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Wednesday, April 29, 2015

Sensory Issues: Differences, Disorder, or Disability?

This post will probably not make me popular or win me any admirers, and that's OK. I'm learning that sometimes it's the job of an advocate to rally the troops and infuse the world with endless motivation and positivity, and sometimes my role is to force people to take sides, or at least consider different angles of an issue through my writing. 

Let's talk about the three big Ds that people use when describing their sensory processing issues:

Differences
Disorder
Disability


Picture a scenario: I'm sitting with a group of friends at the table of a busy restaurant one evening. It's clear that I'm somewhat distracted already - the waiter and busboys are perpetually flanking us on all sides, all too quick to snatch our plates away or refill our glasses. At the table next to us, a set of parents try to corral their toddlers as they scream, drop sticky bowls of sherbet, and leap from their seats to explore. The lights, bright and intrusive, glow overhead. And then, without any prior notice, a live musical act begins setting up in the corner and testing their instruments. This simple act puts me over my tolerance threshold, and suddenly I am in shutdown mode, dissociated and uncomfortable, swathed in the physical reaction to too much sensory stimuli - unable to see or hear properly. My head aches and under my skin, the march and burn of - what, blood? Errant fire ants that somehow found a doorway into my system? and the feeling of being no one and nowhere - unable to see, hear, interact, maintain composure, or surface from this state of being - means I need to find a quiet, safe place stat. I rise from the table, I jet towards the front door. Get me home.

I am a woman with sensory DIFFERENCES - welcome to the first D! There is not a single doubt in my mind that I have sensory differences. I am different when it comes to how I perceive the sensory world around me. This makes sense. According to the latest scientific findings, my brain is wired differently. I don't process sensory information the same way as most people because I have structural, neurological differences. It's not unlike someone with Epilepsy or Multiple Sclerosis - something is not the same in the wiring of my brain. And that's totally cool. When I show up to that dinner in the scenario, I am arriving to the party with sensory differences. Of the eight friends, another one of us may also have sensory differences. People make mention of a sensory spectrum which, like human sexuality, represents all possible variations of the human experience, and I am 100% on board with this logic. After all, we know better these days than to say one experience is "normal" and another is not, yet even by using the word "differences," we recognize that we are comparing ourselves to a larger, unique group, and we don't entirely fit in the same parameters. But even still, if my brain is wired differently, then I do have differences. I fall somewhere along the spectrum of engagement with the sensory world, as do every single one of us on this planet. 

The DIFFERENCE - there we are again - is that it doesn't just end there for me. I don't go - gee, I process things in another way than person X - and go about my daily day. My sensory issues impact most moments in my day. They impact my life choices, my decisions - both in the moment and in the goal-setting-future. They impact the people with which I spend time, the brands I select, the type of employment that I choose. In short, my sensory issues impact my entire life. Sometimes I fantasize about the person I'd be without sensory issues. What would I like? Would I bungee jump? Go on safari? Walk the Appalachian Trail? Would I surround myself only with chihuahuas? Volunteer for Greenpeace? Start a band? I can't know because my sensory issues are such that they're an inherent part of who I am and how I experience the world. I'm a woman with brown hair and green eyes. I'm a woman with sensory issues. 

I am a woman with a sensory DISORDER - hey, hey D#2. I'm sure I'll lose some of you right here, and that's fine. What makes what I have a disorder? The term "differences" doesn't cover enough of what I contend with on a daily basis. A disorder considers patterns of behavior and thinking that influence our experiences of the world. I most certainly have a pattern, as do most adults that I know with sensory issues. We react to certain stimuli the same way every single time. Our thoughts, especially for those of us who grew up without a diagnosis, often turn to similar, self-defeating statements in the presence of our reaction to sensory stimuli. Besides this, having my sensory issues makes functioning in the sphere typically inhabited by others complicated. I cannot behave the same way as most, and so I am perpetually struggling to function in an atmosphere that isn't designed for someone like me. In the dinner scenario, I have a DISORDER when I struggle to interact easily with the environment - as I always do. I have a DISORDER when the lights bother me. I have a DISORDER when the sounds set me on edge. Inside, I am thinking "it's ok, you are a trooper, you can do this!" or "dammit, woman, you've failed yet again to maintain your composure in public." These are the words I've always said to myself, the reactions I've always encountered to the information that my brain and body just cannot process. This is my pattern.

I am a woman with a DISABILITY when I can no longer function in a given situation because of my inability to process. When I am forced to leave the restaurant because I can no longer interpret the barrage of sensory information, it is crippling. From within the weird, imprisoned bounds of a shutdown, peering out at the world, detached from my body, unable to hear or see or feel where my fingertips end and the outside begins, I am DISABLED. Toss out your pretty spectrums and hug-a-tree mentality. It's not about being marginalized or belittled or whatever political word you choose to use. In that moment, I am DISABLED because I cannot take care of myself. I cannot take care of others. I cannot handle the responsibilities of adulthood because I cannot see or hear or feel where I am. I am DISABLED because for that moment in time, I am literally negated by my own wiring.

(Side note: My friend/little sensory sister/illustrator of my upcoming sensory guidebook recently wrote a brilliant post on how she is her disability. I am beyond proud of her for making this claim and taking ownership of this particular D-word. It's a must-read!)

For me, saying "oh, it's only a sensory difference" is often too dismissive (more Ds). It's dismissive of the fact that I struggle on a regular basis - and that my struggle is nasty, meaty, and real. It's dismissive of the fact that when I lose my faculties, it is a scary, surreal, hopeless experience. It's dismissive of the fact that I have struggled my entire life in the face of this unnamed, unrecognized, unfortunate bully of a condition that's powerfully shaped who I am and how I engage with the world. 

I am okay with each D-word used, as long as they're used fluidly between the three. To me, they represent different - but valuable - aspects of my sensory life. The flexibility of terminology allows me to dial up or dial down my message to reach others. Sometimes it's important for me to say that I have a "neurological disability," because in the moment, I am actually disabled and need someone to be my eyes and guide me home. Sometimes I like saying that it's a "disorder" to convey the life-long complexity of my sensory issues and their patterns - this isn't just a one-time-thing, this is a life-long thing. Sometimes I prefer "differences," especially when I am trying to reinforce the idea that I am dealing with a uniquely challenging system, and therefore a uniquely challenging approach to the world. 

Like this post or don't, I respect that we all have our own sensitivities to these terms and preferences within them. In my personal book of life, none of them take away the humanness of a person with sensory issues - they only allow for a broader dip into the pool of human experience; they give those of us who are suffering permission to be who we need to be, the full gamut. Differences, disabilities, disorders - just three darling words to help me describe my experience of the world.


12 comments:

  1. Hi my name is Emily and I'm an SPD adult too! Heres my new blog: https://21andsensory.wordpress.com

    Thanks!

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    1. Thanks Emily, I look forward to reading your blog!

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  2. Thank you for this post. It is wonderful to realize other people have the same issues. I just discovered that I have SPD last August (at age 56) and am now seeking help. Praying for all people involved to find answers for SPD.

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    1. Hi Pam, thanks for leaving this message! You are very much not alone and in extremely good company :) Feel free to reach out to me at coming2mysenses@gmail.com if you have any questions, and hang in there - day by day, we're learning more and more abou SPD.

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  3. thank you so much for this post! i am 21 years old. i am SPD too! and mine is sensory modulation disorder over- responsibility. it make me feel depressed because i finally found who i am and what my problems but there is no way to CHANGE this situation. And also, i am frustrated with lack of confidence with WHO AM I. It is hard to enhance my confidence because it began from my childhood...

    P.S. my mother language is not English. sorry for my poor English. thank you so much again! :D

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    1. Thanks WKM! I'm so glad to hear from you, and glad that this post was useful :) There are ways to change your perception of the past and your sense of self in the present. I always recommend psychotherapy (a psychologist, social worker, or mental health counselor) to work on accepting your pre-diagnosis life and strengthening your identity in the present. It's hard to keep looking back at the past, longing to rework everything you've been through - it's ultimately not productive or conducive as you look to build a better future. I personally like Cognitive Behavioral Therapy, or CBT, and I usually recommend this to other SPD adults like you :) With occupational therapy and some physical therapy to more directly target problematic senses, you can live a much happier life - even if you always have sensory issues. Also, I hope you consider joining my online SPD support group here: https://www.facebook.com/groups/SPDAdultSupport/ - I think you'd really like engaging with other sensory people like you and me!

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    2. actually, i am studying at occupational therapy in my university life. Now, i am in year 3 :)
      thats the reason i found i got SPD. and i have ever asked my teacher about how to deal with the problems, the answer is as same as yours-- CBT. i have already found an psychologist to help me(about 1 years) before i found i got SPD! But, it seems that its hard to change my thought...
      the most frustrating things is all my problems make me become withdrawal. Compared to others, i have less life experience. Looking at my classmates, i feel i am the useless one. I am afraid i cant be accepted by the society in the future because i am not as "clever, extroverted, out-going, lively" as others.

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    3. So glad you're studying OT! I'm sure it's interesting. It's very hard to change our thoughts, but so important in dealing with a later SPD diagnosis. Have you been to an OT too? I think the combo would be especially helpful for you. You're not useless and stop comparing yourself to others. It's okay to be different. If you can begin to own this, you'll start to feel more connected to society and others. Keep me posted!

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    4. yes, it is interesting! i am now in my year 3, haven't graduated yet but soon.
      i know that i need to stop comparing myself to others. But, there is another problem with me---preoccupied attachment to others. Since my childhood, i don't have any positive feedback to let me feel i am OK to be a person like me. All information i got were i was BAD, NOT GOOD, USELESS, etc. Until now, i still get these information sometimes(i have been trying so hard to change myself from the past to now.)
      i dont know how to believe myself. I want to believe I AM GOOD, AWESOME, but there is no word in my mind! All i get in my mind is others are better than me, i want to be others...

      it's too nice for you to keep in touch with me. Thank you so much!! :)

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    5. WKM, I so understand. A very common sentiment that I often hear from other delayed-diagnosis SPD adults. Takes some time and some work, but that distorted sense of self does improve. There are still people and situations that will bring it back like a haunting memory, but not much we can do than know the feelings will pass.

      I hope you had a chance to join my FB support group, I think you'd love it!

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  4. I agree that sometimes it really does cover the three D's. I'm sure I have SPD (I'm sure my Neuro would agree if I could be bothered running through all of the 'symptoms' I have). For me I see it as more a disorder because my senses aren't ordered correctly or my responses to them. It's not just a difference, if I were a machine I would be temporarily out of order for having a glitch! Because my SPD is mostly under sensitive it's less of a disabled feeling and more of a from-one-extreme-to-the-other feeling. Like gripping something too tight or too loose or pushing a door to little and then slamming it because I can't notice the difference. You have explained what it is like to be over sensitive (not meaning your personality by the way) really really well. I loath turtle necks, clothing labels, rough cotton/hessian and bright ligh but I can just about deal, so I didn't realise how much of a big deal it can be to others. Thank you for this post.

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