How to Avoid a Meltdown… According to My Therapist

As I mentioned in an earlier blog post, I have been having near daily meltdowns since I returned to work about two months ago. At first, we thought maybe it was just due to the increased stress from the pandemic and from being sick with COVID-19 in March.

That didn’t really sit right with me, though. I knew that wasn’t the whole picture. I have been dealing with health concerns for the last 12 years with my autoimmune conditions. My meltdowns used to happen on occasion. Maybe once or twice a month, and sometimes with specific triggers (like an important social engagement I had to get dressed up for). I’ve done insane things in the middle of meltdowns before. At their extremes, I’ve thrown a heavy chair down two flights of stairs and ripped a door off it’s frame. But these incidents were pretty spread out. Daily meltdowns is completely new territory for me.

About halfway through the discussion with my therapist, the real reason for the meltdowns occurred to me. It was just stress. It was grief. I lost my cat suddenly a few months ago. Four months ago, to be exact. Four months and I still cry almost every day. He was my baby since the very day he was born and has been by my side my entire adult life. I still don’t know what my life looks like without him.

I never realized how much comfort he actually gave me until now. Losing him has thrown me into a state of chaos. I seem to have lost the ability to regulate myself and recover from being over-stimulated. All I used to need was some quiet alone-time. Now, I find myself unraveling with no way to stop it. Sometimes I will be unraveling without even being aware. My conscious brain will think I feel okay, and that I actually had a good day at work. Then I get home and completely go to pieces because I trip over a stray flip flop, accidentally bump my elbow on the door knob, or the blinds are making a horrible flapping sound with the fan on. In fact, I’m on the brink right now because my upstairs neighbors are watching movie so loud it can be heard from two buildings away (they do this on the regular—honestly never had neighbors more oblivious or disrespectful. Random passersby will even comment on how loud it is when they are out for a walk around the block).

According to my therapist, I need to find ways to help regulate myself throughout the day. One of the things she has asked me to do is a sensory scan. What am I hearing? What am I seeing? What am I smelling? What am I tasting? What am I feeling? I am supposed to go through each sense and just notice what I am experiencing. This will help get me in the present moment and will help ground me.

Another little exercise she has asked me to try is deep breathing. Since I’ve been trying to pay attention to my breathing I’ve actually noticed I tend to hold my breath a LOT. When I start getting tense at work, I just stop breathing. I’ve started combing those two exercises together, so whenever I notice myself not breathing, I make sure to breathe and then I do the sensory scan.

I’m supposed to give it a few weeks with these new techniques to see if things improve, but I’ve already noticed a difference. The only other thing I’ve changed is what I do after work. I’ve been taking more baths and experimenting with different bath bombs (not easy when you can smell things from a mile away). I’ve managed to actually find a few bath bombs with a suuuper light fragrance that doesn’t make me sick. With my highly sensitive nose, I can’t get within a mile of a store like Lush or Bath & Body a Works, so I’ve taken a few leaps of faith online and amazingly it’s worked out for me.

And on that note, I am going to go take a bath before bed with a different kind of bath bombs. I’m out of all my usuals. Cross your fingers for me—I need something relaxing right now and I’m not sure if “cotton candy” is something I can tolerate on my skin for 24 hours.

My Undiagnosed Autism in Elementary School

I think the strangest thing about being diagnosed as an adult is looking back at my childhood and finally having an explanation for everything. As a kid, I never belonged. Anywhere. I had a few friends, but only outside of school. Looking back, every part of my life is a classic example of autistic traits in girls. 

I think back to my years in elementary school and compare myself to the kids in my class who were a part of the special ed program. It makes me angry thinking about it. I have two main thoughts when I think about those kids:

  1. It’s amazing that none of my teachers ever figured out that I was on the spectrum.
  2. Those kids were not treated well, and certainly did not have the equal access legally due to them under the ADA.

The kid I think about the most is a boy named Zachary. Third grade was the very first time I ever thought to myself “Am I Autistic?” I never voiced the question out loud, but it always floated there under the surface. It was Zachary who made me wonder.

I’ve been stimming my entire life. My most common stim is scratching my head. It’s the only way I can focus on anything. In school, focus is obviously required for the entire day. This meant I spent the whole school day with my arm raised high, my elbow bent, and my fingernails buried in my scalp. I always knew it was weird and different. My biggest fear was someone thinking I had headlice because I always scratched my head. I never met anyone else that scratched their head. Never. Until I met Zachary.

Zachary was different. Like many kids with ASD, he also had ADHD. The kids in my class didn’t think of Zachary as “the Autistic kid.” They thought of Zachary as “the bad kid.” This is the part that makes me really angry. Because, I believe, due the teachers’ lack of knowledge and lack of ability to constructively help, it was common practice at my school to have kids with ASD and ADHD sit far away from everyone else. Zachary was not the only one. However, it was also common practice to punish kids by making them sit far away from everyone else, relegated to a lonely desk in the corner of the room.

So, through no fault of his own, Zachary became “the bad kid” because he was always stuck at the punishment desk. Zachary wasn’t really deficient. He was able to spend all day with the class, every day, except for a short period of time one day per week. He was just as smart as everyone else, but he was just different. He also happened to spend all day, every day, with his arm raised high, elbow bent, fingernails buried in his scalp.

I always knew I was different. But it wasn’t until I met Zachary that I saw some of my own traits reflected back at me. Zachary sat at the punishment desk because the teachers made him. Because of his ADHD, Zachary’s behaviors could be distracting to the other kids. I, however, had the opposite problem. Because of my undiagnosed Autism and hypersensitivity (especially to sound), I found other kids distracting. The whispering, the rustling of papers, the scratching of their pencils, the shaking and squeaking of the desk and chair whenever they moved, turned, wrote, erased, wiggled, sneezed.

I was always the teacher’s pet. Obsessed with following rules and being “the good kid.” Always way ahead of my peers in every subject, it was easy for my elementary school teachers to love me. So, one day, I approached my teacher and told her I was having a really hard time working with the other kids in my group and asked her if I could please sit alone. And that’s how I, like Zachary, was relegated to the punishment desk. But I loved it. I could finally do my schoolwork freely.

I didn’t really think much of my new seating arrangement until another faculty member stopped by the classroom to talk to my teacher. Because I was such a teacher’s pet, many of the other teachers knew me. So, when the other faculty member walked into the classroom, and saw me sitting by myself in the corner, she did a double take. She looked at me, with confusion all over face, and said “What did you do??” I will never forget the tone of her voice, and the way she asked the question. She was shocked. Everyone could hear her. I replied “Oh, nothing. I just like sitting by myself.” The truth of the punishment desk was made crystal clear that day. It wasn’t long after that I resigned myself to sitting in a group of four again.

That wasn’t the only time I chose punishment in school. Every Friday afternoon was “free time.” We could go do any activity we wanted. Games outside, movies in one classroom, or games inside another classroom. The “bad kids” didn’t have a choice. They went to study hall, to finish missed homework assignments or do extra work in subject they were behind on. What did I choose to do every week? I chose study hall because I didn’t want to be forced to socialize. Recess and lunch were overwhelming enough. What made it even stranger is that I never had homework or studying to do. The only other option in study hall was to do what kids who were there because they were in trouble did: copy line by line from an encyclopedia. Well, it was a win-win for me. I didn’t have to socialize, and I sure learned a lot about bees. 

It’s amazing that none of my teachers figured it out. It’s been on my mind every day since my diagnosis. My mind is heavy with every new dot, trait, and behavior I connect, but my heart is heavier. My heart is heavy for Zachary and all the others. What they endured was not right. What hurts even more is knowing that those on the spectrum still face these kinds of challenges. While some progress has been made in the decades since I left elementary school, it’s not enough. No one should have to sit at a punishment desk. Those kids were not treated well.

Good Vibes.

There are about twelve subjects on my mind today. All of them are related to Autism and how it is impacting my life. There are a lot of large, looming questions I need to answer that are just floating around my head on a loop. But, I don’t have any answers for those yet. So, for now, I will have to satisfy my need to share with you by discussing something both mundane and critically important: earplugs.

Today was expected to be a crazy day at work, so it was the first day I brought my new earplugs with me. I recently bought those popular Vibes earplugs that allow you to hear everything, but just at a less intense volume. I’ve been messing with them for a few days now and finally found a good fit. (Apparently, my right ear is a size medium and my left ear is a size small. Who would have guessed one person’s ears could be such different sizes? No wonder I have a hard time finding comfortable headphones.)

One of the things I struggle with at work is the noise around me. I run a smoothie and ice cream shop. Right off the bat, you’re probably going “Oh, the blenders! Yeah, I’d need earplugs too.” Yes, they definitely helped with the blenders. But—that’s not why I brought them. The hardest thing for me to do at work is have a conversation, especially when there is as much going on as there is right now. I will be having an important conversation with my coworker about the new menu items, while the owner is having a conversation with a loyal group of customers, while another customer is having a conversation via FaceTime with someone else, and two other coworkers are discussing our supply of fresh fruit. My brain will not filter any of that, so I am forced to try to understand what five or six other people are all saying at the same time, isolate from all of those words what the person in front of me is saying, and then select the correct response on the drop down menu selection from the “acceptable dialog” program running in my brain at all times. 

(Another fun fact I’ll share because I haven’t seen anyone else say it—I don’t always respond to the correct conversation. It can get especially awkward because the person I’m actually talking to won’t have any idea what is going on in the other conversations in the room, so my random response comes totally out of nowhere.)

Today, I put the earplugs in whenever too many conversations were happening at once. I could still hear all of them, but what the earplugs did was they lowered the volume on the conversations happening further away, and my brain was able to separate what was happening directly in front of me with a little less effort. It still required an extreme amount of focus, but it became possible. I think that is the most exciting part about finally having a diagnosis—more things are going to become possible. 

In learning that I have ASD, I am finally learning how my brain works. I have words for the things I struggle with and, for the first time, I also have potential solutions that make sense. I’ve been looking for solutions my entire life, but it’s as if I’ve been reading the wrong manual. Though there are perks to having all of your senses on overdrive, it would be nice to be able to turn the volume down every once in a while. And that’s what I did for the first time in public today. I’ve got the right manual now—I don’t have to wish I could “reset to factory settings” anymore. My version is different than everyone else’s, and that is actually a pretty cool thing. (Are you still following this metaphor?) In short: the earplugs were a success. 

The Beginning.

I finally feel like I am allowed to talk about my experiences. I am finally allowed to be unashamed, unembarrassed. I am finally allowed to take off my mask, because for the first time, I recognize it’s there. I know that my experiences are real—my experiences which are the result of the wiring inside my head. But as Dumbledore so brilliantly says: “Of course this is happening inside your head, …but why ever should that mean it is not real?”

My experiences are real. The ones I’ve denied and kept quiet about. The ones I’ve done my best to ignore, the ones I’ve been told are only in my head and I just have to outthink, just have to move past, just have to push through, just have to exercise, just have to practice, just have to deal, just have to, just have to, just have to.

Not only are my experiences real, but over the last 8 or 9 months, I have learned that they are not unique. My experiences belong to many others, too. And there is no “just have to” ANYTHING. Finally.

I finally have a framework that makes sense for my life—a framework I can finally build from. I guess I shouldn’t really use the world “finally” because it isn’t “final.” This isn’t the end. It’s only the very beginning. But what other word do you use for something you spent 32 years waiting for? 32 years struggling AGAINST instead of working WITH? After 32 years, there is no other word—so “finally,” it is.

At 32 years old, I finally have an explanation. I know the reason my experiences in life seem different from everyone else’s. I finally have a word for that invisible wall, keeping me separate from the rest of the world. I know why my senses overlap—why light is so loud, why sound is bright, disorienting, physical pain. Why I can hear, smell, taste, feel, and see the things that no one else seems to be able to. Why my entire physical experience of the world is different.

I have always wondered what is wrong with me. Always wondered how I can be so smart, so talented, so driven to contribute something meaningful to this world, and yet so physically unable to handle some of the most basic things life can throw at a person. Things like timeliness, things like laundry, things like friendship.

It wasn’t until this past winter that the possible explanation suddenly presented itself to me through someone else’s post on my Instagram feed. I was a little stunned, seeing it. It was a word I was familiar with, but I had never seen explained in a detailed way. I had never thought to look it up, never thought it could apply to me. But this Instagram post spelled it out in a way that was undeniable. This is a word that belongs to many, and seeing it clearly for the first time, I knew.

I began researching, collecting every fact, every story, every other lived experience I could. I began reading books, blogs, and journal articles. Watching Ted Talks, lectures, and YouTube videos. I knew, but I had to verify. Every shred of information I gleaned added more and more evidence to the pile. The pile grew, and yet I could not find a single thing to argue against or contradict what has now been confirmed through weeks of assessment by a specialized professional.

The word that belongs to many, belongs to me too. That word is Autism. And finally, I know—there is nothing wrong with me.