A tale of dysregulation & a meltdown
Today I would like to share something with you that has transpired a few days ago. Sharing this experience with others has been a healing experience, both for myself and those I shared it with. As such, I decided to share it here, hoping that healing influence is transferable to a wider—(arguably) less personal—audience.
This is a tale about anxiety, alexithymia, psychosomatization, emotional dysregulation, an autistic meltdown, a consequent shutdown, and the psychological healing that came from the validation I received upon sharing my anguish, and the growth I experienced from how I contextualized the experience.
Changes in routine and uncertainty around a potential meeting with an old friend led me to a meltdown.* During that meltdown—being in a state of extreme dysregulation—I wrote a post in our Embrace ASD Community on Facebook, asking for advice, or perhaps as a way to process my feelings.
A meltdown of the mellow kind, involving an intense response characterized by upsetness and mild despair—rather than the explosive kind of meltdown.
Below is the post I wrote in the group—in all its vulnerable and irrational glory—which is an example of what can happen to an arguably intelligent and fairly well-functioning autistic adult during a meltdown. Note that I am legible and coherent, but clearly not able to regulate my emotions at the moment of writing this.
I’m not feeling well and I would like some advice.
Yesterday and today have been awful. I accidentally kicked Pluto down the basement stairs because I didn’t see him there, and I took the fact that I hurt him pretty hard. Some other things happened and I ended up having a meltdown and shutdown and went to bed because I didn’t want to experience more things going wrong.
Today more stuff is going wrong. I have not been in flow today as my routines keep being interrupted. I’m experiencing dysregulation, agitation, there is miscommunication, and I burned the pizza I had in the oven due to said miscommunication. I’m feeling like everything is too much struggle, and I want to go to bed and stop the day. I’m crying and I would like to talk to Natalie, but she is upstairs with patients.
Underlying all of this is the stress around a friend who went to Bermuda and was going to stop over in Toronto to meet me. He left me with a lot of uncertainty about when, where, and how, or even if he is coming at all, considering the extreme weather. Now 2 hours ago he sent me a message saying he landed, and to meet him at the Homewood Suites at Toronto airport.
I will have to walk to the railway station, but I’ve never made use of that before in Canada, and don’t know where to go to and what to do. I don’t know how to get to the Homewood Suites. All of this feels too challenging to deal with. I don’t want to go, but I don’t want to disappoint the friend, and feel guilty and inadequate later. Actually, I already feel inadequate. I want the day to stop.
Not sure if you can offer advice, or if I just needed to write all this down to help me process my emotions.
It’s interesting to re-read this now, and the statement about the burned pizza makes me chuckle. Obviously, that was not the epitome of disaster, and yet due to the circumstances, it added enough weight for me to mention it in my message.
The next day
The response to my post was overwhelmingly positive, and ultimately conducive to my mental health, as I didn’t feel alone in this, and just knowing that my experience is relatable to other autistic people was a powerful agent to counteract my feelings of inadequacy.
So below is what I posted the next day, which also explains more about why I became so dysregulated, the relevance of alexithymia, and what was so healing about the responses I received to my post.
I want to thank everyone who responded to my desperate plea of yestertime (yesterday to be exact).
I did more crying this morning and got it all out of my system. I think I will have a few dry days at least. You should have seen the Kleenex effigies I erected in the last few days.
It’s interesting though, how powerful my alexithymia seems to be at times. Emotions build up inside of me without me necessarily knowing it, and ultimately I release it all at once. Once in a while, I am reminded of how sensitive I actually am.
Anyway, I would like to offer you an update of what happened, and a few personal thoughts which may help you somehow. And finally, I also want to let you know what about your responses helped me the most, figuring that might also be useful information.
After my post, Natalie’s assistant generated the route I had to take using Google Maps, and told me it would take 1 hour and 40 minutes as well as several changes of trains, which she said would be too daunting of an undertaking even for her, and she knows the area (she is autistic herself though). The easiest way would be to go by car, but I cannot drive. I didn’t want to take an Uber or taxi either, and sit in a car with a stranger, spend a lot of money, as well as an hour to get there, and the same back. So I realized then it’s just too much trouble, and I better call it off.
Now calmed down, I read my friend’s message again. He just landed in Toronto (now three hours prior) and was going to the hotel. He was tired and would give me a time later. He brought his young son who was on a certain sleeping schedule, so he couldn’t give me any certainty. I realized there was nothing to do yet anyway, since he had yet to offer me a time. I told him all of it is too much trouble for me, and asked him whether he had any alternatives. Maybe he could take the Uber? I didn’t suggest that, because I wasn’t too keen on him driving to me (and Natalie). At this point, I was absolutely exhausted and was in shutdown. I did not want any social contact.
I checked my messages several more times that day, but he never responded. I figured maybe he didn’t have access to the Internet. Eventually, it was after 8 PM, which felt too late even for him to come by. I was very relieved we didn’t end up meeting and hanging out.
This morning, I check my messages and see that he responded to me at 1:47 AM, saying it’s indeed to much trouble and time, and it’s too late now anyway. He said he indeed didn’t have access to Wifi until now, and said all of this was unfortunate, but he figured he will come back to Toronto sometime and get a hotel in the city, and we can hang out in the center.
So as it turns out, we never got to meet, and it feels the extreme stress I have been feeling was all for nothing. I’m not angry though—just relieved. Natalie says that might be my alexithymia talking. Admittedly, it may be a defense mechanism, and deep down—outside of my own awareness—I am angry at my friend. That would be a healthy response, but either way, I don’t feel angry.
It also amazes me how emotionally crippled and dysfunctional I became due to having my routines disturbed, as well as so much uncertainty around meeting this friend. From the very beginning, there was a lack of certainty.
All of this actually started in December. The friend told me he would come to visit me after going to Bermuda. I thought he was joking at first. Not sure whether he was, I asked him when, and he said February. It’s not a joke then.
Over January and then early February my anxiety slowly builds. Around the 20th I start to feel relieved, perhaps, because I figure he is not coming after all. And then he sends me a message that he is coming on the 28th. My stress peaks.
Okay, so I know he is certainly coming now. For how long though? Will he stay over with his wife and possibly their child? Or will they get a hotel? Stressed out of my mind, I talk to Natalie’s son about it. He suggests perhaps my friend is just stopping over, and I should ask him.
So I ask him, what are your plans? He tells me he is stopping over for 19 hours and wants to meet me. I still don’t have certainty, however, as I have no idea where and when exactly he wants to meet, nor did I even know if he is specifically stopping in Toronto to meet me, or that he has to change a flight there anyway. Somehow it made a difference for me to know exactly what was going to happen, and why.
It turns out it was the former, and we never got to meet anyway. In hindsight, it’s almost puzzling to me what the big deal was. Why do I experience so much anxiety and fear around meeting a friend? Curious.
Once more, thank you so much for all your responses. Interestingly, I believe earlier yesterday I asked Natalie why patients often calm down when they are being validated; why does it matter whether someone understands your feelings or the situation you are in? And why do practical solutions not generally calm us down when we are in a dysregulated state?
Well, I got a perfect demonstration of the power of validation later that day, when I read your comments. For some reason, particularly the comments that stated “I understand”, “This resonates with me”, and “Thank you for posting this” had a powerful effect on me. It made me realize, validation makes you feel like you are not alone. And really, in a dysregulated state, feeling like you have to carry the weight of the world alone can be devastating. Years ago that very feeling almost cost me my life.
Exhausted as I still am from yesterday, I had to laugh today about some of the things I stated in my post yesterday. My pizza burned! Of course, that is not the end of the world. It’s just that I was so anxious, stressed, and felt the pressure of things going wrong, that even the most minor things felt almost catastrophic, together with everything else.
What I did yesterday, I never did before. I never made a public display out of my emotions (if you can call it that). I always dump my negative emotions into my body, where it somatizes and sits on my chest. I don’t know why I wrote that post yesterday. Natalie suggested perhaps it’s my alexithymia slowly resolving, or my emotions untangling. Or maybe it’s that I feel safe in the group. Probably both, which made it possible that I can speak about some of my feelings and emotions publicly. It’s a big step for me to be able to do that.
I did feel ashamed as well, but your messages saying that you’ve gone through it yourself, and that you appreciate me talking about it, took away my shame. This morning I still felt inadequate, but those feelings have gone now as well. Sometimes it’s very challenging being autistic, while other times I am glad the way I am—particularly when I am calm and regulated, of course.
I hope that by identifying our feelings more readily, talking about them, and receiving validation, we are well on our journey of healing, of growth, and potentially, of decreasing alexithymia. I believe quite a few negative aspects often attributed to autism are actually due to alexithymia, and if we can quell this kryptonite.
Ultimately, hopefully, we will experience more moments where we are glad to be who we are, and are able to appreciate our beauty and depth. I’m still on that journey, and I must sound a little dramatic and sentimental, but I’m glad you play a role in my journey.
Thank you, everyone.
So that’s it. Are you healed yet?
Obviously, it’s not as simple as reading a single essay on an autistic person’s experience of a meltdown. However, I hope me sharing my experience of a meltdown—something I have never done before—is somehow conducive to your mental health, or has at the very least been informative.
Let my meltdown have some positive influence on the world! If the world rejects it, I might find a way to weaponize it instead.
If this helped you, I would love to hear how.
Consider leaving a comment below.