Crisis communication card for non-speaking adults
Your non-speaking adult cannot tell the ER doctor that she has a peanut allergy or that flashing lights trigger seizures. The card in her wallet can. Here is how to build one that survives a bad night.
Get a photo taken today. Not a school photo, not a Facebook selfie. A close-up, well-lit, current photo. Everything else on the card can be updated. The photo is what tells the responder they have found the right person in the first three seconds.
Photo
Recent, close-up, both eyes visible. Face only. No scarves or hats she does not wear daily.
Diagnosis
Autism spectrum, support level, co-occurring conditions in one line each.
Do not restrain
If restraint history exists, name it in red at the top. Prone holds have killed autistic adults during meltdowns. Say so.
AAC location
Communication device in blue backpack. Ask before removing. She may pull it toward her to escape the sensory chaos of a hospital.
Vocabulary
About thirty spoken words and two hundred signed. List the words she uses under stress and what each one means.
Calming
Weighted lap pad. Song called Stand By Me. Deep pressure to shoulders. In that order.
What each section of the card contains
Name, DOB, photo, address, guardianship
Autism level, IQ if known, comorbid conditions
Verbal words, sign, AAC, PECS, gesture
Allergies, seizure history, chronic conditions
Name, dose, timing, prescriber, last dose
Trigger list ordered by intensity
Three specific inputs in order of preference
Guardian, case manager, doctor. 24-hour lines
Amelia is 31 and non-speaking. She uses her TouchChat app for most communication and has about thirty spoken words for emergencies. The night she had appendicitis she was in a waiting room for four hours. The nurse who finally listened was the one who found the laminated card in her backpack and read the line that said This person points to what hurts. Amelia pointed. Surgery was ninety minutes later.
When she is admitted or detained, here is what you do
Response ladder
- 1Meet the responders at the door with the card in your hand.
- 2Read the top line aloud. This person is autistic and non-speaking. Please read the whole card before you speak to her.
- 3Show them the AAC device. Do not let them take it away.
- 4Point to the medication section. Read it. Answer their follow-ups.
- 5Ask for a quiet room. Every hospital has one. They will not offer.
- 6Stay in the room. If they insist you leave, ask why in writing.
Have ready
- Two laminated crisis cards
- AAC device with charger
- Comfort items (weighted lap pad, chewy)
- Change of clothes and underwear
- Snacks she will actually eat
- Noise-canceling headphones
- Preferred communication book (PECS pages)
- Your ID and guardianship letter
Have three go-bags. Home, car, day program locker. The one you need is always the one you did not think you would need.
The nurse who finally listened was the one who found the laminated card in Amelia’s backpack, at hour four of the wait, sometime after midnight, when the ER had already asked her twice whether the pain was a five or a seven, and neither number meant anything to her, and neither number was going to. She pointed. The card said This person points to what hurts. Ninety minutes later Amelia’s appendix was in a bag on a tray. The card had done what four hours of medical training had failed to do. It had given her a voice a stranger could hear.
What “non-speaking” actually means
About one in four autistic individuals is minimally verbal in adulthood, based on Tager-Flusberg and Kasari’s synthesis in the Journal of Speech, Language, and Hearing Research in 2013, followed by Norrelgen and colleagues in 2015. Minimally verbal is not the same as noncommunicative. Amelia has about thirty spoken words she can use under stress, roughly two hundred signs, a TouchChat app on an iPad she carries in a padded case, and a repertoire of gestures and pointing behaviors that convey more than most sentences do.
When people say a person is non-speaking they mean unreliable spoken output under duress. Under calm conditions, at home, with someone who knows them, communication happens. Under an ER fluorescent light at eleven at night with pain and strangers, most of the tools disappear. The card is what remains when everything else fails.
Why the ER is the worst room
Emergency rooms are engineered for speed and throughput. They are the worst possible sensory environment for an autistic adult in pain. Fluorescent overheads. Beeping monitors. Rotating cast of unfamiliar people. Latex gloves. Antiseptic smell. Loud speakers. Questions asked with rising volume when the answer does not come fast enough.
Every minute an ER team spends trying to establish communication is a minute your adult is escalating. The card compresses that minute into three seconds. It is not a courtesy. It is triage.
Building the card, section by section
Start with a color close-up photo taken today. Not last summer, not the yearbook shot. Today. The photo has to match the person a stranger will see. Print it at four inches by six inches on card stock, laminated. That is the front.
The top line, in twenty four point bold, reads: This person is autistic and non-speaking. Please read the whole card before you speak to her. If restraint has ever been used with your adult and it went badly, add a second red line: Do not restrain. Prone holds have caused injury in the past.
Identification block: legal name, date of birth, home address, guardian or supported-decision-making authority with 24-hour phone. Diagnosis block: autism spectrum, support level, co-occurring conditions in one line each (seizure disorder, GI, sensory processing, whatever applies).
Communication block: how she communicates. “AAC device (TouchChat) in blue backpack. Please do not remove. She may pull the device toward her to escape sensory chaos. About thirty spoken words including ‘hurt,’ ‘water,’ ‘no,’ and ‘mom.’ Points to what hurts.” That last sentence has saved lives.
Medical block: allergies, current medications with doses and last-taken time, seizure history, restraint contraindications. Sensory block: three triggers ordered by intensity. Calming block: three inputs ordered by preference (weighted lap pad, specific song, deep pressure to shoulders in that order). Contact block: guardian, case manager, primary doctor, hospital preference, all with 24-hour numbers.
The AAC problem
The AAC device is your adult’s voice. In an ER, in a police station, in a psychiatric hold intake, someone will try to take it away. They will call it a personal effect. They will lock it in a bag. They will hand her a piece of paper and a crayon.
The card must name the device by manufacturer and app, name its location, and instruct in one line: Do not remove. This is her voice. Attach a wallet-sized version of the same instruction to the device case. Photograph the device and add the photo to the card so it can be identified by strangers who have never seen an AAC in the wild.
If your adult uses PECS or a communication book, bring the current volume with you. Bring the backup. Bring a photocopy of the twenty most-used pages in a plastic sleeve in your own bag.
Distribution beats perfection
A perfect card that sits at home in a filing cabinet does nothing. A B+ card that lives in three go-bags, one wallet, one refrigerator door, one case manager’s file, and one glove box saves the day.
Print twenty copies the first time. Give one to the case manager. One to the day program director. One to the primary doctor. One to the dentist. One in the fire safe. One in each go-bag. One in the wallet. Two in every car. Keep six spares.
Register your adult in the local EMS or police special-needs registry so the address record already flags autism and points to the card. Ask the case manager to attach a copy to the emergency contact page in her file.
When she is picked up alone
The nightmare scenario is when the encounter starts without you. She wanders. She elopes from the day program. Someone calls a wellness check. An officer stops her in a parking lot. She is alone and she has words for none of it.
The card in her wallet is the only advocate she has. That is why the card lives in her wallet and not just in your bag. That is why the top line names her diagnosis before it names anything else. That is why the calming section lists three specific inputs a stranger can attempt without training.
Practice with her, at whatever level she can. Practice the movement of reaching for the wallet and handing it forward. Practice being still. Practice waiting. If she has one phrase she can rely on, drill it: “Card in wallet.” Three words. They will not be perfect. They will be present.
Updating the card is the whole job
The card is a living document. Every medication change, new sensory trigger, new calming input, new diagnosis, or move updates the card. Old cards mislead as badly as no card. A stranger reading last year’s medication list is worse than one who has none.
Quarterly reprint. Fifteen minutes. Do it on the same day you change the smoke detector batteries. The photo gets refreshed once a year on her birthday. Everything else gets refreshed the day it changes.
The card is not a memento. It is a piece of medical infrastructure. Treat it like insulin.
Jim Palasty is the founder of OASIS for Autism and a single father of an adult autistic daughter in Michigan.