April is considered Autism Awareness Month. In our house, we are aware of Autism 24/7, 365 days a year, as we have two boys that have been diagnosed with the disorder.
Autism is a spectrum disorder and each person does not present the same way. It can be very hard to diagnose Autism, because it can mimic so many other disorders, i.e., ADHD, OCD, Bipolar, for example. In fact, Caleb was initially diagnosed with Bipolar, OCD and Anxiety Disorder at the age of three.
Our boys’ are so different. Steven is much less severe than Caleb is and that just goes to show you the wide range of the spectrum that there is. And we are not even dealing with some of the most severe cases of Autism. Some families have children who are non-verbal, require so much care that they attend specialized residential schools.
What I wanted to do as part of Autism Awareness Month is answer the question of “What is Childhood Disintegrative Disorder?” Because before Caleb’s diagnosis, I never even heard of it!
Childhood disintegrative disorder is also known as Heller’s syndrome. It’s a very rare condition in which children develop normally until at least two years of age, but then demonstrate a severe loss of social, communication and other skills.
Childhood disintegrative disorder is part of a larger category called autism spectrum disorder. However, unlike autism, someone with childhood disintegrative disorder shows severe regression after several years of normal development and a more dramatic loss of skills than a child with autism does. In addition, childhood disintegrative disorder can develop later than autism does. (From www.mayoclinic.com)
When Caleb’s neuropsychologist first mentioned Childhood Disintegrative Disorder to us, the above information is about all that we could find. There is not a lot known about it at all.
In Caleb, we started seeing his regression at about five years old. He also started having silent seizures at the same time, which is a very common symptom of Childhood Disintegrative Disorder. Caleb’s IQ went from 100 at the time he was tested going into kindergarten (just before we started seeing the regression) down to 54 as of the last neuropsychological testing that we had done a year and a half ago.
Caleb has lost skills in speech, socially, academically, motor skills. As a parent it has been so hard to watch your once very vibrant child who used to meet or exceed expectations, struggle to complete tasks that he used to be able to do easily.
So that’s what Childhood Disintegrative Disorder in a nutshell! If you have any questions, please leave them and I will do my best to answer them.