Grace Tame

There’s more than one way to clear a pathway. Personally, as a sworn enemy of the leaf blower, I prefer methods that aren’t loud, lazy, clunky and repetitious.

Speaking of bureaucracy, this week the federal government’s Department of Social Services released its first-ever official National Autism Strategy and corresponding action plan.

It’s not my wish to sledge either document. However, I feel duty-bound to warn any prospective readers that a metaphorical axe is required to cut through all the jargon, pixelated infographics and stock photos used to pad out a total of 136 pages. I very nearly resorted to melting them over the stove and snorting their fumes just to get through them. Then again, I am yet to read a single bureaucratic paper that doesn’t have a sedative effect.

While Amanda Rishworth – who’s apparently been taken down a peg by spellcheck and is now the Minister for Social Service, singular – writes in her foreword that the strategy is “for every Autistic person in Australia”, the irony that the document isn’t exactly autistic-friendly isn’t lost on me, an autistic person in Australia. And I can’t proceed without roasting the rendering of “overseen” as “oversighted” on page 6 – the ultimate oversight.

That said, the strategy’s target audience is obviously not the autism community alone. The problem with many of these initiatives is that they rarely make it out of their silo. The burden of responsibility therefore remains on the directly impacted party. Whether the focus is autism, First Nations justice, family, sexual and domestic violence, or any other matter, we should all be actively engaged in the change-making process. Every Australian would be better for learning about the strengths of autistic people as well as the challenges we face.

At first glance, both the strategy and its corresponding action plan are well-meaning, albeit vague, wish lists lacking in practical measures. Little of the content will be new to autistic people, their families, friends, carers or disability rights advocates.

We need to stop the NDIS rejecting autistic people. It strikes me as hypocritical that the NDIS is flaunted in the strategy when the application process and eligibility criteria are increasingly prohibitive.

Many of the “actions” aimed to drive progress across four domains – social inclusion; economic inclusion; diagnosis, services and supports; and health and mental health – are simply intentions that rehash what the autism community has been saying for years. (Trust me.)

As the strategy acknowledges, for far too long autistic people have been misrepresented, misdiagnosed and mistreated. Autistic people are six times more likely to be unemployed and 2.5 times more likely to experience depression than non-autistic people. We face markedly higher rates of discrimination, homelessness, suicide, sexual abuse and repeated or cyclical instances of violence. We are also over-represented in the criminal justice system, which is a direct pipeline to intergenerational trauma.

The strategy places a crucial emphasis on priority cohorts facing compounding disadvantage such as First Nations people; culturally and linguistically diverse (CALD) people, culturally and racially marginalised (CARM) people, children and young people, women, girls and gender-diverse people, LGBTQIA+ people, older people and people with very high support needs. It also adheres to a human rights model of disability, with intersectionality, strengths-based and neurodiversity-affirming approaches at its core.

These elements are commendable, as is the focus on the need for neuro-affirming language – a need that was brilliantly demonstrated by the reference to us, in an ABC news report on the strategy, as “a group that lags behind the rest of the population in many areas of life”.

To be clear, autism is not the problem. These failures to accommodate autistic people in our society are born of systemic and attitudinal barriers constructed with an imperialist, patriarchal context that largely services the needs of heteronormative, neurotypical, non-disabled, middle-aged white men. This really is an issue of public health. Autism is not an identity, it’s a biological difference – a natural variation in the human genome – that creates a unique sensory profile impacting how individuals receive, process and communicate information. It cannot be removed or augmented in any way internally, but it can be managed, which is in part what the strategy aims to achieve.

The strategy lists among its aims inclusion, representation, recognition of autistic strengths and assurance that autistic people have a strong voice, including those who are non-speaking or minimally speaking, recognition of individual diversity and capacity, and better quality of life and improved living standards.

That all sounds great in theory, but when we consider that the National Disability Insurance Scheme – one of the nation’s key existing support mechanisms – is facing cutbacks and that autistic children (and adults) are being kicked off it as we speak, it’s hard to see how any of this holds water. Collective trust has been eroded.

We need to stop the NDIS rejecting autistic people. It strikes me as hypocritical that the NDIS is flaunted in the strategy when the application process and eligibility criteria are increasingly prohibitive. We also need peak autism-focused advocacy bodies and service providers to be properly funded. How else can we expect any interventions to be properly implemented?

That the strategy is not binding on states and territories is a huge flaw. In my home state of Tasmania, we don’t have a strategy, and our only autism body, Autism Tasmania, was shut down last year due to lack of funding – not that it ever received state government support.

The strategy’s first action plan has been assigned $42.3 million over seven years. That’s just over $6 million a year to meet the 22 commitments laid out in the action plan. That’s a tight budget, particularly considering it must include the cost of establishing and maintaining oversight committees, reviews and other overlapping, can-kicking infrastructure that often delay immediate, direct action and funding support for existing frontline services that are otherwise ready to tackle some of the problems outlined in the strategy.

For example, the action plan for the first year mainly entails conducting reviews, including of things that the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability already reviewed two years ago. Some $858,000 has been committed over two years to “develop and implement an evidence and evaluation framework to lay the foundations of The Strategy”. Isn’t the strategy in and of itself a foundation? There’s double-backing bureaucracy in this document that is getting perilously close to a Utopia script.

By comparison, less than $500,000 has been allocated to improving diagnostic processes, which have historically been costly, long-winded, layered, complex, discriminatory and in many cases traumatising. Not to mention there are still so many hoops to jump through before a clinical diagnosis can be explored.

On the upside, it’s a welcome acknowledgement that insufficient data relating to the autism spectrum has been collected to adequately inform policy and decision-making. We’re still contending with stigma, and outdated stereotypes that focus on a very narrow representation of autism as a deficit.

It’s also reassuring to see that lived-experience insights and community co-design have been recognised as essential to these processes. “Nothing about us without us,” as they say. Some $20 million over four years is going towards a peer-support program that will “provide lived-experience knowledge, empathy and culturally tailored advice for Autistic people”. Just over $12 million over two years has been allocated to a “dedicated knowledge translation body, which will ensure academic research into neurodiversity informs and improves the policies and services impacting Autistic people’s lives day to day”.

Hopefully that consultation with autistic people includes a dedicated effort to directly involve autistic people with higher support needs, who are often overlooked and spoken for – as opposed to spoken to – during these processes.

Ultimately, the strategy is a vital first step. It is worth celebrating because it’s more than we have ever had. Its existence is in and of itself a platform that can be leveraged to raise awareness and call for better outcomes. The autistic community needs it, and as an autistic person, I am grateful for it. It’s a work in progress. While it’s far from perfect, a world without leaf blowers is in sight.