(PDD-NOS) is a 'subthreshold' condition in which some - but not all - features of autism or another explicitly identified Pervasive Developmental Disorder are identified. PDD-NOS is often incorrectly referred to as simply "PDD." The term PDD refers to the class of conditions to which autism belongs. PDD is NOT itself a diagnosis, while PDD-NOS IS a diagnosis. The term Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS; also referred to as "atypical personality development," "atypical PDD," or "atypical autism") is included in DSM-IV to encompass cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met.
So it means sorta autistic but not actually autistic and not aspergers but somewhere on there....we think.
I count myself lucky (now). Classic autism is much more involved and difficult to pin down and treat. We went through all the classic therapies and added chiropractic, vitamins, supplements, cranial therapy, psychological sessions, etc. Since he didn't really have a great dx (diagnosis) it was hard to know what direction to go. After one really bad month we went to to a psychiatrist and he said that he had OCD and major anxiety which also involved sensory issues (auditory for Parker) and behavioral issues in an effort to get away from all the auditory overload. Basically some kids cannot filter out some of the things around them so they hear the TV, phone, all conversations, humming lights, noises outside, etc. Parker was put on an anti-anxiety and an anti-psychotic that is used for OCD. Within days we had a new child. His language exploded, he was calm but not catatonic, he interacted it was amazing. I wish that some of the non-pharmaceutical options worked for Parker but each child is different. Some do great on the gf/cf free diet some don't, some respond to therapy and some don't. As a parent I think you are at least obligated to try them all. Some kids don't respond to anything. It is a very hit and miss thing.
We have had minor setbacks but most are with Parker going completely mainstream and dealing with that. I will take that setback any day over all the crap we went through before. His IQ is above average and he is still in the top math and reading group. They actually had to bring him down a level reading wise because there was not a group that was reading as high as him :)
He is no longer considered to be on the spectrum at all. He still has some social issues to overcome but I consider him a walking miracle. He is so bright and smart but still says the funniest things. I thank God that he has Reece and Connor because they teach him things that cannot be learned in therapy like punching a kid in the face when the teasing goes too far (our very first referral to the principal!). Seriously though he has come so far and I am very grateful for that.
For others though this is a struggle that is 24/7/365 and maybe for life. It is a difficult way to live. Just the time and money involved is more than most families can give because insurance does not cover autism therapies because they are considered experimental. ABA which has been prover to get kids off the spectrum is an intense 40 hour a week therapy. It can cost $65 an hour. Obviously most kids do not receive this treatment because it is not covered. An hour of Speech and OT is not going to do anything to help these kids. I am really excited that Obama has put so much money towards research and special education. I hope that this may be the beginning of something good for these families. Goodness knows they need it.
Jenny McCarthy is an amazing person and I cannot say how highly I regard her. Her books are wonderful and I urge everyone to read them. She and her sons pediatrician have written a new book called "Healing and Preventing Autism". I plan to get it today. Although Parker is no longer anywhere on that spectrum there may be some things in there that I can use to get him past the tail end of this.
http://search.barnesandnoble.com/booksearch/store.asp?EAN=9780525951032&distance=2&zipcode=40241&x=0&y=0
