Saturday, March 15, 2008

DCMM: It's Official: PDD-NOS

I started blogging slightly less than a year ago. Shortly after starting my personal blog, I started to suspect that my son Jack was autistic. Over the course of a few months, I came to steadfastly believe this.

Not everyone else did.

I heard from a lot of people. Teachers and therapists, people who evaluated him for the county, some of my friends and acquaintances who thought I was crazy. Many of these people didn't agree with me.

But I spent hours with him. I micro-analyzed his behavior. I did research and reading. I knew Jack was autistic. I became one of those people looking for a diagnosis. I was the mom who was not devastated, but rather relieved to finally start hearing people who agreed with me.

A couple of months ago we had Jack screened for a study on autism at the National Institute of Mental Health. I'm all for research, as long as it doesn't harm or adversely affect my child, so this was a natural. But perhaps more importantly, it got us a diagnosis.

We got the report last week in the mail. Amid six other pages was this: "Results of this evaluation...indicate that Jack meets current research criteria for a diagnosis of pervasive developmental disorder, not otherwise specified (PDD-NOS)."

For those of you not familiar with the autism spectrum, PDD-NOS is on it. I finally got my vindication. Jack finally got his diagnosis. We finally have some ammunition to take to the school system when we have our next IEP and figure out our plan for his education.

Since last week, when my suspicions were confirmed, I have noticed a shift in my perception of Jack.

I have spent the past year or so looking at his deficiencies and his differences. I spent a year thinking, "That is an autistic behavior." I spent a year saying, "That is not a typical 4-year-old response to this situation."

I know my journey as his advocate does not end with a diagnosis. I'm aware that being "high functioning" will make it difficult for him to get services. While I know we may still have to fight for those services, I've started noticing some different things.

I've started looking at his new ability to tell me how he feels and to hold simple conversations. I've started thinking, "He's beginning to relate to other children." I've started saying, "He's making incredible strides in his behavior."

No longer do I see his advances and worry that they will stand in the way of his getting a diagnosis. I'm less worried that he will let these strengths show through when we're with doctors, muddying the waters of his autistic nature. I see these things as progress in his growth as a special and wonderful person.

It feels great to put that part of our battle behind us. Instead of pointing out his weaknesses, I feel better in pointing out his strengths and thinking about how to facilitate giving him more strength.

And I think that is a better way to be his advocate.

Original DC Metro Moms Blog post. Crossposted at Stimeyland.

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