Childhood Disintegrative Disorder is functionally similar to Autism, but is much rarer and the effects are devastating. What can a parent do to help their child?
Childhood Disintegrative Disorder is also known as Heller's Syndrome. It is often considered a form of autism, but there are notable differences between the two disorders, and both are considered closely related branches under the overarching Pervasive Developmental Disorder,or PDD, tree.
Functionally, it is similar to autism, in that the affected child will have delays in language and social skills, as well as motor skills. However, Childhood Disintegrative Disorder, or CDD, begins to appear later than autistic symptoms usually do. In general, autism will begin to show in a child under three (3) years of age. CDD can appear in a child as old as ten (10) years of age, and sometimes older.
The difference between standard autism, and Childhood Disintegrative Disorder is that the child will be affected after he or she has already learned certain key skills in development. The child may progress normally in motor skill, language, social skills, toilet training and self care; however, once CDD begins to show its effects, the child will regress, or lose, skills in all of those areas.
This regression can be slow or fast, depending on the child. If it occurs slowly, the parent may not notice the differences for a long time. When it occurs rapidly, the child can show great confusion, knowing that they are “forgetting” things, and not understanding why. While this is certainly difficult for the child, for the parents it can be even more so, and, given that Childhood Disintegrative Disorder is very hard to diagnose, the damage can be done for quite some time before it is fully diagnosed.
This loss of skills, and the pervasiveness of this disorder are simply devastating, and the regression so complete as to cause the child to lose almost every skill they have learned. It is as if a set of light switches on a wall are being turned off one by one.
There is no one known cause for Childhood Disintegrative Disorder, and, as with autism, there is no cure. Once the regression in skills have taken place, the skills must be relearned, if possible, and sometimes the child will not learn them as effectively as they once did. Some sufferers of the affliction will never recover the skills, and permanent care is necessary.
Behavior therapy and medication will help in certain areas of development, but will not bring about a cure to the disorder. Many times, aggressiveness will show in those who are suffering CDD, often due to frustration.
This authors' child, a son, who was diagnosed with CDD at the age of 5, notes that often, over stimulation will cause aggressive behavior, and this is common knowledge with parents of CDD sufferers. When over stimulated by environmental causes, such as loud noises, crowds of people, or rapid changes within the household or environment, will cause this aggressive or frustrated behavior to show, and the child must be given a chance to “get away”, usually to a quiet, secluded place that is familiar to them, in order to calm down.
Some medications, such as anti psychotics, will help with the aggression, but it is not always effective, and some parents prefer to not medicate their children in that way. Some children do not need it altogether, rarely showing aggressive behavior.
Overall, sufferers of Childhood Disintegrative Disorder will likely need life long care, being unable to take care of themselves well enough to live independently. It is important for the parent to realize that CDD likely has no one cause, and that ensuring the child lives in a safe and secure environment is key to helping them maintain as much of a normal lifestyle as possible.
Much research is being done into the treatment of autism, and, as a close relative of autism, sufferers of Childhood Disintegrative Disorder will benefit, as well. New treatments and medications are being developed which show promise in assisting the children afflicted, but, in the mean time, ensuring a good support system for the child, as well as the parent, is crucial to recovery.
As with those who suffer from autism, the small steps for victims of Childhood Disintegrative Disorder make the treatment process much easier, and each child will have a different set of needs and victories.