Burden? Who, me?

At two years old, I was taken to a paediatrician by my mother and pronounced mentally retarded and autistic.

Art by Khanh Tran

Last year, the Sydney University Catholic society (CathSoc) displayed this question on an A-frame: “Are disabled people a burden on society?” Two jars were put out, one labelled “YES,” and one labelled “NO.” CathSoc’s defence when criticised for ableism was that it was all an innocuous exercise — a ‘spark’ to incite debate.

On the election trail this year, Scott Morrison implied all neurodivergent children are theologically aberrant. “I have been blessed,” he responded to a mother questioning why her son on the autistic spectrum had lost funding under the National Disability Insurance Scheme (NDIS). “I have two children who haven’t had to go through that,” he said while addressing her question.

I went through “that.” At two years old I had six words in my vocabulary; a child at that age normally has anywhere between two and three hundred. I knew “Mum,” “Dad,” my brother’s name, my name, “clap,” and “wave.” I was taken to a paediatrician by my mother and pronounced mentally retarded and autistic. This doctor — thinking it best to eschew sensitivity and put plainly to my mother his prognosis for my life — declared me brain dead. Fortunately for me, my mother thought I demonstrated an intelligence playing with my older brother that was modicum enough to warrant other, more charitable opinions. She also loved me. The fourth paediatrician we saw recommended the then-nascent Applied Behavioural Analysis (ABA) therapy. It was ostensibly a benign form of abuse, he cautioned my mother. “I don’t give a fuck,” she said, “I just want him to talk.” I started ABA therapy just shy of my third birthday.  

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‘Sit down.’

‘Mum?’

‘Sit down.’

Where is mum? 

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I would cling to mum in the in-between. I didn’t want to go in there. She’d peel my arms from her and say to me… what… say to me what?

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‘Pig.’

What?

‘Point to the card Pig.’

What?

***

One day when I wasn’t trapped in a room screaming my head off, strangers gesticulating and garbling, my mother was wheeling me in my pram down the sidewalk of a hill. She saw a truck coming up the road and thought: If I relax my hands, just enough. She was horrified, and confessed that the thought passed her mind to another mother with an autistic son at a support group. “You should do it when the bus is going down the hill — the bus will hit him with more impact… I’ve had similar thoughts,” the other mother replied.

*** 

I did ABA therapy six hours a day, six days a week, for two years. Recently, it has garnered criticism from people who have actually gone through it, and rightly so. Preventing kids from stimming, only one problematic aspect of the therapy, entrenches the notion in them that they should repress their natural behaviour to try and pass as neurotypical. I was lucky in that I did not behave in what was considered an untoward manner, and so was spared in this respect. 

But ABA therapy can help through the use of pictures representing every noun, verb, adjective, and preposition, and by me pointing to the ones being spoken of. For example: “Bearded Gandalf waving his staff in Mordor” (my mum tried to make it fun). I learnt words…very slowly. It took me six weeks at the outset of the therapy to learn one word.

With the words I’ve written so far, I hope I have cast aspersions upon the proclamation that my brain is a torpid blob incapable of cognition. Autism manifests differently in different people. In my case, I have both an auditory and visual processing disorder, both mitigated now through a great deal of effort.

That effort was exerted not only by me but also by my mother. Indeed, mostly by my mother. I asked her about our travails. “You became my life,” she said to me, lovingly, but laced with an undercurrent of exasperation. I became her life. 

Upon me beginning ABA therapy, she quit her job to take care of me full-time, a setback for her career she has never recovered from (I was extremely fortunate in that my father could financially support our family alone). She didn’t leave the house for six months except to get groceries — a lockdown of sorts. The minutiae of our home became opportunities for her to reinforce the words I was learning: “Would you like the round blue cup in the big pantry?”

After school and on the weekends up until middle school, she would drive me across Sydney to the Lindfield Speech Pathology and Learning Centre where I would do the Fast ForWord program, listening to sheep ‘baaaa’ and cows ‘mooo’ in various tones, in the hope that doing so would help me process auditory information more effectively (that I can speak somewhat intelligibly goes some way towards speaking for its efficacy).

These were interventions. My mother directed me to therapies under the belief that the impairments I had needed fixing. It’s an interpretation of disability that can be problematic.

As a young teenager, my mother encouraged me to see an esteemed gastroenterologist who advocated faecal microbiota transplants for autism — Honi reporter Katarina Butler wrote about the procedure in an article, detailing how it treats actual pathologies like cancerous tumours. I humoured my mum by attending the consultation. Sat in his office, my mother described how I had been non-verbal and diagnosed with autism — I can recite how she did so, having heard her do so, so many times. I looked at the university degrees that adorned the walls and politely smiled at him when he glanced at me.

I then spoke.

“Extraordinary,” he stammered incredulously.

I spoke some more.

“Listen to this guy!” He exclaimed to my mother.

My mother walked out, and I followed her.

There’s a portrait of me as a toddler. I’m sitting cross-legged in my nappy, my head is cocked to one side, looking straight at the camera. Sometimes I look at me looking at myself curiously. When I asked my mother if she’d do it all again, she only rolled her eyes.