Are we getting autism diagnosis right?
Airdate: 
Tuesday, May 23, 2017 - 20:30
Channel: 
SBS

When a child is slow to walk and talk, alarm bells can start to ring for mums and dads who know instinctively that something is not right.

In many cases, concerned parents are comforted by doctors who say it’s nothing serious and all children develop at different rates.  And perhaps the child goes on to grow up normally.

But for some children, these developmental delays can be the first signs of something that can stay with them for life.

Getting an autism diagnosis can be a confronting experience for a child.

Cain Noble-Davies, 22, was just seven years old when he was diagnosed with autism, but he remembers it like it was yesterday.

“The immediate question that came into my head was, ‘what’s wrong with me?’

“Being told right there that there is something that objectively makes you different from most other people is pretty hard for a kid,” he tells guest host Sarah Abo on this week's episode of Insight

The impact of an autism diagnosis is also felt by parents.

For some, it’s a welcomed answer to difficult behaviour or even aggression from their child in their early years.

When Cain’s mum, Gretchen Broer, was approached by the school principal who suggested Cain might have autism, she jumped at the opportunity to get an answer.

“I grabbed that with both hands and as soon as I could, made an appointment with a paediatrician and it was a very short process of diagnosis.”

For other parents, it’s a devastating prospect that their child may not be like other children, and their doctors don’t really know why.

Josephine Akel’s five year old son was diagnosed with autism recently, and she questioned if his autism was her own fault.

“I thought I had done something wrong, either the way I’ve raised him … or my health. I did feel guilt that I had done something.”

For some, an autism diagnosis is the only way to get much needed funding for their child’s needs.

Peta Hanney’s daughter has a rare genetic disorder which results in symptoms very similar to autistic traits, but is not recognised under the current funding system for disability.

She was told the only way she could get government assistance for her daughter’s developmental problems was by getting an autism diagnosis.

It was just a ticket for us… we'd already been through five years of keeping this child alive, a piece of paper that was going to help her at school was pretty much all it was."

Paediatrician Dr Michael McDowell says the current disability funding system is unfair, and does not recognise other developmental problems children suffer with and desperately need funding for.

While the system has problems, Michael believes that parents and doctors are just doing the best they can. 

“Parents just love their kids, and want to help their kids, and to some extent the diagnosis gives them an explanation … but it's more than that, it's a pathway.”

This week Insight looks at what an autism diagnosis actually means - for individuals, for families, for clinicians, and for the healthcare system.

Credits

  • Presenter: Sarah Abo
  • Producer: Amanda Xiberras
  • Associate Producer: Nicola McCaskill

Transcript

SARAH ABO:   Welcome everyone, thank you all for being here. Cain, I'm going to start with you, you were diagnosed with autism when you were seven years old. What was that like? 

CAIN:  What's wrong with me? Because just being told at, you know, an age when you're still trying to figure out what identity even means, let alone what your own is, being told right there that there is something that objectively makes you different from most other people is pretty hard for a kid.

SARAH ABO:   What was the most difficult part with growing up? Was it being in school? 

CAIN:  Yeah, it would have been what I'd call socialising at gun point pretty much because it is genuinely difficult for me to socialise even at the best of times because I am not that good when it comes to reading social cues, especially when it comes to reading emotions off of other people. Like I often misinterpret things, assume they're speaking in one tone when they're really speaking in another and then just general awkwardness not really knowing what's, quote, unquote, appropriate for certain situations. 

SARAH ABO:   How are you feeling now? 

CAIN:  Um, right now I'm, honestly I'm perfectly comfortable with the fact that I have autism because I have, you know, gone past the point where it's, you know, it's something different or even something wrong.  It's just, I just see it as a different way of looking at the world, so actually having that information, like yes, this is what you have, this is how you might act, you might not act, actually having an idea of, you know, why I am the way I am definitely made things a lot, well not a lot easier but a bit easier. 

SARAH ABO:   And what about friendships or relationships? 

CAIN:  Part of the misreading social cues thing is more times than not I've often made more out of certain relationships than actually happened. When I was, well supposedly seeing this girl and I made  the relationship out to be a lot more than it actually was and I was actually creeping her out quite a bit and it got to a point where she officially just said okay, back off, and that did traumatise me quite a bit.

SARAH ABO:   Gretchen, you were sixteen when you had Cain. When was it for you, that you noticed something might not have been quite right? 

GRETCHEN:   I suspected there was something amiss probably around the age of three. He had a significant speech delay. He was also very not aware of danger or risk. He was not able to toilet train, and I took him to a paediatrician at the age of four. He was diagnosed with semantic pragmatic disorder which at the time the word autism never came up. I didn't know what that even meant. So when he started school in kindergarten he had a lot of trouble communicating, verbally communicating, he was quite aggressive in his early years. Parents would confront him as a small child, reprimanding him. I had a woman dive in front of my car when I was pulling out of the school car park to abuse me that Cain had ripped one of her children's hats. It just, it was a nightmare. 

SARAH ABO:   It sounds like you…

GRETCHEN:  I felt totally isolated and Cain was totally isolated at school in the early years. 

SARAH ABO:   And Cain was eventually diagnosed with Asperger's which is of course now recognised as autism spectrum disorder. How did that diagnosis come about? 

GRETCHEN:  Um, Cain was seven years old and I got a call from the school saying that I had to go up there very quickly, that there was an emergency. And of course I quickly got up there and to find out that Cain at seven had written a suicide note and jumped off the second storey building at school and, um, and a few days later when the things had settled, I went into the school on my own and met with the principal. He said, um, I think Cain might have Asperger's and I had never heard of Asperger's before, made an appointment with a paediatrician, took him in and it was a very short process of diagnosis and that was, that was how we got our diagnosis at the age of seven. 

SARAH ABO:   Josephine, your five year old son was recently diagnosed with autism?  What made you go to the doctor initially? 

JOSEPHINE:  Well at about three and a half we decided to go see a speech therapist because he just didn't seem to be where I thought he should be and after about four, five months, she said you should go see a paediatrician.  So we went and he said he shows mild signs of autism and probably developmental delay and, yeah, it just, it went from there. 

SARAH ABO:   What was it about his behaviour that worried you most? 

JOSEPHINE:  His speech and probably his ability to control his emotions.

SARAH ABO:   And what was the reaction when you found out? 

JOSEPHINE:  I was very emotional.  I did feel, I guess, guilt in a way that I had done something... 

SARAH ABO:   And how did your family react as well? 

JOSEPHINE:  My mother said, oh, those doctors don't know what they're talking about.  He's fine and it's pretty much the reaction from both our sides of parents. They're both immigrants from different countries so older generation, you know?

SARAH ABO:   Amy, I'll come to you now.  You're 25 now, you were nineteen when you were diagnosed with Asperger's syndrome. 

AMY:  Yeah. 

SARAH ABO:   How did that come about for you? 

AMY:  Years of absolute stress and being in and out of doctors' offices pretty much growing up and being told, you know, anything and everything under the sun that wasn't Asperger's syndrome. But eventually we were able to sort of come to terms with it before I was diagnosed, just through interactions we had with friends and their families and some of the things they were saying about either themselves or their kids, it was just really clicking in my parents.  And so when, one night they came to me, I think it was about seventeen and we were like okay, looks like this is what's going on with you. And when I read up on the symptoms, it, it was a bit of a light bulb moment of oh, my gosh this makes sense. 

SARAH ABO:   So going through high school and not quite knowing if something was up, how did you feel through that period? 

AMY:   It traces back to when I was even a little kid. I knew from a very young age that I was different and I hated it because I was excluded almost entirely. Primary school was where it got really bad, teachers, they just didn't know what to do with me so they just put me on detention all the time which I actually made almost all my friends there.  But I was the number one target in my year when it came to the bullies and I'm not talking just name calling and that. Um, I was beaten up, I even had furniture thrown at me in the classroom and I didn't understand all the unwritten social rules that somehow I was bringing it on myself.

And, um, it was a similar situation to Cain actually because, um, I remember one time I was at a road near my school, there were a set of traffic lights, they were red, they were about to go green and there was a truck and I just remember thinking to myself if I just step in front of that truck it will be over. I was nine years old. No kid should want to be dead when they're nine, ten, eleven, twelve years old, none. So I was very depressed.  I had no friends, no, absolutely none.

SARAH ABO:   So did you actually seek out Asperger's?  Was that sort of something that you were looking for? 

AMY:  No, we were just looking for answers, we were just looking for answers and I think at one point in the late '90s or early noughties mum had suspected Asperger's when she first heard about it but very quickly that was shut down because oh, girls don't get that. That was the attitude of, that was the attitude at the time and, um, I mean Asperger's syndrome had only entered the DSM when, after I was born so of course it took a few years for the medical world to catch up and even then they were still at that mindset of autism is a boy thing.

SARAH ABO:   And Marcelle and Stephen, what was that like for you, that diagnosis? 

MARCELLE:   It was a relief which sounds strange but, um, it just confirmed what we'd been suspecting all along and when you're constantly told by doctors, you know, ones who are much smarter than you, no, she's just clumsy, she's just a bit socially awkward, a bit of a chatterbox, that's it. So you go away for six months a year and then the things at home happen, like it's very stressful.  Families that have autism in the home, it's really, really stressful if they don't have the strategies to deal day-to-day. But that's just the beginning, the diagnosis is just the beginning. But at least you know what you're working with, you know there's a path ahead and yeah.

STEPHEN:    When we got, um, the diagnosis Asperger's we had tools in the toolbox that actually worked, and that was the thing, suddenly there was this de-stressor where you would do things and they'd respond. Simple things like pragmatic language had to be removed. You couldn't say would you like to clear the dishes because they'd just sit there and go, no, and keep talking around the table and all your guests would look at you and then you'd go Amy, clear the table.   So it's a huge relief when you get the right diagnosis. 

SARAH ABO:   And Amy had a hearing impairment as well, is that right? 

MARCELLE:   Yeah. 

SARAH ABO:   Did that impact the situation at all? 

AMY:  Sure enough because they would put a lot of the difficulties and social situations down to well, you know, you just make sure people repeat themselves and then she'll understand because she'll hear it and it's like yeah, but they did and she still didn't get it. She heard us but she didn't get it, yeah. 

SARAH ABO:   Well let's take a look now at how autism is diagnosed because it is complex. 

 

VIDEO PLAYED. 

 

In 2013 the diagnostic criteria for autism changed. Four different diagnoses, including Asperger's disorder, were grouped together and now fall under the broad collective term autism spectrum disorder or ASD.

During a diagnostic assessment experts look at the way children play, the way they respond and how they interact with others. They also take a family history and check the child's speech and development.

But there's no consistent diagnosis process across Australia. Different states have different requirements. A recent survey showed that not all paediatricians followed current recommendations for diagnosing ASD. 

 

SARAH ABO:   Michael, you're a paediatrician, is diagnosing autism clear-cut? 

MICHAEL:  Obviously it's not and I do feel the need to defend our profession. So if I can ask you to take the perspective of a medical specialist, we go through specialist training and our orientation is around biological health, so we learn about asthma and epilepsy and the other diseases, I suppose, of childhood. And autism is, and other developmental disorders are a completely different type of phenomenon.

The manifestation of them is in behaviour and developmental skills and you know, responses to situations. It's not rashes or lumps or, you know, difficulty breathing and things like that. So it's a very different tool kit. And so I think to some extent the profession is just playing catch up and, you know, basically we weren't prepared for this and we're learning on the fly. 

SARAH ABO:   So having listed those other conditions, how do you then diagnose autism specifically? What are you looking for? 

MICHAEL:  I think your summary gave a good explanation.  There's a set of criteria out there and you need to gather sufficient evidence to actually say yes, those criteria fit.  And, as they pointed out, there's a lot of diversity about how this happens but again the context I think creates the diversity.  So if you're a single paediatrician in a country town, you don't have a multi-disciplinary team available to you so you do the best that you can and you might get information from the school and family history and so forth but you have to deal with what you've got, whereas if you're in a big city hospital you've got a much larger opportunity to get information. So it happens in different ways in different places. 

SARAH ABO:   So if we take Queensland as an example, what's needed there to make a diagnosis? 

MICHAEL:  Um, well, if I take it to its very essence, a signature on a piece of paper. So there is no, we have to sign off that the child meets the DSM-5 criteria.

SARAH ABO:   Nicole, you're a clinical psychologist, you've assessed hundreds of children for autism. Can you always be sure it's autism? 

NICOLE:  By its very nature, clinical diagnosis isn't, isn't something you can be sure of because there's no blood test, there's no x-ray, there's no brain scan, so it's a clinical decision making process. With DSM-5 as the criteria and the gold standard being the multi-disciplinary assessment, so involving speech pathologists, involving paediatricians, sometimes child psychiatrists, so it's a multi-disciplinary team effort and together with a group of expertise, and I think that's the part that's come out of the family stories is that there are so many stories who don't have the expertise to be able to diagnose and therefore children get misdiagnosed, or under diagnosed, or diagnosed with something else. And there's not enough research, there's certainly not enough research on girls. 

SARAH ABO:   Andrew, you're a child and adolescence psychologist researching autism in Australia. Is the diagnostic process consistent from state to state? 

ANDREW:  Look, I think the best word to use is muddled between states. We have certain states, Western Australia is a good example, where there's very strict multi-disciplinary diagnosis with a paediatrician, a psychologist and speech pathologist have to come together and have a consensus as to this child or this adult meets criteria for autism. But as your graphics show, there’s also other states out there that rely on a sole clinician. It's a challenging situation for sure.

It's not just different differences between states however, within states is also a challenge. If we think about what, what the government departments that deal with autism, we've got three. And you might think that helps but it doesn't. It means that autism slips between the cracks.  We have disabilities, health and education. Now if we have eight different states and territories, each with three systems, plus the Commonwealth system, that's twenty five different systems that often have different interpretations as to what autism means.

And this is a massive problem because we could all sit here and tell you stories of families who've moved between states and they've had to go through another expensive, lengthy and emotionally training diagnostic process. People who stayed within the same state and transitioned from health to education and have to go through another diagnostic process, it's just ridiculous. 

SARAH ABO:   What about who can diagnose?  I mean that's another one, is that consistent across the country? 

ANDREW:  No, it's not consistent across the country and this is just part of our beautiful federation of states where and of course where we have different systems who are generating different policies.

SARAH ABO:   Michael, after hearing all of this are we getting it right? 

MICHAEL:  Um, I'm going to put a controversial point of view across. The emphasis is on whether we're diagnosing autism correctly or not, and I'd like to change the conversation a little bit, are we understanding children correctly? So a child comes in and they have a situation, a plight, a set of concerns. My fear with all of this is if we focus on autism, I've seen situations where a child goes into an autism diagnostic service, they've waited a year to get into it, they've gone through probably $10,000 worth of assessment and they come out with no. Okay? The child still has a problem. We don't know what's going on so if you have an assessment service that almost presupposes the outcome of the assessment service, I think we're making a big mistake and my preference would be to go right back to core principles, kids struggle, we need to understand their struggle.  We need to understand them if we're going to help them. 

 

VIDEO PLAYED.

 

Autism diagnosis in Australia has risen 25 fold in the last fifty years with different rates in each state. In the 2012 survey Victoria had the highest diagnosis rates in the country. Since 2012 national diagnosis rates have continued to rise over 42 percent to about one in every hundred children. Four out of five of those children are boys. 

 

SARAH ABO:   Andrew, that 42 percent increase in autism diagnosis since 2012, it's a huge increase, what do you put that down to? 

ANDREW:  Look I think the scientific evidence is really shaping up pretty well on this one.   We know that if you're born extremely pre-term you're at an increased risk for being diagnosed autism and of course fortunately nowadays, kids who are born extremely pre-term do survive and so we're seeing an increased rate of kids with autism. But also there is a large sociological component to that increase in the prevalence. So first and foremost there is an increase in the awareness of autism and that's not just amongst families, it's also amongst clinicians who realise that autism can manifest in different ways.

And the other one, and I think it's beyond question now, is that there are policies that have been created by governments that do contribute to the increasing prevalence, particularly applying resources and funding to a diagnosis. Now I need to make clear here that I'm applying no value judgment on this whatsoever. What is all too common is families who come in with a child who is developing super differently and we look at that child and we go something's going on there. We do an autism diagnosis assessment but the child doesn't quite meet diagnostic criteria.  The family doesn't have means but we know that if that child receives a diagnosis of autism, they will get the support and that family's life will change forever. It's Sophie's choice that happens every day. 

SARAH ABO:   Michael, why do you think we're seeing this increase? 

MICHAEL:  I agree with Andrew that the, the energy from government and its government through early intervention and through educational systems, basically says we will help this child if they have an autism diagnosis when they're that that grey zone of complexity and uncertainty.  To say that it's a yes or no diagnosis is incorrect and I think the systems are driving us into that.  So, the idea that you can nail it and get it right or wrong I think is completely incorrect.

SARAH ABO:   Is that parents feeling a desperation that doctors are sensing? Is that the reason there's been an increase and they're more willing to sort of give out that diagnosis? 

MICHAEL:  Look, parents just love their kids and want to help their kids and to some extent the diagnosis gives them an explanation, as we've heard, but it's more than that, it's a pathway. If there is a system that says I don't care what the label is, just understand my child, care for my child, make sense of the weirdness of their behaviour and have a compassionate response rather than a judgmental response, they'll go for it. 

SARAH ABO:   Is it doing more bad than good though? 

MICHAEL:  No, I think it's doing good but I think we're on a learning curve, if that makes sense. My only fear is that we prematurely jump into the band wagon of autism rather than just go slowly and say let's just understand children. It's definitely true that children struggle. I think it's a mistake to just leap in and say everything's autism. We've done that before in medicine, we've had a history with ADHD where every bad kid had ADHD, and a large number of kids ended up on Ritalin that may or may not have needed it because we just leapt into a diagnostic category too quickly. 

SARAH ABO:   So are we over diagnosing? 

MICHAEL:  That's a hard question but I think there are some kids where it might not be in their best interests.

SARAH ABO:   Lara, you have a ten year old son and a seven year old daughter who both have been diagnosed with autism. Your son's diagnosis was relatively straightforward.  What happened with your daughter? 

LARA:  Completely different story and I knew this was going to happen but that's okay. When my son was diagnosed, we'd been smashed with that and so we got through that diagnosis and we needed to deal with him first. So it was about twelve months after his diagnosis that we started. That to me should have been long enough to get it sorted out, get things in place for her before she started school.

She was in kinder with kinder teachers who, I believe, have absolutely no idea about anything that wasn't classical autism. So we weren't getting any third party or independent observations of her.  The speech pathologist conducted a couple of sessions with her and my daughter is a brilliant mimic, that's how she understands and processes her world. She'd been to assessments with her brother, she knew exactly what to do.

SARAH ABO:  So what did they say to you, what did they say the problem was?

LARA:  I've got a psychologist who is not available at the meeting and I've got a speech pathologist saying everything you're telling me about my daughter I'm not seeing. She came in and she said hello, she interacted with me, she answered my questions. Yes, she came into your office and she performed beautifully because that's what she does. So with the psychologist who is not there, a speech pathologist who says look, this just doesn't measure up, the paediatrician just said look, can't do anything at the moment, and I have heard stories like those tonight of those young women who get to their teenage years and depression comes up and I did not want that. I could see it, I could see that path and I did not want that for her.

So I went to Melbourne.  And a clinician sitting there saying I have no idea why I have you sitting in my office because she is so clear-cut, she is that girl that watches what everybody else is doing because she doesn't understand it and then she mimics them. So she looks like she's fine. 

SARAH ABO:   Do you think it was more about doctors getting the diagnosis right or was it just frustration because you could see it and they couldn't? 

LARA:  There was, I suppose there was a couple of parts to it, frustration because there was so points where it really felt like I was the only one seeing it. But I think because we're in a regional area, the providers that we're dealing with just don't have that expertise around those differences between the boys and girls and if you're trying to compare her against that model of a boy, she doesn't fit the boy's model but she definitely fits that girl's model. 

SARAH ABO:   Were you actively seeking a diagnosis and why?  

LARA:  I think we were all being deprived of a really good relationship with her because, she would come home, she'd lose it at me. At that point I didn't have the full understanding that it was her exhaustion and I'd walk out of the room. She's busy yelling at me and I would, I would walk out of the room because I couldn't put up with it any more. So I knew that if we didn't have some way of understanding her better, you know, she's six and seven, just wasn't going to have a good foundation. 

SARAH ABO:   We know that for every four buys diagnosed with autism, one girl is diagnosed.  Why do you think there is such a big difference? 

MICHAEL:  In general because boys are more annoying, and particularly when they're a little bit different from average the level of annoyance is much larger and I think temperamentally, and I'm generalising quite heavily, the girls are less annoying. And I suspect, just like ADHD, as time progresses, we will understand that the actual truth is more equal than one in four. 

SARAH ABO:   Gretchen, I just want to come back to you, Cain is the eldest of your four boys, they've all been diagnosed with autism? 

GRETCHEN:  Mm-mmm. 

SARAH ABO:   How did you approach getting them assessed compared to Cain? 

GRETCHEN:  Well, when my second child was, I suspected autism really early but I didn't say anything to anybody, just because I wanted to observe it and see what happened. But by eighteen months I knew for sure. I didn't tell my husband, I didn't want to panic him, and I also didn't want to be responsible for a genetic situation that, um, could have possibly been my fault. So I just kept it quiet and when he was diagnosed just before three, I was already pregnant with my fourth child.

So when my third little boy was two, I knew and that was very, very quick. I basically walked into the paediatrician who we were already seeing for my second child and said well, he's got autism so just quickly sign off so we can get, so we can get started with our early intervention and let's just get on with it and not waste any time.  And didn't exactly work that way unfortunately, he did have to go through the process and with my fourth child he was very different to the rest. He was verbal early, he was social, had three other brothers, copied a lot of things.  I, I knew he was autistic.

SARAH ABO:   So armed with that anecdotal evidence, were you actively seeking an autism diagnosis? 

GRETCHEN:  Yes. When I, when I came to the realisation that that's what it was, and by the fourth child I felt that I was a professional at it,.

SARAH ABO:   Why was it so important to you? 

GRETCHEN:  Um, totally funding related.  We wanted to access services specifically for early intervention and not just speech therapy and occupational therapy but family support. So it was all really just for, to be able to access services and help, that was it and it didn't mean anything to me otherwise.

SARAH ABO:   Talk me through an average day in your household? 

GRETCHEN:  Well, people sometimes say to me oh, my gosh, you're amazing, you know, you're a single mum with four autistic children, you're incredible, and I always say no, there's an army of people that make this happen. My mum quit her job to become a full time carer a couple of years ago. We have help. We have a lady that comes every day to help feeding, toileting, bathing, bed time, you name it, it's, everything is a production. If I didn't have that support and help, it would actually be impossible to do. Impossible, would not be possible. 

SARAH ABO:   Josephine, what was it like for you and your family? How did your husband react to the diagnosis? 

JOSEPHINE:  It was very emotional for him. I guess he didn't want to believe it and I think had to do as well, he comes from a Turkish background and I do think for both of us there is some sort of, I don't want to say shame but there is that stigma, don't want to talk about it.

SARAH ABO:   Would that make life easier for you being able to tell people about your son's condition? 

JOSEPHINE:  I'm not sure it would but the reason I'm here is to sort of get that out and you know, come forward with it a bit more.

SARAH ABO: What about your family Josephine, aside from your husband, your own family? 

JOSEPHINE:  I don't talk to my dad much about it. I think it's, that he just has so much love for all his grandchildren and to think that something might impair his life, his future, it's hard for him so I try to avoid that. My mum, it sort of became the same thing.

SARAH ABO:   Was it something they just weren't familiar with? 

JOSEPHINE:  Yeah, obviously even for my husband's parents to try and explain in Turkish to his dad what it was and, because my parents in their late 60s, 70's, so back then it would have been oh, the kid's naughty or not disciplined and yeah. 

SARAH ABO:  Why do you think your parents associate the condition with a stigma? 

JOSEPHINE:  I think it's just culture really, it is.  They grew up in South America and yeah, I think it's something might be wrong and nothing is wrong with him. It's hard to find a fine line in that. 

SARAH ABO:   And we know that support is pivotal in families with these, where children have these conditions.  Lara, were you able to get funding for your kids once they were diagnosed? 

LARA:  My son got the full funding package. My daughter we had to put in a bid because she was out of time so we had to put in a special request for her and she got about half and we had about four months in which to use it so that was pretty complex. 

SARAH ABO:   I might just ask you, what does it mean when you say she's out of time? 

LARA:  So they have to be diagnosed by the age of six for the early intervention funding and she wasn't because it took about eighteen months to get her through.

SARAH ABO:   Gretchen, did you get funding for Cain? 

GRETCHEN:  No, I didn't get any funding for Cain, there was no such thing when he was diagnosed or even services, there was nothing. 

SARAH ABO:   What about for your other sons, did that change? 

GRETCHEN:  Yeah, well it did and that was my, you know, the reason why I pushed for the, I wouldn't say I pushed for it, they were going to be diagnosed regardless, but I was anxious to get the diagnosis as soon as possible.  I have accessed every conceivable service for them and for myself.

SARAH ABO:   Let's take a look at how funding works now. 

 

VIDEO PLAYED.

Getting a diagnosis means access to funding. This can be spent on government approved services and treatments like psychology and speech pathology. The Helping Children with Autism package was introduced in 2006. Kids with a formal diagnosis can access $12,000 of funding up until their 7th birthday.

That package is now being replaced by the NDIS which will provide lifelong support, individualised to a person's needs. The NDIS is rolling out across the country and should cover everyone by 2019. Currently 28 percent of all NDIS participants have autism making it the second largest disability group in the scheme. 

 

SARAH ABO:   Michael, what do you think about the current funding model? 

MICHAEL:  We've already heard conversation that it biases diagnostic judgments in situations of uncertainty so, you know, we just try and help kids the best we can under the current funding model. I also have the problem of seeing kids who don't meet criteria for autism who have really high level special needs that don't get help and in my heart I just think it's an unfair system.

SARAH ABO:   Do you see parents who are actively seeking a diagnosis to try and alleviate the pressure on them? 

MICHAEL:  Oh, absolutely, and as I said before, parents just want to help their kids and you know, it's a slightly questionable diagnosis, I don't think they mind too much because they just want to help their kids. 

SARAH ABO:   Peta, tell us about the problems your daughter had and when she was going through school? 

PETA:  When my daughter was born she had a lot of health issues to start off with so she was born with a congenital heart disease, she had an airways disease, she was tube fed from an early age.  Now she's also diagnosed epileptic, central sleep apnoea and a few other things, she's still tube fed. So right from day one pretty much I was aware of the fact that they thought that there was something going on genetically.

But as she was entering school they still hadn't worked out the genetic overall picture so basically, obviously we were seeing the paediatrician quite regularly and we went in one day and I said look, she's going into school, what can we do to help her?  And he said she does fit within the category of autism, that's what we're going to do and there's your verification for school. 

SARAH ABO:   So what did the school tell you to do? 

PETA:  I do recall that her ECDP teacher at the time said no, she's not autistic, we don't think that she is. But we did go through with the speech pathology, the occupational therapist, child psychologist and the paediatrician and they all signed off to say yes, she fits within that category. Even though we know something else is going on that could also answer this, she fits autism so let's do that. 

SARAH ABO:   So were you encouraged to seek that diagnosis? 

PETA:  Yes. 

SARAH ABO:   Even though you knew it was something else? 

PETA:  Yes. It was a way forward for her to get support at school. 

SARAH ABO:   What was she eventually diagnosed with? 

PETA:  February last year she was actually diagnosed with Coffin Siriss Syndrome which is a genetic disorder, very rare, approximately 150 people worldwide, but since I've joined a Facebook page for Coffin Siriss Syndrome families we understand now that every person diagnosed with Coffin Siriss Syndrome has autistic tendencies. 

SARAH ABO:   So you kept the autism diagnosis? 

PETA:  Yes, because it is a true representation of her, it's just not all of what's going on with her. 

SARAH ABO:   So the symptoms she has are quite similar to autism but without that diagnosis you weren't able to receive the support and funding? 

PETA:  Correct.  Because Coffin Siriss Syndrome isn't known, there is no funding whatsoever in Australia, or anywhere that I know of, that covers kids with Coffin Siriss Syndrome. So she wouldn't have been verified at school and the school wouldn't have subsequently got funding for her which, depending on, you know, what school she's in, would mean that she wouldn't get the support or just that the school didn't have as much financial ability to give as much support. 

SARAH ABO:   So what did the diagnosis mean for you? 

PETA:  The autism diagnosis? 

SARAH ABO:   Yes.  

PETA:  It was just a ticket for us. I mean we'd already been through five years of keeping this child alive, a piece of paper that was going to help her at school was pretty much all it was.

SARAH ABO:   What do you think about that Michael? 

MICHAEL:  It's a story that highlights the problem with the word diagnosis. So it comes from a medical space and it has an implication that we have a clear and categorical understanding of the problem. Now I've never heard of Coffin Siriss Syndrome and I'm a paediatrician. 

PETA:  I hadn't either. 

MICHAEL:  Okay, so.

SARAH ABO:   Andrew, have you ever been tempted to diagnose a child with autism when it's not necessarily the case? 

ANDREW:  I think everyone has and I think clinicians that say otherwise are probably not being too straight with you.

SARAH ABO:   Michael, with that, I guess, underlying desire to try and help parents, have you ever been tempted to diagnose autism unnecessarily? 

MICHAEL:  No, never unnecessarily. It's always for a purpose about helping kids. There have been situations where my level of discomfort has been at higher levels than other. Again, it sounds like at a point in time you can make a decision with a level of certainty.

SARAH ABO:   So do you think it's about labelling a child? 

MICHAEL:  I hate labelling, to be honest. I'd rather every child just be a unique individual who is uniquely understood in terms of what they find hard. But labelling is just a necessity in our culture.  I think rather than being against it we should just keep striving to do it well.  The problem is that you can't get help until they're labelled and it would be great to have a system where a struggling kid could just get help. 

SARAH ABO:   So is it possible then that children are just being misdiagnosed? 

MICHAEL:  I think people are doing the best they can with the information that's available to them, so I don't call that a misdiagnosis,  but you know, every kid is different. 

SARAH ABO:   Could doctors miss other problems? 

MICHAEL:  I think the lure of the funding possibly prevents actually looking at the whole picture with an open mind, yes. 

SARAH ABO:   Miranda, you have two children aged eight and eleven, what's their behaviour like at home? 

MIRANDA:  Um, well, my daughter is actually at home harder than what my son is and my son is diagnosed, not with autism, diagnosed with DAMP, Deficits in Attention, Motor Skills and Perception, ADHD, ODD, dyspraxia and low muscle tone. But my daughter when she gets home that's her vent, she just melts and there's just fights and she just yells and you'll say it's a nice blue sky and she goes no, it's green or teal and aqua dots like! 

And my son, when he was two, I put him into childcare and they had no idea what to do with him. He was, I think of it now as being like an uncontrolled Labrador, you get this puppy and he just jumps on everything and wrecks everything and does all these things and he would hurt people but he'd never be angry, he'd have this big smile on his face and he'd just start whacking into kids and everyone would complain to me. I couldn't take him anywhere, I couldn't do anything.

I tried to get my daughter diagnosed and nobody would even look at her. She mimics, her favourite day of the school year is NAPLAN test day.  So she's not hard for the school, she likes the structure and the routine but by the time she gets home she's a mess and so we have an absolute nightmare with her yelling and screaming. So at the home it's, it's a bit of a bomb site and everything's crazy and we get no sort of funding of any description because the diagnosis isn't the right diagnosis to have. 

SARAH ABO:   You took your kids out of school, you went to Spain. 

MIRANDA:  Yes. 

SARAH ABO:   For six weeks, tell us why? 

MIRANDA:  It got really hard.  I did home school for six months but found it couldn't juggle that with trying to work and being a single mum, so I listened to what everyone said about structure and you need to do the same things all the time and I'd been to the parenting courses and I'm like what can I do that strips away all the crap and then just allows you to have the basics of life? So I thought, why don't we just walk? And I'm not a walker myself, we had no practice.  I was, it was after a really bad day and I called my father and asked him to give us a hand to get tickets to go to Spain. We went to Spain and we walked for 500 kilometres. 

SARAH ABO:   And how did that go? 

MIRANDA:  It, we had good and bad days. The first two weeks we actually pulled Kieran off medication so it was, it was very, very, very volatile.  There was stone throwing and he fell to the ground a lot and screamed and cried and complained and hit people and we just kept walking. He had no choice but to get up and keep going but after the first two weeks it, it got better.

SARAH ABO:   And when you look at some of those photos from your trip, there's, there's one in particular, what's happening in this photograph? 

MIRANDA:  It was late night flight, like coming back and he'd just had enough and he'd thrown a massive tantrum.  In the afternoons he's always lying somewhere after having a massive meltdown and he's on the floor. 

SARAH ABO:   Have you been able to, have you been able to access funding for your children? 

MIRANDA:  No.  My daughter, I took her to a few places when she was younger, went to psychologists and they'd look at her for ten minutes and she'd talk to them and she'd do everything that needed to be done and so they said no, look the problem's with you and so I would then attend the counselling sessions and do parenting courses and they gave me some tips. They really did. But they don't fix the issues that are at hand, they don't fix what's going on.

SARAH ABO:   Do you think it's autism? 

MIRANDA:  Autism is a really broad spectrum and I would say that, yes, definitely for my daughter. She, she's just so detached. So yes I would say with her it definitely is. With my son, I don't know the autism spectrum stuff, it looks right but when I was explained DAMP, whether I was explained correctly or not I don't know, and it says it's more about motor neuron connections and after a long period of time it can start to get better. I'm not a doctor, I don't know what the real difference is, but when I read through all the autism stuff and I'm looking at it going oh, my God, that's what we deal with, except my son will look you in the face and he will talk to you till his ears fall off and he will, he will play with other kids but always on his own terms, always what he wants to play. 

SARAH ABO:   Andrew, do you think the current system is fair? 

ANDREW:  I think it could be fairer. I think is probably the words that I'd choose. I mean I think this is a classic example of a child who needed assistance early on in life and to get the resources and assistance that that child needs, there would have had to be a diagnosis given. Whether that diagnosis was appropriate is clearly very arguable and so why are we looking at their diagnostic criteria rather than actually looking at the child in front of us? 

SARAH ABO:   So you're working to create national guidelines for autism diagnosis.  What are you hoping for? 

ANDREW:  We're hoping for uniformity. So what we're doing at the moment is we're developing with the National Disability Insurance Agency we're developing national guidelines for how we diagnose autism. What we're looking to do is come up with a standardised way to appraise those behaviours and the end goal is to create equity. What we need is equity. At the moment we have a system where the likelihood of a diagnosis does change based on the post code in which you live, it does change based upon how cluey your family is in understanding how the system works, that's not good for anyone.

SARAH ABO:   Michael, do you think national guidelines will help? 

MICHAEL:  I do think they'll help. I wouldn't use the word equity, I think that's wrong. I think it will create more consistency which is a good thing. But equity implies that each child in the society gets an equal opportunity for help and if we've got this one thing for autism but not, you know, for every child with autism, there's probably another five to ten kids with equally valid special needs that aren't autistic and so I can't call that equity. 

SARAH ABO:   Peter, you're an advisor on the National Disability Insurance Agency who is rolling out the NDIS. What's the current funding system designed like? 

PETER:  Look, the National Disability Insurance Scheme, the act that gives life to it, is very clear about, about who's eligible for reasonable and necessary supports. It's about the functional impact.  It doesn't seek to name or diagnose as a starting point. So what the scheme seeks to do through early intervention is make that access easier for families that have a child that has something  going on for them. Now that doesn't automatically trigger entry to the scheme but what it does is it starts to trigger the right conversations.

SARAH ABO:   Michael, when we're talking about autism funding are there stakeholders profiting from the way it's currently set out?

MICHAEL: I don't think the issue is the financial incentives, the issue is the accountability for what you get for your money. So the current system, I think its biggest flew is conceptualises activity.  You go in and you get X number of services or you have a number of services until you've spent a certain amount of money, but there's very little accountability for what you get and in a consumer society, if you're building a house, you don't say to a tradesman I've got $16,000 to spend on the house, just come and do stuff. You actually have a clear sense of purpose of what you want for your money and to me the important thing is the accountability of how we spend the money.

SARAH ABO:   Finally what do you hope for the future, Cain? 

CAIN:  Um, I hope for a job, to be able to give that support to not just my brothers but my whole family, but I want to be a productive part of society but it feels like society isn't giving me the chance to do it.  That will really happen when autism still, I can't believe I even need to say it, but autism still has the stigma attached to it that it does. When people usually hear the word autistic, they think different in a very bad way, they think sick, they think damaged, they think weak.  We are not weak, we are not damaged, we are not sick, we don't need to be cured, we don't need to be fixed. It's the rest of the world that needs to catch up with us because…

SARAH ABO:   Did your diagnosis change how you see yourself? 

CAIN:  Only in the sense that it allowed me to like get a proper idea on why I'm different, at the moment I'm doing a child care course at TAFE because while I definitely understand autism, or at least for living it, I don't understand kids because like I said, I didn't socialise well in school, so I want to catch up on that time and if they ever come across the problems that I did, my brothers.

Because all the time at, mum and Fafa and the nanny keep commenting on how much they're turning up like me. They're looking like me, they're talking like me, they're doing all the same activities that I was obsessed with at their age, and so some cases still obsessed with. So if it does get to a point where the darker aspects of my own psychological makeup, if that's true for them as well, I want to be able to give them, like I said I want to able to give them the support I didn't have because the world needs different. 

SARAH ABO:   Thank you very much Cain and thank you all for your honestly.  That's all we have time for here, but let's keep talking on Twitter and Facebook.  Thanks everybody, I appreciate that.