Ep 2: Understanding Autism: Traits, Truths & Lived Experience

🎙 Episode 2: Understanding Autism: Traits, Truths, and Lived Experience

"When viewed through the lens of difference, rather than disorder, we often find that it's expectations that warrant changing, not humans."

Summary:
In this episode of the AuDHD Psych podcast, Aaron Howearth, a clinical psychologist, discusses the diagnosis of autism, its characteristics, and some of the lived experiences of some on the spectrum. The conversation delves into sensory overload, the impact of masking and unmasking, and the phenomenon of autistic burnout. Aaron shares personal insights on communication challenges and reframes neurodivergent strengths, emphasizing that autism is a unique way of being rather than a deficit.

Takeaways:
- Autism is diagnosed based on social communication differences and restricted patterns of behavior.
- Neurodivergent individuals may communicate in a "different dialect" leading to social disconnects.
- Sensory overload can be overwhelming, especially in busy environments.
- Masking is a common behavior among autistic individuals to fit in socially.
- Unmasking can be a liberating experience but is not easy for everyone.
- Autistic burnout can manifest as chronic fatigue and withdrawal from social situations.
- Scripting can help autistic individuals navigate social interactions more comfortably.
- Neurodivergent strengths, such as detail orientation, can be valuable in various contexts.
- Distractibility can lead to creativity and beauty in art and life.
- Autism should be viewed as a way of being, not a deficit.

Transcript

SPEAKER_00 0:00

Hello, hello, welcome to the Audi HD Psych podcast. I'm Aaron Howard, clinical psychologist and human at large. Thanks for joining us again. So thank you for everyone's feedback for episode two. We really love that everyone was able to get in there and have a bit of a look at it. And we've had some really lovely feedback about it. So thank you. Today we'll be looking at the diagnosis of autism. Not super deeply, but we'll look at what are the clusters of characteristics that we use to diagnose. And then we'll talk a little bit about what does it look like to have those characteristics and how they impact us in daily life. Just while we're here, we've got the lovely Urma's going to be joining me again in the background and just asking me questions and keeping me on track.

SPEAKER_01 0:46

I will come and just introduce myself to everyone watching. Yes, gorgeous. So I think just to start us off, should we start with um, you know, when I was first learning about autism and the diagnostic criteria in uni, it felt very overwhelming and the list didn't match how I feel like it feels for a lot of people. So maybe we want to run through the diagnostic snapshot. Yeah, very much.

SPEAKER_00 1:13

Absolutely. So autism, we diagnose it under two clusters of symptoms or you know experiences that people have. And they are social and communication differences and restricted and repetitive patterns of thought, behavior, use of objects, and under that second cluster is also sensory differences that people have. So with the social and communication differences, it's essentially the way I like to describe it is the average person in society speaks a language, and neurodivergent people tend to speak the same language but a different dialect. We have slightly different expectations about how we use language and how we communicate with it, and with that, if my communication is slightly different, then my social interactions are slightly different. If you're expecting me to say, hi, how are you, as I walk into the office, and I'm saying morning, and keeping on walking, and that's perfectly how I communicate, that creates a disconnect between my characteristics and the environment around me, and that creates the social difficulties that we are, we often see. In terms of that second cluster, the restricted and repetitive patterns of thought, behavior, and use of objects, that also includes sensory differences. But that's really when we talk about autistic people being really rigid, uh, that's what we're talking about there. When we have the stereotypes of, you know, a lovely old autistic lady who has exactly the same routine every day, that's the patterns of behaviour. And when we look at people stimming and self-soothing, those repetitive behaviors, if I do this or tap my fingers, they're self-soothing behaviors that help keep me feeling safe. The sensory differences are related but conceptually a little bit different. We tend to be over or under sensitive to light, sound, visual stimuli, mm-busyness generally, taste. All of those senses that everybody has, we can be less or more sensitive to each of those and the average person. And I think that sort of neatly encapsulates that.

SPEAKER_01 3:27

Thank you for that, Aaron. I think um if we could just sort of segue into the lived experience, and I know you touched on quite a few things whilst you were already giving us a little overview of the diagnosis. Um maybe we could start off with just what you were talking about at the end there, the sensory world. What does sensory overload look or feel like for you?

SPEAKER_00 3:47

For me, I don't have a significant negative relationship with individual stimuli, not with noise per se, sound, but busyness is a thing for me. If things are too busy, especially the more stressed I become, the more overwhelming it becomes, and we'll talk about it probably in a moment. It tends to become too much, too much for me to process. So my cognitive and executive function is taxed by all of the things going on. You know, I'm autistic and ADHD, so my sensitivity to distraction means that I'm probably noticing more things than the average person. So the busier the environment is, the more things I'm noticing, the more I've got to process with my cognitive and executive functions. So the more likely I am to be overwhelmed, experience social anxiety or anxiety in public, and run away to recover.

SPEAKER_01 4:46

Do you have any sensory comforts or STEM behaviors that help you regulate?

SPEAKER_00 4:52

Absolutely, I have loads. Uh I've always been somebody who tapped my leg as a young person, play with my fingernails, often clip them. I do this with my eyebrows quite a lot. I learnt as a young person, or younger person, to roll it into my facial expression so it wasn't so jarring for other people. But uh, speaking to my mum, I've done it since I was a baby. So there's lots of different self-regulatory stims that I do. And the thing that's interesting about stims is a lot of people look at them and don't understand that they have any purpose because they don't seem to. Me raising my eyebrows when I'm particularly more and more stressed or tired doesn't seem to serve any purpose, but for me, it provides some sense of relief. Playing with a stim toy might not seem useful to somebody who's sitting beside me in a class while I'm doing that, but it gives me something to attract my attention to so I'm less distractable from the thing that I'm doing. Uh, in terms of other sensory uh sensory experiences, I guess I'm under-sensitive or maybe not quite the right language. I'm very attracted to soft, fluffy things. So fluffy toys when I was a kid, fur, velvet, things that are soft and nice to touch. I really love those. I'm the person stroking the fairy wall in a nightclub. When I used to go to nightclubs.

SPEAKER_01 6:17

How do you balance wanting to join in with others and sort of needing that sensory safety?

SPEAKER_00 6:24

So for me, I guess I need to clock my privilege here that I am a 50-year-old mole and I'm really I've learnt to manage my anxieties and my overwhelms quite well. Um I did it in really unhealthy ways when I was younger, but now I just limit my exposure to the things that can be overwhelming. I don't go out and socialise for 12 hours at a time. I'm really encapsulated and time limited to minimize the risk of becoming really overwhelmed and my anxiety and stress spiking. Or if I am going to do a lot of social things and a lot of things in busy spaces, I tend to make sure that they're in spaces that I'm really comfortable with. Or in spaces where I'm only there for a time period and then I have time to rest before I go and do the next thing.

SPEAKER_01 7:15

That that makes a lot of sense. I like really like that sort of practical side to things, and I would say let's if we were to just um pivot the conversation a little bit towards masking and burnout in autistic people and you know anyone that might sit on the Aud spectrum. When did you first realize you were masking?

SPEAKER_00 7:34

So I think I came across the word masking before I realized that I mask. And I think that's just there are there there is a group of us who don't realize that we are masking because we've done it for so long that there is probably stress related to it, but we don't necessarily experience it because you know, for me, I think I think back to being a child and a young child, and I always felt different, and I never knew what that was. So I always felt a little bit on the outside, and so it was really I can always remember going into a social setting and scanning the people and then making myself conform to whatever it was that they were doing. You know, I I joke in a conversation that I really proud of the fact that I wasn't the average sporty kid burping, farting, and talking about football. But actually, when I was younger, if I went into that group of people, I masked up and I tried to fit in with that conversation. And that in itself is a drain on my cognitive function, it's a drain on my emotional capacity because I'm working so hard to feel safe by trying to fit in and then roll in my cognitive differences when people change things that I'm expecting, that becomes a little bit more of a stressor. And then if I have an emotional response, my impulsivity means that I can't control that as easily as other people, and then I tend to be emotionally overwhelmed as well, so it's really likely that I'm going to then become really overstimulated. So that masking has been with me from early life, so early that I don't recall when I started doing it, and it has impacts that uh emotional, social, and my overall well-being and health.

SPEAKER_01 9:29

How has sort of I'm not sure if you've been on this journey and this is something that you've discussed, Emma, but how has, if at all, you've ever, you know, sort of embarked on unmasking? Is that something that sort of changed the way you see yourself? Is it something that you know people might be potentially trying to do?

SPEAKER_00 9:47

Yeah, so for me, unmasking is something that I actively do just because of the group of people that I work with. I work with people who don't have the same privilege of experience that I do, and I have not had an amazingly easy life, but I've had a life that's put me in a position where I've been able to sit with who and what I am and learn to be really comfortable with that. Learn that I know what my values are. I know that I actively live by my values, and so I have the privilege of being midlife, and if people don't like who and what I am, I just don't care. I still care about people. I don't care if they judge me, and that's facilitated me unmasking. But I recognize that the people who a lot of the people that I work with haven't had the privilege of my history to be in this point that I'm in in life, to be able to let go of the anxiety that comes with that. And I think that's what keeps a lot of us stuck in behind our masks. And even at the moment, I still mask a little bit, and I work in this space and model for other people to unmask where they feel safe doing it. But I still do roll my stem into my g my conversational facial expression, and I I will not bounce my legs if I'm in an environment where I worry that other people will be distracted by it, and they're little tiny things, but they're just a little bit of extra stress that I have as the privileged human that I am. So masking for other people can be so overwhelming that even leaving the home can be too much of a stress and too taxing for people. So while I advocate for unmasking and creating spaces where autistic and ADHD people can just be themselves, I also want to honour the fact that it's not as easy as those words make it sound. And for some people, the cognitive and executive and emotional overwhelm of going out into social spaces is unbelievable. But we can help with that by creating friendly spaces, autistic spaces.

SPEAKER_01 11:53

Yeah.

SPEAKER_00 11:53

I'm not sure if that answered the question, but let's pretend that it did.

SPEAKER_01 11:57

I'm sure you you definitely answered the question. So what does I think this term of burnout is something that you know we've we've touched base on, we understand it roughly, but what does autistic burnout feel like?

SPEAKER_00 12:10

So uh a little background info. So autistic burnout comes under the chronic fatigue umbrella, which is essentially uh exhaustion, fatigue, burnout that we can't uh diagnose something else to explain it. So that's what chronic fatigue is. Autistic burnout is a specific set of chronic fatigue in autistic people. What it feels like, I can't speak to, excuse me, I've come close to burnout, but I've always been able to get up and do the things that I need to do. Um again, I want to clock my privilege there. But what autistic burnout can look like for some people is uh social environments become too hard, uh managing my emotions becomes too hard, uh engaging with the world, with light, with sound can be too much. And so when we see people burning out in the autistic space, we often see this real withdrawal due to anxiety in these places, whether it's from overstimulation or from fear of judgment and rejection from other people, to not going out, to avoiding those situations, which we can then go from anxiety into depression, and then we see people with really significant long-term depression, and that can often lead into safety-related difficulties like self-harm and suicidality. What is burnout? It's really just a drain on my cognitive and social battery, which are intimately related. Neurodivergence broadly is just a series of differences in cognitive function, whether that's my cognition or my cognitive function that's related to smell is much more sensitive than everybody else's. Or that part of my brain that's related to pain is much less sensitive than others. But if it's more sensitive, particularly, I'm gonna have more things coming in that I have to deal with. And if I live in a world that expects 12 out of 10 of this particular capacity, but I've got 7 out of 10 to give, I'm gonna be overwhelmed on a day-to-day basis. If I've got a few cognitive characteristics that are oversensitive, I'm gonna be overwhelmed as a baseline and just struggling to get through my day. If I do that for years and then overlay work and then a family and then life stresses, this is probably how we end up in autistic burnout. Um, I don't want to speak for other people, that's a very generalized statement, but you can see how the more stressed I am mentally, the more I withdraw socially, so I no longer have supports. I feel overwhelmed, it's harder to manage my emotions, and so I burn out because I've got nothing left to give.

SPEAKER_01 14:53

Yeah, and I think I guess um potentially we could talk a little bit about what are the signs of burnout that you notice in yourself to prevent that, and sort of what are the preventative you know mechanisms that you have in place? I think the great one that you have within the clinic itself is just taking those two weeks off every I'm not sure how often.

SPEAKER_00 15:14

About every four months. Yeah, well I yeah, so for me personally, I you know I do work a lot. Um I all the ADHD, I'm a serial overloader, but to make sure that I manage my burnout as much as I can, I take at least one week off every four months. But I think that kind of break doesn't have to be a big break as well for me to manage burnout. You know, I was saying before in social burnout, I I tend not to do more than one or at absolute most two social things in a weekend anymore because when I was doing that to try and manage the anxiety and the stress and the overwhelm that came without, I drank too much and I partied too hard, and it wasn't a healthy space for me to be in. And now I just take breaks. I do the same for my work to manage burnout, uh, but also I do the same thing day to day. I I personally have a gratitude and a mindfulness practice. I start my day with the most ridiculous things. I have a little loofah that's a duck, and I sing hello, ducky, duck, duck, and every single morning, restricted and repetitive, repetitive pattern of behavior. Yes, it is. Um but that brings me a little bit of joy, and I appreciate and I'm grateful for that. But I also have a mindfulness practice that I start and end my day with. And if I have a really big day where I know that it's going to be a lot, you know, I I see quite a lot of people on my clinical days, and I love the work that I do, but it's also a huge emotional load. So I space mindfulness throughout my day, whether it's mindful eating or a five minutes mindfulness of breath, that's just giving my my brain, my brain and my cognitive and executive function a little bit of downtime so I've got more in reserve. I've got more resilience for the extra work that I have to keep doing.

SPEAKER_01 17:00

Yeah, I think more resilience for the extra work that you have to keep doing is such a good segue.

SPEAKER_00 17:07

I love the social battery notion. It's just called spoons, you know, spoon theory. I've only got so many spoons to give, and if I ration them well, I can give what I need to, but also if people stop expecting me to have five spoons and use twenty, then also I can prevent burnout that way as well.

SPEAKER_01 17:24

Yeah.

SPEAKER_00 17:25

And that's environmental accommodation.

SPEAKER_01 17:27

Absolutely. And just to sort of segue back to the first thing we touched on, which is about social and communication. I think we were just talking about scripting for the podcast and how that's you know, it's an effective effective tool for sure for us to stay on track. Very much so. But I think how would you relate that to autistic people and so I think sorry to cut you off there, very ADHD.

SPEAKER_00 17:48

Um I think one of the things that we well certainly that I've seen a lot is this negative association with scripting. Oh, you know, it's a it's a social deficit or a communications deficit because you have to script going into things. Um often because I have to script, it means that there's something stressful there and I'm I'm preparing myself for the thing, and that that can be quite stressful and unhelpful. But also, we can use that in a really positive way if I know I'm going into an environment where I don't know, maybe it might be a workplace conversation where I have to, you know, have an uncomfortable conversation, and I'm worried that it will go poorly, and I'm autistic, and I already have sensitivity to social things going poorly. I can practice what I'm going to say to make me feel much more comfortable at the moment, at the time. Um, and that keeps me feeling a bit safer. That keeps my emotions a little bit more in check, and that keeps the conversation flowing the way that I hope for it to go in a really helpful way. I'm a really big fan of scripting. You know, we talk about the values of assertive communication and boundary setting. And for a lot of us, going into setting boundaries and being assertive is something that we haven't ever learnt to do before. So scripting what I'm going to say, um it just saves me having to think on the spot, it saves me having to respond in a way that might not be helpful for the relational dynamic that I'm going into, and it actually can help me feel safe. Obviously, there's a difference between doing it in a really helpful way when I'm going into situations that I must go into and making myself feel more comfortable in that. Um and where people criticize scripting, I think, is when we're just we have to use it on all occasions, and it's actually a stressful thing, and we're tying up time that we want to give to other things.

SPEAKER_01 19:43

So yeah. I think um one thing that I wanted to just touch on is how do you feel like you would navigate a situation where you're feeling like you're being misunderstood because of your communication style, or your intentions are not being conveyed.

SPEAKER_00 20:00

So I I have a story that demonstrates exactly that happening. I have a friend, they are an absolute delight. They are a beautiful human, and I mean that inside and out. They're a stunning human being to look at, and they're a stunning soul. They have really similar values to me. We worked together in the Navy and we we had kind of a semi-fun, inappropriate relationship. We'd make kind of funny jokes at one another. Um, and they they had a photograph that was on social media, and it was kind of a down-angled photo, and I commented on the photograph in the way that I I would have as a joke to them. Not thinking anything of it. I was it was it was a shot that showed cleavage, and I made a comment that was genuine to who I am and genuine in a friendly conversation, uh, where I just clocked that there was cleavage showing in the shot, and I think I said something along the lines of, oh, if I had boobs, I would shake them everywhere, or something like that. It was true, I love boobs. Um, but it was a truth for me, and it wasn't meant in any, it wasn't meant in any way to minimize that person. That was somebody who I still value as somebody who's been in my life. What I didn't understand was it wasn't us sitting on a balcony having a glass of wine. It was a public forum where the hundreds of people that were in their network saw that comment, and people, you know, WGF was I think the first response, and then somebody kind of implied that I was quite sexist, and I just didn't get it. Like I did not understand one why people were making judgments when they didn't understand my friendship with this person. Um, and then my friend actually sent me a message and said, I've deleted your your your comment, that's not appropriate in this forum, and I was so confused. But what it taught me was that I do have a social difference in that I just didn't clock, that other people overlaid. Their expectations on my behaviour and my communication. And it took me quite a long time to reflect and realize that, okay, to everybody else out there, it looked like at that stage a 30-something or 30-something-year-old guy was making a comment about boobs on a young woman's post, which is, you know, it sounds like misogyny personified. And I'm mortified that that's how it looked, because that was absolutely not my intent, and I didn't consider that that could have been the outcome. What it did do was teach me that it's not, it's not always appropriate to comment on social media in the way that you might interact with a person in a private world. And so that still to this day is always in the back of my mind. If I'm looking at something that I think is funny and I think, oh, I'll make a funny comment, I'm always masking a little bit and thinking, ah, actually, how will that be taken by other people? Because that experience of the disconnect between my social intent and the world's social perception, it costs me a lot, and that's just another little cognitive drain on me when I engage in social media posts. So I tend not to comment or post in a social media context unless it's in some way positive and uplifting now, which is great, that's really values aligned with me anyway. But it is also me limiting that part of me that's a slightly inappropriate humour that loves the word moist. You know, I literally say good morning moisties to people because I love the word. But in a public setting where it can be misconstrued, I just don't have comfort in being authentically who I am in that space.

SPEAKER_01 23:47

That's fair enough. And I think that's a really powerful story to share because there's so many layers to that story, and you know, like I think it's just it just goes to show that there is such a difference from a piece of paper and your lived experience. And figuring all of it out is just not something that you just you know you're not bored with. We have to figure it out to human beings.

SPEAKER_00 24:05

And I'm still figuring it out, you know, I'm still figuring out who I am and how different parts of my experience are interpreted. But I I guess I just want to clock one more thing. That whole story is not about absolving me of responsibility to consider the impact. Now that I know, now that I recognize that, um, that little bit of cognitive function that's tied up with thinking how will people respond, that's really valuable because I have the privilege to be able to do that. And so me using that, you know, 0.5% of my energy and preventing me making a joke that somebody might be really hurt by. I'm happy that I can I can do that, and I don't want to I don't want people to think that I'm trying to absolve us of the responsibility of not being harmful. So, and me glancing down that way was the delightful Uma giving me my 30-second uh no need for a monologue sign.

SPEAKER_01 25:00

Beautiful, and I think that we're gonna wrap it up today. So I guess what's you know, with just our takeaway points for this episode, we could definitely have a little have a third or a fourth one that sort of elaborates a little bit more on autism specifically, but just to wrap things up, what's one part of your autistic experience that you see as a strength or a superpower?

SPEAKER_00 25:22

Most of it, if I'm honest, and that is again a great deal of my privilege. I have a lot of stress from my characteristics because I'm not average, so I do work to try and fit into a world built for average people. Um, but I think my favorite part is ironically undone by my ADHD, and that's my details orientation. I love mere detail. You know, you can show me a picture of a pretty house, and I'm like, oh, I love that little art deco detail. Like, I will notice the small details. Uh ironically, when I have to apply that, my ADHD will then distract me off it. But I think that details orientation is probably related to um, I was chatting to somebody recently, and I was saying how my neurodivergence and hyperfixation means that in some situations I can consume huge amounts, huge amounts of information in short periods of time, and part of it is that details orientation. I also see interactions where other people don't because I notice the details and I wonder about that. It costs me a lot of time for that, but it also gives me an extra level of understanding of how things interact, especially with my clinical and research work. So I think details orientation is probably my greatest strength in a productive way. Take away the work and school environments, and I would say my inattention is my greatest strength. That being able to be distracted by those little details, being able to walk down on a rainy day and see the beautiful person away down the street with the pink umbrella, like that distractability is arguably what contributes to a lot of beautiful art in the world. Not from me, but from other like really skilled artists.

SPEAKER_01 27:07

I think that's such a beautiful way to put it because I think the one thing that I've noticed just working with you is that words with like negative connect connotations that we've been taught historically, like distractability, something that's like, oh, you're not supposed to get distracted, that's such a negative thing, but you've just made that into such a little, you know, like just I think reclaiming words is also a big part of that neurodivergent experience, and I think overall it's autism is just a way of being, it's not a deficit, and that's really what we're trying to emphasize throughout the whole podcast.

SPEAKER_00 27:35

Absolutely.

SPEAKER_01 27:36

And I think we could just wrap it up there.

SPEAKER_00 27:38

Absolutely. Well, thanks everyone for joining us again. We will see you in our next episode for a topic that I can't recall right now, so we'll pretend that I've just said it and it'll be an exciting thrill for you.

SPEAKER_01 27:47

Next week we'll be about ADHD.

SPEAKER_00 27:49

Excellent. Next week we'll be talking about the diagnosis of ADHD, and we'll see you then.

SPEAKER_01 27:55

Beautiful.