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Sensory Processing Disorder
Books about Sensory Processing Disorder (SPD)
Quick Things You Need To Know, while also remembering I’m not a doctor, just a person with SPD, so this is just a basic rundown that is incomplete and likely flawed
- Sensory processing disorder (SPD) is falling out of favor as a diagnosis because it’s simplistic – sensory disorder is usually intertwined with other conditions and disabilities.
- I’m using this term because it’s clear in what it is – a label for folks who have a response to sensory stimulus different from a neurotypical person.
- SPD is diagnosed by outsiders – which means they measure response rather than what a stimulus actually feels like. Which makes diagnosing it muddy and confusing. Some of us just don’t show when things hurt on the outside. Again – this isn’t a perfect term.
- SPD is a varying scale
- Some folks find sensory input INTENSE and overwhelming
- Some folks find sensory input dampened and are almost kinda numb to it
- Some folks can sense a thing and react to it, but can’t easily identify where it’s coming from
- Reactions to sensory input are also a varying scale
- Some folks avoid sensory overwhelm by distracting themselves with other sensory input (stimming is a common thing to do)
- Some folks seek sensory input (again, stimming is another good example, but the motiviation is different, even if it looks the same on the outside)
- My understanding of SPD is from my own experience. Some of my understanding is as an observer of my sensory-seeking kid.
- Reactions and experiences of SPD are not a constant. We can be can be sensory-avoidant for some types of input, and sensory-seeking for other times. This can also vary over time, based on our mood and outside stressors.
- You can have SPD without being autistic.
- Most (but not all) autistics have some level of sensory processing disorder, although it’s not really called that when it’s co-morbid with other neurodivergence.
- These are the books I’ve found that touch on SPD. As always, most of them are written by outsiders, which makes them shallow and pretty judgy and stigmatizing
- All of the approved books on this list would work well in a neurodiversity library
- I remain intentionally vague about which of my kids is neurodiverse and disabled because who knows what kinds of bias will be against him when he’s older and I don’t want that google-able. So we’ll identify my kid with SPD ‘sensory-seeking kid’ (SSK)
Here’s what SPD looks like for me, as an example:
I have to turn down the music in the car so I can focus on driving, cooking, or thinking, because noise is too much. Background music, computer bleeps, register key taps, vents, fans, breathing sounds, stuff like that – I can’t think or concentrate when they’re going on, and I can’t block them out or get used to them. My partner used to insist on sleeping with a fan on us, which was pure torture, so for a while we slept in separate bedrooms. I couldn’t sleep because between the breeze on my skin and the sound, I felt like I was under constant attack.
I know this, because I am a grown-up and I’ve learned the part of being autistic means my response to sensory stuff is different than allistic people. I don’t make the immediate connection of “This sound is intense, it is stressing me out, I am having a meltdown.” As a child I’d just… have a meltdown. And I had no idea what was wrong with me or why I was doing it.
Some sounds are so excruciating I want to turn my skull inside out and hide ten miles under the earth (this is hyperbole). Styrofoam, balloons, comb book bindings, corn cobs, lots of bird sounds – I’d rather deliver a baby without medication than endure these sounds. My sensitivity gets worse when I’m sick or stressed, including pregnancy – the sound of my partner putting away spoons was so painful when I was pregnant I would run away when he did it.
Sound is my particular bugaboo, but I also can’t wear regular bras, and even sports bras have a limited life before I rip them off screeching. I don’t wear clothing with tags, stuff that touches my neck. I can’t have hair touching my neck. I need familiar fabrics, soft ones, nothing slinky. Light touch makes me gasp like I’m being murdered.
My aversion to smell keeps me locked into the house. I’m terrified of airplanes because of this one trip I took when a flight attendant wore perfume was excruciating. I hold my nose when people are within five feet of me, and breathe shallowly through my mouth so I don’t smell them. Otherwise I might barf.
I can’t deal with grocery store shelves. Too many things, too many colors, too many shapes. Add to that the ambient music in the background, the screeching sounds of carts, people talking, the flickering fluorescent lights, those bleeps and boops at the register, it’s hell.
HOWEVER. I can block things like this out and shift this focus with the right accommdations Creating artificial tunnel vision through a camera viewfinder helps. Focusing so hard on composing a picture (and adjusting the focus of a lens) helps me block out auditory sounds, to the point where I won’t even ‘hear’ what’s going on around me.
When I am stressed, I seek pressure (weighted blankets, deep pushing pressure) and that takes my mind off of things. I fidget, play with stim toys, bite my lip, flick my fingernails, jitter my knees, and hyperfocus on those stims to distract myself from overwhelming stuff. If I can control a sound (hold a balloon), it hurts less than when I can’t (someone else is holding a balloon.)
Contrast that with other folks, who might not notice these things, or might enjoy them. While most of my life when I’m alone exists in the closest thing I can get to silence, once my kids get home, my SSK kid LOVES NOISE NEEDS NOISE ALL THE NOISE ALL THE TIME. His natural voice volume is the kind of voice you use to cheer at a basketball game, and he literally shout-sings himself to sleep until he collapses into unconsciousness. I don’t like to be touched without lots of warning, and he spends his entire life seeking pressure by trying to climb into other humans (but particularly me) like Luke skywalker in a tauntaun. Which is, of course, is very unpleasant for me. But that doesn’t make him a burden any more than it’s a burden for him to live with someone who needs quiet – it’s just a thing we have to deal with as co-habitators.
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Quick & Messy Book List:
Great books normalizing self-care
Since many folks who experience SPD are shamed for self-soothing or avoidant behavior, these are great books that show there is no shame in removing yourself from a painful experience and seeking a safe space.
- Benji, The Bad Day, And Me (Pla) – Benji doesn’t CODE as autistic – he IS autistic. But we see how his needs to deal with sensory overwhelm and running out of spoons is accepted and accommodated by his family. You can read more about why I love it here.
- charlotte and the quiet place – positive, normalizing auditory overwhelm and showing that it’s okay to seek quiet spaces for self-care. Auditory sensory overwhelm. Don’t confuse this with A Quiet Place (Wood) which is a super boring and not helpful book.
- Leave Me Alone – Grandma with sensory overwhelm from being stuck in a crowded house with a ton of grandchildren. The story is silly and a little surreal, which we love. I love that she’s allowed to seek quieter spaces, and it shows that she is able to come back to withstand sensory overwhelm after taking a break. General sensory overwhelm. Worth noting that SSK loved this book so much he wrote a fan letter to the author, which he has never done before or since. Sadly, she never responded.
- Through With The Zoo – grant – goat in petting zoo searches for a place to go unmolested without people touching him. finally finds a space, but gets lonely. realizes he can go back and forth and give himself space when he needs it. illusrations are adorable and funny.
- Both They she he me: Free to be! and Benny Doesn’t Like To Be Hugged include a character wearing earmuffs in the background. This doesn’t seem like a big deal, but as that teenager wearing earmuffs through the halls of high school and the only adult I know who wears earmuffs in restaurants, it’s nice to be seen. There’s a lot of shame involved with wearing earmuffs and I get a lot of weird looks. Like the kinds of looks where someone suspects I might be a serial killer. So I appreciate getting some token normalization in kidlit when possible. I’m still waiting for a kickass main character who rocks magenta polkadot earmuffs.
Helpful books
- The Noisy Airplane Ride – The constant sensory assault of airplanes is excruciating for me – to the point where I can’t be on an airplane with my kids, and would rather never travel at all unless someone is dying. One of the ways I manage my SPD is by preparing for it – finding out ahead of time what to expect, so experiences are less sudden and jarring. This gives me a sense of control. So books like this, which go over the sounds to expect during an airplane ride, are super helpful to prepare kids before experiences. Sadly, the illustrations on this are dark and boring, so most kids won’t want to read it just for fun. It’d be handy before and during an airplane ride though.
- I’ll tell you why I can’t wear those clothes (noreen o’sullivan) this is a SPECTACULAR book (actually a workbook ‘drawing journal’) Asks questions like “what is hadr for you to do? with a blank square page to write in or draw in. facing page shows photo of a white girl with a range of emotions, with overlaid text like “Things that are easy for other kids to do can be really hadr for me, like putting on my clothes and shoes. It’s just that the way things feel can bother me. So I call it ‘The Annoying Thing’” POV is from the child and validates her experience rather than suggesting she muscle through it. Really this book could work for ANY kid, gets kids to think about what they can do for self-care, what things they need to practice, who they can turn to for comfort. I LOVE this book and every child should read it. Probably best for 4+ but could work for kids as young as 2.
- Sometimes Noise Is Big – another one featuring actually autistic people & folks with SPD. This isn’t a story, it’s just a bunch of pages featuring stuff like “Sometimes noise is too big for my ears.” Which is a very allistic way of phrasing things, but okay. It was helpful, but a boring read.
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Meghan’s world- Diane Renna – You know, this book was so boring and forgettable it completely fell off my radar so I’m just working from my original notes. What it’s like to be overwhelmed by sensory stimulus, some of therapies and practices an OT directs to go on a ‘sensory diet’ to provide sensory preferences (like her mom brushing her hair and skin) and sensory sensitivities to reduce them so she can concentrate. Introduces some tools and therapies you can do at home for ideas and normalizes some things kids may do or see friends do. Shows her and her mom, who also has sound sensitivity so they could do auditory therapy together, brief mention in schedule of therapy and nutritionist, various other therapies like vision therapy, gymnastics and other things she does at home to manage SPD with a full rundown of resources at the end. Not worth reading to the Earthquakes because it’s too boring.
Recommended with reservations
- this is gabriel: making sense of school – steiner. Ages 4+
- Pros: Gabriel models examples of ways to handle overwhelm, which SSK found super helpful. After reading it, he was better able to verbalize his needs like “I NEED TO MOVE!” or “I NEED TO BE SQUISHED!” The cover was unengaging, but the open flyleaf, with stylized text listing the 7 senses (YES FINALLY SOMEONE INCLUDES VESTIBLAR AND PROPRIOCEPTION!!!) was handy. I love that for the most part he’s a normal-looking kid, not drawn as some kind of monster (yes this is a thing). The first page explains how differentiating between types of smiles is hard and clutter makes it hard to focus, which was PERFECT for explaining this to SSK in a way no other book has ever done. It works well for both kids with and without SPD so they can see it from gabriel’s perspective.
- Cons: My reservations are in the language and overall stance that the author has stigmatizing neurodivergence. She fits firmly within the autism-warrior-parent community, who believe neurodivergence is a flaw. Her ‘oh poor me’ updates on social media are gross, and she isn’t shy about explaining how much she despises her own child’s differences and what a burden he is for her. On the first page, she states “his brain doesn’t understand what his senses are telling it which often causes him to react inappropriately.” (my emphasis). ‘Inappropriate’ is subjective. Allistics waste my damn time talking about the weather and I find it inappropriate and disrespectful of my short time on earth, but I’m not going to shame them for it in a children’s book. Unless we’re hurting someone else, neurodivergent people don’t get to determine what is and isn’t an appropriate response to pain. And of course there’s no story, it’s a purely didactic book because makers be lazy.
Most of the redirected activities are fine, although it lumps in oral stimming with ‘taste’ and maybe this is a thing for other folks, but for me and most of the oral-stimmers I know of, my oral stim isn’t taste-based, it’s tactile. (Otherwise we’d stim with candy or things with taste, not chewies which have no flavors). This gives me pause and I wonder how much the author actually understands and who with SPD she’s actually listened to, and how much of it is her guessing out her ass. She also centers neurotypicals in this book, presuming kids & adults with SPD aren’t competent enough to read this book on their own. Text like “Having understanding friends, an educated teacher and a support staff made up of Occupational Therapists, School Counselors and other specialists that are familiar with SPD is key for every child struggling with sensory issues.” That’s not written for me – that’s about me.
Synesthesia
For whatever reason, synesthesia isn’t stigmatized the way other sensory disorders, but it is a disorder, it’s senses that work outside the average order of what society expects. So screw it, I’m putting it in here. AND it’s often co-morbid with other forms of neurodiversity. I’ve got a little bit of it, but not the interesting fun kind that makes me a good musician or artist. Just the weird boring kind that makes me associate sounds, concepts, and feelings with colors and patterns. It’s doesn’t hinder me in any way and it’s kinda fun because stuff like making out with someone comes with neat visuals.
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The noisy paint box: Kandinsky -rosenstock – We found it boring at 5.5 even for my kid who is really into art and painting. I’m gonna try again at 8. I’m not sure anyone who doesn’t have synesthesia would be particularly interested in this. I asked my kids if they ever had this experience and they were like, nope. ages 8+, art history, abstraction
- Jimi sounds like a rainbow – golio – I loved this since I’m a Hendrix fan and his music makes ALL THE COLORS AND TASTES AND FEELS! but the kids didn’t care about it because they have shitty taste in music (WHAT. THEY DO.) Art was perfect for the subject matter but both 4.5 and 6.5 had a hard time parsing it. having a guiltar and ukele on hand made it more exciting, but the kids had a hard time sitting through it, might be better for 7+ Black history, music, drug addiction (doens’t directly address, but humanizes him, and there are notes on this handled well in the end notes). wealth inequality – how he had to prioritize so he could save up for guitars. single parent (father) family constellations. referenced Elvis and. Q is like ‘who is this elvis person i keep hearing about?’ and we discussed why the book mentions Muddy Waters but Q has never heard of him (he has, since he was in other books, but Muddy Waters doesn’t pop up as much in everyday culture) and Lightnin’ Hopkins, Howlin’ Wolf. Aside from the book, we discussed how Elvis is more famous – because he’s white, and handsome, and how appropriated Black music and profited off of it and is more famous than the folks who were way more creative (not mentioned, maybe because the author is white dude writing about Jimi and that’d be too on the nose?). Experimenting with art, innovation, practice, how he uses his music and love of art to ‘paint with sound,’ white author, Black illustrator.
- The girl who heard colors – marie harris – not particularly interesting. introduces kids to the idea of synesthesia, but not in a great way, as it uses literal language “When she heard a dog barking, she saw bright red.” Well…no. you don’t literally see flashes of bright red, at least I don’t. It’s not a hallucination. this implies that we’re having visual hallucinations. Neither author nor illustrator appears to have synesthesia, which is RIDICULOUS since there are so many illustrators who have it and it can’t be that hard to find one. for example, at the end she quotes a student who says “I know the letters in a book are black, but I see them in color when I read.” and that is the opposite of how it’s depicted in the book (white letters in a red bubble), which again, isn’t how this works. It’s not a form of blindness or altered vision. Keeps using the word “see” when that’s not really true, and given the comorbidity with literal language communication disabilities and synestheisa, it’s silly to write like that. alss harps on the FIVE senses, as if there really are only five senses (there are more), and it’s not what I want to teach my kids. the peak of the story is that she gets bullied for claiming to see color or hear colors or whatever. which is fine, it adds a story to the book, but I mean, maybe she should have been more clear? kinda okay as an example of how a disability is only a disability if it’s socially misunderstood or unacceptable to think differently though. But it’s just…terribly written, not comfortable with anything younger than 5, although it SHOULD be fine for preschool if they took more care to write it correctly and actually have it illustrated by a synesthete.
Problematic – NOT RECOMMENDED
- Any book with a comb binding. Screeeeeaaaccchhhh… ::screams in agony::
- squirmy wormy: how i learned to help myself (wilson) Uses person-first language “I have autism and SPD” and supremacist functional labels, describing the author’s son as having ‘high-functioning autism.’
The whole thing isis judgy AF “I am learning why I do some of the silly things I do and how i can help myself.” You don’t get to define what is silly v. normal, dude. Reacting to pain is not ‘silly’ and this is denigrating and shaming. Here’s how this book works: When he wants to watch the ceiling fan spin, what he ‘really needs’ to do is go to the park and spin on the merry go round. Okay, first – why he can’t look at the damn fan? Who the fuck is he hurting by looking at the fan? LET HIM ENJOY THE FAN! I bet this maker is totally cool with binging Netflix, so do we take them away from home and throw them into a warehouse rave, simply because they enjoy noises and watching flashing lights in a box? NOPE. When he’s running, he needs to be squeezed (again…what? those aren’t even…), when he’s watching words scroll on a screen he needs to jump in a jumper (…no). I like the IDEA of him helping himself and finding ‘better’ ways to manage when he’s feeling sensory needs, but the format of the book is confusing and not great if you’re an autistic kid who takes things literally. Also why not just…find him a better place to run? Or let him watch stuff scroll? Who exactly is determining what is ‘appropriate’ versus ‘silly’ behavior?
SECOND, when i feel like i want to watch something spin, that’s a visual stim, not a vestibular stim. The author is replacing soothing behaviors with alternative behaviors that don’t even make any damn sense.
THIRD, It’s terribly written and illustrated. So lazy. WE DESERVE BETTER. Creepy illustrations with skeleton people and pupil-less unblinking eyes. Nightmares! - Why does izzy cover her ears – very negative. talks about the various ways SPD makes regular classrooms a torture chamber (okay, yes, true.) the illustratons were so awful and I had to do linguistic gymnastics so my SSK didn’t feel like a complete reject. Neither kid could sit still through more than two pages, so boring. It was a complete mess. I get that trying is better than not trying at all (sometimes) but I’m really starting to doubt that because DAMN there are terrible books out there, we shoulda saved some trees.
- Arnie and his school tools – “My mom says that when I grow up I probably won’t be an accountant like my dad.” NOPE. Fuck you, Arnie’s mom. The absolute best math teacher I ever had in my life was both dyslexic and ADHD and he did advanced algebra like a BOSS. This stereotypical BS has to die. Crap like this just reaffirms my suspicion that parents who don’t tell kids about their own neurostatus labels are doing so because they’ve internalized all kinds of bias and shame about it. Ain’t nothing wrong with labels unless you think folks with those labels are inferior. HARD PASS.
- Learn to have fun with your senses – taylor – Repeated use of the phrase “overreacting” to sensory stimulation. Suggests doing these therapies just because someone wants you to do it and not because YOU want to is acceptable (coercion), explains that the sensory stimuli won’t bother you as much (kind of like extinction theory of feberization). Okay, sure, with some cognitive behavior therapy that is driven and motivated from the self (not coerced by others) this can work sometimes. BUT, most often, we just learn to hide our pain and become less visibly responsive. Coolcoolcool so I’ll just punch you in the kidneys and when you scream in pain I’ll be like “you’re overreacting. Let me punch you again and again and eventually you’ll get used to it.” This book advocates gaslighting, coercion, and child abuse.
- Ovis has trouble with school – beins – More lazy cash-grab filler books. shitty art and shitty writing. hate the repeated use of “Teacher, I feel b-a-a-d!” (because he’s a sheep, for some reason?) the purpose of this metaphor is lost on me.
- Sensitive Sam – roth-fisch – more crap junk books with terrible illustrations and writing. references him being ‘bad’ which I would work myself into a rage over, except the book is so bland it’s not even dangerous because no one will ever choose it off a shelf and no kid will ever sit through it.