Our Journey Finally Has a Name

As I wrote at the end of my last post, we went to the neurologist today, and my son has finally received a formal diagnosis of PDD-NOS, which stands for pervasive developmental disorder not otherwise specified. This condition is on the autism "spectrum". That means that it contains many of the features, but not all of the features of classic autism. Although I have suspected for a long time that my son had precisely this, I was surprised to find that I felt very upset when the doctor actually said it, and I felt like crying. It was a relief to hear someone in the medical profession finally confirm what I had suspected, and a formal diagnosis opens up more services to my son and our family. However, I still feel a little shell-shocked and upset. I was a little surprised at this.

However, as an audiologist, I counselled many parents, and always kept in mind that when a parent finds out for the first time that their child has a hearing problem, they go through the stages of mourning. In fact, we often set a separate appointment at a later date to allow the parent to process the information before going through all the information they are going to need to know. So, I assume that I am going through the same thing.

My son has never had a definite, specific diagnosis, although he has been diagnosed with many individual disorders and disabilities including global developmental delays, sensory integration disorder, attention deficit hyperactivity disorder, dyspraxia, and hypotonia. He also has obsessive compulsive tendencies and unusual social behaviors.

All of these things are common findings in children with PDD-NOS. Here is a website that explains it well:

http://autism.about.com/od/whatisautism/f/whatispddnos.htm

PDD-NOS stands for pervasive developmental disorder not otherwise specified. In essence, it's a diagnosis that means "on the autism spectrum, but not falling within any of the existing specific categories of autism."
To explain more fully, there are five disorders that fall under the category of "pervasive developmental disorders" (PDDs). These include autism, Asperger syndrome, Rett syndrome, fragile X syndrome, and PDD-NOS. Autism, Asperger syndrome, Rett syndrome and fragile X are all specifically described in the DSM-IV -- the manual that practitioners use to diagnose neurological disorders.
Many children have some symptoms of one PDD and some symptoms of another, but not enough of any one of the four specific disorders to receive a diagnosis. Thus, they do have a PDD -- but they do not have Rett syndrome, fragile X, Asperger syndrome, or autism. As a result, they receive the catch-all diagnosis of PDD-NOS.
There is a common belief that the diagnosis PDD-NOS means that a child has, in essence, a touch of autism. In fact, this may be true or untrue. A child may, for example, have only a few mild symptoms of a PDD and still qualify for the PDD-NOS label. On the other hand, he may have very severe delays in language and communication skills, but still not qualify for a specific autism diagnosis.
At present, physicians are not in agreement as to exactly when a child should be diagnosed with PDD-NOS, autism, or Asperger syndrome. As a result, it is very possible for the same child to receive different diagnoses from different physicians while exhibiting exactly the same symptoms.

So, now we have to start visiting more specialists again to look again at genetics, psychiatric issues, gastrointestinal issues, behavioral issues, and metabolic issues. Thank God we have great medical insurance. It's expensive, but we have no copays for doctor visits and don't need any referrals. So, here we go on a new journey...well, the same journey, but now it has a name.