Episode 50: “What is Autism?” (Part 3): The Complex Interplay of Routine, Control, and Flexibility
Apr 18, 2024
Show Notes
For many Autistic individuals, the consistency of routines and rituals isn't just nice, it's a strategy to accommodate for the sensory needs of their systems. Routines are reflected both internally and externally, and the disruption of these routines can result in great distress.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk about the comfort and chaos of daily routines and rituals, shedding light on the importance and challenges of these patterns in the lives of Autistic individuals.
Top 3 reasons to listen to the entire episode:
- Gain insight into the world of all-or-nothing thinking, including its role in providing predictability and unforeseen comfort, as well as learn how this way of thinking influences our ideology, relationships, and advocacy efforts, and why it's crucial to strive for more nuance in conversations.
- Hear about how the struggle with flexibility can manifest differently for adolescent girls and boys, making it difficult to identify autism, as well as leading to misunderstanding and overlooking what's really going on.
- Explore personal stories from Patrick and Dr. Neff that illuminate the daily struggles of inflexibility and routine disruption, such as dealing with last-minute plan changes and the perplexing difficulty of seemingly simple tasks.
As you listen, consider your own routines: what keeps you grounded and how you manage when life throws a wrench into your plans. Understanding the role of routines in the lives of Autistic individuals can help us all create more compassion and patience for ourselves and the people around us when faced with the unexpected.
Resources:
For this conversation, we are using Is This Autism By Donna Hendreson, Sarah Wayland, and Jamell White. You can find it here. But wait...
- The publisher is giving our listeners a special coupon during this series! Use Code: NDI24 to get 30% off and free shipping Valid through 6-Jul 2024 (must purchase using this link)
Also, we’ll be reading this book together for our book club in June in the Neurodivergent Learning Nook. You can learn more about our community here.
DISCLAIMER: We're using the DSM-5 criteria as a framework for this conversation, and this is not our endorsement of the DSM. There have been a lot of very thoughtful critiques of the DSM in the last several years, and more specifically, how autism is presented in the DSM is very deficit-based. So, we are not in alignment with that view, but we did use that as a framework to walk through our experience of autism and to unpack the many ways that those criteria could show up in a person. The reason we chose to do this is that we believe in the power of transparency and demystifying the process of diagnosis, which has historically been very obscure and hard to understand. And so this is our effort for those who perhaps are interested in pursuing a diagnosis or who have gone through the process and want to understand it better. This is our attempt to help demystify that experience. It is not our endorsement of the DSM. Thank you for understanding that.
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Transcript
PATRICK CASALE: Hey, everyone. You are listening to the Divergent Conversations podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale.
MEGAN NEFF: And I'm Dr. Neff.
PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening.
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MEGAN NEFF: Hey there. So, it is April which means it is Autism Awareness/Autism Acceptance Month. And we're going to be doing a series around here on unpacking what is autism.
We want to issue a pretty big disclaimer here. We're using the DSM-5 criteria as a framework for this conversation. And this is not our endorsement of the DSM.
There have been a lot of very thoughtful critiques of the DSM in the last several years. And more, specifically, how autism is presented in the DSM is very deficit-based. So, we are not in alignment with that view. But we did use that as a framework to walk through our experience of autism and to unpack the many ways that those criteria could show up in a person.
The reason we chose to do this is that we do believe in the power of transparency and demystifying the process of diagnosis. The process of an autism diagnosis has historically been very obscure and hard to understand. And so this is our effort for those who perhaps are interested in pursuing a diagnosis or who have gone through the process and want to understand it better. This is our attempt to help demystify that experience. It is not our endorsement of the DSM. Thank you for understanding that.
PATRICK CASALE: Okay, so here we are doing part three of Autism 101.
MEGAN NEFF: Yeah, Autism 101, yeah.
PATRICK CASALE: [CROSSTALK 00:03:03] autism, I don't know. One of those things.
MEGAN NEFF: We're making collections because it makes me happy. This is our autism collection.
PATRICK CASALE: There we go, making collections.
MEGAN NEFF: And then we'll do an ADHD collection.
PATRICK CASALE: Yeah.
MEGAN NEFF: And maybe, well, I'm sure we'll find other collection to do along the way.
PATRICK CASALE: Cool. All right.
MEGAN NEFF: This might be helpful context for listeners, maybe not, maybe we shouldn't show behind the wizardry. I always think of like Wizard of Oz, and like the wizard behind the smoke screens. But it might be health context.
We haven't recorded… we've had a lot of guests. So, like, it's been a while since we recorded part one and part two. And I just really listened to part two, so I think I know where we're… or I know where we're at. But if it seems, I don't know, people just might pick that up. I think that's a helpful context cue.
PATRICK CASALE: Super helpful.
MEGAN NEFF: It's like a month later.
PATRICK CASALE: Yeah, here we are.
MEGAN NEFF: So, we've been going through the DSM criteria. I did realize, I don't know if we've done like a whole disclaimer on the DSM. Maybe we can do that at the end. But the DSM in a lot of the neurodivergent affirming spaces is heavily criticized, I think, for very good reasons.
My whole idea is there's a lot of people interested in knowing like, what is the criteria for autism? People who are assessing that listen to this podcast, people who are going in for assessments, and I'm hoping that this can kind of demystify the process for people. I don't think it's us saying like, we love the DSM criteria for autism.
PATRICK CASALE: Correct. I second that.
MEGAN NEFF: Okay. Yeah, when I was listening back I was like, "This is good stuff." But I wonder if we've, like, set up the conversation to like, yes, okay. So, autism is so much more than the DSM. And I do think I understand the criteria of how professionals identifying diagnosing is really helpful.
So, we're on criteria B, part two. And as a refresher, there's four components of criteria B. And to meet that threshold of autism you have to have two that are present.
So, we talked about repetition last time, which can include kind of ordering objects, but also all of the body-based repetitions.
And the second part, and I think, I don't know how much of it we'll get through today, but I think this one is perhaps one of the most important of criteria B to understand and sometimes the most misunderstood, which has to do with flexibility. And so when you think about that classic, like, responds well to routine, and can have big reactions when routine is disrupted, that's all clustered under this criteria of autism.
PATRICK CASALE: Why do you think that gets so often misunderstood?
MEGAN NEFF: I think, partly, so again, if we just look at it at a surface level, like in flexibility, meltdowns with a change of routine, if we're not understanding the deeper, like the why? Like, what is that routine giving the person? How is that helping with sensory regulation? How is that helping with executive functioning? How is it helping with their nervous system? We're going to have a really shallow understanding of that criteria. So, that's one reason.
I think another is that people expect it to be pervasive. One thing I love, also, just to refresh people, we've been using Is This Autism? as kind of a helpful guide, as we go through this process.
I really like one thing they say in their book, which is, look for islands of rigidity, because it's not going to be like every part of a person's life you see this rigidity or this in flexibility. It's not going to be in all contexts. It doesn't have to be in all contexts. If someone has a really supportive environment, that is flexibly adapting to their needs, you're going to see less in flexibility because their needs are being met, their support needs are being met, their nervous system is regulated.
So, I think that's the other big piece is that people aren't realizing this can show up really differently. It can also show up more externally or more internally. So, those are the few reasons I think that gets misunderstood.
PATRICK CASALE: Yeah, I think that's so well said and that's a great way to like conceptualize that too. Because I think when you get that, like, classic, stereotyped autistic presentation assumption it's like, this person's rigid, this person's highly structured, this person, like, lives in order, and like yeah, some of that is certainly true to some extent, right? But this is not an end all be all. And I think that's why we so often are talking about like, one person's presentation is very different than another's, and another 's, and others.
MEGAN NEFF: Absolutely, absolutely. So, I think I'll go through kind of like sub-themes, subways this can show up. And then we can do, like we've done, just kind of talk about our experiences with this. The first one, not going to be a shocker, routines and rituals.
PATRICK CASALE: Yeah.
MEGAN NEFF: Yeah. And that can show a lot of different way, and might be like, I need this part of my routine to go the same way. So, for some people it's like, I need to make my morning smoothly in exactly the same way. I need to, like, get dressed in the same way. And that's kind of that classic way people think about autism.
But it could also be like that… I talk a lot about routine disruption anxiety. When I have a sense of this is what my day is going to look like, and then, something unexpected comes that now changes that. Like, I get a lot of irritability and stress around that. So, routine disruption.
What about for you? Like, routine and rituals, what's your relationship to these things?
PATRICK CASALE: It's really interesting, because the more I've looked at, like, you know, I've talked about gambling addiction on this podcast. And when I used to be in, like the thick of that there was so much routine, there was so much ritual based on like how you do this thing. But anyway, I don't want to digress or diverge into that.
MEGAN NEFF: Can I interject one thing there, though? Because like, one of my favorite definitions of addiction is, you might know this quote, like ritualized self-soothing. Like, that's not helpful. But there's this idea of ritualized self-soothing that's core to addiction, which makes another link of why we might be so prone to addiction is it's a ritual, it's self-soothing. Yeah, okay.
PATRICK CASALE: 100%, I agree. Yeah, absolutely. So, that's one thing that came up.
Another thing is, like, I have certain routines that I do ritualistically. Like, when I travel a lot, I have to come home and do laundry immediately. Like, I cannot go to sleep, I can't shut my brain off, I can't go do anything else that has to happen. Like, I've gotten very much in that habit.
Then there's like, routines to how I start the day, or routines with like, how I structure my day. And just like you said, when things get disrupted unexpectedly, it can really create a lot of irritability and frustration.
And I've had to learn to allow for myself to feel that and experience that, not shame myself for however I react to it, and to give myself some time to rebound from that because you and I did an episode on routine disruption and task disruption. It can definitely lead to, for me, more of a meltdown situation. And it takes a little bit of time to kind of collect myself and say, "Okay, like, now we have to pivot." And can't always do that on a daily basis.
MEGAN NEFF: Absolutely. And that's where that… and I know we talked about this on that episode, too. But that's where that secondary narrative so often comes online of like, this is such a ridiculous thing to be upset about.
PATRICK CASALE: Yeah.
MEGAN NEFF: And so then there's two stressful experiences happening. There's the disruption, and then the narrative of our response. That's often a pretty negative narrative.
PATRICK CASALE: Yeah.
MEGAN NEFF: Yes, yeah. Yeah, in our child this was so obvious. And like, looking back, it's like, oh, my gosh, I can't believe we missed it. I remember what we finally ended up doing, especially, when the pandemic first started, because like all of a sudden routine was gone. So, we pulled out a huge ass whiteboard in our living room. And like, every morning we'd sit down as a family and be like, "This is our routine." We would visualize it, we would talk it through. And it was so interesting what a shift in the emotional tone in our family that was once we were able to visualize it that way. Yeah, yeah.
PATRICK CASALE: I love that. That's a great strategy.
MEGAN NEFF: I think partly this speaks to, again, it's not just that autistic people like routine, like there's a reason. There's some research that suggests our brain doesn't predict, like the predictability of the future. Like, that mechanism doesn't work quite the same way. And so I think that external structure of like, I'm going to actually, like predict my day, see it visually. There's something so containing about that.
PATRICK CASALE: So, I'm thinking like, and this is just on my mind, because I'm getting ready to go to Ireland to host a retreat and those are very structured for me. And I can really struggle with that if like, okay, if I've said scheduled this thing from 10:30 to 11:30, but we go to 11:45, or we start late, and that disrupts the entire flow of the day, I noticed myself having this reaction the first year and the woman who handles, like, all the tourism and the hosting for us is like, "You're going to have to adapt to Irish time while you're here and be okay with like, disruption." And I'm like, "No, that's not something I can do."
So, what I've done as a mechanism is to build in pockets of time before and after to allow for that to kind of fall into those windows as opposed to like, "Oh, shit, now everything is derailed, and the rest of the day is ruined."
MEGAN NEFF: I really love that because then it can feel like you're back on schedule. Like, creating buffer time. Yeah, I used to do that or I tried to that. I would advocate for myself to do that when I was in the medical system because they packed your schedule of, like, you might be seeing 16 patients in a day. And then if you have one crisis call then you have like eight people waiting. Having people wait on me is one of my least favorite feelings. So, that was like one of my big, I was like…
PATRICK CASALE: Me too.
MEGAN NEFF: You're laughing at that?
PATRICK CASALE: No, it just makes me so uncomfortable. Like, that feeling, and viscerally feel that.
And you're right, like if something unexpected happens but you know in the back of your mind, "I have another appointment, I have another meeting, I have another thing" I cannot describe that stress.
MEGAN NEFF: Yeah, I hadn't thought about it this before, but I wonder if it's, I know how much I don't like routine disruption. So, if I'm imagining myself doing that to other people, I feel really angsty about it. And maybe I'm imagining that their response is similar to mine, which it might be, it might not be.
PATRICK CASALE: Right.
MEGAN NEFF: Yeah. One thing about routines and rituals that I always like to kind of point out, OCD can look… this is where autism and OCD can look a lot like each other, they also co-occur at very high rates.
But the relationship to the ritual is going to be really different. With OCD, that is often in response. It's a compulsion that's in response to an obsession. So, the obsession, it might be an intrusive thought, it might be… There's some sort of trigger and you're trying to reduce the anxiety by doing the ritual. So, like, the classic example is contamination, and then you wash your hands. And that's a ritual, but it's serving the purpose of kind of reducing the anxiety that comes with.
Like, there's a very logical relationship to the anxiety. And the ritual itself, it feels good because you get momentary relief from the anxiety, but in and of itself, it doesn't feel good. It's in response to the anxiety and it might actually feel bad to like, feel like you have to do this ritual. So, the relationship to rituals is really different in autism versus OCD. But again, they can co-occur.
PATRICK CASALE: Great point. Megan has lots of Venn diagrams for Misdiagnosis Mondays on Neurodivergent Insights. And that's a great place to see some of the overlaps, and some of the differences, and some of the things that do co-occur.
MEGAN NEFF: I like how you're always plugging my stuff for me.
PATRICK CASALE: It's so good. I mean, I just want to… I know how you're going to take this. I'm going to say it anyway. But it's so good. And it just helps so many people. So, anyway, let's carry on.
MEGAN NEFF: Let's move on. Positive emotion deflected.
PATRICK CASALE: Yeah.
MEGAN NEFF: So, another way this can show up is by having, like, really strong reactions to small changes. One example of this, when my children were quite a bit younger, I got my hair cut, and I got bangs. I don't look great with bangs, by the way. But when my child saw this she burst into tears, ran upstairs, and was so upset with me.
At that time, I had no context for why. Now, I'm like, okay, I get that. I should have prepared my appearance is going to change. But that would be an example of that.
PATRICK CASALE: Yeah. Oh, yeah. I can see that for sure.
Another example is, like, socializing, going out with friends. Someone texts you the last minute and says, "Hey, we're actually not going to go to this restaurant, we're going to go to this place." And that can really, really lead to a lot of emotion and reaction because you may have been like researching the menu for weeks or really mentally prepared to go down this road, take this route, et cetera. And that can really impact you.
MEGAN NEFF: I think, again, that goes back to the sensory, right? Like, the sensory and the nervous system underpin so many of these so-called symptoms of, yeah, I always think about that too, all of the prep work I do to go to an event, emotionally, like, visually playing it out in my head, researching the menu. And then for that to change, like all of that prep work that got me okay doing that thing is now gone. And I feel exposed, and unprepared, and irritated.
PATRICK CASALE: Yep. And it could lead to situations where it could have a major impact, like on your social or professional life. Like, where you decide to cancel last minute because the struggle becomes too overwhelming. And then you can go back into that shame spiral where you're kind of beating yourself up for not, you know, following through on the plan or for the social engagement or whatever.
MEGAN NEFF: Absolutely. The other thing I'll hear autistic people talk about a lot is like, a lot of them will notice small changes in their room. So, like, I see this a lot, actually, with families where maybe a parent is trying to be helpful by helping clean up a child's room, but that really actually makes the child very anxious and irritable, because it's like, "You moved my stuff." Or, "You touched my stuff."
And so even noticing small changes in the environment can be one of these things.
PATRICK CASALE: Yeah.
MEGAN NEFF: Okay, food, and I know we're going to do some episodes on food. And I'm so glad because this topic of like, food sensitivities is coming up a lot. But one of the ways in flexibility can show up is around foods and having certain foods, and wanting to eat the same thing every day.
And again, from a sensory lens this makes so much sense. Like, if we find a food that is reliable and consistent, that we can tolerate the sensory experience of, like, why wouldn't we eat that for breakfast every day? And so this is one of the ways that sameness can also show up is in our relationship to food.
PATRICK CASALE: Yeah. I'm excited to have those conversations in future and actual episodes on these topics because it's such a big deal. And it impacts how you structure your day. It impacts, like, what you say yes and no to. It can impact dating, it can impact, like, friendship, it can impact all of these areas, it can impact children at school. So, there's lots of ways that if we're figuring out ways for sensory safe foods, or things that feel comforting, or reliable, we're not going to have, like, big surprises. It makes sense why we go back to the same thing again and again and again.
And my friend was giving me shit for this a couple of weeks ago. They asked me where I want to go to eat. And they're like, "Let me guess, one of these four places." I'm like, "You'd be correct, yes."
MEGAN NEFF: Absolutely, absolutely. The other thing… sorry, I feel like I'm not being reciprocal. I'm just, like, going forward with other info dump things.
PATRICK CASALE: I don't feel that way.
MEGAN NEFF: Okay. Well, the other way it can show up is also, like, inflexibility around food rules. And Liz does an excellent job in her book talking about this. We're going to have her on later this month to talk about eating disorders and autism. But she talks about how, like, going to a health class and learning these are healthy foods, these are bad foods or unhealthy foods, and then getting really, like, inflexible about the rules. And like, no, I want to be healthy. These are the rules.
So, this is one of the reasons this aspect of autism can get misdiagnosed as an eating disorder. It can also co-occur. Like, I think that makes a person more vulnerable to then develop an eating disorder. So, it can also be around the rules about food. [CROSSTALK 00:22:02]-
PATRICK CASALE: Absolutely. Just thinking about the rigidity, or the black-and-white thinking, the concrete thinking that comes in when you hear healthy versus unhealthy. And all of a sudden, it's like, "Oh, I have to I have to distance myself from all of this stuff." And creating these rules around food. I mean, yeah, it's such a great point. I'm excited for that conversation.
MEGAN NEFF: Yeah. Like, that's a huge place that a lot of undiagnosed autistic women, particularly, hang out is in eating disorder clinics. So, yeah, I'm glad we're going to be talking about that.
Another way this can show up is difficulty with transitions which we've talked about before and again, from a sensory lens. Like, transitions are sensory. Like, you're moving your body, you're moving, like, if you think about adolescents in middle school or high school, like changing classes every 15 minutes, right? Like, you're getting up, you're walking through a noisy hallway, you're readjusting. So, difficulty with transitions, but that can be for other reasons like the sensory elements involved.
Or have you been following kind of, like, do you know the term monotropism? Is that a word you know?
PATRICK CASALE: Yeah.
MEGAN NEFF: Yeah, I think that's another reason that transitions can be harder for us is it requires us to split our attention which is more uncomfortable for those of us with more monotropic mind.
PATRICK CASALE: Yeah, I mean, think about how much energy is being expended focusing or absorbing, and split that energy. And how, almost like fragmented life becomes at that point in time because it feels so disjointed or just uncomfortable to have to figure out how to navigate simultaneously.
MEGAN NEFF: One transition that was always so hard for me as a kid, and I see this with others is getting out of the car. Like, because I would finally… There's something that was very soothing about the car of like, staring out the window, the movement. And then I remember moments sometimes where I would like sit in the car after school for like an hour in the garage, in the darkness, because I just, like, could not transition to the house.
PATRICK CASALE: I never experienced that. But I can see how that could be very comforting, especially, if you're able to transition out of school where it can be very overstimulating. And then just to be in an environment where, you and I have talked, like, you've talked about this with your kiddos too, about like in the car sometimes we don't talk in the car, because we just need to be silent. And we need that time. And just being able to just be, I think that, yeah, that would be challenging to switch out of.
MEGAN NEFF: Yeah, yeah. Okay, you already mentioned this one. But another way this shows up is all-or-nothing thinking that's like a classic, actually, both ADHD and autism is associated with that. I want to understand, like I feel like for a lot of these, I understand the function they play either from a sensory system or nervous system, or I understand kind of the neurology underpinning it. I don't understand this one. I actually don't know why. We tend to be all-or-nothing thinkers, but I do know that we do tend to be that way.
PATRICK CASALE: That's a good point. I mean, as you're saying that I'm like, what purpose does that actually serve? And how is that actually… I mean, I get the purpose that it serves.
MEGAN NEFF: It's predictability, partly.
PATRICK CASALE: Yeah, because if you're thinking all or nothing, right? Like, whichever side you end up on, I mean, you're going to feel really comforted or at least connected to that. I don't know, I don't think I'm explaining what I'm meaning.
MEGAN NEFF: Yeah. And I have a mixed relationship to this because in some ways I am one of the most nuanced paradoxical thinkers. I love ambiguity. I love taking a nuanced perspective on things.
And actually, I was laughing, reading this because I was like, "I think I'm all or nothing for people who are all or nothing." Like, if someone presents a really all or nothing, like, viewpoint, I will almost always move… Maybe that's like a PDA thing. But I'll almost always move to nuance it. So, I have like an all-or-nothing reaction to all-or-nothing thinking. It's weird.
PATRICK CASALE: I have definitely found myself in all-or-nothing thinking patterns I think more recently, but I think it's just like, with our culture and where our country tends to go in terms of, like, big things happening in the world.
MEGAN NEFF: We're living in the most all-or-nothing, like, ideological culture that we've ever lived in, in the States. And it is interesting, I wonder how that's impacting autistic people. Because if you throw that political climate on top of a neurology toward all or nothing, I think that's going to complicate the experience for a lot of us.
PATRICK CASALE: Yeah, talk about a polarizing episode. But yeah, I can see that in myself sometimes. And I can see that in friends and colleagues where it's like, no, it's either this that's happening right now for or against, and there is no middle ground, and how complicated that becomes, and how deeply entrenched we become in those things.
MEGAN NEFF: Yeah, yeah. And I think one of the things, so, you know, this can apply to anything, right? This could apply to ideas, but I think one of the more painful places, and this is where, actually, I do see, I think I am no longer this way after doing quite a bit of therapy, but a tendency to be all or nothing toward people. So, like, if there is someone I admire, and then there's one thing they say, or one viewpoint they have that I disagree with, and it's like they're bad, they're in the bad bucket.
This is one of the reasons autism can look like BPD, like borderline personality disorder. The split of good and bad. When this is applied to people, it can look like they're all good or they're all bad. And then one thing I find in them means they're now in the bad bucket, which turns out is not great for relationship maintenance.
PATRICK CASALE: Right. Yeah. And we did an episode on attachment. You could also say that is a trait of avoidant style attachment, where we are looking for, like, one thing to then avoid that relationship. And so this gets fairly complicated when you're thinking about it that way.
But I'm with you on that, like, I've definitely been a person for most of my life where if I meet you, initially, at least, I'm going to either really like you, or I'm going to be on the complete other side. There's not going to be a lot of gray area or middle ground. And like you said, that cannot be a great trait for relationship maintenance or building.
MEGAN NEFF: Or like another thing I'll see is, it will be really hard for some autistic people to be in relationship with folks who have different values or different ideologies, again, because of that of like, if you have this view it means like you're a bad person. And that can be really hard to come back from. So, yeah, yeah.
But okay, we've kind of talked about some of the shadow sides of this. This can also be, like, some of the most profound advocates in our world are autistic. And it's partly the combination of kind of justice sensitivity plus the all-or-nothing thinking that can make a really powerful advocate as well. And so on the other side of this is that, like, really passionate, engaged, embodied advocacy that we see that a lot of autistic people embody.
PATRICK CASALE: Yeah. I'm glad you mentioned that because I was thinking about that. Some of the people who are really showing up in spaces and really advocating for the things that they're passionate about and believe in makes sense.
MEGAN NEFF: Mm-hmm (affirmative). Any other thing about all or… Yeah. Any other thing about all or nothing? I feel like that in itself could be its whole episode.
PATRICK CASALE: I'm just thinking about the mechanism now. Like, I'm going to be thinking about that all day. But no, I don't have any other thoughts other than my own reflection and confusion.
MEGAN NEFF: Yeah. And I want to understand… Because I also feel like, I mean, I see both in myself, all or nothing thinking, but I also see an ability for nuance, and an ability to see every perspective of everyone in the room in a way that, I think, like it's been pointed out as something of like this is something you do really well. You see everyone's perspective.
And I do see that in autistic people too. And I don't know, like, maybe it's because I was a social scientist as a kid to figure out, like, I don't know what that comes from. But I do know that on the flip side of this, the ability to see nuance, and to embrace paradox, I also see that in autistic people, which feels like it should be opposite to this, but I think it can coexist with this. But I don't understand the neurology of that. And that makes me uncomfortable to not understand why.
PATRICK CASALE: Yeah, there are, like, certain topics within the autistic advocacy space that you and I have kind of talked about that we may eventually record on, may not. I'm just going to leave it at that, where I think our ability to see nuance and paradox is going to be really important to have some of those conversations as opposed to saying like, it's either this or that.
MEGAN NEFF: Yeah, I think if the autism community, and by autism community I mean autistic people, I mean parents, I mean, like, all of the community is going to move forward in a helpful way. We're going to have to figure that out, because yeah, I have a lot of feelings about that. We should do an episode on, actually, I'm already nervous sweating just thinking about it. But I do think we should do an episode on, like, the neurodiversity movement and where we're at and our feelings on it. I have a lot of mixed feelings on it. I have a lot of positive feelings, but I also, well, I have nuanced feelings on it, Patrick.
PATRICK CASALE: Yeah, I mean, me too. The good news is, if we do that episode I'm sure it'll be quite polarizing. And you don't check any of the comments. So, you don't have to know what happens.
MEGAN NEFF: That terrifies me still. Okay, moving on. Another way this can show up is like getting stuck in our own thinking. And I think it's, partly, we can get stuck in, like, a narrative of unhelpful narratives. This is one of the reasons I think we are more predisposed to things like depression, anxiety because we might get the idea of like this… I'm trying to think of an example.
But we just might not have a helpful… Like, this means this. Or this happened because my teacher doesn't like me. Like, that might be a narrative.
And a kid might get stuck in that or an adult might get stuck in that, and where it can be really hard to unhook from that. That's one of the reasons I prefer like act-based mindfulness on hooking versus CBT, let's change the thought because I think, for one, that can activate demand avoidance. Like, you're telling me my thought's not real and that I need to change it. But also, I just think, yeah, I mean, we've talked about that before. But the getting stuck in our thoughts or in our narrative, that's another way this rigidity can show up.
Rule following. I'm smiling already. Are you a rule follower?
PATRICK CASALE: What would your guess be?
MEGAN NEFF: I would think, in some ways, yes. But then I would think there'd be like this mischievous part of you that isn't.
PATRICK CASALE: You'd be correct, yeah. I think there are things that feel really important to me when it comes to, like, following specific roles or rule-following. And then there are definitely parts of me who broke many of them growing up, and as a teenager, and a young adult, and still doesn't care about a lot of those, and yeah. Now, if I had to guess for you-
MEGAN NEFF: This is fun.
PATRICK CASALE: …I would guess 96% of the time yes. And then like 4% of the time no.
MEGAN NEFF: I think that's pretty accurate. I think at different seasons of my life it would have looked different. And I actually think it depends on if I'm more ADHD forward, or autism forward.
In adolescence, so I actually got arrested when I was 13 for shoplifting. And there was something about the novelty, the impulsivity. Like, it wasn't about getting the things. It was about getting away with it. It was the excitement seeking.
Also, if I don't understand, if I think it's a stupid social norm, then I'm like, no.
When it comes to directions, like if I'm told to do a thing, then I can be really rigid in my rule following in a way that's utterly unhelpful. So, like, kind of a silly example, when you're in grad school one of the big things is presenting at conferences. So, I was in my first year and I had a research study, and I was presenting at APA. And that's like the big conference for psychologists. It was a big deal. But I was kind of early to be presenting so I didn't have a lot of people, like, to follow.
So, I went online and I looked up, presenting a poster, I looked at How to Design a Poster. And what I probably could have realized, but I didn't realize because context clues, they were giving me the dimensions and the instructions for back when people were doing like cardboard posters probably in the '90s. Now, it's like a laminated, you print it. And I think it's like four by six feet is what they said. And those were the rules, four by six poster.
And here I am, like first-year doctoral student presenting at a big conference, I want to get it right, I want to follow the rules, because my social, like, is on the line, my social, whatever.
PATRICK CASALE: Your social currency, as you call it.
MEGAN NEFF: Yes, social currency. So, here I'm like a poor doctoral student, and I pay $200 to get this huge ass poster laminated. The person I'm doing the poster with his like, "They're not usually that expensive." I can't really chip in for like that much of it. And she may have even been like, "That sounds big." But of course, I would have ignored it, because that's what the rules on the website said.
And I get it. And it's huge. And like, I start crying, because I like, I followed the rules because I didn't want to stand out. And now I'm going to show up to APA with a poster that is gigantic, that probably won't even fit on the poster boards. So, then, I paid to re-publish it in a smaller size.
Like, I went to my mentor, and I was like, "This doesn't look right." She's like, "Yeah, this dimensions." I was like, "But the website said this."
So, that would be an example of, like, missing context cues, and being like, "But this is the rule, so I'm doing it this way." Even when there are signs that I wasn't going in the right direction.
PATRICK CASALE: Yeah. And then the unfortunate outcome is like, not only the fear of rejection the entire time, right? And then, ultimately, it's like, "Oh." Yeah, it becomes this thing, where it's like another example of how I just don't understand how to do things, or fit in, or whatever the case may be.
MEGAN NEFF: And I guess, so this is what flubs me into, like, fight/flight meltdown territory is instructions, they don't make sense.
PATRICK CASALE: Same, same.
MEGAN NEFF: Yeah.
PATRICK CASALE: My spatial relation or until my relational intelligence.
MEGAN NEFF: Like spatial visual? Mine is really low too. Or it's not really low, but like, I only have one, my verbal intelligence is high, the other three are, like, very average.
PATRICK CASALE: This one for me is very low, like below average. And it's the thing, right? Like, when I have to put something together, or I have to follow instructions of like, this is how you do this thing. And then I cannot for the life of me figure it out, I will melt down hard.
And I'm looking at this office chair that I bought, it's across the room for me right now. When I was putting it together last week, when my wife was out somewhere, I could not figure out this one step. And it was making me so angry. And I'm like, "This is an office chair, like this should not be hard." She comes home, I say, "Can you please look at this thing, because I can't do it." And she looks at it for three seconds. And like, does it. And she's like, "You had it upside down. Like, you just had to reverse it."
Now, those are the moments that take me back to, like, childhood me. And I'm just like, I can't do anything. Like, I can't do anything. And that's really where my brain starts to go.
MEGAN NEFF: I felt that, like, sense of incompetence of this should be simple and it is so hard.
PATRICK CASALE: Yes.
MEGAN NEFF: Yeah. That is me with technology and other things. Like, yeah. I guess, I mean, if we ever actually have our partners on, Luke, he sees it when I'm like, yeah, mid-meltdown about these things.
Yeah. And I think it does. It can lead to such a sense of incompetence. And that's part of that spiky profile which we've talked about before of like, it can feel so disorienting when things that are hard for other people can come easily for us. But then things that are easy for other people can feel so hard for us that just leaves us really confused, and can set us up to feel a lot of that incompetence.
PATRICK CASALE: Yeah, 100%.
MEGAN NEFF: Okay, so this was an interesting one. I actually didn't realize this till I read the Is This Autism? book. But literal interpretation. You would think that goes in like criteria A with a social communication, but that's actually part of criteria B inflexibility, because it's about being able to flexibly take in words, and to understand that they might have different meanings in different contexts. So, that's actually a flexibility thing.
And so that's one of the reasons, like, we might be a little bit slower to pick up jokes, or sarcasm, or metaphors, or just that tendency toward that literal thinking, actually, has to do with flexibility of the brain and adapting words, which I found that to be interesting.
PATRICK CASALE: Yeah, that's fascinating. And I can think of just so many instances in my life where that's been my reality. And then I've had to, like, I just keep going back to each time being like, I feel embarrassed, I feel ashamed, I feel like, why don't I understand this thing? Every time I'm, like, thinking about these actual real-life examples of this stuff happening. But that makes a lot of sense as to why.
MEGAN NEFF: For me, it feels like there's like a 20-second delay. So, like-
PATRICK CASALE: [CROSSTALK 00:43:28].
MEGAN NEFF: Yeah. And my son will often call it out because I'll start responding to something and be like, that was rhetorical. And I'll even be like, "I knew what it was." But I still just like felt this impulse to respond. It's almost like, so if someone puts a question out there, even if it's rhetorical or sarcastic, I do that a lot with sarcasm, I'll start responding, even if some part of my brain is registering it sarcasm, but I still have to respond as if it's not.
PATRICK CASALE: Right. It's interest interesting, isn't it? And like, then having, like, almost take that internal pause to be like, "Wait, what is happening here?" It's kind of where my brain goes. I'll even say that out loud. Sometimes I'm like, "Wait, what is happening here?" My wife will be like, "What are you doing?" I'm like, "I am realizing that I'm automatically responding to something that I really wasn't supposed to respond to or I was supposed to respond differently to." And it's like catching it in the act almost of being like, "Oh, that did not compute at all."
MEGAN NEFF: So, I'm just now putting words to this. It's almost like a completionist urge. Like, even if I can figure out the person's not actually asking the question that's registered, there's this like, I need to explain the thing or say the thing. And it will feel incomplete if I don't. Does that resonate?
PATRICK CASALE: Absolutely. And, again, we just talked about having our partners on. Arielle can sit here and be like, "He does that all the time." Because she'll be like, "Why are you completing the statement? Or why are you continuing to talk about this thing." Like, knowing that I almost can't cut it off despite acknowledging while it's happening, that it's not actually imperative or important to the actual conversation.
MEGAN NEFF: And I think this can show up in socializing where, I think, it can impact reciprocity, you can also look like, not just look like, be like not listening.
Like, earlier, when you were saying something about safe foods. And in my mind, I had already tagged I want to also mention that it is about rules. And it was, like, bugging me. It was like, it doesn't feel complete. So, I didn't really respond to any of the content that you said. And honestly, I'm not sure how much of it even registered, because I was like, I have this incomplete thought. And I need to complete it. And I need to say this thing. And so that's one way that this can absolutely impact socializing.
PATRICK CASALE: Doesn't that come into play too, like when we're repeating ourselves pretty constantly. Like, I repeat myself all the time. And it's because it's that incomplete thought, and it's like, "I have to get this thought, I have to get this thought out, I have to get this thought out."
But then I've said the thing maybe five or six times within an hour. And again, she'll look at me and be like, "You've told me this already." Like, I'm like, "It doesn't feel complete though. It doesn't feel like we have, like, a resolution to this conversation." Or whatever the statement was. And then I get trapped in it.
MEGAN NEFF: So, I don't relate to that as much. So, will it actually be the same thought, like echolalia? Like the same thought you're saying over and over?
PATRICK CASALE: It's a version of the same thing, yeah, yeah. And I can't pinpoint why. I'm just like, it doesn't feel complete in my brain. And it feels like I need this to be said again to reinforce the emphasis of the point. And it happens a lot.
MEGAN NEFF: I'm sure that's really fun for your marriage.
PATRICK CASALE: I'm sure she has a blast with all this.
MEGAN NEFF: She sounds like a very patient woman.
PATRICK CASALE: I would agree. I would agree.
MEGAN NEFF: And then one other, like, kind of subway this can show up is in our relationship to certain objects. So, like, not wanting to get rid of objects. Also, like I said earlier, like when objects are moved. That one to me… that feels more, because I know a lot of people will develop very like emotional attachments to objects. So, that's interesting, but I guess I do see how that could show up as in flexibility if we have these really intense relationships to objects, and yeah, why would we want to get rid of them?
PATRICK CASALE: Yeah, that's a good point. Are you talking, like, thinking about the example of people who, like, have 20 iPhone boxes that they cannot throw out, things like that too?
MEGAN NEFF: Well, and hoarding behavior, hoarding disorder, and hoarding behavior. That actually commonly co-occurs, well, both with ADHD and with OCD. And then most autistic people will probably have, you know, one of those.
But yeah, like, there's also something about being prepared. Like, I like to be prepared. So, when I'm throwing away something, there's always this fear of, "But my future self might need this." And then I'll regret getting rid of this. And that's what makes it hard for me to throw things away.
PATRICK CASALE: So, do you feel like you would make a good doomsday prepper? Or you feel like…
MEGAN NEFF: If I had better executive functioning, yes. I don't think I'm organized enough to be. My spouse is really good doomsday. We do have, because we're in the Pacific Northwest, where there could be that terrible earthquake at any time. So, we do have some preparedness. And that's been all him.
PATRICK CASALE: Interesting. I'm definitely the not preparing for anything like that because I don't have to in this area, but definitely the person who preps most of the things and prepares for most of the things. My wife is the person who's like, if we're going to travel somewhere, I'm just want to make sure we have enough clean underwear in our bags and that's it. I'm like, down to the tee. Everything has to be prepped for and prepared.
MEGAN NEFF: Yes, you sound like Luke in that. I'm not as much that way. But I guess when I do travel, like I do, I go through the checklist several times, because I don't like that feeling of, like, feeling stranded without my stuff. Yeah.
So, another thing about this criteria, kind of zooming out, just to know, and again, like, I really like how they frame it in their book, Lessons Learned from the Girls. So, these are patterns that are more common among girls. But like, someone of any gender can express it this way.
But this tends to be missed in girls more often. The rigidity or inflexibility is more likely to show up as kind of behavioral disorders in boys or to cause their, "like disruptive behavior" that then might lead to an autism assessment, or some sort of assessment because it's causing problems for the people around you.
Whereas girls might be more prone to internalize some of this rigidity. And so that could lead to anxiety, depression, and eating disorders, but that's more likely going to get missed, or you know, diagnosed as a mood disorder.
And so this is, again, one of those areas where really digging into the person's subjective experience becomes so critical. You can't just look at outside behavior to determine if a person is experiencing inflexibility or rigidity.
PATRICK CASALE: That's a good point.
MEGAN NEFF: Another kind of diagnostic question that sometimes comes up is like, and I think this probably is a question for all of the traits of like, everyone's inflexible at times, but like, what's the threshold?
And so I think it does have to be pervasive in the sense of this is like part of the person's baselines. Like, this is not in response to a stressful season of life. It's probably going to show up in more than one way, like we just reviewed several ways that this could show up. And it's going to cause suffering, or it's going to cause problems.
Now, the problems could be for the people in the person's life, right? Like, in the case of parenting, there's a lot of family disruption when we didn't understand what was happening in these kind of reactions to routine changes. But by causing problems, it can also be about what the person is experiencing. So, it's causing anxiety, or stress or, like internal pressure, like everything we've talked about with the irritability or the shame. And so it's not just about it causing problems for other people, but also, like, is it causing the person distress?
PATRICK CASALE: Yeah, that's a huge component, right? Like, because, obviously, we want to take how these things impact other people, but how much distress, how much frustration, how much negative self-talk, how much emotion is it causing you? Especially, if you're very cognitive about your process, right? Because then you're like, thinking about it. "Okay, this shouldn't bother me that much, this shouldn't have this much impact. I should be able to relinquish control over this or not do this thing."
But in reality, if that's not the case, that's like an internal battle cognitively. And it can really have some emotional impact as well.
MEGAN NEFF: Okay, you just said something there that I think is an important thing to pick up on too is control. One thing that this can look like or show up as is it can look like someone being, like, high controlling in a relationship. And the partner might experience it that way, as well.
And I've seen this sometimes where, like, it's so important to tease it apart, and to talk about what's happening of like, okay, this is not like, Partner A is not trying to control Partner B. But they need more predictability of what's going to happen when? So, this is a communication issue. But it can show up as efforts to control our environment because we're trying to control, like, our system, and other people that impact our system.
And so, one, that can lead to, I think, some really unfortunate labeling of someone as controlling when it's really they're trying to… this is a regulation strategy. Two, it can be experienced in relationship as controlling. And then it's a communication issue of let's figure out communication so that everyone can get their needs met. And this other person isn't feeling controlled. Yeah, it gets messy, nuanced.
PATRICK CASALE: Yeah, nuanced, agreed.
MEGAN NEFF: Are we at…?
PATRICK CASALE: I don't know.
MEGAN NEFF: [CROSSTALK 00:54:42].
PATRICK CASALE: Actually, we are very close to your hard stop. So, we probably need to be done.
I just want everyone to know that this last hour I've been staring at Megan's microphone, trying to still figure out how she has it. And then having this internal struggle with being like, "Let go of this, let go of this, let go of this. And stop letting this bother you." So, that's a very real example of some of the rigidity that's happening in my brain.
MEGAN NEFF: I love that you've been having an inflexible experience this whole time we were talking about inflexibility. I do that with… I have a lot of intrusive thoughts and some of that's because of my OCD. But I will do that or I'll be ruminating on something, and I will like, "Let go, let go, let go, dammit. Let go." Like, that is a harder aspect of this brain that just [INDISCERNIBLE 00:55:42].
PATRICK CASALE: Yep, yep.
MEGAN NEFF: That's a terrible way to end this episode.
PATRICK CASALE: Sorry, you all. It's the truth. Anyway, so…
MEGAN NEFF: Well, next time we will talk about the last two components of autism. This series has become very long.
PATRICK CASALE: We could use it for the whole month of April for…
MEGAN NEFF: Oh, yeah.
PATRICK CASALE: So, anyway, we've got run. New episodes are out every single Friday on all major platforms and YouTube. Like, download, subscribe, and share. And, goodbye.
