
This season of Survivor was close to my heart.
This season of Survivor was close to my heart.
Here’s an update, on How it Feels to Me, the picture book about neurodiversity I’m co-creating with illustrator Gracie Klumpp.
I couldn’t be more excited to share a peek our progress!
Before finalizing color palettes and fonts we decided to order an early proof to see how everything looks on paper. Something I’ve learned about self publishing is that early proofs can really help save time by identifying problems early on before they multiply.
Gracie put together a few spreads to test colors, fonts, and print quality. (Pinch & zoom to really get a good look on mobile.)
Lucky we did because we’ve completely changed our printer! (But more about that later.)
Here’s a really fun spread we’re experimenting with.
This is a visualization of sensory modulation that invites the reader to turn the book upside down to see how the levels change.
The next spread continues on from the first page, “All brains are different.”
“Just like all bodies are different.
We can see some differences, like if someone is tall or has curly hair, but we can’t see people’s brains.”
Here’s one more peek at some of the character work Gracie has been doing. I love seeing the concepts I’ve written about come to life!
These aren’t even finalized illustrations, but I’m already in love.
Two days before my birthday I opened a box to find this beauty inside…
Holding the proof in my hands was absolutely magical. It’s real. We are making this book.
And (unfortunately) it’s more needed than ever.*
Imagine my surprise when I opened the cover found someone else’s book inside.
The first 2/3 of the proof were pages from a completely different picture book. 🤯
I immediately texted Gracie to check the second proof. It had a completely different (but equally egregious) error. That edition had a huge white bar down the center.
The way this printer works these books were considered “final” and not “proofs.” †
Needless to say we are investigating different printers.
We’re currently exploring 48 Hour Books.
There are some pros and cons.
The quality will be excellent. We’re very happy with the sample book they provided.
But, the books are going to cost more than we budgeted. We haven’t finalized how much this will be yet. 48 Hour Books just invested in new printers and updated prices aren’t out yet. But the difference is considerable.
We’ll also be required to purchase a full print run (with a minimum of 100 books) rather than print on demand. This is the only way for the price of each book to come even close to our original budget.
There’s also the small matter that each proof will now be $40 instead of the budgeted $20. But this price difference ensures books (and proofs) are made with care.
I’m prepared (and able) to cover the difference in cost, but if you’d like to pitch in you can send donations via Venmo. I’ll share more concrete information about the pricing differences once we have that.
Here’s a video from our crowdfunding campaign sharing the inspiration behind the book and our goals for self publishing.
If you haven’t preordered a copy yet you can preorder here.
But we’re confident it will be worth the wait.
While we wait for 48 Hour Books to update their printers Gracie will continue refining the illustrations. Allowing me bandwidth to focus on proofs for Entwined & Ember (this is a big year for me!)
THANK YOU SO MUCH, each and every one of you, for all the ways you’ve supported this project!
We appreciate you.
P.S. If you’d like to support the project and don’t need a copy of the book you can also choose to donate a copy which will go to a school, library, or a neurodivergent family in financial hardship.**
* The US Government has recently categorized autism and ADHD as “epidemics” and is spreading harmful misinformation. I addressed it briefly in my new post titled, What is Autism?
† The printer was Ingram Spark, for the curious. We’d already dismissed Amazon for the hardcover edition. (Although we plan to release a paperback through Amazon later on to make the book as easy to find and accessible as possible.)
** If you donate a book we are happy to find the book a home or to send it to the school or library of your choice.
Therapeutic weeding. The front bed is overrun with witch grass because I wasn’t well enough to garden last year, but reclaiming it one patch at a time. Excited about our first sea holly – it’s a variety called Hobbit.
I really prefer British style fences, but with the wildflowers blooming I am coming around to ours.
Have I mentioned I set up a desk in our living room? I’ve been using it since January or February. It was especially nice when the severe winter weather meant I couldn’t use the studio.
New doctor new bloodwork. I’ll be writing about chronic illness soon so I thought I’d take a photo while I waited for the nurse.
We found this beauty when we were weeding the mulch under the jungle gym. A fascinating science project to see how an acorn sprouts into a mighty oak.
Hi! I’m Sarah. A late diagnosed autistic adult. I’m an author, artist, home educator, and former academic. You can learn more about me and my work here. This post is my introduction to autism and neurodivergence. It is based on self directed research and my own lived experience.
The word neurodivergence is made of two parts. Neuro meaning brain. And divergence meaning to differ. Neurodivergence means that your brain processes the world differently.
Every human is unique, but most brains have certain things in common.
Neurodivergent folks experience the world differently. Our brains are processing information in different ways. There are lots of types of neurodivergence including dyslexia, dyscalculia, synesthesia, OCD, dyspraxia, etc. Each with specific ways the brain differs from most people.
My lived experience is centered on autism and sensory processing differences so I’m going to focus on these. But there is overlap with other types of neurodivergence (particularly ADHD.)*
The most important thing to understand about autism (and more broadly neurodivergence) is that every person is unique.
There isn’t one way to be autistic. There is a spectrum of experience.
This isn’t a rainbow from “less autistic” to “more autistic”.
In my experience it is more like a color wheel that’s constantly in motion.
The reason I describe the autism spectrum as in motion or flux is that my experience varies wildly based on external and internal factors (environment, clothing, health, access to supports, hunger, anxiety, etc.) This means my capacity varies from day to day and moment to moment.
I also find that my autistic traits are almost always rooted in sensory differences. So this a helpful place to start. I made this video to share my experience of overstimulation. (There’s also a shorter 30 second version here.)
That’s how it feels (for me) to experience sensory overload or overstimulation. The internal sensation can range from something like overwhelm and numbness to physical pain depending on the trigger. Remember this varies from person to person.
Why might an autistic person experience “normal” sensory input as pain or sensory overload? Because our brains process information differently.
Take a look at this brain scan.
The scan on the left is an autistic brain processing language.
The scan on the right is someone without autism.
I love this image because you can see how much more information an autistic person is processing at any given moment. The non autistic brain is using a process called sensory modulation to focus on the speaker’s voice. The autistic brain continues taking in lots of other information simultaneously.
I believe understanding sensory modulation is essential for properly empathizing with and supporting autistic individuals of all ages.
I’m working with an autistic illustrator to create a children’s picture book about this. You can support the project by preordering or donating a copy here.
You’ll notice I don’t call these symptoms. Being autistic is NOT a disease or an epidemic. It is simply a different way of processing the world. There are strengths and challenges that come with being autistic. Just as there are strengths and challenges that come with any neurotype.**
Autistic traits are rooted in experiencing the world differently. They are not deficits. They can be strengths.
Let’s start with autistic strengths because so often we do the opposite. We rarely seek diagnosis because of our strengths. Therefore many autistic people who have the proper support structures in their lives do not even realize they are autistic.
When looking at any list, remember the spectrum, no autistic individual has all autistic traits. Some are even contradictory. How many traits you need for a diagnosis is not the point here, but if you see yourself reflected in these lists you may consider identifying as neurodivergent.
Source: AUTISM HANDBOOK BY Andi Putt, M.S., CCC-SLP
Having a hyper connected brain means we are often great at recognizing patterns and making connections that others do not. This gives us a unique perspective and can enable us to make art, solve problems, and contribute in meaningful ways.
My autism is central to my creative practice making art and writing books. I made the work below to express the overstimulation caused by a single clothing tag. It’s been in multiple exhibits across the country including a gallery in New York City.
Having strengths does not negate our challenges or our need for supports.
Here are some of the ways autism can present (keeping in mind every person is unique and no one person has all of these traits.) Most of these come down to sensory modulation, but can externalize in different ways.
Remember the rainbow brain? That scan is happening when an autistic person is listening to spoken language. Most brains modulate or mute sensations it deems necessary to help you focus.
This means if you’re in a noisy restaurant non autistic brains “turn down” the volume on other conversations, cutlery being sorted, appliances in the kitchen, chewing noises, and music playing. This happens automatically, but autistic brains do not always have the ability to “tune it out” and focus on a single sound.
This can make listening, conversation, and learning spoken language challenging. We also process language itself in a completely different way – learning to speak in chunks rather than words. I’ve written a bit about that here in the context of learning a second language.
Some autistic people are nonspeaking and use devices like an AAC tablet to speak for them. This is not a sign of lack of intelligence, but a difference in processing language. Others may use sign language, communication cards, or gestures. We need to respect all forms of communication equally and not favor spoken language.
Supports for language also include closed captions on video content, more time to process spoken language, or text based communication (email or text versus phone calls.)
Autistic people often have social differences. We usually communicate quite well with each other, but can struggle to socialize with neurotypicals. This too, may come down to sensory modulation. Being assaulted with sensory input we have to work hard to consciously process social situations that non autistics navigate intuitively. This is not a flaw, but a difference.
The problem comes when we are judged against a neurotypical standard.
For example, an autistic person may struggle to make eye contact because they are trying to read your lips to understand what you are saying. Or they may find eye contact physically painful because it is so intimate and emotionally intense. This is not a flaw, but is often perceived as a “lack of confidence” in a culture that values eye contact. Other autistics may have not trouble with eye contact at all. Or only when dysregualted.
Autistic people also tend to be direct and honest. We can struggle with layers of subtext and take people at their word while missing the hidden meaning.
Never forcing eye contact.
Understanding autistic culture has different social norms. For example “infodumping” or sharing deeply about your passions, is a way that autistic people connect, but is often seen as a social flaw by neurotypicals.
Clear, direct language.
Breaking down social expectations in a transparent way.
This is a complex issue, but speaking for myself, I often manage hypersensitivity and social differences by careful planning and mental preparation.
Small changes in plans can result in big instances of dysregulation (intense emotions that can present as meltdowns or shutdowns). A meltdown is an intense outburst of emotions (crying, yelling, shaking) and a shutdown is the opposite (internalizing and struggling to communicate.) Both are signs that your nervous system has been asked to take on more than it can safely process.
With children this can be misunderstood as willful disobedience when they are struggling to process changes in plan or transitioning between activities.
Autistic people are more likely to become dysregulated if we are overstimulated which is why understanding sensory supports is key. Another layer to this is gestalt thinking and episodic memory.
Carefully communicating transitions and changes.
Allowing more time for mental processing.
Having tools for self regulation if dysregulation occurs (fidgets, heavy blanket, etc.)
Autism is complex and it’s impossible to cover all of the possible differences in a single blog post. Here are more traits that some autistic people have.
We also have various ways to self regulate our hypersensitive nervous systems.
If you’d like to learn more about sensory processing I created a whole presentation about neurodivergence that digs into the 8 senses (that’s not a typo!) here.
Something that can complicate a full understanding of autism is masking. An autistic person who is able to mask can sometimes push through situations that cause them pain or dysregulation. People who mask often experience a delayed reaction and may meltdown or shutdown when they are next in a safe place.
High masking autistics often study and imitate expected social behaviors, but this takes a toll and uses a lot of focus and energy that could be used for other things. The ability to mask varies from person to person, but is a serious danger to all autistic people. Masking can pushing your brain and body further than it has capacity to handle. Over time repeated masking without adequate support and recovery can cause serious consequences to mental and physical health.
Before becoming a parent I was able to mask in most situations. I could push through sensory pain and dysregulation because I had adequate time and space to reset afterwards. Now that I have less time I have to be careful to honor my autistic limits and use necessary supports to prevent a serious mental health collapse.
I believe the assessment process as it stands is incomplete because it is focused on external behaviors and not the internal experience of the person being assessed. This is because the autism evaluation was created by neurotypicals based on autistic traits they consider undesirable.
I went through an autism diagnosis as an adult, but I’m not sure I’d do the same if presented with the option today. Identifying as autistic and neurodivergent was life changing. But I had to learn to self advocate for my needs. The diagnosis paper itself did nothing for me.
For kids the issue is more complex as an official diagnosis is often needed to access certain supports (educational accommodations, etc.)
Whether or not you choose to seek a formal diagnosis, remember that your needs are valid. It’s okay to share how you feel and ask for the supports you need. The real power comes in reframing neurodivergent traits as differences and not flaws. And learning to self advocate.
If you have an autistic or neurodivergent person in your life the best support you can give is to listen and believe them. The reaction that you see is based on their real internal experience and is not disproportionate or oversized for what they are feeling inside.
Parents or partners of autistic people should always ask how best to offer support because everyone is different.
Look for ways to minimize sensory pain and overstimulation.
Protect space needed to reset and self regulate (as listed above.)
Keep listening. And consider whether you may be a highly masking neurodivergent person. We can sometimes be the hardest on each other. Just because you can endure or mask through something does not mean every neurodivergent person can. not everyone has the same capacity to mask.
Over the past few years I’ve been collecting neurodiversity affirming resources to learn about autism, sensory processing, and other forms of neurodivergence.
Click here for my favorite podcasts, videos, books, and more.
* I have been professionally diagnosed with autism, but also have traits of ADHD such as time blindness and difficulties with object constancy. Having knowledge of these traits and functional coping strategies I have no interest in pursuing an ADHD diagnosis at this time.
† Illustration by @autistic_sketches on Instagram
‡ Artwork via Felipe Pantone on Instagram
§ Brain Scan images via Schneider Lab
** Neurotype is a term used to describe your brain’s processing style: autistic, ADHD, OCD, etc. If you are not neurodivergent your neurotype is neurotypical. Being neurotypical just means that your brain is processing the world like most others. This means the dominant culture has been made to support the way your brain processes the world around you. You are surrounded by supports for your neurotype every single day.
† † Printable Cards from Sensory Diet Workbook by Harkla (Affiliate Link)
This is the first year I’ve been well enough to really spend time weeding the wildflower area of our garden. Years past I’ve let the seeds go truly wild and only pulled a few “mean dandelions” (you know, the spiky ones) and weeds I suspected might be poisonous. This year I’m enjoying sitting among the bachelor buttons and pulling up plants that are less desirable so we have fewer weedy seedlings competing with wildflowers next year.
“Hey, I work with college students often. Do you know what brings their attention back to the surface after years of Zoom classes, Generative AI cheating, and smart phone usage?
Zines. Freaking zines. You put a zine in an undergraduate’s hands and say “Someone like you made this. You could make this. All you need is some found images, paper, scissors/glue, and your own imagination. No chatgpt necessary.”
They light up, every single time, without fail. They start to recognize how little Generative AI serves them in the long run. They’ve called zines “Anti-AI” to my face and gleefully showed me their first zines with thought, intention, and inventiveness.
Critical thinking isn’t dead in the land of zines. It’s thriving. Academia has to pivot, as much as I loathe that corporate term.”
Abigail Schleifer via Substack Notes
See also: What Are Zines? by Abigail Schleifer