How to Spot & Support An Autistic Meltdown
A Break-Out Guide for Street Medic and Safety Teams
This Break-Out Guide is part of the Accessible Activism Guide, a robust resource created by a team of disabled people in order to transform the way disabled people plan for and participate multiple forms of activism with the support of community and fellow organizers.
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Introduction
Meltdowns are extreme stress responses that cause the person experiencing a meltdown to lose control of their faculties -- both mental and physical -- and given that autistics are more likely to have stress sensitivities and sensory differences, autistics are more likely to experience this kind of response. A meltdown is a neurological reaction similar to the levels of self-control people have during a seizure (read: little to no self-control accessible). We don’t punish or shame people who have seizures that need help, so think of meltdowns through that lens if it’s helpful. A meltdown can be manifested in different ways.
We’ve broken down what to know about meltdowns, what to look for, and how to help. Much of this guide consists of direct phrasing from autistic people and we have eliminated names to ensure the safety of those who disclosed this very personal and helpful information to us.
A note on language: A team of disabled collaborators created the Accessible Activism Guide. As such, we use identity-first language throughout to describe our team’s preferred method of identity expression. Similarly, this break-out guide was crowdsourced from the generous disclosures of autistic people and led by an autistic person. Again, most of the language found in this guide comes from direct quotes of those in our community who shared their experiences with us. We offer our utmost thanks to the community that helped to create this resource.
Meltdown Information: What Autistic People Want You to Know!
Meltdowns -- The 3 Stage Model
More General Meltdown Information
* How a meltdown feels:
* Anxiety, pain, overwhelm, panic
* Feeling more irritable than usual, or in other words, having a smaller window of tolerance
* A loss of control
* A meltdown is not necessarily or always anxiety. A meltdown is often an overwhelm response.
* A person in a meltdown is most likely in pain. There is a misconception that sensory disorders cause anxiety, when in fact they most often cause physical pain. When encountering meltdowns, know that the person is likely in physical pain!
* Some people that have meltdowns lose control over themselves and their actions. Many may go into auto-pilot mode and they don’t remember much about the meltdown. Many report feeling fuzzy or dissociated during a meltdown. Once people cross the line into these modes, it’s very hard to come back and can take a while. Some meltdowns can last months, even.
* During a meltdown, autistic people may very well be unable to hear you, similar to being underwater.
Stimming
* Stimming or stim is short for “self-stimulation”
* A stim is anything that is repetitive and regulating.
* Stimming can be voluntary, semi-voluntary, and involuntary and is usually healthy and great! In situations of high distress we can see involuntary (and at times harmful/self- injurious) stims.
* Stimming does not mean meltdown! Often, stimming is a sign that someone is happy or enjoying themselves. We offer ways to spot changes in stimming below, which can indicate meltdown.
* Common stims:
* Rocking
* Flapping arms like they are wet
* Verbal/vocal stims like repeating words or phrases or sounds
* Pacing back and forth
* Jumping up and down
* Shaking head back and forth
Signs of a Meltdown
Meltdowns are not universal; meltdowns can look very different from person to person and many people experience meltdowns in different ways every time they have them. Here is a non-exhaustive list of signs of a meltdown and how to spot them. Remember that a meltdown will likely be some combination of the following:
* Physical
* Convulsions
* Vibrating
* Heavy breathing and gasping, may almost sound like choking
* Movements and gestures such as tapping or hitting parts of the body, stamping feet, rocking, biting hands or lips
* Movement and stimming may get a lot more abrupt and jerking
* A person may stare at one spot rather than looking at what’s going on around them
* Leg twitching is a big sign for some people. They describe it as their subconscious trying to tell them they want to leave.
* Finger movement, including scratching arms, can often signify distress
* Non-destructive self-harm like slapping, hitting, or punching themselves
* Movements get more jerky and less fluid
* Communication
* Loss of speech/ the ability to communicate verbally
* May not respond to requests or demands, may be unable to interact with or acknowledge other people at all
* May seem angry in their communication, may struggle with communication etiquette, and may seem rude
* Communication may be restricted to pointing or gestures
* Communication may be repeating the same things over and over
* Vocal
* Speech difficulties, including being unable to speak, speaking only a word/few words at a time, or being unable to control tone or volume of voice
* Echolalia
* Vocal stims
* Saying or shouting hurtful or rude things like “shut up” or other phrases that are considered offensive
* Postural & Positional
* Covering ears with hands/arms, covering eyes with hands/arms
* Hiding
* Generally trying to block out or get away from sources of distress
* Attempting to get into quieter/smaller spaces
* Reclusive posture
* May curl up on the ground in some way
* Crouching on the ground or doing a fetal crouch
* If someone suddenly sits down on the ground or in a place that is a bit odd, that’s a major sign that they are in a meltdown and may need help.
* Jaw clenching with total body stillness is a danger sign.
* Erratic Behavior
* Throwing things
* Shouting, cursing, yelling, saying self-derogatory things
* Crying hysterically
* Self-injurious behavior, like hitting oneself
* Erratic movement: frequently changing direction, breaking into sprinting then stopping suddenly, gaze shifting frequently
* Overreaction to basic sensory stimulus
* A visceral rage that is difficult to control
How to Help During a Meltdown
Safety Support
* Protect the person having a meltdown from the police by forming a safety circle around them, forming a physical barrier between the person and police, and calmly explaining to police that the person is autistic (or may be autistic) and they are experiencing a meltdown due to over-stimulus (or may be experiencing what you perceive as a meltdown given your expertise), and you’d like to work together to keep this person safe. This can save lives.
* Explain to police that this person is not ignoring them or being willfully defiant, they just don’t have executive function available to them at the moment.
* Do Not Touch
* Touching a person experiencing a meltdown can make it much worse.
* Touching a person experiencing a meltdown can make them scream or involuntarily do dangerous behavior like hitting, which again, they don’t have control over.
* If a person is located in a dangerous location while having a meltdown, it is better to divert/stop/manage traffic, reduce risk factors, etc, than it is to try and move them.
* Note that autistic people sometimes aren’t sure why touching makes their meltdowns worse and it’s best for supporters to accept this type of information without needing explanations.
* Communication
* Download assistive communication apps on your phone and ask people “Are you having a meltdown” and they can point to yes or no on the screen.
* Alternatively, create a “YES | NO” sign to keep in your pocket. See the Printables section in the Accessible Activism Guide.
* Listen
* If someone shouts, listen to the words they are saying.
* If someone seems aggressive, give them time to speak before responding.
* Remember that difficulty controlling and managing the way the messaging comes out does not invalidate the message.
* Meet Basic Needs
* Food
* Offer food if possible.
* Offer assistance determining what ingredients are in a snack or food item being offered. Food allergies and food sensitivities can be a huge dangerous threat that makes the situation much worse.
* Beverages
* Sometimes a warm beverage is helpful because it’s calming, comforting, and something sensory to focus on. Do not hand a dangerously hot beverage to someone. Instead, wait until the beverage is a safe warm temperature and place it near them or hand it to them.
* Sometimes a beverage that has sugar in it is helpful, especially if the person is experiencing low blood sugar.
* Medical Support
* Knowing where the nearest first aid kit, hospital, or medical emergency personal is can be extremely helpful. Get consent before offering any medical support.
* Model Calmness
* Remain calm but don't try to actively calm the person down.
* Don't get angry at the person during the meltdown as this escalates tensions.
* Do your own regulations and grounding techniques near people having a meltdown because it may help with coregulation. Do not expect or ask people in a meltdown to participate in these actions.
* Narrate what you’re doing and also remember that autistic people may feel too fuzzy to hear you. Move slowly to accommodate heightened states.
Sensory Support
* If possible, offer sensory supports with consent:
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