Episode 3: The Relationship Between Sleep & Neurodivergence

Show Notes:

Ever wake up in the middle of the night with the thoughts of “Damn. I’m not going back to sleep tonight” crossing your mind? 

Sleep and neurodivergent brains have a complex relationship, and many neurodivergent individuals struggle with insomnia, restless sleep, sleep paralysis, being light sleepers, and having the weirdest sleep schedule in general, if you can call it a schedule at all. 

Fatigue is often common and more intense for neurodivergent individuals, which can be hard on those who are already struggling with executive functioning.

If you find that sleep is a challenge or seems harder for you to get than others, then this episode is for you.

Top 3 reasons to listen to the entire episode:

1. Understand the relationship between neurodivergence and sleep disorders and challenges on a personal and clinical level.
2. Learn how to make the most of sleepless nights so that you can reduce the stress of your “time zaps.”
3. Identify ways to improve the quality and consistency of sleep.

Sleep challenges are something neurodivergent individuals will often struggle with, so we encourage you to explore what will help take some of the stress out of sleepless nights and help create the best environment for relaxation and rest.

Dr. Neff Resources: 

• Autism, ADHD, and Sleep: An Expert Guide on Neurodivergent Sleep: https://neurodivergentinsights.com/blog/autism-adhd-and-sleep
• Sleep Workbook: https://neurodivergentinsights.com/neurodivergentstore/p/the-neurodivergent-sleep-workbook

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Transcript

MEGAN NEFF: Good morning, actually, good afternoon. 

PATRICK CASALE: Good afternoon. Well, good morning to you. Can you hear me? 

MEGAN NEFF: I can hear you.

PATRICK CASALE: Yeah, I'm exhausted. Sleep is challenging.

MEGAN NEFF: Yeah, no shit.

PATRICK CASALE: It's like, one of those situations where you fall asleep, finally, and that's a challenge. And then like, you wake up at 2:00, 3:00 in the morning, and you know that nothing is going to happen. Like, there's no forcing it. You can try all the tricks in the world, all the fucking things that you can do. And it's still the same outcome.

MEGAN NEFF: Yeah, that is interesting. I have that too. Like, there's some wake-ups where you just know like, fuck, I'm not going back to sleep from this one.

PATRICK CASALE: It's hard because, I mean, I almost experience that every day.

MEGAN NEFF: Every day you have that? 

PATRICK CASALE: Yeah, like probably I might have good quality sleep, which I would quantify as like, five hours total, maybe like four to five times a month, and every other night is like-

MEGAN NEFF: Wait, how many hours? Five hours?

PATRICK CASALE: Four, five tops.

MEGAN NEFF: You have that, so wait, four or five hours, you have that four or five times a month? 

PATRICK CASALE: Yeah. 

MEGAN NEFF: Patrick, that's really, really bad. 

PATRICK CASALE: That's bad.

MEGAN NEFF: You don't need me to tell you this, but that's like, oh, my gosh. You're sleeping like you have a newborn but without the newborn.

PATRICK CASALE: Yeah. And it's been all my life, you know? So, it's challenging. And it's like, I constantly ask myself, like, how the hell do I even get through the day when I'm running on like, you know, a couple of scattered fragmented hours of sleep every night? And it's a great segue into what we're going to talk about today, which is-

MEGAN NEFF: Which is sleep.

PATRICK CASALE: Sleep and neurodiversity. So, you know, here we are. And I know we wanted to start recording as soon as we got in the room because we always have these conversations. So, I just want to welcome everyone to the Divergent Conversations Podcast. I'm your co-host, Patrick Casale.

MEGAN NEFF: And I'm Dr. McMahon. I mean, oh my gosh. Wow, that was weird. I'm Dr. Neff. That was my maiden name. I am Dr. Neff. I clearly have not fully woken up.

PATRICK CASALE: So, Megan is on the West Coast. It is about 12 o'clock here on the East Coast. So, Megan's waking up, I haven't slept. We're going to talk about-

MEGAN NEFF: We're trying to get our names right.

PATRICK CASALE: …the elusive topics of sleep while also trying to juggle saying our names correctly, and being on the air. So, we want to give everyone a real glimpse into what it's like every day as a neurodivergent person, entrepreneur, therapist, all the things, so today we are going to talk about sleep. Megan's going to take much more of the clinical side of it, I'm going to complain about how fucking tired I am and-

MEGAN NEFF: Oh, I'm going to do that too.

PATRICK CASALE: So, it's so challenging, right? Because our executive functioning is already having such a hard time as it is and then, through the mix, like, this inability to sleep, to rest. Like, I don't know about you, but I don't nap. I wish I could. I'm envious of all of you who can do that. I'm envious of my wife who like falls asleep and is like snoring with her eyes closed, like a minute after saying she's going to bed-

MEGAN NEFF: Oh, my goodness. 

PATRICK CASALE: And I'm like watching her like, "What the fuck? This is witchcraft. This is ridiculous." 

MEGAN NEFF: I know, I know. Yeah, my spouse has such a consistent sleep routine. He goes to sleep at like, between 9:00 or 10:00. And then he wakes up at like 5:00 or 6:00, he wakes up early. But he has like a solid sleep block that I'm so jealous of. I, for the life of me, cannot, even though I'm so exhausted all day, I cannot get myself to fall asleep before midnight.

PATRICK CASALE: Yeah, so what is happening for you? Like, you know, you're exhausted, you feel it physically, mentally, you know, you're tired. But you know, like, midnight still is six, seven hours away. What are you doing in that time period?

MEGAN NEFF: So, that's actually something I'm trying to work on right now because it feels like kind of a time's up, which I don't like, that impacts my mood. So, I'm typically working on something, I'm typically working on what I call bucket B work which is, like, I don't need to deeply focus. So, like, last night I was refreshing my infographics and getting them up on my website, and like kind of mindless stuff. So, I'm typically doing that kind of thing. Sometimes I'll get hooked into some sort of rabbit trail, which then keeps me up later, which is very common, particularly, among ADHDers. So, yeah. 

PATRICK CASALE: What's the most recent rabbit trail you've been on?

MEGAN NEFF: My most recent one is kind of fun. So, over the weekend… so, I have three talks in February that I'm prepping. And I think I've told that to you. And I have so much work I need to do for these in this week. And I was just really struggling. I'm like, "I know I should run through my slides. I know I should go record videos." And I cannot get myself to do it, which is not… when the urgency hits, typically, I'm able to get going. 

And I was talking to my spouse, I was just like, I was so tired. And one thing he said that was helpful. He's like, "You know, for February, you're actually doing pretty good." And he talked about how past January, February, he just knows, like, I'm kind of going to be a miserable person to live with during these months. So, he was saying, "You should, like, get on a flight and go somewhere sunny." Because I'm in Oregon, it's like the winters are, literally, depressing here. I'm not saying it metaphorically.

PATRICK CASALE: Overcast, gloomy, dark, gray, raining.

MEGAN NEFF: It's terrible. So, my most recent rabbit trail was looking into flights for like Hawaii, or California, or Arizona, and packages and try to figure out, could I get away for 10 days, sometime? So, I've spent way too much time not sleeping, trying to figure out a flight to go somewhere to get more energy, which is… There’s some irony in all that.

PATRICK CASALE: You and I have talked about, you know, for me the energizing contribution of traveling, and I still stand by this, and we should probably have an episode on this at some point of like, the neurodivergent travel experience, and why it can be energizing because I think it seems counterintuitive to say like, this autistic person really enjoys going out into the world, and traveling, and meeting people, and connecting but there's so much-

MEGAN NEFF: I don't like meeting people, but I like traveling.

PATRICK CASALE: Right, right. The stimulation piece, you know, it's just like the new location, the new environment, the new temperatures, the new sights, new foods for some people. You know, I really think that it can be so helpful in a lot of ways. And it sounds like you really need some warm weather in your life. 

I love rabbit trails that are travel related because I'm like, I get really wrapped up in like the fantasy of traveling and like all the places I want to go. What seems more interesting than the one I've been on recently, which was like Google searching, how to sell my group practice and like figuring out-

MEGAN NEFF: Oh.

PATRICK CASALE: Yeah, I know, and some of my clinicians are going to hear this and be like, "What the fuck?" It's just that, you know, you have a bad day and that's where your brain is, is, "I don't want to do this anymore."

MEGAN NEFF: Well, that's interesting. Both of us, our rabbit trails are fantasy related.

PATRICK CASALE: Yeah, mine always are, I think, for the most part, and it's worry related, or that it's like, you know, I'm thinking worst case scenario, and going down that road. But usually, it's fantasy related. And I think there's something to be said about that. Especially, for autistic folks where fantasy is relatable and maybe safe, and maybe there's the ability to feel playful and connection. 

And I think that's why I so often default to like, my wife knows when I'm checked out in January, February, or in general, if the Lord of the Rings, or the Hobbit, or Game of Thrones is on TV, she's like, "Oh, I'm not going to talk to you today." And I'm like, "Yeah, cool." I'm glad we have that understanding.

MEGAN NEFF: Yeah, yeah. Both of us, I think, sound really fortunate and lucky, and that we have spouses that understand us and like, my husband's the same. He knows, like, if I've come back from a speaking trip, or from a long day, or if it's February, or January, like, I'm not going to be very verbal and I'm going to have less energy. And he's incredibly supportive and helps with the kids a ton. But yeah, I realize not everyone has a partner who understands his energy fluctuations and will get, like, irritated at their partner for not being more verbal or not being more energized, which I think is a really hard dynamic when I see that clinically.

PATRICK CASALE: Yeah, I think you know, we were talking about autistic burnout last time we met and talking about if you have the resources to protect your energy, and to recharge, and to step away and do all the things and a lot of people don't, that's also a really great point that not everyone has that support in their lives, whether it's from partnership, or close friendship or someone just doesn't have to… you don't have to explain yourself to them, you don't have to kind of feel guilty about how you're not showing up or how you're presenting. 

And it takes time, obviously, in any partnership, but to have that mutual understanding where your partner, your spouse is not having these expectations of you or like, feeling resentful, or why aren't you talking more? Why aren't you engaging more? Why aren't you more present? And they just kind of know, intuitively, like, "Oh, this is just where Patrick or Megan is at." 

It's really weird. My sister's name is Megan. So, saying Patrick and Megan in the same sentence just felt really strange.

MEGAN NEFF: Mm-hmm(affirmative) brings up sibling associations, totally.

PATRICK CASALE: Negative sibling association.

MEGAN NEFF: Oh, okay. 

PATRICK CASALE: And maybe she'll listen to this one day and curse my name, too.

MEGAN NEFF: You're making a lot of people pissed off at you in this episode.

PATRICK CASALE: That's because I'm so fucking tired. I think that it just means like [CROSSTALK 00:10:33].

MEGAN NEFF: I was going to say that your filter's probably off. 

PATRICK CASALE: Yeah, there's no filter. It's just like that nauseating feeling of disorientation and sleep deprivation. And so, do you mind, like, just sharing for folks who are listening, why it's so challenging for those of us who are neurodivergent to go to sleep, to get consistent sleep? You make a lot of graphics about it. They're very helpful. I share them with my group practice staff all the time. 

MEGAN NEFF: Oh, cool. 

PATRICK CASALE: But I would love to hear more about that.

MEGAN NEFF: Yeah, absolutely. I don't know if you did this, after I was diagnosed, I started Googling every weird thing about me to see if it was possibly related to my autism. And sleep is one of the first ones I Googled because I've always had just weird sleep stuff, like sleep paralysis, I don't know if you've ever experienced that? It's really disorienting. And just insomnia and other sleep issues. 

So, it's one of the first things I researched. And it's really interesting because when a person is diagnosed autistic or ADHD, rarely are they also told, "And this co-occurs with this handful of sleep disorders." 

So, first, from a like neurological, biological, we're just more vulnerable to sleep disorders. So, things like, we tend to have a flattened melatonin curve, so that kick of melatonin a lot of people get that cues them to go to sleep, a lot of us have a more flattened curve, or we're getting it later in the night. 

Also, there's a gene mutation a lot of us have that influences our circadian rhythm. So, a lot of us have a delayed circadian rhythm or just a dysregulated one. And then we're more vulnerable to things like narcolepsy, sleep apnea, and other sleep obstruction disorders. 

So, biologically, there's a lot going on that makes us vulnerable. But then, outside of that, there's things like sensory issues, if you're a heightened sensory person getting comfortable at night, being woken up by a snoring partner, or by something outside of the house, so we get woken up more easily and have a harder time just getting comfortable. 

I'm curious, it's probably also related to our more reactive nervous systems, like, you have to be in a relaxed state to be able to enter deep sleep and a lot of us have more hyper-vigilant nervous systems. So, there's a lot of vulnerabilities we have that makes sleep pretty difficult.

PATRICK CASALE: Yeah, absolutely. And I'm glad you're able to share that that way for everyone listening because there's a lot of things going on beneath the surface that are impacting you. And I know for myself, I'm restless. I have that constant anxiety and nervous energy, and it's very hard to get comfortable, so deep sleep is not something I'm much, you know, familiar with because the slightest noise, the slightest sound, like, my dog getting up to go get water, like, my dog whining or snoring too. It's just, like, every little thing builds on itself and it's so hard.

MEGAN NEFF: Patrick, you have a terrible sleep environment. If you were my client, like, we'd be working on your sleep environment. It's terrible.

PATRICK CASALE: It's terrible. And we have, like, a senior dog who sleeps on a bed on the floor but she's restless at night and will get up , to drink water, and like I will hear her get up, and then you'll hear her like click-clacking through the house, and like drinking all the water, and then coming back, and like scratching her blanket to go to sleep and you're just like, "Oh my fucking God." Like, if I was just asleep for an hour and that's what woke me up it's just infuriating and it's challenging. And you know, temperature sensitivity, all the things that come with it, even like having that restless leg syndrome, and just being really uncomfortable. 

So, really trying to figure out ways to make your sleep environment more sleep hygienic, or you know, whatever works for you in terms of just being able to get some rest because it's so crucial, and you know, otherwise you're just kind of flying by on autopilot all the time. And it doesn't feel good to kind of move through life like that.

MEGAN NEFF: I'm still like, seriously, trying to figure out how you do it with four to five hours of sleep because you do a lot. And that sounds really painful.

PATRICK CASALE: Yep, it's really painful. The thing that I hate the most, like, I'm so used to operating on that amount of sleep, where I can push through, and have the conversation that we're having right now, and do what I need to do today without it being too overwhelming. 

But I used to have an active, pretty intense gambling addiction. And I can remember nights where I stayed at a casino till 6:00 AM, till the sun came up, and then drove two hours home and, you know, then you're trying to fall asleep with that, it's just that feeling of like, you're nauseous, you're disoriented, like, everything hurts. It's just uncomfortable, and the whole day is ruined. And, you know, you have a day or two like that every month. And thankfully, it's significantly less than it used to be where that type of situation would be, like, almost weekly, but now it's once or twice a month where you just don't sleep. And you kind of know as it's happening, that this is what you're in store for. And it sucks, I mean.

And you know, I used to try to force myself back to sleep, that never works. So, just getting up, getting out of the environment, getting out of your bedroom, and I'll go lay on a couch, or go like try to do some mindfulness activities, I'll try to like, even do some, like, exercise if I have to, if I'm feeling really restless, but like, I've never found the magic solution yet. I'm still searching.

MEGAN NEFF: Yeah, yeah, yeah. So, when you wake up, I was going to ask you what you do when you wake up at three, and you're up for the rest of the night? So, it sounds like you kind of go do something relaxing?

PATRICK CASALE: I try. I used to do the thing that I think a lot of us do or have done where you're like, staring at the clock saying, "Okay, it's three o'clock, but if I fall asleep right now…"

MEGAN NEFF: Which totally feeds the insomnia loop, yeah.

PATRICK CASALE: Exactly. Yeah, then I'll get four hours of sleep or five hours of sleep till 8:00 AM. And it's 3:30, then it's 4:00, then it's 4:02, then it's like, it just builds on that like that loop is… you can't get out of it.

MEGAN NEFF: Yeah, so I used to work in oncology. And so, I was doing more health psychology. And so, sleep was actually a big issue that I worked with folks on and protecting that relationship to the bed, which is such a huge intervention of, once the brain starts to associate the bed with a stressful thing, that just totally feels that insomnia loop, and exactly what you're saying, that anxious rumination of like clock watching, and then, the anxious rumination of, "I'm going to be so tired tomorrow." All these things that activate our sympathetic nervous system, making it almost impossible to fall back to sleep. 

So, it's really the, like, neuroscience, and the science behind sleep, and brain associations. I think is really fascinating. It hasn't helped me completely crack the sleep code for me, but I do find it really interesting.

PATRICK CASALE: Yeah, I mean, I do too. And I think, yeah, the rumination piece is really challenging. And that's why I encourage anyone who's listening to get technology out of your bedrooms, and you know, really try hard to only associate your bedroom with sleep, which is something, you know, a lot of CBTI therapists and sleep specialist would say, like, have a cool dark environment and, you know, get your… I put my phone in a completely different room because otherwise I'll go on and I'll just start scrolling through it or answering messages at night. And that's just going to activate again. 

And so, doing the little things, but even doing the little things, and still having these experiences can be really frustrating. And some of it, it feels like you kind of are waving the white flag where you're just like, I don't know what else to do at this point. I've tried hypnosis, I've tried sleeping medications, I've done sleep studies, and it's just like, all right, here we are.

MEGAN NEFF: Did they ever find anything with sleep studies?

PATRICK CASALE: No, no, no form of apnea, just really bad insomnia. And you know, it's the combination of what you said, it's the constant worrying, rumination, and the ability to get relaxed. And then it's the sensory stuff. It's the inability to like, just be comfortable. And once your anxiety starts ramping up, everything is uncomfortable. Like, the smell of your pillow, the firmness of it, the texture of your blanket, whatever it is, it's just like, it's hard. I wish I had a solution. I really do.

MEGAN NEFF: Yeah, no, and that's part of what, like, sustains a stress cycle is typically someone like you, or me or the average autistic, or ADHD person has tried so many things before they go to a medical provider. And then, the medical provider will often, like, list out these things that they've already tried, they've already researched. And that gets back to, I do think when working with sleep issues some level of acceptance that my sleep is going to be shitty, I'm going to have days where I feel really tired, I actually think is really important. Because otherwise, we get so locked into that anxious fight with sleep.

PATRICK CASALE: I agree 100%. And you're so right about like, the average autistic or ADHD person has done the research. Like, we do the research, we go down those rabbit trails, and like we figure out, okay, you can try this, okay, you can try this. And then when someone lists it out for you, you get kind of frustrated because you're like, "I've already done this stuff." Like, "Have you tried mindfulness?" "Yes, I'm a fucking therapist. I know how to practice mindfulness." "Have you tried doing A, B, and C?" And you're just like, "Is there any medication that you can give me that could be helpful?" Which isn't really helpful anyway because a lot of those drugs and medications are so harmful for you, the Ambien, all of the medications in the world designed for sleep are also designed somewhat in terms of anesthesia and putting you under for surgery. So, it's not a healthy way to get sleep. It's just like, I need to get knocked out because otherwise, I'm going to go into like hallucinations, and delirium, and all this stuff that comes with sleep deprivation.

MEGAN NEFF: Yeah, it's good when you're like, near psychosis to like, okay, I need one good way to sleep. But yeah, as like every night solution. It's interesting, I don't know if, and I just want to clarify, I'm not recommending this. I'm just curious, your thoughts. And I don't know if cannabis is legal, where you are. It's legal in Oregon. And a lot of people I work with get sleep relief from cannabis. And it makes sense to me just because a lot of the sensory stuff quiets down. 

So, that's been interesting to see some of my people experiment with and benefit from. I'll be curious to see as there's more research around that. And I'm not talking about, like, getting high. It's like a very low dose. There's even cannabis teas. I guess, yeah, you all don't have access to, [CROSSTALK 00:22:31].

PATRICK CASALE: Yeah, it's weird, you know. And we could probably do a whole episode on, you know, substances, and neurodiversity, but I'm all for the legalization of cannabis all throughout the country and the decriminalization. My wife, I'm going to get myself in trouble with this episode today, works for the U.S. government. So, like, I can't do anything in my house that is illegal in the state or I would definitely be trying every single combination under the sun. So, the most I can do, at this point in time, is like CBD melatonin gummy-type situations. 

But it's interesting, you know, and I want to… we could probably talk about this in lived experience too. But anytime I smoked marijuana as a high schooler, like in college, I got unbelievably paranoid, freaked out, like, obviously, you're not controlling the strain when you are purchasing drugs when you are in high school. However, I'm always curious about experiences because I've heard this from a lot of autistic people of like, their experiences with marijuana were really negative. 

But I want to see now that we have so much more, like, we know the source, we can kind of identify the strain for which purposes it exists for to see if that would be helpful because at this point, the only thing that's helpful and it's not helpful, I've talked to you about this, is in the short term alcohol is helpful at times because it will knock me out but then it will fuck up your RAM and your circadian rhythm and every-

MEGAN NEFF: Yeah, it's not good sleep.

PATRICK CASALE: Not good sleep. But sometimes you're just like, I need to fall asleep. And this is what I'm going to default to. So, you know, I think cannabis would be the lesser of two evils for sure.

MEGAN NEFF: I would agree with that, cannabis verse alcohol sleep. Yeah, this episode, we're going to get into trouble with this episode. Psychologists recommends cannabis. No, I'm not recommending. Do your research, talk to medical providers.

PATRICK CASALE: Or a harm reduction-based therapist in general. And I agree, you know, do your research. Don't take medical advice from us. But I do think that trying to figure this out for all of you listening, because I'm sure if some of you are feeling like you identify with what we're saying, and have similar experiences, and you know how torturous and hellacious it is. 

And Megan and I talked about our privilege and being small business owners last week, when it comes to autistic burnout, some of you have to get up and fucking go to work the next day, regardless of how much sleep you received. 

And I know what it was like working at an agency job or just being employed elsewhere, not getting sleep, and having to call in because I could not function. Like, I could not get up. I couldn't drive safely like, and it's so hard when maybe you don't have the ability to just say, "Another night where I didn't sleep." But I have to get up and go to work.

MEGAN NEFF: Yeah, yeah. Absolutely, absolutely. As you were talking, I like have visceral memories and truth of when my kids were young. So, my son, I now understand, it's because he has sensory issues. But he didn't take to eating solid foods till 18 months, which means he nursed all the time, and we co-slept, and he would be literally like, latched on to me nursing most of the night because he was hungry, because he wasn't eating. 

And I also had an autistic three-year-old who had a ton of energy, and we had no idea what was happening. So, I was like, barely sleeping. And I would wake up just… and I'd have to get up, right? I had a baby, I had a three-year-old, I was a stay-at-home parent at that time in our life. I was on the verge of like, psychosis at one point of, I remember I went up to my parent's house because I was like, "I just need a night of sleep." Because I felt myself, like I felt my grasp on reality slipping and it was it was terrifying. It was really terrifying. 

And yeah, I mean, sleep, it's just a beast. And yeah, so for people out there who have had babies and are autistic, oh my gosh, I feel for you. So, I had two C-sections, I had complicated pregnancies. And then, for the life of me, I could not sleep when the babies slept. I would have terrible, terrible insomnia. So, my recovery from my surgeries were incredibly hard. 

So, I think, it's interesting, there's very little, if you like Google autistic pregnancy, or autism and pregnancy, you get all these things where like how not to have an autistic baby. But there's very little out there about being a person who's autistic, and pregnant, and sleep, I think, by far, like, worst issue during my pregnancies and postpartum period, which just made that whole season of life so excruciating.

PATRICK CASALE: That has to be so hard in so many different ways because you still have these responsibilities of, I have to get up, I have to take care of my kiddo. Like, I have to do this thing and just losing your grip on reality, just being in that constant grief, that pain cycle, that exhaustion, I feel for you and anyone else who's had that experience. And it's hard, and you're right, you Google this stuff, and you're going to see all this shame-based ableism bullshit of like, how not to do this thing, how it's a negative thing if this is your experience, and there's just not a lot of research done on lived experiences in general right now.

MEGAN NEFF: Yeah, yeah. So, it's kind of depressing.

PATRICK CASALE: I was just like, staring out my window like, oh, yeah. I mean, it's so challenging because so many of us rely on how our brains work too. And I feel like I'm moving in slow motion when I have these types of days or situations where I'm so used to, like, my brain rapid firing and moving really quickly. And if you're moving through quicksand, is how I kind of experience it, where like, everything just feels delayed and takes a bit longer to process or respond to. 

I got some messages today from my group practice staff, love you all, not selling it, promise, where I had to look at it like five or six times to be like, "Wait, what is this person asking me." And like, now that it's halfway through my day, I'm like, oh, it was actually like a really simple question to respond to. And I couldn't put those pieces together.

MEGAN NEFF: Yeah, yeah. Well, and for people who, like, control, actually, I thought about that too when we were talking about cannabis, I wonder if that's part of the paranoia for some autistic people, is it's like you're losing control of your thoughts and ability to put things into sentences. But with sleep deprivation, the loss of control of like being able to organize our thinking, I think that can feel really claustrophobic, especially, for autistic people where we value control a great deal. 

PATRICK CASALE: Sure.

MEGAN NEFF: Yeah, I know for me part of what's so hard on us, like after a bad night of sleep, I can't be as productive and I feel really bad when I'm not mentally productive. It feel… like, I have this constant kind of existential awareness that time is passing and I'll never get this time back. And it leads to this kind of anxious need to always be doing something efficient or effective with my time. So, when I have a shitty night of sleep, and then the next day, I'm like, "Well, this is kind of a waste of a day." 

And so, then I've got this double, like two depressing things happening. One, because I didn't get sleep, my body's more depressed because of all of the sleep chemicals that… what the brain does during sleep. But then because I'm not being productive, which is what gives me a sense of accomplishment and like a mood boost, it's just extra. 

One thing that helps me is I will tell myself, like, "Don't trust your brain today." In the sense of like, whatever you say about yourself or your future, it's going to be filtered through this depressive lens, so just don't trust it.

PATRICK CASALE: Yeah, I love that. That's so helpful for me and probably for so many people listening. Because I think, you know, this is how my brain is working right now, as you're saying things and I'm like, "Oh, we could do an episode on that, oh, we could do an episode on that." Which is great. So, like, that's how scattered I feel. 

But I think that productivity piece is important to address because so many of us, we want to be productive, we want to have control over our day-to-day. And we get a sense of accomplishment for it, that dopamine hit is real for sure. And so often it's misidentified and wrongfully associated with like, hustle culture and like, just obsessed with achievement. And it's like, no, no, no, no, no. This is actually like how I feel a sense of self. Like, there's that sense of pride fullness. It's also like checking the thing off the list. And that's really helpful. It has nothing, very rarely, I don't want to use blanket statements. It very rarely is about like hustle culture, and grind culture, and like the next achievement, and the next achievement, and the next achievement. And I think that gets wrongfully missed a lot of the time.

MEGAN NEFF: Yeah, yeah, absolutely, absolutely. I was actually just thinking about this the other day, how I spent… so I was in psychodynamic, psychoanalytic depth therapy for three years before my autism discovery and then diagnosis. So, there's a lot of things I was trying to figure out about myself. And one of them was this inability to rest. And like exploring family of origin issues and trying to figure out like, what is it either in my childhood or myself that like, I cannot just be. Like, that is very, very painful for me, just being. And then realizing like, oh, that's ADHD. And maybe there's other depth things that layer on top of that, but at the end of the day, there's a neurological reason that when I'm playing a board game with my children, and my kids like, not realizing it's their turn, and I get impatient, I'm like, "It's your turn." There's a neurological reason for that.

PATRICK CASALE: That's another great episode. I think we should do that next week, about like, what you just said is so profound and it's so vulnerable too, of just like, your lived experience of how painful it is to not be able to just be or to really struggle with that in general. And I struggle with that too. And I imagine most of you who are listening also have a similar story or a similar feeling. I have always been described by parents, by friends, by early childhood, you know, folks who were in my life as someone who was not comfortable in their own skin. I was always, like, moving or doing something, and it's still true today. Like, I struggle so much to be present, or in the moment, or just experiencing life as it's happening. 

And the shitty thing about being a mental health professional and also an autistic ADHD person is you like, you can't always practice what you preach, in my opinion. And like we don't in this profession, a lot of the times, but even the things that we know to be true about like mindfulness, and stillness, and self-compassion, and all the buzzwords that we like to use, I fucking hate it. Like, I can't do it. And I try. And then you can create this like, inner frustration, shame spiral situation where you're like, why can't I just do this?

MEGAN NEFF: Yeah, yeah. Which then gets reinforced when we maybe go to a therapist and get taught these things. Like, you were saying earlier, like, "Well, have you tried this? Have you tried this? Have you tried this?" And A, like, maybe we've tried them, but B, we've tried them and they're really, really hard for us. 

So, I don't know if I came up with this term or if I learned it somewhere, but I actually started using it before I even realized I was ADHD, mindfulness on the go. I really like it, it's been because I have alexithymia, mindfulness has been huge for me because I know how I'm feeling because I'm identifying what scripts are playing in my mind. 

But I'm not sitting there doing like a 10-minute mindfulness exercise, it's like, as I'm going about my day, it's oh, what script is playing right now? It's just, I'm entering a different, like mind space, but I'm doing it on the go. And I find things like slight adaptations like that, of just take mindfulness and then find a way to do it on the go, or to do like, different versions of it, I think is really helpful for ADHDers, it's just, we're not trained as clinicians, how to adapt our interventions for ADHD and autism.

PATRICK CASALE: I love that, and if you did come up with that, you should trademark that shit and make that your own. But that makes me remember last week when we were talking, and you had your smoothie in your hand, and you were talking about like, just mindful of the sensation, the temperature of the smoothie, if you take a drink of it, like if you put it down, the weight of it in your hand, those are things that you can adapt and put into place instead of saying to yourself, "I've got to do this mindfulness activity for the next 10 or 15 minutes." And sit here. And I'm not having a fucking revelation or experience."

MEGAN NEFF: And feel like a failure because I can't do it, because my mind is all over the place, yeah. 

PATRICK CASALE: Exactly. And then you go to your therapist, and they're like, "Oh, did you try to take away your distractions? "And you're like, "How do you do that?"

MEGAN NEFF: Like, my mind is a distraction., yeah.

PATRICK CASALE: My entire existence is a distraction. 

MEGAN NEFF: Yeah, yeah. Okay, so I'm going to make a plug. And I like feel kind of sheepish giving an intervention because we've talked about how dismissive it can feel. And so, I have a sleep workbook. And I do worry about that. Like, people have told me it's helpful. But I also worry, like, I am talking about some of the conventional strategies. And I worry that I'm setting people up for those feelings around, I'm trying all these things and it's not helping. 

But here's one intervention that a lot of people find helpful. It's not going to be helpful 100% of time. Again, there's got to be some acceptance of like, we're just going to have some shitty nights of sleep. It's what has helped me the most, in addition to, like, my sleep environment. 

Cognitive shuffling, have you heard of this? It's really helpful, especially, for those of us with busy minds because it's like, something like counting sheep is not nearly active enough. So, cognitive shuffling, there's a few apps that will do it. Like, mySleepButton walks you through it, or you can do it yourself. So like, you would take a word like kitten, or, actually, I'm trying to find a word that doesn't have a double letter in it, ocean, and you start with the letter O, and then you think of all of the words you can think of that start with O, so like open, octopus. And then once you've expired that you move on to C, and you do all the words that you can think of that start with C. 

And what this does is it shuffles the brain enough and it fragments it that you can't have busy mind going at the same time. And it's mundane enough, it kind of mimics the first stage cycle of sleep by jumping from idea to idea, and so it can help with sleep onset. It's what I do when I wake up in middle of the night and I'm like okay, there's hope I could fall back to sleep, I used to do cognitive shuffling. And I actually, I would say eight times out of 10 do fall back to sleep when I'm using that.

PATRICK CASALE: That is a wonderful strategy. And it sounds like that would actually be so helpful. I'm writing it down right now, what was the app that you mentioned?

MEGAN NEFF: mySleepButton. And that's what I used first. And I think it was developed by neuroscientists. And again, it mimics that first stage cycle of sleep. What I also do, if someone needs an added layer of complexity, and if they don't have a fantasia, actually, imagining the thing, so like, for me, I'll do that, I'll be like octopus, and then I'll imagine either drawing an octopus, or I'll imagine an octopus. And then, the next word, like open, I would maybe draw a door opening in my mind.

PATRICK CASALE: I love this. And I'm writing this down too because I had one of my group practice therapists message our group chat today just disclosing like, massive, massive sleep issues, and struggling significantly, and wanting solutions. So, I'm going to share that immediately when I get off here because I think that is so helpful. 

And you're right, like, the simplistic like count sheep, or count backwards, or do these things, it's not stimulating enough, it's not getting the brain to really settle down as much as it needs to. So, I really love that solution. 

And I think you should plug your workbooks whenever the hell you want on here because you've worked so hard on these things. Like, Megan's workbooks are just unbelievable resources at your fingertips with these solutions, and these strategies, and these explanations. And Megan's deep dives that she's doing, you know, late at night, or whatever the hell you're doing these things. And I mean, I am always very impressed by just what you're creating. And as a colleague and a friend, I just really want to say that, and name that because I share your resources all the time with people.

MEGAN NEFF: Oh, well, thank you. Thank you. Yeah, that's the one workbook, maybe I should add, like, a disclaimer to it, there are a lot of strategies that I walk through, because for me, like learning new strategies they don't all work 100% of the time, but they have helped me improve my seatbelt a lot. So, I want people to have access to them. But I do worry that learning all these strategies, and then if they're still struggling with sleep, that that will just perpetuate the shame spiral.

PATRICK CASALE: I think that's with any of this stuff, for all of you that are listening and struggling with some of this. The acceptance piece, like Megan, mentioned a couple times is so crucial of like, I'm going to try these things and we're going to see what sticks. And having acceptance of or having a lot of shitty nights or hopefully less shitty nights than you need to.

But you know, I think when we hear like, this is what you should do, this is what you're supposed to do and then it doesn't work, it just creates further division, right? For those of us who already feel like, "But nothing works, why is nothing encapsulating my experience?" So, we see you, all of you that have had those experiences at your doctor, at your therapist, with your friends, colleagues, like we see you, and we know how shame-inducing it can be when it feels like you don't get it, you can't figure it out., this isn't right for me.

MEGAN NEFF: So, I'm having a thought as I'm listening to your talk. I think a lot of us have like a lowercase traumatized relationship to sleep. So, if we put sleep in like a relational term, and we think about if we zoom out from all these strategies, and these skills and we think about what is a person's relationship to sleep? If a person has a traumatized stressful relationship to sleep, and then if that gets reinforced by their efforts to improve it, like through medical visits, or through the different strategies they're trying, sleep is always going to be difficult until you heal the relationship to sleep, which is why I think acceptance is so important because that lays that framework of, I'm going to make friends with sleep. I might not like that sleep is an issue, but I'm going to heal my relationship to sleep because if we have a traumatized, strained relationship to sleep, sleep is always going to trigger stress associations, which is going to make sleep so incredibly difficult.

PATRICK CASALE: Couldn't can say it better myself, I agree 100%. And that's just really, really wonderful advice for everyone listening. And I'm going to take a lot of Megan's advice tonight and try to start implementing some of this stuff. Yeah, I love that. So, thank you for naming that and just kind of sharing that too. 

I don't know what I expected today, but I think this went pretty well even with the divergence going on, so I think that this was a really good conversation about a really challenging topic. And I'm sure we could have more conversations around this topic and expand on it as well. And, you know, answer your questions, and go more in-depth with the strategies and just really honing in on that acceptance piece. I think that's the big one that I'm coming away with, is the acceptance of your brains work differently, your regulation, your body's regulating differently, you're experiencing things differently, and some nights are just going to fucking suck, and just making peace with that it's not you, it's just we've got to adapt and figure out some strategies that work, specifically, for your experiences too.

MEGAN NEFF: Absolutely. 

PATRICK CASALE: So, for everyone listening to the Divergent Conversations Podcast on all major platforms, new episodes out every single week. We appreciate you showing up and we appreciate you just trying to make it through today and figuring out what comes next and strategies that work for you and specifically, for you. And we will see you next week. So, goodbye.