Monday, February 21, 2011

Asperger's Syndrome is Real, Even When It's Hard to See

Christina Goodney Bailey

My son was diagnosed with Asperger’s syndrome when he was four. The first time someone suggested that Sam might have autism was just after his second birthday. Between those two milestones, we saw two pediatricians, a developmental pediatrician, and a speech pathologist, with inconclusive results.

For two years, my husband and I rode a seesaw of emotions, playing “Does He or Doesn’t He Have Autism.” When Sam spontaneously shared his blueberries with a playmate, we breathed easier. When he spun a rattle repeatedly, we worried.  When Sam imitated me sweeping, I called my husband triumphantly.  When he had a meltdown on the playground after another child attempted to interact with him, I left quickly and did not mention the incident to anyone.

We combed the Internet, reading countless checklists designed to alert parents to behaviors that might point to autism.  We were confused, as our son seemed to possess some “red flag” behaviors, as well as behaviors that contraindicated autism:
  • Does he spin the wheels of toy cars? Yes, but then he flips them over and plays with them “appropriately.”
  • Does he respond to his name? If he feels like it.
  • Can he follow three-step directions? He can, although he won’t if he’s in the middle of something else.
  • Will he point to something he wants? Yes. Does he wave hello? Not usually.
  • Does he make eye contact? Yes, with people he knows.
We pored over the M-CHAT as if it were scripture, trying to divine its meaning. Its Yes/No structure drove me crazy. We needed a third option.

I found the concept of imaginative play particularly confusing. According to the online literature, autistic kids are limited in their imaginative play. Sam was not, at least when playing by himself or with his parents. In addition to engaging in typical pretend games like going grocery shopping or playing with a dollhouse, Sam went through a phase of pretending to be a number.  This game was difficult for us to categorize.

When he was about three-and-a-half, Sam decided that he was the number eight. This may have been inspired by his favorite CD, They Might Be Giants’ Here Come the 123’s, in which numbers are personified. Or maybe it was just his love of numbers, which is deep and abiding. In any case, my son was the Eight. I was the Ten. His baby brother was the Six. Sam’s father, to his chagrin, was dubbed the Zero. Grandparents and close family friends were given numbers, too. The numbers we were assigned did not vary over time.

Sam liked to have me snuggle with him and whisper, “Here’s my little Eight.” He referred to himself in the third person, saying my favorite phrase, “The Eight loves the Ten.” Sam was even passive aggressive with his pretending: When I walked into a room holding his newborn brother, who had taken up near-permanent residence in my arms, he sighed, “Here comes the 16.”

When I was three, I pretended I was a rabbit. I spent hours building rabbit dens out of sofa cushions and hopping through the vegetable garden. My mother told me later that she was worried about my grasp on reality. For me, though, the number game was a talisman against news I did not want, a shield against the diagnosis I was afraid of hearing.  On the other hand, it wasn’t exactly typical behavior.

When I asked Sam what he wanted to be for Halloween, he chose to be the Eight. My husband had number t-shirts made for the whole family. We joked that nobody else would have costumes like ours. I wondered if Sam would notice the difference between his shirt and the Darth Vaders or Disney Princesses combing the neighborhood.  We began walking from house to house and my son spotted a boy ahead of us dressed as a football player. “Look,” he said excitedly. “He’s a number 17!” We never told Sam that his costume choice was unusual.  Whether it was autism or eccentricity, there would be plenty of future occasions when someone would point out Sam’s differences.

It wasn’t until I read Tony Attwood’s excellent book, The Complete Guide to Asperger's Syndrome, that I understood the complexity of the syndrome and how it interacts with individual personality in a myriad of ways. It described ways in which Asperger’s kids can incorporate their areas of interest into imaginative games. It helped me realize why the black-and-white answers on the autism checklists couldn’t begin to describe my son -- or anyone -- fully.

For two years, my husband and I set up false dichotomies: Is our son an introvert or autistic? Is he hyperlexic or an early reader? Is he gifted or special needs?  I’ve come to realize that he could be all of those things simultaneously.

By the time Sam was four, his preschool teacher was really concerned. He was sent home three times in one month for tantrums that wouldn’t resolve. His teacher reported that Sam protested every transition and cried every time there was a minor change in the schedule. She also told us gently, “He hasn’t bonded with any of the other kids. That’s unusual.” It was time for us to resolve the question of Sam’s behavior, which led us to an Asperger’s syndrome diagnosis by a neurologist and an evaluation through our school district.

The evaluation highlighted the gap between Sam’s cognitive and emotional maturity. Sam is at his best when playing one-on-one with an adult and he treated the academic sections of the test like a game, sailing through.  As he moved onto physical tasks, which were harder for him, Sam’s anxiety spiked. When he was asked to use scissors or catch a ball, he began to balk and cry. More painful to see were the questionnaires his teachers filled out, detailing a lack of interaction with his classmates. In the end, Sam qualified for an IEP under the category “autistic-like.”

Despite my resistance to “labeling” him, the diagnosis has been a blessing. It has given us access to speech therapy. It has provided his preschool teachers a framework for understanding his quirks, as well as a dose of patience for his more challenging behaviors.

Had I understood Asperger’s syndrome two years ago, I would have been less frustrated with potty training, which has dragged on for years. I read a dozen books on the subject, and pored over countless postings on online parent forums, looking for a magic clue to make it work. I kept asking, “Why is this so much harder than it is supposed to be?"

It took us three tries to successfully transition from pull-ups to underwear. Once, during a failed underwear attempt, I spent days cleaning up pee puddles, trying to maintain my composure. Finally, Sam had the seventh accident of the day, and I lost it. I put my face close to his, and hissed, “That is totally bad.” He touched the angry wrinkles on my forehead and burst into tears. I did too, from shame and frustration.

If Sam had been born a generation ago -- before Asperger’s syndrome was a diagnosis in this country, he probably would have fallen through the cracks. Without permission to recognize less intense forms of autism, we would have remained mired in confusion, frustration, and shame. My heart hurts when I imagine him trying to navigate public school unsupported, with no accommodations or empathy on the part of his teachers or classmates.

Fortunately, Sam was born in 2006. We have the opportunity to move forward with an understanding of his gifts and challenges. He is able to function in a mainstream preschool classroom with several simple, yet important accommodations. This speaks to the value of the Asperger’s syndrome diagnosis in helping children, rather than the idea that it is make-believe, even for high functioning children who may have “passed” and failed a generation ago. While Sam will continue to have challenges intrinsic to Asperger’s syndrome, we will work to minimize unnecessary pain. I hope that he will eventually be able to take his place in the world with confidence, becoming who he is meant to be.