Communicating with smalls who can't speak right now
To clarify: this post is written for carers of age regressors who experience temporary loss of speech from time to time. My small one sometimes regresses too small to speak, and when he's big, overstimulation can also cause a verbal shutdown.
This post is written by an autistic person with autistic friends, family, and an autistic partner, but it is not about nonverbal autistic people. I'm not nonverbal, and neither are any of my close friends or family members, so I lack the adequate experience to know how to accommodate someone who does not process words the same way as someone who can verbalize.
What to ask? (Help for how to proceed, written with non-autistic carers in mind)
Understanding sensory management
What to ask: (Autistic triage, lol)
If your small one is overstimulated, then the first step is to determine what is causing irritation.
"Are you overstimulated?" Can work for older kids, but "is everything too much?" May work better for younger regressors. Similarly, "is everything too quiet?" Is a great way to ask if they're understimulated.
"Do you know what the problem is?" Opens the door for them to point to the problem, cover their eyes/ears, or tug on their clothes.
If they answer no, start removing stimuli and asking if it's better. E.g., dim the light and ask "is it better with the light low?" If they indicate yes, repeat question 1. If they indicate no, ask if they want the light back up.
If there's still a problem and it's not external, it's probably an internal stimulus. They may be hungry, thirsty, or need to use the restroom. They may need to switch positions, stretch their limbs, or treat a minor injury. They may feel nauseated, have dry eyes, or need a shower. Interoception can be really hard for autistic people, and any of these stimuli can register as just pain, distress, discomfort, or overstimulation, without a clear source.
I know the options for possible sources for overstimulation is seemingly endless, and being asked questions can itself be overstimulating. You can reduce this problem by identifying for yourself the most likely triggers. For example, if your small just had a meal 20 minutes ago, then hunger probably isn't the culprit. If the noise level in the room (and coming in from the doors and windows) is already low, that's probably not the main problem.
You can also ask some questions silently, by offering them helpful objects (noise-canceling headphones, fidget toys, their phone, blankets, plushies, beverages, etc.)
Lastly, it's important to know that when overstimulation leads to a shutdown or meltdown, it's rarely due to one cause. It's because there's just too much going on all at once. It's not "the light is too bright," it's "the light is too bright, my clothes are uncomfortable, there is a small beeping noise, I'm getting a headache, and I'm carrying stress from events that happened earlier today."
Because it's a cumulative effect, removing some of the irritants (and adding soothing stimuli) can be enough to start to return the person to baseline.
As they approach baseline, they'll be able to think better, and may start to be able to identify problems on their own. For example, when the sharpest lights and noises are blocked and their body is at the right temperature, they may be able to identify "oh, I'm thirsty!" and request a beverage (with gestures, writing, typing, etc).
As they approach baseline, they may be able to verbalize again, or they may still need a break from speaking. The process of your body moving from a high-stress state to a low-stress state takes time. Your body has to filter out all those stress hormones, and build back up the feel-good hormones.
It can be that nothing is actively wrong anymore at that exact moment, but they need some quiet time with their favorite media to rest and recover.
If they can still type, the app Leeloo is a free, albeit limited, AAC program.
[Link to Leeloo AAC via Google Play]
Can read aloud what you type (TTS)
Has pre-programmed words with pictures in some categories
Cute aesthetic geared towards children
Can't add your own words and pictures
Some categories are behind a paywall
Can't record your own pronunciations
For regressors who are old enough to type, this is a great resource.
For regressors who are younger, the limited number of programmed images & words may be a problem.
The above image shows two ways to show your small options, which they can select through pointing or placing their hand on top of the desired option.
Above the orange line is for yes/no questions. I find that when Bunny is too overstimulated to speak, his needs are often too complex to put into a simple nod or head shake, so an "other" option is essential.
Placing "other" in the center also allows him to point between two options to indicate "yes, but I need accommodations" or "this is similar to what I need, but not quite".
Below the orange line are 3 symbols 🤎🏵⭐️. The specific symbols used don't really matter; I just drew a heart, a flower, and a star because they're simple shapes every kid has seen a thousand times, so it's not difficult visual stimuli for the small one to process.
While you draw the symbols, you explain to them what the options are. After the first question, you can either turn the page to make new symbols, or you can reset the meaning of the same symbols.
If the regressor struggles with resetting the meaning, but you don't want to draw a new set every time, then try just drawing 2-3 sets and switching sets between questions.
You can also place 3 toys in front of the regressor for them to grasp, if they don't respond as well to requests for pointing. This method is excellent for very, very young regressors that struggle to read.
Accommodations for blind / visually impaired regressors :
You can still use the option chart method, of course. You can guide their hand to 3 different, familiar objects, or verbally inform them what you're placing in front of them. It's important that the objects are very different, so they can find and pick up (for example) the cold, metallic spoon, or soft plushie, or smooth stone without confusion.
If you have permission to touch their body, you can assign meaning to different body parts, e.g. right shoulder for yes, left shoulder for no, knee for "maybe/kinda", top of head for "I don't know".
I specify "if you have permission to touch" because verbally indicating body parts will involve the possible factor of right/left confusion. A regressed person may temporarily lose the ability to tell right from left, but if you touch each shoulder, they're likely to be able to remember which shoulder means "yes" and which means "no".
I don't think I need to explain this one.
Gain the ability to communicate better with more people in your local Deaf community
Gain the ability to communicate with noise-canceling headphones on, thereby reducing your level of auditory stimulation 🎧
Can listen to music and talk at the same time 🎶
Can talk in loud places like buses and trains without wanting to fly out of your skin. 🚌 🚂
Gain the security of knowing that as you age, if you start to lose your hearing, you'll still be able to communicate. 👵🧓👴
For many reasons, it's best to learn directly from a Deaf teacher, and that costs money. If you have $10 USD spare per week and access to reliable transportation, you can probably join a beginner class held by your local Deaf resource center without any issues, but not everyone has those things. There are also courses held online, but please try to find one that teaches your regional sign language. (Learning ASL with a San Francisco accent when you live in NYC is perhaps a bit odd, but not as bad as learning sign language from a whole different country.)
It takes a lot of time to learn another language, so you'll still need a different method in the meantime.
Understanding sensory management
This is probably obvious, but when you're autistic, a great deal of effort goes into curating your sensory input. Speaking as a city-dweller, we live in a loud, stinky, bright, ugly, stressful, uncomfortable world, and we can't change that.
Arranging your schedule/routine to include regular bursts of comfort and happiness, and reducing irritants where possible, is necessary self-care for an autistic person. Disruption to these processes is distressing because we really rely on these skills to manage the uncomfortable world.
[Example] : "I always watch ____ and eat ____ on my lunch break." = Going out to lunch with a friendly coworker will mean giving up my restful time, adding a whole lot of unanticipated stressors, and require conversation during a vital time I use for quiet relaxation. This is how I get through my work day.
[Example] : "I only eat this brand of [food item] and wear [specific clothing type/brand/fabric]. I am upset if this is unavailable." = I know what feels good in my mouth and tastes good, and I know what feels good on my body. Eating/drinking these things gives me a reliable burst of comfort and happiness. Wearing these things gives me a steady stream of reliable comfort/happiness throughout the day.
You can probably think of a point in your life when you were going through a difficult, emotional time, and you were taking things day by day, hour by hour. You got through work 15 minutes at a time, counting down til your next break. You spent your break doing something comforting. Maybe you avoided watching the news and avoided stressful family members.
You probably felt more irritable than usual when the grocery store radio plays a song you dislike, or your shopping cart has a squeaky wheel, or your watchband keeps catching on your arm hair, or the cashier looks like they're judging the nutritional content of your purchases and is considering making a bad joke. Normally, you'd filter out these mundane annoyances, but now they set your teeth on edge.
Maybe there was only one thing you looked forward to each day, like a little oasis. And if something went wrong with that precious thing, then everything you've been trying to keep inside would come spilling out in jagged breaths and hot tears spilling down your red, embarrassed face.
Recalling all this, you might notice that during those difficult, emotional times, non-autistic people use the same skills as we do --- limit stressors, and increase opportunities for comfort and happiness.
You do this naturally for others, already!
When your loved one is in mourning, what do you do for them? You limit stressors (clean their house, do their laundry, run errands for them, etc). You increase their comfort and happiness (give them gifts, make them their favorite foods, take them out to see their favorite sports team/movie franchise, etc).
Why does grieving require similar skills to daily life with autism, even though being autistic can be a joyful experience?
Autistic brains interpret sensory information differently than allistic (non-autistic) brains. We struggle to filter out unimportant stimuli, and we notice fine details, which means there is a LOT of stimuli. We just experience a "louder" external world than allistic people do.
When allistic people are in a heightened emotional state, they temporarily lose the capacity to filter out stimuli. This means that, for a time, they're experiencing a very loud internal world (from the heightened emotion) and a louder than usual external world all at the same time.
So when your autistic loved one freaks out about something you interpret as unimportant, please keep in mind that whatever it is, it's something that is important to them. It's something they were relying on, and looking forward to. The world is so, so loud. We need our reliable comfort and happiness. We need our rest and relaxation, (even if that rest and relaxation is achieved via jumping, spinning, dancing, singing, or making specific noises).
Thanks for reading :). I hope this gave you (and your small) something to discuss or try.
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