Caring for my autistic son taught me to focus on his strengths

We don’t support autistic individuals enough, and when we do, we focus on what they can’t do.
Updated Jun 18, 2019 06:18pm

My son was born 10 years ago.

He laughed cried, hugged, kissed, crawled, sang, vomited, watched BabyTV, loved being tickled, and smelt of lemons and roses. He loved the colour red. He loved crawling under small spaces. He loved using his thumb to trace my shoulder bone.

He did not love the playground unless he was the only one there. He did not talk. He did not share. He did not chew solids. He did not play with any ‘stimulating, good-for-hand-eye-coordination’ toy we got him. He did not know what to do when I asked him to do simple things like putting a cup on the table or flipping the pages of a book.

I remember the day he got diagnosed. The diagnosis seemed like giant letters in capitals sitting next to his tiny four-year-old body.

Autism is a brain condition associated with poor social skills. It has a wide spectrum of symptoms, from obsessive behaviour to hypersensitivity to sound, light or other sensory stimulation, the severity of which ranges from mild- to life-limiting.

Related: How I stopped hoping for my autistic son to become 'normal'

The range of consequences is also wide. You will know this from the people in your life. At one end, the autism of a scientist may not be obvious; on the other, a third of autistic children do not speak.

Autism is a label that stretches across a range of diagnosis. I suppose if I were to make one generalisation it would be that the potential of far too many autistic people is lost.

Although around half of those with autism are of average intelligence or above, they do far worse than they should at school and at work. Globally, the United Nations reckons that 80 per cent of those with autism are not in the workforce.

This is a waste.

When I first got my son’s diagnosis we felt… there is no adjective to describe how we felt as parents. It was even harder for the grandparents who had never had these words in their vocabulary before then.

I had another little one on the way and took two years off to look after both of them — and so began an epic battle of wills in our household where he constantly wanted to wander off into the world in his head and we wouldn’t let him.

There was therapy to help him put his thoughts into words, and there was therapy to help him do simple things like brushing his teeth. Therapy took over our life.

Showers became an opportunity to trace letters on the steamed glass. Balloons at birthday parties became exercises in bilateral hand coordination. Straws became instruments to blow bubbles and paper across tables; mattresses and blankets an opportunity to develop spatial awareness.

We were lucky to have some input from professionals, but ultimately none of them had his trust and love like we did. Only we knew him well enough to put Thomas the Tank Engine stickers on school toilets to make them familiar enough for him to use.

Also read: How I raised my perfect child with Down Syndrome

Only we knew that the way to get him to learn to brush his teeth was to give him a brush to practise on his beloved trains. Only we knew when it was the day to push him and the day to let him be.

Over the years, I realised that we were spending all our time 'fixing' him. We weren’t paying enough attention to the things he could do better than anyone else. For me, this is the problem.

We don’t understand autistic individuals. We don’t support autistic individuals enough, and when we do support them, we focus on what they can’t do and where they need 'adjustments' without creating space to nurture and benefit from the diverse strengths they bring.

My son became obsessed with letters when he was little. His eyes gleamed with excitement as he put A, B, Cs in the right order, as his pudgy fingers traced the curve of the S and the peaks of an M — but his favourite was the letter V.

He would try and spot it everywhere: at the back of delivery vans, Volvos and Venus dry cleaners (we paid a lot in dry cleaning that year).

I used his love for letters to get him to read. He could read letters out loud before he learnt to say his name (or mine). He started reading small words at two. He started typing out words soon after. He was reading fluently at three.

Although he didn’t have the hand-eye coordination to eat yoghurt with a spoon, he could write in beautiful cursive writing at four. He scored his first hockey goal this week. Great things happen when passion and perseverance mix.

I don’t want this article to push a romanticised notion of autism. Some of you reading this article are autistic and I don’t want to minimise the many sensory, physical and emotional challenges you experience in the workplace, which we need to support by making adjustments where we can.

Up next: I thought Postpartum Depression would never happen to me; I was wrong

Some of you will be parents or carers of high-functioning autistic individuals. I know what extraordinary levels of patience, resilience and ability to survive with little sleep that requires.

Some of you will be carers of nonverbal autistic children or adults who are at the extreme end of the spectrum. I can only imagine what superhuman levels of patience are required to do that job and I strongly suspect you are extraordinary individuals.

We had no control over the diagnosis and we may never know in our lifetimes why autism affects our lives, but what we do have control over is how we approach autism.

Advice, support and information for autistic individuals, their parents and the team that works with them is so important. We need to have more and better conversations about autism in our communities.

I am often told by my son that I am an optimist and believe people are capable of doing things that they cannot. This is probably true. However, my optimism has led to a place where he has the social and verbal skills to tease me about it.

That is the power of optimism. It makes the extraordinary possible.

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