On March 21, 1995, Will was diagnosed with PDD-NOS by an entire team of very important specialists. They sat me down in a room as Will played happily on the floor and said, "Your son has a pervasive developmental disorder." And I replied calmly, "Oh I’m so glad you found such a precise and self-explanatory label for my child. I’ll go home and tell the neighbors what he has and I’m sure they’ll understand."

Well, my recollection of the exact verbal exchange may not be perfect, but I think dialogue captures the essence of what took place that day. Of course, I asked what to do for Will and was advised to just keep him home, find a good speech therapist, apply for Medicaid and come back in a year. Will was too young for the specialists to make any prognosis, although they said his degree of disability was mild.

For those who don’t have a DSM-IV handy, there are currently five pervasive development disorders. Will has the one without a real name: pervasive developmental disorder – not otherwise specified. They give you that label when you don’t have one of the other four PDDs but you have some kind of PDD.

Autistic Disorder, usually referred to as autism, is probably the most widely recognized pervasive developmental disorder. The others are Asperger’s Disorder, Rett Disorder, Childhood Disintegrative Disorder and good old PDD-NOS. All pervasive developmental disorders effect, to varying degrees, a child’s social development, communication, and activities and interests.

Although each of these diagnoses is quite distinct from the others, they are often lumped together and referred to as "autistic spectrum disorders." Will does not have autism from a diagnostic standpoint, but sometimes I refer to his disability or difference in my effort to be politically correct as autism. In many situations, it’s easier to say he has autism than PDD-NOS, which then requires more explanation than most people care to hear.

These disorders are neurologically based with multiple causes that do not include poor parenting skills. The professionals have assured me that even if Will had been raised by really good parents, he still would have had PDD-NOS.

Will is a neat kid and the last two and a half years of his development have provided his family with a most unusual education. While his life’s story may not be front page news, some background information may be interesting to those of you on a "need to know" basis.

In hindsight, I had concerns about Will from the day that we brought him home. He was very jaundiced, very sleepy, had ketones on his breath and seemed uncomfortable, but not in a fussy way. My mother listened to my concerns every few days for weeks. She reassured me that Will would show some signs of social awareness eventually and reminded me that he was an infant, not a talk show host. Perhaps I was expecting too much.

One day Will smiled at me and I stopped bothering my mother for a while. He was a wonderful baby with the disposition of an angel. Our first year was serene and happy. But by his first birthday, I was beginning to worry again. There was something different about Will, but I couldn’t put it into words.

I shared my concerns with our pediatrician. When Will was about 14 months old, the pediatrician spent an extended period of time observing and attempting to engage Will. He concluded his evaluation by concurring that Will was definitely in his own world.

As the year progressed, his language seemed delayed, but he appeared to be acquiring a limited vocabulary. He even had some complete phrases from television like, "Cookie, Cookie, Cookie starts with C" and would count out loud for no apparent reason. Then, as quickly as new words were learned, old familiar ones would disappear.

He babbled and made a lot of noise, but his sound production had an odd quality to it. The bulk of his vocalizations were made up of two nonsense phrases: digga, digga, digga, digga, digga and ning-uh, ning-uh, ning-uh, ning-uh.

I was less concerned about his small vocabulary than I was about his lack of communicative effort. He didn’t point, he didn’t whine, he didn’t take my hand and lead me to something he wanted. He never brought me a toy or book to share. He was very content to play with whatever toy I put in front of him. He began to sing complete songs like Muffin Man and Itsy Bitsy Spider and he was very engaged whenever I sang to him. But when I spoke in a normal conversational tone and rhythm, he paid no attention.

By the time he was 18 months old, Will had virtually no communicative language, initiated no social contact, and played in solitude for hours without complaint. He was peaceful and content, but his affect was becoming noticeably different from that of a typical toddler.

At his two-year check-up, our new pediatrician said he thought Will was autistic. The diagnosis didn’t make sense to me because Will was a very affectionate, loving and happy child. I was relieved that someone was finally validating my concerns, but autism sounded so serious. I was prepared for a mild hearing impairment. I thought Will had something we could fix with some tubes or maybe a hearing aid and a little speech therapy a couple of times a week. But autism was uncharted territory and I was in for the expedition of a lifetime!

Every developmental pediatrician, neurologist, psychologist, speech pathologist, and occupational therapist in all of metropolitan Atlanta agreed, Will had PDD-NOS. They all said it was mild. But, because his symptoms were not severe, the professionals who were so skilled at diagnostic work were reluctant to make specific recommendations for appropriate intervention.

Even our early intervention service coordinator sat in our living room and said, "How can we help you?" To which I replied, "This is my first PDD case. You’re the professional. You can help me by telling me what to do!"

She explained that early intervention didn’t recommend any particular course of action. They were just there to support the family in their choice of intervention services.

So I started to read. I was looking for a manual that would prescribe the right intervention plan but that’s like looking for a manual that provides step-by-step instructions to intimacy in marriage. Some things you just figure our as you go along.

Then, through an organization called Parent to Parent, I found other families with PDD kids. It was other parents sharing their intervention strategies and successes that enabled us to formulate a plan for Will. The one thing I knew was that 30 minutes of speech therapy a few times a week wasn’t even going to scratch the surface of this problem. A pervasive disorder requires a pervasive intervention plan.

Will may have seemed comfortable in his own world, but we weren’t comfortable with the idea of leaving him there. We had serious concerns about the course of his future development.

It seemed that Will was spending more time in his own world and increasingly less time in ours. But interacting with Will as if he were a garden-variety toddler had left us scratching our heads. We just didn’t seem to be reaching him. We needed a different approach.

Through a program called Toddler Talk we began to see how we could change our efforts and behavior and begin to form more solid connections with Will. We started meeting Will in his world and gently encouraging him to travel into ours.

Every minute that someone was helping Will "tune in" was a minute that he wasn’t learning new ways to "tune out." Time that Will would put his head on the floor and roll cars back and forth in front of his eyes was slowly turned into time that Will would take turns pushing a car back and forth with another person.

Days that Will was allowed to just hang out with the neighborhood kids were days that he appeared more withdrawn and bizarre. Days that we struggled to keep him interacting with people were starting to pay off. Every minute of carefully orchestrated effort on our part was resulting in just a bit more social reciprocity on Will’s part. We realized that it was essential to fill as many of Will’s waking hours as possible with some type of purposeful engagement.

We hired three wonderful teachers to each spend about ten hours a week working and playing with Will. We designed a curriculum to teach him things that other children his age were just picking up naturally from their environment. We spent a lot of time on the floor playing with Will, joining him in his games and showing him how to play with us. Once we started more structured teaching, Will’s enthusiasm for social interaction began to emerge quickly.

Odd as it may seem to parents of typically developing children, repetitive drill work was Will’s first bridge to successful communication with others. It hardly seems like an activity a child would choose as a means to form social bonds, but drill work was predictable and safe for Will. The consistent and reliable praise from his teachers was an instant motivator. Not only did Will seem happy that his efforts were being acknowledged, but he had more control over these predictable interactions than he did over the random interactions of daily life.

Once Will began to enjoy and seek the companionship of his teachers, it became apparent that he could learn in many ways. Drill work was fun for Will, but he was beginning to demonstrate how he was learning through other means. We used a variety of teaching strategies and techniques. We listened to Will and watched him and altered our methods as Will’s needs changed.

Aside from the fact that there was always at least one extra body in the house and in Will’s face, we tried to keep his life as normal as possible. Two mornings a week Will went to a typical preschool in our neighborhood. We placed a facilitator in the classroom to help the teacher and children interact successfully with Will. We enrolled him in Gymboree and Kindermusik, were he had opportunities to model typically developing peers in social environments. Will also ventured out with his teachers on lots of field trips to important places like Target, Wal-Mart, Kroger, McDonald’s, Zany Brainy, Toys R Us, and the neighborhood playground.

In spite of the intensive efforts of Will’s devoted and loving teachers, his autism hasn’t just gone away. Will has made phenomenal gains in many areas, but he struggles with the challenges of serious neurological deficits that interfere with language and sensory processing and communication efforts.

Will is not developmentally delayed. His development is uneven. It’s hard for many people to understand why a four-year-old who is already reading and academically ready for kindergarten has the coping skills and emotional maturity of a two-year-old.

Will’s ability to control and maneuver a 16" bicycle with training wheels at the age of three was unusually skillful, but he was unable to jump. He still has difficulty negotiating uneven surfaces such as stepping on or off a curb, but has no trouble alternating steps when climbing or descending an entire flight of stairs. His fine motor skills are not consistent with his overall motor development. He has impressive and articulate verbal imitation skills, but slow and labored production of similar phrases during spontaneous or volitional speech. He has tested beyond the seven-year-old level on standard vocabulary tests but his pragmatic language is severely disordered.

Our neurologist says that Will is a little tangential. He came up with that label when he asked Will what he liked to eat at McDonald’s and Will replied, "My order."

When you have a conversation with Will, a lot of what he says is different from standard four-year-old banter. His eye contact is inconsistent and sometimes he doesn’t respond, but he usually understands what others are saying and is very aware of what is going on around him, even when he appears to be focused elsewhere. Will’s questions, responses, and behaviors may lead the untrained observer to think he is not grounded in reality, but that’s not the case. Will just experiences reality from a different perspective than that of most other people.

Our neurologist explains it this way: Will is tuned to channel 9 and the rest of us are on channel 7. We can’t get channel 9. But Will has "picture in picture" capability on his set. His channel 9 is the big picture and our channel 7 is in a little corner of his screen. Will is processing both channels simultaneously. The one he receives clearly is completely foreign to us and the one we’re on is often snowy for him.

I don’t know if this explanation is true, but it seems like a plausible explanation for some of Will’s peculiar interactions with his environment. It’s the old, "garbage in garbage out" philosophy. If Will’s sensory perceptions are distorted, his behavior will seem odd because his output can only be as "normal" as the input he receives.

On a clear day, when the reception on channel 7 is strong and the channel 9 broadcast is not particularly interesting, Will is able to stay focused on our reality and his affect is more "normal." When he seems a little strange or foggy, we can only assume channel 9 is broadcasting a very captivating program.

Will is more "normal" than he is different, but his differences are noticeable and they make life interesting and occasionally a little challenging for those around him. These differences make a lot of sense if you take the time to know and understand him. I had to do this because I’m his mother but it really has been fun, so I encourage people to give it a try.

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