Aug 21, 2025
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JUST KEEP STIMMING
art by @catnippackets
We’re Listening
Content note: this is a very emotional post and talks about some distressing things.
I’m in several online autism-centered parent groups. This is mainly so I can offer support and also learn – as I like learning about resources around to help advise families and friends.
Want to know a secret? I hate it.
You know how sometimes people warn you to not read the comments? It’s like that, but worse.
I understand that it’s venting, letting out some sort of pent-up rage into the void.
But – it’s very painful.
I see the posts about young children, and their parents calling them evil.
My blood pressure skyrockets and my chest hurts every time I have to read flyers shared that say “Talk About Curing Autism” or a fundraiser for the dreaded Autism Speaks. I worry as I read about how they use unsafe practices to “cure” the autism. The fad diets, the bleach and chelation, the intensive “quiet hands” ABA torture. A 40 hour work week is rough on most adults; why do it to a child?
I watch as an entire comment thread agrees together that autistic adults belong in group homes, that autistic children will never amount to anything, that autistic children should not be allowed to have an organ donation or that their deaths would “be a mercy.” I see people say that their child’s distress is “such an embarrassment” or that their child would be better off institutionalized and never allowed a voice.
I swallow my stress as I read post after post about how someone “can’t deal with this child anymore” and how “they just want to give them away.” As someone who grew up as a ward of the court, these comments sting too hard for me.
I cry because someone literally says they hate autism, and would rather have a dead child. Straight up posting “I would rather have a dead kid than this” and “I wish my kid was dead.”
Considering I just lost my autistic baby brother – don’t even try to pull that one on me.
Don’t you even dare.
__
I try to keep myself composed, because if I told people how I felt, I would definitely be banned. And even when I speak up politely, I often get shut down.
“You’re not really autistic.”
“You’re too high functioning.”
“You don’t know what it’s like!”
A few fun facts:
I am autistic.
I am not a functioning label.
I know exactly what it’s like, both inside and out.
__
I get told “you’ve never had a toy thrown at your head.”
I remember that I was given brain injury that has wreaked havoc on my nervous system and cognition. I have had many things thrown at my head, bitten, scratched, punched, and worse.
And yet, the worst abuse I have ever received was from neurotypicals. I have no anger nor bitterness toward a child who is struggling to comprehend and tame strong emotions.
I am lectured with “you don’t know what it’s like to worry about your child’s future.”
I remember crying alone hysterically the day my autistic brother went to preschool, because I was scared he would be bullied like I was.
I didn’t fear for me, because I figured I would die before I grew up anyway (my mental health was not the best). Now that I’ve somehow survived, I am terrified.
I’m not sure what happens next. I don’t know where I will be living this time next year. I don’t know how I’m going to keep afloat. And you’ll find that most of us autistics are terrified, too.
__
I listen and read every comment.
“Autism is a disease. Autism is undignified. Autism is disgusting. We need to fight and destroy autism.”
I replace each instance of Autism with a name, whether it be my own or my loved ones. I would type it out, but I do not want to.
“My child is a disease. My child is undignified. My child is disgusting. We need to fight and destroy my child.”
How cruel does that sound?
I’m so used to being called worthless and broken. Our community hears this constantly in professional and parent circles.
Even in the conference I spoke at in April, I broke down crying as I listened to the more high-profile guests.
To them, we are a burden. We are missing pieces of ourselves and are too broken. We are deficits in society. Byproducts of genetic disease or environmental toxins, things I overheard constantly during the conference. Books on the counter about the “epidemic” and “problem children.”
All around me were puzzle pieces, anger, people all shouting about the horrible autism epidemic.
My meltdown I had when I got home had nothing to do with public speaking.
It had everything to do with the fact that I felt unwanted and unwelcome at an event that was all about my shared neurology. My friends, my brothers, my loved ones, my sweet fiancé – we are told so much that we are broken. We are told we have no empathy or emotion. We are not wanted, not desired, not needed.
And people wonder why autistics have higher rates of trauma and mental illness?
_
I know autism is hard.
I am in that odd and awkward perspective, where I am the autistic person, love an autistic child, work with autistic people, and am trying to enter the professional word of special education.
I am not a stranger to the “negatives” of autism – not even the slightest. Yet, I don’t see a child with “deficits” or as a “side effect.”
I see a child who needs supports, love, acceptance, and encouragement. All people, regardless of ability, deserve kindness and to be respected as human beings.
But I can’t say that in these groups – and that’s the real shameful disgrace.
Autistic children, teens, adults – all of us are listening.
But are you listening to us?
-Courtney Johnson, @justkeepstimming
Content note: this is a very emotional post and talks about some distressing things. I’m in several online autism-centered parent groups. T
The Sloth
One of my favorite things is stuffed animals and plushies. Squishmallows, teddy bears, and even pillow pets – if it’s soft and cuddly, I will love it.
Anytime we go to the store, I’m immediately drawn to the soft texture of any stuffed animal I see – which gives me a sense of calm in the middle of a chaotic environment. The feeling of the fibers twirled between my fingers, the way the softness seems to soothe my soul – it’s such a sensory comfort.
[Person with blonde hair and glasses is wearing a mask with blue flowers and a black jacket, and sitting in a car. They’re hugging a very large stuffed toy sloth, who has a red ribbon on him.]
I do the same with cozy blankets or pillows I see as well. The textures feel peaceful – like the physical embodiment of the meditation music I listen to every day when my brain feels stressed.
People don’t always understand the importance that stimming and sensory systems play a role in our mental health and joy, but it really does.
Sometimes we’re seen as childish for loving the things that we do, or for moving the way our bodies need us to. It’s not “age appropriate” or will somehow hinder our development.
I don’t think that’s true.
_
Our interests become comforts, springboards, or passions. Our movements regulate, express, and sometimes are not something our brains can control.
I navigate the world through my senses, feeling everything at an intensity that many people do not.
There is no shame in needing comfort. If a special interest or a sensory tool is what brings you peace in a troubled time, it’s okay to love what brings you joy.
Happiness has no age limit.
-Courtney Johnson, @justkeepstimming
One of my favorite things is stuffed animals and plushies. Squishmallows, teddy bears, and even pillow pets – if it’s soft and cuddly, I wil
Flower Communion
Earlier this month, my caregiver and I went to a local friend’s Unitarian Universalist church – where we were able to participate in their yearly tradition of the flower communion. During the ceremony, everyone brings a flower and places it in a basket or vase. After a small reflection, everyone returns to receive a flower different from what they placed. This tradition was started by Norbert Čapek in 1923.
A pink peony flower is being held. You can see lines from a disability parking spot in the background.
As I held my flower, I studied it with my senses. I am autistic after all, and my sensory system helps me take in each moment. The fragrance, softness of the flower itself, the strength of the stem – it gave me great joy.
After the service, it amused me to see all the petals that had fluttered to the ground. It was a gentle reminder to enjoy being in the moment. Flowers aren’t around forever, but the joy they give us while they’re here is wonderful. Čapek himself understood this well. Arrested and sent to a concentration camp due to his writings and listening to “outside” news during WWII, he took solace in his ideals and in peace. His writings were interwoven throughout the service. For myself, the most impactful refrain was this: “My life was worth living.”
And indeed it was.
_
Growing up, I had a lot of trauma connected to church and religion. Because of that, I was a bit scared to attend. When I went in though, I immediately felt at ease. Turns out Unitarian Universalism is very different from any “church” I’ve ever experienced before – and far more affirming. The emphasis on acceptance and value of all life (regardless of background, race, gender, sexuality, etc) was incredibly soothing.
Watching the pure celebration of life and its cycles is something wonderful.
Autism and Epilepsy
Here’s your friendly reminder that autism and seizures sometimes go hand in hand. Not always, but sometimes it does.
Had an ambulatory EEG this past week, and I was very annoyed at it. I thought it wouldn’t show anything, and it wasn’t worth the sensory nightmare for three days. Not really something I was excited about, but I pushed through it – trying to figure out ways to keep my sensory system regulated. My weighted blanket was a lifesaver for this one.
I haven’t been feeling very well, but shrugged it off because I have things to do. I figured since I was taking my seizure medication, I should be good. Right?
And then yesterday, we got a call from the neurology office. Turns out it was abnormal – and I also had a 20 minute episode. They want me to come in to see the doctor, so they can discuss all of the results with me.
I guess maybe that explains why I’ve been so disoriented and tired lately. I’ve been a lot more overwhelmed and dysregulated – and it shows.
_
Sometimes our “behaviors” are actually because of medical reasons. It can be hard to explain how we’re feeling, and it can also be hard to realize that something is wrong too. Professionals don’t always realize this, and push families to “fix” the behaviors – instead of taking the time to rule out health issues.
A kid hitting their head? Could be migraines, post-seizure, an ear infection – or maybe even flashbacks from trauma.
Toileting troubles or accidents? Urinary tract infections, incontinence medical conditions, and GI problems can all play a role in it. Not to mention interoception!
Not paying attention or daydreaming? Sometimes that’s actually an ‘absence’ seizure.
And when it comes to families trying their best to figure out what’s happening? The system is complicated.
It can be hard finding specialists who understand autism, getting insurance to cover it, and doctors that take your concerns seriously. Parents have to deal with gaslighting, accusations of overreacting, and more.
And when you’re autistic yourself?
They take you even less seriously, especially when we have trouble explaining how we feel and what’s wrong. We’re seen as “unreliable narrators” or incompetent of understanding our own bodies and brains.
The medical field definitely has some work to do.
-Courtney Johnson, @justkeepstimming
Here’s your friendly reminder that autism and seizures sometimes go hand in hand. Not always, but sometimes it does. Person with blonde hair
Kids
The weather was lovely and sunny the other day, which meant picnic in the park! My caregiver brought some chalk and bubbles with us – and a lot of the children there (and parents!) decided they wanted to join in.
None of the kids were bothered by me using AAC, or even my wheelchair. In fact, they were fascinated with my assistive devices.
When I go out in public, I never know how people are going to react to my AAC device or my disabilities in general. Often, there are stares – some out of curiosity, others out of pity or annoyance. Sometimes people whisper and point, as if I somehow don’t notice.
Today, that wasn’t the case.
_
I had children come up to me and ask if my “computer” can say the word dinosaur, and ask for the computer to tell them my name. I had kids come up to me and show drawings they had made for me.
Instead of wondering what was wrong with me, they were more interested in just being in the moment – enjoying a simple sunny day at the park.
It didn’t matter to them that I didn’t speak. Instead, they were more excited about some of the tricks I did in my wheelchair, and beamed with pride when I complimented their chalk art.
_
The part that stuck with me the most was something a little girl said at the end of the day. As I typed to say goodbye, she stopped her mom who was walking away – and said “wait, she’s typing something!”
This is something that I can’t even seem to get some professionals to grasp. The concept of waiting for me to communicate? They find it burdensome. They want to rush the interaction, moving off before I’ve finished typing or simply ignoring what I say.
_
If young children can grasp the idea of inclusion and acceptance, why can’t the adults?
It makes you wonder how disability becomes stigmatized. Where does that radical acceptance go?
And how do the adults get it back?
-Courtney Johnson, @justkeepstimming
The weather was lovely and sunny the other day, which meant picnic in the park! My caregiver brought some chalk and bubbles with us – and a
AAC and Self-Determination: Autonomy and Safety in Home/Community-based Services
[Note: this post and presentation both mention abuse and violence against people with disabilities.] Recently, I had the opportunity to pres