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What it's like to parent an autistic child, when you are autistic yourself.

Vic Gov
Thanks to our brand partner, Vic Gov

Melbourne jewellery maker Sarah Munnings was recently diagnosed with autism. At the same time her son, Scott, 10 was, too.

Being diagnosed with the lifelong neurological condition is something Sarah wasn’t expecting, but which in many ways made total sense.

“Until the age of 37, I wandered around believing that everyone else was the same as me, and being really confused about some things in life that were hard,” Sarah, 40, tells Mamamia.

“I could not understand why after a long day at work I could find myself knocking over displays of cans in the supermarket, or why everyone else seemed to be able to mingle at networking events without the sick discomfort I felt.”

Sarah says she could always tell there was something different between Scott and his eight-year-old brother Joseph, who is neurotypical.

“Scott was such a happy baby, although we spent long nights walking the floors to settle him and help him sleep. He would cry for hours, had a lactose intolerance and would only sleep with motion,” she recalls.

“It would take 10 years and an MRI to find out that he does not naturally produce Melatonin that is the body’s natural way to induce healthy sleep patterns.”

The family moved from London to Australia when Scott was 18 months old, and it was here that Sarah began to recognise certain traits in her eldest son.

“I knew that Scott could not be forced to do anything, and needed support to transition between tasks,” she shares.  “It all seemed normal to me – I understood the reticence to change, not wanting to be forced, the sensory overload resulting from too much light   and sound, how spending time with people would mean that I needed to spend time alone.”

sarah munnings
Sarah Munnings with her family. Image: Supplied.
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Even though she saw so much of herself in Scott, Sarah didn’t expect that going through the process to diagnose her son would also reveal her own autism. But she is so glad it did.

“I never imagined that we would come out with a diagnosis of autism. That the process would be one of grief and discovery - and that I would learn so much about myself,” she says.

“Scott seemed normal and rational to me, as I was experiencing the world through the same lens. As we progressed through the endless tests and sessions I kept reflecting on how many traits we shared.

“But I will never forget receiving the official diagnosis for Scott. Crying and worrying about what this would mean for him.”

Even though Sarah felt alone in that moment of discovery, she and Scott definitely are not.

According to the Australian Bureau of Statistics, in 2018 there were 205,200 Australians with an autism diagnosis, 99,300 of whom being children. However, the true prevalence of autism in Australia is likely to be much higher given the fact many adults remain undiagnosed.

Research from Amaze, the peak body for autistic people and their supporters in Victoria, also shows that more than half of autistic Australians and their families experience significant social isolation, with a huge 40 per cent admitting they can be reluctant to leave their homes due to lack of autism-friendly environments and fear of  how they’ll be treated by others.

With 85 per cent of Australians knowing someone with autism, and only 29 per cent knowing how to support an autistic person, we need change.

The size of, and challenges faced by, the Australian autistic community are the reasons why Amaze and the Victorian State Government have launched Change Your Reactions, an Australian first education campaign that shows examples of how the community can better support autistic people in everyday interactions.

Here is one such example (post continues after video):

The scenario in this video is one that Sarah understands all too well.

“As a mother, autism means that some of the things that would seem to be simple are more complicated,” Sarah explains. “For example, getting ready for school; Scott and I both have a chart we use to remember what we need to be packing in the school bag. I still have visual reminders [of] what to pack for Scott.

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“The same things that drain Scott, drain me. A trip to the supermarket with all the stimulation, and expectation of how you should act, dealing with a child who wants to leave right now - and wanting to myself - but knowing that the pantry needs filling all the same. None of that is easy.”

Balancing her sons’ different needs is also something Sarah has to be mindful of.

“Joseph is neurotypical, which has challenges as there are things that he wants to do that would send Scott into a meltdown. This means that Joseph sometimes misses out, sometimes Scott comes along with accommodations such as ear defenders and rest breaks,” Sarah tells.

“Then there are some things we all miss out on, like fireworks and festivals.”

But for Sarah, the hardest part of parenting with autism is the social stigma resulting from a lack of community understanding.

“It is lonely and isolating,” she shares. “There are parts of my life that I can’t begin to explain; the emotional and physical strain of a day running errands  - lots of interactions with small talk. Writing and rewriting emails as I dive straight into a topic and forget the pleasantries, the challenges of being intelligent and capable but also being unable to make phone calls to arrange appointments or deal with utility companies.”

And so, a campaign like Change Your Reactions can help go a long way to improving the way others interact with Sarah and Scott in their daily lives.

“I would love to see our neurological type as indifferent as our blood type,” Sarah says. “That it is different, not less - that it simply means that our brains are wired better for some things than others.

“I want to see true inclusion - where each person is treated in the way they need - with compassion and understanding.

“Every education campaign makes it easier for us to step out of the shadows into the world and keep trying.”

Learn more about how you can change your reactions and pledge to support autistic people and their families in the community at changeyourreactions.com and amaze.org.au.

Feature images: Supplied.

Vic Gov

Autism is a lifelong neurodevelopmental condition with no known cause. One in every 100 Australians are autistic. It's important to know the facts about autism and educate yourself on ways you can support autistic people in the community, because even small changes to the way we behave and react can make a big difference to an autistic person.

Learn more about how you can change your reactions and pledge to support autistic people and their families in the community here.

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