“Our life on Planet ‘AWEtism’ has its challenges. But, that’s no different to any other individual or family. We have our own ‘normal’. It may be unique in a lot of ways, but it’s ours to do with as we see fit. Our strengths, our achievements, our positives: they by far outweigh our hard times.” Kristie Murden
Gus Murden was just 18 months old when his mum, Kristie, and dad, Paul, started noticing little quirks in his behaviour. He had already learned the alphabet and gotten into the habit of spelling out street signs as they walked past. Gus is the second of their three little ‘amazing humans’ (as Kristie calls them), so Kristie and Paul knew from experience this was unusual.
When Gus started Kindergarten, aged three, Kristie spoke with the teacher about her hunch that Gus may have autism. Six weeks later, a specialist came to the school and gave an assessment confirming Kristie’s impressions. Soon after, Kristie and Paul contacted a specialist clinic. Gus was diagnosed with Autism Spectrum Disorder (ASD) on the 4th of June 2012, a month after his fourth birthday.
“I know that a lot of families feel a sense of loss after their diagnosis. That they’ve ‘lost’ the child they thought they had. This couldn’t have been further from our truth, and I’ve always felt so grateful for that. I think maybe because we’d been seeing these traits since Gusy was 18 months old, and we were the ones who had sought the diagnosis. He was the same kid we’d always had.”
Every parent’s reaction to the diagnosis of autism is different. For some, it’s a relief, while others experience anxiety or sadness. For Kristie and Paul, it was important to stay positive.
The next big choice they had to face was how to tell Gus about his diagnosis.
“We told Gus on the drive home from the clinic that day that he has autism. We also told Max & Rosie (his siblings), although they were too young to comprehend what that meant back then. It’s a very personal choice, and each family needs to make it for themselves. We felt that if we kept it from him, that we would be saying there was something wrong, and there is nothing wrong with anything that is Gus. He has blonde hair, he has blue eyes, and he has autism. It’s just a part of his genetic make up.”
Every child’s experience of autism is different, depending on their type of condition and how severe it is. Some children on the spectrum experience sensitivity to light, sound, touch or movement. Some may experience difficulties in socialising or communication, whereas some may seek out touch or contact.
For Kristie and Paul, their journey has been about learning what works for Gus, and for their family as a ‘team’.
“If you’ve met one person with Autism, you’ve met one person with Autism. I’m a Gus expert, but that by no means makes me know anything about the next Autistic person. There is no one size fits all approach. He adores his family… he loves playing on his iPad, jumping on the trampoline, swimming in our pool. He is a lot of fun, and very social, but he does tend to dominate the subject of his interactions. Gus’s biggest challenge is definitely sensory related. He is interesting, and he is interested. But, throw him somewhere where it’s too noisy, too bright, too much movement, too hot: that knocks him sideways. His usual reaction is to retreat and get away from the sensory overload.”
For many parents, minimising the stress their child experiences means constant learning and adjustment. Kristie and Paul have developed their own creative strategies to help Gus relax when he’s feeling overwhelmed.
“We take an iPad with us wherever we go. Usually, we also take headphones, and a little stash of Blutac. Gusy likes to roll this between his fingers when he’s in unfamiliar territory. Blutac is predictable and always the same.
Going somewhere new is a challenge. That’s where Google becomes our best friend! Before our trip to California last year, we Googled a lot of the places we were going, so that Gusy was prepared. This worked really well, and the trip was a success.
It didn’t work as well for us on a previous holiday to Bali. We couldn’t Google the heat, the humidity, and the culture of people being so ‘in your face’. Within minutes of getting off the plane, he was in meltdown.”
The autism ‘meltdown’ that Kristie refers to is different to the usual tantrums that children experience.
It’s an uncontrollable reaction to sensory overload in the nervous system, and it requires a different approach to the usual soothing techniques. For example, when distressed, the child may want space instead of hugs. During meltdowns, parents often report feeling overwhelmed, helpless, or exhausted. The Autism Awareness Centre suggests a range of strategies to help parents deal with meltdowns and manage their own ‘carer fatigue.’
“In a meltdown, every outside attempt at help is seen as an attack. This was one of those sad moments, when your child is in a frantic place, and you cannot help them in a way that you want to. You have to help in a way that they need, which is just to step back.”
For Gus and his family, his school has been incredibly supportive.
“Gus’s school do treat him a little differently. But he is different. There are concessions. We have a fabulous relationship with his school, and together we’ve decided that there are things where they’ll adapt to him, and vice versa. His school has a big focus on all of their student’s mental well-being. Gus’s diagnosis has been a positive there. The teachers understand him, his peers understand him, and they all accept him as the quirky kid with an interesting story to tell.”
However, this is unfortunately not always the case. Since 2015, independent research and two separate Senate enquiries have found concerning cases of exclusion of children on the Autism Spectrum in schools across Australia.
The enquiries suggest that this is in large part due to a lack of adequate training and understanding. For this reason, Torrens University has recently introduced a suite of cutting-edge courses for educators, carers and parents, focused on raising autism awareness. The Graduate Certificate of Education (Autism) is specifically designed to give educators tools they need to deeply understand, and respond to, this condition.
Kristie hopes that people will learn more about autism so that we can get to know Gus for who he is: an ‘amazing human’, who happens to be on the spectrum.
“I think our biggest challenge, hands down, is a lack of understanding. When I meet someone who says, ‘I have no understanding of autism,’ and then proceed to ask a question, I want to hug them! Life for Gus is normal. It’s normal for him to find attending Maxy’s basketball games hard: the echoes in the stadium… the siren at the end of the halves. It’s also normal for him that he has this incredible memory.
It blows me away that this human who I first met when I was 31 years old has been my life’s biggest teacher. He’s taught me just how fierce my spirit is when I see him needing help. With Gus, I’ve experienced some of my saddest moments… But mostly he amazes me.
In schools and in society, we need to be willing to throw away the boxes that we expect people to fit into. We need to be willing to react to all people. We need to throw away preconceived ideas of ‘should’. Learn, understand, and simply be kind.”
– Kristie Murden
Kristie, Gus, Paul, Rosie and Max are all living happily in their home in the Macedon Ranges, along with Benson, the German shepherd, and Mable. Gus is now nine years old now, and doing well.
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