Living a Sensory-Informed Life – Chasing Life with Dr. Sanjay Gupta

I t was spring 2017. Terry Lashley took his wife and their three daughters out to a local music festival in Atlanta. Their baby daughter, Skye, was just a newborn at the time. The festival grounds were packed and Terry was pushing baby Skye in a stroller through the crowd when things started going wrong.

As we got closer to the center of the festival where the sound was the highest, Skye just totally went- you know, like you would think someone was, like, really harming her in the moment. She was screaming, yelling, and we was just having a panic attack. Like, what’s going on with our baby? What happened?

Freaking out. Terry carried Skye in his arms and left the festival. She calmed down after that, but he was left shaken by the incident.

That was the beginning of us recognizing like, wait a minute. Something’s different about our baby, you know, in regards to her senses and and how she interacts with her environment.

We rely on our senses for everything. There’s such an essential part of life that most of us probably just take them for granted. But sometimes, one or more of our senses can go awry. Maybe we feel too much like Terry’s baby, or not enough. Maybe we feel a sensation, but we don’t know how to interpret it. In this episode, we’ll take a look at sensory processing disorder, how it can disrupt our lives, and what we can all do to support people who have different sensory experiences. I’m Dr. Sanjay Gupta, CNN’s chief medical correspondent. And it’s time to start chasing life.

Sensory integration and processing… At the most simple level, it is how we make sense of what we sense.

That’s Virginia Spielman. She’s executive director of the Star Institute. It’s a leading education research and treatment center for people with sensory processing integration issues.

In the same way that, you know, you have a respiratory system, you have sensory systems. They register sensory events in the world and in your body. Those signals, you know, that are picked up by the hard wire of your vestibular system or your eyes or your proper receptors, your tactile receptors. These sensory signals that are registered, they travel up to the higher regions of the brain where they’re interpreted, prioritized, and then from this just massive variety of sensory data, your brain and body put together your big picture of the world. You know, it’s like puzzle pieces.

Let me try and break that down for you beyond the five traditional senses. We do have a few more that are essential to how we function. For example, our vestibular system that helps us balance and stay upright whenever we sit or stand. Our proprioception sense that tells us where our body is in space. It’s how you can touch your nose without looking or turn on the light in the dark. And our interoception sense, which tells us what’s happening inside our bodies. It’s how we know when we’re hungry or we’re tired. Now, each of these senses is tuned differently, and they interact differently in each person. As an occupational therapist, Virginia works with children to figure out what they’re struggling with and how they can learn to manage and thrive.

So what an occupational therapist does is they come in. We’re trained in how to make those skilled observations. But we also try to use a standardized assessment because then we get some data. And so what that means is we do tests that are slightly unusual body movements. We ask the child to have one foot in front of the other in a straight line, and we ask them to just stand with their eyes closed and see how long they can maintain that position for. And our children who have significant differences in sensory integration, can’t maintain that position. They tend to fall out of it very, very quickly.

So when you do something like that, one foot in front of the other and close your eyes. So the idea of your your balance, but I guess also your what we call proprioception, your idea of understanding your body position in space, your vestibular, your inner ear, as you mentioned, they’re all being sort of tested in a way, it sounds like, if you do something like that.

Yeah. And by asking them to close their eyes, we’re taking away the visual anchor that they might have used so that we can hone in on those other movement sensing systems.

Was there a point where you were in your career and you said, okay, this this is a thing. This is what I want to do?

Yeah. As I studied my undergraduate degree in occupational therapy at Oxford Brookes University, I started learning about this thing called sensory integration and processing, ended up doing my dissertation on it and really fascinated by this idea that we experience the world in such different ways. How strange it is that it’s so poorly understood, especially our movement senses, and the absolute sensuality of it to health and wellness and flourishing.

That’s the part that I find so fascinating, this idea of the sensory integration. We’re sensing the world, and it’s a series of neurochemicals, sound or sight or touch, you know, whatever it might be. But then the idea that it’s integrated into a pretty unique experience, I mean, sense-sensory integration then is the experience of all the sensory processes coming together, right? And we know it. For example, if there’s not good integration, for example, I get carsick if I’m trying to read in the car and the idea that my my visual system and my vestibular system are not tracking.

I feel that so deeply.

Right. I mean, that’s that’s a maybe a common example of when we’re not integrating those senses well. And we do this intuitively, right. We don’t think about the fact that we’re integrating these senses, but we do that. Is that accurate? And is that the way that it’s supposed to be?

I would say it toggles between conscious and unconscious effort, for most of us it’s below consciousness most of the time. But you and I have probably both experienced the long conference and the after lunch lull and the effort you have to then put into orienting to the speaker and not being distracted, not letting your arousal get too low. So sometimes I would say that that was conscious efforts. And that’s a really important point because for children who have differences in sensory integration and processing, that conscious effort piece doesn’t get to go away. It’s like constantly running in the background, taking up space, taking up energy and efforts and cognitive real estate, pulling that away from learning and other things that we need to do.

When you think about our sensory systems not working within the bell curve, if you will, I’m hesitant to say that they’re not working the way that they’re supposed to, because I still feel like that’s a bit of an open question. I mean, you know, it makes total sense to me that with 8 billion people roughly on the planet, the idea that we all process things the same way- that doesn’t make sense. We must all process things differently and-and, you know, the idea that I could even begin to understand exactly the way someone else is absorbing the world, if you will, sensing the world, is probably a fool’s errand. But is it typically a situation where someone is too sensitive towards externals? They’re sensing too much or too little? Or I guess what is typical in terms of being atypical here?

Yeah. I mean, do we really get to say what normal sensory processing is? And, you know, we wouldn’t have Olympic athletes if we did. If we wanted everyone to process things within that very limited part of the bell curve, we wouldn’t have our exquisite dancers and artists. You know, their sensory processing and integration differences really supports how they excel in their fields. And then there are others for whom it really does feel like a disorder their differences, sometimes that’s because the world isn’t very flexible. The way our public spaces are built are about farming people through as fast as possible and not about comfort. And so flickering lights and and all those sorts of pieces create challenges. And so that mismatch between this person’s sensory processing and integration capabilities and the way the world is built and our systems are built, can create that disorder. And then there’s other people for whom it really just feels like it’s a disability, it’s mostly rooted in my body. The most commonly recognized way this presents is, as you said, over responsivity or sensitivity, where things feel too intense, too much, and it can feel like being bombarded all the time by sensory stimuli. And so that pushes your body into a state of self-protection and self defense. At a nervous system level, you become hyper vigilant as your baseline, which is pretty exhausting, and can result in you appearing perhaps aggressive or irritable or, you know, having less stamina than other people throughout the day, needing more breaks.

The fact is sometimes people are overly sensitive, sometimes they are under sensitive. In other times it can be hard to tell what’s really wrong. For example, Virginia works with a young girl named Laura who’s always getting into trouble at school.

She’s seen as a sort of clown. She’s seen as impulsive. When the teacher’s asking her to do something, she tends to start before the instructions have even stopped. She always seems surprised, though, when she’s sent to the principal’s office and-and she said something very worrying the other day to the principal. She said, Maybe, maybe I’m just a bad girl.

It was only after the school then brought in an occupational therapist that they figured out what was really happening here.

And they start noticing that she can’t really plan something in advance. She doesn’t hold a sequence of events in her head, and so one of the reasons she looks impulsive is because she’s so eager to please that she wants to get on with it straight away because she knows by the time the third step’s been explained, she will have lost the first step. And so for her, generating an idea, creating that idea, planning it and executing it with her body, and being able to tell whether she’s successful or not, they’re all challenges that she faces, body based challenges that present as disruptive, obnoxious clowning behaviors to the external onlooker.

They can get to the point where it can be disruptive to one’s life, right? And I’m using my own example of my life, but my youngest daughter had an issue with the clothing that she was wearing when she went to school, and it was actually fascinating to me because it was the seams specifically of the clothing. And if she was wearing tights or something like that or even socks that had seams, it would really bother her. And it was a it was a issue because we were always late. I mean, she could not be on time for school. I mean, what should have taken a few minutes would took over an hour every morning. And it was lots of, you know, spending time hand-holding, trying to turn clothes inside out, you know. So it was all these things. And in retrospect, now, you know, it maybe it doesn’t seem like as big a deal, but it does seem like sensory processing disorder can be quite debilitating for some people, right?

It can. And, you know, we want it to be at the table at the first problem solving appointment with the pediatrician where you’re going: “I don’t know what’s up here.” right? And that it might be just really sort of mainstream common sense that someone even would send you with the baby shower socks without seems, you know, because it’s a possibility. Right. Because sometimes we get so lost in in behavioral approaches to supporting our children and getting them out the door faster that no one just says: perhaps we could provide an accommodation, and everyone will be happy and your child will feel comfortable in their body. And it’s so simple and it’s so complicated.

How prevalent is this? What we’re talking about here.

So when we’re talking about in these 8 billion people around the world, some of the research says 16% of the population. So when you’re talking about the autistic population, you’re really talking about 90% of people. And then when you start looking at under responsivity and dyspraxia differences and postural differences because of discrimination, you know, the number just goes up. So one of the reasons we talk about sensory health is like because everyone benefits from understanding this.

I think there’s this tendency and again, I will tell you, I’m guilty of this as well, but power through it, right? You’ll get through this. You’ll get over it. It’s something that you’ll outgrow. I’m glad that we spent the time with my youngest daughter actually figuring out what seemed to be at least part of the thing that she was experiencing, how she was sensing. But at what point do you think that something goes from being sensory processing differences to being a true disorder?

Yeah. It’s not really a checklist. And what we really want to do is look at quality of life. When my body doesn’t feel safe in the world, then there’s a disorder. There’s a disability that may be could be mitigated through primarily environmental accommodations, but also therapeutic supports are going to help, you know, the way that these things can impact relationships and behavior, it’s so deeply baked into every part of life. You know, it’s like being stuck in that dark car park and you’re separated from your friends. You’re-you’re in the underground parking lot. And what happens is you get more and more vigilant in your body, don’t you? You orient to every sensory system in the environment. There’s a dripping pipe over there and there’s a flickering light over there, and you noticed all of it. And what we call your arousal or your state of defensiveness goes up and up and up and and then you hear footsteps. You know, we’ve all had that experience. And some of our children, for whom these things are uncomfortable or disorganizing, and that’s their baseline, that’s their every day. So we have to as early as possible, let’s change the way we’re approaching this child so they can feel that sense of mastery and organization. So really, it’s about your ability to participate in those things that give you life. It’s about your self-determination and self-actualization. And if if that mismatch between your sensory systems and the world is a barrier to your self-actualization, to your ability to function and participate, then you need help and you deserve help.

So I bet you’re wondering, like I was, what can we do when our sensory systems seem to be struggling? We have some answers coming up after the break. And now back to Chasing Life after that festival back in 2017. Terry Lashley started searching for an explanation as to what was going on with his youngest daughter, Sky. Pretty quickly, the dots started to line up.

Sky, to this day, doesn’t wear jeans because she doesn’t like the feeling of the jeans on her skin. And when I say she likes things, it’s not a preference. It’s a necessity. If this material that’s touching her skin doesn’t feel well, she can’t function.

Eventually he took Skye to the doctor.

And, you know, he was like, This is definitely SPD. This is not normal. Her sensory reactions, the responses or receptions are significantly above normal. So that’s when we knew, like, yeah, this is a thing.

Now SPD or sensory processing disorder is not an officially recognized diagnosis, but for many people, having a diagnosis validates their experience. For example, with Terry, it really did help inform how he approached parenting Skye.

The worst thing you want to do for a parent is to react to something that your child is doing and essentially hurt your child’s feelings or reprimand them for doing something that as a result of how they were born, like, that’s the worst thing for me, you know?

And it’s also helped him get more support and more resources for his daughter.

Diagnosis leads to proper treatment. Diagnosis avails you to whatever therapies or medications if necessary. And it also makes your doctor aware so that, you know, as your child progresses in life and has to hit these certain milestones, your doctor can better help you.

Since then, Terry and his family have created a system to make sure Skye is always comfortable in her own body and the environment.

We have earmuffs for her that we take everywhere that we go, and we provide those to her upon request only.

And over time, Skye has made progress on managing her sensitivity to loud sounds. She’s even ventured out to concerts. Recently, Terri took Skye to a michael Jackson tribute show in Las Vegas.

You know, it went from I’m a little tense right now is a lot going on, to, maybe I’m going to put my fingers in my ears these are like levels, these are levels. And then fingers get close to the ears, and we’re observing her, I’m like on her like a hawk. When her fingers go to the ears for a prolonged time, then I hand to her headphones. If she doesn’t do it and she backs down, then I leave her alone.

Most importantly, Terry says he listens to Skye.

She can determine if she’s comfortable. She can determine if she can push through this. So I let her do it. And I think over time, that has allowed her to either adjust or desensitize.

It makes me really hopeful to hear Skye’s story. You know, we all experience the world differently. On top of that, our own sensory system has certain needs and certain triggers. Sometimes our sensitivities can disrupt our ability to function and live our lives. That is true. Sometimes it can be more of an annoyance, like when we get hangry and we snap at our friends. If you are struggling, I want you to know that you’re not alone and that there is help available. Sky’s experience shows us that what’s most important is being self-aware, realizing when something is wrong, and then figuring out why and how to respond to it. So how do we go about building a more sensory informed life? Let’s call it that: a sensory informed life. Well, tip number one is from occupational therapist Virginia Spielman. Pay attention to how you’re feeling and what the triggers might be for you.

You start to notice that when you’re stuck in traffic and maybe the aircon in your car is blowing on your face. I know that if I move it down to my feet, I’m going to get less irritated in this traffic jam, and you start making little, tiny, compassionate accommodations for yourself. And I believe they’ll also help us be kinder to other people.

Tip number two: figure out what works for you.

Really look at the things you do that nourish your body. Like, do you need to go to the gym to be a decent human being? That tells you something about movement and probably your proprioceptive system. Do you need to be out in nature? You know, can you be more deliberate with the lighting in your office? What helps your body feel good? What pushes your body into other zones?

Tip number three: notice how your feelings affect how you treat those around you.

When I am over responsive to sound and my children are noisemakers, they love to make a good deal of noise. But knowing that about myself has been so important because I can notice that my body is starting to get me into that place of dysregulation and irritability. And so I can say, like, I’m going to need a break before I start to get grumpy with the noise and also my children now are, not always, but sometimes are able to say, you know what, I’m going to go make noise elsewhere. Actually, I’ll put my headphones on, mom, I won’t make you listen to Jason Derulo again. You know, those sorts of different things.

Tip number four from Terry Lashley, be kind and accept the differences of others.

It’s okay that my daughter doesn’t wear jeans. So what? You know, it’s. It’s okay that she’s sensitive to light. That’s okay. Like, I know that we could all find something within ourselves that we want people to be aware of and to be okay with. And if that is the case, then we should then approach that with everyone else.

Tip number five: be patient with the journey, and don’t be afraid to ask for help.

Make necessary adjustments at home and seek medical professional help, whether it’s through your therapist or your primary care provider. Just be open. This is what I’m experiencing and allow that professional to to help you navigate wherever it is you need to go. You don’t need to know the end result right now. You just need to identify and reach the next step.

For more resources and information, you can go to the Star Institute website at Sensory Health. Org. You can find checklists of symptoms, lifestyle adjustments you can do at home, as well as links to occupational therapists and a whole lot more. You can also follow Terry Lashley at Terry T E R R Y dot Lashley L A S H L E Y on TikTok or Instagram, where he and his wife are now sharing stories about parenting and being a neurodivergent family. Oftentimes we are so caught up in things, caught up in trying to just get through our to do list to survive the day that we forget to pay attention to how we are feeling and what our sensory systems are telling us. We need to listen more. If there’s one thing I hope we all take away from today’s podcast, it’s that we can never know how someone else is experiencing the world. And sometimes we’re not very transparent about how we ourselves are experiencing the world. That’s okay. But even to be aware of that is really important because then we can be kinder, we can be more compassionate to each other and to ourselves as we all try to make our way through the world. I am curious to hear what you think of today’s episode. Have you ever thought about your own sensory needs? What are some of the adjustments you’ll make to accommodate those needs? Let us know. Record your thoughts as a voice memo and email them to ask Sanjay at CNN.com or give us a call, 4703960832 leave a message. We might even include them on an upcoming episode of the podcast. We’re going to be back next Tuesday with a really important episode. It’s about the potential of psychedelics, specifically in therapy for mental health conditions. What is hopeful? What is hype? What is harm? We’re going to deal with all of it. Thanks as always for listening. Chasing Life is a production of CNN Audio. Our podcast is produced by Emily Liu, Grace Walker, Xavier Lopez, Erin Mathewson and Andrea Kane. Our intern is Amber Alesawy. Haley Thomas is our senior producer and Abbie Fentress Swanson is our executive producer. Tommy Bazarian is our engineer. And a special thanks to Ben Tinker, Amanda Sealey and Nadia Kounang of CNN Health.