Considering the Options

By Kate A. Griffith

The topic of this issue of Options–autism–is something I happen to think about every day. Last fall, my son, Foster, was diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). PDD is sometimes described as the umbrella diagnosis for autism disorders; others describe it as the diagnosis given to those who don’t quite fit the classic criteria for autism.

Foster was a beautiful China-doll baby. He had pale, pale skin, deep blue eyes and fiery red hair. He came into the world just 18 months after the birth of our first son, Reilly, and while many people thought the boys looked very similar, they looked nothing alike to me. Within days of Foster’s birth, I realized he was totally different from his older brother.

I wish I could tell you what exactly was different. Yes, he had red hair and his brother was blonde. Yes, Foster needed to be swaddled very tightly and had trouble getting the hang of nursing. Aside from those things, I couldn’t seem to put my finger on what was troubling me.

As the months passed, I became more and more worried about our son. He held his arms at this very odd angle behind him, almost like he was playing airplane. There was no such thing as tummy-time for our baby – he would scream bloody murder the second you laid him down on his belly. When he wasn’t sitting up on his own by 9 months, I finally convinced the pediatrician that Foster needed to be evaluated by Early Intervention. By the time his referral and paperwork were completed and an evaluation was scheduled, Foster was 10 months old. He had the gross motor skills of a six week old.

With the help of a seasoned physical therapist, Foster soon was sitting up and crawling. He started walking when he was about 15 months old. We thought that was the end of Foster’s troubles. Up until that point, it just seemed like Foster had low muscle tone. He was babbling and eventually started talking… and he showed none of the “classic” signs of autism.

Looking back, I realize there were tiny signs along the way. I suppose it was unusual that Foster could sit and play by himself for hours at a time, and that he wanted nothing to do with any toys that weren’t trains. He didn’t seem to care much for anyone other than me and his older brother. Actually, I thought that was cute. Reilly and Foster were born to be best buddies.

There was a spell–from the ages of about 18 months to about three and a half–where Foster raged. I just didn’t understand what was going on with him. Frankly it scared me, and I blamed myself. What was I doing wrong? Why was my child so angry? I worried almost constantly that he was going to hurt himself or someone else. The only thing that seemed to calm him down when he was in a fit of rage was to wrap him tightly in a blanket and hold him until he passed out from exhaustion. I didn’t know then that the deep pressure of swaddling him like an infant was very comforting to his over-stimulated, stressed brain.

After Foster started wearing glasses when he was three, he seemed to calm down a bit. I rationalized that he had just been cranky because he couldn’t see anything, but it wasn’t long before my husband and I started worrying about Foster again. He was less cranky, but he also seemed generally less present. We often said Foster was in Fosterland. We knew he could hear, yet the things we said to him often didn’t seem to register. And he still didn’t seem to like other people.

By then, the thing that was really starting to bother me was finally surfacing – Foster wasn’t growing out of it. He wasn’t growing into a typical child. It was like the cobwebs in the corners at your house – you don’t really notice them until you’re giving someone the quick tour. Suddenly you feel like you are looking at your own home through someone else’s eyes – and it doesn’t look the way you thought it did. When I took our son to public places, he looked so odd, and it just broke my heart. We went to an Easter egg hunt one time and Foster was so confused; he didn’t pick up a single egg. He just stood there staring at the other kids. It was like he didn’t know what to do. I wondered how he couldn’t figure that out just by watching the other children.

Around that time, some of the more classic signs of autism started to surface. I noticed that Foster walked on his toes a lot. Sometimes he would bang his head on things. A friend of mine called him the “little professor.” That same friend told me her son had a form of autism, and said she thought Foster had the same thing – Asperger’s Syndrome. I balked, and said “No, Foster doesn’t have autism. He can talk!” But after that, I couldn’t take my eyes off her son. After several months, I finally started to research Asperger’s Syndrome. One of the first things I learned about children with Asperger’s is that they indeed sound like little professors, and I had to admit, Foster was the only four-year-old I knew who used words like “actually” and “undignified.” Most adults find Foster charming – they don’t have to talk at a preschool level to communicate with him.

After reading some great books on Asperger’s Syndrome and gleaning as much useful information as I could stand from the Internet, I finally prepared a three-page report about Foster to present to the pediatrician, listing Foster’s prominent symptoms, like the odd speech patterns and toe walking and his inability to connect with his peers. The pediatrician agreed we should have Foster evaluated by Dr. Rick Dowell, a pediatric neuropsychologist at Evangelical Hospital in Lewisburg.

Several hours of psychological testing later, Foster ended up being diagnosed with Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), probably because after a certain point in the testing, Foster would do nothing more than scribble and talk about Thomas the Tank Engine. Children with Asperger’s tend to have higher intelligence and lower motor functioning. That’s what we see in Foster in our home setting, but it didn’t translate during the testing. His diagnosis will likely evolve to Asperger’s as he gets a little older.

Because Foster was already receiving regular physical and occupational therapies, we have chosen not to add any therapies to his plate, but rather to focus on his diet and his interpersonal skills. We know he does brilliantly well communicating with adults – the goal now is to get him to understand and relate to his peers. I think that’s easier said than done. Just a few weeks ago, one of Foster’s preschool classmates was speaking to him as we were leaving the school. Foster appeared totally deaf to the sound of the classmate’s voice. We use Foster’s diagnosis as a tool to explain him to the world at large. It’s hard for people to understand that Foster doesn’t mean to be rude when he doesn’t respond … it sure looks rude!

My husband and I realize that this is not only a journey for Foster, it’s a journey for us as parents and for our family as a whole.

As a mother, I am intimately familiar with autism. As Freshlife’s director of education and the editor of this magazine, I know that the challenge of autism reaches far beyond the confines of my family. The number of children exhibiting behaviors on what is now called the “Autism Spectrum” has increased to the point that this once rare condition now is diagnosed in one out of every 150 children (For more information about how that statistic was determined, see page 6). The problem is not going away - and the educational, medical and social challenges presented by autism are enormous.

When discussing the topics we wanted to focus on this year in Options, Barb Jarmoska and I realized that autism was one we could not overlook. We also realized that we needed input and advice from some seasoned professionals who were on the cutting edge of new research and treatment. We sought, and gratefully received, that input. This edition of Options puts autism under the microscope - offering not just food for thought but help and hope for autistic children and their families. We are very grateful to the four professionals who shared their expertise with us in order that we could share it with you.

Remember to mark your calendars for Karen DeFelice’s seminar, “Enzymes for autism” at 6 p.m. Thursday, April 3 in the ballroom of the Genetti Hotel as part of the Williamsport Autism Conference. Karen’s seminar is free and open to the public, however, if you would like to attend the parent’s reception and enjoy a buffet-style meal at 5 p.m., the cost is $10 at the door. For more details on the conference, see the back page of this magazine. To register for the entire conference, visit http://conferenceandwalk.homestead.com/.