This is part 2 of Dr Fiona Aldridge’s interview, where Patty Kikos asks her about a variety of different assessment tools that can be used to help diagnose autism such as the ‘ADR’, which is the ‘Autism Diagnostic Interview Revised’, which is quite a lengthy interview process. Fiona also outlines 2 other tools such as the ‘ADOS’, which is the ‘Autism Diagnostic Observation Schedule’, and ‘CARS’ or the ‘Childhood Autism Rating Scale’.
Fiona:
I can completely understand as a mum myself, I would want to know the outlook for my kids is, and what is going to come, but I think it's just really difficult to predict.
Patty:
Because it varies so drastically from person to person.
Fiona:
That's it, and it's hard to tell, and even normal development is very varied, and people develop different skills like talking, within different time frames, so it can be really hard to guess. What we do know is that accessing support is very helpful, and the earlier the better. But at any age is is helpful, and that that does improve outcomes.
And I think the other thing when you're talking about prognosis is also that different things are important to different people.
Patty:
At different times as well, right?
Fiona:
Exactly! Some people have a really high need for social interaction and, so if you're someone like that, as a parent, you might look at a child who doesn't have that need and say “oh, but they need to be more social”, whereas maybe for that child, actually they're OK with having less of that social interaction or less social engagement. So it's a very kind of personal thing as well.
Billy:
From the Carer Gateway at the Benevolent Society, we welcome you to, Carer Conversations with your host Patty Kikos.
The Care Gateway is the Australian Government national care hub and provides reliable services, support and advice especially for carers.
This podcast is where we share interviews with guests that have specialized knowledge to help support carers to look after their emotional, mental and physical well-being.
We are recording on Aboriginal country, on lands which were never ceded. We acknowledge the traditional custodians and cultural knowledge holders of these lands and waters. We pay our respects to Aboriginal elders, past and present.
Always was, always will be.
Patty:
Welcome back folks. This is part 2 of our interview with doctor Fiona Aldridge, and if you haven't heard her first interview, I do recommend you go back and have a lesson. She has a Bachelor of Psychology Honours and master's in clinical psychology and a PhD.
She is also received specialised training in diagnostic assessment tools for Autism Spectrum Disorder, and other cognitive and developmental assessments. Fiona has been involved in research into the assessment of autism, and her research has been published in international journals, and she's even presented at international conferences.
She is also delivered training on the assessment of Autism Spectrum Disorders, and she is passionate about providing high quality and comprehensive assessments and helping people to use their strengths, to achieve their goals.
Fiona is also a mum of 2 primary school aged children, and she believes that it's an absolute privilege to have the opportunity to hear other people's stories, and to work with them to achieve their goals.
And if parents or carers are concerned, what is your advice? Should they consult their GP or their early childhood nurse or pediatrician in the first instance? Is that what you think?
Fiona:
Yeah. I think I think I would say their parents to that to listen to your gut. You are the expert in your child. You know them better and spend more time with them than anyone else. So if you are worried it is important to see someone and to check in with someone. And I think that early childhood centres and the nurses there, or a GP, is a really good place to start .
And then if they were concerned, they might refer on to a pediatrician, or an assessment service for a more thorough assessment. Or they might say, “you know, maybe we'll have a look at a speech assessment first, or we'll check hearing, or we'll do some things to get the the ball started.”
Patty:
Well, it kind of leads into my next question, which is how is a diagnosis made? I mean, how can you access a diagnostic assessment?
Fiona:
Yeah, so I guess there's kind of 2 parts to that question, and the 1st part is about how a diagnosis is made is that a pediatrician or a psychologist who specialises in the area of autism, or a multidisciplinary team which is a team that might have a pediatrician and a psychologist and a speech pathologist involved.
They do quite a thorough kind of information gathering exercise and then compare all of that information they've got against those criteria we were just talking about yeah, and if it's considered that the information gathered is consistent with those criteria, then a diagnosis would be made.
In terms of accessing that service, there are different ways to go about it, so, a GP might refer onto a private pediatrician who might feel comfortable to make that diagnosis or they might say, actually we need a more in depth assessment that maybe a multidisciplinary team or a psychologist who specialises in this area can assess.
And then they would refer on for that and that's kind of private services. I guess that come with usually a cost and sometimes a wait as well.
Patty:
I'm glad you mentioned that actually, because that's a conundrum that many of our carers face. In fact, they're almost at the end of their tether, if not at the end of the tether when they contact us and say, “look, we've just been waiting for so long, we're on a waiting list. It's going to cost us money that we don't necessarily have. How can we proceed in a way where we can be supported, and we can get our child assessed, even if we don't necessarily have the funds to do so?” Do you have any suggestions with that?
Fiona:
Well, I think it's a really tricky topic, because I don't have an easy solution, so I think there are definitely publicly funded services, particularly for children under 6.
You go through the child development units and you would do that, usually on referral from a pediatrician. Sometimes the GP and there is no cost, but the flip side of that is there's often quite long waiting list.
Patty:
Yep, 'cause it's the public system?
Fiona:
Exactly and then, as we've just said through the private system often it may be a shorter wait list. It may not, but it will come at a cost.
There are some Medicare rebates for children 12 and under, which does contribute towards that, but you would still be left with with quite a significant gap.
Patty:
Yeah, I understand that. And it is an area that I want to go into at a later podcast, so Fiona. Is there a standardised guideline? An assessment process?
Fiona:
So yes, is the short answer to that that question, but in a little bit more detail, we have a national guideline for the assessment of diagnosis of Autism Spectrum Disorder, which was developed based on research as an evidence-based set of guidelines developed by the Autism CRC and released in 2018.
And it outlines a process or a standard that is the minimum of what is needed for a clinician or for someone to make a diagnosis of autism and it kind of sets out the rules if you like, for diagnosis of autism in Australia, and there are 2 main processes or main pathways that people can follow when they are accessing a diagnosis.
So an assessment and subsequent diagnosis if appropriate, can be made by a single clinician, so by a pediatrician or a child and adolescent psychiatrist, or adult psychiatrist, or a psychologist with specialisation and additional training in the area of Autism.
Or alternatively, it could be conducted by a multidisciplinary team, and as we were saying, that's when there is a group of health professionals. Maybe a pediatrician and some allied health professionals such as psychologists, speech pathologists, occupational therapists who work together to make that diagnosis.
And I think it's probably important to note that even when an assessment is done by just one person or a single clinician, it is not that they are using only their information, or only their observations. As part of any thorough assessment involves information from lots of different people and different sources.
So it may come from the parents, from interaction and observation of the person being assessed from teachers or therapists, or partners, or other family members. All of that information is kind of pulled together to determine whether someone meets those diagnostic criteria.
Patty:
I imagine you'd be gathering history and background information that's relevant..
Fiona:
That's it. And even reviewing any past reports or other assessments that have been done, essentially, the more information we can gather about a person and their development, the way they see the world, the way they operate, the better.
Patty:
And I'm guessing there are a variety of different assessment tools that can be used. Can you tell us a little bit more about them?
Fiona:
And so you're exactly right. There's a whole host that people can use. I guess the most common ones that are used in a diagnostic assessment of the ADR, which is the ‘Autism Diagnostic Interview Revised’. And this is quite a lengthy interview, usually a couple of hours that the clinician would do with parents or caregivers, or even for adults, maybe a partner, a spouse, or a sibling.
It really goes through a person's life from the time they were born, their development, but with a specific lens on those kind of criteria we were talking about earlier. So trying to gather that information.
That ADOS, which is the ‘Autism Diagnostic Observation Schedule’, is another really commonly used assessment tool..
Patty:
Is this also an interview?
Fiona:
No, this is different. This is an interaction between the clinician and the person being assessed, so it's really the aim of the ADOS is to kind of mimic social situations. So what happens in the ADOS, is that the activities, the questions are different depending on the ages of the person being assessed, to really give the clinician a chance to get a sense for those social skills and social interaction abilities.
And the CARS or the ‘Childhood Autism Rating Scale’, is another assessment tool that combines both kind of a parent questionnaire or interview as well as some of those observations and interactions, and they're probably some of the most commonly used in Australia.
I think the important thing to note with any of these tools is that they are super helpful, and they give us a structured way to collect all this information, but they do not determine the diagnosis as such. It comes back to they are a way to help us gather that information about the diagnostic criteria to determine whether someone meets those criteria.
Patty:
My question is how can parents identify what the best tool is and then how can they access it, especially when they might even disagree with the diagnosis?
Fiona:
Yes, I think often the tools that are used are probably more determined by the clinician or by the multidisciplinary team. I think they will usually have standard protocols, but it's probably good for families to ask about what they are and to make sure that they're getting quite a comprehensive assessment.
I think if you've been able to have a really thorough assessment that has used information from all different sources and or different people, you probably have a higher level of confidence in the outcome and the result.
If families don't agree with the diagnosis or the conclusions that a health professional is coming to, I would really encourage them to talk to that person about it to say, “oh, I'm not sure I agree,” and to have that open discussion because, you know, I don't think as a psychologist myself who works in this area, we don't take it lightly like we don't give a diagnosis on a whim. I guess it's a carefully considered decision and we'll have a rationale.
But we would also want to have that opportunity to talk about that, and to clarify. Because maybe we have misunderstood something that needs to be revisited and re looked at.
Patty:
Of course, and is a screener considered the same things as assessment tools. Is it just a different way of defining an assessment tool? Or are they something completely different?
Fiona:
That's a really good question. They're quite different actually, so an assessment tool or a diagnostic tool is something that would be considered to speak more directly to those DSM 5 criteria that we talked about and to have quite a stringent cutoff point if you like.
Whereas a screener is more aimed at identifying any signs and symptoms and determining whether perhaps that person needs a full assessment. So if they have a lower threshold, so people might screen as needing more assessment or having indicators of autism, but then the full assessment might say yes, there were some indicators, but the full criteria is not met.
Patty:
Yeah, and are there other tools for parents? I I know many of my carers have asked if there's an app they can access. Does that actually exist?
Fiona:
Well there is actually a really lovely app called AS Detect, so it's developed by the Olga Tennyson Autism Research Centre out of Latrobe University, and it's based on a lot of research and evidence, and it's very nifty. And it has a lot of videos and information about the different early indicators and what parents could look for.
And a series of questions where parents can answer those questions and then it gives next steps. So “yes, you've answered in a way that suggests further assessment is warranted, go and see your GP” or “No, at the moment there's not a lot of indicators, maybe monitor”.
And if parents sign up to this, I forget the exact date and ages or but the app will prompt parents to do it at say like 12 months and 18 months and two years so it can kind of track. So it's a it's a handy tool.
Patty:
It sounds like it actually. And does the assessment process differ for adults as opposed to children?
Fiona:
The answer is yes and no actually, so I think the the important thing is that this we are looking for the same symptom groups the same criteria for adults as well as for children, but some of those symptoms present differently.
In fact, the interest is a good example. So what someone might have been interested in as a child might be very different to what they have a strong interest in as an adult but it's still an interest, but it's a different interest.
And people might have learned to cope. Or some things that were more of an issue when they were younger might not be so much of an issue now.
So there are differences in the way it might present, but the kind of criteria are the same, but I think it's that important for adults to seek out clinicians who are aware of those differences and the way that autism can change in presentation over the lifespan, so that people are not missed, and so that people’s lived experience, is heard and validated.
Patty:
And certainly so clinicians that are also aware of the depth of the spectrum. I personally think that everything is a spectrum. The other day I was negotiating with the body corporate in our building and I was given an answer and the answer was, no.
My response was “well when you say no, what do you mean by no”? And the person looked at me as though I was crazy, and he said “what do you mean? No is no”, " and I said, “is it a no, not yet, or more like a hell no, it's never going to happen?.”
So I guess that leads into my next question, which is, taking into consideration the spectrum that exists with everything in life, but particularly with Autism, what's the prognosis for someone with autism? Do different symptoms also show up?
Fiona:
And I think that's a very good question I think maybe if it's OK just to jump back to that adult question just for one moment, because it relates to this as well. I also think another thing that's important to be aware of with older children, adolescents and adults is that, often people might mask or camouflage in order to kind of fit in or to try to adapt to the world around them.
And this can mean that maybe some of their Autism symptoms are not as overt or not as obvious, but it doesn't mean that they're not there, and not having an impact on them and coming at a kind of cost to put up a facade or a mask.
When you interact like that, it takes a toll on on people, so I think that some adults say well they become quite good at that and then they go into an assessment situation and maybe they don't get a diagnosis because they can put on that facade, or they do use those kind of masking strategies.
Patty:
And have shown a level of adaptability that is unique to them.
That’s it! But it's important that any assessment process takes that into consideration, and I guess that's the difference a bit between children and adults, but kind of looking more at the prognosis kind of question. I think that's a really difficult question actually.
Fiona:
I can completely understand as a mum myself, I would want to know the outlook for my kids is, and what is going to come, but I think it's just really difficult to predict.
Patty:
Because it varies so drastically from person to person.
Fiona:
That's it, and it's hard to tell, and even normal development is very varied, and people develop different skills like talking, within different time frames, so it can be really hard to guess. What we do know is that accessing support is very helpful, and the earlier the better. But at any age is is helpful, and that that does improve outcomes.
And I think the other thing when you're talking about prognosis is also that different things are important to different people.
Patty:
At different times as well, right?
Fiona:
Exactly! Some people have a really high need for social interaction and, so if you're someone like that, as a parent, you might look at a child who doesn't have that need and say “oh, but they need to be more social”, whereas maybe for that child, actually they're OK with having less of that social interaction or less social engagement. So it's a very kind of personal thing as well.
So to answer the second part of your question. Yes, I think symptoms can or signs or indicators. Whatever you want to call it (indicators is probably good), do change over time so you might see that at one point in someone's life they present themselves with maybe a lot more difficulties in one area that are not so much of an issue later on.
Patty:
And I imagine that a stressful environment or situation would certainly impact those symptoms.
Fiona:
Definitely so you do see that fluctuation according to how else the person is feeling their internal state. If they're anxious or stressed or worried particularly, I guess in terms of some of those more behavioural indicators and behavioural signs might become more exacerbated at different times.
Patty:
Certainly because you could have someone that's a very happy-go-lucky and sanguine person, and then something very tragic happens to their life and suddenly they fall into a very deep depression when that had never happened before, so certain events can certainly impact our stress levels and exacerbate certain symptoms and conditions and responses in in all facets of life. How common is it to have autism and something else?
Fiona:
Very common, so I think if you're including kind of a whole gamut or range of different things that people could have, things like ADHD or attention deficit hyperactive disorder, anxiety, depression, you're probably looking at somewhere between 50 and 75% of people with Autism may also have one of these other conditions going on as well, and there are also some kind of medical conditions that might occur more commonly in the autistic population, like epilepsy is one example of that.
Patty:
So it's been great to hear you share how autism is a lifelong neurodevelopmental condition and how it presents, and what it looks like can change over time.
I think it might be time for some rapid fire wrap up questions. Are you ready?
Fiona:
Ready!
Patty:
OK. Was there an event in your life that literally turned your world upside down but somehow made it the right way up?
Fiona:
Do you know what? I think probably lots of parents might say this, but I think having kids in so many ways, I think you can't magine what it's like prior and they do to change everything about day-to-day life. But at the same time, I couldn't imagine life without my kids and the joy that they bring, but also the different perspective on the world of seeing it through their eyes, and rediscovering things through a child's eyes. It's just a great blessing, I think.
Patty:
Yep, it certainly is, and my lucky last question is if you could give carers one piece of advice to help them in their caring role, what would it be?
Fiona:
I think it's to look after yourself to put the life jacket on or the oxygen mask on yourself, before you look after others. And if you are not in a good place and you're not coping, it's very hard to be there for other people and to look after people in the way that you would want to.
Patty:
That's excellent advice! Doctor Fiona Aldridge. Thank you so much for joining us today and sharing your wealth of wisdom with us.
Fiona:
My pleasure, it's been great having you and that concludes our final interview with Fiona. To find out more about what ‘Aspect’ does you can head to their website www.autismspectrum.org.au
If this was inspiring for you to listen to, please subscribe and give us a five-star rating and share this with your friends. Remember, life is not a problem to be solved, but a reality to be experienced until next time. Be well and take care.
Billy:
If you are caring for a relative or a friend who has a disability, a mental health condition, a life limiting health or medical condition.
Or they are frail because they're getting older. Please contact us at Carer Gateway on 1800 422 737, or look us up on www.carergateway.gov.au
And if you are a carer, you're allowed to take time to look after yourself. You are just as important as the person you take care of.