Losing Precious Control

When it comes to autism spectrum disorder, there are two things I cannot stress enough. The first is communication, the very foundation of an autism diagnosis and the foremost deficit. The second is emotional regulation. While I have explained emotional regulation in previous blogs, I needed to devote an entire blog to it for reasons you will soon understand. 

While many of you may have guessed that communication is the most important aspect of autism, I am guessing not as many of you would put emotional regulation second. Perhaps you would say impulse control, insomnia, hyperfixation, or rigidity are the second most important aspects of autism. But, in my own life, as an autistic, one thing comes up again and again and again: emotional regulation. It affects me every single day. Together, communication and emotional regulation are at fault for many of the difficulties, “over-reactions,” frustrations, and behaviors that autistics, parents, caregivers, and teachers handle each day.

In my blogs “Autism’s Barriers to Friendship” and “Autism & Agression,” I spoke about the importance of communication deficits. They lead to social anxiety, withdrawal, and aggression. If you are unable to communicate your wants, needs, concerns, and opinions, frustration, misunderstanding, and desperation result. And as communication is the foundation of all human relations, I am sure you can understand why it presides at the top of my autism hierarchy. But what about emotional regulation? Of all the countless areas in which autism impacts a person’s life, why is emotional regulation so important to understand? 

I define emotional regulation as the ability to appropriately respond to adverse emotional situations and manage emotions. Think about your day today. Reflect on how many different emotions you have felt today. Think about what went wrong today, what plans have changed, and what expectations or hopes were not met. Did you receive good news? Bad news? Did someone who annoys you decide to have a 3 three-hour conversation with you? Whatever the emotions, there are many we each experience each day. As autistics, we experience the same amount of emotions or emotional situations as you; however, we experience them more potently. There are two causes for this: our chaotic brains and our dysfunctional nervous systems. Because our brains move so quickly and are less organized than yours might be, we are more susceptible to the little things, minor setbacks that our autistic brains cannot handle. When a brain is operating on hyperdrive and less REM sleep (read: Buckley et al., 2010), it becomes increasingly sensitive and increasingly reactive. This is the autistic brain. Think of a time when you did not sleep well and had a stressful day. Were you particularly pleasant that day? Probably not. Maybe you lashed out, were short with colleagues and family, or retreated to your room. As autistics, this scenario is not just a scenario, it is our daily life.

Secondly, our nervous systems. In “Autism’s Barriers to Friendship,” I explained sensory sensitivity in depth, but I will do a brief overview here. We are all familiar with our five senses: touch, taste, sight, smell, and sound; however, there are four more senses. These senses are proprioception (spatial awareness and measure of force), vestibular (sense of movement and balance), thermoception (sense of hot and cold), and interoception (feeling hunger, fullness, and the need to use the restroom). Sensation is understood because of our central and peripheral nervous systems, two divisions of our one nervous system. The peripheral nervous system allows us to pick up sensations, say a bad smell. Once this smell is detected, this stimulus is sent up our spinal cord and to the brain’s thalamus. Now, it is in the hands of our central nervous system, and this is where, in autism, things go awry. The thalamus, upon receiving this stimulus, redirects it to a specialized location of the brain to be interpreted. Smell is sent to the olfactory bulb in the frontal lobe and then to the olfactory cortex in the temporal lobe for processing. Somewhere in this process of transport and actual interpretation, autistic brains tend to misjudge the potency of the stimulus. This happens in two ways: hypersensitivity and hyposensitivity. The brain may tell the autistic person that this smell is SUPER strong when, in reality, it is not (hypersensitivity). Or it may say that the smell is barely noticeable when all the other people in the room are gagging (hyposensitivity). Because our brains routinely mess up sensory interpretations both ways, we are left to the element of surprise. This surprise causes our mental state to be sensitive, as does hypersensitivity, which overwhelms us.

These two factors account for the increased potency with which autistics feel emotions. While emotional regulation is how we react and manage emotions, I feel these things are important to mention first, for having an increased vulnerability to emotions when already emotionally impaired is like adding insult to injury. 

To explain the autistic inability to manage emotions (i.e. poor emotional regulation), I will use myself as an example. I am 19 years old. I can confidently, but not comfortably, say that my emotional reactions are not equivalent my age. I can already read some of your thoughts: “But Kloey, I know you, and you never act like a child.” To this, two things: 1) you do not experience my internal world, and 2) I mask. I may respond emotionally right away, or be able to delay my response until later. Masking, or hiding, my disregulation is something I have had to work to master, but sometimes I still fail. I would say half of the time, I am able to mask my emotional reactions and let them out later. The other times, I have zero control and out comes the flood. Few people are privy to the latter and I try my best (by masking) to keep it this way. If you know someone who masks, remember this: although unmanifested, the distress is still there. 

Now, a recent example. Christina, welcome to the blog. A few weeks ago, Ashland Special Needs Ministry was moving into our new office space. I was elated! I had been planning room layouts, getting office supplies, items to decorate my desk, brainstorming decorations, and so on. We could get the keys to move in on Tuesday, hallelujah!... But the Lord had different plans. As many of you know, sickness has been running rampant recently, and Christina got hit hard. No one can be blamed for getting sick, but when you are autistic, sicknesses is your worst enemy because it causes unexpected change. 

When I heard she was sick, I was devastated. I texted her, and texted her, and texted her, trying to see what I could do by myself. I was so distraught at the prospect of not moving into our office on Tuesday that my brain was panicking to the max. Oh, and did I mention crying? Yea, lots of crying. 

Since she was very ill, she was asleep, so she did not reply. Cue more crying. Not only that, but I could not think of anything else all day (hyperfixation). I believe the only thing I got accomplished that day was a walk outside before I went to bed at 7:30 PM. 

The next day, she was still unwell, so I begged her to let me vacuum and mop the empty office. Who wants to vacuum and mop? And what 19-year-old blows up her boss's phone, begging? I am not proud of my actions in any way, but here’s the truth: my brain was not thinking straight. I was grasping at straws, trying to deny and ward away any change in plans. Vacuuming and mopping is better than not getting into the office at all, right? I was trying to deal with the reality that plans were changing, but because of impaired emotional regulation, that is how I responded, despite my age and usual professionalism. 

Now, jump forward to Friday evening. At this time, Christina was healed and feeling better, and we were going to move in. We met at 8:00 PM outside the office only to find out that our key did not work for the stairwell door: we were locked out. A wave of emotions and panic hit my already frazzled brain. This cannot be happening. We called some contacts about our key, but it was Friday night and we would need to wait until the next business day to get a new key. My autistic brain could not handle it anymore, and by that, I mean I do not have the emotional regulation to handle disappointment on top of the previous changes and emotional turmoil (not that I handled those well either…). Someone my age may have said, “Man, that’s a bummer. Let’s plan on meeting back here at on  Monday,” but not me. I had a meltdown.

This is emotional regulation, or rather, the lack thereof. Every autistic individual deals with an impaired ability to respond to emotions appropriately. Our brains do not self-soothe or follow innate coping mechanisms. We are hard to de-escalate. Why? Our brain wiring and anatomy are different. We do not have the capacity to handle emotions as a neurotypical does. Autistic amygdalas, the part of the midbrain that controls emotions, grow too big, too fast (read Shen et al., 2022). This leaves us with subpar emotional regulation, as manifested in my personal story above. 

The reason I rank emotional regulation so highly in the autism hierarchy is because of the prevalence. As we explored earlier, life is full of emotions, but life is also full of changes and disappointment. Autistic people have it rough when it comes to emotional regulation because not only is it a part of everyday life, but it is amplified for us by brain chaos, change, and sensory sensitivity. And to top it off, we already lack the ability to handle it even without the changes, brain chaos, and sensitivity. This creates a perfect storm. One that ends in lots of crying and meltdowns. 

Unfortunately, there is no way to prevent this. We cannot take emotions out of the human experience, we cannot stop all future changes, we cannot fix the autistic nervous system, and we cannot take away the amplified wiring of the autistic brain. Emotional regulation challenges will always exist for autistics. While we can work on coping mechanisms, coping mechanisms only  act as a dam. It catches the panic and emotion after it is produced, but it does not stop the river from flowing. Coping strategies cannot change our brain’s chemistry or innate reactions. Sometimes, coping strategies work for me; other times, there are too many precipitating factors that hinder my ability to execute those strategies, like my example above.

I want to stress that, although I keep getting older, my emotional reactions are not progressing with me. This is embarrassing, and it is hard to admit. It is difficult for me to write about my office meltdown and realize consciously that I did that; I acted that way. In the moment, my brain is far from conscious actions and my emotions are in total control. Only in retrospect do I gain back my control, but I do not like what I find. 

To struggle with emotional regulation is to lose your precious control. Control that I covet. Control that I need to calm my brain. Control that I need to maintain my house and my job. Control that I need to maintain friendships and work relations. In autism, my control slips away because of my inability to appropriately manage emotions and emotional situations, my emotional regulation.

The reality that I face is this: I must work to regulate myself using the capacities I do have. I must make tools available when I might need them. I must learn coping strategies. I must make up for the damage from when I was not in control. This is an extra burden on autistic people. It is important to recognize this whether you work with someone with autism or love someone with autism. Before gawking at their reaction, blaming them, or firing them, remember, they just unwillingly lost their most prized possession, the only thing that can provide calm to their lives: their control.

March 6, 2025