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I refuse to let Autism define me
“Emily looks like any other child – that’s the ‘problem’ with Autism I suppose. There’s a sense that some people play on a diagnosis, but in reality there’s a whole lot of ignorance about it out there.”
West Pennant Hills parents, Louise and Mark Fogarty, know the value of early intervention, but in the midst of alarming headlines and spiking statistics, it’s clear that Autism has become something of a hot button for the NDIS.
Louise acknowledges that a lot of people know little more about the disorder than “what they’ve seen watching Rain Man”, yet suspect rorting of the system. The ‘invisibility’ of Autism and implied judgment, she says, can be just one more burden to bear.
“For my husband and I, Emily is our main priority and we love her dearly. But of course it puts a huge strain on your relationship,” Louise said.
“Structure is critical for Emily, which means that any changes cause additional and unnecessary anxiety. Everything has to be on the dot – 6pm dinner and that’s it. No room for delays or she’ll struggle. As I get older my patience is definitely wearing thin. While she’s wonderful with us, she can lose her cool when things don’t go her way, and it’s exhausting.
“We’ve had a lot of support throughout Emily’s life, but God we had to fight for it. Physio, speech therapy and a lot of occupational therapy – I don’t know where we’d be without it all.
“Now Emily is 26, in full-time supported employment and she attends numeracy and literacy classes through Endeavour Foundation. She’s doing pretty well for herself. In hindsight, I wouldn’t have worried so much – but back then I had no guarantees that she’d get the support that she needed. Because of those interventions, she’s come a long way.”
The Fogarty family’s battle is not unfamiliar. Though 20 years have passed since Emily was diagnosed, Autism remains one of ‘those’ conditions that seems to draw comment, speculation and even judgment.
References in recent months to ‘surging’ numbers and ‘blown out’ budgets have given way to insidious mentions of ‘mild symptoms’ and inferences of over-diagnosing, leaving the ground fertile for debates over a hierarchy of need. The very antithesis of all that the NDIS stands for.
Let’s assume instead that that our clinical understanding is now greater and that – with slowly growing comprehension – individuals and families feel more informed and empowered to reach out. Regardless of the reasoning, what gets lost in the middle is that need is need. Our challenges in life, of whatever nature, are personal – never truly comparable. To put it bluntly; your broken leg is no less painful because your neighbour’s house burned down, and your need for support and therapeutic intervention is no less because of the multitude of challenges faced by others.
Ultimately, tackling Autism through effective early intervention makes financial sense, because without it the lifetime cost of support services increases exponentially. But, more importantly, we’re talking about people here. Just people. Not numbers.
Individualised supports, in the case of an Autism diagnosis, are most effective when viewed as building blocks; foundations for an improved adult life which, tangentially, will decrease costs throughout adulthood. The next time mention is made of Autism rates exploding, remember that the numbers are people – people like Emily. People who at 5 years old were harangued by women in supermarkets for ‘meltdowns’ they couldn’t control.
As dad, Mark, says, the implementation of the National Disability Insurance Scheme at least promises a nationally consistent response to the issue.
“This is an incredibly important policy position, providing as it does a more proactive program that allows the person with a disability to take control of the sorts of services that might be needed to give them a full life. It’s a huge shift. Emily’s understanding of the NDIS is growing – she realises that it offers an opportunity to, with support, move along the pathway to greater independence. She’ll no longer be an end user, but instead a decider.
“Balance will be the key for the NDIS – ensuring realistic and efficient service provision against the allocated funding. It’s an ambitious program but, properly monitored and properly managed, it should be a prudent investment.”
With the NDIS clearly committed to remedying the sad, historical funding response a new challenge emerges. Our community must now nurture and embrace the rightful role people like Emily have in our society. And the clinical and service community must ensure that they are adequately skilled to deliver the supports people with Autism rightly deserve. In our new world, this must be the minimum standard.