Opinion: Regarding the Sydney Morning Herald’s front page: May 20, 2023.

^{EDIT: It’s encouraging to see that the digital version of the article has already steered the headline and opening paragraphs away from focusing on autism rates, instead discussing the recently released statistics about the number of Australian children on the NDIS. There are, however, still a number of loaded implications and poorly phrased quotes throughout, that I hope will be addressed in time.}

There are days when it feels like neuroaffirming behaviours and society’s understand of autism is on such a strong positive trajectory. And then there are days like today (Saturday, May 20, 2023) when the Sydney Morning Herald publishes an article on its front page called: “Surge in children on NDIS for autism” which contains misinformation, negative connotations, and potential trauma to the autistic community.

The article was based on the statistic that there has been an increase in the last three months of almost 1% of children on the NDIS being listed as autistic. To most people with knowledge of autism, the autistic community, and the current education around neurodivergence, if anything this seems small.

However, Jim Mullan, CEO of Amaze (“the peak body for autistic people and their supporters in Victoria”) was quoted as saying that this statistic was “greater than a scale we would normally expect to see.”

At first I assumed his quote was truncated, and that the elaboration would explain why this increase is actually perfectly unproblematic, and I felt sorry for him that he’d be thrown onto the front page of the SMH alongside an implication that something dodgy was going on.

But then I read the rest of the article (page 14, for those playing along with a hard copy), and it got worse: “It could be suggested there is some kind of rorting of the system around autism.”

Sigh.

Massive, great, pit of the stomach, trying not to get angry, sigh.

(And, let’s be honest, a lot of stimming, a hot shower, copious ranting to my spouse, and off we go…)

People who don’t know about neurodivergence, particularly autism, might not understand the gravity of what has been said and implied in this article, nor be aware of how misinformed the journalist in question is.

So let’s begin.

There’s No Such Thing As Severe Autism

In the very first paragraph, the term “severe autism” is used. For anyone with any knowledge of or experience with autism, this is a massive red flag. There is no such thing as severe autism, or mild autism. Nor low-functioning autism, or high-functioning autism.

That’s not how this works.

Even within diagnostic criteria (which are also outdated and questionable in many ways) there is no classification for “severe autism”. Autism, when diagnosed, is categorised into one of three levels.

• Level 1 means the person in question is autistic, but does not require substantial external support to function in society. It does not mean they don’t require any support. These people are not eligible for NDIS funding, because the DSM-V and the Australian government do not see them as having a monetary need based on their disability.
• Level 2 means the person is autistic, and requires substantial support.
• Level 3 means the person is autistic, and requires very substantial support.

Level 2 and 3 diagnoses make the autistic person eligible for NDIS funding, as these substantial supports involve costs that the average person cannot easily afford without government assistance.

These supports could include occupational therapy, psychology, home assistance, social assistance, and more.

So for this article to imply that the system is being “rorted” in order for more people to have supports funded makes no sense. If the autistic person in question requires substantial supports, then they are Level 2 or 3, and are genuinely eligible for the NDIS. Unless autistic people who should have a Level 1 diagnosis are going to an OT for fun, I’m not sure what the journalist, Natassia Chrysanthos – let alone Jim Mullan – thinks is being achieved by an assessing psychologists and paediatricians forging a Level 2 diagnosis.

Similarly, the apparent “disappearance” of Level 1 children may be related to the importance of early intervention being impressed upon more and more clinicians. Potentially more children who would previously have been diagnosed as Level 1, are now seen as requiring substantial support (in the form of early intervention) and therefore classified as Level 2.

Mismatching Stats?

So if the system isn’t being rorted, why don’t the NDIS stats match known statistics in the real world that Mr Mullan is referring to?

Firstly, what statistics are even being matched here? Incidence of autism requiring support in the population? Where do those statistics come from? Surely these numbers come from an audit of the population, based on diagnosis by assessing psychologists and paediatricians. Which, if the audit was conducted concurrent to the recent NDIS data release, would statistically line up. That’s the point.

If the recent NDIS stats are being compared to known population stats, then it would be acknowledged that these stats are also increasing over time.

Why?

Where Are We All Coming From?

There is no “epidemic of autism.” Instead, what we face is an epidemic of need.The main reason we are finding more autism is simple: Clinicians are getting better at spotting WHAT WAS ALWAYS THERE.

https://www.statnews.com/2023/03/23/autism-epidemic-cdc-numbers/

Between 2015 and 2018 there was a more than 25% increase in the number of people confirmed as autistic in Australia. Since then numbers have continued to rise for many reasons.

Greater diagnostic skills and acknowledgement, public conversation and exposure to autism, unmasking, COVID-19, the cost of living, and the visible presence of many other disabilities, are all relevant factors.

As diagnosticians improve their skills and understanding, children who would previously have been said to be “quirky” or “weird”, fussy eaters, or having social skills deficits, are being recognised as autistic. Assessing professionals are less concerned by the old-fashioned stigma related to autism, and more concerned with honesty and giving people the support they need and deserve. As such as they’re less likely to, as many of us have heard, “Err on the side of caution” and refuse a diagnosis. More are seeing autistic children for what they are. This does not mean more children are autistic; it means fewer people are waiting til their adult years for late diagnosis or, worse, living their entire lives feeling broken and ostracised.

Public exposure to autistic people has allowed many adults to recognise neurodivergent traits in themselves. Celebrities and public figures known for something other than their neurodivergence such as Grace Tame, Chloe Hayden, Emilia Rusciano, and Hannah Gadsby, have openly spoken about their experience being autistic, and lead a large number of adults (particularly women) to be diagnosed, either formally or self-identifying. Many of these adults are then able to recognise many of their childhood neurodivergent traits in their own children, and have taken them to be assessed so that their children don’t grow up with the same difficulties and trauma they have experienced themselves. This is not overdiagnosis; this is a greater awareness of the existence of autism, and a healthier journey for autistic youth.

Young people today are a far more authentic and diverse crowd than previous generations. They are largely less judgemental of each other, and more inclusive. Thanks to the internet and social media, children and young people are more able to find “their people” outside their immediate community. As such, they are significantly less likely to mask as frequently as previous generations. Fidget toys are lauded, stimming is acknowledged as a positive outlet, and children are less often forced into uncomfortable chairs and “whole body listening” situations in the classroom. Autistic kids are visible in a way that they weren’t safe to be in the past. Kids who would have previously flown under the radar, been seen as quiet or shy, or just had trouble making friends, are often more evidently neurodivergent because they’re allowed to be without the stigma previously attached.

Another factor that has lead to an increase in confirmation of neurodivergence in recent time is COVID-19. No, I’m not saying it has anything to do with the virus or vaccines. It has to do with lockdown. With parents attempting to educate their children at home. Parents who previously engaged heavily with before- and after- school care, and extracurricular activities, to help with the juggle of full time work and parenting, now being with their children 24/7 and noticing things they’d previously not seen. Children not masking as heavily without the societal pressures of going to school and socialising outside the home. The number of parents who, in seeing their children clearly and constantly for an extended period of time in a way that few parents in history have collectively had the opportunity to do, lead to many having their children assessed. But that was ages ago, right? Well…

While the recent article discusses an increase in NDIS funding over a recent 3 month period, it does not discuss the implications of this regarding timing. When a person receives confirmation of being autistic, they are not immediately added to the NDIS list. Far from it.

The Long Road to NDIS Support

Generally, if a parent takes their child to the GP to raise a suspicion of neurodivergence, the GP refers them to a paediatrician. Paediatrician waitlists are incredibly long in Australia. Most states do not publish data, but Queensland, for example, has an average wait of over a year to see a paediatrician. 

Once you get to see a paediatrician, they can either decide to conduct the assessment themselves (however, not at that initial consult, so often months further down the line) or refer you to an assessing psychologist. This can also be a wait of 3-12 months to get an appointment. The assessment process takes many hours, over multiple days, over multiple weeks, and involves a number of people (parents, teachers, child). The report then needs to be written, and a further appointment made to discuss with the parents. If you have gone through a paediatrician, there is often then a further appointment with the paediatrician.

And then once all of it is confirmed? There is minimal support to receive NDIS support. This is a self-motivated exercise, and one that is complicated enough that there are entire businesses and advocates who provide the service of helping people fill out their NDIS forms. Half of this form also needs to be completed by a medical professional, so you need to find a practitioner who already treats your child who also has the time (and knowledge and willingness) to complete their part.

Even once all of this is done, and you submit your forms, it can take up to 3 weeks for a response. If you receive a favourable response on first pass, you still  then need to have a meeting with someone from the NDIS (another appointment, another time slot to find) to create your plan. Your plan is done, but no, it can take up to 3 months to approve plans for children under 7. And then you’re an NDIS statistic.

Add that together, and you’re looking at up to (and sometimes over) 3 years from the time a parent is concerned enough to ask for help to the time they get NDIS funding, and that’s if they’re listened to and adequately supported at every point. And without spending any time on second opinions, appeals, or taking pause to catch their breath.

This timeframe also only applies if they decide to apply for the NDIS immediately after diagnosis. Many don’t. Many parents absorb affordable support costs into their own budget, sometimes simply to avoid the pain of applying for the NDIS, or using partial funding through private health cover. However as interest rates and the cost of living has continued to rise in Australia, more people are being forced to apply for any and all government assistance they are genuinely entitled to, in order to stay afloat. Again, this is not an increase in diagnostic rates, but an increase in the number of people requiring NDIS funding who have been eligible for it all along.

Why is Autism Funding Increasing Compared to Other Disabilities?

Let’s consider the visibility of disabilities in our society, and how they’ve been recognised over the years. Say a child has a missing limb, whether this is from a birth defect, an accident, or a health related situation such as cancer. It has always been obvious that these children are missing a limb, and therefore they have always been considered eligible for disability support where support has been available. Is the incidence of missing limbs likely to be significantly increasing over time? No. How about disabilities involving an impairment of senses, such as children being deaf or blind? No.

But invisible “disabilities” such as autism are being confirmed more often for the reasons stated above. It does not mean that there’s a decrease in the other conditions, or that there’s an increase in the incidence of autism. Simply that it’s being confirmed more accurately, and therefore more often, whereas other more obvious conditions are relatively static in their confirmation over time. Of course it would appear that neurodivergence is on the rise.

So why does it matter?

Why is it important that a journalist doesn’t use the term “severe autism”? Why is it dangerous that a CEO of a leading autism charity would imply that there’s overdiagnosis of Level 2 and 3 occurring?

Because autistic people matter. Their experience and diagnosis being invalidated and questioned by the public due to misinformation is traumatic and damaging.

Their parents, who have gone to incredible and exhausting effort and expense to have their child assessed to get them the support they need, matter.

The more society is educated on how autism works – namely that it’s not about severity or functioning levels, but different needs and accommodation requirements – the more autistic people will be heard and included as they deserve to be.

The more parents are encouraged and empowered to have their children assessed and supported, the fewer adults in the future will struggle with their autism, and with the mental health conditions that come from being undiagnosed and unsupported.

Words matter. Implications matter.

And when you’re writing about it for the front page of a respected newspaper it really matters.

And when you’re the CEO of a charity representing the very people being damaged by your quotes? Then you need to consider who your words are helping, and who you’re hurting. Are you intending to reduce the pressure on the government’s funding, or are you here to help autistic people?

I’m still very hopeful Mr Mullan’s words have been taken massively out of context and the article is simply misinformed, and another victim of the death of the subeditors, because I have to date been very impressed by the work Amaze does. And I’m hopeful that Ms Chrysanthos will take the opportunity to learn more about appropriate language and phrasing around neurodivergence, and to reach out to autistic-lead organisations such as Yellow Ladybugs to learn more should any future federal health articles reference autism and the autistic community.

Because words matter.