Autism and COVID-19, my interview with Professor Andrew Whitehouse, PhD
Many positive messages and great insights from Professor Andrew Whitehouse, one of Australia’s leading Autism researchers. We cover the impact of COVID-19 for people with ASD and how best to manage dealing with change in routine at this challenging time. We also discuss the positive shift in research away from focusing on genetic causes toward supporting people with ASD in leading independent, fulfilling lives.
- Autism Spectrum Australia: https://www.autismspectrum.org.au/how-can-we-help/covid-19-information
- Autism Awareness Australia: https://www.autismawareness.com.au/news-events/aupdate/autism-and-coronavirus-covid-19-the-essentials/
- Autism Focus Intervention Resources and Modules an extension of a service offered from the University of North Carolina, Chapel Hill: https://afirm.fpg.unc.edu/supporting-individuals-autism-through-uncertain-times
Professor Andrew Whitehouse Websites
- 60 Second Science: https://www.youtube.com/playlist?list=PLDHdc5wkdFJsJaRKeyZ_9IlWxKsjK6i8O
Dr. Anne: Welcome to the Annie’s Center podcast. My name is Dr. Anne Chalfant. In this special episode, we are focusing on autism spectrum disorder, because April is Autism Awareness month. This morning, I have the pleasure of interviewing Professor Andrew Whitehouse. He is considered one of the leading researchers on autism spectrum disorder, or ASD, in the country. Before sharing that interview, I’d like to start with this introduction.
Autism Spectrum Disorder, or ASD, is a group of neuro-developmental disorders. What does that mean? It means that they are disorders that are caused mostly by various genetic disruptions that then affect the nervous system and how the brain functions. They impact how a child develops. They usually occur in the child’s first three years of life. People with ASD are all very different. However, they do show certain common characteristics, and these include difficulty with social communication and social interaction. People with ASD also display a variety of repetitive behaviors and restricted interests.
As I mentioned, these behaviors are usually present before three years of age. However, for some individuals, they might become apparent during the school years, or even later in their life. Some individuals with ASD might also have associated mental and physical health problems. Due to COVID-19, it’s the associated mental health challenges that I want to focus on the most in this podcast.
The prevalence rates of ASD are suggested to be about 1 in 70. People with ASD are among the largest group accessing support throughout NDIS system, or National Disability Insurance Scheme. As I said, April is Autism Awareness month, but this year, it’s gone a little under the radar for obvious reasons with COVID-19.
Many of you know that one of my specialist areas, as a senior child clinical psychologist, is ASD and associated anxiety disorders. Anxiety is much more prevalent in people with ASD than it is in the general population, or in other groups of individuals with disabilities. In this global pandemic, we are all feeling anxious, whether we have ASD or not. Life is uncertain. We feel completely unraveled in many ways. Our lives have definitely changed dramatically as we all practice social distancing, and our normal routines go out the window.
As I said, for people with ASD, anxiety is more prevalent. In fact, people with ASD are four times more likely to experience an anxiety disorder. With COVID-19 and the complete upheaval of life and routines, people with ASD are likely to be suffering much more. If you think that you are finding it tough, imagine how hard it must be for someone with ASD right now.
Since it is Autism Awareness month, and since ASD is one of my specialist areas, and since people with autism might be suffering from significant anxiety at this time, I thought this podcast should be dedicated to discussing this issue, and then who better to do that with than one of the country’s leading autism researchers, Professor Andrew Whitehouse.
Andrew Whitehouse is the Angela Wright Bennett professor of autism research at the Telethon Kids Institute, and professor of autism research at the University of Western Australia. He is also chief research officer of the Cooperative Research Centre for living with autism, also known as the autism CRC, and he’s adjunct professor at Curtin University and Edith Cowan University.
At the Telethon Kids Institute, he leads a large team that uses a wide range of methodologies to investigate the early identification and intervention of children with autism spectrum conditions, including molecular genetics, neuroscience, endocrinology, behavioral experiments, and clinical trials.
Andrew has published over 200 peer-reviewed journal articles, and he’s attracted over $40 million in competitive research grants. He currently presents an internationally syndicated video series called 60-Second Science, where the focus is on trying to bring research to the lay community in a way that is easily digestible, and that has been viewed by over 1 million people. He is an advisor to the state and Commonwealth governments on policies relating to children with autism spectrum conditions, and he chaired the committee that generated Australia’s first national guidelines for autism spectrum assessment and diagnosis, which was a massive undertaking and a huge feat.
Andrew has published one edited book with his twin brother, Ben, and a popular science book that examined the science behind some of the myths of pregnancy and child development called Will Mozart Make My Baby Smart? He has also been awarded Australia’s most prestigious scientific award, the Eureka prize University of Oxford.
I hold Andrew in very high regard, and I’m very grateful that he gave up some of his time this morning away from managing his own young family whilst he works currently from home remotely.
Professor Whitehouse, thank you for agreeing to share some insights this morning. Maybe if we start with looking at the fact that we’re in COVID-19 world now, and people with autism spectrum disorder are prone to anxiety up to four times more likely to experience an anxiety disorder than the general population, other groups of individuals with other disabilities. What do you think of the impacts of social distancing and isolation on people with ASD at the moment?
Professor Andrew Whithouse: Good day, Anne, and thank you so much for inviting me. It’s a real honor to be here. It’s such a good question. Look, what we know about autism is that autism isn’t a rare condition that we used to think it was, and so there’s a large proportion of children, adolescents, and adults who are on the autism spectrum. It’s so important that we nurture people who are vulnerable during this time. You’re absolutely right, that there are lots of challenges that can come along with social isolation, and that’s probably even more heightened for people who are more susceptible to anxiety like children, adolescents, and adults on the spectrum.
For me in clinical practice and some of the research that I’ve seen, is a lot of the challenges is around the disruption to routines, and all of us find some sense in routine in our lives. Even myself, that morning coffee and going through the morning routines in the morning.
Dr. Anne: Absolutely.
Professor Andrew: It’s so important. For other people, this is absolutely the lifeblood of what helps them make sense of the world, and there are many kids and adults on the spectrum where that’s the case. If those routines are interrupted, which they no doubt are by a period of more restricted freedoms than we’re used to, then suddenly the world doesn’t make sense. All of us at the moment, the world doesn’t make a great deal of sense, but not all of us are especially prone to anxiety that can really bubble out of control.
For me that I think the greatest challenge that I see at the moment is not necessarily in that isolation, but it’s in the disruption to routines. My recommendation to families is try and maintain routines as much as possible, the same eating habits, the same sleep-wake patterns. At the same time, this is such a great opportunity to build in new routines, create new routines, and those kinds of things can really help make sense of the world.
Dr. Anne: Definitely the idea of sustaining existing routines where possible rings true for me clinically, and I was thinking about clients that I’ve been seeing through telehealth in the last couple of weeks, and some of them who are now young adults at universities, and of course the universities have all gone to remote learning as well, where they’re experiencing an exacerbation of their anxiety symptoms, some of them who have OCD, overlapping with autism, or ASD, and just an exponential increase in their obsessive thoughts and their compulsive behaviors to neutralize those thoughts.
Some of the sessions have been spent just trying to bed back down again, what the routines were when life was normal, and trying to just replicate that as much as possible. Even if they were going to the gym or if they were leaving home to go to uni, using public transport or things like that, how we could somehow replicate some of those things like doing gym work at home, even if it meant going on a drive. One of them was starting to learn to drive on his [unintelligible 00:09:30] and going for a drive instead of driving to uni, but just driving around the block a couple of times and coming back. At least there was something in the day that reflected or represented what things used to be like. It sounds like something that you would say is–
Professor Andrew: I absolutely endorse that, and there are ways that we can continue those routines. Even for me, I love going to a coffee shop, and it’s not just about the coffee, of course, it’s about the social experience you have along the way.
Dr. Anne: Exactly.
Professor Andrew: Our family has found different adaptations for that, but we’ve also established new routines. I think it’s a really important thing to remember, that every new beginning comes from some other beginnings end, and the routines of tomorrow might actually be what we start today. What we’ve done as a family is create new routines around going to the beach where we can, of course, within the limits, going to splash around in muddy puddles because I have young kids, which we absolutely love. These are things that we did certainly beforehand, but they’re now actually embedded within our routines, and that gives our little kids some beautiful comfort, it gives us a great deal amount of fun, and all of a sudden we’re in a new routine. Now, of course, not everything is as simple as that for everyone, but when we boil it down to it, the routines that we have now had to begin somewhere, and so it is for the routines of tomorrow.
Dr. Anne: Yes, absolutely, and I think that idea of that there may be things that we do anyway but really bedding down and cementing them in something that really becomes their natural routine and provides a flow for the day and gives certainty and calmness and the sense of mental calmness and stability to people, particularly for people with autism where we know with their anxiety presentation, that some of the causal factors is they have this intolerance to their uncertainty. certainly in the literature, that’s one of the things that comes through very strongly. There is a lot of uncertainty, as you said, at this time, Andrew. We don’t even know with schools, for example, the messages are so mixed, are they going back? When are they going back? How many days? For many individuals on the autism spectrum who are at school and remote learning, there would be uncertainty around that for them, and that would exacerbate symptoms and create difficulty. Yes, the idea of sticking to routines sounds very valuable for families at this time.
Professor Andrew: Absolutely, and where possible also. Parents and carers have an amazing opportunity to also help support the understanding of this [inaudible 00:12:14] world that we’re in. You’re absolutely right, we all have a great deal of uncertainty about what’s around at the moment. The parents and carers can establish themselves as the source of truth, and that’s really important during this time. You know how your child best learns, you know how your child best understands. Once you establish yourself as that source of truth and then help them through role-playing, through drawing, through other ways of expression to understand what’s going on, that’s a beautiful step towards understanding first.
Dr. Anne: I think that’s a great idea, the idea of trying to find concrete ways to help them comprehend the significance of what’s happening, because that is always the first step, isn’t it? To anything, if you don’t understand it, you can push against it as well.
Professor Andrew: Yes, I agree.
Dr. Anne: What about early intervention at this time, how do you think that would be playing out for people? I’m just thinking of recommendations like 20 hours minimum of therapy a week and the nature of early intervention being so hands-on in a bubble play and sensory social routines and those sorts of things?
Professor Andrew: It’s such a thorny question, and it’s a thorny issue because obviously, the hands-on cannot happen at this time, and there is no doubt that face-to-face intervention is definitely ideal. What do we do then for the families at the moment, who feel like their child is growing up and missing out on opportunities? I think the first thing that I would say to those families is, number one, there is never one shot at helping and supporting your child’s development. There’s just not one shot. There are multiple shots across the lifespan. If you’re worried about perhaps missing out on opportunities right now, I’d urge you to push that out of your mind because there really is no evidence that there is one shot. There are multiple shots across the lifetime in which we can support the development of your beautiful child.
The other opportunities that we have though is to say what can we do and how can we best support families during this time, and given how we don’t know how it’s playing out? Certainly, there’s telehealth and telemedicine, and there are definite advantages for this. For starters, we are finally giving telehealth and telemedicine the credit that it deserves. Certainly, face-to-face is great, but telehealth is certainly far better than nothing. Finally, we’re all looking at this in ways that we can innovate around this to help families and during this time. Telehealth is not good for everyone, particularly vulnerable families or families without an internet connection, it’s not great, but there is certainly lots of evidence telehealth, around early intervention, can provide great developmental support.
The final thing I’d probably say is that we’re actually finding in our own clinical practice that telehealth can actually help move children and parents further along the developmental pathway in ways that face-to-face couldn’t, where parents are forced to take a bit of a different role because they’re not sitting in the clinic with the therapist or the clinician, and then all of a sudden their clinician being advised externally. Yes, and there can be a huge amount more learning and quicker that can happen, we certainly found that.
Dr. Anne: I think that’s such an interesting point, and I think that the idea of parents becoming the therapist for their child in way is one of the aspects that some of the really great early intervention models. I’m thinking of the Early Start Denver model, for example, where they really promote parents taking on a chunk of that therapeutic intervention with the child, and so there’s opportunity maybe with telehealth, as you’re alluding to, for more parent training. Using those sessions to train up parents to work with their kids, rather than, as you said, the parent bringing them along to the clinic, dropping them there or sitting in and not having a more active role.
Professor Andrew: Yes, absolutely. I know you’ll agree with me with what I’m about to say, the challenge that we have is, how can we make telehealth support families to help nurture their child’s development, which they’re doing every day, just in a more structured therapeutic way, while also helping parents be parents and not therapists. That’s that the ongoing tension that all of us experience, that we want children and families to also have that beautiful child and family experience-
Dr. Anne: Connection, yes.
Professor Andrew: -that they have, while also having this additional duty along with it, and that’s attention and a challenge that will be ongoing forever.
Dr. Anne: Yes, absolutely, that’s right, regardless of the situation now. Do you think, Andrew, that there’s any benefits to social isolation at the moment for people with ASD? I suppose I’m coming from that community view that I think is still somewhat out there that people with ASD just want to be left alone, they want to be on their own, they’re in their own world, so that must mean that they don’t want to socialize. I’ve got some clients I can think of who are finding a benefit of remote learning where they’ve got less sensory input of the other kids, the noise at school, the visual over-stimulation, and those aspects being reduced for them, and finding benefit to learning in that way. I don’t know even for them that I would argue socially, that they’re enjoying being disconnected from people in this way. What would you say?
Professor Andrew: I very much agree with what you’re saying. I think there are islets of benefits here and there. That sensory one that you mentioned is one I hadn’t thought of, and I think that’s a really good point, and I can see certainly many kids benefiting from a different learning environment. What a great insight that we’ve got now, about how kids can learn in different environments, which we already knew, but here it is in practice.
Dr. Anne: He’s already brought it before, yes.
Professor Andrew: Certainly, I don’t see net benefit when weighed against the drawbacks for any person. I think that the notion of somebody on the spectrum never wanting to interact with anyone or be out in the outer world, is not just a furphy, but it was never a reality, and I’ve never seen any individual like that. Just as our freedoms are restricted, their freedoms are restricted in terms of, whereas my freedom of going to the coffee shop might be restricted, their freedoms to do other things, which are really important to them, are restricted.
I haven’t seen a net benefit to it at all, but certainly I completely agree, there are little bits of benefits here and there that we can learn from. What a great opportunity to learn and to push forward the case to schools, to other organizations that look at the benefits that can be brought through other environments and other ways have been. Yes.
Dr. Anne: I think that comes back to your point earlier about new beginnings and new routines. Maybe there’s new pathways for education moving forward in terms of additional flexibility for some of these kids with different ways of learning so that it doesn’t always have to be classroom-based with 30 other kids around them and other challenges that that involves, but a balance perhaps between the possibility of learning independently, but still have the opportunity to practice social interaction. As you said, I’ve never had a client in my 20-something years of practice either who’s told me that they really don’t want to be with other people. It’s that they don’t know how to be. The difference between not wanting and not knowing is so huge. I would agree completely that that’s certainly has been my experience with my own clients.
Professor Andrew: I think just to probably finish that point, it’s really that every crisis comes with many opportunities. I think people like yourself and myself and families, what a big job right now it is for us is to understand what have we learned from this, not necessarily you have people like you and me, immunologists or virologists, but what have we learned in our own sphere about how we live our own lives and the families that we see live their lives, and how can we translate that to a better new world? That’s a great challenge. That actually keeps me up at night with excitement. It’s great.
Dr. Anne: [laughs] I’m not surprised that you would say that, Andrew. Today, I relate completely to it as well. Just moving a bit more broadly now, because it is autism awareness month, and thinking about some of the people that may listen to this episode. What do you think at the moment are some of the hottest you would have your finger on the pulse more than anyone I know? What are some of the hottest topics in ASD research at the moment?
Professor Andrew: This is a great question. I love it because it gets me to thinking big. I am 100% confident that the hottest topics in an autism research are about what can we do to change the lives of kids to grow up into happy and healthy adults who can make choices for themselves. I got into the research field the same as you about 20 years ago. We were focused on causes. We were fine trying to find the gene and then the sets of genes that cause the brain to develop a little bit differently and have children display the behaviors that we diagnose as autism. We’ve really evolved in the sense that that is really scientifically interesting, and we understand more about biology, and hopefully we can start understanding more about how to help people through that biology. Really, there’s been a great shift to how do we give families and children autonomy over their own lives. That starts right from how do we find the most effective intervention for a particular child or adolescent in front of us.
At the moment, we know broadly that there are interventions that are effective. Clinicians on an individual level do fair fabulously matching interventions to kids, but we don’t do it in a systematic way with much evidence behind it. It starts there. It’s about how do we make the most out of education years. We’ve got a huge budget for teachers, and that’s going to be in our state budgets forever. How do we take advantage of that wonderful boon to help kids, because that money will be there forever? How can we help teachers? How can we help kids to work together to create better outcomes?
It’s employment. It’s about housing. It’s about autonomous lifting. It’s about financial security. These are the things that create happy and healthy adults. Not necessarily understanding the biological pathways that lead to autism. Those, to me, and I think to the broader community, is the excitement of where we’re at at the moment, that we’ve moved on a little bit from and trying to understand the biology to understand how do we create happy and healthy lives.
Dr. Anne: Which I think is so important because ultimately it’s about helping people achieve their own individual potential, and this idea of independence. When you leave independently feeling at whatever level of stage that is that you’ve got control of yourself, you’re more confident, you feel more self-actualized as a person. Thinking back over the years, that, for example, a lot of the research conferences like the international meeting for autism research or in far, and whether it seemed to be very heavy with this idea of causation and genetics and the push for a biological understanding, of course, do you see that that shifted as well in those settings?
Professor Andrew: Most definitely. It’s been driven by, number one, autistic adults having a strong voice, and that’s organizing, and having strong voice is super important. We see it with every aspect of our society. That’s what creates change. It took a few brave service providers and researchers to lead that charge then. They’ve led the way, and it’s created significant change. You know what the greatest change has been, is biologist interacting with kids and adults on the spectrum. That’s the biggest thing that can actually create change.
Dr. Anne: It’s so interesting.
Professor Andrew: How novel.
Dr. Anne: Yes. Why didn’t we think of that sooner? The issue of boys versus girls and detection of ASD, it’s clinically, I think in the training courses that I run, other people that I supervise or work with, it’s still a very hot topic for them. Where do you think we’re at with understanding that?
Professor Andrew: When you and I started out, it would have been four or five boys to every one female that was diagnosed. We now certainly know that that ratio isn’t as great, and it’s more like two boys to every one female. There were two theories around that. One is a biological theory. Again, very nerdy, but quite interesting. It’s the idea that actually always genetically a little bit more fragile. I love this one because males finally get it, but usually it’s females that get it. Boys are more genetically fragile. We actually require fewer genetic differences for the brain to develop a little bit differently compared to females. Females might require higher more genetic differences, and that’s called the female protective effect. That’s one theory. Certainly, there’s some evidence behind that.
Definitely, there are sociological explanations that our diagnostic tests and our diagnostic training is really geared towards quite a classical presentation of a male with a little boy with autism. I think there’s decent evidence behind that as well. Certainly, we’re at the moment. We do know that the four to one ratio of boys to girls is actually more like two to one. That’s certainly when you look, when you broaden out your horizon from how you were trained, you can start to see it a little bit more.
Dr. Anne: On that point, I suppose with diagnostic testing, obviously the gold standard tools. I still think predominantly the aid office is still the go-to whether it’s for research or clinically. It’s certainly is the one that people seem to know the most about, whether rightly or wrongly. I think it probably is still a very thorough assessment tool. How do you think that goes now? What’s the research around how good that is at detecting girls then with ASD?
Professor Andrew: Yes, it’s interesting that there was a scientific paper out just this week, actually, that really looked at– The first study was thousands of females with the [unintelligible 00:28:15] which is a diagnostic interview with parents. Showing that these instruments actually didn’t have a systematic bias towards identifying males versus females to any great degree. Certainly, there was a little bit of bias. I think that’s inarguable, but to a great degree. I don’t think there’s a huge case at this stage to change our diagnostic instruments. Certainly, the scientific paper was quite clear in saying that there’s no need for what we in clinical lens say set specific norms. Scoring the tests according differently for males versus females.
I think at the moment the tests are okay, but as you and I know, and the diagnostic tests are tools that can inform clinical judgment. It’s how we train our clinicians to override existing biases that we all have as humans in patients. That’s, I think, where the change needs to happen.
Dr. Anne: On that point, broadening out with that point, the national guidelines for assessment and diagnosis, which you chairs, that whole project which was [unintelligible 00:29:32]. It’s still real at the thought of how hard that must’ve been to manage it for such a huge task and I have such admiration for you for the way you went about that and for how thorough a job that was with you and the team preparing all of that. Where do you think we’re at now? This idea that I think where we were with assessment diagnosis was with clinicians. It probably preconceived or individual biases, that classic ASD [unintelligible 00:30:01] particular with boys in mind. I remember running training courses with people sitting in the audience saying, I can tell in five seconds if someone’s got autism or not, it’s just a matter of this and that. The lack of attention to differential diagnosis. I remember sitting in one of the forums when these guidelines were being prepared, and listening to that come through as a theme time and time again, the issue of being able to, we could all be good at detecting ASD. If we’re not equally competent at being able to determine what’s the difference between autism and ADHD or autism and global delay or autism and a language impairment, then we’re not so competent after all. Moving from that to now the introduction of these guidelines and trying to attenuate some of these preconceived ideas and give people a more uniform approach to assessment. Where do you think, Andrew, we’re at now a couple of years on or a year and a half or so on from the introduction of them?
Professor Andrew: It’s such an interesting point, and that point you raise about, I can tell in five minutes. For me, that argument that people are making doesn’t hold water for one main reason, is that if we look at analogies, and this is a clunky analogy, but hopefully it will illustrate the point, that with diabetes, with type 2 diabetes as an example. Well, absolutely. If an individual walks into a clinical room, there we can tell with some understanding that maybe somebody has type two diabetes because of various symptoms. Does that mean that we diagnose based on that?
Dr. Anne: Absolutely not
Professor Andrew: No, we do rigorous health and medical testing. By saying that we understand in five minutes, we’re holding autism to poorer health and medical standards than we would accept for anywhere else. That for me is not just doing our families a disservice, our professional lives a disservice, it’s unethical, and we all know that deep down, we all know that. The reason that we don’t change is because it’s bloody hard, and it hard. I’ve been going through the guideline process. I’m quite convinced I’m going to die five years younger now.
Dr. Anne: I hope you don’t because we have more to learn from you, but I can see why you would think that, because it was huge.
Professor Andrew: It was a great process to understand that, that because this is the way we’ve been doing it, where clinicians have their own ways of doing it, there’s professional inertia in that. We’re not willing to change, but this is about doing what’s right. Certainly, I don’t doubt the clinicians have very good eyes for understanding whether somebody is on the spectrum or not. It’s those other reasons that you mentioned. It’s about understanding, firstly, doing our ethical duty to families. We do no harm, do our best, all of those things. We must do that. Secondly, it is about that without a proper assessment, we cannot guide our clinical management. If we identify comorbid ADHD or anxiety issues, or– you know what? Autism symptoms early in life are often present in kids with severe neglect, severe anxiety, all sorts of things, we get it wrong. It’s not just about the ethical standards of keeping our practice to the same ethical standards of all areas of health and medical practice. It’s about sometimes we get it wrong, and it’s really important that we understand their own frailties.
Where we’re at with that is that the department of social services in the federal government is taking the bit between their teeth. They’re really keen to create a rollout procedure for that across Australia. What that looks like at this time, it’s very unclear. Certainly, prior to COVID, they saw this as one of their essential activities, and they’re planning that right now, and that will be done in conjunction with professional bodies and professional organizations. Because there are certain ways that things can be rolled out professionally. One is obviously they’re mandated by the federal government. I don’t necessarily need to tell you to get professional buying, but it’s one way to do it swiftly. I do think the way the buy get professional buy-in is by working with the individuals and the organizations that will use that. That for me is the professional peak bodies, like the psychological societies, as well as pediatricians and [unintelligible 00:34:39] and others.
Dr. Anne: Watch that space and we’ll see more on that by the sounds of it soon. Sounds exciting and good. Because I think one thing is the guidelines, and then the other is the implementation of them and the rigor around how that’s being managed and training people really continuing to train them and broadening their perspectives and views, as you’ve said, on or moving from that classical view to something that is broader and encapsulates more. Particularly we do say that certain kids, girls, for example, presenting differently and understanding that better.
With autism awareness month, and obviously you being really a leader in this field, if not one of the greatest leaders in this field with research, Andrew, what do you want people to know about your work?
Professor Andrew: Oh, wow. That’s a great question. I guess what I’d love people to know about our work, from a philosophical and principal level, is that we put very much the person on the autism spectrum at the center of everything, and that drives all of the research that we do. About six or seven years ago, we made a really hard turn away from genetics, away from biology to start understanding how we can actually reinvent our clinical services, particularly in the young age group, which is my predominant interest– Sorry, my predominant expertise, if I have any. I’m certainly interested in everything, but how can we reinvent those clinical pathways to work better for families and clinicians? The clinical pathway that we’ve been working under, where children are diagnosed typically between two and six years of age. I think we have about 60%, 70% of kids diagnosed at that age. Then intervention starts there, quite blunt intervention, because it’s often not matched to the strengths and challenges of that individual. I don’t think it fits the purpose. I think it’s been around since the ’70s, and we know so much more now.
We’re really trying to improve two aspects. Number one is working with little infants, and actually babies who have a family history of autism. We’ve developed an intervention for, would you believe it? This sounds a bit wacky, but newborns who have a family history of autism. Yes, it’s a little bit wacky, but we thought, well, if not us, then who? Also it was great fun any day at work with a little baby, and you get to hand it back. [crosstalk]
Dr. Anne: What does that involve? What does it look like?
Professor Andrew: Oh, originally a lot of it, you could probably drawback to attachment literature, but it’s really quite different to attachment. What we’re trying to help families do, we have an anti-natal session. Families are given a workshop, about a three-hour workshop about all of the wonderful things that new born babies can do. We have the luxury, or I have the luxury of understanding how much babies can do because I get to look at babies all day in a professional capacity rather than having to feed them and change them. Certainly done a bit of that in my time as well, but in a professional capacity.
They do so much, they’re desperate to communicate with you from the time they come out of the womb. What we’re seeking to do is to really help families understand how babies are communicating with them from the very first moment they come out of the womb, and how parents can best communicate back with them to help support that to and fro interaction that we know supports brain development. It’s a program that starts in the first anti-natal– Oh, sorry. The first session is in the antenatal periods of just a simple workshop, and it’s quite fun. Then we got a whole lot of sessions, maybe 10 sessions up until six months. It’s really based around using video feedback to help families understand what their baby’s doing and how much they can do it, and how beautiful and unique their baby is. There is no bub like that bub in the world. How special is that? We’re doing that. Then also infant intervention. Really working with a lot of 12-month-olds to how we can help support them prior to a diagnosis. There’s no reason that we must start. We have to start at the point of diagnosis. Why can’t we start earlier? There’s nothing saying that we can’t, and so let’s do that.
The second thing is really, how can we actually start to provide families a roadmap from the point of diagnosis? At the point of diagnosis, I’d love to leave. Once I drop off this mortal coil, if I could say that actually maybe some of my work helped provide a roadmap for families at the point of diagnosis, I’d love that. That means that, okay, we have a child who’s diagnosed with autism. They have an intellectual disability. They’re not saying a huge amount of words. They’re three years of age. There are two-parent household. Based on all the evidence, what intervention methodology do we think is best for that person. We’ll give the best bang for their buck. At the moment, individual clinicians know this, but we don’t do it in a systematic way. I would love, love, love to do that.
Dr. Anne: Yes, that sounds phenomenal, and I think so needed now, really at this point in time. I love what you’re describing around the attachment-based video at the antenatal period for families. I can see utility for all families, really, with that, not just families where there’s some query of vulnerability for ASD. So many clients of mine who don’t have an ASD where the parents would really have benefited from that early education around that early period, and looking at exactly, as you’re saying, babies as communicators and bids, the communication and understanding, how to reciprocate that.
Professor Andrew: You’re absolutely right. Look, we actually have a large grant that’s going to trial this, obviously, a very cut down version for embedding within maternal and child health nurse visits, even just 15 minutes tacked onto the end of the year. We think it’s got great thing, and it may or may not provide benefits to the child, but my bet is that it’s almost positive that it will provide benefits to families. Just myself, I think this research that we’re doing has come after my kids out of that newborn phase. Thank God. I do wish that I looked at those years with fresher eyes where I could say, “Oh my gosh.” When they’re doing that, they’re trying to look at me and look for me to do something funny, or do something again, and you know what, it helps you understand how precious and beautiful and unique your child is. That’s a gift if we can learn that really early on.
Dr. Anne: I think so, and I think it would help. I can see benefits of it for children where there may be some risk in terms of neglectful parenting, potentially, and just the benefit of that for parents to have that opportunity at child check-in and visits to see their child in a new way and in fresher eyes and in a more positive way. To see the benefits of those interactions as well.
Professor Andrew: The challenge that needs that of course, our systems are under inertia because change is so hard. We all know how change is. A lot of what I see is my job, whether people want it or not from [unintelligible 00:42:33], is to identify or at least try provide an alternate proposal of what reality could be. Reality could be that we have those first 6, 12, 18 months, really their whole childhood as the most special, and time to help children understand who they want to be. For me, that starts right from the womb, and certainly from when the baby comes out. There is no reason why our clinical services state, or government, or private can’t make that change. It’s only really due to the will, and it’s up to people like myself to provide the evidence that will help, that will evolve.
Dr. Anne: I think that’s fantastic. I look forward, as both a parent and a clinician, to seeing those changes come about over time. Just to finish off with, Andrew, what do you think more broadly you would like the community to be aware of this autism month? Because it has gone under the radar, I think a little bit, understandably so with COVID-19 and all the other things that have changed in our lives so drastically. What would you like the community to know at this point, or to be more aware of around ASD?
Professor Andrew: That’s a really great question. I’d love to have everyone sat down in a lecture theater and [unintelligible 00:43:58] style with their eyelids open watching [chuckles] something. I think more broadly is that, autism is just one dimension of humanity, and aren’t we lucky. What we’re seeing, we’re in a moment in time, right at the moment where we’re seeing the very best. It’s some of the less appealing aspects of humanity. What we can concentrate on as the very best, the way that Australia has been managing this has shown a sense of community. I think that certainly in Australia, we weren’t too sure whether we had.
I think we weren’t too sure whether we had such a great sense of community, but this has really shown that. Autism is just one extension of that. There are certainly many kids, adolescents and adults out there with great challenges. There’s no doubt about that. They should never be underplayed, intellectual disability, language disorders. These aren’t choices that people can have, and they do provide roadblocks to their lives. It’s up to all of us to actually help with those roadblocks, to not just see them, but also just do what we can. When we talk about autism, we talk about an extension of humanity, and what’s our role? Our role is to try and extend all of humanity [unintelligible 00:45:24] individuals. That means through education, through employment, through providing the autonomy over their own lives that we wish for our own lives and our own kid’s lives. That’s such a great challenge, both in the sense that it’s huge, but it’s also just such a passion that we can all keep alive. I guess that’s probably the one main thing, is that we are actually all in this together because we are all part of the same community.
Dr. Anne: Absolutely. Andrew, thank you so much for your time for those listening and for your insights and for all of the work that you do. As I said at the start, I am a great admirer of your work and your research. I think this morning’s chat hopefully has just brought to light how innovative that is, how helpful of the community more broadly it is, and what opportunities there are, as you said, not to being hurt and to stick with old ways, but to try and innovate and to push forward with positivity. The idea of seeking people’s potential and working towards independence. There are things that have really come through to me from speaking with you on this morning, which I hope will be beneficial, and I’m sure will be beneficial for people listening. I really value your time, and I’m very grateful for you speaking with me this morning.
Professor Andrew: Gosh, Anne. Thank you so much. Just I’ll finish with this, that my wife let me know the other day that my optimism and pathological optimism was endearing when we dated, but it’s awful when you’re married. I hope it didn’t come across like that.
Thank you so much for inviting me.
Dr. Anne: My pleasure.
I hope you enjoyed listening to that interview with professor Andrew Whitehouse. Please leave comments and a rating at Apple podcasts.
Our mission in producing this podcast is always helping families thrive. To keep things practical, I’m going to post some links to good resources on autism and COVID-19 in the show notes. I’ll also include a link to professor Whitehouse’s 60-Second Science video series, which I highly recommend you check out.
I wish you all the best. Stay safe and take care.
The Annie’s Center podcast was brought to you by Annie Center Proprietary Limited. Please visit anniecenter.com and subscribe to receive the latest updates and digital downloads from Dr. Anne Chalfant.
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