My journey into the spectrum

Autism: The millennial disorder

RECOGNITION AND REALISATION

I’ve always thought my son was of above average intelligence. Perhaps every mother does? From an early age he showed a keen interest in numbers, letters, geometric shapes, and patterns. I marvelled at the focus he displayed in assembling elaborate constructions of toy cars and blocks. For hours he could happily amuse himself with little intervention from me. He was a tired-overworked-single-mother’s dream child. I thought he might grow up to be an engineer.

In Los Angeles (where he grew up) without public health care and government aid, autism is not a hot-topic. Nobody had ever spoken to me about it, and I had no idea what it was. I’d seen it listed as a possible side-effect on some anti-vax sites when I was researching whether or not to get my baby immunised (after my mother urged me not to while I was still pregnant). I didn’t bother to check what it was, as I found no convincing evidence directly linking vaccination to any of the array of illnesses it was listed as the cause of. Instead I found it a compelling  argument that the practise had lowered infant mortality. It’s apparent that we are getting better at identifying and naming diseases – especially neurological diseases – due to advances in science and medicine. It stands to reason then, that it’s this increase in classification that has caused a perceived spike in illnesses, and not a fact that there are more illnesses, because before they were classified those same illnesses went unidentified. The perceived spike would therefore be coincidental.

When I moved back to Australia to return to university, one of the first classes I took was intro to writing, and one of the first genres we studied was the personal essay. I read an essay by Rachel Robertson called ‘Reaching One Thousand’. The central story is about a little boy called Ben. He loves numbers and counting, and sorting buttons into piles. I enjoyed reading the story, because Ben sounds just like my little boy. Nothing in the title or the introduction gives away what this essay is really about – at least not to me, with my limited knowledge on the subject. I feel I could have written this essay myself and simply substituted the name ‘Ben’ for ‘Jake’ (the name of my son). I’m three pages in when I see the word ‘autism’ for the first time in this story, and my pleasant feeling of identification becomes something very different.

On the next page, Robertson writes “The literature on autism describes Ben’s love of numbers as a ‘preoccupation with a stereotyped and restricted pattern of interest that is abnormal in intensity and focus’”. I’m beginning to dislike words that begin with the letter ‘A’. Words like ‘abnormal’ and ‘autism’. I thought my son might turn out to be a genius. If I had considered him abnormal, it would only have been in that he was of abnormally high intelligence.

DENIAL AND DIVERSION

I am a busy person, and I have plenty to keep me occupied. I took four units concurrently in my first semester through Open Universities Australia, just after my mother had died unexpectedly. I’m good at keeping the focus away from feelings that make me uncomfortable. I immerse myself in the detached terminology of sociology, and also travel extensively and attend any function to which I’m invited. Unfortunately, in my experience, there isn’t much can be forgotten or denied forever.

I’m staying at my brother’s in Hobart, Tasmania shortly after leaving New Zealand, where my father doesn’t seem to want or need my help. Like me, he is adept at beginning again, a master of distraction and immersion. That must be where I get it from, I suppose. It is while staying with my brother that I am confronted once more by the subject of autism.

My brother is separated, but maintains close contact with the the mother of his second child. She also has an older son from a previous relationship. His name is Ryan and he has been diagnosed with autism spectrum disorder (autism’s medical name). My son Jacob and Ryan get along extremely well despite their age gap of 6 years. Ryan introduces Jake to video games, which greatly enhances my study life. They share the same interests, draw in a similar style, and communicate in a way I haven’t seen Jake communicate with anyone else.

It isn’t long before my brother sits me down to have ‘the talk’. Have I considered that Jacob might also be autistic? (He is careful to point out that he thinks he’s on the lower end of the spectrum). He informs me there is a lot of support available for Jacob in Australia. There’s government funding available. They can help Jake when he gets to school. Maybe I should just get him checked out. Medicare will cover it. I agree I will get it checked out at some point. I know he has nothing but good intentions, and is concerned for my son’s wellbeing, but I’m not sure if I’m ready to accept that my son has a disability. I look it up all the same. Autism spectrum is classified as a neurodevelopmental disorder.

But just when I am finally giving some weight to the issue… All my assignments are due. It’s Christmas. My father visits with his new much younger Korean girlfriend (causing some tension, though not from me). And worse still, my own boyfriend leaves me after months of mounting conflict over a disagreement between him and my brother concerning his parenting style. It’s because of my son’s suspected autism. My brother, having first hand knowledge of what approach to take, and recognising the signs, uses a less confrontational approach. My boyfriend believes he has a behavioural problem which needs to be addressed with increased discipline. His father was stern. He believes a stern approach will correct Jake’s increasingly unusual behaviour. I bury my head in the bottom of a champagne glass. After all, it’s fucking Christmas.

ACCEPTANCE AND REJECTION

On New Year’s Day, after one bottle or two/too many champagnes, I discover a new depth of misery. It’s the kind of misery that makes you believe you are too old to begin again. Undeterred, I figure the best thing to do is flee the island. My soon-to-be-not-so-ex-ex-boyfriend flies in, and together we drive my beat-up 1989 Subaru all the way from Hobart, Tasmania to Airlie Beach, Queensland. I’ve been there once, and it seems like as good a place as any to start over.

It’s the beginning of January, and Northern Queensland is hot, then hotter. The car breaks down several times on the way, but eventually makes it the whole way up. We make it in time for my son to start Prep. Between my excitement at Jake’s first day of school, sipping mojito’s by the resort pool, and looking at big spacious apartments with aqua green ocean views speckled with yacht sails and distant islands, I have not a worry. When it’s time to be stressed, it’s only to stress about the assignments I haven’t had time to work on. Jake is happy at preschool, and thanks to the apps from Endless School, he is well ahead of the game at reading and spelling. It doesn’t take him long to catch up on his writing. When I do remember that bastard thing autism, I decide that we were all wrong. I’m relieved and reassured. My son just might be a genius after all, and he is definitely of above average intelligence.

I manage to finish my second semester with straight distinctions, and I even find time to finally finish unpacking our bags! I have an Easter vacation planned to Hawaii, and a week full of end of term activities to attend at school with my son. One of those activities is my first ever parent teacher night.

Immediately I know something is wrong. Jake’s teacher opens with “Is there anything that’s concerning you?” – turning the tables and leaving it to me to break the uncomfortable ice. It must be hard telling a parent there’s something wrong with their child. She asks me if I mind if she calls over another teacher, and a lady I’ve never seen before appears from inside Jake’s teacher’s office, where she was presumably stationed waiting for the signal – there after hours just for me. She is the special education teacher at my son’s school. We discuss the necessary next steps, I confess to my red flag moments, and do a good job at seeming prepared for this conversation – but when I leave I am close to tears and the ten minute walk home feels too long. I just want to be alone.

The next day is the swimming carnival. I am proud and excited watching my son, but I cry beneath my sunglasses when I think I recognise the special needs teacher helping him in the water. It isn’t her. They all look alike with their hats and sunglasses on. It’s the swimming instructor, and she helps several other kids across the pool. They’re not all strong swimmers in Prep. At the end of the day they all get a ribbon that says ‘I swam in a race’, and I feel like a bad mother. Jake is happy. He even won one round. He might not be the next Kieran Perkins, but he is a fully capable little boy who tries hard at everything he does.

‘THE AUTISTIC KID’

I’m walking across the school oval and overhear another mum say to her friend ‘That’s Jame’s mother – you know, the autistic kid’. She isn’t talking about me. There’s another autistic kid in Jake’s class. I’m sure she means nothing by it, and it is just a method of identification, but I’ve recently found out my son might be autistic, and I walk home in a strange mood. Is that how they’ll refer to my son – ‘The autistic kid’? He’s so much more than that. He’s gorgeous and talented and smart. Who cares if he spins around in circles flapping his arms sometimes, or doesn’t hear you when you speak to him. He makes the most elaborate constructions. I’m sure he’s going to be an engineer one day.

I have a meeting with the school’s resident specialist so she can send the relevant data to the paediatrician ahead of the appointment I’ve booked at the school’s suggestion. They explained to me the additional funding that’s available with a diagnosis, and they’d like some help so they can better educate my son. The GP who referred me to the paediatrician said he didn’t like to put labels on things.

James ‘the autistic kid’ seems to have his behaviour accommodated. Maybe he’s further along the spectrum than Jake, I don’t know. But I’d like to think that my non-aggressive correction of some of Jake’s behaviours is helping him to improve. One day when we went to the local lagoon as a school, the teacher sprayed water in all the kids faces while we were walking to help cool them down. James freaked out. Jake started to freak out too, but I gave him a look and he stopped. I wondered if he would be more like James if I were more accepting of his behaviour? I wondered if I was wrong or right to try to help him assimilate? I suppose these are questions for the doctor.

In her article ‘Mark Maclaine, grit – and the greatest gift for kids’ Nikki Gemmell writes “Mark Maclaine … says telling kids they’re clever is never a good idea – because it gives them the impression they don’t have to work hard”. But couldn’t the same be true in reverse? If a doctor tells my son that he is the way he is because he’s autistic, won’t that stop him from trying as hard at the things he doesn’t like to do? If the teachers let him walk around because they don’t think they should tell him to sit down, will he one day be incapable of holding a job, because he doesn’t believe he can sit down at his desk or stand still, or do whatever the job requires – because he’s autistic?

When I was his age, my teachers called me ‘space cadet’ – because I was always staring into space, looking through people and zoning out – think Walter Mitty. My niece is diagnosed with something called Absence Epilepsy. My parents never took me to a specialist, but I’m willing to bet I have it too. It’s never stopped me from doing anything I wanted to do, or from doing well in school, because I never knew anything was wrong with me. Sometimes I stare. People tell me to stop staring, so I do. Maybe some people think I’m a little odd, but that’s ok. Why do we have to keep categorising people by their differences? Aren’t we supposed to be like snowflakes, no two people exactly alike? To me it reeks of an Orwellian nightmare, where “All animals are equal, but some animals are more equal than others.”

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