1. Is your son developmentally delayed? Nope, but I’m pretty sure he’s spectrummy.
2. Are you an Aspie? No, I’m just a spectrummy mummy.
Prior to last year, I’d only met one person diagnosed with autism. He was a teenager, non-verbal and struggling to process all the sensory input of the chaotic world around him. As a friend of his sister, a couple of years younger than him, all I saw was the faraway look in his eyes, the panic when we entered the room. He would cover his ears, close his eyes and rock and scream in the corner. His sister never mentioned his disability, so neither did I. I feel sad about that now. That was my first introduction to classic, or Kanner’s autism.
A few years ago I read “The Curious Incident of the Dog in the Night-Time” by Mark Haddon, and I got my first insight into Asperger’s Syndrome. Now, I don’t consider myself that much of a literal person, but bear with me as I tell you that this became my exact understanding of AS. The main character hated to be touched, so that was my exact interpretation- people with AS always hate to be touched and avoid human contact. And they hate loud noises and cover their ears all the time. Right. Or you know, wrong- as I turned out to be.
How we came to view Pudding as being on the autism spectrum is a whole other story for another time. Suffice to say, just a year ago I didn’t know there was a spectrum. My take on autism was made up of the above, with the usual dash of Rain Man thrown in. Please. So, if like I was back then you are unfamiliar with the notion of an autism spectrum, allow me to make it a little clearer. Sorry if you already know all this. Some of us are still catching up, okay?
Okay. So we have Kanner’s or classic autism at one ‘end’ and Asperger’s Syndrome at the other, right? Well, not really. It isn’t so much a sliding scale (though I did think this for a while). Both have impairments with social interaction, communication and pretend play, as do people with other diagnoses on the autism spectrum, such as Rett’s Syndrome, Childhood Disintegrative Disorder, and PDD-NOS (Pervasive Development Disorder Not Otherwise Specified). There are other things in common, such as sensory processing difficulties, difficulty making eye contact, repetitive movements, difficulties with transitions, fixations or special interests. There are terms used like high and low-functioning, but the more you discover about autism, the less useful they appear to be. Even amongst each sub-type of autism, there is such diversity, such variances in strengths and weaknesses. When it comes to young children, this gets even more messy. We now know that the brain continues to develop and make new connections for far longer than was previously believed. The non-verbal child at 3 may receive an entirely different diagnosis just a couple of years later. Some interventions even claim to spur development in adults. So all the diagnostic criteria starts getting less useful, and ‘spectrummy’ just seems to fit.
So while a year ago I had little experience or knowledge of the autism spectrum, these days it is clearer to me. I am a spectrummy mummy. One time we were at the playground and Pudding was on her favourite swing. I saw the little girl in the next swing had a familiar faraway gaze in her eyes, and a tell-tale flap with her arms. Her daddy was crouched in front of her using the sign for ‘more’. I asked him how old she was. He didn’t turn to look at me, but said she was 3. I told him mine was almost the same age (at the time). Then he glanced over at me for just a second before his eyes were back on his girl. “She isn’t typically developing, she has autism.” It was supposed to keep me quiet. It didn’t. I told him Pudding was also on the spectrum. Then we chatted. His daughter had PDD-NOS. She wasn’t talking at that time, but they had started to learn sign language and now she was using gestures. We talked about school. All the time though, he was watching his daughter, checking she was okay, waiting for her to need him. That was the first time I understood my second meaning of spectrummy. All around us at that playground were other parents chatting away, sharing anecdotes about their kids, drinking coffee, being social. The spectrummy parents weren’t. There was a reason why that father wouldn’t look at me, was avoiding conversation and was world-weary of the inevitable comparison between his child and another of the same age.
When a child is diagnosed, a spectrummy parent is born. There is no more sitting on the sidelines watching your kid play. You are right there, encouraging it, sharing, joining in, facilitating. What is the point of hearing another parent talk about their child’s development? Yours is on a different schedule, running an alternative race. How can you make small-talk? What if the kid needs me? What if I miss an opportunity to engage? To help them interact with another child? What if I miss the time when those beautiful eyes turn right on me and smile?
Funny how even the most social of us can manage to tune the rest of the world out, to avoid eye contact, to stop communicating with anyone less important. Every spectrummy child has a spectrummy parent. I wouldn’t want to be anything but a spectrummy mummy.