advertisement
Home » Blogs » From Trauma to Mindfulness » Neurodiversity and Mental Health: An Interview on Living with Sensory Processing Disorder

Neurodiversity and Mental Health: An Interview on Living with Sensory Processing Disorder


I recently had the pleasure of being interviewed by Sound Strike Audio, a Michigan-based podcast, on what it’s like living with sensory processing disorder (SPD). We covered topics such as: what I really think about SPD, how it has affected my jobs and relationships, and how I’ve learned to keep myself regulated by following a sensory diet.

As part of Episode #3: Mental Health, Sara Secora was also interviewed on living with agoraphobia. The segment begins with Sara’s interview. Mine begins 10 minutes and 10 seconds into the podcast.

Click here to listen! (Scroll down and click on, “Get Konnected!” to begin.)

microphone
Image by Jorge Guillen from Pixabay

A full transcript for my interview can be found below:

Cussword [narrator]: Neurodivergent blogger, Jenna Grace, is spreading awareness for a disorder she and many others call SPD, or sensory processing disorder. Originally called sensory integration dysfunction, all five senses send jumbled information to the body when attempting to process, making situations uncomfortable for some and unbearable for others. But is it really a disorder? We sat down with Jenna Grace to find out.

Adam Buck: In your own words, can you describe what sensory processing disorder is?

Jenna Grace: So, um, pretty much anything affects any part of your nervous system, so information that is received, whether it’s sensory or a change [or] something that involves critical thinking, it affects your ability to think and to speak, and it is often triggered by the senses.

AB: Sensory processing disorder often gets diagnosed as a co-diagnosis with autism or ADHD, but it isn’t usually diagnosed on its own. In your experience and all your research and searching, why do you think that is?

JG: That’s a really good question because there’s a lot to that, and I want to make sure I address all parts of that. The first part is that, this is my opinion, but I don’t consider what I have a disorder. I consider myself to be a very sensitive person, I’m very intuitive, which means that I’m perceiving the world with a lot more intensity than the typical person may perceive it. This was an advantage in earlier times when maybe I would smell a fire or a storm coming and warn the tribe. Or maybe I’d feel the vibration of a stampede. So I was a seer or an oracle or however you may want to term it, in earlier times. Now, because of the absolute overload of sensory stimuli the second I walk out my door, all people see are the disadvantages. They see me having a meltdown, a panic attack, swerving on the road if there’s a cop light disorienting my thoughts or running for cover if I hear a firework because I wasn’t prepared to hear the firework so my fight-or-flight response went off.

And these are, you know, there’s a term, I’m not sure if you saw it when you were doing your research, and this is really what, I think, in the community of disorders, in my opinion, neurodiversity is sort of that tree, if you will, and then all of these disorders sort of hang off of it. Which is why I think, to answer one part of your question, it’s something that is often a co-diagnosis, but then also, in my opinion, from what I’ve learned about the autistic community, I think that because autistics are so perceptive and aware and sensitive, that they’re, again, often diagnosed with a disorder, as opposed to being understood that, you know, if they’re having a meltdown, or a perfect example, if a kid’s getting up while someone teaching and walking around, that child, whether autistic or sensory or whatever the label is, is just intuitively regulating his system. He knows he needs to get up and move around because he’s receiving too much information. Now if that teacher then reprimands the child and says, Sit back down, and embarrasses him or her and then not only that [but also] potentially punishes, now not only is the child instinctively doing what he needs to do, now he (he, she or they), are also being told that something they were naturally doing isn’t right, so they won’t do it again. And these things are, again, I think so many times diagnosed, and it is so painful for me, as someone who was put on medication for the majority of my life that did not work at all, it is so painful to watch these children be medicated. [The rest of my response to this was cut during editing.]

Cussword [narrator]: We proceeded to ask Jenna more about SPD and how it affected her personal relationships as well as her career.

AB: I just wanted to ask you a little bit about how having SPD affects your social life. You mentioned before that it’s caused you to lose jobs and to have struggles in relationships and such.

JG: I was fired from jobs for things like this [my previous examples were cut during editing] that would happen. Friendships didn’t work out. Relationships didn’t work out. I literally was fleeing from city to city thinking it just wasn’t the right fit when really it was this that was happening. It’s only been about three years that I’ve understood what was happening to me. It was tricky.

I’m very blessed that I have several friends that I’ve had since before [I knew what was happening to me] who see who I am as a human. They see my spirit. My soul. They know who I am. So these things were, you know, they’ve told me since, difficult for them, and it probably, I know for a fact, because people have told me, it made people not want to be around me as much. But it’s answered so many questions for so many people, so I’m lucky my friends and my family and my husband did not leave my side. I am beyond blessed because I know that doesn’t not happen for everybody.

Work was always, that was the biggest one. Because I moved so much, again, trying to figure out if it was the environment or whatever it was. [I come back to work in a minute.]

With roommates it was terrible because, you know, I remember in college people would blast their music and then I’d walk out screaming at them, and no one wants to live with somebody like that. Like I get it. So it was stuff like that that would be problematic. But college was pure hell because I remember being in a dorm and hearing and smelling and engaging in close proximity with people, it literally put me at my worst every day. Every day I was at my worst. And then what do you do in college, you drink and try drugs to try to stimulate and figure out stuff so I was just a[n] absolute hot mess. It was hell.

And then as you get older, like with anything, age brings wisdom and helps you figure stuff out and so, you know, I sort of naturally moved to environments that were better for me, but because most office jobs, or even teaching, were in very stimulating environments, I was having these reactions [meltdowns] at work, and who knows what people saw. I wasn’t even aware I was having these reactions. So I was always reprimanded for my facial expressions. I was always pulled aside and told that I needed to be engaging with my coworkers more. I was always told that I looked angry or pissed off or, I had a boss say to me once, Where’s the charismatic girl I hired, and just things that people weren’t — they were seeing this sullen-looking, depressed, angry person — obviously that’s not how I interviewed. So I can see where it would’ve been confusing. It was difficult that, even one time I was working at a non-profit and I was literally working with all women who were all certified therapists, and not one of them saw what was happening to me — actually, I’m sorry, one of them, only one of them, saw what was happening to me and understood that I wasn’t well. [With] the rest of them it was judgement. And it was telling me I didn’t fit in and getting upset with me for, like I had a woman waving a pen in my face one time, and to your proprioceptive sense, it’s threatening — to anybody [it’s threatening], but for me it was triggering. So I just sort of moved myself back because it was triggering for me, and instead of recognizing that and saying, Oh, I’m sorry, or whatever it may be, it was like, Why are you moving away; I’m trying to help you with something; why are you moving further away from me. And, it was like, I didn’t know how to explain it at the time, but it’s like, Your pen in my face is — I’m feeling threatened.

AB: It’s assaulting. Like that’s what it feels like.

JG: Exactly. So those types of situations always, I mean, I remember the facial expressions was a big one because, actually I got docked a raise one time because of my facial expressions. I had one boss at a job in Chicago chart how many times I got out of my chair and bring it to the meeting for me to be evaluated for a raise and show[ed] our supervisor that I got out of my seat too much, like we’re kids, but what I didn’t know what to say —

AB: Sounds like you’re back in school.

JG: Exactly. What I didn’t know to say at the time was, I was literally going to the bathroom to escape.

AB: It sounds so exhausting. You must be tired all the time.

JG: It was. And then you…go through adrenal fatigue. Because you’re pushing yourself and then I would get sick all the time. I mean I literally would end up in the hospital at least once every two years, and doctors did not know why, but I was fainting and, you know, breaking out in hives and had a high fever and it was literally my body like, Stopppp!

Cussword [narrator]: Much like Sara in our previous segment, cognitive routines and what Jenna describes as a sensory diet, help combat her everyday struggle with SPD.

JG: You know your auditory, olfactory, gustatory, those are relatively [easy to regulate]. You use essential oils, those types of things, smelling your food, but the ones that are a little more difficult, and the reason a sensory diet is, in my opinion, imperative for someone with sensory issues, is because something like your interoceptive sense, for example, which is your ability to sense what your body needs. So feeling hunger, feeling like you need to use the restroom, these are things that, especially with children with sensory processing issues, they either won’t know when they’re hungry, they’ll overeat or under-eat, they wet the bed much longer, they have problems using the bathroom at school, these are things where, if your interoceptive sense is not telling you you’re hungry, you don’t know then maybe you don’t eat, you don’t realize you don’t eat, you go out into the market and have a meltdown whatever it may be. So doing things for your interoceptive sense essentially means if you regulate all of these other systems, that sort of naturally happens if you’re following this diet.

For me, for example, if I’m sitting here working from home for six hours, [and] I don’t get up and walk around (Your vestibular, tactile and proprioceptive senses need movement, need pressure and release. Need yoga. There’s a reason yoga is so wonderful for therapeutic reasons. Getting your body to move in ways, engaging with your environment. Your proprioceptive sense is your sense of space, so your proximity to me right now where we’re sitting, my feeling against gravity, me feeling confident riding a bike, which I didn’t realize was part of this, all of those things.). So, if you’re not doing all of these things every hour, if I’m not eating carbs and protein every three hours, if I’m not getting up and moving, if I’m not smelling food or essential oils, and then I get up and go to the market, I’m gonna have a meltdown because everything is going to be difficult.

AB: All at once.

JG: In the mental health community, things are dismissed. It’s literally something you’re doing or you’re not doing and it’s just as simple as the environment that you’re in and engaging with that environment and at what level. And sensory processing is different for everybody and everybody sensory processes, right. It becomes a disorder, obviously, when things aren’t communicated to the extent it’s affecting your life. And I think for me, that wasn’t happening so much as a kid as it was an adolescent, and it was 20 years of hell. I’m not gonna lie, it was hell. I’m so fortunate. Part of the reason why I feel so blessed to have this kind of opportunity to speak to you and to write about it is because I know there are people who are suffering and if they by chance one day come across your podcast or my blog or [etc.], it saves your life. It literally does. So thanks again for doing this.

AB: Thank you for doing this.

Like me on Facebook | Follow me on Twitter | Visit my website

 

Neurodiversity and Mental Health: An Interview on Living with Sensory Processing Disorder


Jenna Grace

Jenna Grace is a writer and educator with post-traumatic stress disorder (PTSD), sensory processing disorder (SPD), premenstrual dysphoric disorder (PMDD), obsessive-compulsive disorder (OCD), social anxiety disorder (SAD) and generalized anxiety disorder (GAD) diagnoses. She writes and speaks about topics including healing from trauma, coping with neurological disorder and practicing mindfulness in order to help others and to explore new meaning. Visit her website for more of her stories.


No comments yet... View Comments / Leave a Comment

 

 

APA Reference
Grace, J. (2019). Neurodiversity and Mental Health: An Interview on Living with Sensory Processing Disorder. Psych Central. Retrieved on October 20, 2020, from https://blogs.psychcentral.com/neurodivergent/2019/09/neurodiversity-and-mental-health-an-interview-on-living-with-sensory-processing-disorder/

 

Last updated: 6 Sep 2019
Statement of review: Psych Central does not review the content that appears in our blog network (blogs.psychcentral.com) prior to publication. All opinions expressed herein are exclusively those of the author alone, and do not reflect the views of the editorial staff or management of Psych Central. Published on PsychCentral.com. All rights reserved.