SPD and Sexuality: An Interview
Can Sensory Processing Disorder (SPD) and sexuality impact one another? If so, how does this look, especially in terms of relationship?
In the following interview, we explored one young man’s experience as a self-identified gay man and person with SPD.
Woody is a 24-year-old recent college graduate who became aware of his SPD and his sexuality at young ages. Woody agreed to talk to us about what those discoveries were like and how they have, or have not, impacted one another throughout his life, especially in the development of his meaningful relationships.
Sensory Processing Disorder or SPD is a neurological disorder in which the sensory information that the individual perceives results in abnormal responses.
Sensory processing refers to the way the nervous system receives messages from the senses and turns them into responses. For those with Sensory Processing Disorder, sensory information goes into the brain but does not get organized into appropriate responses. Those with SPD perceive and/or respond to sensory information differently than most other people. Unlike people who have impaired sight or hearing, those with Sensory Processing Disorder do detect the sensory information; however, the sensory information gets “mixed up” in their brain and therefore the responses are inappropriate in the context in which they find themselves.
Jump to different parts of the conversation by clicking the links below...
Mim: How do you define your self-identity in terms of your sensory experiences?
Woody: As far as my SPD goes?
M: Do you say you have SPD?
W: I say I have SPD.
M: Believe it or not, there are other options
M: Some people prefer “sensory differences,” “sensory challenges.” They don’t use the term “disorder.” That doesn’t mean that’s wrong. It’s just however you identify.
W: I like to call it as the scientific consensus calls it because I’m a “sciency” person.
M: How do you self-identify your sexual identity?
W: Gay…. It’s pretty accurate.
M: What is your first memory around your sensory experience as being different from those around you? Do you have a memory like this?
W: Honestly a lot comes from stories that my parents have told. I have the great luxury of being someone who went through treatment at a very young age. I started treatment… I remember actually doing the initial testing.
M: How old do you think you were?
W: I must have been... I think it was around second grade.
M: So, like 7 or 8 years old?
W: Yeah. I remember my mom saying to me, “Hey after school, I’m gonna take you out a little bit early and we’re gonna go see this girl Andrea” -- who was my first OT. A different Andrea [from one currently working at STAR Institute], she lives in England now - lovely human being. I don’t know that I always… The thing that I always tell people, with Sensory Processing Disorder is that you can’t… it’s never really visible to you. Right? That’s just who you are.
M: Can you describe how you experienced SPD in your childhood?
W: I have plenty of memories of being really sensitive to loud noises. The one that I always tell, I told it in a video a while ago. We went to see “The Iron Giant.”
M: I remember that movie.
W: And we were a little bit late and when we got into the theater, the giant was crashing into earth and it was really loud and from what my dad says, I was on the floor with my hands over my ears because it was too much. Yeah... and once I got in, it was fine and then… this is a story that I haven’t told as much but I’ve always wanted to. I’m a huge Disney fan and theme park freak.
M: I know about your Disney love.
W: A little bit ironic. I don’t know if you’ve ever heard of “Dinosaur” the ride?
W: Yeah at Animal Kingdom. You’re going through and you’re driving past all of these dinosaurs. Cars are on hydraulics so they kinda do all this weird (moves around in seat)… But the audio on that, even the introductory audio where they do the “time travel commences in T-15 seconds” is unbelievably loud. And so, when I was a little kid, I would go on the ride and I would just have to sit there with my hands on my ears. It wasn’t necessarily that I was scared of the giant dinosaurs. It was just so loud that my fear reaction was fighting me on every turn.
M: It is incredible that your love of theme parks was so strong that you put yourself in those situations. You refused to let these strong reactions stop you from the overall experience.
W: I remember when YouTube first came out and people would post videos of the ride and I just got to the point where I would memorize the dialogue so that I knew exactly when to cover my ears. I could kinda hang in there for some of the lighter parts but there were just a few points where I had to (places hands over ears).
M: Wow. That’s intense. So, listening to what you’re saying, it sounds like you describe yourself as someone who has over-responsivity to sound.
W: To sound. I have cravings for compressions. I have a weight blanket. Honestly, it could be 200 pounds and it wouldn’t be heavy enough. This is probably the most subtle of them all but, weird textures and stuff on my hand. It’s just kind of (shakes hands)…
W: Yeah. And it’s never bad enough, thankfully, that I can’t tough it out but it’s like “I want this off of my body… now.”
M: So, I am hearing you describe over-responsivity to sound and touch and that you seek out body input or deep pressure.
M: So now I want to get into your memories of your SPD and how it impacted your childhood and even your adolescence. And it sounds like remarkably, through your resiliency and intrinsic motivation, you found work arounds.
W: I found work arounds. And it took the internet existing... and all sorts of stuff. And admittedly, I got a really great skill set from that initial treatment so that I knew... Andrea always used the Winnie the Pooh metaphor—Sometimes you’re Tigger and sometimes you’re Eeyore but you want to be Pooh. You want to be right in the middle. So, it... I had… and especially, just knowing what the issue was, made such a big difference for me. If it hadn’t been for my treatment at STAR Institute, we never would have known. And it would have just been “well he’s a scaredy cat.”
M: Outside of the Disney World anecdote, can you think of a time in high school or maybe middle school where that knowledge and understanding of yourself and your needs…
M: Ok. Tell me about that.
W: I have never played sports in my life.
M: Why is that?
W: I don’t know. I have always been more of an intellectual person rather than a physical person. Even though I’m this big lumbering guy... I’ve always... I’ve never had the coordination to do well in sports. And it always kind of… not only did I not really want to do it in the first place but I was kinda… it was kind of a demotivation, knowing that I had struggles with it. When I started playing basketball, I was awful. I had to play my freshman year of high school. I ended up on the team… because it was a requirement.
M: I was going to say, it doesn’t sound like an intrinsically motivating thing. But if it was a requirement, then you had to do something sports-related for the school?
W: I had to do something. I actually started out with a basketball conditioning course which was awful. It involved running ladders on the soccer field and, over time, it almost became a vendetta. Like “this is happening, dammit!” and there was weird coach drama… I was never like the star player but I did end up playing varsity senior year. We were really bad but I did play varsity and I was not the worst.
M: That’s huge!
W: Yeah. There was sports and there was video games. That was another one. My (younger) brother is absurdly good at video games. So, whenever we would play anything, I would get my ass kicked because when we would play just us, he would be better by default and when we would play online, it would always match towards (his skill level). And so, I had a long time where I just didn’t like video games even though I love and appreciate them so much as a medium. And it kind of took me going off to college and playing some games on my own to be like “you know what, I can do this.”
M: Because, for your age group, “gaming” is a real common occupation. It’s a social avenue and a leisure avenue.
W: And I love anything computer related and it was really hard early on. What video games taught me more than anything was the value of persistence. Like with Disney, when I watched the (ride) videos for fun and not even consciously realizing that “hey, this is preparing me for something.”
M: It seems that we return again and again to these examples of strength and resiliency.
W: Intrinsic motivation.
M: Yes, (laughs). It’s more than that, though. People can be intrinsically motivated but you, you have a lot of strength. The fact that you persist is a major part of you.
W: One thing I have learned in this world is “get knocked down seven times, get up eight.” It isn’t about who gets it done first, it’s about getting it done.
M: Do you feel that has to do with your experience with SPD?
W: Yeah. You know that they use that horse (bolster swing) that is suspended from the ceiling (in the clinic)?
W: I always say, never has the saying “get back on the horse” meant so much. I remember trying and trying and falling and falling.
M: All of these stories have this common thread of how you were thrown more obstacles than maybe your peer group was and yet you still, because of intrinsic desire or personal vendetta, pushed through what would be debilitating for a lot of people.
W: And it’s not that I didn’t give up—because I did several times. But you have to ask for help. I had a friend who would play with me and he was so good at these particular video games and he would tell me, “every time you die, figure out what happened and don’t do it again.” Whereas, in the past especially with my brother, it felt like… I mean, we were playing first person shooters which are twitch reactions and if you don’t know what’s going on instantaneously, you’re dead before you can change anything. It became this different sort of learning process. I actually ended up beating the second to last boss on my first try.
M: That also speaks to one of your other strengths. You have a lot of cognitive abilities. A lot of people with SPD have to use their cognition to override their coordination issues, or problem solving or they even try to override that “ahh” feeling (mimics Woody’s hand shake from earlier).
W: The way that I would describe it is when something was going wrong, my brain had a plan and it was going to do that plan no matter what. Even if that plan was no longer viable. And it was learning to kind of recognize the situation and not just keep doing the same thing over and over again.
M: You made mention of a friend. I want to start bringing relationships into this discussion. Do you feel that your SPD affected your relationships? How you made relationships? Who you made relationships with? What kind of relationships you had?
W: I tend to be very “huggy.” I tend to be a very physical person. So that can be kind of off-putting to people if they don’t understand where its coming from. Some people are ok with it. One person came up to me and she was like “hey it’s so good to see you” (and hugged me) and I was thinking “oh I’m sick I shouldn’t be doing this” but I almost did it by default and ended up hover hugging (mimes hugging without strong contact).
M: Do you feel like when you were a kid that you were drawn to more physical kids, then? Or quieter kids since you were sensitive to sound?
W: I was always drawn to kids… like my friend Morgan and I would sit at the picnic table on the corner of the playground and we would pretend it was like a giant super computer. I was drawn to… the more imaginative side of things.
M: You were drawn to kids that could keep up with you in terms of imagination and maybe weren’t making motor demands?
W: I was a talker… I wasn’t a mover.
M: You wanted the kid that could play super computer but not the kid that said, “hey let’s go kick a ball around and play some soccer.”
W: Exactly… Soccer was… a disaster (laughs). I tried soccer once and… I do not remember it this way. I remember calmly walking up to my parents and saying “I don’t want to do this anymore.” But apparently, I ran over (to them) screaming.
M: I want to talk about when you became aware of your own sexuality. Was that something... from your memory, when did that start occurring for you?
W: The first memory… I was always… I don’t want to say flamboyant but I… I will commit to anything 100%. There’s this video of my brother and me dressed as the Cat in the Hat and I was like “I’m the Cat in the Hat! Who’re you?” And Lucas was like “I’m... Lucas.” And I was like “WELL I’M THE CAT IN THE HAT!”
M: So, you had a flare for dramatic?
W: That is a good way of putting it. The first memory of the word “gay” popping into my head was when we were sitting at Chili’s and some girl… this was like in fifth grade… allegedly started a rumor that I was gay. Initially I brushed it off like “No, no of course not.” But in my head, I was like “Oh god. She’s right.” It took... I didn’t come out until I was two weeks into college. It eventually got to the point where it was like “I can’t keep this a secret anymore. I just don’t know how to deal with it.” I… I hadn’t… I wasn’t the typical gay kid. Some of this relates to my SPD. I dress like this (gestures to his t-shirt and sweat pants) on most occasions. I wear sweat pants and T-shirts and jeans. Because that’s what’s comfortable. I don’t… I’ve always been the kind of person... it’s not what you look like. It’s not how you dress. It’s not necessarily the first impression, it’s what can you bring to the table. And that’s always the way that I’ve thought. Sometimes I wish the world thought a little more like that. So, I didn’t have these really typical markers. And I wasn’t... I wasn’t into fashion. I was a writer. Because of my fine motor skills, I was never an artist. And acting was fun but… but I think almost as a defense mechanism I almost strayed away from it. Which… I don’t regret anything but it’s still… yeah whatever. You were just kinda doing what you wanted to do instead of what you felt like you had to do.
M: You’re talking about when you went to college and where you put your focus?
W: Not college. This was in middle and high school. That was a really weird time because I had these conflicting signals. I’m a nerd. I like video game and computers... and I didn’t explicitly like boys but there were some times (hind sight being 20/20) where you’re like “yeah, no you didn’t just think they were great athletes…” But I was just... I just had these conflicting signals. And anytime that you’re different, it isn’t necessarily a strike against you but it is something that you have to overcome if you want to be a happy person. You have to be okay with the fact… with your differences.
M: You have to accept yourself.
W: And I was... I was never like the other boys. Never. And especially when I got to high school, that started to hurt a little bit. Because… I went… I went to a very small school. My graduating class was 76 kids. So I found myself trying to fit into this mold of… being somebody... trying to fit the mold of the typical...
M: In the group.
W: Yeah. Fit into the group. I… it took so much… I wanted to not be the different one and it inevitably back fired and I was the… I was kinda the... I’m prone to these awkward social situations where I kind of… cross the line. And also, I have really bad anxiety and really, really bad social anxiety. I also have a fantastic memory so I remember every little weird mistake so it’s like… “OK. So, everyone hates me.” That’s the mental image that I’ve got right now. And… I can’t be mad about it because… did it suck at the time? Yes. But everyone has times in their lives where things aren’t perfect. It wasn’t like I was miserable. While I didn’t get along with the kids as much, I got along with the teachers and professors. Like I would stay after class. Ms. Myers, she taught physiology, and we would just talk about music and all sorts of things.
M: You found that was a better match.
W: Yeah. And that’s something that extends to me now. Like my partner is 27 years older than I am. He’s like retired army... and we’ve been together for four years now. And most of my friends... tend to be older. They tend to be more the 40’s-50’s side rather than the 20’s-30’s side. I haven’t always identified with kids like that. And I have a few exceptional friends that are my age now.
M: That’s who you gravitated towards.
W: That’s who I gravitated towards. And I don’t know… maybe because I’m a little more emotionally mature than kids my age. Maybe because I’ve been… I’ve had a set of experiences where I don’t necessarily get along with kids my age. Because, kids my age tend to have significantly different interests than me. They’re catching up a little bit now since I’m in my mid-20’s.
M: I think it’s very interesting, you talked about what you wear. I think you used the term “markers” around, at least what your perceptions of, what a gay man would dress as or be into. You didn’t feel that you were meeting that perception, and maybe that was part of the confusion?
W: Yeah. And it like… didn’t happen until right around 2012 where... for example… I don’t know if you ever saw the show “Happy Endings.” Well there was a character. A gay character that did not present as “typically gay.” It wasn’t, it didn’t have that sort of...
W: Yeah parody aspect of it. Like when I was a kid, I grew up watching Family Guy and American Dad and those are just… not great shows for that kind of …
M: Yes. Those are inflammatory shows for a lot of things.
W: This might actually be a relevant experience to this. I… the way that my coming out happened… I was watching “It Gets Better” videos on YouTube and I came to the Google one because Google did one. And there was one guy in there who, he… he was wearing like a college T shirt and... he didn’t present in the typical…
M: He looked straight?
W: I don’t want to say that he looked straight because I don’t like that terminology but… it was different from the perception that I had. Umm... and I actually wrote a little comment saying “I wish I could thank this guy.” Right after that, I put my parents on a conference call and told them I was gay.
M: So in that video... it turns out that he’s gay?
W: Yeah. Everybody in that series was LGBT. The fun part about this story is that I checked my messages on YouTube and he had actually written me back.
M: Wow! What did he say?
W: He was just like, “I was scrolling through the comments.” It’s usually just a bunch of inflammatory crap because YouTube comments are awful. And he saw my comment and said “I’ll send you a T-shirt or whatever. I’m so glad that I could help you out.” He actually sent me... they had these little android guys and they were holding hands and one of them was holding a little pride flag up. I cannot find the shirt. I think it got lost in one of my moves but it was… that was such an impactful experience for me. It was one of those few moments… ‘cause I’ve always been on the internet. The internet is where I grew up. I spent all my time on forums, websites. When social media first began, I was one of the first people to jump on that.
M: For you, do you think there are any tie-ins between SPD and who you are now? Not just your sexual identity, but all aspects of you.
W: The way that I’ve always thought about it is that SPD has always been a part of me whether I have been conscious of it or not. And in the myriad of little decisions that each of us make every day… looking back, I can see how the SPD has affected some of those decisions and affected the way that I have kind of put myself out in the world and how I live.
M: Can we discuss that a little bit about that? About how you put yourself out in the world? Like I’m thinking of… I don’t know about how you maybe met your partner or previous partners or anything like that. My guess is that as someone with SOR, you’re not going to go to bars or loud places. Like that might not necessarily be your scene.
W: Oh god. Yeah. I’ve been mistaken for straight at gay bars. I don’t know how… well I know how I do it. I just kind of stand in the corner shaking.
M: Because of the sound?
W: The sound and the social anxiety. Sound has been become one of those things… It’s almost like… you know the saying that “a frog won’t hop out of a pot if you raise the temperature slowly.”
M: Yeah, you can acclimate.
W: I actually acclimate to sounds very well. And if it’s a song that I know and I know when it’s going to start and what’s coming, I love it. I used to love… in junior and senior year, I was really into electronic music and I went to a lot of Red Rock concerts. Admittedly, it was a lot to process but it was also… it was an experience… I was fascinated by the light shows and how much work goes into them because they were big and elaborate. I’ve always been a very sensory person at least in some regards. I love experiencing things. I love… whether it’s going on YouTube, going to Disneyworld, or concerts, I love new information. I love pushing my own limits because if you don’t, you’re gonna be stuck in the same place for the rest of your life. Nobody wants that. I want to grow and expand as a person. There are still limits that my SPD poses and I know that I will never be a professional athlete, but I don’t want to be running scared. It’s almost embracing… I don’t want to say pain… but discomfort or challenge. Just being able to learn and expand and push my boundaries. I think that’s something that having SPD, and going through the treatment model, instilled in me. The desire to push things and conquer my fears.
M: That you were safe to do that.
W: Safe to do that, yeah. The one fear I will never conquer is my fear of taxidermy.
M: That’s normal! (laughs) Has the SPD impacted your living with a partner versus living with a parent?
W: I think a little bit easier. Like he is… Mike is very like… he was in the Army for 20 years. He fills an entire closet with his own clothes. He’s very much my opposite in a lot of ways so it can be frustrating when… I do things… like it took me forever to kind of calm down and say, “you know what? I can dress nice once in a while. It’s not going to kill me.”
M: That’s one of those challenge areas?
W: Yeah. It’s the restriction of the clothes. It just drives me crazy. So it’s learning how… I’ve had to learn where sensory issues cause challenges with my partner and address them a little bit. I’ve had to do that with my anxiety. I’ve had to do that with… just being a 24-year-old dating at 51-year-old. There are inherent challenges to being with another person and my challenges are sometimes different from what other people face.
M: I like what you’re saying: Has my SPD created challenges in my relationship? Yes. Everybody has challenges in relationships. Some of my challenges happen to be around my SPD but not all of them.
W: I’m sure that if we talked for another hour, I could come up with another dozen examples. Again, it’s so entrenched in your brain... it’s not always apparent what’s causing the issue.
M: Like what you said, “I don’t have a conscious memory of these. They’ve always been a part of me.” There are times where you aren’t going to be able to see it.
W: I think we mentioned this the last time we talked. Whenever I get overwhelmed, I turn into a bit of an asshole. I just… I become antagonistic. It’s just my sensory…
M: It’s overload.
W: And what I’ve kind of had to learn to do is recognize the moments and sequester myself because I don’t want to say anything to hurt anybody and I know that I will and I won’t really mean it.
M: No because, you’re having a physiological response and its coming out in a behavior… it’s being prompted from this over-arousal…
W: It’s like electricity… I can physically feel it.
M: Now that you know that, you can identify it.
W: I struggled with that for a long time because I was like “I can say some really horrible things.” And it never occurred to me that SPD could be a factor for that.
M: Isn’t that incredible? Thanks so much for taking the time to talk with me and sharing such personal parts of your life with us.
If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.
Mim Ochsenbein, MSW, OTR/L has been a practicing pediatric occupational therapist for over 20 years. She has received advanced training in sensory processing (STAR Institute Intensive Mentorships, SIPT certification), listening therapy (Therapeutic Listening), feeding therapy (SOS) and infant massage (CIMI). Mim received her MSW in 2012. Her work with children and youth has occurred in a variety of settings including early intervention, school based, clinic based, mental health and private practice. In her role as STAR Insitute’s Director of Education, Mim creates and teaches STAR Institute trainings, oversees SPD University, and provides educational programming and resources for clients and families.