Transcript for
Autism, neurodiversity, and child-centred practice – part one
Narrator [00:00:02] Welcome to the Emerging Minds podcast.
Host Sophie Guy [00:00:08] You’re with Sophie Guy. And today I’m joined by Erin Bulluss, a clinical psychologist based in South Australia. She brings a lived experience of autism to her work, as well as practising as a psychologist. Erin is director on the board of Reframing Autism, an organisation that aims to nurture autistic identity and culture. While celebrating diversity in all its forms, she co-authors a blog on Psychology Today called Insights about Autism and also has a social media page. Autistic Wellbeing Consultancy, where she shares autism positive articles about research and clinical practise to promote wellbeing in people with autism. In this episode, we discuss her lived experience of autism shapes her practise the reasons that autism and girls can be overlooked, and how practitioners can use a child centred approach to support autistic children.
[00:01:00] Erin, thank you very much for joining me today, it’s really great to have you.
Erin Bulluss [00:01:05] My pleasure. Great to be here.
Host Sophie Guy [00:01:07] So today we’re going to be having what I think will probably be a fairly wide ranging conversation about autism and neuro diversity and your experience as an autistic woman and a psychologist and probably get into some of the themes around autism in girls and why it seems that there’s a bit of a tendency that can sometimes get overlooked and perhaps some other things around, you know, the sort of cross section between things like developmental trauma and autistic traits and temperament and things like that. And as we go along, forgive me if I’m sounding a bit ignorant about some things, but I’m genuinely, really curious to learn and to understand more about autism and neurodiversity. So perhaps if we could start by just having you tell us a little bit about yourself and how you came to be working in the space.
Erin Bulluss [00:01:58] Yeah, absolutely. So I’ve been a clinical psychologist for about a decade now, but I’ve been working in the area of autism since my undergraduate psych days. So it is pure chance that I kind of stumbled into the area, we had a lecture on autism and the lecturer was looking for some students to provide support to a boy who had been diagnosed on the autism spectrum. I happened to be looking for work that was more psychology related than hospitality was. So I followed up from there and just found I really enjoyed working in the area. So from there I did my honours and PHD thesis is in the area of autism. And I found that even when I decided to take different directions to expand my clinical practise, I kind of fell back into gravitating towards working with clients on the autism spectrum. And I guess from that point then I sort of started to just work primarily or mostly with people on the autism spectrum. And then I myself had a late diagnosis of autism, which I guess kind of made sense to me as to why it was in the area that I kept gravitating back to and why there was that sort of resonance with the people on the spectrum that I’d been working with.
Host Sophie Guy [00:03:11] You know, I think the universe had a plan.
Erin Bulluss [00:03:15] Absolutley, yeah just kept pulling me back to autism. So now from that point, I really sort of combined the formal education and professional knowledge of autism with what I’ve processed around, lived experience of growing up undiagnosed as an autistic child. And I also have children who have also been, children of my own who’ve been diagnosed on the spectrum, too. So there’s kind of a lot of, I guess, different personal experiences that I draw from in my work, as well as more of the formal education. So I tend towards working therapeutically with people on the autism spectrum and with the goal of increasing wellbeing and developing mental health in a way that fits the individual’s idiosyncratic needs.
Host Sophie Guy [00:04:02] And what does that look like now? Well, you’ve been in private practise for quite some time, and I know from reading your bio today that you sort of, sounds like you do the clinical work, but also what I guess is a little bit of a different focus, which is around mentoring.
Erin Bulluss [00:04:17] Yes. So I guess one of the differences around growing up autistic compared to non autistic is that you find yourself in a, I guess a minority like a neuro minority. And so while psychology often, I guess, waits for people to develop some kind of mental health condition that requires treatment, I think it’s really important for people who grew up in any kind of minority to have a mentoring of sorts to help them navigate the world and find some sense of acceptance and understanding of their identity as someone who is kind of maybe different from the majority of people in some ways. So mentoring is sort of more about, I guess, that sort of preventative or psychologically informed that’s more about developing that really positive sense of self. Yeah.
Host Sophie Guy [00:05:09] Yeah. Which is something that we tend not to do that much anyway. Do we like you say psychology can be criticised for being deficit focussed. And as you say, like if you’re in a minority group that has, you know, a unique, different experience of life, I guess that becomes even more important.
Erin Bulluss [00:05:28] Yeah, absolutely. And I think it is it’s part of that sort of medical model where psychology often situates itself. But that does look at deficits because that’s kind of the way it works. I’m looking for something that is a problem and then fixing it rather than the more holistic kind of approach to increasing well-being and health in a more rounded kind of way.
Host Sophie Guy [00:05:53] So the next thing I was going to ask you, and it’s particularly interesting to ask you, as someone with lived experience and also the academic and practitioner experience. What is autism spectrum disorder?
Host Sophie Guy [00:06:07] Autism Spectrum Disorder is the formal diagnostic label that has been included in the DSM five. The DSM five being the main psychiatric diagnostic system that’s used in Australia. So previously there were two separate diagnoses. So there was autism and asperger’s. But research showed that there were more kind of similarities than differences between them and that the dividing line was kind of blurring and arbitrary. So when they did the revision or when they moved from DSM four to DSM five, they sort of condensed them both or put them both together in autism spectrum disorder. And so this diagnosis now kind of encapsulates everyone on the autism spectrum, regardless of IQ or speech or other factors that used to divide people into either category. So that’s kind of the back story. Back to autism spectrum disorder, which is diagnosed on the basis of two kind of broad domains. So the first one is socio communicative differences. And this one highlight differences in communication and social behaviours that are characteristic of autism. The second domain explores what is broadly referred to as restrictive and or restricted and repetitive behaviours, but it actually includes a range of different autistic experiences. So things like sensory processing differences, a preference for sameness and familiarity, which is often referred to as a resistance to change. But I prefer to talk about it as a preference for sameness, a tendency for mono tropic focus, which is, you know, often looks like diving really deep into interests with a level of kind of passion and a focus different from how most people would relate to their interest and this domain also covers different ways of playing, play by lining things up, sorting into colours or categories, and also spinning wheels on toy cars. So kind of qualitatively different ways of playing from how most children would play the game.
Host Sophie Guy [00:08:10] That’s a lot in that second category, isn’t it?
Erin Bulluss [00:08:13] It is a lot. And it’s really hard because the first category gets condensed quite easily into kind of socio communicative behaviours. But the second doesn’t, is not really easily described with a few words because it’s so smart that so much of the autistic experience kind of just all there in one domain. And people don’t have to have all of those things. But it’s about, I guess, a pattern of having those autistic traits like autistic differences and my descriptions don’t quite match up with how autism as described in the DSM because my wording, I guess, as we’ve talked about before, tends to be more around differences in deficits or kind of problematic behaviour,
Host Sophie Guy [00:09:01] Which is, again, can be problematic about the DSM and diagnostic medical model. It falls into that deficit sounding language.
Erin Bulluss [00:09:12] Absolutely. And many people, myself included, feel uncomfortable about that use of the word disorder to describe autism and prefer to align with the neurodiversity paradigm that accepts all kinds of different lines.
Host Sophie Guy [00:09:26] Yeah. Can you talk a bit more about that?
Erin Bulluss [00:09:28] Yeah. And so for that reason, I tend towards highlighting differences rather than identifying deficits. And I also tend to prefer to use identity first language like autistic and other terms like on the spectrum, rather than saying someone has autism spectrum disorder, which to me feels like not only like we can separate them from the autism, but also it kind of harks back to the days of trying to cure autism rather than accept people for who that they are.
Host Sophie Guy [00:09:57] Sure. Yeah. The very word disorder suggests there’s something wrong that needs reordering, doesn’t it?
Erin Bulluss [00:10:06] Absolutely. Absolutely. And that kind of, I guess, tendency towards trying to reorder somebody and particularly reorder the very foundation of how their mind works is sort of problematic for me in an ethical sense.
Host Sophie Guy [00:10:24] And I guess something is really interesting is that I guess there’s such a wide variation in how autism presents for people. And, you know, for some people, it comes with really quite disabling traits or it comes with significant disability and intellectual disability and a lot of distress seems as well. I’m really curious about that. I mean, so and I suppose because of that, you can understand that people could see that that’s something distressing that you’d want to help people with. How do you make sense of that within the big space of autism and neurodiversity?
Erin Bulluss [00:11:01] Absolutley. And I think a really important distinction to make as well as is the difference between, I guess, a calm, happy, relaxed autistic person and a distressed autistic person, and often a lot of the observable behaviours that come out that people see as being really autistic do come out more during times of stress. And I notice that in myself, though, things like stimming behaviours, which is is sort of slang for self conciliatory behaviours and includes sort of body movements and sound and things. And it is very much about self-regulation that happens more often when that when there’s a strong emotion. And so when someone is really distressed or under a lot of pressure or anxious, they are more likely to, I guess, show some of those traits that we would classically think of as autistic traits.
Host Sophie Guy [00:11:56] Could you talk a little bit more about what stimming is?
Erin Bulluss [00:11:59] So stimming is short with self stimulatory behaviour. And so it’s not an autistic thing to say. So stimming includes things like chewing fingernails, some sucking, hair twirling. So anything that kind of, I guess, gives some kind of sensory or movement kind of feedback and stimulation is stimming. But it’s something that is particularly important for autistic people. And we tend to have, I guess, more unusual stims. And ones, we can have quite a strong drive to do them. So it can be things like making noises. It could be jumping, it could be moving our bodies in a certain way. That single we bring hand flapping, all sorts of things spinning around in circles, all sorts of things that give our body particular sensory kinds of stimulation, and not all of them are visible. So one of the big ones that I’ve done to my whole life is kind of tensing my muscles in a rhythmical way. So in my head always could it bone dancing. So it’s a bit like kind of a sense of dancing. But my body remained still and it’s just like a tensing of muscle. And often people do develop kind of secret ways to stim because we kind of often pick up fairly early on that that’s not something that everyone’s doing. And so I guess particularly those of us who tend to look at our peers for cues on how to behave, tend to develop kind of ways of stimming that people can’t see. So that we can stay regulated and get that feedback. But without that being obvious.
Host Sophie Guy [00:13:41] Right.
Erin Bulluss [00:13:42] So I guess that’s part of, I’ve gone off on a bit of a tangent there but I think that’s an important thing to keep in mind and also that there are there are some co-occurring conditions that can kind of be conflated with autism. So things like intellectual disability are actually separate from autism. So people can have both, but they are different things. And there are other medical conditions that often people on the spectrum have. And people kind of conflate it and see, I guess, all of everything that the person on the spectrum has is being they autism, when actually often it can be several different things. But that being said, there’s also a huge variation in the way that autistic people do present. And there’s there was a study that was done looking at brain scans of autistic adults versus non autistic adults, and they found that there was a lot more variation in the connectivity of the brain amongst autistic adults compared to non autistic.
[00:14:43] So we’re kind of a very diverse bunch amongst ourselves as well. And if we kind of, I guess, take one key area associated with autism, which is language development. So that’s one of the really kind of core parts associated with autism. And look at all the ways that it can present. We can kind of start to get a picture of how there might be so much diversity amongst the autistic community. So, for example, we might see a child who doesn’t speak or we might see a child who speaks remarkably early. And so both are like developmental differences, even though they sort of almost on opposite ends of the scale. But both of those might be traits associated with autism for different children. Some autistic children are hyperlexic while others experience dyslexia. Some children are both non-speaking and hyperlexic. Often people on the spectrum like to use language and sounds for pleasure rather than for communication or in addition to communication. And that, again, is a separate thing from overall proficiency with language. So, for example, we may see a child who is non-speaking hyperlexic, which means they are to read very early.
[00:16:05] Yeah, and who makes particularly pleasing sounds as a self-regulation strategy, or alternatively, we may see a child who has very advanced speech language skills for the age, and he uses kind of learnt social script to manage interactions, but would really rather be making sounds that have a nice of mouthfeel. Speaking in movie quotes than that last example was taken directly from my experience. So we can start to see all the different kind of combinations of language development and use that all create all different sorts of presentations of autism and different from one area of language. A few examples from that.
Host Sophie Guy [00:16:47] Yeah. Is there some common link between those different sort of presentations, the different ways that language development can show like that?
Erin Bulluss [00:16:59] Yeah, and often it’s about so it’s at that the language development, I guess kind of the speed or pace of the language development. But it’s also social pragmatics. It’s the way that we use language, which often we may not have such a drive to use language in the way that we would typically be used in a social situation. So things like reciprocal conversations might not feel as natural as kind of just talking a lot about a topic. So there’s kind of, I guess, the sort of tend to be tied together, I believe, by sort of social pragmatics. But there’s so many different ways that that can kind of present and say even things like wordplay and enjoying puns is one of the ways often that autistic adults may kind of connect and enjoy. So rather than words being, I guess a medium for communication kind of, they’re almost like a play thing and having fun with the sounds and the ways you can make up, use the patterns of language to make up new words. And then kind of I guess it’s almost like a different relationship with language and words then maybe what most people would have.
Host Sophie Guy [00:18:08] Yeah, that’s really interesting. And so social pragmatics, what’s that?
Erin Bulluss [00:18:14] So social pragmatics is that really kind of social use of language I believe. So it’s about, so it’s using language for social means and in a very kind of, I guess, pragmatic, practical kind of way.
Host Sophie Guy [00:18:30] Yeah, that makes sense. That makes sense. Sort of like what is I guess maybe the tool of language being used for its purpose.
Erin Bulluss [00:18:39] Yes, absolutely. Yes, absolutely. And often language is so fine that words are just brilliant, like the ones that move around your mouth, as you say them are just so lovely. And so I actually have quite a lot of verbal stims, a lot of noises that I make, particularly when I’m happy, which most people don’t see because I camouflage that. I don’t do that. Most of the time. But the people closest to me will recognise that I’m happy because I make particular sounds and they often do move around my mouth. So like “ticka ticka” kind of sounds that bounce back and forth. So I guess that’s an example of a very different use of kind of language and sounds. But that isn’t social and it’s not practical. So it doesn’t have that kind of social pragmaticness to it. It’s much more just about, I guess, enjoying the feeling of it.
Host Sophie Guy [00:19:34] That’s so interesting. Now, that’s something I did not know at all about autism. That’s fascinating.
Erin Bulluss [00:19:42] And I guess those kinds of things that often and not always because there’s so much diversity amongst us. But often will be, I guess, relatable no matter our presentation. So even though people might look at me and then look at someone else they know who’s autistic and think that we’re nothing alike. There may be things like that that actually we both do. That that’s that kind of common ground in terms of autistic traits.
Host Sophie Guy [00:20:15] Now, I would like to turn to, I suppose, what I’ve heard in the media and over the years about how autism tends to not get picked up in girls so much. I’m just curious to know, is that still the case and why is it the case and what you think about that?
Erin Bulluss [00:20:32] And so I think that certainly is the case. And I think we’re getting better at identifying autism in girls. But research still shows that goes tend to be diagnosed later than boys and are more likely to be missed. I think a couple of years ago, the stats were something like there was one girl diagnosed for every four boys in Australia. When researchers and clinicians would actually expect the numbers to be much more equal, they might not be exactly equal. We don’t really know, but that it seems like a lot of. Being there, and I guess if we kind of rewind right back to the beginnings of, you know, sort of the discovery or the labelling of autism as autism, it was primarily boys who were observed. So the diagnostic criteria and the idea that we have autism right from the beginning was coming from observations of boys. And so we ended up with this kind of gender bias in what we see as being autism, which just then continues to be elaborated. If nobody specifically introduces looking at the presentation of non boys. And so we’ve kind of ended up with ideas and I guess stereotypes and particular presentations that we have in mind when doing diagnoses that are very much biased towards a male presentation.
[00:21:51] So, you know, for example, a very kind of stereotyped presentation of autism is sort of the boy who loves trains and memorises train timetables and perhaps connects with others by giving lots of detailed information about trains. And while that that is accurate for some people and certainly I have met boys and men who do have that as their interest. So it’s not that it’s untrue. But there’s a much kind of wider variety of interests that people can have. So, for example, we might have a child who puts the same kind of level of passion into horses by drawing horses, riding horses, connecting with children, you know, through a pony club. And that child might might meet the diagnostic criteria for autism just as much as the boy. He likes trains, but people might overlook them because the interest in horses doesn’t seem as kind of odd. Potentially. So there’s that kind of flying under the radar, often with interest being more kind of socially acceptable on the surface.
Host Sophie Guy [00:22:57] And does that for some reason tend to fall more in the socially acceptable category for girls or females?
Erin Bulluss [00:23:06] Yeah so often goes will have interests that do seem more socially acceptable. And so then people don’t really, I guess, necessarily look at the intensity as the interest or their sort of minor tropism, which is the single kind of focus on that interest and also girls tend to mimic their peers a lot more than boys do as well. So in terms of blending in, girls will look around and see what other girls are doing and then kind of try and do the same thing. And so that means that there’s that kind of flying under the radar. People think that too social. But don’t see, I guess, how much they’re struggling.
Host Sophie Guy [00:23:46] This brings us to the end of part one of this conversation about autism and neurodiversity. If you enjoy the discussion. Be sure to listen to part two where we delve deeper into practise and ways of working with autistic children that honour their uniqueness.
Narrator [00:24:02] Visit our Web site at www.emergingminds.com.au to access a range of resources to assist your practise brought to you by the National Workforce Centre for Child Mental Health. Led by merging lines, the National Workforce Centre for Child Mental Health is funded by the Australian Government Department of Health under the National Support for Child and Youth Mental Health Program.