Personal Stories
PDD-NOS

Anna's Story

Anna was late meeting milestones and started early intervention before the age of one. Multiple tests, procedures, and specialists' visits could not tell us what was wrong with her. As she got older, physical milestones were met, yet she continued to get more complicated. By age two, her list of labels included hypotonia, failure to thrive, microcephaly, global developmental delay, and sensory integration dysfunction (now referred to as sensory processing disorder). Her fear of loud noises, especially involving other children, led us to seek out therapy specifically designed to help her deal with her sensory processing disorder.

At the age of two, Anna started sensory integration occupational therapy (SIOT) through a private practice. In the waiting room, there was a comfortable camaraderie between the mothers as we all chatted away the hour or two our children were receiving therapy. I remember hearing one mom say that her son had PDD, pervasive developmental disorder. In my ignorance, I thought that the term GDD, global developmental delay, somehow graduated to PDD once a child reached the age of three. I did not realize that PDD was an autism spectrum disorder. Back then, when I heard the word autism, I thought of children locked in a world of their own, nonverbal, unable to connect with the real world and the people around them.

In her last year of PPCD (preschool program for children with disabilities), she'd been dealing with seizures and medications for about a year. It was a hard time for her. I visited the classroom for a Thanksgiving celebration and was surprised to see how much Anna was struggling. The noise of the classroom was causing her to shutdown; she wasn't interacting with the other children at all and spent a lot of time with her hands over her ears. Out on the playground, she rode this little tractor around and around the entire time they were outside. I asked the teacher if she always acted like this, if she didn't play with the children and did her own thing. The teacher indicated that this was routine for her while outside and needed lots of reassurance in the classroom.

I got into the car and burst into tears. She looked like such a different child than the one I knew at home. Although, if I was completely honest with myself, there were some behaviors at home that were beginning to worry me also. She was taking noisy, musical toys, turning them on and holding them to her ear. She was standing in front of the TV with her face pressed against the screen for minutes at a time. But I didn't think too much of these random events, especially because we were also dealing with seizures and medication... and I attributed her behavior to side effects of these things. When I got home, I googled autism and found the description for pervasive developmental disorder, not otherwise specified. The more I read, the more astounded I was. I thought to myself, "Why has no one told me about PDD-NOS?" I found an online screening questionnaire and the results put Anna on the mild end for moderate PDD.

For a diagnosis of PDD-NOS, a child must have impairments in the following categories:

• Social Interaction
• Language
• Symbolic or Imaginary Play

Here's what PDD-NOS means for Anna...

Social Interaction

Anna has always startled easily. She was diagnosed with sensory processing disorder at age two; her vestibular system is particularly out of whack. She's always had a fear of loud noises, especially coming from other children. She frequently covers her ears. She prefers the company of adults and does not have age appropriate peer relationships. Other subtle symptoms include:

• Facial expression doesn't match emotion (she laughs and smiles when she's scared)
• Fear of crowds, restaurants, concerts, noisy places
• Discomfort with direct eye contact
• Inappropriately anxious and scared

Language

Anna was 6-18 months delayed in both expressive and receptive speech until she was nearly five. She received speech therapy from 18 months to age 5. Other subtle symptoms include:

• Echolalia
• Voice louder than appropriate
• Difficulty understanding abstract concepts
• Repetitive speech
• Difficulty sustaining conversation
• Pronoun confusion

Symbolic and Imaginary Play

Anna has never played with toys appropriately. Everything went into her mouth much past the age of oral exploration. She preferred to dump objects, swing, play with water, listen to music, or just play with balls. Now, at age 6.5, she will do some guided imaginary play with a baby doll, but her interest only lasts for a short time. She prefers to play athletic games, but not with other children. Other subtle symptoms include:

• Mouthing objects
• Poor motor planning
• Restricted interest in toys
• Difficulty stopping repetitive activity
• Frequent obsession with one activity
• Intense need for routine

She has other quirks that I now know are shared by other children with autism spectrum disorders. They include:

• Trouble sleeping through the night. She takes melatonin to help her fall asleep, though she periodically wakes for an hour or more during the night.
• Lack of understanding about danger. We jokingly call it Ultra-Danger Syndrome. Anna has touched the top of a hot light bulb more than once. She's gotten a mini-blind cord wrapped around her neck. We once found her putting the plugged in hair dryer under running water. She choked on, then swallowed, a hair clip that had to be removed by emergency endoscopy. She's eaten a tube of Desitin. The list goes on.
• Need for tactile reassurance, fear of separation. Anna is very attached to her adult caregivers. She likes nearly constant physical contact to feel safe.
• Late potty training. Anna potty-trained at age 5.5, though still needs a pull-up for a bowel movement.

There are other symptoms for PDD-NOS and autism that Anna does not exhibit, but there are enough to place her on the spectrum. Each child with PDD presents differently; the stories of each child are as unique and individual as the child. This is Anna's Story.