Autistic Adults Share What Could Have Helped Them During Meltdowns as Kids
Because I have two children with disabilities, several of my friends either have disabilities or have children with disabilities, too. While there is no replacing the connections I have with other parents, I’ve found myself relying more and more on the advice of my disabled friends.
For example, my middle child has cerebral palsy, and it is my friends with cerebral palsy I go to for advice when it comes to helping my daughter and talking about disability-related issues. I also have a good friend on the autism spectrum, and he has been my go to resource for anything autism-related. I believe their experiences, and being actually disabled, make them the experts. I have much to learn from them, and when I listen to their advice, I become a better parent to my kids.
Recently, I listened to a conversation regarding autistic kids and meltdowns. Parents were discussing the best way to help their kids. My question was, “Have any of you asked an autistic person what helped them as kids and what helps them now?” This reminded me once again: we should be listening to the voices of autistic adults who have “been there, done that” and who have solid advice to offer, given their personal experiences.
So we reached out to our autism community and I also reached out to my friend Carlyle, who runs an autism support group and could help me make more connections with other autistic adults. We asked the question, “Autistic adults, what advice would you give to parents when it comes to meltdowns? What was helpful for you? What did you need?”
These were their responses:
1. “Please don’t set your child up for failure and then punish their resulting behavior. (Like putting them in a situation where they won’t be comfortable and expecting them to act ‘normal’). They’re trying to communicate with you. Anger, discomfort, frustration, pain, there’s something going on with your kid that warrants attention and aid, not punishment. There is some combination of events that triggered such a reaction in your child and they need help to process their emotions and the physical response those entail, along with the external sensory stimuli. Help them to a cool, dark, quiet space (or otherwise limit sensory input as much as possible with headphones, dark glasses, etc.), make sure they’re safe and not a danger to themselves or others, and let them process. When they’re ready, talk to them about what happened in a calm and rational way and work together to try to come up with creative solutions to hopefully prevent or reduce the impact the next time a similar situation occurs. And let them stim. It’s a useful coping mechanism for us.” — Vanessa B.
2. “Try to see what happened before the meltdown. Which situations are too much? What come before the meltdown? What brings the meltdown? That’s the best so you learn to help before and prevent before — and then train for these situations! Not prevent forever, but [practice] is necessary. When a meltdown happens, be calm, act normal, make no big thing, no ‘ohmygoood’ or so, only let it happen, try to be calm… Bring the person out of the situation, if possible, in a calm room or calm edge. Some like a blanket or something to cover their head and/or body. If you are in a situation where there is no calm place, stand in front [of them], make a wall with your body, and let the meltdown [happen]. Stay calm and act normal, so the person-in-meltdown knows you are trustworthy so the brain of the autistic person can calm down.” — Martina M.
3. “Leave a situation before meltdown mode hits. One thing I do when I feel like I’m about to melt down is leave the area to a calmer one.” — Ashley W.
4. “With me at least there is a difference with an ‘overstimulation episode’ and a meltdown. The first one is more unpredictable and is based on how well I can keep my focus on one thing, the other is when I’m mad and more predictable as far as when it will happen. Both look basically the same on the outside but are very different.” — Zachary D.
5. “Don’t tell them they have to become more tolerant or that they are ruining things, as it’s completely uncontrollable and very much like me telling you to stop hearing, or to stop feeling extreme pain when your hand is pressed against a burning radiator. It’s not something they can do anything about and chances are they already feel awful or embarrassed about it already! If they need to get away from a trigger or have some space, please let them as it may be the only way to make things borderline tolerable — suppressing it will end up with a bigger explosion later, and trust me that isn’t good! Listen to them and let them avoid triggers. Think of people as plants. If a plant isn’t growing as much as we would like, we don’t shout at it to change — we change their environment and attend to their physiological needs so they have the opportunity to grow. Autistic people are no different.” — Ruby W.
6. “[Keep] sticky notes in your purse to cover the automatic flush sensors! [This can ] keep meltdowns from happening because keeping the toilet from flushing while they are on it is a super power!” — Casey H.
7. “A lot of my meltdowns are due to my seeing my autism in a bad light. Ask if they want to do ASD studies. When I started with that I felt good about my autism instead of bad.” — Zachary D.
8. “Talking and disciplining through a meltdown isn’t helpful. My mom didn’t know I was autistic and would spank and try to discipline me through it to stop said meltdown. It just made everything escalate and last for hours. A meltdown is not a tantrum. It’s not something we can control. What’s helpful is just sitting quietly and waiting for us to work through it. No talking. Make sure we are safe, but allow us to work through it. You cannot force us out of a meltdown. It only makes it hurt more. I think something that neurotypicals don’t understand is that meltdowns hurt. Physically and emotionally. When it is over and we have had time to process through it, then is the time to try to talk through what happened and how we can work to avoid the next one/give our bodies what we need before it escalates. A quiet place and a weighted blanket are my go-tos as an adult. Because I know what to look for to prevent an actual full-out meltdown now, I don’t really have them anymore. I more have shutdowns and burn outs instead. This is just my personal experience. Everyone is different. But this is what I would’ve needed as a kid and still need as an adult.” – Aime C.
9. “Give someone a break and let them process, find a place that is not stimulating, as overstimulation can cause it, space and time to process with a walk is helpful as is keeping it in perspective. Haven’t had one this year but had a few a year until shortly before I turned 34 and I am considered stage one, so it does happen regardless of age, it is just how to deal with it. I had daily and sometimes hourly meltdowns as a preteen, but I don’t remember much of those times other than I was aggressive in how I dealt with it and am now able to do what works best quickly.” — Ian B.
10. “Understanding and empathy. If possible, ask your child (or adult) in a calm tone what they do/don’t need during a meltdown. Everyone is different but all meltdowns are stressful, exhausting, and can feel terrifying, plus be mentally and physically painful. My own kids are verbally limited but I’ve learned, and they’ve shown me over time and through trial and error, what helps. My son likes space and time away from others and needs to physically vent out during a meltdown. My daughter likes to be alone in a dark space but often uses videos on her iPad to refocus. During a bad or long meltdown, she often needs firm hugs, pressure stims, and soft words reminding her she’s safe, it’s OK to cry or scream, and we are there when she’s ready for us. More than anything, for myself and my kids, we need to not be punished, minimized, or treated in a condescending or patronizing manner as a result of a meltdown. We meltdown when we’re dysregulated or overstimulated so, after receiving kindness and love, what really helps in my household is to evaluate what’s on everyone’s plates and adjust or lighten the load — adding extra time for stims and self-care as a means to build up ‘spoons.’” — Shannon J.
11. “I’ve always found it helpful to plan ahead for the things you can control and make efforts to keep anxiety to a minimum. I have a habit of fighting through my social anxiety, but I try to pick what situations are worth the fight. I also work out strategies ahead of time, like knowing how and where I can escape to a quiet place and knowing who I can grab for support. These things are important. As a kid, it would have been immensely helpful if family get togethers, for example, had a designated quiet room I could hide in.” — Carlyle K.
Are you an autistic adult? What would you add?
Getty image by ErikaMitchell