“If you walk into our home or Max’s classroom, you couldn’t pick him out as having autism. But then we’ve funded nearly 10 years of support – from speech and occupational therapy to psychology appointments. I can tell you now, he’d be a very different child if we hadn’t been in the position to do so.”
Adeane Tindall’s 13-year-old son, Max, was diagnosed with autism at the age of four, but it was an uphill struggle.
“We know that Max’s disability isn’t visible, but that doesn’t make it any less real. In fact, it’s tackling the issue head-on that has enabled him to achieve so much.
“When Max was a toddler and first showing signs that ‘something’ was going on, we were referred to a paediatrician. That unfortunately coincided with a lot of publicity about the massive increase in ASD (autism spectrum disorder) diagnoses, and I can vividly remember being told, ‘I am not giving you a label so that you can claim funding. Why would you do that to your child? He will be stuck with that label for the rest of his life’. I felt chastised.
“Now, looking back, I can tell you that if we hadn’t listened to our instincts and forged ahead there’s no way he’d be in a mainstream school now, coping as well as he does.”
For many people with an intellectual disability, brain injury or mental health condition, the impact of an “invisible” disability is significant. This has never been more apparent than thanks to the current, disturbing dialogue around mild symptomology and costs recently associated with ASD diagnoses.
It’s relatively clear when someone uses a hearing aid, guide dog or wheelchair, and it’s equally clear that a response – from friends, neighbours or the community – is required. The hearing aid prompts an adjustment in our communication style; the guide dog reminds us to avoid visual communication; and the wheelchair guides us away from stairs. But what if your disability can’t be seen? What if your disability impacts upon how you think or problem solve, or understand the perspective of others?
Because these processing differences are invisible, others often misjudge what is being communicated and how best to respond. Hence the struggle to achieve a diagnosis is just the beginning – then come the waiting lists, the battles for funding and, whether we like to acknowledge it or not, a lingering suspicion about the “realness” of autism.
And therein lies the real tragedy – not autism, but the widespread ignorance of what it means, and a failure to provide the necessary supports which allow people with autism to enjoy genuine equal opportunity. If this debate has made one thing clear, it’s that we cannot allow autism to become the “poor cousin” to other conditions simply because of a lack of understanding or visibility. People with autism have the right to have their “reasonable and necessary” supports funded under the NDIS. That must be an absolute.
Adeane and her husband have funded Max’s therapies and opted to send him to a private, independent high school – a “caring, nurturing school environment where he isn’t compared with his peers or measured against a ‘standard’ but Max is judged on Max”.
Even then, with mammoth family support, Max’s path has not been easy.
“He struggles with communication. His trouble expressing himself leads to a whole lot of pent-up frustration and we’re currently weaning him off anti-anxiety medication. He even struggles with things like heat sensitivity and sensory overload every day, but who can tell any of these things just by looking at him?
“He is doing so well, but that doesn’t mean that he doesn’t need people to be aware, to understand and not to have too high expectations. He does well on the surface but, spend a bit of time with him and you’ll soon work it out. And ‘working it out’, for Max, means we have to make adjustments – walk in his shoes, so that we can understand how to enable him to reach his full potential.”
The subjective experience of having autism can be significantly disabling, despite not being immediately obvious to outsiders. A negative narrative that paints autism as an overblown and over-diagnosed condition compounds that experience. Of course the term “autism spectrum disorder” reflects the wide variation in challenges and strengths inherent to each person with autism.
This means that, for many, Max’s experience of life will always be far removed from their own. But, as Max’s school has so rightly demonstrated, comparison is no friend to individual development. Educational, social, and emotional potential varies wildly, but it must be valued and nurtured regardless.
Early intervention is fundamental for autism spectrum disorder, and the cost of not making these supports available is simply too great for the community to bear – including social isolation, overwhelmed families and escalating lifetime support costs. In this respect, the National Disability Insurance Agency (NDIA) must be prepared to invest conscientiously and equitably. This includes understanding the unique, but often significant support needs of people with developmental disabilities.
Few families are in the position to have provided the costly therapeutic supports that Max required. By good fortune alone, his life trajectory was changed by an accident of birth. But there is also a Max in Inala, Broadmeadows and Mt Druitt. There is a Max whose parents rely on benefits to get through. There is probably a Max on your street, and he needs someone to notice, and a system that will act.
Creating an arbitrary hierarchy of need is not only morally unacceptable, but is in fact the very antithesis of all that the NDIS stands for. Likewise, the implication that autism will be the straw that breaks the NDIS’s back, as some commentators have suggested, is a slap in the face to those who need access to a sufficiently skilled and resourced clinical and service community.
But, more than that, people have the right live in a society which acknowledges that just because you can’t see or understand something, doesn’t mean that you can disparage its lived experience. Seems like very little to ask, doesn’t it?
Simon Wardale is the manager of Endeavour Foundation’s Specialist Behaviour Service.