The Pain Nobody Sees: Sujai Johnston on What It Costs to Get Through a Day Autistic

Hello everyone, and welcome back to the Energy Economics Podcast for Parents. I am really excited to welcome somebody that I've been talking to for a few years now who, um, who has a lot of great insight into parenting and neurodiversity. Uh, Suje Johnston, welcome to the show.

Hi. Hi, Christopher. Thank you very much for having me. It's great to be here. Yeah, I'm Suje Johnston. I'm a certified parenting coach. and I've been working with families for about 10 years now, and I'm autistic myself and have a neurodiverse family, and yeah, I'm excited to be here. I run a community on Facebook, Gentle Parents Unite, and I also run a school community, a paid community for getting support in addressing the stuff inside ourselves so that we can break those cycles of abuse and really show up for our kids, our families, our spouses, our loved ones in ways that are in alignment with who we are. And so that is a paid community, and it's a really, really incredibly supportive site and great community. We do 2 calls a week and a whole bunch of other great engaging content.

So good. We'll talk about how people can connect with you, join that community and more toward the end. But for now, let's focus on the neurodiverse aspect, right? Like you mentioned, you're autistic. Um, so how does that present to you in your life currently?

I've learned a lot of tools. It's interesting because I've learned a lot of tools over my lifetime to kind of be able to manage the things in my environment that cause a lot of stress, which is Really helpful. You know, um, I have a lot of sensory issues, some of that because I'm autistic and some of that because of like CPTSD, which the sensory stuff, especially the sound sensory, they can be really interrelated.

Yeah.

Um, so, um, you know, I've learned a lot of tools for like managing my own limits and boundaries and like My sound input and sensory input and all that stuff. And at the same time, like, if I am exposed to too much ongoing stress, like, still even at like 48, I'm totally capable of having a giant meltdown and like not being able to self-regulate and all of that other stuff. You know, and then there's the other thing I find about all the tools and stuff is that sometimes it feels a little bit like masking, like we're trying to be overly nice or, you know, overly this or overly that to overcompensate for perceived personal self-deficits, right?

Mm-hmm.

Um, things that we may have perceived because of our own takeaways from past situations or from things that, you know, other people may have perceived and things like that. And so a lot of times, um, as autistic people, I think we'll grab on extremes to try and be socially acceptable. And so then a lot of times, if we're doing that, then a lot of times our tools almost become masking of who we are. So, um, a lot of for me too is like an unmasking so that when I feel like— one thing I do when I get really deep in conversation is I'll start rocking back and forth like this, and that's a stim.

That's fun.

But it's a stim I've been very, very, very shamed for, and, um, it's one that I, you know, consciously I, I won't do that. And so a lot of like Things like that. I'm kind of learning to reclaim them and be okay and comfortable with them. Like, if I'm really telling you something from my heart, I'll probably start doing this. I don't want to have like a thought about that being socially unacceptable interfere with like this, you know, amazing thing that I'm ready to info dump about. So.

Yeah, you're touching on some important stuff. Without going too deep into them, and I think one thing where you're talking around is this shared experience. You've used the word we quite a bit, right? So this shared experience of what it's like to be neurodiverse in a world, well, that isn't. How would you describe that?

So the primary thing that I would tell people is that Being neurodiverse in a world that not only wasn't built for us, it was built to exclude us. It's actively causing pain. And when you see an autistic person or a neurodiverse person who is melting down or getting upset and all of these other things, it's not because they're weak emotionally, it's because the world is actively causing them pain. And in fact, they're under so much pain and stress and pressure from things that a lot of people have no idea about. Like the idea that a bouncing ball, just the sound of a bouncing ball, could cause somebody with sensory sensitivities a lot of distress. And see, our pain— and we don't really think about it like this— But when we're in stress, when our brain is sending a stress signal to our bodies, that manifests as physical pain, tightening up of our stomach muscles and our chest muscles, our shoulder muscles. And the more that we're trying to control that and be okay, let's say, you know, for example, the sound of a bouncing ball, for me, it's actually a giant trigger that's intertwined with my PTSD. Where, like, the more we're trying to just be okay with it, the more pain and pressure we feel because our brain is sending those signals to our nervous system that we're not safe. And so, Mm-hmm. Neurodiverse folk in this world, they're experiencing physical pain that a lot of people just really, they don't grasp that and they don't understand that. And they're managing that pain. All day, every day, from the time they get up to the time they go to bed at night. And there's certain things in this world that really weren't designed for us and are particularly damaging, like a lot of, like, institutionalized public places like schools and hospitals and places like that where, um, you know, sometimes some of us have had to spend a lot of time. Those kinds of places, they have so much of this different kind of stimuli and input that's causing the distress that, um, it's like everything we have within us to actually be able to live with that much pain in our bodies and nervous systems throughout the day. So.

I appreciate— I really appreciate you speaking to that. That's a bit of what I was alluding to, and I think it's important to note too, um, and, and certainly if you have different information than me, I definitely want to know. But from what I understand, being autistic myself, that's also because of just what's triggered in the brain. So—

Hello, puppy.

So when the, um, when the amygdala is triggered, which is all the emotional centers, for us as adult, as adult neurodivergent people, that center is actually much larger. And it doesn't, it doesn't go to the, like the reaction, the response from sensory input doesn't fire as intensely at the prefrontal cortex or any of those other higher functioning areas. So it is literally a wiring thing. It is literally a wiring thing between between the input and the pain. Like, it's not a thing that is like, I'm choosing to feel pain. It's, it's almost like every piece of input is like a searing hot burn in a sense, in some cases. Would you say that's accurate?

Yes, absolutely. Yeah.

And for those of you who, who can't see us, uh, Sujay just had to deal with Dogs and people, so the pausing in my voice was patience, special accommodations. And you see this stuff with kids too, right? Like, this isn't just an adult thing.

Yeah, yeah, my older kids, so they just got in from working. So yeah, I have a whole long range of children from adult to younger, younger child. Those are some of my older kids. Okay.

These behaviors we're talking about, um, do you see in them?

Um, yeah, absolutely. Um, it was my— it was actually, you know, I lived most of my life not understanding neurodiversity or even knowing that I was neurodiverse. And it wasn't until my 19-year-old was about 12 and we were Experiencing a lot of what at the time we perceived were behavioral issues that were tied into the way that the world was treating him. And that has been a real journey for us in learning about who we were. That diagnosis was the beginning of the discovery. And it goes this way, I think, for a lot of parents, um, is because we're learning more about neurodiversity, um, a lot of parents will think, oh, maybe perhaps my child's neurodiverse. And, um, the more we know, the more we're discovering it's very hereditary, it's a brain type. And oftentimes when our children are neurodiverse, um, then We ourselves are also neurodiverse. And so an entire journey unfolds from seeing the things, right? And it's actually, for myself, before I knew, before I understood— first before I knew, and then it took a minute before I understood. But between the times before I knew and before I actually understood, Life was a lot harder, and that stress and pain was way more in the forefront. And once I got the big picture, everything just kind of fell together. And so much of that stress and pressure can be taken off because it's— a lot of it is environmental stuff, and we can remove environmental layers, and then suddenly there's 50% less stress, 50% less pain, and life feels a little bit more comfortable within parameters that we set for ourselves.

Good. Good. So what is, when you say it could become a lot easier, are you referring to the environment or something else?

The environment is a big thing to manage for neurodiverse folk, I think. I think for anybody, having a comfortable, safe environment is really important, but there's environmental factors that can really contribute to, like I was saying, like the sensory input, whether the lights are too bright or too dim, whether it's too loud, there's different noises coming from all these different sides. And part of this is social because we have been Trained, for lack of a better word. I think training is actually a very good word for it, to ignore, to ignore our signals from our brain to our nervous system that something is bothering us. And so we spend a lot of time ignoring those pressures. And every time— so let's just say, for example, we'll go with the bouncing ball example, because like Examples are good. And stick on a form here. But so, you know, let's just say that the sound of a bouncing ball really triggers something inside of you and your brain says, hey, there's a danger here. And it sends that signal to your stomach and your stomach tenses up and says, hey, there's something here that I don't like. Now, if you keep ignoring that, your brain gets louder and louder and louder. Until like it starts to move up. It sends that signal first to somewhere lower in our body, like our gut, and then maybe into our lower backs, and then into our chest. By the time that signal is reaching our neck and our faces, when your face starts to burn and your eyes start to water, your ears are like burning red, and you, you feel like your voice is getting lost in your throat, like that's because we've been ignoring Usually, sometimes we trigger 0 to 60, but not as often. It's often when we've been ignoring a signal that our brain's been sending our nervous system, and our brain keeps getting louder and louder with our nervous system saying, make a change, do something different, move, quiet the ball, whatever it is, right? And so, yeah, a lot of it does come down to managing your environment. And trying to create an environment that feels comfortable to you, because in the meantime, you're going to have a lot of stress signals in your body, and they're just going to keep getting louder and louder until you do something to make a change. And sometimes, if it's like a bouncing ball, it probably isn't like to me it sounds like impending doom. Boom boom boom! But it's probably not that. It's probably some kids playing basketball, and it's probably like a. Positive thing. And so if it's something that's an internal trigger that we don't really need to address that much, like the sound of a bouncing ball, we can talk to our brains about it. Be like, yeah, you know, that is safe. You're okay. And then your brain in turn pays attention and sends a signal to your nervous system that it's okay to relax and be comfortable again. Yeah.

So, so you're saying we can not only reprogram— well, you're saying that in addition to the environment, we can reprogram that nervous system response over time, right?

Right, right. But I wouldn't suggest reprogramming it on something that is currently still dangerous. So it's an important nuance because sometimes, you know, like if you're still living in a situation where people having like, you know, people getting snappy leads to them yelling, then you don't want to tell your nervous system that you're safe in that situation because then And you're just kind of lying to yourself. So that's an important nuance.

Let's talk a bit about that as it pertains to the elephant in the room, which is the fact that you and I are both autistic and we are a minority. Not anymore really, but certainly in a sense. So, you know, the people that don't get this, the parents who are listening or watching who are like, why the F is my kid a crackhead sometimes? Why is he so You know, why does he blow up over the smallest things? Or why is he so obsessive about where his toy goes? Or whatever, whatever those— like, first, what are those common judgments and misconceptions that you've run into with parents? And then what would you— how would you respond to them?

So, I mean, Honestly, the common judgments are vast. And the most common thing that people with a misconception of what autism specifically and neurodiversity as a broad overview of a lot of different things is that people tend to think That it pertains to intelligence. It doesn't. It does not pertain to intelligence. Autistic folk can be equally as bright and intelligent and have all kinds of amazing things to add to a conversation as anybody else. Um, it, it really does not pertain to Whether somebody's capable of understanding or grasping concepts or putting things into play or any of those things. It certainly does mean that in some areas they might be a little bit behind their peers, or it means that maybe they're going to be struggling more with some of this stuff that causes autistic people some pain. But, you know, the misconceptions around intelligence, emotional regulation, and, you know, another really big one is around the social aspect and how autistic folk, they don't make friends, they're not empathetic, a whole lot of really harmful ideas, and none of that is Actually true. Now, it is hard for different people to connect with each other on deeper levels because they don't click or connect. And so it's quite possible that, like, neurotypical folk might have a harder time connecting with autistic folk and vice versa. However, autistic people generally connect really well in their communities with the people who have a similar brain type. And so their minds are gonna, like, work through processes in a similar fashion. And, you know, empathy is an interesting one too, this lack of empathy. I feel that a big portion of the idea— one second, my kids.

I can— they're not that loud on this side, if that's your concern. All right guys, so just to let you know, um, children are being children, and so she decided to step away. Um, looks like she dashed out of the room, so I imagine she will be dashing back in very shortly. And, um, maybe we cut this part out, I don't know, but we're waiting.

I guess I picked a Grand Central Station time of day around here.

They're not that loud on this end. I don't know if you were having trouble concentrating, but, you know.

Yeah, he kept saying he needed help, and I didn't know how bad it was, so I didn't want to just, you know, let him yell for help and not respond to that. That wouldn't be terribly in alignment with my values as a gentle parent.

That's true. So we were, we were talking about, um, the emotional regulation, the social aspect, how none of that is actually true. Certainly the double empathy problem, I think you were referencing, right? Where we communicate as autistic people generally better in autistic groups.

Yeah. And yeah, um, by double empathy, is that the concept where we relate by telling a similar story and that's how we share empathy?

It's a, it's a principle that described a study that was done. I don't remember when, and I'm sure it's been duplicated a ton of times where it's a comp— it's, it's double— the double empathy problem was coined with a comprehension study where they put a group of people who are autistic together with autistic people, a group of people who are not autistic together with not autistic people.

Hmm.

And then a group of people who are autistic and not autistic mixed. And what they found is that in situations where it was the mix, comprehension went down significantly by like down to something like 40% or something. And the neurodivergent to neurodivergent, the neurotypical to neurotypical was like 70 to 80% of comprehension. So that illustrates—

Unbelievable. Yeah, right.

It illustrates what you were talking about, but I want to go a little deeper here and say, so if, if the problem isn't emotional regulation, if people see that as a problem, people see, you know, this understanding, grasping concepts, intelligence, if that's what people are pointing at as, okay, this is what's wrong, or this is the problem. What's the reality of this situation that isn't that? You know what I mean?

Yeah.

Like, what's really going— how would you describe what's really going on to somebody who's not autistic? To somebody, you know, all right, somebody who is autistic, somebody who's not.

So, um, I would definitely start by, um, I feel like a lot of these concepts need to be addressed individually because while they're all interrelated as misconcepts And, um, what they are is they're prejudices, and most of them are social and learned behaviors, things that we've been told or read in a book. Um, was just discussing one of the worst books I read ever in my life, Of Mice and Men, and, you know, required high school reading material traumatized me deeply and taught me Nothing good about the disabled community. Because the human body is only designed to withhold so much stress and pressure before all of that, like those signals from the brain to the nervous system building up through our body, before all of that tension needs somewhere to go. And because they're under so much ongoing stress and pressure, They're getting to that point of emotional dysregulation more often than somebody who isn't under this ongoing stress and pressure.

That's a great way to put it. So knowing that you've only got about 10 minutes left here, I want to leave the people who are watching and listening with something practical. So I like to ask this question: if you could instill into your child 2 lessons about the way the world works, what would they be?

Well, that's kind of a heavy question. Um, yeah, you know, I— on one hand, on one hand, I'd like to teach my child a lot of, you you know, like feel-good lessons. But the world isn't such a feel-good place. And unfortunately, you know, my lessons might be to look for people who are helpers, who people who see you and understand you so that you can feel safe in your environments. Um, and, and I'd want them to know that they could trust themselves.

What do they need to do that?

You know, it's funny because like the first thing that comes to my mind is A lot of trust and innocence, because like, this world is a really hard place. And when you're receiving a lot of prejudice in the world, it's, it's, it's really hard to trust yourself because you're constantly getting messages and then Yeah. confirmation bias that you're broken and something is wrong with you when that is not actually the case. And so you really do have to like look deep inside and ignore a lot of social messages in order to trust yourself and believe in yourself and to really see that you're not broken or not this, you know, in quotes, this the problem, you know, that, and, um, because you're not the problem. A product of an environment that is more— that is far less than welcoming. And, um, that takes a super emotional toll on people. And, um, you know, another thing that I would mention too about the emotional dysregulation, um, I talk a lot about that ongoing pressure, but the truth that also is behind this is— That— oh my gosh, I totally lost my train of thought and it was super important. I hate it when that happens.

Take a breath.

Oh, when people talk about autistic people and emotional dysregulation, they're not referencing the fact that autistic people are actively Being abused by society in a lot of different ways. And I don't know any autistic people who Don't report a considerer. And, you know, and how PTSD and autism can have like mirroring types of symptoms. Yeah. Give me 2 more minutes. I just want to ask for one quick question. So how these things can mirror each other, the PTSD and the autism, and the truth is that they're highly intertwined because I don't know any autistic people that don't have abuse and trauma and therefore also have PTSD to some degree. And so the emotional dysregulation ties into that a lot as Well, and when we address the trauma, as well as the environmental and some of the things that might be causing pain, and try not to add to the trauma load, we're, we're changing the life experience of an autistic person to be less harmful and traumatic and all these other things. other things that we have going on in our lives. And so, um, I would really want parents to address that as well. Like, take a— literally mainstream parenting and mainstream parenting concepts contribute to and add.

Yeah, it's really important. I like that, the idea of the autistic trauma experience. And I love this conversation despite the tech issues.

Um, yeah, it has been really difficult. It's been rough.

Yeah, this has been a rough ride.

We keep coming and going and tech issues.

Exactly. I'll have to stitch this back together, but that's okay. If people want to connect with you, how can they do that? Where can they do that?

Well, I share a lot of content just directly from my profile. It's Suyai Johnston, S-U-Y-A-I Johnston, J-O-H-N-S-T-O-N. And I do share a lot of content directly from there. Probably actually like the most kind of like engaging and connecting content there. From a learning perspective and, you know, from more of an educational perspective, you can find me in Gentle Parents Unite. There's a Gentle Parents Unite podcast. Gentle Parents Unite on Facebook has almost 100,000 members. And Gentle Parents Unite on school where I've recently moved my practice to. Um, and so really, if you just put Gentle Parents Unite into a Google search, you can find me. And you want to listen to some of the recordings that I've done more recently, um, yeah, pretty much anywhere. Just use that as a Google search and all kinds of really great stuff will come up.

Love it. Awesome, guys. So you heard that, Gentle Parents Unite. Um, Sujei, I realize I've been mispronouncing your name, so I apologize for that.

No, you know, it's a funny nuance. It's a story for a different day, but that's how it is right now.

So is there anything you want to leave—

You weren't actually mispronouncing.

Ah, okay. Is there anything you want to leave listeners or viewers with as we wrap up here? Any thoughts?

Um, well, I guess, you know, the same thing that I would want my children to know is that it's okay to trust yourselves and to believe in yourselves and to be yourself. And, you know, if you've got a little rock back and forth when you talk, own that and love it because it's part of you and you're beautiful. So.

Thank you so much.