Ep85: The ASD Odyssey- a reply

Ep85: The ASD Odyssey- a reply
31 August 2022

Fellows of the College can claim CPD credits for listening to the podcast and reading supporting resources.

The National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia aspires to streamline referral pathways so that children can get the right help as early as possible. But despite the best intentions of many clinicians, there are drivers in the health system that make implementation difficult. There are constraints in the way specialists can be reimbursed for time spent managing a case through the diagnostic process. And the extent of developmental disorders in the community may not be reflected in the depth of training in this area. We also hear about some breaking research into a highly accurate diagnostic screening tool that could reveal just how prevalent ASD is in the community.


Dr Paul Hotton FRACP (Staff Specialist in Community Child Health and Child Protection, Sydney Children's Hospital Network; Chair of CCCH at RACP)
with input from Associate Professor Josephine Barbaro (Olga Tennison Autism Research Centre, La Trobe University)

Written and produced by Mic Cavazzini DPhil. Music licenced from Epidemic Sound includes ‘Falling from the Clouds’ by Sven Lindvall, ‘Lantern Room (Instrumental)’ by Torii Wolf and ‘Not Blue’ by Kylie Dailey. Image by Elva Etienne licenced from Getty Images.

Feedback on this episode was kindly provided by Dr Michael Herd, Dr Beatrice Leuthold, Dr Rosalynn Pszczola and Associate Professor Josephine Barbaro.


Australian National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders
Implementing the National Guideline online explainer 

Watch Me Grow surveillance program
NDIS and access requirements for Autism
Gender and Age of Diagnosis Time Trends in Children with Autism Using Australian Medicare Data [J Autism Dev Disord]
Diagnostic evaluation for autism spectrum disorder: a survey of health professionals in Australia [BMJ Open]
Diagnostic Accuracy of the Social Attention and Communication Surveillance–Revised With Preschool Tool for Early Autism Detection in Very Young Children [JAMA, Barbaro]
Summarised in: Early detection of autism in infants, toddlers, and preschoolers [MJA Insight]



MIC CAVAZZINI:               Welcome to Pomegranate Health. I’m Mic Cavazzini and with me here today is Paul Hotton. Paul, please give us your elevator-pitch CV.

PAUL HOTTON: Yep. So I'm Dr Paul Hotton. So I am a community Child Health Paediatrician at the Children’s Hospital in Randwick. And I'm also the Chair of the Chapter of Community Child Health at the College of Physicians.

MIC CAVAZZINI:               So you reviewed my last episode on the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia. It was developed by the Autism CRC, which was at the time a federally funded cooperative research centre. And you confirmed what I was beginning to suspect. That it's not just clinical practice that needs to change, there's a whole system around that’s sometimes in the way….

PAUL HOTTON: Yeah, I guess, the guidelines are guidelines. So they're really good. But the problem is, you've got lots of systems around guidelines that need to be addressed or managed to actually make the guidelines implementable, in a way. Systems around access to intervention,  to paediatricians, developmental services. People are aware of the guidelines, but it hasn't actually changed clinical practice, despite it being in for the last three years. I know lots of paediatricians that know about the guidelines, but actually hasn’t influenced then what they're doing. They're still referring in for multiple different reasons. And then I guess the whole concept of the guideline is you're picking one neurodevelopmental condition. And we know that autisms alone, there's a whole range of comorbidities and presentations of how they present. So it's quite a complicated system for people to understand.

MIC CAVAZZINI:               And let's just recap and simplify what I learned about this diagnostic triage. There are florid textbook cases of autism that a paediatrician could diagnose right away. And James Best even joked to me that the receptionist or his general practice would be able to make that call. But those presentations are the minority. Most times the paediatrician needs a report from the school, the family, from allied health to put together a more complete picture. That's what the National Guideline we spoke about is really trying to emphasise. And you said that that's what most paediatricians are doing anyway?

PAUL HOTTON: Yeah, I think the guidelines just highlighted what probably people were doing anyway, they’ve just formalized the guidelines. So, we talk about classic autism or the severe end of autism, where they’re on their tiptoes, flapping, no eye contact. Most people can diagnose that but actually that's like the tip of the iceberg of autism as a whole. There's a whole range of children and how they present. Because the range of the spectrum, there's loads of influences; language, development, intellect, ADHD, language. All of those aspects influence where the child is on the spectrum.

So a child presenting to a paediatrician—would see the child get a history, spend time with the child within their timeframe for the clinic that they've got, they may have to bring them back for more reviews. But in that meantime, they're trying to access reports from speech pathologists, psychologists, childcare, school, wherever the child interacts, it's not just coming from the parents perspective. Then they put it together, give a diagnosis, or they decide that actually, they can't make the diagnosis, and they need a diagnostic service to help with that formulation.

MIC CAVAZZINI:               And even within that more classic part of the spectrum, there are systematic hurdles. I think you said in your email that paediatricians can't refer to a speech pathologist.

PAUL HOTTON:Yeah, so there's a different question to where the child is, and the age that they're presenting to a paediatrician. So anyone under the age of seven doesn’t actually need a diagnosis. They just need to have areas of concern, and areas that they’re struggling with from language, fine motor skills, gross motor skills. Behaviour can add into it but it’s not specifically meant to be about behaviour. All of those things and they’re supposed to be able to access NDIS without a diagnosis. Eventually they will need a diagnosis for that intervention to continue, but they will need a disability diagnosis. Children under six, you still have to go through that process of whichever agency holds that link to NDIS, they still have to then deem that that child has got a need for intervention. So I think the under sixes is you're still trying to put them on to the waitlist for those services to see the child, do an assessment come up with what they think may be causing the difficulties that the child is presenting with.

You would imagine if you're seeing someone from a paediatric perspective, I should be able to use Medicare items to help families access intervention that's not necessarily using NDIS. But there's no direct referral to speech pathologists within the Medicare system, you often then have to send families back to their GPs to access Medicare-rebatable chronic management plans for five sessions through an allied therapist. And then there's nothing really for the over sixes, so they need a disability diagnosis and just being worried about autism doesn't get them intervention. So lots of the community health centres that have speech pathologists within public systems are all geared up to the younger age groups, because that's the bulk of the work and if you open up services, you get longer and longer waitlists. Often people put up specific intake and exit criterias for services.

MIC CAVAZZINI:               It's interesting that the only the GP has access to some of the funding models. And conversely, James Best was complaining that GPs aren't allowed to refer to a diagnostic team, they have to go to the paediatrician first.

PAUL HOTTON: It depends on how diagnostic services are set up. And that's the thing. So diagnostic services that provide sort of multidisciplinary face-to-face assessment, so the child meets multiple team members in the assessment, they've ended up over time, often being paediatrician-only referrals because of their wait times. Whereas some diagnostic services will still accept GP referrals as well, so that there's variation in those diagnostic services. And as wait times increase, a lot of the services that see GP referrals as well will end up having to say no, because the wait time for everyone else is getting longer an easier way to shut things down. And I think that becomes an equity issue, as well, then for families who can't afford a paediatrician who can't afford to keep seeing the GP, and GPs, especially in New South Wales have started to put a cost and not used bulk bill, that becomes a real cost for families.

MIC CAVAZZINI:               So going back to the paediatrician collecting all these reports, is there a big difference between conferring with your colleagues to come up with the diagnosis together, as opposed to the paediatrician absorbing all that information and making the call.

PAUL HOTTON: What was set up as a gold standard for autism assessment was a multidisciplinary team assessment. And multi-disc means I've got myself as a paediatrician, looking from a medical perspective, I may have a clinical psychologist that's looking for specifically autism, I may have a speech pathologist in there that's looking at language. We don't all have to be in the same room, we could all just individually assess the child and then we bring together our concept to make a decision about the child; What their fundamental difficulties may potentially be in a sort of, do they meet a DSM five criteria for autism? Is language, the more common thing with development questions?

The single paediatrician diagnosis that the CRC guidelines—that is still multi-disc, because you're still supposed to use the speech pathologist, the school report, but you then pull it all together. That is quite time-consuming, for single clinicians, paediatricians that are working in public or private practice as a single clinician. That takes a lot of phone calls, a lot of chasing up reports that may not be available, everyone working part time—so you've got to speak to someone when they're not working, you're not working—it's much easier then, a single face to face assessment to see a child and then pull everything all together straight in one assessment.

MIC CAVAZZINI:               Okay, so the fact that the default option for many paediatricians seems to be just referring on to the full multidisciplinary service; there are different answers as to why this is the case. I mean, you've alluded to one, that's it's so time consuming. There's an efficiency of scale, I suppose, of doing it all at once. Is there also a lack of clinical confidence amongst paediatricians? Is there pressure from the NDIS and other disability services to have that team diagnosis? Or D, all of the above?

PAUL HOTTON: I think it's possibly all the above. Definitely from a training perspective, I think many new paediatricians whether they’re general paediatricians, whether they're going into public or private practice, probably don't feel as skilled up from a training perspective. So most of them are only done potentially six months as a minimum of what we call behavioural and paediatric training within the College. They may have actually not done any developmental assessments as part of that six month period. So a lot of private work now we know is predominantly, up to 70% of their time, is developmental and behavioural difficulties in children across their lifespan, including mental health things. So I think, as you gain more experience in managing children and seeing different presentations, your confidence of course increases over time, so you become more confident later on versus when you're new. So you're always going to refer in.

I also think there are because wait times most diagnostic services have got wait times up to two years. If you see someone at the first appointment, as a single clinician, of course, I'm going to refer into a diagnostic service anyway. Because if I see them in six months time to pull it all together you might as well start the clock earlier. But of course, then you're going to be, “Well, they're on a waitlist for a diagnostic service. They're getting intervention. Let's just let the child wait.”

MIC CAVAZZINI:               Yeah, and what you've said about the developmental presentations make up about 70% of referrals, I heard that from a paediatrics registrar as well. As she told me that some of her colleagues are choosing to upskill in the use of ASD diagnostic instruments like the ADOS. Is that an appropriate avenue for professional development? Or should it should come earlier in the training?

PAUL HOTTON: I think it depends on where you're gonna go as a general paediatrician. Most of our trainees are dual-training in general paediatrics and community child health, which is a lot of the focus is around developmental behavioural issues. I think, so if you're going to then go into private practice upskilling, in different tools that you can use, what are the tools out there? How do I do surveillance? Do I need to do different developmental screening tools in my clinic? Do I need to give families questionnaires to fill in? You may have to upskill in those.

I mean, even as a community child health paediatrician, I didn't do my ADOS until I was practicing, because I had the skills, it's just an added—it’s still a tool. You still got to then use it to put it to the DSM-5 criteria. Because often I use ADOS when the case is a little bit more—not clear cut and you really want a tool that can help with that understanding of this social communication impact, which is what the ADOS does. But even an ADOS, that’s a lot of time if you're going to do it in private practice. That assessment can take up to an hour, two hours. It's much harder to do it in private practice, because to be really accurate in that you have to often be research-trained in it, which is further training in it. As a single clinician, that's then hard.

So I think from a College perspective, there are ways even with the CRC guidelines, a lot of it needs to come down to what is available for clinicians to use as single clinicians to help with their diagnosis and their formulation? What is out there for different things to be used? How do we train the next generation of paediatricians to be aware of those tools, what they mean how to interpret them? There’s a bit of work potentially to do.

MIC CAVAZZINI:               In the last episode I referred to an article from 2020 referring to wait times of two to ten months for a paediatric consult at Royal Children’s Hospital where you work, and just as long again for the developmental services. How much worse has the backlog gotten since the pandemic?

PAUL HOTTON: A lot worse. There's a significant increase in waiting times. I think, having worked at the Children's Hospital in Randwick where we've tried different models of care to reduce wait times, we've been part of different quality improvements to help families see, see a paediatrician earlier. We've done that, but our wait times have still increased. And they're up to sort of 14 months -15 months now for an assessment. I don't know if that's population growth, more awareness of the diagnosis, more clinicians referring in. It's actually hard to know. I definitely know there's more referrals than we can actually see as children based on how the services are set up.

We've had position statements even from governments looking at early intervention and screening children early. The problem with all screening stuff is, it's all well and good to screen but where are you actually going to send them? So if you're screening and you're identifying more, Where are you sending those children you've identified more of them? And the challenge of most then services even from a multi disc—so the second tier for the CRC guidelines—is those services haven't had further increases for 20 years. So their structures are based on the population 20 years ago, and haven't had increased funding into those services, especially in New South Wales.

MIC CAVAZZINI:               Yeah you can't just change one tile and we've touched on reimbursement—I spoke to a school psychologist counsellor in Newcastle, Scott Gould, who said that in trying to get a referral accepted by local paediatrician, they were told that the books were full, closed to developmental cases. And his impression was that the paediatrician didn't want to take on all that administrative burden because it was hard to get reimbursement for it.

This is reflected in comments that the RACP made to the Senate Select Committee Report on Services, Support and Life Outcomes for Autistic Australians published in March last year. I mean, I can quote something from there and you can tell me if it rings true. The second recommendation from the RACP submission notes that there exists only one MBS item number, number 135, for an ASD-related consult and that doesn’t do justice to all the complexity.

Quote “The RACP [recommends]; [1] Introducing an annual MBS item number that would allow an hour-long review of patient goals and needs, [2] introducing a stand-alone item number for transition to adult services, [and 3] allowing item numbers that exist for people with intellectual disability to be extended to adults with ASD.” And Professor Valsa Eapen and colleagues have also called for Medicare funding of group telehealth consults to bring together different specialties. Does any of that…?

PAUL HOTTON: Yeah, without a doubt. Even the 135, which was the Better Access to Autism—that was called the HCWA funding—that’s actually gone as an item number as well. So NDIS has removed that as an item number so it's even harder for people to access that number, and often, it only gave you 20 sessions in your life course up to the age of 14. You can bill it that that number, but you can only bill once with one paediatrician. So they hold that number, and only there you can refer them on to other services, you have to have the specific name of the therapist and you write to them to help access for that. That was that item number.

What most paediatricians have to do is there’s two item numbers. You get a new referral, which is a 132, it's 45 minutes or even less than that it might be even 20 minutes. But the GP then has to refer and they have to have a specific quote, now, to access that item number. Most paediatricians will only bill as a 110, which is one issue. So if you've got a child who's got sleep issues, plus developmental issues, that's two issues that you're trying to address in such a short time. So the item numbers really isn't reflecting any more what paediatricians are doing, especially as we move into a mental health space and looking after children with mental health. We're creating management plans, diagnostic, linking up to schools, therapists trying to sort of care for the whole child as a whole through their life course and the family. The items don't reflect that work. So if I was a paediatrician in private practice, I can’t bulk bill because I can't run my service on the amount I get from a Medicare item number. You're going to charge families which then has further inequities for families that can't afford paediatricians. And so I think there needs to be a greater work looking at the Medicare items, now. What does it reflect now that it did years ago?

MIC CAVAZZINI:               And so again, that's another sensible pragmatic reason why paediatricians is just referring on to…

PAUL HOTTON: Why paediatricians refer on to multi-disc services because of the amount of work and they're not billing for that. But also yes, paediatricians are probably closing books because the amount of work they're having to do, they just can't keep up with the demand. Most paediatricians—some work full time. But we have a predominantly female workforce which is amazing for paediatrics, but also from everyone's perspective in life, working part time is beneficial from life to work balance. And so, you know, if you're working three days a week getting paid three days a week, but you're having to spend the other two days away from your family to do paperwork, chase everything, it's not a work balance so people will start closing books because they've got to keep the balance of what they're doing manageable,

MIC CAVAZZINI:               And provide quality of care to the patients they do have on the books.


MIC CAVAZZINI:               Let's touch on the idea of surveillance. According to an audit published in the MJA in 2015 by researchers from La Trobe University the average age of diagnosis in Australia is four. Now those data are about a decade old, but they were incorporated into a metanalysis that found diagnoses came significantly earlier in Israel, the UK, and a bunch of European countries. What do you make of that comparison?

PAUL HOTTON: I think probably in European countries—having come from the UK—I think surveillance of children is much greater, with the system is quite different here in Australia from a public health perspective to a private enterprise. I think the diagnosis probably here is later because we probably have a longer wait times potentially the influence that as well. And so that combination of things impacts that. Most children with autism actually need a period of time of surveillance, which probably doesn't help families. But sometimes you see a child at the age of two, and you're not quite sure. They've got developmental issues, they may have autism, because it's such a spectrum, they may not. You need time to get intervention to see what happens to that child.

Likewise, you could be completely at four years of age saying this child's definitely not autistic, doesn't meet the spectrum. But as they get to school, the social demands of school means that they start to struggle much more about the social communication aspects and some of the subtle things that they had about restrictive and repetitive behaviour, which you didn't quite notice when they were younger, is more apparent as they're getting to school because the demands are greater for them. Social demand is so much greater, they've got more anxiety, so their behaviours are more present. So it's actually really difficult to know. Surveillance would probably be better for most children. So you see them get them intervention, you just follow them up over time. The difficulty is I'm not sure that’s actually from a parent perspective, or a carer perspective, helpful for them.

MIC CAVAZZINI:               Well, I mean, the idea of broad surveillance, developmental surveillance, it is in the blue book, it is in this National Guideline. But to have good surveillance, you need continuity of care. And I wonder if in Europe—so my aunt is a paediatrician in Italy—a child until they're six years old, only sees a paediatrician, they're assigned to the local paediatric service. In the UK, it's the GP but you have a “medical home”, you can't get outside that catchment. And it's true for adults as well. I wonder if in Australia, where we have a more, privatised, shop-around approach to primary care, it's harder to get good surveillance from the same clinician who's going to recognize changes in that kid.

PAUL HOTTON: Completely. Even the American system has got—all children then just follow up with that paediatrician, like they would a GP in a way. Watch Me Grow is now the new sort of surveillance tool for families to use, there’s different apps for them. But I think if you had a regular clinician that you were seeing, someone who could regularly ask things, see things, it'd be different. What we should be utilising is that primary healthcare network that we do have, so GPs, Child and Family nurses who are skilled in doing surveillance and screening. And we should be pushing for that surveillance to happen at the time points from the blue book.

MIC CAVAZZINI:               I apologise if some of this comes across as New South Wales-centric. I believe that Western Australia has a purple book, Queensland a red book and Victoria a green one. There are many important differences between the state health services but I want to share some important insights from Associate Professor Josephine Barbaro at La Trobe Uni in Melbourne. She’s a Principal Research Fellow at the Olga Tennison Autism Research Centre and a clinical psychologist who has been pioneering early assessment of ASD.

Josephine Barbaro told me that Victoria does come close to the Italian model I was talking about earlier. In that state, children are monitored to the age of three and a half by a paediatric practice, and then after that they stay with nominated child and family health service. When it’s not possible to see the very same specialist or nurse, at least the medical records are shared.  

Associate Professor Barbaro is not convinced that
Australia is lagging behind other countries when it comes to detecting autism spectrum disorder in the community. It was her team that produced that figure of four years, as the average age of diagnosis in this country. But we can’t be sure how consistently diagnoses were recorded in those international studies; she reckons that those with the lower ages of detection may be considering only the more profound examples of ASD and missing the hard-to-pick low level cases from their calculus. It’s been a consistent and predictable observation that more severe cases of ASD are diagnosed earlier in childhood.

Another confound that came to my mind was the age at which children get exposed to the social stress test of pre-school or kindergarten. When it comes to enrolment rates in early education for 3 to 5 year olds, Australia is a few points below the OECD average of 87%. [see also ABS] Meanwhile, in countries where early education is universally funded like the UK, Belgium, France, and Israel, enrolment rates are over 98%.

I’m painting with some broad brush strokes here, but I hope this highlights how many factors right across the health and education system can influence numbers like age of diagnosis and incidence. Diamond-hard epidemiological data are very hard to come by. Josephine Barbaro and her team used a registry from the Helping Children With Autism scheme described in the previous interview as HCWA. This was the predecessor to the NDIS Early Childhood Early Intervention program and a key difference between them is that under HCWA children up to the age of seven did require a diagnosis of ASD or pervasive developmental delay in order to receive funding, which would then carry on til the age of 13.

As a result, the registry data showed an apparent spike in incidence of ASD just before the age of six. In fact that was the most common age of diagnosis, but not because of any environmental factor that was causing more kids to develop autism at that age. It’s just that clinicians were making sure their patients would get HCWA support before the window for eligibility would close.

As I’ve already said, numbers alone don’t tell the full story. Josephine Barbaro, with colleagues Cathy Bent and Professor Cheryl Dissanayake, also conducted a qualitative investigation subtitled “What predicts an early [autism] diagnosis in Australia?” They recruited families from the HCWA registry over 2014 and 2015 of which 136 completed a survey about their healthcare journey. The results were pooled depending on whether the diagnosis came below or above the age of seven and there was considerable divergence in the experiences reported by the two cohorts.

Kids who were diagnosed early had first presented to health professionals around the age of two and a half, and it took a year, on average, to receive a diagnosis. For the older cohort, concerns had typically been raised around the age of four but it took on average 4 years and 10 months to received a diagnosis. While these older kids were likely those with less profound presentations, it doesn’t sound like there was a great deal of follow up was taking place. 39% of respondents had been told “not to worry” by clinicians and another third to “wait and see.” The average number of consults to diagnosis was eight, and only half of families noted that a developmental assessment had been conducted within the first three of those.

It would be interesting to know how clinical practice has changed since the switch in 2016 to the NDIS-funding model. Hopefully there has been less “wait and see” and a bit more early intervention. We can’t actually make an apples to apples comparison because the Medicare item numbers that the HCWA registry was based on are now obsolete. And we may have actually swapped one bureacratic driver of practice for another.

You see, the remit of the NDIS is described providing support for people with “permanent and significant disability” that helps them increase their “social and economic participation.” Within this framing, it is considered that only ASD levels 2 and 3 are profound enough to warrant government funding for children over the age of seven. Children with ASD level 1 might make the cut if evidence can be provided of significant needs in other domains, but it takes a lot of work to get those reports and you’re not guaranteed a result. I’d heard that clinicians were now tending to be a bit liberal with level 2 diagnoses in order to help families access the NDIS, so I asked Paul Hotton for his thoughts.

PAUL HOTTON: Yeah, and even as a clinician, I probably do that sometimes as well. I think because autism is a spectrum, it fluctuates on a day-to-day basis, and these levels are arbitrary levels. So of course, you're going to adjust them, if you really think they need some behavioural support, you're going to adjust the diagnosis. That is what clinicians are likely to do.

MIC CAVAZZINI:               Yeah. Professor Eapen even joked to me that this threshold within the NDIS “has wiped out autism level one from the face of Australia.” Whatever we agree on about this bureaucratic model, it is concerning, isn’t it, that clinical decision-making and even epidemiological data are getting distorted by the red tape.

PAUL HOTTON: Yeah, and that wasn't how the levels were originally designed, in the DSM-5, it was actually about what the function of autism was doing.

MIC CAVAZZINI:               Well, in the DSM, it still says level one requires support. That’s in the manual.

PAUL HOTTON: Yeah, that's about how much support. And we've made a decision that 1 just needs enough in community health settings, like you can use the Mental Health Plan for that. And it's like well, who can't actually then access the therapists because they all want NDIS, potentially, and you've got different wait times how you can access And then the problem with NDIS is it's a yearly sometimes two-yearly renewal—that level could have fluctuated in that meantime, as well.

MIC CAVAZZINI:               Yeah. And if they're sort of palming it off to Medicare, well, it's still Commonwealth funding, whichever pot…

PAUL HOTTON: Whichever pot you take it from it’s still a pot, but there needs to be support. But the NDIS then doesn't have the families out of pocket, although the money might not cover everything. Whereas in Medicare items. There's still a gap that families have to pay, it only gives you a certain proportion back so they still need levels of support.

MIC CAVAZZINI:               In my friend’s case, the kid, Jack, is quite bright, he's a good reader. But he is really unsettled—ADHD—doesn't like to sit in class, wasn't responding to the speech pathologist that they were getting from Early Childhood Intervention. But he did respond very well to medication for the ADHD. You could say, well, that's PBS-subsidised. Is that enough? Is that the Commonwealth supporting the needs of this child? To an extent, yes, but might be more complex than that, I suppose.

PAUL HOTTON: I think that's where people find levels hard to decide on children around specifically around autism. Because children come with neurodiversity. So a lot predominantly a lot of children with autism have ADHD and anxiety as the principal conditions that go hand in hand sometimes with it. So that ADHD or anxiety may be influencing the autism, but actually from a level perspective of function, just if you focus on the autism, they may be level one. But if you add in the ADHD and anxiety, that behavior is being influenced by something else. So do you get them a level two because they actually need more support around it? Do you not?

MIC CAVAZZINI:               They might get a Mental Health Care Plan for the anxiety, they might get PBS-subsidized drugs for the ADHD. But is that enough in the whole picture? Or do you need one plan from the NDIS?

PAUL HOTTON: And is that right for families to be trying to access from different things. Not really understanding what's needed. It becomes a really complicated system for families to understand. And I'm an advocate for NDIS. Because I think the purpose of it was a really good holistic purpose to access—and you should access intervention based on your severity of need. So rather than everyone get the same lump sum, it's based on a needs-assessment. But then there's the fundamental implementation of it for services, how you govern different therapists who charge different prices for different areas. How do we justify, you know, if you live in the east of Sydney, do you get more money or less money, your services may be more expensive, less expensive than the western area, and we create ongoing equity in division of our state as a whole. I think most families I see the struggle, once they hit seven, to write plans for themselves, to write really comprehensive plans to get the right funding for their child. Despite having sort of local area coordinators that are meant to try to help families deliver that.

MIC CAVAZZINI:               You can sort-of understand why the bureaucracy is the way it is, but it doesn’t make things easy for people who are already in a lot of strife. I do want to clarify one misconception though. The NDIS does respect a single-clinician diagnosis of just as much as one from a multidisciplinary team. In fact, it was the administrators of the NDIS who commissioned the Autism CRC to develop the Australian Guideline. They were trying to lower the barrier to entry, but perhaps they didn’t know what they were in for. If I’m not mistaken of the 502,000 participants currently enrolled in the NDIS about 120,000 are living with autism which is 24%. Does that sound right?

PAUL HOTTON: Yeah that’s probably about right. I think probably when people were doing this they didn't quite work out how much it was really going to cost as a delivery when they brought out NDIS what was going to happen from growth of a population. I also think there's lots of ways to think about autism. Why has it become more common? Why is it higher here? What's the epigenetic inheritance of autism? Has that played a part? Is there something around living in Australia? It's huge, but I think we're not quite understanding how much there is out there, to then then how much supports are being able to access for families. And then the funding, an easy way to delineate funding is to say, well, level 1, you only need a little bit of support, so it's not a disability.

MIC CAVAZZINI: I mean, this is all over the news these days. The NDIS as a whole is expected to cost $59 billion dollars a year by 2030. That’s twice what it’s costing right now, and four times what had been predicted at its inception a decade ago. So now we hear stories in the media about more delays to access and cuts in funding to recipients who had become reliant on certain supports. I don’t have an easy answer for the administrators but there also the cost of inaction to consider. So Professor Eapen pointed me to an economic analysis commissioned by Telethon Kids on what they call “the Cost of Late Intervention”. It showed that the government spends $15bn a year on crisis services for youth mental health, family violence, homelessness, unemployment, justice and so on. It didn’t mention autism specifically, but even for lower level ASD, you could do that analysis; the lost productivity of these kids…

PAUL HOTTON: There's a whole heap of research that looks at this in particular, an inverse law. So if you don't put any intervention into children then they present him with mental health difficulties later on, which costs us more, costs us the burden on further aspects of their health in a way, more disadvantage for them, more difficulty accessing jobs, financial difficulties, social determinants of health, so there's a greater cost. And the problem is in the health system, we are always about crisis managing, let's put a BandAid on a service but what you're not doing is the backlog of children who are about to come through. And we just keep putting more and more bandage…

MIC CAVAZZINI: We'll pick up the tab later, later on.

PAUL HOTTON: We’ll do it later one. I think that's the difficulty with governments and change of governments, different cycles, you've got different states here, all of that impacts on then what happens to children's health. If you invest early, and you put loads of money into intervention really early on, the long-term benefits will mean you get your money back.

MIC CAVAZZINI: I mean, I haven't read the 2019 review of the NDIS by David Tune AO which had 29 recommendations for making access to the scheme more equitable and decision-making more transparent. But is there anything we haven't touched on specifically around autism that you'd like to throw in?

PAUL HOTTON: I think it’s—the question was the CRC guidelines, I think they are good guidelines. They are good guidelines, it's then about thinking about how you implement those. What needs to be there for it to happen? Because I actually think I actually do think single clinicians can actually do a lot of work in that in that early stage. Not all children need to go to diagnostic services. So you reduce that wait time potentially. But if we're not going to support that single clinician with right Medicare billings, right supports, access to reports, then this guideline is never going to be implemented.

MIC CAVAZZINI:               Before I go I just want to address Paul Hotton’s open question of how much autism spectrum disorder is really out there. Josephine Barbaro thinks it could be up to 5% of the population based on outcomes of a study she and her colleagues have just had published in JAMA.

For over a decade they been refining an autism screening checklist called the Social Attention and Communication Surveillance tool or SACS. The recent paper examined the diagnostic accuracy of a revised format of the SACS and a pre-school-specific tool in a large community-based sample.

Over thirteen and a half thousand Victorian children underwent the screen at least once during routine health visits to a maternal and child health nurse during their second year of life. Positives on the screen were then referred to a clinician for a standard diagnostic assessment, and many negatives came back for follow up screens up to the age of four.

Sensitivity of the SACS-revised was modest in the first iteration, but increased to 96% when that last screen was taken into account too. Prevalence of ASD by pre-school age was determined to be 3.3% but Josephine Barbaro says it would be closer to five once all false negatives are considered and those diagnosed late as adults.

The most remarkable finding from the study was the fact that the average age of diagnosis in this community setting was under the age of two. This is two years sooner than what’s currently occurring at the population level in Australia. And just as important; not one child flagged positive by the screen was found to be developmentally neurotypical on diagnostic testing. The majority met criteria for autism spectrum disorder but other syndromes of developmental delay were also detected.

With specificity at almost 100%, Josephine Barbaro said this should put to rest fears about widespread use of screening tools for ASD. In the last episode I mentioned how screening had been debate in the drafting of the 2018 National Guideline for Diagnosis of ASD. The RACP had been one of several voices to raise concern that ASD-specific checklists weren’t used consistently, they lacked diagnostic accuracy outside targeted settings, and that the high rate of false-positives would cause unwarranted stress to families. A triaged model was adopted instead, whereby non-specific developmental screens were recommended, and these might then lead to a referral for diagnostic testing for autism.

Associate Professor Barbaro argues that primary healthcare staff can be quickly taught to administer the SACS. Their expertise means the checklist isn’t as easily tripped as others that rely on self-report from families, like the M-CHAT, the BRIGANCE or the BIT-SEA. Josephine Barbaro is keen for paediatricians to adopt this as a first-line tool for when receiving referrals with developmental concerns and says it would give them confidence in managing these patients. But to detect cases even before families have concerns, she insists we need to make better use of maternal and child health nurses. We already have community health centres in most regions but they are underutilised by the public. Josephine Barbaro says that this would be a more impactful strategy than to try and get GPs to squeeze more into their already jam-packed consults.

If this advice does get adopted, I suspect it will be at a local or state level before it makes its way to the next national guideline.
This podcast more than most has reminded me how many moving parts there are to the machinery of healthcare in Australia. Many thanks to Josephine Barbaro and Paul Hotton for their patience answering all my questions about how these fits together. The opinions presented are their own and may not represent the official position of the Royal Australasian College of Physicians.

As ever, I’m grateful to the members who gave up their time to review drafts of this podcast. They’re named at the website along with all the musical artists you’ve heard. The address is racp.edu.au/podcast, and you’ll find lots more reference material linked there too. If you go to elearning.racp.edu.au you can browse all the latest
online resources developed for you by your peers and the Professional Practice team. Recent additions are a reading library on medical standards for driving, a self-paced course on supporting Aboriginal and Torres Strait Islander patients through genomic healthcare, and another on quality and safety in rural medicine. And don’t forget the massive lecture library called the College Learning Series, that’s mapped to the training curricula of both adult medicine and paediatrics.

I’m Mic Cavazzini and this podcast was produced on the land of Gadigal people of the Eora nation. I pay respect to those storytellers who came before me.


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18 May 2024
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