March 8, 2020

The Other Hidden Curriculum: Practical Strategies for Nonautistics Interacting with Autistics

The hidden curriculum refers to the unarticulated and unacknowledged rules, values, and behaviors people learn just by participating in society. Much has been made of the importance of teaching the hidden curriculum to autistic people, due to their challenges understanding nonverbal cues. Without such direct instruction, autistics would purportedly commit errors that nonautistics deem “obvious”, embarrassing, and offensive. Much less has been made of the importance of teaching the other (autistic) hidden curriculum to nonautistic people. Their failure to recognize and validate the needs and values of autistics has led to mistakes that are just as obvious, embarrassing, and offensive as those made by autistics. 

The message is clear: Autistics must learn the nonautistic hidden curriculum; nonautistics are not held to the same standard. 

Let’s change that and teach the other half of the hidden curriculum.

Lesson 1: Nonverbal Communication

Autistics do use and understand nonverbal communication. Research has shown they even use eye contact. They simply use it in ways that look different from nonautistics. Unfortunately, these differences have been utterly disregarded. When autistics talk about their usage of nonverbal communication, nonautistics do not seem to listen and often attempt to correct autistics.

Autistics know how much nonautistics value eye contact. Autistics, however, would rather count every grain of sand on a beach than look you in the eye as frequently as nonautistics. They’ve developed tricks to fool nonautistics - looking to the side of the face, looking at the eyebrow, looking between the eyes, looking at the mouth. Most nonautistics do not realize they are being fooled. 

Autistics can listen without looking at you. They might not be able to chew gum and walk without bumping into the wall, but they can knit, fidget, pace, flap, tap and listen to you. Bonus: you do not need to look at them either.  

Do not touch autistics. Think about the size of a kiddie pool; that’s the starting point for the right amount of personal space. Just to be clear: Hug? No. Shoulder tap? No. Fist bump? No. Pat on the head? No.Touch of the hair? No. High five? No.Comforting arm caress? Ew. No.

Just because you might not be able to see empathy in the way you expect does not mean autistics are sociopaths, narcissists, aliens, robots. Autistics are highly empathetic; they feel things very deeply, even too deeply. They just might not show their emotions in the same ways you do.

Sitting across or next to someone can be very uncomfortable. This can feel too close, too intimate due to the proximity and the quick availability of eye contact. Some autistics prefer to sit on a right angle from you, farther away, or on the floor. 

Autistics may experience RAF, or Resting Autisic Face. It’s quite similar to RBF, or Resting Bitch Face, which you may have heard of before. When at rest, their face may look as if they are angry, when in fact they are not. Please do not ask them to smile, or ask if they are angry. 

Main Ideas for Nonverbal Communication

  • Please stop staring. It’s beginning to get creepy.
  • No Touchy.  
  • They’ve got empathy, yes they do! It doesn’t mean they look like you!
  • Don’t stand or sit so close to them.
  • They are, in fact, fine. This is just their face.

Lesson 2: Identity

For many autistics, autism and being autistic is a core part of their identity. The way that nonautistics handle disclosure of an autism diagnosis and the language surrounding it can have a great effect on how autistics feel about themselves and their diagnosis. When individuals in their own life or organizations purported to “help” autistics consistently treat autism as if it is a terrible disease that should only be mentioned as something separate from them, spoken of as a tragedy, and something they should only want to be cured of but never celebrate, it sets autistics up for a no-win situation when it comes to self-esteem and celebrating the amazing things that come with an autism diagnosis.

When someone discloses their diagnosis, do not say:

“You don’t look autistic.”

“Are you sure?”

“You must be really high functioning.”

“Oh, I’m sorry to hear that.”

“I never would have guessed.”

These are not compliments. 

Do not compare the autistic person in front of you to any other autistic person you know, think you know, might know, know of, or have seen on television. There is a common saying, “If you have met one autistic person, you have met one autistic person.” Do not say:

“Oh, you’re so different from (name of some autistic person).”

“You remind me of (insert television or movie character).”

“My cousin’s uncle’s brother’s mother’s son has a son with autism.”

Do not correct the way autistic people refer to themselves. Most autistic people prefer Identity First Language, instead of Person First Language. This preference is the exact opposite of what many people have learned at school or work or through culture. Autistic people cannot separate autism from themselves. You shouldn’t either. At the same time, please respect the preferences of each autistic person you meet.

“I learned (in college, work training, the internet) that person-first language is appropriate (# of years, decades ago). So I won’t call you autistic.”

Being autistic shapes an identity. Don’t tell autistic people that they should not “limit” themselves to their autism or “reduce” themselves to being autistic.  

Autism Speaks is a hate group. ABA is torture. Ask most autistics, and they will happily tell you why, and provide some references to other autistics who second, third, fourth, fifth….their opinions. 

Main Ideas for Autistic Identity

  • When an autistic discloses, please say: “Thanks for trusting me enough to tell me.”
  • Upon meeting an autistic person, the best thing you could say is, “It’s nice to meet you.”
  • Autistic is not a slur. Autism is not a disorder. 
  • Autism shapes every part of someone.
  • Autism Speaks is a hate group. ABA is torture.

Lesson 3: Senses

Autistics are very sensitive beings. They are the canaries in the coal mines of life. With superhuman senses, the world comes at them in an intense daily assault. From morning to night, their brains are constantly trying to sort and filter a cacophony of sounds, smells, sights, tastes, and tactile sensations that no 5-D movie could come close to simulating for a nonautistic. The sheer intensity of the continuous onslaught is further intensified when you consider that autistics must continue to go about their daily lives as if nothing is happening, while attempting to process this waterfall of sensation in the background.

Trust autistics when they say the world is more intense for them. Their senses are turned up to 11; it may be hard for you to imagine or understand, but they really do experience the world differently than nonautistics. 

Although autistics may have challenges labeling emotions, do not minimize or dismiss what they are feeling (“It’s not that bad!”, “That doesn’t hurt!”) or try to tell them what they are feeling. 

Don’t tell an autistic person you have felt the exact same thing as them. The intention might be supportive and empathetic, and those goals are well intended. Factually, autistics know their experiences and emotions are unique to themselves. So, an honest attempt to be supportive may result in an autistic person saying, “You are wrong”. (And, factually, you are.) 

Let autistics fidget, stim, pace. These actions improve focus, attention, and anxiety. Harmful stims, such as trichotillomania, cuticle biting, head banging, or punching or slapping one’s self, should not be punished or ignored. At the same time, developing replacement stims is the job of a therapist or some other trusted person. 

Intense lighting can cause migraines and contribute to overload for autistics. Bright lights, fluorescent lights, flashing lights, direct lighting, or any of these lights bouncing off of reflective surfaces can be blinding for autistic eyes. To cope, they might shut blinds, wear sunglasses (even indoors), and prefer ambient lighting to fluorescent lights.

Autistics smell things you do not, and many fragrances can be very overwhelming, nauseating, or trigger migraines for autistics. Perfume, lotions, scented soaps, cologne, air fresheners, candles, essential oils, cleaning chemicals, and other fragranced products can completely overwhelm the senses and cause incredible pain and nausea. Try not to take it personally if they make a face, hold their breath, or tell you that you smell. 

Sounds that might not bother you can be absolute torture for autistics. Sounds that you may not notice, such as an appliance running, silverware scraping on plates, a conversation across the room, or music that doesn’t seem “that loud” to you can seem so cacophonous that they drown out all other sound and any chance of coherent thought. Headphones or earplugs can make a world of difference. Please consider that environments are often too loud for autistics. If you are concerned that something you are doing is too loud for an autistic, please ask. 

Some textures and tactile sensations can be far more intense for autistics than for nonautistics. Things like clothing tags, seams in a shirt or a pair of socks, or rough or stiff fabric can be uncomfortable, or even painful. These sensations can be so overwhelming that they completely block out an autistic person’s ability to think about anything else. 

Once autistics find clothes that are comfortable, they may buy multiples of the same thing or wear the same things on a regular basis. They know what works and they stick with it. 

Busy patterns - carpets, curtains, wallpaper - are visually overwhelming and can lead to intense nausea, dizziness, vertigo, and headaches. Please know that when encountering these types of patterns, autistics may be understandably overwhelmed. However, lava lamps and water features can create feelings of calm and serenity. Many autistics enjoy having lava lamps, glitter lamps, fountains, etc., around to visually stim.

Autistics require routines. They are a way of establishing order and safety in a world that can often feel chaotic and dangerous. Things like having the same breakfast each morning, taking the same route to work each day, or being able to count on the same barista at your morning coffee stop are sources of comfort and a way to quell anxiety in a world not made for you.

Main Ideas for Senses

  • Trust that autistics know and are telling the truth about their experiences in their own bodies.
  • Nope. It’s not that long. Read it. Then read it again.
  • Listen. Validate. Do not attempt to commiserate. 
  • Let. Them. Stim.Trust that autistics know and are telling the truth about their experiences in their own bodies.
  • Listen. Validate. Do not attempt to commiserate. 
  • Imagine all senses have the same effect as staring at the eclipse.
  • Ax the Axe spray.
  • You are too loud. The world is too loud. EVERYTHING is TOO LOUD.
  • Nonautistics may “like” comfy things. Autistics require them. 
  • Trippy is bad. Stimmy is good.
  • Routine has its benefits to autistics. Think Groundhog Day.

Lesson 4: Conversations 

For autistics, a conversation with a nonautistic is like trying to navigate a minefield while having a heavy metal concert blasted at you while a full pyrotechnic show goes on overhead. Social games and hidden meanings lie in wait to explode at any moment, while nuance and subtleties distract the autistic from the minefield at their feet, making navigation nearly impossible. Even if by some miracle they do manage to cross the minefield unharmed, they are utterly exhausted, their ears are ringing, and they have the worst headache of their life. All the strategizing, noise, and fireworks has absolutely zapped their energy, maybe for days. People do this for fun?

Be direct, to the point, and say what you mean. Autistics’ feelings are not likely to be hurt by direct speech. Conversely, they appreciate not having to guess at hidden meanings or agendas. It saves them a lot of time and energy and avoids conflict. Don’t hint, hedge, or beat around the bush. 

Autistics ask questions to understand, clarify, to seek out more information, and to avoid confusion. They do not ask questions to challenge your authority, to play games, to inadvertently express disagreement with you, or simply to make you angry. If an autistc asks “why?”, this is not an indictment, a challenge, an avoidance technique, or a bratty inquiry. Asking “why?” attempts to seek out information to help accomplish something. (Not piss you off.)

Autistics use language literally. “You are not listening to me” means exactly what was stated. You might automatically feel attacked or hurt if this phrase was spoken to you. However, the autistic person is not intending to hurt your feelings. Instead, “you are not listening to me” is a statement of fact. You aren’t listening to what is being said because you are already attempting to interpret hidden meanings that ARE NOT there. Autistics say exactly what they mean. Don’t look for nuance, games, or extra layers, just listen to the words as they are spoken.

Nonautistics react to all information emotionally first and logically maybe. Autistics, on the other hand, tend to react to information logically. This can lead to the incorrect assumption that autistics are not reacting or are underreacting to a situation, because nonautistics do not see the expected emotional reaction. After an announcement of bad news when everyone else is crying, the autistic may seem quite calm, but mentally they are thinking ahead to what this will mean to them, possible outcomes, plans they need to make, people they need to contact, appointments that need to be made, and trying to stay calm so as to avoid a meltdown.

If an autistic person is not answering the question you are asking, you are asking the question in a way that the autistic person is misunderstanding. This is likely due to the use of figurative language or implied meanings. “Would you like to work an extra shift on Friday?” “No.” While nonautistics understand that the question is a mere polite formality with an obvious “yes” answer, autistics answer honestly. However, this does not mean that if asked directly to work an extra shift, they would not say yes. In a situation like this, stop, reword the question, and ask again. 

Autistics dislike small talk (e.g., the weather, “how are you?”). That is not to say that autistics are incapable of faking pleasantries. They can, but not without costs: energy, exhaustion, patience, and comfort. Autistics love discussing topics of greater depth and importance, or anything related to their special interests. While these interests might be different than those of nonautistics (e.g., The Bachelor, sports teams), they are not weird or wrong. Just different. 

Do not spend 5 minutes to end a conversation with an autistic. Greetings and goodbyes generate a considerable amount of anxiety for autistic people. The uncertainty of what will happen next and when this will happen can be overwhelming. A simple goodbye, without significant pomp and circumstance, will suffice. 

Autistics remember what is said, usually verbatim. More specifically, they remember the words spoken to them, the words they used, and the factual content communicated. Responding to an autistic by saying “I did not mean/say that” and/or “You did not say that” are inaccurate and not helpful. Most likely, the statement was quoted perfectly. However, the autistic person may have missed or may not understand your emotional and implied meaning. 

Do not make emotional conclusions based on what autistics say. Such advice is easier said than done because nonautistics automatically and quickly react emotionally to what they see, hear, and think. But, it is critical to remember that autistics do not typically use manipulative or passive aggressive techniques for the purpose of communication. If they feel a specific way, they will tell you as best they can. 

Ask autistics for their contact preferences - face-to-face, phone, text. Many autistics prefer text because they can collect their thoughts and express themselves in their own time. They also prefer text because they are not responsible for trying to read the other person’s nonverbal communication. Phone is highly disliked because of the difficulties of knowing when to speak. 

Main Ideas for Conversations

  • Say what you mean, and mean what you say.
  • Answer questions patiently, honestly, and accurately. 
  • Listen. Literally.    
  • Autistics are like ducks; calm on the surface, but paddling frantically just to keep up.
  • Autistics will answer the question asked, not the question implied. 
  • Push past pleasantries to a clear topic quickly. 
  • Politely, just end it.
  • Do not imply meaning or feelings. State them.
  • If you are unsure, ask. Don’t assume.
  • Do not call. Text unless requested to do otherwise. 

Lesson 5: Emotions

While they may have difficulty describing them, autistics certainly have no difficulty feeling the full range of human emotions. Like their senses, the autistics emotions (and those of others) can be experienced quite intensely. They often feel too much and can become easily overwhelmed. Life has often taught autistics that emotions get them into trouble and make things hard to bear.  

Autistics are not always able to describe their emotions or display their emotions. But, do not mistake an apparent lack of emotions on the surface or words to describe those emotions for a lack of emotional depth within. Asking an autistic what they are thinking, rather than how they are feeling, is a more effective approach to understanding their feelings. 

Autistics can become overwhelmed for a number of reasons, including loud noises, busy environments, confusing social interactions, changes to routine, or anything that causes them to feel overwhelmed. This can lead to shutting down and being unable to speak. If an autistic person is around you when this happens, please sit silently, patiently, and in your own personal space bubble unless otherwise requested. 

Autistics can be (consciously, or unconsciously) highly affected by the emotions of those around them (empathy). This can lead to becoming overwhelmed, or upset for what seems like “no reason”. This can be just as upsetting to them (as it is to those around them) because they do not always know what is causing them to feel the way that they do.

Autistics can have challenges monitoring their tone of voice. They may sound rude or standoffish without feeling accordingly. They may be too loud due to their emotions, energy levels, and ambient noises. Their tone may be unpredictable and inconsistent within a single conversation. 

Autistics might have to ask “Are you upset?” more often than most people. This is because of the difficulty reading contextual and nonverbal cues. But, the need to ask the question also stems from the almost automatic assumption on the part of autistics that they are responsible for someone’s negative emotions (or a social conflict) due to their communicative differences from nonautistics. Honest, direct communication of all emotions will greatly assist autistics in the emotional Mad Libs game they play everyday. 

Autistics experience exhaustion and burnout. Social interaction, sensory overload, and extended masking trigger burnout. Burnout is the result of repeated exhaustion without adequate recooperation. Recooperation times vary greatly. Sometimes, burnout is so severe that jobs must be quit, friendships abandoned, and years lost. 

Many autistics experience concepts such as justice, equality, fairness, mercy, knowledge, and truth as deeply felt emotions. (Credit and thanks to Terra Vance of Neuroclastic for putting this idea into words.) They can get very involved in causes that are important to them, and it can be quite upsetting when those closest to them do not understand the importance. It can be hard to understand why a touching holiday movie that makes their nonautistic spouse cry doesn’t seem to bother them, yet seeing stories of injustice on the news or being accused of lying can make an autistic so upset they nearly have a meltdown. It can be difficult to explain to nonautistics why something them so emotional, or why certain causes are so viscerally important to them. 

Relationship upkeep can be difficult for autistics. It’s not that they don’t care about you (they do!) but remembering to do things like check in periodically can be difficult (there’s a lot going on in their heads). However, autistics can be some of the most loyal and supportive friends you’ll ever have.

Main Ideas for Emotions

  • Feelings don’t need to be named to be felt.
  • Respect the need for quiet and space during shutdowns.
  • Affective empathy can be strong amongst autistics. 
  • Tone of voice is not always a helpful gauge. 
  • Communicate directly and honestly. 
  • Imagine running a marathon daily. For the rest of your life. That is burnout.
  • Big ideas and great empathy can be felt as very deep emotions.
  • Just because autistics don’t check in, doesn’t mean they’ve checked out. 
Special thanks to @Missy_Woford for collaborating! Give her a follow!
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