Navigating the NDIS with Autism (A Guide for Those With Autism and Their Carers)

Getting onto the NDIS is not easy, even for people with autism who in many instances are almost guaranteed a spot by virtue of having autism. Despite this “almost guarantee” it is sometimes harder for an autistic person to get on the NDIS than a non-autistic person, and the reason probably won’t surprise you.

The application process is not designed for autistic people and being autistic actively harms our ability to submit an application.

This article has been designed to be as helpful as possible to any reader. If you just want an answer to the question without context, jump straight to “How to Write an NDIS Application”. If you’d like to understand one of the many sources for autistic difficulty with NDIS, read “The Underlying Difficulty with Autism and the NDIS”. If you’d just like a breakdown of how the NDIS perceives autism so that you can better create your own solutions according to your understanding, read “What is Autism According to the NDIS?”.

The Underlying Difficulty with Autism and the NDIS

This is something many of us autistics (myself included) have to deal with every day, and it’s not always easy to navigate. People and forms alike often ask questions expecting you to answer them honestly, but they’re actually looking for an answer that is fundamentally different to the question they asked. For example, if someone asks you “how does your autism impair your day-to-day living” what they’re actually asking is “how does being autistic mean you are less capable than someone who is not autistic?” – it is NOT asking how you are impaired, it is asking how you are impaired compared to normal people, which is honestly something many autistic people can’t answer because we lack the experience of what a normal person is like.

For non-autistics reading this, imagine if I were trying to establish if you were disabled and I asked you about your favourite sport. Now let’s say I marked you poorly if you did NOT answer with a video game title. Electronic sports (called E-sports) are a thing. They are one of the most profitable sporting industries in the world and are quite popular among disabled demographics. Now imagine if I asked you “how do you think not answering with E-sports makes you impaired?” – sounds ridiculous right? Well, you might think that and you’d be right to think that, but honestly, you are impaired in this scenario. By not working with the same definitions or understanding as the person who asked you the question, you are at a fundamental disadvantage. In other words, if you’re using the wrong dictionary, you are impaired in your ability to follow or “correctly” respond to the conversation. Imagine if the question I asked was “How do you think loving football makes you impaired?” and you had to figure out that the correct answer was “because it makes me a social outcast in a world where people think the only sports are video games”  – this is often what being autistic is like all the time.

Now let’s go back to the very real NDIS question. To an autistic person, you are essentially asking “how does your autism make you less normal, and how does that actively harm your ability to be part of society” – and to many autistic people, the correct answer is that it doesn’t. The thing that is harming us is not the fact that we are using a different dictionary, it is the fact that social norms often make it unacceptable for us to ask what the correct dictionary to use is. That isn’t autism making us impaired, that’s a combination of autism and the person asking the question. To many autistic people, autism isn’t an impairment; we -are- autistic. Autism isn’t the impairment, the fact that society isn’t also autistic is the impairment. In the same way that it would be thoroughly inappropriate to ask “How does being a black person make you impaired”, it is also inappropriate to ask “how does being autistic make you impaired” – it is completely context-dependent, and the context is whether or not you live in a society that condemns you for being different.

What is Autism According to the NDIS?

Autism is a disability recognised by the NDIS on List B as a condition that is “likely to result in a permanent impairment” – note having autism is not enough, you must prove that your autism causes impairment. This might sound a bit strange but let me explain. According to all NDIS documentation published between 2013 and 2023, the NDIS is designed to “help you address

needs that arise from an impairment” (Your Plan page 7), and in the official guidelines for application, they state that you need to have “…a disability caused by an impairment” which they immediately clarify: “we mean a loss or significant change in your body’s function, structure, or in how you think and learn. Under the law for the NDIS, we check if you’re eligible based on your impairments, not your type of disability or diagnosis” (Applying to the NDIS page 2). This is all based on the outdated 1991 version of the IC-IDH (today known as the IDF) which provides more concrete definitions for the terms “Impairment” and “Disability” within these contexts. It should be noted that international standards have not been based on these definitions since Australia helped rewrite those standards in 1993.

Okay, confused? Well, you should be. Not only is the NDIS using outdated definitions that are no longer recognised by the international community, but it’s also poorly transcribed those definitions into its documentation, resulting in a system that actually looks like it shouldn’t actually include autism (since autism is not a “loss” of functioning in the same way as a person suffering from dementia or the loss of a limb might be).

To be clear, most disabilities are NOT caused by an impairment, impairment is typically caused by either a disability or the social framework around that disability. Likewise, many of the definitions and guidelines of the NDIS are based on documentation developed around the time of the DSM-IV and have not been updated to reflect modern understanding since the publication of the DSM-5 (this situation is current as of February 2023 and it should be noted that the NDIS still uses the term “Asperger Syndrome” in many areas such as List B when that has largely been considered an outdated term since the publication of the DSM-5 in 2013. Autism is also not the only disability affected by this and many modern disabilities are not considered disabilities at all by NDIS standards, for example, my own disability of catatonia).

Fortunately, autism does appear on the pre-approved lists for disability according to the NDIS websites. So the fact that the definitions are outdated doesn’t matter too much because a severe enough case of autism is essentially given a clean pass according to the NDIS’ own listings. What this means is, for an autistic, it’s very hard not to get caught by these sorts of definitional conflicts. When we try to research the wants, desires and criteria of the NDIS, we are met with a barrage of outdated and conflicting information. But ultimately, because the NDIS already recognises autism and Asperger’s as “likely to result in a permanent impairment”, the only thing we have to do is prove that we are impaired. That’s it, that’s the only thing we have to do.

But, that’s easier said than done.

How to Write an NDIS Application

The following advice comes from multiple sources ranging from general practitioners to occupational therapists to former members of the NDIS approval board. The exact wording comes from Stuart McDonald, one of the most highly qualified physios in Australia. It is the single best advice that I have ever encountered for both autistic and non-autistic people in applying for the NDIS and it is advice I wish that I’d received before my own application process.

The most successful letters or reports that I write for my clients with or applying for funding under the NDIS are those that tell the story of how a person’s bodily experiences impact their capacity to thrive in life, and how any intervention I supply will provide them with a greater likelihood of thriving in life.

In other words, I tell the story of how severely their disability impacts their life. They get funding.

They must have a condition that is medically managed, and the requests for aid or funding or intervention must be reasonable, etc.

But the reports that work are the ones that tell the story. Where necessary, I provide supporting evidence (whether qualitative or quantitative, both from the client’s history and my measurement of their capacity and from what the literature says about their particular concerns). But overall, it is their story that moves the decision-makers (as long as it aligns with legislative stuff).

The issues that seep into that model are most obvious when confronted with an NDIS decision-maker who is ill-informed, bigoted or jaded and bored. And when they fail to use fundamental critical thinking skills to see how what has been about a person is directly causative of disability. And the recourse for amending or appealing decisions is useless where those decisions impact a person’s well-being immediately. It’s quite horrifying at times.

Many professionals make the same mistake: They treat the reporting like a WorkCover claim. Wrong.

And many clients don’t want to be “seen” or “described” as being “disabled”. Labels can be very painful. And arguments make sense, especially critical ones.

The key is to forge a critical argument in terms of its story. Science and scientific-sounding writing doesn’t have to be boring or analytical or avoid telling the story. In fact, all good science tells a story. We just have to learn to see it and craft it.

One of my favourite opening lines goes something like this:

“In our sessions together, I use a qualitative phenomenological narrative approach to the assessment …”

This basically means, in translation: I listen to their story and how it feels to be them

All good essays are stories: Start braid where you introduce the world-building (context of the science); then introduce the characters (definitions and hypotheses); introduce the tension (contrasting opinions and the question of whether the solution you propose really does solve the presented problem); journey, including the strangers you meet along the way (research did/didn’t work, here’s why); resolution with further questions for more study (or sequels).

The key is to make your story (propaganda?!?) not seem like a story … take them on a journey scientifically, medically, without them even realising it.

A good musical score isn’t truly noticeable. It might be beautiful, but it is simply a part of the whole, and the decision is made as an almost emergent property of the storytelling.

I have examples of support workers and coordinators with “lived experience” making horrendous decisions for clients because of their biases.

But then, I have even more examples of medical and allied health making horrible decisions because of their biases.

Sorry if I’m being too abstract and metaphorical.

When the NDIS works, it can be amazing.

When it doesn’t work, it fails in a spectacularly, miserably and heart-wrenching way.