- Autistic people and our accomplices regularly repeat the mantra, “This world is not made for us.”
- This article walks you through a specific experience in the life of an autistic parent of an autistic child to illustrate how the world is not made for us.
- Enjoyable, fun events we want to participate in can cause distress, trauma, and social exclusion even if they have no obvious catastrophes.
- The circumstances in this specific article can be generalized to therapeutic, educational, social, athletic, professional, and home settings.
- All autistic people are different, so the circumstances in this article may not apply the same way to every autistic person.
Recently, my husband signed our child up for a local group wherein girls learn outdoor skills and engage in community and charitable service. She had only attended one meeting and had loved it. The group leaders are elementary teachers, and there were fewer than ten girls in this particular group.
The second meeting was a regional event and did not go so well. What happened was I watched helplessly while my child:
- tried over and over to adapt to something not designed for her,
- hid and fell behind until she became invisible to her peers,
- mustered a superhuman amount of optimism,
- masked away her autistic nature,
- then had the last flicker of optimism snuffed out when she felt like she had failed at being a good, normal child.
And no one else noticed a thing.
This is long, but it’s far shorter than it needs to be for you to know what an everyday experience is like for an autistic child. Or an autistic adult.
I shortened this as much as I could, but if you really want to know what it’s like to be us, you need to put in a shred of the effort we have to invest to exist a day in your everyday life.
Every person mentioned in this story was a kind, well-intentioned person who has not done the work to prevent my child from having her heart broken in perpetuity. You have to learn to get beyond “loving someone with autism.”
Inclusion requires nuanced knowledge.
When autistics say this world isn’t made for them, here’s what they mean
Autistic people often have profound deficits in executive functioning, which means that they do so much work, internally, to prepare for any new situation before they even arrive. Autistic children and adults need enough information to be able to go into an event mentally and emotionally prepared.
Text-based full PDF of the following slides available by clicking here.
Without enough information, we panic.
Because if we get it wrong, there are always social consequences.
Before the event
The second meeting for the girls’ group was a service event designated to support the local food bank and recipients of Meals on Wheels, a nonprofit that provides prepared food for seniors and disabled people who are homebound and cannot reliably prepare their own meals.
We were supposed to bring items to this event to contribute. Other than a list of shelf-stable foods and toiletries, what we were supposed to bring or how much was unclear— food and gifts for birthday boxes.
There was more information about the sadness of being a disabled shut-in (like me, basically) than about what to actually bring, reminding us that for many of these people, this birthday box was the “only remembrance” they would have in a year.
Most people may need a lot of baiting to be convinced to engage in charity, but autistic people tend to not need such strong persuasion.
In fact, a research study highlighted that autistic people gave publicly and privately to charity, but non-autistic people only gave without expectation of return publicly.
In addition to being vulnerable to over-giving to the extent that our needs go unmet, we are also vulnerable to social consequences if we over-invest— being seen as virtue-signaling or performative. A “goody-two-shoes.”
With no parameters about how much to bring, and a huge list, I did not know what to do. If there were only six or eight girls in her group, and we were spending two hours assembling these boxes, I assumed that people would need to bring a lot.
I spent about $130 on canned beef stew, canned meats and soups, and other items on the list. That was $130 more than I could afford.
When I got there, I did what I always do and sat in the parking lot, imagining myself walking in and observing how other people entered the building.
I have to imagine doing things before I can do them because my task initiation switch is broken. My child was wordlessly doing the same.
Most people were empty-handed. A few carried a single can of food or a small bag with one or two things.
And then there was me, limping in with my fifteen bags of canned food and my rubber knees that bend backwards and my partially-dislocated shoulder (this happens to me a lot).
A bag broke.
Cans rolled in every direction down the slanted parking lot. Beefaroni lodged under the tire of one of the many Teslas in the parking lot.
There were a lot more than six kids here.
The Holiday Vignette: Community service… and crafts
There were probably 150 gradeschool-aged girls in the room and fifty teen and adult volunteers. Most of the parents had dropped off their kids and left. A few stayed.
I have to stay. My child needs an accomplice to survive these things with dignity.
Parents of autistic kids cannot rely on other people to know how to make sure a fun activity is actually fun for their kids— or even prevent it from being traumatic.
The first thing the organizers did was hand out jingle bell necklaces to every child. Neither me nor my child heard anything anyone said after that. There was too much noise no one else seemed to notice.
For me, and for my child, this translates to unrelenting torture, as if 200 people are all speaking and jingling point blank in ours ears. The worst part is not the pain and shrillness of the sound but the exhaustion of the brain trying to figure out where to focus.
Are people telling you that you just won the lottery? That someone is pointing a gun at you? That you’re on fire? That you’re stepping on their foot? You have no idea because every bell jangle is a clanging alarm to your brain with no time to make sense of anything. Everything feels urgent when your brain can’t identify stimuli as non-threatening and filter it out.
I read lips as well as I could. I masked and hoped I heard right. So did my child.
Seven Stations, Seven Transitions, and Human Auditions
Each group would begin at one of seven stations, rotating to the next station after fifteen minutes.
Transitions are hard for autistic people, especially when a person needs extended time to accomplish a task. Our brains tend to need to do a lot of prep before jumping in or we’re likely to make mistakes.
Don’t let yourself sit on your high horse and think, “Well, we all make mistakes.”
Everyone makes mistakes, but not everyone is likely to make so many mistakes that they seem to others to be willfully sabotaging things or are at risk of social exclusion because humans are self-selecting and many avoid or actively harm those they perceive to be the weakest link.
We need to know what’s happening in advance to make the preparations we need to make and to know if we should opt out. I wish I had listened to my gut, but instead, I listened to the “You worry too much” crowd. My “you should worry more” gut said to opt out.
Autistic people need to be mentally rehearsed because we often cannot spontaneously process new things at the same speed as others. Being blindsided by unexpected circumstances will consume so much executive functioning that we won’t have enough left to stay regulated, focused, and communicative in busy spaces.
That’s when meltdowns happen.
And because most people don’t understand meltdowns, they’re likely to make the situation worse by surrounding you, touching you, trying to get a logical and rational answer about what’s wrong and what you need, then punishing you for the next decade for what is essentially like having a seizure wherein you’ve lost control of your overloaded neural circuitry in public.
Most people don’t have to think about these things. I doubt other people, even the organizers, are still recovering from this event two weeks later.
But we are.
Station 1: Cookies
The first station was cookies. Each kid was to go get a plate that had two cookies and a clump of either chocolate or vanilla icing.
What others probably saw:
An overprotective helicopter mom doing too much, enabling her child to be too dependent.
What was actually happening:
My child couldn’t hear because of the bells. She struggles to make decisions quickly when overwhelmed— like anyone with executive functioning disability. She had no idea how to even focus her attention because the bells were like a hundred people signaling “look over here!”
She eventually had a teen volunteer push chocolate toward her. I carried the plate to the table, and the drink, because there was a 96% chance she would have spilled them on the way.
My child is apraxic and has difficulty with intentional motor planning and coordination. She can carry things, but when that much is going on, she will lose track of her awareness of her body and tilt the plate or cup.
Kids spill things all the time, but if you make it to the end of this article, you’ll hopefully be able to see why letting that almost-inevitable spill be a “learning experience” would have been cruel.
The girls were all mostly-finished with decorating and eating their cookies while my child was still trying to ice the first one. She didn’t want to get chocolate on her hands. It’s embarrassing, no one else was covered in chocolate, and no one else needed mom’s help.
So she took her little plastic knife and was trying to ice the cookie with one hand. Every time, the knife acted like a magnet, picking the cookie up. She would try to dislodge the cookie, get chocolate on her fingers, the cookie would fall upside down on the plate, and the mess progressively got worse.
She would wipe her hands and the chocolate just smeared. She was looking at the other girls constantly, seeing if they noticed.
The adults were chatting with each other about things I couldn’t hear because jingle bells turned all sounds into a noise stew.
A transition was coming. People’s movement patterns were shifting. At first my child didn’t want my help, but she looked at me with a face that said, “What now?” I wordlessly grabbed the knife and iced the cookies.
She ate half of one and was left with a full chocolate beard and mustache. People were transitioning. She was not ready to change gears.
I realized that she felt like she failed task one. No one else felt like this was a skills test with social repercussions. It was all pretty effortless to them.
When no one was paying attention, I dipped the napkin in her water and wiped her face. I put her cookies in a corner with the rest of my stuff.
Station 2: Wooden ornaments
The girls were supposed to take markers and color designs on these little wooden disc-shaped ornaments. This is another fine motor task that also requires the ability to conjure images mentally and recreate them. Both of us have motor planning deficits and visual processing disabilities.
What others probably saw:
Helicopter mom isn’t chatting with the other adults and is only paying attention to her own child. Coddled child cannot accomplish basic tasks.
What was actually happening:
The little girls drew neat rainbows, created ombre effects, colored within the lines, and then flipped their ornaments and drew images on the backs. They proudly showed their group leaders, friends, and moms their creations.
My child tried to draw a smiley face, two lines for eyes, and a U for a mouth. That didn’t turn out well. Other kids had drawn a Christmas tree, so my child tried that next. But she can’t imagine shapes and then draw them. She made a few zig-zags along the perimeter. Then tried again. And again. The more she tried to recover the tree, the more chaotic it became.
I tried to be an accomplice. “Oh, cool! You did a close-up of a pine tree branch!”
She couldn’t hear me, couldn’t pull words from the tinkling morass of bells assaulting her focus. She hunched over her ornament and was discreetly covering it with her hand.
She noticed another girl with a snowman and tried that on the backside. When that didn’t work out, she did what any adult would do and switched to words, her strong suit.
She felt shame.
To her, this was an audition she was failing. She was auditioning for the role of normal little girl.
Station 3: Cards
This station was coloring cards for the Poor and the Disabled.
As a Poor Disabled person, there’s this existential awareness that we’re trying to be the ableds in the room so they don’t kick us out and host events like this to serve us.
My six-year-old was learning lessons others in the room weren’t learning from nice people who had no idea what messages they were sending.
What others probably saw:
Helicopter mom has trained her child to be prompt-dependent and conditioned her into learned helplessness.
What was actually happening:
The volunteers at the stations were mostly teenagers. One asked my daughter, “Flowers or snowmen?”
My daughter didn’t hear and had no idea what was happening. I can’t tell them she’s deaf because she’s not. I’m not either, but neither of us can understand a word anyone is saying. I can’t teach people about auditory processing disorder everywhere we go.
“Flowers or snowmen?”
My child finally said, “snowmen.” The woman handed her a black and white card with an intricate winter scene with smiling, well-dressed snowmen and trees. This was a coloring activity.
I watched the color drain from my child’s face.
This was another fine motor task. She was trying to prepare herself for more failed human auditions and more unfinished tasks she couldn’t get her apraxic body to complete. I interjected and asked for flowers, instead. For those, she just had to glue two paper flowers onto a card.
I had to give my child directions right by her ear because she couldn’t understand anything being said to her.
Her relief at not having to color was visceral. Anyone who thinks we can’t empathize or understand abstract social dynamics or unspoken communication is… wrong.
No one could even see all the subtle communicating we were doing without the luxury of words. They didn’t even think about our need to communicate and wouldn’t have to know our language.
Station 4: Spiral snowmen
At every station, my child was not finished by the time other kids were moving on, and she had no idea what was happening because she couldn’t hear.
As a result, she always had to take the last seat at the far end of the table where she was even less able to hear.
She couldn’t even see the mouths of the instructors because they weren’t facing her.
She was the one sitting there with no idea what to do while her friends were already working together and half way done.
No one was mean to her. No one excluded her intentionally. She just floundered unseen from the literal margins while her peers worked together.
This table had the girls cutting a spiral out of a piece of card stock paper that would become the body of a snowman ornament.
My child smiled and sat up, her optimism not yet killed. She told the volunteer, “Oh, don’t worry! I’m excellent with scissors!”
There were only right-handed scissors.
Like many autistic and apraxic kids, my child is left-handed. She already has a coordination disability, so that made this even worse. These were the child safety scissors with a very fat hole on the side for fingers and very small hole on the other side, making them nearly impossible to use upside-down.
“Do you have left-handed scissors?” I asked. The girl looked at me like I asked for steak at McDonald’s. “No. Just turn them upside down.”
“Don’t worry! I can use them upside-down!” my child assured her. She jammed as many fingers as she could into the thumb hole and made a clumsy first cut, cutting deep into the spiral.
“No! No! No! Not like that! Don’t mess up again. Be more careful. We don’t have extras.” The girl pulled the paper out of my child’s hand and gave her another.
I watched my child’s light go out at that point. I kept quiet because calling attention to any of this would have made things worse, but my child just broke silently.
I cut the spiral out myself. She was done trying.
Station 5: Birthday boxes for shut-ins
I don’t understand why “shut-ins” need toiletries, but the next station was assembling birthday boxes for seniors and people with disabilities.
My child was given a shoe-box, and I have no idea what the directions were. I couldn’t hear. It seemed self-evident enough that we should go down the line and put one thing from each pile in a box.
There were razors, soap bars, body wash, tooth paste, floss, shampoo, and conditioner. Some products were single-use samples, some were large economy-sized jugs. Some were obviously gendered, like pink razors or athlete-marketed body wash for men.
It took two minutes to do the thing I spent the week preparing her to do– the service part that they opened the event by telling everyone how they were “changing lives” with this “very important” work.
After putting the box together, my child looked up at me with a plea in her eyes. The other kids had no awareness of her presence because she was perpetually behind. She has been marginalized in a literal way, kept in the margins.
I asked her if she wanted to do the last two stations or to head home. “Let’s go,” she said.
We said our goodbyes to her group leaders and headed out.
How this activity might have looked if it were designed for Autistic kids and their parents
Every single person at this event was nice, kind, and putting in effort. It was totally appropriate for most children.
It was not appropriate for most autistic or otherwise neurodivergent children.
Had this been designed for autistic people, it would have looked different.
Very Clear Expectations in Advance
There would not be a big list of items to bring with an emotional appeal for people to invest an ambiguous amount of money.
Instead, there would be a suggested range (maybe between $5-25 worth of items) with clear guidance to only donate if it is financially viable and the option to donate more if people were able.
NeuroClastic, as a nonprofit, does not typically fundraise or pressure people for donations for this reason.
As soon as the bells were introduced, anyone with any kind of auditory processing or hearing disability immediately lost the ability to fully participate and enjoy the activity. A different fun token would have been more appropriate.
Or, at least the bells could have been given out at the end.
No Cookie Station
I realize that sweets are a staple treat, but dietary restrictions common among disabled people make gluten, high sugar content, eggs, and red food coloring (in the juice and sprinkles) a poor choice of snack.
Autistic people would likely have encouraged people to bring a small snack or would have provided an assortment of options.
Fewer Timed Transitions
Autistic people are not wired to do a totally different activity every fifteen minutes.
And every activity should not be a test of motor planning skills. I realize these are easy activities for most kids, but almost every kid’s event we ever attend is a series of motor skills activities. My child has lots of strengths that she never gets to exercise because other kids would struggle in those areas.
She deserves a chance to excel at times, too. Not every activity has to be for every kid, but at least some should not be motor planning tests.
Instead, a few thoughtful activities with loose time constraints would center around the specific purpose of engaging in service. Craft stations could be more fluid with the option to make a thoughtful gift to donate and one to keep.
More thoughtful service and education
I spent a lot of time before this event talking to my child about who the recipients of gifts like this might be and why caring for others is important. We have many disabled people and seniors among our family and friends. Her great grandmother is 94. Her grandfather is paraplegic.
Disability is normal in our world.
But all the children at this event learned about seniors and disabled people is that it’s appropriate to give them a box full of hygiene products for their birthdays. They learned nothing about their lives or circumstances that humanized them.
What is the implication? Without non-disabled people, we won’t have what we need to brush our teeth and take a shower? That disabled people’s “worlds are changed” by getting a box of bath products that may not even be useable to them?
Definitely, there was a tragic lack of awareness and empathy for disabled and elder people. That same distance from the reality of being disabled impacts my child.
Instead of six crafts that were Christmas-themed, a more considerate plan could have been to create a single gift that could have contributed a nice gift to the birthday boxes.
Volunteers would be prepared to look for signs of struggle and appropriately respond to them by accommodating for disability.
Not every activity can be optimized to the strengths of every child, but we as adults charged with caring for children need to set a tone that gives children the chance to witness adults being intentionally inclusive so that children internalize the values that everyone is different and everyone can be accommodated and experience belonging.
Being an Accomplice
On the ride home, I asked my child if she wanted to go to the next group activity. She simply said, “I do not.” I’ll give it some time and only propose the small group outings in the future. It will be up to her to try again, and up to me to do better about communicating accommodation needs.
Her group leaders are great, genuinely. As teachers, they knew a lot about autitic kids. They just didn’t know what it’s like to be autistic because they’re not connected to the community.
I used to be an autistic teacher who really knew nothing about autism except how to see it as so separate from myself that I didn’t even realize the obvious fact that I was autistic.
Kids like mine and adults like me need accomplices who can predict our needs and meet us where we are. They can’t do that without listening and paying attention.
This activity was undoubtedly fun to almost every child.
But this activity hurt my child. It didn’t just disappoint her. It was harmful. It made her feel subhuman.
Naturally, and with no malice, everyone lost track of her until she was invisible to them. In the first meeting, she had a blast with the other girls, and they loved her.
She didn’t have to be pushed into the margins until she was invisible or seemed a burden. She didn’t need to be an “other.”
The solution is more people taking the time to understand the nuances of social dynamics and autistic ways of being and then being an accomplice to autistics.
Love is the easy part that many good people are willing to invest, but we need them to learn with nuanced understanding if they want us to be a part of the world they created without our input.
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