I was just diagnosed with ASD (Autism Spectrum Disorder) in December of 2022, a few weeks before my 58th birthday. I wrote about what caused me to seek this diagnosis here. I’m rather new at this stuff, and I’ll probably be blogging quite a bit about various aspects of it as I go along, reading and learning and wondering what this means for me. I suspect that quite a few other people are experiencing a similar thing.
Check out my autism category for a list of relevant blog posts, and never forget that 1) I’m just one person, writing about my personal experiences with a thing I only just learned I had. 2) No two people on the spectrum are alike. 3) I am not a medical or mental health professional. 4) I’m not attempting to write a one size fits all autism advice column.
My whole life, I’ve had these meltdowns, where I cry hysterically, act irrationally, and feel completely out of control. The worst of these incidents can last for hours. They are exhausting and humiliating. I’m sure that those who witness them feel scared, helpless, and annoyed by them. They have caused me to lose a few friends, become estranged from loved ones, and I’m usually just on the brink of getting fired.
It’s only natural that people mistake these meltdowns for tantrums. They look similar at first glance. Because of that mistake, people often think that I’m being manipulative, because tantrums are all about getting your way, aren’t they? I even had one misguided therapist tell me that I was “stuck in my trauma” and that I “hadn’t matured beyond the age of 13.” I’ve also been called an “entitled little brat” and a “drama queen who is begging for attention.”
These misconceptions only add to my stress and frustration, and that, in turn, increases the intensity of my meltdowns. I try so hard to keep it together. It seems so easy for everyone else. I can probably count the number of meltdowns that I’ve seen in others on one hand. And yet here I am with nearly 6 decades of meltdowns under my belt and no discernable end in sight. That doesn’t exactly improve my self-esteem.
The truth is that I’m devoid of any sort of manipulative agenda. During a meltdown, I actually want nothing more than to crawl under a rock and hide from the employer/coworker/horrified relative/random stranger that has borne witness to my acting completely and utterly unhinged. I have just as many meltdowns when no one else is around, by the way. No one throws tantrums in an empty room.
Afterward I feel drained and usually lose a day to recovering. It’s mortifying, and until quite recently, it has been utterly unexplainable. I constantly asked myself what the hell is wrong with me.
I’ve been told by many people that I should grow up, toughen up, and not be so sensitive. On numerous occasions I’ve been informed that I should snap out of it and stop taking things so personally. I’ve been called whiny, needy, weak, irrational, and a victim.
The worst one? When someone I love says, “For God’s sake, Barb, what is your problem? You’re overreacting. You’re acting like a child.”
I always knew that immaturity or manipulation had absolutely nothing to do with it. But I could never explain it to myself, so I couldn’t convince anyone else. Being so badly misperceived, of course, added to my frustration.
Because I have been incapable of turning myself into a more “normal” person, despite my best efforts, I’ve always felt like these meltdowns, along with all my other odd qualities, were my fault. I’ve felt like I was broken and needed to be fixed. And yet, as smart as I am, I couldn’t make any headway at all in those repairs, even after decades of therapy. I’ll never be accused of being level-headed. And that level state is all I’ve ever really wanted.
So what are these meltdowns like for me? The early warning signals are that I’m usually tired and quite often under a great deal of stress. I start to become more and more convinced that my mask of normalcy is slipping off, and I’m losing the strength to keep it in place.
I hope that I’ll become more adept at spotting these early warning signs, because at this stage there’s still a chance to avert the crisis. I can take myself to a place that’s less stimulating. Fewer people, dimmer lights, and less noise are all a big help. I can surround myself with soft, comforting things. A nap can be crucial.
But if there’s no opportunity to take myself away from the overwhelming overstimulation, or if I’m under a great deal of social pressure or stress, or if there’s a sudden change that makes me feel like I’m out of control, I can’t always compensate. If I feel as if I’m being extremely misunderstood and that explaining myself is really important, I reach a tipping point.
If I can’t take myself out of these situations, I sometimes think I can abort the meltdown by shutting down entirely. I stop speaking or moving. I try to get people to stop talking to me. This is not me being hurtful or rude or manipulative. It’s me trying to survive. At this point I’m hoping that shutting down will give me the opportunity to recalibrate so that I can cope. But this rarely works.
On a regular basis, I have to function under a lot of tension and exertion in order to keep up this façade of normalcy, but before a meltdown I can feel all of it starting to churn inside me like magma beneath the earth’s crust. There’s usually an exact moment that becomes just too much. I am unable to hold all this stuff inside anymore, and I erupt.
That “last straw” can be the pure frustration of trying unsuccessfully to explain myself, sensory overload, or big feelings that I can’t seem to adequately express. It can be someone verifying that they don’t think I’m behaving normally, or that they want me to change, or I get the message that I’m just not good enough as is. It might be that I’m feeling attacked, or that someone who has a certain level of control over me is not being rational.
I’m really grateful that my meltdowns have never resulted in violence or self-harm as they do for some people. But at this stage, the logical part of my brain isn’t working at all. I’m in pure survival mode. I feel like it’s the end of the world. It is impossible to reason with me at this point, and I’ve been known to say really hurtful things to anyone who tries. And that makes the meltdown even worse, because I then become terrified that my loved one will leave me or stop loving me, or that I’ll be considered crazy and wind up in an institution.
It may not look like it from the outside, but by now the inner me is curled up in the fetal position, in order to protect the emotional equivalent of my head and stomach. Usually my ears are ringing, and I can no longer hear what anyone is saying. I’m crying really hard, but the inner me is screaming in terror and wanting to call for help, but doesn’t know how to form the words.
Now the emotional storm is raging, and there’s nothing that can be done to stop it. Trying to reason with me at this point makes me feel even more out of control. The only solution is time.
Eventually the exhaustion becomes too much and I start winding down. It usually takes a day for me to recover. I miss work. I cancel plans. I sleep.
Often, people don’t understand my need for recovery after a meltdown, and they expect me to carry on with plans or errands or work or what have you. They figure it’s all over once I’ve stopped crying.
It’s bad enough that I’m humiliated and exhausted and I’m worried about how to mend hurt feelings, which is something I’ve never been very good at. But now you want to bully me to go straight into high-tension normal-acting mode on top of that, while my nose is still red and my face is all swollen and my head is throbbing?
If I’m forced to do those things too soon, I often start crying again. And then I’m even more humiliated. Why can’t I act like everyone else does?
Oddly enough, though, after I’ve wound down, I feel cleansed. It as though I’ve discharged a massive amount of negative energy and compressed stress and pressure. I kind of feel like a wet dishrag, but a clean one. My emotional regulation system has been reset.
Now that I have official proof that I’m autistic, I’m hoping to get connected with services that will teach me some coping skills. I’m already doing a lot of reading on the subject. And I’m fortunate that Dear Husband is open to talking about it.
Even though I still believe that these meltdowns can’t be stopped once they’re beyond the tipping point, I do think there are things that could be done to make them less horrific, if there’s someone with me whom I really trust when they occur.
This is definitely not the time to judge me or tell me I’m crazy. It’s not the time to call me names. It’s not the time to pressure me to grow up or snap out of it. Those things simply add fuel to the fire.
Every autistic person is different, but for me, what would help is someone hugging me really tight. (Preferably from behind so I can still feel like there’s an escape route if I need one. Making me the little spoon would be ideal.) And it would be nice if that person could calmly tell me that everything is going to be okay, and that they still love me and that I’m safe.
I’m thinking of keeping a sort of meltdown diary. I could look for patterns. What triggers me? What was the tipping point? Was I tired? Overstimulated? Confused? Frustrated? Was I feeling like I couldn’t express myself, or that I was not being heard? How could I have handled the situation better? What did help? What made things worse? What was I thinking during the episode? Did having something soft to hold onto make a difference?
Oddly, even without having learned any meltdown-related coping skills yet, I have noticed a marked decrease in my meltdowns of late, and when I do have one, it’s a lot less intense. My working theory is that a lot of my distress was caused not only by my utter frustration at being misunderstood and my total exhaustion from trying and failing to be something that I’m not. I think a good portion of it was my deep anxiety about not knowing why this happens to me when it doesn’t seem to happen to anyone else. I makes me feel so out of control. It’s like I’m handcuffed to a roller coaster, and I can’t get off.
But now I know I’m autistic. I’m still me, and I’m still riding that roller coaster, but the handcuffs are off. In addition, I have a greater understanding of how this roller coaster functions. Knowledge makes me feel a bit less powerless.
I’m not sure that all my loved ones get how epic this change is for me. I’m not saying I’m cured. In fact, I’m comfortable with my newly discovered neurodiversity. A cure is not necessary (or even possible). Coping skills are.
I’m definitely not saying I’ll never have a meltdown again. Far from it. I’m just saying that, from my perspective, even though my coping skills are not where I’d like them to be quite yet, on some level I know that everything is going to be okay.
That’s a new feeling for me. I’ll take it.
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