Grace Tame

On the eve of Autism Acceptance Month, the clue to 30-down in the Hobart Mercury’s giant crossword was “competent”. The four-letter answer was “able”.

It got me thinking about how the construct of “disability” is often framed as synonymous with failure, incompetence and inability.

This month, the federal government released its draft National Autism Strategy, which aims to achieve inclusion, acceptance, recognition of autistic strengths, and better quality of life and living standards for autistic people. This enormous step is worth celebrating. For the first time, autism is centrestage on the national agenda. 

The need for a National Autism Strategy signals there is a problem. The problem is not autism itself or autistic people. The problem is a society-wide, albeit mostly unintentional, failure to accommodate the needs of autistic people, embrace our way of thinking and treat us equitably. It’s general ignorance of the nuanced reality of autism that has resulted in stigma, shame, stereotyping, systemic discrimination and disadvantage. 

The strategy alludes to this in an important explanation of why autism can be disabling. In some cases, the level of intensity of autism is a disability in and of itself. In other cases, being autistic becomes a disability as the result of battling negative attitudes, ignorance and a generally unsupportive environment.

I should add the disclaimer that I am autistic. While I am an advocate of the community, I can only speak to my own experience. I received a clinical diagnosis a decade ago at age 19, after a months-long process. My psychologist first tested the waters by handing me a picture book called All Cats Have Asperger Syndrome. On each page is a picture with a corresponding piece of text outlining a feline trait that matches an autistic trait. The book is lighthearted, but I was in tears by the end of it, upon realising I was either autistic or a cat.

Turns out, I’m not a cat.

I digress.

More than 200,000 Australians have an autism diagnosis. This is likely an underestimation for several reasons, including costly and lengthy diagnostic processes and misdiagnosis. You may know and love many autistic people without being aware of it, because many of us learn to mimic others and suppress or “mask” our needs in order to fit in. It’s when needs go unmet that they can manifest in the form of debilitating, complex issues.

Along with social inclusion, economic inclusion and better healthcare outcomes, diagnosis is listed as a key area of the strategy’s focus. 

The average life expectancy of autistic Australians is 20 years shorter than the non-autistic population. We face markedly higher rates of homelessness, sexual abuse, unemployment and suicide. For autistic cohorts who are also members of First Nations, LGBTQIA+, migrant, refugee and other marginalised communities, discrimination and disadvantage are further amplified. 

For this reason, the National Autism Strategy was recommended in the report delivered by the Senate Select Committee on Autism in March 2022 following an inquiry into services and support for autistic people. The final strategy is expected at the end of this year following the public consultation process.

This draft is a great starting point, but it leaves a lot to be desired, namely detail and practical measures. While this is arguably the purpose of the incoming “Action Plans”, it’s difficult to implement something that isn’t in the overarching strategy. Even a brief mention of some concrete solutions would go a long way.  

The problem is a society-wide ... failure to accommodate the needs of autistic people, embrace our way of thinking, and treat us equitably. It’s general ignorance of the nuanced reality of autism that has resulted in stigma, shame, stereotyping, systemic discrimination and disadvantage.

Providing autistic people with as much specificity as possible can reduce anxiety and confusion. Hopefully the final strategy will take a more defined shape following the integration of public feedback, with autistic voices at its heart.

That the draft was co-designed by autistic people, their families, carers and the wider autism community should also be celebrated. But what did the co-design process look like? Did autistic voices lead the dialogue, write the strategy or have final say? (The formatting suggests not. The Theory of Change diagram on page 50 is out of alignment. The columns are wonky. The rows are unevenly spaced. The text is pixelated. This is autistic nightmare fuel.)

We centre lived-experience not through limited consultations but through integrating experts permanently into the hierarchy of decision-making. We centre lived-experience by hiring marginalised people, not by temporarily including them, then sending them back to the margins.

The strategy is laden with motherhood statements and buzzwords that hide the lack of tangibles. 

Its vision is “for a safe, inclusive society” in which “all Autistic people are able to fully participate in all aspects of life, in line with international human rights”. Its goal is to improve nondescript “life outcomes” for every autistic person. This is a noble albeit vague aim, poised to be sucked into the black hole of subjective interpretation.

As for the key themes that emerged from the consultation process, such as providing “autism-friendly” healthcare and mental healthcare, many of these are well-intended and sensible but lacking in clear execution methods. For example, “sensory-friendly public, physical and online spaces” is ambitious and open-ended. And how does the government propose to “ensure positive representation in media, sports and the arts”? What does autism training for teachers and schools entail? 

The Social Inclusion breakdown doesn’t mention education, which is surely an oversight. Education is mentioned elsewhere but in the context of providing background about autism when surely it should be a standalone key focus area. Are the right government departments involved? What role will the education minister play?

The draft states that the Commonwealth intends to work “alongside” the autism strategies of the states and territories, “where they exist”. What of the jurisdictions that don’t have strategies? Is it an expectation that all jurisdictions will develop and adopt one? Beyond this, how will the federal government work with the state and territory governments? Education, social housing and child protection, for example, are primarily state and territory responsibilities. 

Why are evidence and research listed as separate areas of government responsibility? Research is key to understanding the nuances of autism. There is minimal data on intersectional autistic experiences, for example. Autism research is grossly underfunded and not prioritised in the existing funding model.

Which leads to the question: what are the funding commitments more broadly?

As for ensuring its effectiveness, the draft strategy states that one of its essential features should be arrangements to measure progress and ensure accountability for actions and outcomes. Such as? Without legislated governance mechanisms, what systems will guarantee the fulfilment of the strategy? Will there be consequences for noncompliance?

To help realise the strategy’s vision, the following are some practical measures that align with the recommendations of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability’s final report.

A good start would be to close all Australian Disability Enterprises, where autistic people work for less than $3 an hour, by 2035; close all group homes within 15 years, and open up all schools, to all kids, by 2050.

The Disability Support Pension needs to be reformed. The current payment amount is abysmal and eligibility stops people securing small amounts of work. Similarly, the Disability Discrimination Act should be amended to switch the burden of proof from autistic employees, such that employers have to prove they didn’t engage in discrimination. 

Autistic people need more support when interacting with the justice system. This reform would include ending the indefinite detention of people with cognitive and psychiatric impairments, which the royal commission’s final report cites extensively.

And more funding is needed for independent peer, individual and systemic advocacy for autistic people.

For a thorough, evidence-based road map for how to support autistic people across areas such as healthcare, education, employment and interpersonal relationships, I highly recommend Avoiding Anxiety in Autistic Adults: A Guide for Autistic Wellbeing, by Dr Luke Beardon.

For all its laudable efforts to diversify and expand the representation of autism, the strategy is haunted by some tired tropes. The “About” section opens with an articulate summary of the diversity of autistic expression and experience but paints an overall bleak picture of autism as a burdensome “condition” that leads to negative experiences of employment, education, safety, health and wellbeing.

On the one hand, it is vital to outline the barriers faced by the autistic community in these areas without whitewashing the truth. However, the truth also includes an extensive list of ways in which autistic strengths can positively impact these domains. A welcome inclusion to this section would be some specific examples of how autistic people add to the focus areas, as well as the problems we often face in each context.

There is a brief acknowledgement of the potential for autistic people to thrive and excel in environments that support our needs and abilities, however the data is disproportionately deficit-focused. Autism is not a defect or medical illness that should or can be fixed. It’s a measurable difference in processing and communicating information that needs to be better understood.

It is a fallacy that everyone is “a bit on the spectrum”. Autism is genetic. If everyone was a bit on the spectrum, vacuum cleaners would not sound like jet engines. The “spectrum” is not code for the broader human experience. The autism spectrum specifically applies to the variation in intensity of autistic traits and needs that fall within distinct sensory categories such as light, sound, taste, smell, touch, proprioception and interoception. 

For example, some autistic people crave certain food and surface textures, and are averse to others. Some autistic people are non-speaking, while others are hyper-verbal. Some autistic people find loud music soothing, others can’t filter background noise. Hence Dr Stephen Shore’s assertion, “If you’ve met one person with autism, you’ve met one person with autism.”

The intensity of traits and needs depends on the autistic individual’s unique sensory profile, and how they respond to different external stimuli. An autistic need is not a want or a preference, it is a fixed requirement to function optimally. You can’t change the needs of an autistic person, but you can change their environment.

More than anything, this strategy underscores the need to establish a sense of balance that cuts through the view of autism as a condition of either extreme desperation or freakishness. 

It’s neither a tragedy nor a blessing. It’s not even a condition. It’s a neurotype. In the words of autistic actress and advocate Chloé Hayden, autism is “different, not less”. Nor is it a “superpower”. The myth that every autistic person has a “special talent” undermines how challenging it is to navigate daily life in a world that primarily caters to the predominant neurotype. What appears as natural brilliance may in fact be the quietly but tirelessly honed skill set of someone who has spent a lifetime overextending to reach the baseline of acceptance and validation.

This strategy needs substantive detail and measurable outcomes to realise its potential to reframe autism in high-definition. There’s a long way to go, but there is also promise, and promise is the seed of change.

April is Autism Acceptance Month.

This article was first published in the print edition of The Saturday Paper on April 13, 2024 as "I am not a cat".