Undiagnosed PDD-NOS

Hi, my name is Brooke and I'm a new contributor to Thru the Tulips. I learned about this blog through early intervention and another mom I met there, Erin, who is also a contributor.

I have a three-year-old (well, he will be next week!!!) named Tanner who is a sprightly little boy with undiagnosed PDD-NOS.


We first thought that something might be "wrong" with him when we went to his 18-month checkup. You know how you're asked all the milestone questions? Well, at that time, Tanner "should" have had about 10 words in his vocabulary and he didn't have any. He was a bit late in reaching most of his physical milestones as well, and we (and our pediatrician) attributed it to Tanner having been born with a club foot. When we told the doc that Tanner wasn't talking yet, he wanted us to watch him and we'd bring it up at the 2-year checkup.

Six months passed and we scheduled another checkup. At this visit, Tanner should have had 20 words, and he only had about five. Our pediatrician asked us a few more questions and referred us to early intervention for speech therapy services and also encouraged us to look into getting Tanner evaluated for autism. We started early intervention a month after Tanner's second birthday.


We only saw little progress in the following months. We were able to teach Tanner a little bit of sign language so we could start communicating with him, but we were frustrated with his seemingly lack of progress. Finally, this last October, Tanner's vocabulary just exploded. He started saying words and slowly stopped using the signs that he now has words for. He has a lot of new words and is starting to speak three-word sentences. He still uses a lot of gibberish, but we're in the stage where at least Mom and Dad can understand him most of the time.

At around that same time, we scheduled a meeting with a developmental pediatrician to start the process of having him evaluated for autism. After our visit, the pediatrician felt that Tanner was exhibiting behaviors closer to Pervasive Developmental Disorder rather than actual autism. She noted some of Tanner's quirks, like lining up his toys rather than playing with them the way they're supposed to be played with.


Tanner is also very particular about the order and placement of things. My husband wrote a good example of this on our personal blog.

We saw a psychologist in November and after the initial visit, she had the same impression as the developmental pediatrician - that Tanner probably has PDD (most likely PDD-NOS) rather than autism. Unfortunately, she wasn't covered by our insurance, so we didn't meet with her for the two succeeding visits she wanted before making a diagnosis.

It's been a long, hard road raising a little boy with these developmental challenges, and I'm sure they're nothing compared to what some of you are faced with. Our game plan for now is to wait until next month to have him evaluated by the Northern Utah Autism Program. Tanner was able to qualify for preschool services through early intervention, and we're hopeful that he'll continue making progress with his speech with their help.

For now, we just take one day at a time and do our best to teach him what he needs to know. I struggle at times, worrying what people think of him, our family and friends. I worry about him growing up and what his life will be like. If kids will pick on him or if he will be left out because he's "different." I want him to experience everything possible. I don't want him to be at any disadvantage. It's a constant adjustment, realizing that I have an atypical child. But, I'm glad that he's mine. He makes me laugh everyday and I look forward to what's to come. Knowing that he struggles with different things makes me happier when he makes little strides in his progress. If he were "normal," I might not acknowledge his accomplishments as much as I do now. He forces me to see things that I otherwise may not see. And I'm glad for that.