Childhood Disintergrative Disorder?

My 10 year old son has been labled everything under the son until they got this new one of Childhood Disintergrative Disorder. I have found very littler information about it and I know very little people who even heard of it. So my question is just how common is this and what are the chances someone in my city might have info about this disorder? His IQ dropped in four years time from 98 to 60. He is on a two year old level of learning and requires 24/7 supervision. I don't know anyone to talk to about this. Can anybody relate?

Welcome to IAN, egmuell.

I am so sorry to hear about your son's situation, and the possible diagnosis of Childhood Disintegrative Disorder (CDD). I know this is a terribly difficult situation to cope with.

CDD, which is very rare, is basically a very late appearing form of autism. Instead of showing up before age 30 months, as autism tends to do, CDD occurs later. It always involves regression, since a child was developing normally for years before it occurs.

We have some limited information about it here: http://www.iancommunity.org/cs/about_asds/childhood_disintegrative_disorder_cdd

The next revision of the Diagnostic and Statistical Manual (DSM), which is the psychiatric bible and standard for making diagnoses in the U.S., is being worked on, and from what I understand one of the debates is whether they will consider CDD a truly separate condition, or just autism with later onset.

As I had said, CDD is very rare. For example, parents have submitted diagnostic information to IAN about over 7000 children with ASD. Less than 15 of these children have been reported to have a diagnosis of CDD.

CDD is considered to be one of the autism spectrum disorders, so advocates for children with autism or Asperger's would also be advocates for you and your family. As you reach out for support, consider organizations like Autism Speaks and the Autism Society of America.

Autism Speaks: http://www.autismspeaks.org
Autism Society of America: http://www.autism-society.org