The Sensational Struggle and Success of SPD Teenagers

When I was 14, a series of unfortunate sensory events that unfolded over the course of a single evening (new place, nighttime, summer, bright lights, surprise) lead me into a sensory meltdown-meets-shutdown the likes of which my person had never seen before. One second, I was smashed between racks of souvenir sweatshirts and Quebec snowglobes, and the next (I swear), a wooden marionette and a French Canadian puppeteer were chasing me out of the corner shop, rambling prolifically after me in their native tongue. I was terrified. I couldn't process sight, sound, or where my body was in space, but I didn't know how to describe it at the time. I felt stuck in this dark pit of undefined inability - I was suddenly unable to function in a typical way. I couldn't take in a single stitch of information from my surrounding environment. It took the arms and confidence of my entire family to escort me back to the hotel that night, drained from this frightening new occurrence. I guess this is a thing that can happen to me, I realized, but it's not clear what this "thing" is and how to defend against it. This realization set me up for nearly a decade and a half of rampant, untethered anxiety and doubt about who I was and what I was capable of accomplishing. My diagnosis of SPD was still 13 years in the future.

The author was psychologically-harmed in the finding of this horrific image 

*shudder*

Teenagehood was a time when I not only couldn't make sense of my differently-wired body and brain, I couldn't make sense of my body's basic hormonal and emotional changes. I mean really, adolescence is no fun for anyone. Did you have an amazing puberty? Cause god knows I didn't. It was enough contending with the random moods and cycles - who suddenly loved who and hated who and who couldn't be trusted with a Lip Smackers or a secret - let alone my seemingly strange need to fidget and bear-hug and eat only soft foods. I cried at everything.

At the time, I wasn't aware that adolescence was just adding fuel to my (unidentified) sensitive sensory fire. While the connection between SPD and hormonal changes has yet to be studied, I would think that the simple act of altering the internal workings of an SPD body would send anyone with interoceptive sensitivities into a tizzy. We feel the slightest lub-dub of a heartbeat - can you imagine a surge of hormones? If neurotypicals morph into greasy, cranky, delicate people thanks to the change in hormones - without any extra needs for which to compensate and regulate - imagine how a normally extra-sensitive, extra-intuitive, extra-aware SPD teen might react to this sudden internal shift.

It looks something like this:

Differently-wired braiiiiins

Or maybe this:

Kaboom

Or even this:

Hello, new friend

We all know that adolescence is a transition from childhood to adulthood - from smaller, more localized activities, goals, and family-lead responsibilities to more expansive, more life-changing, more independent engagements. It's a sensitive time for every teen as they attempt to identify who they are and how they fit into the world-at-large. It's no wonder, then, that parents mention what seems to be an initial surge - or even a resurgence - of SPD symptoms during their child's adolescent years. There are suddenly new parameters to consider and new environments to tackle. New is typically scary for someone with SPD who keeps their life regulated to compensate for any sensory dysregulation, so imagine suddenly being flung into unfamiliar life territory as hormonal forces take over inside.

Weeee

In my daily sensory travels, I've seen two major intertwined issues related to SPD in teenagehood:

1. Timing of diagnosis 

2. Ownership 

When a child is diagnosed with SPD earlier in life, parents or guardians shoulder the entire burden of awareness of differences and diagnosis. Think about it: three-year-old Danny is not going to say - hey, parent, I'm uncomfortable, and my behavior in this loud, bright, busy classroom is probably something we need to look into now. He's not going to assess his needs, contact local OTs, set up evaluations, and stick to a sensory diet. Little Danny is going to make vrooom vrooom sounds as he races his matchbox cars around the kitchen. In childhood, the onus is on the adults to take the diagnosis, make peace with the information, and make adjustments so that Little Danny grows up in an environment that makes him feel comfortable. 

(As an aside, in this way, SPD adults and parents of SPD kids have much in common. We each must come to terms with the meaning behind the sensory differences and diagnosis, and institute changes ourselves - both neurologically and psychologically - if we want things to get better. We're all responding to this new information through the lens of our life experiences so far. What does this mean for me? What does this mean for my kid? Because of this, we're both strong, natural centers of advocacy.)

In teenagehood, we're in a tricky, complex place when it comes to sounding the diagnosis siren. We're not yet self-sufficient, we're not yet primarily responsible for our well-being, and what we need has to pass through the parental filter and approval process before actually happening. So imagine finally having the right words to explain how we're actually feeling inside - something we couldn't muster in childhood when we didn't know any better - and not being sure if we should say anything because no one's ever noticed out-right before. Imagine knowing what works and what doesn't, what we need and what makes us recoil, but feeling uncertain - the way that hormones make the best of us uncertain - of what we're experiencing and especially of what should be done next. And then, go tell a truly caring, loving parent that there's something going on inside of you that cannot be seen in quite the same way as, say, a broken arm; something that the parent hasn't previously identified as crucial or invasively problematic. Go point out the habits you've learned to hide from your family for a decade and a half because they're just so unusual. 

It's a strange waltz: the typical self-conscious teen finally having the guts to come clean about behaviors they themselves don't even understand and the doting parent who undoubtedly recognizes the teen's sensitivities, but has yet to come to terms with these issues or decide if they're worthy of major concern. There are shades of embarrassment here on both parts, of shame - for the behaviors and the needs and for being "different" (teen) and for not acting on these issues sooner and the question of a child's "perfection" (parent). (My son is the apple of my eye, there's no way that he has neurological differences!) This takes the complex language of parent-teen-communications and spins it on it's head.

An anonymous 18-year-old with SPD wrote the following to her mother, and it's an excellent example of the parent-teen-relationship with regard to SPD in the teenage years. (Btw, thanks to Anonymous for sharing this with me - and with all of you - you are a truly amazing human being and I am so happy to know you!):

SPD is like having a bug on your skin. It might look like I just caught it, like it just landed on me, but it didn't. I'm just dealing with it on a bigger scale each year - the places I go, they get bigger and bigger. It's like if a bug jumps on your skin, you aren't just going to leave it there - you are going to flick it off. It's like that when someone touches me a certain way, I want to rub it off my skin. When I was little, a hug felt great because - well, I was small and the pressure on my body was just perfect, but now that I am bigger, it throws off everything, and when no one is looking, I have to rub my hands on my skin. You never knew that I rubbed off touches or covered my ears to keep out the sounds or rocked in my room privately because I knew you would yell at me for doing that kind for stuff, so I hid it. 

There is this feeling like I have to run into a wall. Remember when we had those two couches, one across from each other, all the way across the room, and I would run and smash my head into them like a bull? Same idea. As I got older, sports took care of that feeling - I felt grounded doing the tumbling class. It's the best I had felt in years and I was truly happy.

Remember when we went to that wedding and I "acted up"? I was so overwhelmed. The band was too loud and the people - well, I was afraid that they were going to touch me and make it feel like that bug was back on my skin. I retreated to the bathroom a couple of times because it was so bad. At that time, I wish someone did understand me. I wanted to be able to act mature and grown-up, but I couldn't. And you say I've been okay at birthday parties, but a wedding isn't a birthday party. Weddings are over my tolerance level. Concerts are over my tolerance level. Being at school, tolerating people, trying to look "normal" - ever since I was little - it's made me a people pleaser, hence trying to hide the rubbing and the covering and the rocking. To please you, I suppress things. But it's so tiring. You just burn out living like this.

In terms of ownership, a diagnosis of SPD in teenagehood is split between the teen and parent. Not entirely responsible for their ultimate well-being, but too aware to be completely disengaged, SPD teens don't always take the lead in their diagnosis and treatment. I've spoken to many parents who can't figure out a way to rouse their sensory teen into ownership and don't feel comfortable taking complete ownership of the diagnosis themselves. This means that for some teens, their sensory symptoms - heightened by the hormonal surge and internal sensitivities - fall quietly into an untended chasm. Unchecked, sensitivities get worse and even become engulfing. Questions are asked about how they'll survive a school club meeting, let alone college. 

This is who I was in my late teens - undiagnosed and unsure of myself and my differences. I'd like to say that I was ultimately successful (this post is, after all, The Sensational Struggle and SUCCESS of SPD Teenagers), and in some ways, I was. Still unaware of the root cause of my anxiety, I finished high school within the somewhat narrow parameters of my difficulties. (I did act in the high school's two-night production of Grease! which was one of the most amazing and terrifying sensory events of my life, but that's a story for another post.) I went to college and was on my own for the first time, and jumped from social situation to social situation, trying each to see what fit and felt comfortable. Instead of experimenting with substances (why bother when many days with SPD feel like a bad trip?), I experimented with my abilities - could I tolerate a concert? Sometimes, in smaller venues, if I was feeling well that day. Could I handle a big party? Maybe, if I stood with my friends in the corner, and left before I felt completely drained. I laughed and went for homemade ice cream, hosted movie nights and laid with my friends under budding trees, studying. I graduated a year early, eager to return to my more familiar, more contained life. 

Teenagehood is a temporary state of transition from childhood to adulthood. It is a strange time of change and movement into the unknown. We are suddenly more aware of our place in the world, and yet we are peering out at the larger world safely from the familiar confines of home and family. We can almost touch who we'll be and how we'll handle the future, but not quite. In an SPD teenagehood, I would argue that success lies in the survival - in the maintaining or even thriving in spite of the issues of hormonal flux, ownership, parental acceptance, and self-understanding. It's in the moving forward and the staying patient. It's in the willingness to believe that the hormonal haze will clear, the unfamiliar will be revealed, and in the transfer of the reins of personal responsibility from parents and guardians, a stronger sensory self will appear. 

The author in 2001 at age 18 before her high school graduation