Episode 74: OCD (Part 1): An Introduction to OCD
Oct 03, 2024
Show Notes
Obsessive-Compulsive Disorder (OCD) is often oversimplified and misrepresented, turning a complex mental health condition into a stereotype of mere cleanliness or orderliness. For those who struggle with it, the reality is far more nuanced, affecting many aspects of daily life and self-perception.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, provide a compassionate, insightful conversation about the perceptions, identities, and experiences tied to OCD.
Top 3 reasons to listen to the entire episode:
- Gain a better understanding of OCD as a mental health condition, how it differs from commonly held misconceptions, and why self-determination and neurodivergent-affirming practices are crucial.
- Hear personal stories about living with OCD, from intrusive thoughts and auditory hallucinations to coping mechanisms, and learn how these experiences align—or clash—with other neurodivergent conditions like autism and ADHD.
- Discover strategies for reducing stigma and opened discussions around OCD and mental health, emphasizing the importance of community, support, and educated perspectives.
When exploring more about OCD, especially within yourself or in support of others, remember that understanding and compassion are key. Equip yourself with knowledge, seek out supportive communities, and always prioritize your mental well-being.
Resource:
- Related Neurodivergent Insights Article: What is Obsessive-Compulsive Disorder (OCD)?
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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.
MEGAN NEFF: Well, hello, Patrick. We haven't recorded in a couple of weeks. It's good to see you.
PATRICK CASALE: I really love when I say like, "Megan, you start us off." Because I can just tell how uncomfortable you are starting us off.
MEGAN NEFF: I did the social ligament thing, though. I was like, "Hi, it's good to see you, Patrick."
PATRICK CASALE: It's good to see you, too.
MEGAN NEFF: We are starting a new series today.
PATRICK CASALE: Yeah.
MEGAN NEFF: We're going to be talking about OCD for at least four weeks, maybe more.
PATRICK CASALE: Yeah.
MEGAN NEFF: Yeah. How are you feeling about this series?
PATRICK CASALE: I'm feeling okay. I know you're feeling a bit nervous or overwhelmed by it. We've talked about this for a while. So, definitely, we want to do more collections, we want to do more series so that you all can follow along from episode to episode instead of bouncing all over the place. And I think that's worked really well. Would I say I'm nervous about talking about OCD? Yeah. Because, I, clinically, just don't have the foundational strength that you do. So, I'm going to let you guide and see where it goes.
MEGAN NEFF: Yeah, yeah. It is interesting because I think, for me, OCD is both, like, personal and then, also, like, I know it's clinically so complex. And I'm like, I want to get it right because there are a lot of misconceptions around OCD.
I'm also excited. I know we're having a handful of guests on. I'm excited to learn more about OCD. Like, I know how to diagnose OCD. I know what OCD is, but I'm not an OCD specialist. Like, I don't specialize in working with OCD. I'm not ERP trained or some of the special modalities. So, I'm also looking forward to learning from our guests, as we have them on. Especially, I'm hearing more and more about kind of how to conceptualize OCD or OCD treatment from a neurodivergent affirming lens. I'm excited to learn about that.
But yeah, OCD is complex for me. I've had it since I was a kid. And I don't experience OCD in the same way I experience my autism or ADHD. For me, personally, I don't put it in the same camp.
PATRICK CASALE: I was also diagnosed OCD when I was-
MEGAN NEFF: Oh, you were?
PATRICK CASALE: Yeah.
MEGAN NEFF: I didn't know that.
PATRICK CASALE: As a younger adult, probably about 20 years old I received that diagnosis.
MEGAN NEFF: And is that a diagnosis that fits? Are you like, yes? Or do you feel like that was a misdiagnosis?
PATRICK CASALE: I might complicate this conversation right now, but I go back and forth between OCD and OCPD a lot of the time.
MEGAN NEFF: Oh, well, I have a whole article on that. I actually love that topic. Maybe we should add an episode on OCD versus OCPD because I get that question a lot, and I just created my Venn diagram on it a couple months ago.
I definitely have OCPD traits as well. And I have OCD, yeah.
PATRICK CASALE: Yeah. It's so complicated. And it's complex. You know, you mentioned misconceptions, and I think for those of you listening, I think what's the immediate thought when you think of OCD? My immediate mind goes to, like, checking the stove a million times before you leave the house or-
MEGAN NEFF: Wait, you don't do that?
PATRICK CASALE: I don't do that now.
MEGAN NEFF: I do, do that.
PATRICK CASALE: [CROSSTALK 00:05:20]. That's not one of my traits that I experience. Or touching a doorknob X amount of times before you can leave or a light switch. I think that's what comes up for a lot of people when they immediately think of OCD.
MEGAN NEFF: Yeah, that really classic picture of compulsions. Yeah, absolutely. And I think that's actually one of the reasons… So, there's one research study that showed, on average, it takes 12 years from symptom onset to get diagnosed. And I think what you're naming right now is one of the reasons people often don't get diagnosed with OCD. OCD has so many different flavors. It can be internal, it can be external. And if you're not doing the classic, it's kind of like the autism thing, right? If you're not a classical presenter, it can be missed. So, if you're not doing the, like, hand washing, or the checking of the door, the checking of the lock, I do think it's harder to detect and maybe even harder to validate in ourselves.
PATRICK CASALE: Absolutely, I agree 100%. And then, as things start to get murkier, as you get older, and symptoms start to blend together, or traits start to blend together, it then becomes even harder to pick it apart, sometimes, to get a good sense of what's really going on.
MEGAN NEFF: For sure. I mean, like, ADHD kind of compulsive checking because of all of the errors we make, like that can look a lot like OCD. I know because I do, like, re-reading emails. I know part of it is my dyslexia and ADHD and part of it's OCD. And I can actually feel the difference. But like it could look very similar or autistic ritualistic behavior and compulsions can look very similar. Yeah. Like, what was going on in your 20s that you were diagnosed with OCD?
PATRICK CASALE: There was a lot of obsessive thinking, for sure, a lot of obsessive worrying, a lot of what do you would call like obsessive traits and tendencies, like thinking about things, rumination, constant worry, and concern. And then, the compulsive acts, right? The behaviors behind the obsessions.
And I think a lot of it was tied to gambling addiction because there was so much obsessive and ruminative process around gambling. There was so much compulsion around gambling, there were certain things I had to do ritualistically. So, I think that felt in alignment. And that's where it gets really even trickier. And we've had the addiction episode before, throw addiction into the mix, it really complicates mental health symptoms and exacerbates them even further to a point of like chicken or egg situation.
MEGAN NEFF: Yeah, yeah, absolutely. And this is something I've been thinking about, partly, as I've been doing more, like, reading into OCPD and OCD. Like, I think of having an obsessive mind as almost like a meta concept that tracks with a lot of these. I haven't yet met someone with OCD who doesn't also have an obsessive mind. But I think someone can have an obsessive mind and not have OCD. I think most autistic people have an obsessive mind. And I have so many obsessive tendencies.
And I think that can get confusing too because I think that's, like, a construct beyond these diagnoses, is how obsessive your mind is. Oh, I know what the inline thought was. I think obsessive minds, I think we're so vulnerable to addiction because we're just looking for something to turn off the obsessive mind and to get that moment of relief of my mind isn't spinning out.
PATRICK CASALE: Absolutely, yeah. And you know, if we look at OCD a lot of times of like anxiety management or ways to mitigate trauma response, of course, we want that obsessive mind to slow down or just stop and give us a reprieve. That's always what I was looking for, is like, can I just have a reprieve from my own self, my own thoughts, my own mind?
And it's the compulsion piece that is a struggle for me because if I'm obsessing about something, and ruminating, and it's just constantly on that loop, that compulsion to then take action is so strong. And it could be at night, right? Like, the obsessive thought of like, "I need to go check something, I need to go check something, I need to write this down, I need to write this down." And then, compulsive act, which happens at 2:00, 3:00, 4:00 in the morning, and it feels like you don't even have power over the compulsion because it's so strong, and that can be really frustrating.
MEGAN NEFF: And I think what you've just described, though, that really is the heart of OCD, right? And compulsions don't always have to be present to be diagnosed with it because there's [INDISCERNIBLE 00:10:01], but typically, like the kind of more classic presentation is there's this tight relationship between obsessions and compulsions. And the obsession just… So, our listeners, we can all be on the same page, that's like intrusive thoughts, images, or urges. And these are things that… So, the way that they're described clinically, they're ego-dystonic, meaning their intention with kind of how we see ourselves and our core values. So, if we value, for example, safety or not harming others, we might have an intrusive image of doing the exact opposite of that, of harming someone.
So, that's obsessions. Yeah, they feel like intrusive, uninvited guests who have just barged in. And they create a lot of distress and anxiety. And then, compulsions are something that function to neutralize the obsession and to kind of take down the anxiety.
So, like, for example, when I was a kid, one that I had, I would say goodbye to my parents in the exact same way when I'd leave for school. I'd say, "Bye, love you, don't die." And if I didn't say that exact thing, the anxiety was they were going to die. And there was something about doing that compulsion that it felt like I was like sealing them with safety. And so, the compulsion, what it does is it reduces the anxiety in the short term, but in the long term, it actually gives more power to the obsession, which is why OCD untreated tends to grow or life tends to get a lot smaller, and the anxiety in the long term gets a lot bigger, but it's why those compulsions are so hard to sidestep because it leaves us feeling like incomplete or just so much anxiety when we don't do the compulsion.
PATRICK CASALE: Yeah, what you just described is such a good example of what this can feel like because even as a kid, when you were doing this, I imagine if you were not able to say that in that specific order, that could really throw your day for a loop, where that's all you were thinking about for the rest of the day, that's all you were experiencing. Then all of a sudden, anxiety is going to start ramping up and intensifying. Then you're going to be distracted because the only thing you could think about is, "My parents are going to die. I didn't say this in this specific order."
MEGAN NEFF: Exactly, and this is where OCD and ADHD can be, like it's a common pairing, and it can be so painful because intrusions and those unwanted thought take up so much brain space. And like, this isn't probably the most affirming way of describing ADHD, but the mental imagery that comes to mind is like a beehive with the holes coming out. And so, like, my thoughts are often like getting out when I don't want them to, and it's hard to hold things in mind.
And then, when you have OCD it's like being attacked. Like, there's a… I'm probably mixing metaphors, but maybe like a hornet has come into the nest, and all of a sudden the hive is under attack. So, all my resources are going to, like, defend the invader. And then, any thoughts I'm supposed to be tracking are absolutely gone. Like, the bees have left the hive. Again, I'm not sure if this metaphor is working. But it's what came into my mind.
And I think that's why OCD ADHD makes such a painful combo, is the intrusions take up so much mind space, so much of our executive functioning, which is already strained because of the ADHD.
PATRICK CASALE: Right. And then, for someone who's experiencing something like that, that exact experience… And I think that's actually a good visual because, I mean, it makes a lot of sense where all of your attention would then need to focus on this one thing, right? So, ultimately, leaving you kind of exposed in a lot of ways, mentally, physically, etc., just being unable to focus, or process, or even support yourself in other situations, just thinking about how this can impact you, like as a child, as a teenager, as an adult, in the school settings, in the work settings, in social settings. And then, your executive functioning really takes a hit and diminishes, and ultimately, like, it can leave you really frustrated internally. There's a lot of internal, like, shame processing when you're like, "I cannot get out of this loop. Like, I cannot break this thought." Even if I recognize that this is a irrational experience.
MEGAN NEFF: Yeah, I think that is absolutely part of the pain of OCD is like, again, that ego dystonic part is there is often awareness this is irrational, or it's so, again, alien to our experience. But like, I don't know that I, like, would meet full threshold for OCD at this point. Actually, I probably would. It's just so much of my compulsions are internalized.
But like, one that I'll often fall into, so I send out an email every Sunday. And at this point, I'm sending it out to like 30,000 people, which is scary AF. And so, I will, like, even though I know, for sure, I logically know I have, like, no inappropriate files in my computer, but I will double check all the… not double check, I will, like, quadruple check all of the links. And I have this obsessive fear of, like, attaching something inappropriate to an email that goes out to 30 people, and I'll get stuck into a loop of triple, quadruple checking. I really probably need to hire someone to just hit the send button on those emails because that'll be like a stuck point, a point where it's like my brain gets stuck. And I'm like, I know this is irrational. I've literally checked this five times. Why am I still doing this?
PATRICK CASALE: Yeah, what ends up happening when you finally hit Send after that? Does it break that loop? Or is [CROSSTALK 00:15:50] obsessive, "Oh, my God, I'm going to get a response from someone saying, like, 'You sent this inappropriate thing.'"
MEGAN NEFF: So, I think I feel relief when I hit send because I've usually been kind of stuck in that cycle for a little bit. I will then go to my email and see the final sent because you can, like, send a test email, which I would have already done. I would have already tested. But I'll then go to my email and yet again, check it all. But at that point, it's been sent. And so, I'm kind of out of the loop. Again, because I'm very aware it's irrational. I'm very aware there's no, like, terrible link that I'm sending out.
PATRICK CASALE: That's a painful experience, though, because just something like that alone probably took a lot of mental energy, and a lot of time, and being able to prevent that or circumnavigate that. Is that word? I don't know.
MEGAN NEFF: I like it, whether or not it's real or not, it's a good word.
PATRICK CASALE: [INDISCERNIBLE 00:16:44] like, break away from that and focus energy elsewhere would probably be really relieving. But just the struggle to get out of that.
MEGAN NEFF: Yeah, yeah, absolutely, you know. And there's so many loops like that. And it's really interesting. Actually, for a while, I used to say, "Well, I had OCD as a child." But then the more I've learned about OCD and the internalized OCD, I'm like, "Oh, that's actually a compulsion I do." Like, I actually get a lot of intrusive memories and images, especially, memories of, like, awkward things I've done, or times where I feel shame about how I've behaved, and actually, have quite a few internalized compulsions around that. And again, it's one of those things I thought I was like, "I thought everyone did this." But yeah [CROSSTALK 00:17:35]-
PATRICK CASALE: What are some of the internalized compulsions that you have around some of that stuff? [CROSSTALK 00:17:39]-
MEGAN NEFF: This is where I get anxious. This is where I get anxious. Okay, I'm going to share this, but I'm claiming full, like, we get to cut this if I decide I don't want this out. So, one compulsion that I have, and I would say I think this is an OCD. It feels like it follows the cycle. It's not as clean as some of my other OCD experiences.
But one is if I have a memory of, like, something I said that I was like, "That was awkward." Or any kind of intrusive memory of it could be recent, it could be later, like, the thing I do right away, and it feels so fast, it feels unconscious. And actually, I've met with a lot of neurodivergent people who do this, and often feel shame about it. So, maybe it is good for me to share, but I'll cuss myself out. I'll say something like, "You stupid bitch." Or typically, I'm using the F word directed at myself. And it's so fast.
And at some point, I realized that when I do that it actually felt really similar to when I self-harmed in adolescence. And it's a way of I am a bad person, and I am punishing myself to equalize. I also think it's a form of emotional avoidance. I'm, like, trying to swat away the discomfort that that memory is bringing for me by, like, sharply cussing myself out.
So, this is something that pre-autism discovery I was probably doing several 100 times a day. My autism discovery really did help reduce that a lot. I think for one, I've just become much more gentle with myself, in general. I also understand those memories and those, like, why they come and why I feel so much shame around awkward moments or moments I'm not proud of.
And so, now, it's it probably still happens most days, but I'm much better at catching it and then kind of redirecting it or being gentle with myself. But it's still something that I experience. So, yeah, that's not like a classic, like, obsessive-compulsive, but the pattern of it feels familiar to me. It feels familiar to some of the obsessive-compulsive patterns I've done throughout my life. Like, in childhood it looked different.
So, scrupulosity OCD, or like the fear of being a bad person, that can be one flavor, and that's certainly one that I have. So, as a child, growing up in fundamentalism, anytime I had a bad thought, and I was raised to believe God was in my mind, like, judging all my thoughts. Every time I had a bad thought I would invite Jesus into my heart again to be re saved so. And I would do that like 100 times a day to, like, re-save myself because I had sinned or I had had a sinful thought. And that I can now see, like, that was an obsessive-compulsive pattern, for sure.
PATRICK CASALE: That's a painful [CROSSTALK 00:20:46]-
MEGAN NEFF: Do you know what's better Patrick? Like inviting Jesus into my heart or cussing myself out?
PATRICK CASALE: I don't know. Like, yeah, both are very different.
MEGAN NEFF: I mean, both are very shame-based. Both are like, it's about, like, I guess, the obsession there would all circulate around, like, being a bad person.
PATRICK CASALE: Yeah.
MEGAN NEFF: And both compulsions are trying to neutralize that.
PATRICK CASALE: And like you said before, right? In this atypical sense or this sense where people are having these thoughts and these intrusive experiences where it's like, "I don't want to harm my baby, I don't want to harm my baby." And then, you have a thought about harming your baby, then there's almost this compulsive act, right, to release it.
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: Go ahead. You look like you have a-
MEGAN NEFF: No, I'm glad you brought that up. So, I had postpartum… Like, when I look back at my life, I can see kind of spikes where OCD has been more prominent. And I had postpartum depression, anxiety, and then, OCD, as well, just all the postpartum [INDISCERNIBLE 00:21:48].
So, I did have intrusive images of hurting my children. And I wish there's more education around this. This is not uncommon, and it is so distressing when you experience it. And some moms will, like, put their baby down and not touch baby because they're so afraid they'll hurt them. Actually, one of my favorite, like, interventions when I was working within the perinatal, when I was working in an OB-GYN clinic, was to educate moms of like, if this thought is distressing to you, I'm not worried about you hurting your baby. Postpartum psychosis is when you're having those thoughts, and it's not distressing, and it's in alignment with, like, how you see yourself. If you think you're going to be giving safety to your child by… I'm not going to go down that route, that's really… But yes-
PATRICK CASALE: [CROSSTALK 00:22:40]-
MEGAN NEFF: That is a very common OCD intrusion in the postpartum period that can contribute to so much distress…
PATRICK CASALE: Yeah, and-
MEGAN NEFF: …for people.
PATRICK CASALE: I'm so glad you named that, that while you were working at this clinic, you were really an affirming source for these people because so many people don't want to say that out loud, right? There's so much fear and shame. And if I say this to someone, what's going to happen? Like, are they going to call child protective service if I have these intrusive thoughts about hurting myself at times? And like, but there's no compulsive need to act. Like, it's really hard for people to openly state these things to the public. So, it's a great point.
And I think when you're naming, like, these experiences that you've had where you've had to say these things to yourself, that kind of sounds in similar alignment to those intrusive experiences that people have as well.
MEGAN NEFF: Yeah, yeah, absolutely. And you're absolutely right. Like, you know, postpartum psychosis moments, those get a lot of news coverage. And so, I think there are a lot of parents where when they're having postpartum OCD, they don't have a reference point for that. Their reference point is the terrible stories they see on the news where someone has harmed their child. And so, you're absolutely right. There's so much fear about bringing these intrusive thoughts up, but I wish more would because, A, like, there's treatment, and there's support for this. And then, just learning, like, the fact that this thought scares you is a really good sign. Like even that in and of itself. And there's a name for this, that these are intrusive thoughts, yeah.
PATRICK CASALE: Right. And then, it's not like a unique experience that the person's having, that they're not a bad person for having thoughts. Like, I think that's a big part of it is like affirming that you are not a bad person. You don't actually have the intention to act like these thoughts are coming up, and that feels like a natural part of this process. And I think that's so important as well.
MEGAN NEFF: One way I've heard it described that I really liked is your mind is overmomming. Like, you're thinking about the worst case thing possible, and your mind is overmomming because it wants so badly to protect your child.
So, and I think that idea could be expanded to a lot of OCD. A lot of folks with OCD care a lot about safety, safety for self, safety to others. And it's like the brain is over safeting. It's like working so hard to ensure safety. And in the process, gives us a lot of pain.
PATRICK CASALE: Yep, absolutely, absolutely. One thing when you're mentioning safety that's coming up for me is the, and I don't know if I would put this in the misconception bucket, but that, like, all OCD folks are like germaphobes and concerned about cleanliness at all times. I think that happens a lot in the media where you start to see, like, hand washing, hand sanitizing, unable to use certain, like, facilities, being really cautious about certain things. And I think that's very true for a lot of people, but it's certainly not the case for a lot of people as well.
MEGAN NEFF: Yeah, yeah. I mean, again, there's a lot of different subtypes of OCD, and that's part of why it can be tricky to diagnose. And so, that would be contamination OCD. And actually, one of my children has had contamination OCD and still has it to some degree. It can be incredibly debilitating, but it's just one of several different ions.
And so, yeah, like symmetry OCD is another one. I had that as a child. So, I would be, like, sitting on a table, and if I touched it with one hand, it just didn't feel even. So, then I'd have to touch it with the other hand, and then I'd get pulled into a loop where like, I'm just, like, doing this with my hands where I'm frantically touching it until it feels just right, till it feels even. It wasn't even logical. It wasn't, like, it actually was even. It was a sensation of, like, this feels even. Or like I would do the same thing with my nose. I would twitch it to the side, and then I'd have to twitch it to the other side, and then I'd be like, twitching my nose in a loop until it was even, till it was just right.
PATRICK CASALE: I do that a lot with, like, how I arrange things and everything has to be, like, very specifically ordered, and structured, and symmetrical. Tablecloths on a table if it's a little uneven. I have this, okay, I'm thinking about this right now because I'm looking at my Shih Tzu sleeping. I have this blanket on the couch because he scratches the couch. But I tuck it into the couch, and he scratched it, or someone sat on it, and now it's uneven. I will be sitting there working, but I will be obsessing about the fact that it is uneven, and I will literally have to break what I'm doing to get up and, like, pull in, even it out. And in my mind, I'm saying, "Why does this have such a hold over me?" And like it's just going to become uneven again. Like, he's inevitably going to scratch it. Someone's going to sit. Like, whatever.
But it has so much power over me and that compulsive need to act and break up whatever I'm doing, whatever I'm talking about. I can even get distracted in conversations and be like… And my wife will look at me and be like, "Are you staring at the picture on our wall that's a little bit uneven right now while we're talking about something important." And I'm like, "Yes." She's like, "Do you need to go straighten it out?" I'll say, "Yes."
MEGAN NEFF: Yeah. So, that would be like symmetry and order OCD. And this is the one I think is so tricky to tease apart from autism because with autism there can be some kind of precision preferences.
PATRICK CASALE: Yep, for sure. I had a professor in grad school. He was, like, big into CBT. He taught a lot of our courses, unfortunately. But talking about like ERP [CROSSTALK 00:28:48]-
MEGAN NEFF: …exposure response therapy.
PATRICK CASALE: Yeah, prevention or whatever. And taking [CROSSTALK 00:28:53] in public toilets or who had, like, what do you say? Sanitation OCD? I [CROSSTALK 00:29:00]-
MEGAN NEFF: Contamination, yeah.
PATRICK CASALE: My brain is scrambled. And he would have them like, lick toilet seats and [CROSSTALK 00:29:07]-
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: Yeah, yeah.
MEGAN NEFF: So, with exposure-response, like, you have to kind of overshoot the exposure.
PATRICK CASALE: Yeah.
MEGAN NEFF: That's part of it?
PATRICK CASALE: Right.
MEGAN NEFF: Yes, yes. I've heard similar stories.
PATRICK CASALE: Yep, and they were like, "Yeah, we're just going to lick this toilet seat together." I was like, "Jeez, this is just fascinating." I'm really happy that I don't ever have to experience that. Like…
MEGAN NEFF: Yes, I've also heard of, like, eating food off toilet seats as a exposure. And, yeah, I know we're going to have some folks on who do like… So, there's a new treatment I've been hearing more about lately, inference-based CBT, which sounds like a more gentle approach, sounds like, in general, a more neurodivergent affirming approach. I do think ERP can be neurodivergent affirming when adapted, but I'm excited to hear from clinicians who are adapting these things to be more autistic-friendly.
PATRICK CASALE: For sure.
MEGAN NEFF: But yeah, exposure work is hard. It's really hard. And it's basically, yeah, you're kind of taking back your territory of saying, like, instead of the fear controlling you it's like, no. Like, actually, I'm showing up, and I'm beating you. I'm beating this anxiety. But you do, you have to overshoot the exposure, or, like, the fear. So, if your fear is toilets you, like, go beyond, which it's intense. ERP is really hard. It's a hard treatment.
PATRICK CASALE: I always view ERP, and I know we're going to have, like, an ERP specialist on in the series, and I would love to pick their brain on this. But, like, I've always viewed ERP as, like, you've gotten to this place of, like, last resort. Like, I'm so ready for this to no longer control how I move through the world, and it's been so freaking painful that I'm willing to put myself in a situation where I am going to have to overshoot whatever the fear is to be able to take some control back.
MEGAN NEFF: Yeah, I think that's so well said. Like, the treatment is painful, the treatment is hard. So, at the point where someone's doing that, OCD is painful and hard. And treatment is, like, the lesser of the two pains.
And this is where I do get annoyed. Like, so OCD faces a lot of microaggressions, in the sense of people will be like, "Oh, I'm so OCD." If they like having an organized desk or they like having clean hands. It's like, no, that's not OCD.
Like, OCD like, I think, my experience of it is it can be incredibly debilitating, and it makes our world very small, which is, also, I'm curious to your thoughts. Like, I do see some people embracing OCD as, like, a neurotype. I don't relate to my OCD that way. I do understand that there's, like, neural circuitry involved, and there's a lot of genetics involved, especially, if you had OCD before puberty, then it's like there's a stronger genetic basis for it. But like, I don't own it as part of my neurotype. I do own, like, having an obsessive mind, but I do know that…
And I'm not, you know, at the core of neurodivergent affirming practice is self-determination. So, if people want to, like, identify that way, like, that's for them. Personally, I don't incorporate it as a part of my identity that I'm proud of. I see this as a mental health condition that I live with, and that I treat, and that I am trying to have less power over my life.
PATRICK CASALE: Yeah, I agree 100%. I don't look at it as my own, as a neurotype. Again, self-determination. However, you want to identify or however you want to connect to any of your neurodivergent experiences is totally okay. I don't look at it as something that feels all-encompassing, though. Like, I don't think of it as, like, this impacts my behavior, my socially, my sensory. Like, I just don't look at it as that all-encompassing viewpoint.
I guess when I think about like all of this stuff that we've experienced, and you and I have very similar experiences, in a lot of ways, is like autism and ADHD kind of really drive the ship. They're really front and center. They really take up a lot of energy, and just processes, and traits, and experiences. And I always think about it that way. But hell, three years ago, I didn't think about either of them as that way. So, I don't know.
MEGAN NEFF: Yeah.
PATRICK CASALE: It's something to explore. But I like what you said about, like, not everyone is OCD just because you like a clean desk or you like clean hands. That feels very much like folks who have social anxiety, who are like, "I'm a little autistic." Right? Like, there's a little bit. But then it's like, let's zoom out. What is the reasoning for your action? Like, what is it doing for you to be able to have a clean desk or clean hands? Like, what is happening for you when you're socially anxious, versus, like, being autistic and being overwhelmed sensory-wise all the time? So, I think it is about looking at it from that zoomed-out lens too, to say, like, what is the meaning behind what your action or your process?
MEGAN NEFF: Yeah, absolutely, absolutely, yeah, yeah.
PATRICK CASALE: I'm trying to think of other OCD tendencies and traits. I experience a lot of my stuff at night, and a lot of it is, you know, obsessing about sleep and lack of sleep, and just the struggle in that experience, that rumination that comes over, the intrusive thoughts that come over can lead to compulsion, for sure, you know? And that's something I've experienced my entire life.
I remember like intrusive, like really bad nightmares and experiences as a kid. And even, like, to the point of almost, like, auditory hallucination. And when I was like 7, 8, 9 years old, where I would hear like a voice over and over and over again that would say, like, "Hello." And it would get louder and louder and louder to the point of I have to get up. And then, have a compulsive act to break that loop. And I would have to almost say out loud, like you were saying about your own experience before, like this is not real. Like, this is not happening. I would have to name it and say it and, like, go through a ritualistic experience to shut it off.
I, actually, ended up under the doctor at like eight years old because my dad was like, "I think my child is psychotic. Like, I think there's something happening at night that is creating, like, the psychotic process."
MEGAN NEFF: That is so interesting. So, we should maybe do a whole episode on this once, but there's been some interesting research about abnormal perceptions in autism. And it's more common for us to have abnormal perceptions. So, like, to hear things, especially. And it has to do with kind of how our neurons work.
But me too, I actually just realized a couple years ago that this was an abnormal perception. But sometimes, I'll hear music. Like, it happens when I'm really tired, and it probably only happens maybe once a year. And for a long time, I was like the narrative I had was I… And I realized that this sounds psychotic. My narrative was like, I think my brain is able to pick up radio wavelengths, and I'm hearing a radio in my brain.
PATRICK CASALE: Yeah.
MEGAN NEFF: And I was like, it was when I was doing the research on abnormal perceptions. And I was like, "Oh, I wasn't actually hearing a radio." Like, that was a hallucination of some kind.
PATRICK CASALE: Yeah, yeah. I think it's fascinating and it's unfortunate because, you know, all these experiences that feel so, I don't know this is not going to sound affirming, like strange or bizarre, or irrational when we're experiencing them ourselves. There's so much, like, shame, and vulnerability in just telling people this stuff, you know? Like, it took so much as a child to go into my dad's room and be like, "So, I can't sleep because I'm hearing this voice amplifying and getting louder every single night. And it's like ringing in my freaking ears. And I cannot go to sleep." And, you know, I think it's just one of those things that we tend to suppress a lot of the time, too because we just don't want to talk about any of this stuff publicly.
MEGAN NEFF: And actually, that would be an interesting kind of survey to do. Like, I wonder how many, and I think, especially, autistic maybe ADHD, too. Like, people have had a fear of… And I don't usually use the word crazy because it's like a kind of a slur of mental health. But in this context, I'm going to use it in quotes, like fear of being "crazy." I know I've, at times in my life, experienced that, especially, when I had PTSD because all my sensory stuff, everything was incredibly bizarre.
But I think between, like, OCD and in general, having more intrusive thoughts and images and then abnormal perceptions, I actually think it's a pretty common experience to fear, like, that we are crazy or going crazy, then I mean that in the psychosis. But I think that narrative we often say, the narrative I've said is like, "Am I crazy?"
And I think learning some of this stuff. Like, sometimes it is a sign of psychosis. And if we're having experiences consistent with psychosis, we should check that out. But sometimes it's like intrusive thoughts or is abnormal perceptions. And it's not actually psychosis, but it's like our neurons misfiring and being weird.
PATRICK CASALE: Yeah, yeah. And when you don't have any of this information, or the resources, or the language to put to it, it's really confusing, and it's really overwhelming. And it does make you have those internalized thoughts of, like, again, for those of you not watching this, like, "I'm going crazy. How am I supposed to talk about this? Who am I supposed to talk about this with? Who's going to get it? How am I going to be judged for even bringing this up to someone?"
I think, you know, there's still so much work to be done. And that's a different episode. But yeah, and it's just, like, the stigma of mental health that still exists in 2024. So, it's just, you know,[CROSSTALK 00:39:50]-
MEGAN NEFF: Yeah, and it's huge, especially, around psychosis. There's so much stigma around psychosis, particularly, yeah. And I'd also throw in paranoid thinking. That's another one that because of this, like, social isolation and victimization paired with rumination, autistic people can actually have a lot of paranoid thinking, and that can look like psychosis, or it could look like one of the kind of schizoaffective spectrum conditions, yeah.
Oh, okay. I'm leaping here a little bit. And I think when we have, I know Brittany's going to talk about inference-based CBT when she comes on, but I'm hearing this more from inference-based CBT folks, this idea that part of what predisposes us to OCD is not being able to trust our own perceptions because what's happening with OCD is we're often making inferences based on our imagination more than our senses. And I find that a really interesting take on OCD.
And I do think like, in general, both autistic and ADHD people, we struggle to trust ourselves, to trust our perceptions, to trust our narratives because what we're reporting and the feedback we're getting from our environment are often mismatched. We often experience a lot of traumatic invalidation around our sensory experiences. So, I think this idea of self-trust, fear of like, do I have a good grip on reality? I think this is intimately connected to OCD because, essentially, we're second-guessing our grip on reality. Like, when I triple-check the locks, or I triple-check the stove, I know I have checked it, but there's some inference there that tells me it's still on. Like, there's this faulty belief and I can't trust my perception of having just checked the lock.
PATRICK CASALE: Yeah, yeah, absolutely. And I think when you throw in ADHD or something else into the mix, and you're struggling with your focus, and maybe getting distracted, then you really can't trust yourself sometimes to say, like, did I actually check this thing? I do this thing in the shower where I have to say out loud, "You're putting shampoo in your hair." Right?
MEGAN NEFF: Oh, yeah, I do that too.
PATRICK CASALE: Yeah. And I will put it in my hair, and then I'll wash it out, and then I'll think to myself, "Did I-"
MEGAN NEFF: Did I shampoo?
PATRICK CASALE: Yeah. Like, I can't tell you how many days… I have, like, days where I probably shampoo three times. I'm like, "This is ridiculous." And I'll be in the shower, like, thinking this to myself, like, over and over and obsessed with that, too.
MEGAN NEFF: Yep, yep.
PATRICK CASALE: Yeah. I have another one where I lose the remote in our bed all the time, and I will say to myself, "I am putting the remote here to the right of my head." I will say it out loud. Literally, two minutes later, "Where is the fucking remote?" Shaking my sheets in my bed. And like, my poor wife she just shows looking at me like, "What is it like to be you?" It sucks.
MEGAN NEFF: Yeah. I feel like at the heart of a lot of these experiences, and I've started talking about this more, is a loss of self-trust. With ADHD it's, "I don't trust my mind. Like, I don't trust my mind to remember this, so I have to do it right now." With autism, I think, there's a lot of lack of trust in our sensory perceptions because they do tend to be abnormal compared to like the normative.
With OCD, there is a, "I don't trust the inferences I'm making. I don't trust that I'm good." And that lack of self-trust, I think, is some of the most painful aspects of all of these conditions because it's really hard to move through the world with agency when we don't trust ourselves, when we don't trust our minds, when we don't trust our perceptions, when we don't trust the stories we're telling ourselves.
PATRICK CASALE: Bam. You so often say these things that are very profound where I'm like, yeah, yeah, that's 100% right. So, it's a complicated, and challenging, and overwhelming existence, for sure, and a painful one in a lot of ways.
MEGAN NEFF: Yeah, and I don't know, maybe I'm working to move away from the discomfort of this emotion, but I do think when we know that, I think there's ways we can build self-trust. And I think-
PATRICK CASALE: For sure.
MEGAN NEFF: I think that's the power of like we talk a bit about late-in-life discovery, I think that's the power of it. I think since discovering my autism, my ADHD, I've been in the process of rebuilding self-trust, and with that has come agency, and with that has come a lot of healing. I'm still in process, but having the accurate narrative to understand my experiences, that is what kick-started the process of building self-trust. And that's why I continue and want to continue to advocate for late-in-life diagnosis or identification because I think that is so essential in that rebuilding of self-trust.
PATRICK CASALE: I agree 100%. I think… we're going to derail now.
MEGAN NEFF: As we do.
PATRICK CASALE: As we do, as we tend to do. That was our OCD episode. Yeah, rebuilding that self-trust is so huge and I think it's really, like, I'm trying to find the words, maybe, like beautiful to watch people discover it for themselves because I just think so often we go back to that, like, searching for the why, the meaning, the like, confusion around experience. And there can always be that grief of, 'I wish I would have found it sooner." right?
Like, I was having that grief yesterday about some chronic health stuff. I'm like, "Fuck, if my parents just, like, paid attention to me, understood that getting strep five times a year is not normal." Like, stuff like that. But in reality, discovery later in life has really helped me just put words to things, just put meaning and understanding to experiences, to start trusting my overwhelm, to start trusting my body. Sometimes it just feels weird to say because I so often can't connect to it, to trust my needs and set better boundaries. I don't know, for me, it's been really life-changing, and it has not necessarily made life unbelievably easy to navigate, but it certainly has allowed me to start to build some of that and start to build some of that, like, self-love, too, have a little more compassion for myself.
I had a friend who was recently on this podcast message me the other day and say like, "I am just really beating the shit out of myself for all of my ADHD symptoms, and like not being able to do these things, and track these things, and navigate these things." I was like, "We've got to be gentle with ourselves." Like, if ADHD and autism are disabling conditions, like we have to be gentle with ourselves, and acknowledging like, there are just certain things that we are really going to struggle with and potentially not be able to do.
And I know that it can be hard to relinquish, like, that control of it sometimes, but like that for me has been really helpful as well, to just be like, I've got to be easy on myself in this situation, instead of, like, beating the hell out of myself.
MEGAN NEFF: Absolutely. I love how you said that. Like, I started to put words to it and just, yeah, the power of naming things, especially, with what we've just talked about of like, we do tend to have a lot of abnormal experiences, perceptions, both within our bodies and minds, but also, relationally. And the power of naming. Like, this has a name. This is autism, or ADHD, or OCD. And it unlocks so much.
And I see that too, and I love witnessing that, like, when it unlocks gentleness. And, yeah, I was not at all able to be gentle with myself until I had these lenses to understand myself. And I understand it. I kind of actually see it. I was just talking about this the other day. Like, I think this is why it's so hard to release the inner critic is the inner critic is playing a protective role when you're an undiagnosed autistic, ADHD, OCD, human. It's protecting you from other people's criticism. And so, it's really hard to release that because, yes, it's harming you, but it's also protecting you from the shame of other people. And so, until you understand that, understand that it's because you're neurodivergent, and you're having these experiences, it's really hard to release that inner critic.
PATRICK CASALE: Yep, there's an IFS book called No Bad Parts.
MEGAN NEFF: I like that book, yeah.
PATRICK CASALE: Yeah, because it's kind of a percept. You know, that concept of like, yeah, this inner critic is really painful. It can be really harmful. It can also really protect us from the world around us when we're talking about putting words to experiences and saying this stuff out loud, or just saying it to yourself, or sharing it with friends and having other people say, "Oh, that feels really like relatable to me." And I think it allows you to kind of reduce some of that harsh criticism that comes with, like, this constant feeling of, "I don't really understand why I don't fit into the world around me." I mean, just to live in an ableist society doesn't solve all the problems, but it certainly gives you perspective.
MEGAN NEFF: Yeah, yeah. And I think that's a helpful, like, for those of us who can fall into all or nothing thinking, like, yeah, it's not some magical solving all the problems. But it leads to that self-understanding, which can lead to self-trust, which can make it a lot easier to move through the world in a way that we're gentle with ourselves, but it certainly doesn't…
Like, I'd love to have a before and after diagnosis story that's super clean. Like, before diagnosed was doing this, and then I was diagnosed, identified, and like all of the… Like, and I do have some of that like before after narrative, but it's messy. It's not like I magically stopped struggling with depression, or anxiety, or OCD, or like-
PATRICK CASALE: [CROSSTALK 00:50:35]
MEGAN NEFF: …words, cussing myself out during the day. Like, yeah.
PATRICK CASALE: But maybe it's like, gotten, like, this much.
MEGAN NEFF: Yeah, no. It's gotten a lot better. It's gotten a lot better. And I understand myself so much better and my family dynamics are so much better. And, like, there have been huge improvements. But it's not like a magic [CROSSTALK 00:50:55]-
PATRICK CASALE: It's not a cure-all, for sure.
MEGAN NEFF: Which, speaking of, can we hop back into OCD for a minute?
PATRICK CASALE: For sure.
MEGAN NEFF: I think one thing I do want to, like, make sure is clear. So, we don't talk about treating autism or ADHD. We do talk about supporting it. But with OCD, it is very treatable. I mean, there is that genetic component. So, I don't remember the exact citation, but I think it's about 50% of people with OCD will kind of continue to have it throughout their life it'll ebb and flow. But this responds really well to, there's pharmaceutical medication for OCD, there's treatments, which we're going to dive into in the series, both ERP and inference-based CBT, and there's other treatments. And so, OCD is very treatable in the sense of, especially, if it's at the point where it's like your life is very small because the obsessions have so much power. I just want people to know, like, this is a condition that has treatments, like, that work.
PATRICK CASALE: Well said. Super important point so that we can… You know, there is optimism out there, there is hope out there, there can definitely be treatment, and change, and difference.
I think going back to, like, do I consider OCD a neurotype? That's probably a reason that I don't necessarily identify in that regard because, like, if it is treatable, can I ever relinquish my autism ADHD neurotype? No. And I think that's something I think about too, but I really appreciate that you just named that because I know we can become sometimes doom and gloom, which I don't think this episode has been. I think it's been a mixture of both, which I like to have those episodes.
MEGAN NEFF: I like those two. I think they're very humanizing. And we've, like, shared a lot of personal…
PATRICK CASALE: Yeah, [CROSSTALK 00:52:46].
MEGAN NEFF: So, if this is the only episode someone ever listened to, they'd have an interesting take on us.
PATRICK CASALE: I'm super proud of you. And I know that's uncomfortable. But you know, if we look back at like episode one till now, which is going to be like episode 72 or '3, which is crazy, you know, one thing you wanted was to be more vulnerable and to share more of yourself. And I think you've done a really fantastic job. And I know it's not always comfortable, if ever comfortable. So, you don't have to take it in, and you don't have to receive it.
Anyway, I want to share a story real quick. Or you go first before I share the story.
MEGAN NEFF: No, no, no, go for it.
PATRICK CASALE: You were mentioning like looping. If we just tracked, like, visually where these conversations go. So, looping back to post discovery, understanding self better, not having this, like, magic fix erasure situation where everything's clean and everything falls into place.
So, my dad messaged me yesterday. You know he kind of has come to terms with his autism diagnosis. He'll never say that out loud, but, you know, from interactions. And we invited him to go to Thanksgiving with my wife's family. And she sent him a picture because he asked, how many people will be there? I did not want to look at this picture, and I wish I hadn't. But there's like 55 people who are going to be there. They're all like standing outside of this place together as a family, like from years ago. And she's like, "Oh, that's not even counting so and so, so and so, so and so." And I'm like, "Holy shit. Okay, I have to really mentally prepare for this to participate because I know she's asked me for almost 10 years to do this. I'm going to do it this year." But my dad messaged us, and he was like, "I don't think my body and my brain can handle that experience, so I don't think I can come to that." And I was, like, really proud of him for, like, at [PH 00:54:42] 66 years old just acknowledging and naming that, so…
MEGAN NEFF: I love that. That is really powerful, yeah. And speaking about putting words to things, often, when we start putting words to things there's a ripple effect. Our family members, also, one of my parents has slowly come around to identifying as autistic, and I think it's been a helpful lens for that parent. Yeah, the ripple effect.
And so, in my newsletter I've probably gotten a dozen or two dozen from like 60 to 88-year old's who are, like, just discovering this. And I often say, like, when I discovered this at 37 there's so much to unpack. I can't imagine being in my 70s or 80s and looking back at all that life lived without the accurate lens. And I just, like, when folks in their 60s to 80s are willing to reconsider their whole life, I would love…
Someone just asked, they were like, "Do you have resources for a 70-year-old?" And I was like, "Oh, I wish I did it." Because I want that generation to be able to connect. I feel really connected to our generation of lost autistic adults, but I'd love… So, if any listeners know of resources for-
PATRICK CASALE: Yeah, send them in. I also really love that. I think I've mentioned that to you, and this is actually the prologue of the book that I'm writing, but I talk about, like, this 70-year-old woman who came up to me during my keynote in Alaska and was like, "That was the first time I've ever felt understood in my entire life. Do you think it's worth going and pursuing a diagnosis?" And I was like, "If you're asking me that question, then I think the answer is absolutely yes. And I hope that it brings you some comfort or relief and understanding or just being seen."
I think that's so powerful, just being seen, and understood, and affirmed, and especially, like at seven years old, right? Like, going through an entire life of confusion and not being able to identify or put words to some of this stuff and always, like, questioning why, or beating yourself up for, that's a tender spot for me, too.
MEGAN NEFF: Yeah, yeah. We always somehow bring it back to autism. Autism is our home base. So, if it was a house, I would say, like, autism feels like my foundation. Or like ADHD is kind of the walls. And then, OCD is like an uninvited guest that barges in at, like, some seasons of my life more so than others.
PATRICK CASALE: Yeah, and then I would, like, sprinkle in, like, the fixtures, and the furniture, and the carpet or the flooring would be like constant chronic depression and maybe some [CROSSTALK 00:57:37]-
MEGAN NEFF: Why am I laughing at that? I'm just like, "Yep, yeah. Our houses are kind of pathetic." But yeah, yeah, anxiety and depression are in my… I actually kind of want to actually design this. Like, what do our neurological houses look like? Although, I like to think of depression and anxiety as guests too because I like to kick them out of my house, whereas autism and ADHD feel baked into my house.
PATRICK CASALE: That's fair, yeah, it's a wonderful visual, I think.
MEGAN NEFF: I think, you know what? Depression is actually like, it's an old man sitting on a rocker on my porch.
PATRICK CASALE: Shaking his fist at, like, people who get too close or make too much noise, yeah.
PATRICK CASALE: DR. MEGAN NEFF:
MEGAN NEFF: Yeah. And it's just kind of, like, always lingering there, but like, sometimes I can kind of forget he's there.
PATRICK CASALE: Right. Sometimes you can go outside, walk past him, pay him no mind, get to your car, and drive to wherever, yeah.
MEGAN NEFF: Yeah.
PATRICK CASALE: You're so good at creating these visuals. Like, you should create a graphic about that because it would certainly go viral and be very relatable so…
MEGAN NEFF: Or get so much hate, though, of like, "This is not how that's depicted."
PATRICK CASALE: Oh yeah, "My house actually has blinds made of anxiety and…" Yeah, whatever.
MEGAN NEFF: Yeah [CROSSTALK 00:58:52]. I would like to do that for my own. I want to make a mockup of my neurological house.
PATRICK CASALE: Yeah, would not sell on Zillow, but, you know, it would be…
MEGAN NEFF: Zero-star review. I do not recommend my house if I was selling it.
PATRICK CASALE: This was good today. So, I feel like we're at our natural conclusion.
MEGAN NEFF: Yes, yes.
PATRICK CASALE: We just talked for a long time. It's 1:47.
MEGAN NEFF: Well, my internet was part of the long talk. My internet didn't like that we were talking about OCD today. It was protesting.
MEGAN NEFF: Well, so this may be split into two episodes. It may not. I don't know. We just talked for an hour and a half. For everyone listening, we're excited to embark upon this series for OCD from a neurodivergent affirming lens. We have some great guests coming on. We have new episodes out on Fridays on all major platforms and YouTube. You can like, download, subscribe, and share. And goodbye.
