childhood disintegrative disorder

mygrl4meee

My 12 year old son has had a dx of autism since 2 and half. He had the red flags for it when he lost speech that he had gained as a toddler. Fast forward. He started talking at 7 and has never shut up since. we are very proud of him. We are seeking mental health help for his obsessive behavoirs and his anger issues. I am wanting to know if the doc agrees with autism dx. He seen him a couple days ago and he had his first couseling session and we all talked for a few and she said the doc threw out that we maybe looking at childhood disintegrative disorder that is simliar to autism. When I looked it up it didn't quite match up. Anyone ever heard of this?

theartichoke

I've never heard of this so I Googled CDD and did a bit or reading. That sounds pretty serious and the fact that something like that would be casually thrown on the table without solid information being handed to you makes me doubt that Doctor. Being that the disorder is so rare and treatment and diagnosis is difficult, I would strongly encourage a second opinion if this Dr. finds him to be CDD. 2 concurring Dr.'s? Okay. One when everything doesn't fit? No way. I hope other members have some experience to share with you. You and your son are in my prayers.

alumpoflard

I too googled this, as I have never heard of it. It seems an absurd assumption for the doctor to make. Your son only regressed initially, which happens to a lot of autistic children. It sounds as if he is doing really well now. Im sure a diagnoses for something like CDD would take a lot of time and assessments, and he doesn't tick all the boxes ( hardly any in fact)...he has gained skills, not lost them. Doctors should think before they speak!

I'd also like to add that it is great to hear that your son started to talk again at 7. My boy never lost speech as he didn't really have any, he is 4 now and has started to speak, although for others it is hard to understand him. You have given me hope that we can look forward to some improvement. ( we was told by an 'expert' that if ASD kids don't talk by the time they are 6 they never will)

I hope that the counselling goes well xx

mygrl4meee

Thanks guys, I thought it was an extreme thing to come up with too. The only time my son regressed besides speech was that he used to be able to get ready for school without a lot of prompting but needs it now. He is suppose to see the doctor another time or two so I will be talking to him and letting him know that I looked into it and it doesn't really fit. Don't lose hope that your child won't ever learn how to talk. He just recently disqualified for speech so it was a lot of hard work but his speech is 100% better.

SparkleShine

I too googled this, as I have never heard of it. It seems an absurd assumption for the doctor to make. Your son only regressed initially, which happens to a lot of autistic children. It sounds as if he is doing really well now. Im sure a diagnoses for something like CDD would take a lot of time and assessments, and he doesn't tick all the boxes ( hardly any in fact)...he has gained skills, not lost them. Doctors should think before they speak!

I'd also like to add that it is great to hear that your son started to talk again at 7. My boy never lost speech as he didn't really have any, he is 4 now and has started to speak, although for others it is hard to understand him. You have given me hope that we can look forward to some improvement. ( we was told by an 'expert' that if ASD kids don't talk by the time they are 6 they never will)

I hope that the counselling goes well xx

I would definitly be hopeful that your son will talk! My son is 16 now and really didn't talk much until he was 4 and he talk ALL.THE TIME now! Haha! I also work with kids with autism and I've seen progress with speech with older kids too. My firned has triplet boys (2 have autism) One of them didn't have any words until he was 8 or 9. He doesn't talk alot but he does talk!

alumpoflard

Thanks jacki,
My son is really trying hard to talk now, he will spontaneously point out things and name them now, we only get a maximum of 3 words together, things like ' more chocolate buttons' but I think it's important that he wants to talk to us!
I have an adult nephew with autism, who speaks with up to 3 words at a time, but only when he is prompted to speak and it is very robot like. He really is in his own world and just occasionally will wander into ours. My son on the other hand now wants to be in our world which is great!
I bought a book yesterday from amazon called 'what you can do right now to help your child with autism' by Jonathan levy. I read it all last night and it is a great read and very enlightening, I am now passing it around the rest of the family so we are all singing from the same hymn sheet!
Sorry for hijacking your post mygrl4meee!