It’s really hard to describe autism to people who aren’t autistic– or even who are autistic but have only been exposed to the medical model. But, this tool, your brain story, may help you to better understand yourself or your autistic loved one.
We know that autistic people have sensory differences, but what that means for each person can be confusing and vary dramatically from person to person. While one person may love touch and be a big time hugger, another may avoid it at all costs and melt down when touched unexpectedly. One person may be sensitive to even the faintest sounds while another doesn’t even notice the screaming and laughing kids playing in the room.
And sensory is much more than just the “big five” senses everyone knows about. All of our processing is sensory processing.
An Uneven Distribution of Resources
Autism is not well understood and definitely can’t be narrowly defined, but one thing we do know is that most non-autistic brains are wired very similarly, and autistic brains are wired very differently, from each other and from non-autistics.
What that means, in a very oversimplified manner, is that some areas of the brain have more neural connections, more grey matter, or are more developed than is typical– sometimes MUCH more, and other areas of the brain have fewer neural connections, less grey matter, or are less developed than is typical.
Sometimes, those neural connections take an alternate path (and you have synesthesia), and sometimes the brain compensates for poor function in one area by making up for it in another area.
Daniel Kish, a Blind man, rides his bike at high speeds through densely populated cities and through mountain trails. He does this by making a clicking sound that literally helps his brain to “see” the outline of shapes in his environment. He uses echolocation just like a bat or a dolphin.
We know from people who experience traumatic brain injury that their brains often find very unique ways to perceive the world, and sometimes that comes with extraordinary gifts or totally unexpected challenges.
Having a brain that has an uneven distribution of resources means needing a world that is built to accommodate the way your brain functions– but autistic people and people with other neurodivergence do not have that luxury.
Understanding how our brains are divergent, as individuals, can help us to brainstorm ways to adapt our lifestyle and environment to meet our needs.
While this tool is oversimplified– a lot— it still provides a great starting point to understand your neurology.
Introducing Your Brain Story
Below are two variations of the same worksheet to accommodate your preferences for printing or digital illustration:
Here’s a printable PDF link to the white version with the black icons.
Here’s a printable PDF link to the black version with the white icons.
What do these mean?
I’ll explain!
But first, one more disclaimer that this is a very over-simplified way of how the brain works. This sheet will be more like a metaphor and a beginning place to understand your neurology. Also, this is not the total of your sensory experience, and how these systems interact with each other can also be complicated.
Sometimes you may experience a system very intensely, with so much detail that it’s too much to process. This can cause a lot of distress. If you have low connectivity to a system (again, an oversimplification), then you may engage in a lot of behaviors to stimulate that system adequately and feel compelled to do intense behaviors to meet that need.
We can use this brain story sheet to show how intensely we experience certain sensory processes. This does not mean how much we enjoy them, as sometimes our most-connected areas are the ones that cause us the most stress. Also, sometimes we don’t just have “more” or “less” connectivity to a system. Sometimes that connectivity is atypical and takes the scenic route.
So, feel free to get creative and do as many versions of this sheet as you need until you feel itās accurate. If nothing else, it will get you to think about our sensory experiences and how they impact your behavior, desires, and personality.
Glossary:
Some of these images or sensory systems may be new to you, so here is a brief glossary of some of the less frequently discussed sensory processing functions:
Interoception: this is your body’s ability to sense and identify what’s going on inside your body, like your hunger, thirst, emotional life, heart rate, need to use the bathroom, and to regulate breathing.
Neuroception: this is your sense of threat in your environment that activates the sympathetic nervous system, or the “fight or flight” reflex. This can be activated by anything that threatens a person’s ability to stay regulated sensorily and emotionally.
Gross motor: this is your “big body” movements, or movements that originate from your trunk, like walking, dancing, and washing dishes.
Fine motor: this is the more small movement tasks from the hands, like writing, making jewelry, and buttoning a shirt.
Push/pull: some people have a need for creating a lot of resistance with their bodies, like weight lifting, moving furniture, tipping their chair back on two legs, or rock climbing.
Temperature: this is simply your body’s ability to tolerate hot or cold temperatures.
Pain: this refers to the body’s ability to tolerate pain. Having too high pain tolerance can be life threatening because a person may not realize when they need medical attention. Also, tolerating dislocations, hernias, slipped discs, and more can cause permanent damage or medical emergencies.
Time perception: this is your ability to sense the passage of time, estimate how much time a task will take, and to understand how far away a future event is. People with poor time perception may not be able to estimate whether something was five days ago or five weeks ago, may feel like every day was “just yesterday,” and typically have a problem with being late because they underestimated how much time they need to get ready.
Love of words: this is how much affinity a person has for language itself, either spoken or written.
Spatial awareness: this is how well you can understand yourself and objects in three dimensional space. People with poor spatial awareness may not be able to estimate how far away something is, often knocking over drinks because they thought they were farther away, opening cabinets onto their face, and bumping into people.
The Sensory Experiences
Neurotypical (NT) people experience relatively similar distribution of sensory experiences, so their balanced processing allows them to do more without being overstimulated and exhausted, melting down, or shutting down. Below is an example of NT Betty’s brain story:
Note: the examples below are missing a nose for the sense of smell. The PDFs above have been updated.
NT Betty
As you can see, there are variations in NT Betty’s brain functions. Her thicker lines are the more intensely-experienced systems.
She experiences sight more intensely than other processes, so she probably enjoys really tidy, organized spaces and notices when things are out of place. Since she has strong gross motor, movement, and push-pull, she probably enjoys doing physical work.
NT Betty’s taste sensation is weak, so she probably uses a lot of salt, hot sauce, and seasonings to make her foods more flavorful. Her love of words isn’t that strong, so she probably won’t be reading this article but might like the picture on Instagram.
Even though NT Betty has definite strengths and weaknesses and preferences based on her sensory profile, she would be able to function well in most typical environments as long as there weren’t other significant barriers not related to her sensory profile.
Nothing about NT Betty’s sensory profile is disabling or would consume her focus trying to balance it against her external environment.
Kate of Dissent by Design
Kate Jones, who does many of the illustrations for NeuroClastic– including this brain story– offered her brain story as an example. Kate is autistic, dyslexic, and Deaf, for reference:
I have pretty great fine motor skills, and I use this for work as an illustrator, but also to support sensory systems that arenāt as strong. My hearing is not reliable because of damage to my cochlea, and ADHD impacts my short-term memory and attention (see all those pieces of information leaving my brain like paper planes?)
Not being able to hear well or retain what I can hear presents challenges in lots of context e.g education, work, etc. Drawing is a way to regulate my attention as well as capture and sort information. I have aphantasia and canāt hold images in my mind, I think thatās why Iām so compelled to draw– there are images that I want to be able to hold on to, and I canāt do that internally, so it has to be external.
Pain: I have Fibromyalgia/ME. The tender points associated with fibro are represented on my brain story. I have quite a high pain threshold, but my baseline is already a significant amount of pain.
Because thatās normal for me, I tend not to talk about it, so people donāt know. Instead, they might notice that Iām super whiny because I have a minor injury like a cut or a burn, or perhaps a headache from a fever. I seem like I have a low threshold for pain because you canāt see what my normal is.
Time isnāt real.
Movement: Iām not someone who dances and spins. Most of my movement and stims are in my hands and feet, but theyāre super important for my regulation.
Rhythm is really important to me. I love music and am a trained musician but more than that, I find the rhythms and pattern in everything. I listen to people for a living (which might seem strange because my hearing isnāt great), but I support my hearing/listening with my sight, with my neuroception, and the patterns and cadence of language.
Thereās so much more to communication than hearing. Everyone has a pattern and a rhythm. I recently knew that a poem (later published on NeuroClastic) was written by Anantha Krishnamurthy because Iāve read enough to know the shape and rhythm of his words. People who process language and patterns in the way that I do never doubt that nonspeakers are the authors of their own work. Language is as unique as a fingerprint.
When I stim with my hands, thereās always rhythm. What the rhythm is depends on what Iām regulating (regulation doesnāt always mean calm).
I struggle to regulate temperature naturally. It fluctuates a lot over the course of a day, and I have to manage it manually. My thermoception is super analogue.
Long-term memory is GREAT but not stored chronologically. Iām a very unreliable witness to my own life. If you ask me about an event in the past, I can almost always tell you where I was at the time, the position of other people in relation to me, and all sorts of other sensory information like what sounds were going on, what I could see, whether I had a taste in my mouth, what the weather was like, how my body felt (to some extent), and sometimes all of that will help me date the memory.
When someone shares something important about themselves with me, Iām probably going to remember that forever. Verbatim.
And Here’s My Brain Story
For reference, I have traumatic brain injury (TBI), I’m autistic, ADHD, dyslexic, have synesthesia (experiencing one sense as other senses simultaneously, like hearing colors and shapes or feeling movement with sound, and seeing spoken words like captions, to name a few), have a tic disorder, have had seizures, a few communication disorders, apraxia, and am cross dominant (left eye, right hand, left foot). I’m a whole developmental diagnosis constellation!
As you can see from my very faint fine motor line, and from the chaos of my drawing, fine motor skills are not a strong suit for me. My love of words and long term memory are much more intense than most people’s experience. I have saved thousands of words in a special app that caused me to feel something. I collect them like prized heirlooms.
My memory causes me a lot of distress because I constantly notice other people’s inaccuracies (which makes me feel I’m being lied to) or they think I’m creepy for remembering such detail, like I paid way too much attention. I also recall and have traumas reactivated multiple times a day because my brain just recorded so many events so vividly. My pattern recognition just automates comparing everything to everything else– and so I have to feel my old sensory traumas over and over.
My neuroception is intense, and I get very stressed and feel threatened by anyone standing too closely to me or speaking too loudly or moving too quickly. I have almost zero tolerance for sharing physical space with other humans, even if I really like them.
My vestibular system is unresponsive, so my vision and hearing keep me from feeling like I’m floating away. If I close my eyes on an uneven surface, I just fall. I lie down a lot because I’m always dizzy, and bending forward or looking down too much makes me feel like I’m going to fall. It causes so much anxiety that I can only tolerate a few minutes of standing and moving before I panic.
My gross motor is terrible. I have to look at my limbs and will them to move and fall up the stairs all the time. I hate being touched. I feel it so intensely that my skin will burn and feel electrified– not exactly pain but something far worse– for hours. I don’t get hair cuts or manicures or massages.
I don’t perceive time as linear and can’t even understand how other people can.
I smell everything, even illness and the contents of people’s stomachs. It is so overwhelming it causes extreme suffering. Same with my hearing. But, my auditory processing is terrible.
I also have severe auditory and visual processing disorder, and my vestibular system doesn’t work at all. I have a really intense feeling about eating, and it’s not positive at all. I need everything to be liquid or nearly liquid. I would live on curry dishes and ramen noodles that are 75% hot sauce if it were feasible. I wasn’t exactly sure how to characterize it, so I just put “no thanks.”
Because my vestibular system is under-responsive, I drew a spinny line around movement. I get dizzy so much that I, unfortunately, avoid movement.
I love rhythm because it’s mathematical, and I tend to do everything to a rhythm. The contours and cadence of some people’s movements really attracts me and always has, and I think it is one way I’ve always found other autistic people. They might seem clumsy to the world, but their Movements are in sync with me. White noise like a fridge or air conditioner can really annoy me if it has an off-beat rhythm to the sound. My brain cannot stop trying to create a rhythm. I love percussion instruments like bongos and tambourines.
Your Brain Story – A Note of Caution
You can’t know how other people experience things because you’re not in their heads, but if you’re not autistic (or have other neurodivergence), your profile will not look like my or Kate’s example.
Keep the extremes in mind and try to understand yourself relative to experiences that would meet those extremes. Can you recall every word youāve ever read? Are your motor skills so impaired you canāt grip a pencil or take a few steps? Is your pain tolerance so high that you wouldnāt notice third degree burns?
The reason this matters is that this tool is meant to help you understand what it means to experience invisible disability and how to accommodate for those disabilitiesā not appropriate them. Please be sensitive to neurodivergent peopleās sensory profiles if you are neurotypical.
Autistic people do not all have extremely uneven profiles, though many do. Kate and I are probably not “standard” autistic profiles because we have both experienced traumatic brain injury and have other areas of neurodivergence.
Show us your brain! Hashtag #BrainStory and tag @NeuroClastic
Please show us your brain story! Post your brain story on social media and be as creative as you’d like with how to use it to really personalize it to you.
Print these resources and use them as a teacher. Ditch the tired “what did you do this summer” routine and do something neurodiversity-affirming. Use them as a way to talk about how we all experience the world different. Inform your therapy practice and empower your clients with a way to think about and map your sensory lives.
What did doing this activity teach you about yourself or your loved one? How does this inform your/your loved one’s lifestyle, personality, preferences, weaknesses, strengths, skills, talents, and accommodation needs? How can you use this to better accommodate yourself or the autistic people in your life?
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9 Responses
Terra:
Your own case of autism described by you as author is rather scary. What happened to cause you some former or earlier brain injury?
Sorry to learn that you can’t stand the touch of another person and that it burns you like fire. Or smelling the contents of someone else’s recent meal…
Thanks for the continued education.
Best of luck with life. For it remains, āā like it or not. So get along with it now… Sweet Dreams! š
Carbon Bridge
Some of what Terra describes sounds like cerebral palsy. I’ve read a book featuring a character with CP, and this character, who could walk but was severely disabled nonetheless, also had to look at her arm to get it to move. Mind you, the character also stuttered and I can’t tell if Terra does that because I only know her writing, but there is some overlap there, in effects at least. Might not be a bad idea, if it’s at all realistic, for Terra to get that checked out and see if she does also have CP symptoms, or if some of the forms of assistance used by folks with CP might be helpful to her (even if it is just the resources in the form of knowledge and a few affordable backup supplies). I don’t say this to further stigmatization. I say this because this looks like someone who could really use some help and accommodations they don’t have right now, because even if life with disabilities like this sucks, it sucks a lot less when you have accommodations. As is the case with my mom and her current mobility issues, which suck, but they’ve been worse when she didn’t have things that help accommodate that.
I think I do have mild cerebral palsy. The right side of my body works way better than the left.
have TBI probably from aseptic meningitis, or swelling of the meninges. I have had several instances of mass inflammatory reactions in my life. This is why my symptoms may not all be related to autism and why I have struggles and gifts that are not just an autistic experience.
I think adding another category for “food texture” would be a good idea, because for many autistic people, including me, food textures can cause a lot of sensory issues, even with something that has a perfectly good flavor. Texture is a big reason I dislike most fruits and vegetables (with the other being digestive issues that come from eating leaves specifically and not other equally high-fiber foods, the less cooked the leaves the worse the issue), and while there is a specific flavor profile that turns me off to a few other fruits specifically (a kind of “empty sweetness” if you will, that coconut, among other things, has), most of these issues are, indeed, textural. Which is why it’s more likely to be with fruit and veggies, which have wildly varying textures, than with meat, which generally has a similar texture (except organs, that is, and a couple varieties of non-fish seafood).
I’m thinking I could not draw my brain story. I have been writing it though. Seven years after a misdiagnosed brain injury that had left me with impaired hearing, and without sense of taste and smell, it was confirmed by MRI scan. Six months after that, I received healing. I began to recognise smells and enjoy food by taste instead of texture. For three years my brain has navigated the two areas of scar tissue resulting in new boundaries being configured in my thought processes, abilities and behaviours. I have a new outlook, attitude and approach to life. I am a new me. As I have spent time getting to know this new post brain injury me, I have discovered that underneath I am autistic. Currently I am exploring this attribute and find I know the autistic me. I am writing my autistic story, post brain injury. In the process learning a whole new vocabulary. By the way, I am 65 years of age and a retired primary school teacher who thought from childhood she was just odd. Now I write my discoveries, compile them in journals and express my emotions in poems. At times I can speak, but mostly I would be mute.
Can I translate this article into Spanish and publish it on my blog with the respective references to your page?
I wonder if you would be interested in making a slightly more kid-friendly version. I think this would be a wonderful resource for students to start learning about their own neurological differences (if any)!