|[Black-and-white photo of a crowd watching a 1962 nuclear bomb test in Nevada. |
Source: Wikimedia Commons.]
Shannon Rosa and Autistic Science Person
If you are a parent or caregiver for an autistic person—a child, or an adult—we beg you to consider our Autism Checklist of Doom. We’ve put this list together to help those who aren’t autistic themselves (or whose autistic traits differ from those of their child/charge) to understand what may upset an autistic person, and cause distress. We hope that by highlighting issues that may not be obvious to a bystander, you can help the autistic people in your life thrive, as much as possible.
Issues in this checklist may upset autistic people to the point of self-injury or aggression, yet parents or caregivers might be told such behavior is “just autism,” or that the autistic person needs behavioral conditioning therapy. Sometimes the autistic people in these situations even get restrained, or given electric shocks. But if the underlying issue is never addressed, then the autistic person is not only still upset, but is being punished, or having rewards taken away, for being in distress. That is an unfair and horrible way to live.
Please also know that even if an autistic person goes along with some of the issues in this list, that doesn’t mean those things aren’t a problem for them. Too many autistic people learn—often quite early in life—that they have no choice other than to submit to discomforts, and also people in their lives may not even register or believe that their distress is real. This means autistic people may seem excited about things that are less uncomfortable/painful to them, which is not the same as enjoying or even neutrally tolerating those things.
This checklist is for all autistic people, whether they can speak or not, and whether they have intellectual disability or not. That doesn’t mean every item will be appropriate for every autistic person; you can look through it and see which things might apply. The list is also not meant to be comprehensive; we will probably add more items in the future—and welcome feedback—but we had to stop somewhere.
Autism Checklist of Doom: Common issues that cause autistic distress, and might be ignored, "treated,” and/or cause a meltdown.
"It's actually quite natural to behave and act as we behave. And those are real and natural ways of being human in the world." Dr. Heather Brown, at the UC Davis MIND Institute 2020 Neurodiversity Summit
- You treat meltdowns, and their triggers, as though they are tantrums and voluntary, when they are in reality involuntary, and in many cases can be avoided.
- You treat tics or co-occurring Tourette's traits as autistic "behaviors" that can be conditioned away, instead of trying to understand why they happen.
- They have undiagnosed fine and/or gross motor processing difficulties, and you press them on something that is physically difficult for them—like putting on jackets, tying shoes, or brushing teeth—instead of providing supports or adaptations like helping them dress, getting them slip-on or velcro shoes, or using electric toothbrushes (or helping them brush their teeth).
- You interrupt them when they are focused, even if/when you know that switching tasks, transitions, and breaking focus is really hard for them.
- You do not recognize when they are stuck in a “bad loop,” and also expect them to just "snap out of it" without considering specific ways to help autistic people caught in "loops of concern."
- You expect them to be able to operate under high intensity conditions all the time just because they can put in the energy to do it sometimes, not being aware that once the “spoons” are gone, they take a while to build back up. As autistic writer Anne Corwin notes, “I’m not “inconsistent” or a hypocrite just because others can’t immediately grasp what’s different about these situations."
- You demand that they quickly make choices between things or activities, even if you understand that autistic people often need more processing time than non-autistic people—and as a result they "freeze." (Also, per Carol Greenburg: "In large part because of compliance training, autistics believe there is one right answer and many wrong answers for every choice we are asked to make So, from a young age we are taught that there is no such thing as a low stakes decision.")
- You use language or symbols that aren't specific, or have more than one meaning, so the autistic person is stressed rather than reassured by your using visual schedules or other planners to help them through transitions—as they either aren't sure what you mean, or they thought you meant something else.
- You ask them open-ended questions like "what do you want to do today?" instead of asking concrete yes or no questions, or giving them clear choices between specified options.
- You get mad at them, or tell them they're being rude, if they ask for clarification of imprecise requests or instructions like "I just need a few minutes," or "clean up your room" without giving exact criteria or guidelines.
- You don’t give them a specific time for doing chores, but you become upset when they don’t do chores by X time at night, or after you get home from work.
- They are asked to do chores without understanding of their support needs regarding executive dysfunction (ability to plan), and told off when they try to do it, but get it wrong by your standards.
- You don’t break down chores in a way that is understandable and not overwhelming to them, and that also takes their sensory needs into consideration.
- You don’t believe that they are not “hinting” with their body language and facial expressions, and that they mean what they say, without subtext. You believe that if they just “tried harder” they could use body language and facial expressions like non-autistic people do, and do it successfully.
- You insist that they make eye contact with you or other people, even though eye contact can be painful or overwhelming for autistic people, and indeed in many cultures is considered an act of aggression.
- You tell them to use their words or explain what they are thinking in words—when many autistic people think in images, not words, and so cannot possibly do what you are asking (Temple Grandin even wrote a book called Thinking In Pictures, and yet). Or they have processing issues. Or agnosia. Or apraxia. Or situational mutism. Or alexithymia. Or are overwhelmed.
- You ask them to name their feelings and get frustrated when they cannot, without considering that they may have alexithymia (difficulty perceiving or describing their own emotions) like so many autistic people do.
- You treat their functional scripting, echolalia, typing, sign language, or AAC as though they are not real communication, and/or belittle them for communicating in a way that makes the most sense to them.
- You expect them to have the same perceptions as you do, and/or tell them that their perceptions are "wrong," even when autistic people often have synesthesia, which means they really can be smelling colors, or tasting numbers, or seeing music.
- They experience sensory discomforts that seem minor to you but are overwhelming to them: Clothes tags, tight clothes, dry skin, even individual acne blemishes, humming machines, loud sounds, sunlight, temperature, strong scents, low-key flickering lights.
- You try to "desensitize" them to overwhelming sensory stimuli like clothes tags, tight clothes, dry skin, even individual acne blemishes, humming machines, flushing toilets, strong scents, and low-key flickering lights even though research shows this is traumatizing—and that makes them even more miserable.
- You don’t believe in their sensory sensitivities or their perception of pain, and think they are ways of making excuses or getting out of events.
- You force them to sit still or use "whole body listening" (what Carol Greenburg calls "Whole Body Oppression") or shame them for stimming when they need to move to listen or self-regulate.
- They sense flickering fluorescent lights as a painful visual strobing, and/or are profoundly light sensitive.
- They hear something like air conditioning or fluorescent lights buzzing even though a non-autistic person can't hear it, because "Sound sensitivities are yet another consideration when autistic kids, students, and adults have meltdowns “for no reason”—as far as non-autistics can tell."
- You think you've dealt with their hearing sensitivity by giving them noise-cancelling headphones, but don’t realize that for some people those headphones don't account for sudden loud noises—and can even make some aspects of hearing sensitivity worse.
- You fart or eat strong-smelling foods or light scented candles, or make them sit near a kitchen while you cook, or have them be around fragrant flowers or plants—and even though you may not notice, mind, or may even enjoy those smells, they are too much for an autistic person with a sensitive sniffer. (However, some autistics are olfactory sensory seekers, and may pursue strong smells, like going into perfume stores to stim.)
- They have unacknowledged prosopagnosia or "face blindness," and keep getting criticized for not recognizing people, when they literally cannot do so without other markers like a haircut or hat or glasses, especially if someone has changed their appearance. Or they have another kind of agnosia (difficulty using sensory input to identify things), and so can't always recognize places, pets, or other categories—yet get faulted for being rude or resistant.
- They experience competing access needs, like needing quiet when another person needs to be loud, but they are in an "autism school" or "autism day program" where no one considers that autistic students might have very different accommodation needs from each other.
- You make them spend too much time interacting with other people (especially non-autistic people) even though interactions take more effort for them than they do for non-autistics, not less. (Note: many autistics are extroverts and thrive on socializing, but they still need down time when they need it!)
- They do non-enjoyable therapies for extended sessions that non-autistic kids would never be expected to tolerate. Autistic Burnout affects all ages, so maybe don't schedule your autistic child for full-time therapy on top of school.
- They have no unstructured down time to relax and reset on their own terms (including atypical sleep needs), and so are in a state of constant stress, with no release.
- You demand they do "functional play" instead of playing or spending their free time in a way that they choose—a way that is healthy for their autistic development even though it may look "odd" to you.
- They are expected to master the same academic material as their peers without any accommodations, which includes dealing with the chaotic audio, light, and smell of a classroom, recess, and cafeteria, not to mention other children.
- They do not have access to enriching academic or entertainment materials due to assumptions made about their developmental, communication, and/or intellectual disability, and their brain is starving.
- They are bored. Their environment and activity selection is too limited, and/or hasn't been updated in eons. You haven't investigated whether they want different or new posters, clothes, movies, video games, etc.
- You took away their favorite things because you think they are for "younger" kids, and now they don't have their favorite things, and so are without a primary source of comfort and consistency.
- Someone in their life is mistreating them, and they aren't able to tell anyone, because the person has power over them, they think the person is their friend, they don’t want to lose their friend, or they've been conditioned to automatically comply with what other people tell them through ABA therapy or similar approaches.
- You think they are having "behaviors" when they are acutely or chronically sick or in pain, for example with a sinus infection, migraine (very common), ear infection, toothache, heartburn, constipation, gall bladder issues, ehlers-danlos or hypermobility—all of which can present in atypical ways because of alexithymia, interoception, motor processing, and/or communication disability.
- They are on a medication that is supposed to help them, but actually makes them feel dysregulated, disoriented, or chemically restrained via sedation. This reaction to the medication is then deemed to be “part of autism” and no one investigates the distress, or why there is a change in regulation.
- You get mad at them for destroying things like shredding clothes or being tough on furniture, but you've never investigated whether their interest or very real sensory need can be accommodated through things like having access to rags or magazines to tear, or getting bean bags, weighted blankets, or punching bags as deep sensory pressure outlets.
- Their clothes don’t fit the way they need them to. Overall because kids can outgrow clothes so fast; and also bunched socks inside shoes, bunched sleeves under sweatshirts or coats, wedgied underwear inside pants, bras that are too tight or too loose or have painful underwires, and underwear does not support their private bits effectively, or has too-harsh elastic bands.
- You press them about toileting when they don't have the interoception (ability to sense their body signals) skills to understand when and if they need to go, may have co-occurring conditions that make toileting painful or difficult, or they need more time or supports. (Some autistic people will always need toileting support, and that’s OK; some may eventually become partially or fully independent.)
- They are an adolescent or adult, yet you haven't given them any sexual education or outlets—even though they have the same urges as their peers. Yes, even if they have intellectual disability and/or are non-speaking.
- They are gay or trans and you don't or won't see it, or you feel like you’ve allowed enough leniency in gender roles and clothes to believe they can just “live with it,” even if they’re often angry or unhappy. (This is especially galling if their only clothing options conflict with their gender.)
- You tell them they are being rude when they are either sharing factual information or being sincerely honest—or you think they are communicating with their tone of voice when they are communicating solely with their words.
- You don’t believe that they are not able to understand their own tone of voice, and/or other people’s tone of voice.
- You used a firm or non-neutral voice and they think you're yelling at them because they are an emotional resonator and amplifier, and also you talked somewhat louder than usual so you hurt their ears.
- You are using a baby voice to speak to them, because you don’t consider that people with intellectual and developmental disabilities have the full life experience of their actual age, and that describing someone as a “toddler in an adult body” is unhelpful and ableist and dismissive and limiting and harmful.
- You are inconsistent, and do things like requiring them to use "please" or "thank you" every time but not doing the same yourself; farting or picking your nose in front of them despite telling them these things are forbidden in front of other people, or using your phone to play games or watch videos despite telling them to limit their screen time. (Instead, establish "house" or "family" rules that apply to everyone in the family, so autistic family members are not singled out.)
- You didn't do what you said you would do, and you didn't tell them you'd changed directions, or explain why.
- You make them try "just a bite," of food, or tell them to stop being so "picky"—when they have extreme and unaccommodated sensory aversions to some foods. You hide other “nutritious” food in their safe food without their knowledge, which makes the food taste different and worse, causing anxiety and preventing the autistic person from eating that safe food again, so now they eat even fewer foods, which you then blame on the autistic kid.
- They are hungry because they are on a restricted diet or a medication that makes them more hungry (or both), or they can’t tell when they are full due to weak interoception/alexithymia.
- You insist on "no screen time" before bed even though both research and anecdotes show that screen time can be helpful and calming for autistic people.
- You consider their passions to be "special interests" or disruptive, so they are not given time to delve into them to a satisfying degree—or even worse, those passions are gatekept to negotiate compliance. They are only allowed to talk about their special interest to you for a short period of time, and no effort is made from you to engage in the subject.
- They are overwhelmed by their emotions and can't express that distress any other way than a meltdown or shutdown.
- You do not allow them to stim or flap their hands at all because you think it looks weird, or worry what other people may think—even if you know they are happy.
- You said something negative about them right in front of them, as though they weren't right there.
- You touched them or handled them without warning or permission. Yes, this includes giving pills, giving food, giving hugs, and helping them with personal hygiene or toileting.
- They are never given opportunities to succeed, or even to feel good about themselves. They are only criticized or made to feel deficient.
- They don't know they're autistic, and so they think they are a broken person because they aren't like other people.
- They know they're autistic, but everything they hear, see, or read about autism makes them feel like a burden or an alien.
- You just don't accept them for who they are, and they are depressed, anxious, and/or stressed.
- You know they are autistic, yet you keep expecting them to "just do things" like adapt to surprises without distress or interact socially like a non-autistic person, and are upset with them when they are not able to.
- You believe that you don’t have to change how you think or what you say or how you act—but the autistic person does.
- They are forced to be with people who do the things in this list, or let the things in this list happen to them.
With sincere thanks to all the (other) autistic people, especially TPGA editor Carol Greenburg, who write about these issues so today’s autistic kids and adults can have an easier time making their way through the world. You can find many wise autistic writers in the links above.
This checklist is the result of several years of observation and synthesizing, so any resemblance to any other writings is coincidental—or due to shared fury about the same misunderstood topics.
We also have a printable version of this checklist—with checkboxes!