If someone was to ask me what the most difficult, most crippling thing about having Asperger’s Syndrome was, I would immediately know how to answer them. Although the sensory and OCD problems I have can annoy my friends and family, and the social phobias can hold me back in public, nothing can compare to the violent, unpredictable, and uncontrollable meltdowns.
I’ve noticed that a lot of people, on Twitter and via e-mail, comment that I help them understand their loved ones a little better, understand what happens inside their heads and why they do the things they do. So I wanted to write a post about what I believe to be the hardest part of living with an autistic person.
(You can disagree with that statement if you want, but this is just coming from my own personal experience.)
Meltdowns are emotionally and physically exhausting for both the Aspie and anyone who is conversing with them at the time. My own meltdowns have been happening for as long as I can remember, though I mostly had them to myself in my bedroom as a kid, and it was cast off as me being “a brat” rather than an actual genetic problem with my brain. However, when you move out with friends and you’re still having temper tantrums at eighteen years old, you have to realize there’s a problem somewhere. It’s caused problems for me in relationships and friendships, and I’m sure it’s not only freaked people out, but made them think that I’m some sort of angry, bratty diva who can’t handle the tiniest changes.
I recently read about something online which really helped me understand exactly what happens to my body and mind during one of these meltdowns, because when you’re caught in the heat of the moment, you oddly don’t remember much. It’s called the “Rumble, Rage, Recovery” system. I’m going to try and explain it and go into detail about what I’m thinking and feeling during each stage, partially for those who want to read it and partially to get it off my chest. I don’t find it easy to “talk” about my emotions, but it’s often easier to “write” it.
STAGE #1 – THE “RUMBLE” STAGE
The best way to explain this stage is “sensory upset”. The thing it reminds most people of is a volcano that’s rumbling, just waiting to blow its top. Something happens that sets me off – be it too much chaos or noise around me, over stimulation, a change of schedule, whatever it is that annoys me at that moment. The most usual one is a change of schedule. I’ll receive a phone call from Roomie (because she’s one of the only people I like answering the phone for) letting me know that we have something important to do that evening, or that an emergency has come up. This rearranges my entire evening, and therefore causes a lot of stress and upset, which transfers into annoyance.
At this point, anything will grate on my nerves – people talking to me, light touches, my clothing, text messages, traffic, bright light, loud noises, the sound of someone eating or drinking, over stimulation, too many things happening at once, etc. Every time something interacts with me, I feel another thread of control snapping. That’s the best way I can think of to describe it – little fibers snapping one at a time each time something annoys me. I grit my teeth tighter and tighter, trying to force myself further away from whatever’s annoying me, further into my own world of distractions so that I can try and relax. I snap at people and start to say things that I don’t mean, and the more I’m expected to talk, the more frustrated I get. At this stage, it’s extremely difficult to calm down, and I become a time bomb just waiting for an excuse to go off.
I think at this stage, the best thing to help me avoid going into a full-blown meltdown would be literally to just leave me alone. Maybe I should instigate a safe word, so that when I’m finally ready to talk again or be talked to, I can signal to people around me that I’m okay? If I’m left in complete silence, and not touched or spoken to or prodded or provoked or interrupted in any way, I may be able to keep myself from going into the next stage.
STAGE #2 – THE “RAGE” STAGE
If I don’t manage to calm myself down from the Rumble stage, which is about maybe 30-40% of the time, I go into what they call the Rage stage. This is the meltdown itself, the “temper tantrum”, if you want to call it that. It doesn’t happen immediately – there isn’t a switch that just flicks in my brain, and suddenly I switch from stage one to stage two. It’s quick, but gradual.
The annoyance starts to elicit explosive responses from me, such as snapping, yelling, continuous swearing, or even physical responses (throwing my hands in the air, hitting things, kicking, lashing out, digging my nails into my skin, etc). My vision glazes over and I get “tunnel vision”, and I’m unable to really process my surroundings properly. I lose all emotions, save for anger, rage and frustration. Nothing has consequences and I say things I don’t mean, the most common phrases being swear words or “I don’t care!”. The rage transfers to my arms and legs, and I feel the muscles tense and coil, and that’s when I feel I have to lash out. If I’m in the car, I’ll usually punch and kick the dashboard, or hit the ceiling above me. If I’m at home, I’ll throw things and slam doors and pummel my mattress. I’ll grab my hair and dig my nails into my arms and palms. I’ll scream and yell and make “animal” noises if I’m mad enough.
The whole time, there IS a tiny voice in my head telling me that this is unjustified, that I’m overreacting, and that I’m going to regret it. I want to stop, but I literally can’t control myself. I can’t control the anger. I don’t mean the things I say, but I have to say them, because I’m just so angry I need a way to express it and let it out. Think of it like a valve that’s building pressure behind it, and is trying to let the pressure out as quickly as it can so that it doesn’t burst and do itself damage. I feel like I need to let the steam out, and as fast as possible.
As a kid, I would hit my brother if I got mad at him, and I always had the urge to bite him, but as an adult I’ve never full-on hit anyone (I’ve pushed a little, etc, but not actually hit). That was how I tried to relieve the anger when I was younger – biting. I would bite myself, my pillow, and my brother if he got too close to me. Biting was just the best way to relieve a lot of pressure and steam at once, more so than hitting or kicking. The pressure on my jaw just felt really good, and so I would bite softer objects like my pillow, clothing, bedcovers, whatever was closest to me when I was having a meltdown in an attempt to get it all out. Plus, screaming and yelling into a pillow is the perfect muffler, so it was definitely the preferred method of release for me.
STAGE #3 – THE “RECOVERY” STAGE
Different people with autism have different methods of recovery, or sometimes the recovery method depends on their mood, or how bad the meltdown was. Sometimes I cry and apologize profusely, and beg for forgiveness. Sometimes I sit quietly and stare into space, not really able to talk even though my brain is processing whatever people are saying to me. Most of the time, I’m so exhausted I just want to sleep. The Recovery stage is the stage once the anger and frustration has all been released, and you’re left tired and drained in the aftermath.
Most of the time, I cry and apologize. I’m exhausted and I just want to nap, and I’ll usually lay with my eyes closed and try to rest. I’m aware of how badly I’ve fucked up and I’m always terrified and ashamed. If the meltdown is bad enough and I’m tired enough, I’ll sit and stare into space, and just let my brain process my surroundings whilst inwardly thinking.
If I had to give any advice regarding the Recovery stage… well, it’s difficult, because I believe that, especially in adults with autism but with children too, you should be taught that the behaviour is upsetting to those around you and very hurtful. I don’t believe that it should be “acceptable”, even if everyone knows it can’t be helped. It does happen and it will happen, and you deal with it each time, but it is still important to understand that those meltdowns are upsetting for EVERYONE, and although you can’t help it or stop it from happening, it’s good to have that understanding of its effects on others.
I’d say that, during the first five or ten minutes of Recovery, your Aspie is very tired and upset and sensitive. Save all serious talking for at least fifteen to twenty minutes after the Rage stage breaks – don’t try to talk about how upset the meltdown made you or how it was unjustified or how to make it better next time the second you see the signs of the Recovery stage. Your Aspie will need to rest and allow the final shreds of the Rage to dissipate. However, once the Recovery stage has been noticeable for a while, depending on how he or she reacts, your Aspie may actually be in the perfect mood to talk about what happened, and how you will try to handle it next time, due to how tired and apologetic they may be. Gently try and talk to them about it and see how they react. Of course, I’m no expert, I’m just going by my own experience…
As far as time is concerned, I would say that, on average, my Rumble stage can last anywhere from five to thirty minutes, Rage can last from one to fifteen minutes (depending on intensity and how much energy I have, and how bad the meltdown is), and Recovery anywhere from ten minutes to half an hour.
I hope that this post helped someone out. I think it maybe helped me to get it down onto paper. If I could change one thing about myself, it would be the meltdowns. I’m on anti-anxiety medication to help me avoid the meltdowns as much as possible, but it’s not perfect and they still happen, more so when I’m tired or busy, or in an uncomfortable situation (such as schedule changes, public or over stimulating places, unfamiliar surroundings, etc).
I’ve always had these meltdowns, and I honestly thought I was just a disgusting, horrible, angry person and would be a domestic abuser for the rest of my life. I suppose that’s why realizing there was a reason why I overreacted the way I did, why I had these meltdowns, came as something of a relief. Still, I try not to use it as an excuse, and I’m working every day to find ways that I can nip these meltdowns in the bud, or at least control myself until I can be alone to relieve the stress and let it out without upsetting anyone around me.