It's a duck!

When Connor was a little younger, he was in an early intervention program designed to work with high functioning Autistic children and prepare them for mainstreaming in traditional schools. Connor rode to school on a bus, along with another autistic child who was in the same program, although he was in a different class. Connor and this other child became friends and Connor even attended his birthday party. As our sons played, my wife and I got to know the child’s parents… two great people. While our methods, as parents, may have differed when it came to how we viewed and treated Autism, our dedication to our child’s well being was the single most important driving factor.

Although Connor and the other child have gone off to separate schools and don’t see each other anymore, I still keep in contact with the child’s mother. This is made much easier, as we are on a community groups Board of Directors together. Periodically, we give each other updates on how our sons are dealing with things and what type of resources we are making use of.

Most recently, the mother informed me of a rather unique struggle that they are going through. This struggle is caused by an issue with the child’s original diagnosis and the services available to him. You see, when they originally became involved with the regional center, he was diagnosed as PDD-NOS. For those that are unaware of this diagnosis (admittedly, I was unaware of it until Connor was diagnosed with Autism) PDD-NOS is the catch-all diagnosis for a person who meets some, but not all, of the criteria of Autism, Asperger’s Syndrome, or Rett Syndrome. At first, this diagnosis did not seem to be a hindrance, as the early intervention programs worked with all pervasive developmental disorders. Unfortunately, as he moved on to a traditional public school, issues became more evident. This has been, unfortunately, exasperated by the increasing budgetary problems facing the schools.

The most interesting part of this whole story is that the mother is actively pursuing a second opinion on her son’s diagnosis, hoping that during a re-evaluation, they will see the traits her and her husband have always seen and will change the diagnosis to Autism. You see, although there may be only one criterion out on the DSM-IV differentiating Autism and PDD-NOS, the level of services are different. In fact, in some cases, people diagnosed with PDD-NOS are not even considered for services that are offered to people diagnosed with Autism, Asperger’s Syndrome, or Rett Syndrome.

It is truly an unfortunate fact that in the world of Pervasive Developmental Disorders, if you don’t have Autism, you are somehow less deserving of services. This is truly disturbing when you look at the variation in the severity of symptoms between individuals with Pervasive Developmental Disorders. It is not uncommon to find a person who has severely impaired speech, social, fine motor skills, etc... who does not meet the criteria for Autism, while finding another person who is very mildly impaired in speech, social, fine motor skills, etc… that meets all of the criteria. By the standards of care that we see today, the person who, realistically, is less impaired would be more likely to get services than the person who is more severely impaired.

Even worse, this concept of different services based on diagnosis is leveraged by providers to lessen their costs. I have heard of many stories in which a school district or regional center has requested that a child be re-evaluated, to see if they still meet the criteria of the original diagnosis. And that, my loyal readers, is the most disturbing trend that has come out of this. It frightens me to think that the people who profess to have our children’s best interest in mind are actually working off a checklist of symptoms, to the ultimate goal of preventing them from getting services.

In the long run, this comes down to a debate on what Autism really is. For those that (wrongly) believe that it is a disease, the system works right. The services are seen as steps to recovery and the re-evaluation is simply a progress check. For those, like myself, who understand that Autism is a fundamental difference in the way the brain is structured and how it functions, there can be no cures, only work-a-rounds and coping techniques. You can’t simply re-wire someone’s brain to function neurotypically.

At the heart of this, the solution is simple. Services should be offered equally to anyone with a pervasive developmental disorder. This will drastically reduce the desire to re-evaluate someone every year to see if they have had enough training in eye contact, controlling their environment, etc… and can be diagnosed as PDD-NOS, there by lessoning the “burden” on the provider.

What it all comes down to is that if it looks like a duck, it quacks like a duck, and walks like a duck… it’s a duck.