The M Word: We need to talk about adult autistic meltdowns

I’m sitting at my desk at work.

It’s just after 4pm on a Thursday in the second week of August in 2016. The daylight is fading and the sky is slowly turning purple with flecks of pink. I’m becoming more aware of the fluorescent light above me and the hum of the air conditioning system continues to pulse right through me as it has all day. My heart rate rises and I start to sweat.

The sound of multiple conversations being had around me in the open plan office fills my head and blocks my thoughts. I start to lose focus. My mouth is dry but I’m too busy to get up and get a drink. Too busy to stop. Can’t get out of the chair.

Email alerts in the bottom corner of my screen start flooding in and my phone flashes continuously with text messages. More emails. I can’t keep up. Heart rate rises again.

My phone rings. She wants to know what I think about someone’s email. I haven’t read it. I have no idea what to say. I can’t think. I can’t understand what she wants me to do.

The fluorescent light makes me feel like I’ve been transported to another dimension and I didn’t give permission. Where is my water bottle?! Oh crap she’s still talking and I have no idea what she just said. The call ends and the emails keep coming. It’s getting darker outside and even brighter inside. I can’t breathe. Tears well up in my eyes and I swallow hard, desperately trying to get rid of them but I can’t. The room is spinning and through the tears flowing down my face, the glare from my monitor burns my eyes. Laughter. Shouts over the partition. My heart is pounding and I’ve completely lost control. Can’t stop crying. Can’t think.

Someone puts their arm around me and asks what’s wrong. I can’t get a word out. She hands me my water bottle and takes me outside for a walk. The fresh, cool air on the tears pouring down my cheeks makes me feel like I’ve just broken the surface of the bottomless pit I was drowning in.

I’m exhausted.

This is a real life memory of an autistic meltdown I had at work last year.

A meltdown is not a word you use to describe a bad day. It’s not a panic attack. It’s not a mental health episode. It’s not a tantrum and it’s not something a small child does several times a day- unless of course that child is autistic.

It is the complete loss of emotional control experienced by an autistic person. It doesn’t last long but once triggered, there’s no stopping it. Meltdowns are emotional avalanches that run their course whether you or the autistic person having it likes it or not. They can happen at anytime and can be caused by a number of factors including: environmental stimuli, stress, uncertainty, rapid and impactful change and much more. It really depends on the individual.

Meltdowns are a fact of autistic life. Telling an autistic person to up their resilience isn’t helpful. That can actually make it worse. I can only speak for myself, but when I have a meltdown or when I can feel myself heading for one, I get very worried about the impact on other people. Am I disturbing them? Am I making them feel uncomfortable? Are the going to view me as immature or irrational? Will this hurt my career prospects? These are the thoughts that are spiralling through my mind. They fuel my anxiety and speed up that loss of control.

You might think that the consequences of these thoughts should be enough of a deterrent to head off the meltdown but that’s just not how they work.

Meltdowns are a horrible thing to experience. No matter how uncomfortable, distressed or inconvenienced you may feel, the autistic person having the meltdown is suffering on a whole other level. I work damn hard to keep them at bay and there are some things you can do to help too.

I can feel a meltdown coming before it hits. I experience a pre-meltdown phase of sorts when my heart rate quickens and it becomes hard to breathe. In me, it’s right before the tears well up in my eyes and the room starts to spin. If I can remove myself from the overwhelming situation or place during the pre-meltdown phase, there’s a good chance I can put the brakes on it. The tears and the spinning room is the trigger point for me- the the point at which the meltdown is really happening.

You can help me during the pre-meltdown phase by being someone I can say “Hey, I feel a meltdown coming” to. Listen to what I’m saying, believe me and help me remove myself from the situation or place. It might mean going outside with me for a walk or telling me it’s ok to finish out the day from home. Again, it really depends on the person. Just being someone that we can flag that with, goes a very long way.

You can also help prevent them in the first place by helping us to avoid triggering situations. There’s a reason why I don’t go to the movies on a Friday night, I send my husband to the supermarket alone and I do almost all of my shopping online and the parcels go to a PO box that my husband checks. I try to avoid crowded public spaces because they’re prone to overwhelming stimuli and tricky to navigate social situations. Same goes for large functions like weddings and end of year parties. I’ll usually leave these events early to prevent the possibility of a meltdown by having some quiet time. I retreat to recharge. You can help me by not pressuring me into going to an event and not judging me for leaving earlier than you think I should. My need for recharge time is not an insult and it’s not even about you.

Some of these places and situations are not always avoidable. Public transport, open plan offices, medical waiting rooms are all examples of unavoidable places ripe for a meltdown. I cope by playing escape room puzzles on my phone or by listening to music through over ear noise cancelling headphones. If you see someone with headphones on, unless it’s an emergency, please leave them be. They might just need to shut the world out for a little while to cope. If you see someone engrossed in their mobile device, don’t whine or make snarky comments about millennials and their phones. It happened to me once at a large event and it made me feel marginalised. At least I made an effort and showed up as best I could. My coping mechanisms are about me and me only. They are not an opportunity for you to be rude.

That day in August last year is a prime example of what a meltdown looks and feels like to me. It’s also a great example of how to help someone through a meltdown. Once we were outside, my friend asked me to talk her through how I was feeling while we walked laps of the building. She just listened to me. When I was finished, she asked me if I was ready to go back in and I was. I went inside and I got on the phone to my amazing manager at the time and talked him through what I was feeling and together we made a plan. I came in the next day and armed with that plan, was thinking clearer than ever and went on to kick some serious work goals .

I wish meltdowns weren’t a thing but they are and this is how I live with them. With the support of some amazing people, they’ve become less frequent and less severe over time enabling me to focus on doing what I do best.