PDD-NOS

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I have two boys on the Spectrum who are very different: the 8 year old has AS and began speaking and reading early (he reads at a high-school level now and has an extensive vocabulary, although he is still a literal thinker and has trouble with figurative language).

The 6 year old has PDD-NOS is much different, and seems to be more challenging. His vocabulary is decent, but he struggles with communication. His pronunciation is poor for his age (maybe 2 years behind). He also struggles with things like tying shoes, etc.

While he is making progress, I don't know how much he can improve, and I worry. We have him in speech therapy and we do ABA at home (kids are home-schooled). Our health insurance excludes all Autism treatments for children, so I have to pay everything out of pocket.

I'd like to reach out to other parents that have kids with PDD-NOS. What were your experiences? What can I expect?

My 11 y/o son is also diagnosed with PDD-NOS.

Autism and Aspergers diagnoses require problems in three areas: socialization, communication, and repetitive/stereotyped behaviors. If the person doing the evaluation does not see a significant problem in one of these three areas, the child often gets a diagnosis of PDD-NOS. Many younger children get a diagnosis of PDD-NOS that is changed to an Aspergers diagnosis as the demands in all areas of development increase and the gaps between them and their peers increases.

As for what it is like, it is different for every parent. One child with PDD-NOS may have severe problems with communication and stim a lot, but have less problem with socialization and transition. Another child with PDD-NOS may have a great vocabulary, but poor theory of mind and pragmatics and anxiety leading to stereotyped behaviors. And so on and so on and so on. With any child in the autism spectrum, a famous quote is so accurate: "If you have met one child with autism, you have met one child with autism."

I have found the best thing for me is to know my son best so I can help him to understand himself, and others to understand him. Thus, we can work together on the parts of autism that make life difficult and work together to encourage and praise his strengths.

~Erica

My son 14 now was also diagnosed as PDD-NOS at the age of three, As you may be knowing by now it is just a catch all term. IMO it is important to go to next level of details to see what problems the kid has and to address those. As in my son's case his issues are more defined with keywords like, inattention, OCPD, anxiety etc. Some of these exist due to what nature did to them , some they learn from the environmnet. So please look beyond the PDD-NOS label and try to address issues separately.
Thanks, Rakesh

Please check out my website, www.freevideosforautistickids.com, for links to a lot of free educational videos, as well as catalogs of materials that you can purchase to help teach your child at home. The site is being reorganized, so a lot more information and better organization of the links and videos is right around the corner.

Thanks for the response!

And those videos look great: we will start using them right away

Sorry to be a little off topic but I was surprised when you said your health insurance wouldn't cover autism treatment. Are you in the US? I thought that the current health reforms preculded any insurance company from excluding autism services. Maybe I am wrong and this is something that is upcoming not something that is already in effect. I personally got quite the run-around from the insurance company but with the right diagnostic code from the pediatrician, they finally agreed and are covering the OT we are currently receiving.

Yeah, I thought they made it illegal in the US for insurance to refuse Autism treatment?? I think maybe private insurance can get away with it though. If you are in the US you should look up your Regional Center and they can maybe give you some help.
I wish they would get rid of PDD-NOS, just call it what it is....its Autism, its all Autism. They are getting rid of the term Asperger's, are they also doing away with PDD-NOS. Its crazy because half the kids diagnosed with PDD-NOS are said to have more severe issues and retardation and the other half says PDD-NOS is a milder form of Autism, I have also heard it called Atypical Autism whatever that means. Its very confusing and weird. I think these doctors that diagnose these kids with this are confused as well.

I just went and looked it up and they are doing away with PDD-NOS along with Asperger's next year.

I just read that your 6 year old is having trouble tying his shoes...my now 19 year old Aspie didnt tie her shoes until she was 8. She had a lot of small motor skill problems....she still cant open a pill bottle by herself. I personally think that she is more HFA than Aspergers....she is a bit different than my son and I, then again I am on the more severe side of Asperger's.....actually like it was said...."when you have met one Autistic person then you have met one Autistic person" We may have a lot of things in common but we are also very different. Some of the things I do are more text book classic autism than Asperger's and they told me that my son would have been diagnosed Classically Autistic or "Autistic" if he did not have such a large vocabulary. He is my mini me and the older he gets the more obviously Aspie he is, like me. My daughter who is obviously classic Autism and had the huge speech delay is the one with the huge IQ though LOL! My son and I have a high IQ but not like my daughter. She may not be able to have a conversation with you but she has a genius IQ and a photogenic memory. I may seem, or Ive been told, I seem very normal online and I always tell people that if they met me in real life they would be shocked or would refuse to believe that I was the same person they talk to online. I still get myself in trouble with my "honesty" online but Im loud and stimmy with people I feel comfortable with and terrified and chewing the hell out of my hands and hardly able to talk around strangers. I was able to work for many years with my anxiety medicated but once I started to work in an office (I was phlebotomist and I loved to work nights, mobile and hospitals) during the day I started having serious issues and had a couple meltdowns at work, one where I locked myself in the bathroom and my boss had to talk me out. I couldnt tell her the real reason I was upset so I said it was because my daughter was diagnosed with autism....it was actually because the other woman I worked with me tried to take the needle from me while I had it in a ladies arm because I missed the vein.....I dont like people touching me anyway and she was trying to make me look stupid when I was ten times better than she was. I pulled the needle out and she took off her gloves and threw them down all angry and my blood started to boil. It was either jump on her head or lock myself in the bathroom. I was shaking, sweating, crying....it was ugly. I knew I just couldnt work anymore even with medication. I felt like after working in that office for a year I had post traumatic stress. Being around neurotypical people and their strange office politics and "Im your friend but I talk crap about you behind your back but Im your best friend and cant wait for your BBQ but you are an alcoholic and last time you were so drunk Im surprised you didnt pass out".....I hope you understand which side of the story I got and which side the supposed friend got. I couldnt take it anymore. Im happy to be alone with my husband and my kids.

Sorry...turned this into my life story .