Saturday, March 15, 2008

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.

Originally a DC Metro Moms Blog post.


  1. Congratulations seems like a strange thing to say to someone whose child has been diagnosed with any flavor of autism. But you are right, now you have concrete information you can use to help Jack. BTW, does the report give recommendations about best educational supports and that sort of stuff, too?

    We, too, knew long before any diagnosis was made.

  2. We're in a similar boat. Same diagnosis--PDD-NOS. I spent a lot of years thinking something was wrong, but fearful that his ability to blend at crucial moments would get in the way. Crazy. Sigh...

  3. I still fight that internal battle re: pointing out weaknesses. Even with the medical dx of PDD-NOS, my district keeps playing games. I feel like they force me to point out both boys weaknesses so he can continue to be successful with help. Neither one of my kids have an educational dx of autism, and the 1st doesn't meet our state's definition for the EDUCATIONAL dx. He has an OHI dx and I'm guessing (pushing) that will be the case of Moose too (currently he is just YCDD - young child with developmental delay). The frustrating part is I have to fight for teaching methods that would benefit my boys (heck, would benefit a lot of kids!), ones that are automatically handed out to kids with the educational dx of autism. It shouldn't be that way... but here it is. :(

    You will continue to grow and falter and then grow again... it feels good in the long run. I think. :)

  4. I just think you have already taught him skills adults with his diagnosis start learning at 20 or thirty. The emotional education and expression you are giving him is quite remarkable. FYI I shut down my former blog. You know me, but I'm in the bloggers Protection Program so don't let on. I gave you the purple lion. SHHH!

  5. Hi Gloria! Your secret is safe with me. Glad to see you!

  6. I would say Jack is lucky to have a Mom who will stick up for him to make sure he gets the diagnosis he deserves! Knowing that he has autism can only make it easier to learn how he to best get him what he needs throughout his life.

  7. I remember when my son was being evaluated thinking - my God - they're never going to see it - he's acting so - so - normal! For lack of a better word. Thank goodness the wonderful ladies knew a lot more than I did.

    You've been Jack's advocate all along but it does feel so much better to be able to concentrate on his progress now, doesn't it?

    I look forward to hearing about it!
    Yay Jack!

  8. I'm glad to hear you finally have a diagnosis. And even happier that you can now focus on building on Jack's strengths.

  9. So wonderfully put.
    I know you are relieved

  10. I am sure Jack is so proud to have a Mommy like you, who stands firm and strong to go through whatever hardship there is to come. Well done Mommy!

  11. It does feel weird to congratulate a mom on her child's autism diagnosis but I am happy that you have finally been vindicated and that now you have a direction in which to go in terms of what's best for your son...

  12. I hear you on that shift of perspective. Sounds like Jack is making some mighty fine leaps. Terrific, and I'm glad you got the official Official even though you are already being a great advocate.

  13. It is hard, isn't it? AJ does not have autism or PDD but scores high on the PDD scales. We have found that having a neuropsych eval was crucial because it listed specific recommendations for the school district.

    I find myself in the same boat as everyone else here though...self doubt and he doing well enough?

    Makes it hard.

  14. My quirky little guy got the same diagnosis at age 4. He is fully mainstreamed, in a class where there is a shared aide, and he's doing great. With your love, support, and advocacy, I'm sure Jack will thrive too. Sending you all good wishes.


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