CDD, the child must show regression in at least two of the areas listed below after they turn two years old:
- understanding language that is spoken to them (receptive language skills)
- being able to express thoughts through language (expressive language skills)
- social skills and/or ability to regulate behavior (adaptive behaviors)
- interactions with others their age/peers
- development of fine and gross motor skills
- toilet training or loss of previous bowel or bladder control
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Along with the regressions noted above, the child should also exhibit anomalous function in at least two of the following areas:
- difficulty interacting with and making social and emotional connections through nonverbal behaviors
- difficulty with social skills and situations like starting and maintaining conversations with others
- repetitive stereotypical patterns and behaviors, like hand flapping and other types of repetitive movements. These are typically not caused by general medical conditions and/or other diagnosed medical conditions
What causes childhood disintegrative disorder?
There is no definitive research that pinpoints the cause of childhood disintegrative disorder. There are hypotheses that point to the condition possibly stemming from neurobiology or how the brain and nervous system are formed and function.
A study by Johns Hopkins Medicine of children diagnosed with CCD revealed about half of the children had abnormal electroencephalogram (EEG) readings. Seizures have also been associated with childhood disintegrative disorder and can indicate the occurrence of abnormal neurobiology.
What are the differences between CDD and autism spectrum disorder?
The main difference between CDD and ASD seems to be that, with CDD, the child followed a “normal” development of skills compared to their neurotypical peers until they were at least two years old and started losing those skills around three and four years old, up to ten years old. Whereas, with ASD, the child typically misses some developmental milestones or meets them later than their neurotypical peers.
What does this mean for my child?
If you have concerns about your child’s development, or regression, it is always advisable to reach out to their doctor. Your child’s doctor will have access to different resources and information and might be able to put your mind at ease.
The doctor can also examine and determine whether your child needs further evaluation or if there are therapies that can be used.
Charan, S.H. (2012). Childhood disintegrative disorder. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3401658/
Johns Hopkins Medicine. (2022). Electroencephalogram (EEG). https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/electroencephalogram-eeg