She was tall, pretty, and smart. I liked her instantly, wanted to stand next to her and absorb some of her goodness. Following two tedious months of testing and interviews, the Psychologist said these words very carefully: “....does meet the criteria for Asperger's Disorder”. I remember feeling numb, speechless, frozen. I didn't flinch; but I did know enough to expect it by this point in the assessment. I had to force myself to blink, robotically. I held it together in her office, but nothing could prepare me for how I felt in the minutes, hours and days following the diagnosis. I felt a profound sadness. Heavy, frozen, sad. Even my lips were numb. Especially my lips were numb. I couldn't speak. I could barely walk, and it was an effort to breathe. My heart and lungs felt crushed, in a vice. My husband and I drove home in silence, retreated to our bedroom, and held each other. Not a word was shared. How could words be uttered? I had nothing to say. I couldn't even think. I stayed like that for 2 hours, staring at the wall. I wanted to stay like that for days, but I had to pick my daughter up from school. And, the next day, I had an all-day interview for graduate school entry into a counselling program. As if nothing had changed. I felt suspended in mid-air, watching life move forward.

In the following days, I found myself vascillating between numbness and despair; frozen cognition and racing thoughts. Pervasive Developmental Disorder. To a student of Developmental Psychology, a label akin to Death. Asperger's Disorder. Autism? Why didn't we notice it sooner? Why didn't anyone see it? Because, here's the kicker, the irony of it all: I have a doctorate in Developmental Psychology. My dissertation examined children's cognitive and linguistic abilities: Theory of Mind, or perspective taking. One of the core deficits in children with Pervasive Developmental Disorders is a lack of Theory of Mind. Much pivotal research on understanding the minds of children with autism comes from the field of Theory of Mind development. One of my dearest friends is a Clinical Psychologist. Many others in my life have similar titles beside their names. None of us saw anything but a beautiful, bright, quirky little individual with a vivid imagination, whom we adored. I championed and even bragged about her individuality. Like most parents, we saw what we wanted to see in our baby girl. We were all blindsided.

I recently spent hours watching old videos of her. I can count on one hand how many times she made eye contact with us, and how many times she smiled. She was serious, aloof, very interested in, and busy with, her tasks Another nail in the coffin. How did we not see? I actually remember thinking: “She's so clever, she's got better things to look at than me; she's so engaged in her world!” Watching the videos, my heart cushioned blow after blow. The clip that I found especially heart-wrenching showed my husband, daughter and I deeply involved in a chase and giggling game. At least, that's what I thought. The objective video, tripoded at the end of the room, showed that as my husband and I withdrew from the game, my daughter continued the same behaviour, independant of us. She wasn't engaged at all. She didn't flinch when we withdrew, because she didn't notice. She did not notice. And, neither did I.

People want to be supportive. “Aspergers? That doesn't sound right”. “Ah, well, I always knew there was something”. “Don't feel hopeless, I'm sure she'll lead a full life”. The truth is, there are no words. Nothing sounds right. It all sounds very, very wrong. Hold my hand, listen to me. That's what I need.

The essence of my grief lies in connection. If life is about connecting, and the core of PDD is an inability to connect, what does that say about the quality of her life? Will she always be lonely, or will she never notice? Which is sadder? Both sound very, very wrong.

I don't know how or if I should tell people about her diagnosis. We haven't even told her. People we do tell say: “she doesn't look like she has Aspergers”. It's an exceedingly complex disorder. It just isn't what we thought it was, particularly in girls (boys outnumber girls diagnosed with PDD, about 3 to 1). People don't know what it looks like because nobody wants to say, “this is what it looks like”. People hear the word “Aspergers”, or “Autism”, and they have a preconceived notion of what those words mean; Rainman, head-banging, weird, aloof, disconnected. Sometimes those things are true, and sometimes they are not. If you've met one person with a PDD, you've met one person with a PDD.

I am certain of only two things:

One: this is a marathon, not a sprint, and I need to tie up my running shoes and put one foot in front of the other. I wonder how if feels to run a marathon with no training?

Two: I adore my daughter and will do everything I can to enhance her life in meaningful and helpful ways. I will even enter a marathon, blindfolded.