What the heck is Sensory Processing Disorder (SPD)? Also called Sensory Integration Disorder, or, as I call it, “My brain hurts from all the noises and lights and junk. I can’t function or anything, so I’m just gonna go to bed.”
I have found that nobody knows what SPD is, or just how deeply it can impact a person’s life. So darn it all! I’m making a post about it.
First, what the heck is sensory processing?
All of our senses are processed through our nervous system. That is, information is collected by our senses and sent to the brain where it is processed and sorted. Once this is done, your brain tells you how to respond to that information.
Second, what the heck is sensory processing disorder?
The disorder part comes into play when the act of sensory processing goes haywire. The sensory information gathered by the nervous system is not correctly interpreted by the brain, which results in numerous symptoms and behaviors.
What happens then?
Well my friends, if your brain does not know how to understand the information that it is being fed, you’d better believe that your response to it will also be quite messed up.
For people with sensory disorders, the resulting behaviors from a malfunctioning sensory system can vary tremendously. For some, they turn-inward and become still and quiet. For others, they lash out and have a loud, head-banging, arm-flailing meltdown.
Personally, my body shuts-down. I cannot talk (or make sense when I do speak), or walk straight. I am disoriented, irritable, crying, and feeling completely detached and ill. The environment becomes simply too much to process, so my brain tells me to just turn off for a while.
What’s it like living in a sensory world?
As you can imagine, living with SPD is, shall we say, challenging. All aspects of living on planet Earth require that you have a functioning sensory system. This is especially true in Westernized societies where sensory stimulation is considered fun and enjoyable. Of course, it becomes less fun and less enjoyable when your brain cannot process sensory signals the way they should. The world becomes unexpected, chaotic, frightening, and confusing. Basic aspects of life such as taking a shower, cooking dinner, seeing friends, working, going to school, watching television, or eating become a battle.
Imagine showering if the feeling of water dripping on you made you want to run for your life, or the water temperature feels painfully cold for you, but to everyone else and their brother, it feels fine.
Imagine going to school where the bus is bumpy and the radio is painfully loud, and the seats are shiny and feel different and ugly on your skin. The children are noisy and they move fast, and the teacher gives you white paper that hurts your eyes to look at. Your hand won’t hold the pencil, and the lines and words are jumping and moving. In gym, you are terrified of climbing the cargo net but you love crashing yourself into the blue cushy mats. In art, the thought of finger-painting makes you cry, but you love cutting paper or looking at shiny scissors.
Imagine you can’t get a job because the store has fluorescent lights and the customers are loud, and have screaming children. Your job requires you complete tasks for countless hours in a sensory-filled environment. Your clothes are itchy and too tight. The feeling of denim or fleece is awful, but you have to wear it. There’s a tag in the shirt that makes you want to scream.
Imagine you try to eat dinner but the smell of food makes you gag, and the feeling of the food in your mouth is unbearable. But you love to touch it with your fingers because your body tells you that that makes more sense, and it doesn’t hurt.
WHAT I’VE LEARNED…
Here I am now, age 22. My sensory disorder still plagues my life. When I reached my teen years, I found that therapy to help me cope with this disorder was virtually non-existent. They assumed that because I was 13 years old, I was able to do all the therapy on my own. I find this disturbing. It’s not like sensory problems go away. They can be managed and treated, but as of right now, this problem is not curable.
Even worse is the fact that the majority of people – both the general public and professionals – are either blissfully unaware of sensory disorders, or they don’t believe in them at all. Yes, you heard me. Many “professionals” do not think sensory problems exist.
When I ask people if they know about SPD, they respond either “no,” or the conversation goes like this:
Yeah like karate. UGH. BOW TO YOUR SENSEI.
SOME MORE THINGS I’VE LEARNED…
SPD is unrecognized in many people, aka: loads of people living with this disorder go undiagnosed. These people – young and old – have struggled their entire lives being deeply impacted by the challenges of living with sensory issues. I also feel that the sensory components in autism are severely neglected. In fact, I believe sensory problems are a huge factor in autism and the reason why autistic people behave the way they do. Autism is not just about communication problems.
People generally don’t know much about autism (like the gentlemen in the illustration above) even though a huge number of the population live with this neurological disorder.
When researching autism, I found hardly any information about the connection to sensory problems. Everything was focused on communication and social skills. I recently read Temple Grandin’s newest book The Autistic Brain: Thinking Across the Spectrum. I was delighted to FINALLY see that she too noticed a huge lack of discussion about sensory problems in autistic people. Temple Grandin, you stole my hypothesis!!
I believe autistic behaviors stem from sensory overload (or under-load). Meaning, autistic people behave the way they do (social problems, little to no communication, meltdown, stimming, detachment/zoning out, need for routine, etc) as a way for their mind/body to cope with the sensory processing malfunction.
THIS, I feel is the most neglected part of autism, and it is neglected because sensory processing disorders are neglected across the board.
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Any thoughts/comments on SPD or related issues, leave a reply below. I love to see feedback or discussion! 🙂
xoxo kelly
Eating Off Plastic 
Very good point! (and I love your illustrations… they remind a bit of Hyperbole & a Half)
I have sensory processing issues too (but not a SPD diagnosis). I’ve had huge social difficulties during my lifetime and particularly when I was young. That was probably obvious to people because I didn’t make friends or integrate socially and in most cases, didn’t know how to small talk and be part of groups in situations where that was expected.
What was not as visible was my trouble coping with the sensory chaos of those same situations. It was a big part of the reason I couldn’t cope with school and had to drop out. I have written about that in this post (Starting with “Coping with chaos”); sensory overload played a huge role in my trouble coping with recess, which was the main reason I couldn’t cope with my social difficulties / that I could not just stuck it out and finish primary school and continue through high school (another sensory nightmare) despite social difficulties, although I was academically strong all the way through school.
(the focus of the post is on the social side, but the sensory mayhem of school radiates through the theme)
Hi there! Thanks for your comment – I just read your post about noise sensitivity and was sitting here with a big smile on my face because you sound JUST LIKE ME. At the same time, I was sad knowing there was someone else out there dealing with what I have to deal with. Socially, I am very similar as well.
I couldn’t open your post that you had linked in your comment. When I click it, I get “Page not found.” I will keep trying to look!
xo kelly
Thank you … I’m glad you can relate! I was very happy myself to find out that I am not the only person on the planet to deal with these sort of issues! (when I found out a few years back)
Sorry about the link… the “Page not found” site it points to is even on your own blog! ;-D ridiculous….
Here is the real link. (and if not: the post is named “Becoming an adult” and located here: http://mados.wordpress.com/2012/07/06/confidence-and-chaos/). The sections that are SPD-relevant are “Coping with chaos” and “Breaks between classes = total limbo”.
(Aw what…. The second link got autoformatted? That was supposed to just be for copy-paste, just in case the link didn’t work…)
I’m going to post a quote from Mados that I love:
~ Mados, About sensitivity to background noise
I’m not sure what to think about autistic behaviours always stemming from sensory processing disorder, but I agree on SPD being widely misunderstood. The usual reaction seems to be “well, you’ll simply have to try harder to ignore all those things then”. Which is just not working. So posts like yours can hopefully explain this thing to others and maybe get some understanding. The drawings and examples are great!
Ha! That’s a great quote from Mados’ blog! I read the whole post, it was all so true.
Thanks for your comment about SPD and autism. I have no proof about my hypothesis about autistic behaviors stemming from SPD, but I think they are WAY more deeply connected than people even realize, which was what I was trying to convey in my post. Like you said, it’s widely misunderstood, unfortunately. And yes, that is EXACTLY the usual reaction – people just don’t get it! I guess that’s why people like us are blogging about it – trying to get people to understand. Maybe one day….
xo kelly
Thank you!
I agree that autistic behaviors stem from sensory overload or underload. One example: I wasn’t able to participate in class because we had unstructured discussions, where everyone talked and yelled all over each other. It was sensory overload-I needed to keep up with what everyone was saying, so I stopped talking altogether to focus on that. I find I talk more when I feel like my environment will sound and feel quiet.
Yes I struggled with that as well. That was the main reason I hated school – the fact that most of my peers were immature and noisy. They had no concept of structure. Noise in the classroom also meant an unhappy teacher and an unhappy teacher was most likely to raise his/her voice which I found very upsetting.
Thanks for your comment!
VERY well done article – and I *love* your illustrations.
FYI: I’m linking this article to the first in a Series I’m writing on SPD and Sensory Defensiveness (close, but not the same) on ADDandSoMuchMore. It includes a ton a references to a lot more comprehensive information – some specific to Autism, some not. And boy are you right about the disorder being neglected. I could cry over what the new DSM decided (about a LOT of things – and I’m not the only one weeping either).
ANYWAY – I’ll ping you when my article goes live later this month (Nov 2013), so you can pop over and take a look.
BTW – I welcome links to anything else you write on this top too. Leave them in the comments section of any of the articles in the upcoming series. If they’re anywhere NEAR as good as this one, I’ll move them up into the article (not everyone reads the comments).
~~~~~
Madelyn Griffith-Haynie, CMC, SCAC, MCC
– ADD Coach Training Field founder; ADD Coaching co-founder –
(blogs: ADDandSoMuchMore, ADDerWorld & ethosconsultancynz – dot com)
“It takes a village to educate a world!”
Hi there! Thanks SO much for the response. And yes, I’m crying over the DSM as well. Just gotta keep working at it, I guess. I’ll check out your blog, and your future articles about SPD and sensory defensiveness – it sounds interesting.
Take care!
-Kelly
Super! Sound Sensitivity is just the intro – and it goes thru each of the modalities at a BASIC level, so my readers can relate. We’ll drill down as time goes by.
Let me know that you’ve been over AND be sure to let me know if you write anything that needs to link to future posts (or past – I update links periodically to keep things Evergreen).
It takes a village, right?
xx,
mgh
Reblogged this on 21andsensory and commented:
Great post on what the heck sensory processing is all about…
My 6 year old son has always been sensitive to noise and lights, although it has gotten much better over the years. When he was a toddler he would stand there with no expression on his face for a good 5-10 minutes when he went into a room with people. We would go to the same playgroup every week and he would still need to do this before he could start to play. Then he was fine to play. We just knew he needed a warm up period and tried to make sure people knew to leave him until he was ready (adults have such a tough time leaving kids alone). As he got older we realized the amount of detail he noticed, and it made a lot more sense when he walked into a room with bright lights, sounds and movements that he would be so overwhelmed with noticing it all. As you said in another post, he would just shut down for a bit. Now he is in grade 1 and he rarely seems affected by this, but I wonder if that is why he is so tired at the end of the day. You had written about being exhausted from going to college from the anxiety. He is very social and loves to play with his friends but he has no energy left when he gets home and on the weekends. I wonder if he is experiencing more anxiety than we realize. We used to focus on doing this to help him regulate and I wonder if he needs to do more of this to cope with the school day. Have you tried any mindfulness and, if so, has it worked for the anxiety? I would love to hear your perspective on this from your experience (even though I know it is to a much lesser degree for my son).