Sunday, March 20, 2011

PDD-NOS & Autism & Aspergers & Retts & High Functioning Autism and and and.... a look at DSM codes.

This week I spoke to a person who treats kids with Autism regarding Social Skills classes. I need one, she didn't have one. What she did have was a bike riding program, and wanted to know my sons' diagnosis. I said, two boys, one with PDD-NOS & one with High Functioning Autism. She said, "High Functioning Autism, like Aspergers?" and I said, "No, High Functioning Autism." We obviously had a communication issue and I rang off wondering why a person licensed to treat ASD kids didn't know the difference between HFAutism and Aspergers? I've since realized that this is a commonality between medical professionals, parents, kids, authors and everyone in between.  So I decided to write here the differences between diagnosis for all and sundry to read and explore. In my head, I know the differences between the diagnosis because I deal with 2 (possibly 3 of them) and I've had to research it so much in the last 7 years. I decided to go online and do a few simple Google searches to back up my knowledge and quickly realized that the internet doesn't know either! There are a hundred articles that back up my understanding of the Dx and then there are about a hundred more that disagree. So here's what I'm going to do.... I'll give you the information as I have it, I'll give you the DSM-IV codes to look it up for yourself and then I'll tell you that it doesn't mean a hill of beans since they are going to change in all in the next DSM release next year (according to all the doctors I've spoken to in the last 6 months). Nothing in this post should be considered medical advice as I am a Lunatic Autism Mom, not a doctor.

This is the very top of the Autism umbrella, everything below falls into this category. On a family tree this would be dearly beloved Grandma and Grandpa at the base but in this case the marriage happened hundreds of years ago and the tree took a long time to take root. Now it is large and fast growing and branching off in every direction. 

This is probably the diagnosis I am the most familiar with because it is our diagnosis for Cameron (now 9). There are words that go with this diagnosis like "regressive" Autism and "high functioning" Autism. Autism is usually diagnosed between 18mos and 4 with symptoms like hand flapping, head banging, spinning, repetitive movements, lack of eye contact, lack of pointing, inability to "connect" with people and **drum roll here** loss of speech. Usually kids with Autism will have 5-10 words that they like to say like mama, duck, cat, dada, more, etc and then one day *poof* they're gone (hence the precursor of regressive Autism). Kids with Autism can have intelligence ranging from low to high, just because they have Autism doesn't mean they are stupid and conversely it doesn't mean that they are genius'. This is, I think, the biggest misconception of Autism. As the diagnosis progresses and the kids do learn to speak and prove themselves to be of average to high intelligence they usually get the precursor of High Functioning before Autism. But because of the speech delay and possible regressive speech Autistic kids cannot be re-diagnosed as Aspergers. DSM-IV code 299.0

This presents the same as Autism but does not have speech delays or regressive speech. Typically young kids will get a PDD-NOS first then will do further testing around the age of 6 to get a full Aspergers diagnosis. This is why most people aren't diagnosed with Aspergers until much much later, sometimes not even until they are adults. People with Aspergers function well within the world but have big problems with social interaction. Historically they were usually considered quirky or eccentric teens & adults. Not all people with Aspergers are geniuses and not all geniuses have Aspergers. DSM-IV code 299.80

PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified)
Sounds like a catch-all doesn't it? Well, when Adam got this diagnosis it certainly felt that way! It means that there are too many Autism like issues to ignore, but the child doesn't exactly fit the criteria. Often this diagnosis comes with a "wait and see" quantifier. Usually there isn't a significant speech delay and usually there are only a few qualities of Autism present. The doctors want to keep an eye on their development and give them access to early intervention but the kids aren't fully categorized as having Autism. Later on, further testing can lead to a diagnosis of Aspergers. DSM-IV code 299.80

I know very little of Retts. It is primarily diagnosed in girls and presents very similar to Autism. DSM-IV code 299.80

Again, I don't know much about this disorder because I usually deal with Autism, PDD-NOS & Aspergers. From what I understand it involves typical development until age 2 and then a significant regression before the age of 10. Kind of worrisome for those parents to think "Whew! Missed Autism" when their kids turn 2, huh?  Seriously, I don't even remember this diagnosis 7 years ago when Cam was first tested. DSM-IV code 299.10

Clear as mud, right? This is probably why there is such a push to re-define the Autism Spectrum Disorders and that change is slated for next year. I guess we'll wait and see.  


  1. Forgot to mention.... this website is pretty good:

  2. Remind me, what's coming next in the DSM? They are thinking of just calling Aspergers Autism?