Childhood Disintegrative Disorder

Often Misdiagnosed Or Missed Altogether

One of the most closely associated and often co-diagnosed with autism disorders is childhood disintegrative disorder(CDD). When this particular disorder begins to manifest itself, the child is often much farther along in their years and development and it makes it more difficult to diagnose. More extreme cases start earlier and look like autism, until the disorder progresses.

What is Childhood Disintegrative Disorder, precisely?

While it belongs to the same family of disorders and some doctors even classify it as part of the autism spectrum, it’s much more severe in its affects. It may begin as early as age 2, or start as late as age 10. The affected child grows, develops and hits all milestones normally, and then, suddenly begins to regress at a very rapid rate. Social skills, communication, and behavioral issues are at the heart of the disorder, although some physical regressions are possible too. Essentially all the child has gained over the first few years of life disintegrates, and it’s entirely lost. They return to an earlier state of life, some almost to the point of infancy. (It’s very heartbreaking and tragic for parents because you can’t see it coming and you can’t stop the train wreck as it’s happening).

Why is it on the autism spectrum?

Autism spectrum disorders are largely classified as Pervasive Developmental Disorders(PDD), the class of disorders that affect young children and keep them from growing and maturing into adolescence and adulthood in the same way as their peers. Because many of the developmental areas that are affected are the same between autism and childhood disintegrative disorder, and both fall under the main diagnostic category of PDD, doctors place them all on the same spectrum. There are a few doctors who disagree, however, because of the rapid declination and reversal of growth makes childhood disintegrative disorder appear to be a unique disorder all on its own and not part of the spectrum.

Is CDD known by any other names?

Yes. It’s also referred to as Heller’s Syndrome, named, obviously, for the man who first recognized it for what it is. Austrian educator Theodor Heller wrote about his dementia infantilis in his journals in 1908. With all the research in the past two decades on autism, Heller’s research and records are receiving recognition.

How is it diagnosed?

That is the most difficult part of the disorder. Because certain physical disorders lead to its development, doctors try to rule these out first with blood work and neurological scans. In the event that this evidence isn’t present, a thorough history is taken from the family and psychological tests are performed to rule any psychoses out as well. Because of the long and intensive process of trying to find the “right” diagnosis and the rarity of CDD, most doctors just assume the child has autism or asperger’s instead. Persistent parents can make sure that whatever diagnosis they receive is the right one, instead of just accepting the face value of what they’re given. Autism and asperger’s do not continue downhill, and that is the major significance for parents looking to get their child the proper diagnosis and treatment.

Is there a cure?

No, just like autism and all other PDD’s, there is no cure. There is also no way of knowing the disorder’s true causes or origins as autism itself hasn’t been genetically mapped out yet either. There are only some reasonably effective treatment plans available for handling the challenges the disorder presents.

Does it affect boys and girls equally or one more than the other?

The disorder is even more rare than autism itself, such that many doctors confuse it for autism because not enough cases have been seen to know the difference. Approximately 1-2 out of every 100,000 children have CDD, and of those, more than half are boys. It would seem that it is somehow connected to the Y chromosomes, which are responsible for turning female fetuses into boys in the womb, but it’s difficult to prove at the moment.

What kind of delays or signs should I look for?

Parents usually don’t even know what’s happening until it’s already begun. As previously stated, the child will grow at a perfectly normal rate, and then things just start happening that are out of the ordinary. The child may begin to vocalize concern over what is happening to them, or they may talk to or about things that aren’t present in the room to others. Healthy interactions with friends or peers will dissipate to the point that they act like a child with autism, and communication could return to babbling, confused speech, loss of comprehension in what is said, etc. Behaviorally, they will become erratic and irrational, physically aggressive, and even hostile. If they are older, they may not be able to dress themselves, clean up after themselves and may even lose the toilet training they had gained only a few years before. In extreme cases the child may even lose the ability to walk or stand, relying on assistance from the parents or assistive devices to get around. In some children the decline is a torturously slow process, taking them into their teen years before it stops. With others it could be a week or a month before the clock has been wound all the way backwards. That is why the disorder is perhaps the most frightening of all for parents who suspect their child has it.

What kind of treatments are available?

Behavior modification/ therapy, physical therapy, and some medications have been proven to help. Stimulants like caffeine and other “up” drugs only make it worse. Anticonvulsants are used with children who have experienced seizures as a direct effect of the disorder.

What should I look for in a doctor for my child?

Applied Behavior Analysts can do a majority of the testing, but in the event that CDD is suspected, a neurologist will have to be consulted as well. A full panel of tests is needed to get to the point where you know what kind of therapy to get your child the help he/she really needs.

Learn about,”Respite Care for Children with Autism“.