'I threw myself into helping him': Diane has been fighting for her son since he was a toddler
By Jo Abi|
Diane LaMalfa has been fighting for her child's basic rights since he was a toddler.
Leo, 10, is autistic, or to use medical terminology, he has been diagnosed with Autism Spectrum Disorder (ASD).
"I kind of knew from when he was one," Diane, 45, tells 9honey on World Autism Awareness (Acceptance) Day (April 2).
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"He wasn't really meeting his milestones," she recalls. "He walked late, he wasn't talking, he was not really lifting his head so tummy time was a struggle, [lack of] eye contact... he always seemed to be a little bit in his own world."
She took her son to see a paediatrician and by the age of three he had been diagnosed with the neurological difference.
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Diane recalls receiving her son's diagnosis, along with a long list of "recommendations" she was meant to enact on his behalf.
"They were just giving me all these documents about what to do next, you know, try and get NDIS (National Disability Insurance Scheme) money, you need to find a therapist, a speech therapist, OT (Occupational Therapist)... I just kind of shut down and kind of switched off at that moment," she says.
It took time for Diane and her husband Anthony, 47, to get their heads around organising everything their son would need to live his best life.
It didn't take long for Diane to go into "super mum" mode in terms of what she could do to help her son live his best life.
"And I threw myself into helping him, and kind of let myself go in the process because I put all my energy into him," she says.
Diane remembers contacting NDIS for the first time and feeling "so confused". He was in daycare when he was diagnosed and it wasn't an ideal environment for her neurodivergent child.
"I ended up actually employing a teacher's aide to be with him within the daycare," she says. It was an expensive choice but one that allowed her son to better engage with activities and others.
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This led them to Aspect (Autism Spectrum Australia) where Leo would eventually attend school.
They had decided against mainstream school with the support of a teacher's aide, and also decided against placing their son in a support class. She wasn't even sure if Aspect was the right environment for her son, until she attended an open day and spoke with the principal.
"And I threw myself into helping him, and kind of let myself go in the process because I put all my energy into him."
Places were limited however Leo was lucky enough to get a place in the organisation's Peakhurst campus and he then moved to an Aspect-run "satellite" class at a school located an hour away from home.
Aspect is limited by how many schools are willing to host a satellite classes, requiring many of their students to be driven via the Assisted School Travel Program (ASTP) where a driver is responsible for taking multiple students like Leo to school.
Leo's school is an hour away from home, and it was a process for Diane to ensure her son was in suitable transport for the school run.
"We've had so many issues with having too many kids in the car, kids with different behaviours... we've also had drivers who don't understand autism which I find baffling."
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For now, they have a "beautiful driver" and a support worker in the car with Leo.
High school is next on her 'To Do' list and she was very worried Leo wouldn't get a place in an Aspect-run satellite class again due to limited spots, but was recently told her son had secured a place.
Diane describes her son as "always happy, always laughing".
"Considering his communication and cognitive understanding is a little bit delayed, he just has this way of communicating with people," she says. "He has his moments where he can get upset and has a meltdown and it's solely because he doesn't understand but overall he's a very happy child."
Leo is 10 but looks older due to his height.
"And so, you know, people out in the public will go talk to him and say things and he'll just stand there and stare at them simply because he might not understand the context of the question, or the conversation or sometimes you need to really simplify the language for him to understand," she says.
"I mean, I always have my eyes on him. I will never turn my back on him in a public area because he's very trusting and doesn't understand danger."
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When Leo flaps his hands when he is happy or makes a loud noise when he is "stimming" they will sometimes draw attention in public settings.
When she tries to explain her son is autistic she is sometimes met with "complete bewilderment".
"So they don't know what I'm talking about," she says. "Others will be really supportive and go, 'Oh, I have a nephew that's autistic!"
She says her "hope for people living on the autism spectrum is that the world becomes more educated on what autism is".
"We need better understanding, a little bit of patience and more compassion."
This year Diane, Anthony and Leo will participate in Aspect's annual fundraiser, Walk For Autism.
Dr Vicki Gibbs, Head of Research at Aspect, says this year the aim of the walk is to "drive home the fact that 70 per cent of autistic people experience mental health challenges", a number that's "far too high".
"A world that isn't designed for Autistic people makes everyday life more difficult and contributes to these struggles. We need to change that," she added.
To register or support Walk for Autism visit walkforautism.org.au.
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