Imagine that your child had a normal birth, seemed to be a healthy infant, and passed all his normal developmental milestones until age two. Even from the age of two to four, he was a cheerful toddler and child, smiling, developing language, and using the toilet. Then, gradually, he started to deteriorate. He began losing interest in other people socially, and his use of language seemed to regress. He started soiling himself, and developed curious motor behaviors, like hand-flapping. Little by little, what was once a normal child now appears to be autistic in nature. This is the agonizing reality of childhood disintegrative disorder.
How is it diagnosed?
One of the key factors in diagnosing this condition is that there is evidence the child had normal development from birth to at least two years prior to the regression occurring. The second factor is that the symptoms which begin to manifest are autistic-like. The physician must also rule out other possible explanations, such as childhood schizophrenia, which can have similar symptoms.
For some time it was thought that this condition was neuropathological in nature. But there has been no significant evidence to support this, and we still appear to be baffled by the cause or onset of this condition. It has been suggested that it may be attributed to some kind of problem in the central nervous system.
Fortunately, childhood disintegrative disorder is relatively rare, and is ten times less likely to occur than classic autism. Unfortunately, the prognosis is not very good, with an outcome predictably worse than that of children on the autism spectrum. As is true with autism, these children are at risk for seizure disorders.
What can be done?
Children with childhood disintegrative disorder are eligible for special education services, according to the Individuals with Disabilities Education Improvement Act of 2004 (IDEA). The child should receive behavioral therapy, speech therapy, and any other special accommodations necessary to assist the child in school.
Parents should seek support through counseling and by finding other parents in the same predicament. For information on finding support, see my blog, “Finding Support: Parents of Special Needs Children.”
For more information on childhood disintegrative disorder, a list of articles can be found at the National Dissemination Center from Children with Disabilities.
Kristyn Crow is the author of this blog. Visit her website by clicking here.