My son’s autism is a gift. I wish others saw it that way

Like many parents with an autistic kid, we’ve faced a huge battle to get my son the support he needs at school. But the emotional toll could be reduced if we had been shown support — and a little kindness.

Every child with autism is different, but parents need to be their advocate so their needs are met. Picture: iStock

Autism is a gift.

It’s taken me three years to get to the point where I can say that.

When you have a child who doesn’t fit into most people’s version of normal, you are exposed to some of the most unkind and conversely, some of the kindest people. The latter make a world of difference.

As first-time parents, we’d imagined a future for our son that was happy and relatively easy. We’d let our minds wander to the opportunities he’d have and had already started thinking about the schools he could attend.

But after six years of suspecting there was something unique about our beautiful boy, he was diagnosed with Autism Spectrum Disorder and as Twice Exceptional — a gifted child with autism. My husband and I were absolutely devastated. We grieved for the future our son no longer had.

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My son is high functioning and as often happens with this kind of autism, his intelligence masked the disability, delaying diagnosis.

He wasn’t a distressed baby but was noticeably different to others his age — more vocal, interactive and impulsive. And he was beautiful.

After years of suspecting there was something unique about our beautiful boy, he was diagnosed with Autism Spectrum Disorder and Twice Exceptional. Picture: iStock

Loud noises would terrify him. In those early days, we learnt how to read him and developed tactics to manage his emotions. We quickly learned group activities — confined environments with lots of children — weren’t for him. He is incredibly social and extremely engaging, but we learned certain situations were overwhelming and caused great distress. We became aware that starting school would come with added difficulties.

We just didn’t realise how hard it would be to get the support we needed from the school.

In the school playground, a largely unstructured environment, he couldn’t regulate his emotions. He would get overwhelmed and lash out, engaging in behaviours that would put himself and other children at risk.

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I attempted to work with the principal on a solution but her response was that he would just have to learn to cope in the playground, all children do.

I offered to pay for a teaching assistant to be with him or for myself to pick him up during play time but was denied the opportunity to support him. The school principal wouldn’t budge. There were other children with autism in the school who didn’t behave like this, so why should he be an exception?

But to know a person with autism is not to know autism as there is so much variance. It was shocking for me to realise how far schools still had to go in understanding this.

This was just the beginning of what became an emotionally and financially draining period. I had to stop working to deal with the intensely overwrought child we now had, and to be available to collect him from school when chaos occurred. I was at a loss to understand why the requests for simple provisions couldn’t be made. A time table of the day, a working clock on the wall, advance notice of changes to the school day would have gone such a long way to managing his emotions.

I was told he couldn’t go on a school excursion because support staff or parents weren’t to attend. At school assembly, I witnessed a teacher screaming at him — one of the worst things you can do to a child with sensory issues — for calling out when a brass bell was being rung incessantly three metres from him. He had his hands over his ears and was cowering, and became so distressed afterwards he slept in our bed for the next year and a half.

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The school didn’t want to deal with us or our son. They came to see me as an irritant, as an overbearing parent.

We were told by representative from the Department of Education who has extensive experience working with autistic children that our beautiful, kind, caring son was “the wrong kind of not normal” for this school. She said that if it was her child, she’d get him out because they “just don’t care”. It was horrific.

We were essentially forced out of the school.

The playground at school was a challenging environment for my son. Picture: iStock

He started to attend a school much further away, joining a class for children with autism.

My experience working as a schoolteacher with kids who had significant emotional issues told me that he didn’t belong there. He’s a super intelligent child, he needed to be around neurotypical children. Not only children with autism. He’s incredibly social and he needed to have the opportunity to make friends and to observe children engaging in neurotypical behaviour.

He was there for 18 months. He developed extreme anxiety because his needs weren’t being met. It took consistent fighting and advocating for my son to finally get him enrolled back at the local school. We now have a lot of support from the Department of Education and a wonderful advocate at the department who himself has a child with ASD — he gets it.

Our son now has a lovely, positive teacher who is willing to listen to advice that’s given to her and an assistant principal who supports the teacher and our son.

We finally feel as though we don’t have to fight for our son every single day. I can breathe again. We pay a psychologist to go into the school every week; it’s a significant cost but thankfully we have NDIS funding that helps.

Getting our son back into his local school, with better support, means our family no longer feels as though we have to fight for him every day. Picture: iStock

For other parents of children with autism, don’t allow yourselves to feel judged because of your child’s behaviour. Parents have to advocate, that’s their right. Be proud, and never embarrassed that you have a child who is “different” to other children.

I’ve come to learn my son’s differences are gifts. His intense interest in different subjects such as beekeeping and cooking have given us new and wonderful experiences. We were shown incredible kindness from star chef Peter Gilmore at his Bennelong restaurant who invited my son into the kitchen to discuss dessert construction.

My son’s ability to problem solve daily blows my mind and the way he sees the world challenges me and others around to break out of their programmed views.

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He is fabulous, perfect and I couldn’t love him more.

We’ve had an unbelievably emotional journey and it’s taken a big toll on our family but thankfully I have a kind husband so we’ve managed to get through it. But it’s so important that schools, which are at the frontline, have a better understanding of the impact of having a child diagnosed with having a lifelong neurological disability. It’s my hope that schools will take that on board; and show kindness, compassion and empathy.

Because if my eight-year-old says it’s a gift to have autism, who is anyone else to tell him otherwise?

*Name withheld to protect child’s identity.

As told to Vanessa Croll.

April 2 is World Autism Awareness Day. For more information, visit autismawareness.com.au

Originally published as My son’s autism is a gift. I wish others saw it that way