8 Things I Do When I Disappear Because of My Autism
This is probably one of the most common phrases used in our home. Actually if I were to be honest, it’s not just at home. It seems like someone is always looking for me. Although it feels good to be wanted, I realize the main reason I am in high demand is that I often disappear like a magician’s rabbit in a hat.
My children aren’t always asking where I am because I am never home. In reality, I’m quite the homebody. I go to work. I go to the gym. I go to the movies. That’s about it. My family pretty much knows I don’t go to a lot of places, so asking where I am is less about me being hard to pin down and more about recognizing I move in and out of social settings like a CIA operative.
Now you see me. Now you don’t. Then I’m back again.
It doesn’t just happen at home. It also happens at work. It’s probably most noticeable immediately after I step off the stage from delivering a weekly sermon. My messages are aimed at giving my audience precision and passion and just when I get them all worked up and excited…. poof! “Where did he go?” “Where’s Lamar?”
Most of the reason for this is that as a part of my ASD (autism spectrum disorder) I struggle with sensory processing issues. This means my brain doesn’t filter out unnecessary sights, sounds, and smells. I often say when it comes to my brain I don’t have an EQ. There is no such thing as white noise.
Everything is the same volume and that volume is always at max capacity. It’s often the same experience when it comes to lighting and smells. My brain snatches sensory output out of the air and attempts to process all of it at one time at maximum capacity and at maximum speed, and eventually it is overwhelmed by it all.
It is what I call the equivalent of taking a concussive blow to the head. It can be problematic and painful so I’ve learned over the last few years to bail before my brain is bombarded with too much input.
So I disappear.
The bigger and busier the environment the more of my magic act you might catch. Don’t be alarmed though.These behaviors are known as stimming, or self-stimulation. While self-stimulating is something that everyone does (i.e. nail biting and finger tapping) many people diagnosed with ASD stim in ways that help them regulate their sensory input as they respond to the stress of being overstimulated.
I always come back, but in case you were wondering what I do when I disappear, here are eight things I do when I’m out of sight that sometimes help me to deal with my overwhelmed and overstimulated:
Sometimes I’m just pacing. Walking to and fro or around in circles. Sometimes I count my steps. Other times I walk around and watch my watch. At home I pace in the bathroom. We have a pretty large facility at my church so this works well for me at work, but only during the week when it’s far less crowded than on the weekends.
Pacing helps calm me down because I can control and anticipate my input. I know when my feet will hit the floor next and that gives me some relief.
At times this can border on being unhealthy, especially if my nails are too long, but normally this doesn’t happen because I tend to bite my nails way more than I should. (This can also be a problem that I’ll discuss later in this post.) When it comes to scratching to relieve stress I scratch my head. This also means I rub my head pretty vigorously.
Sometimes I also rub my face as well. My staff has reported picking up on this stim so apparently I don’t just do it in private. The good thing is they know when I’m becoming overwhelmed so they able to help me by giving me some needed space. My wife is also very helpful in recognizing this stim and helping my find some relief.
At times when disappearing I head straight for my headphones. A few years ago my wife purchased me some really great wireless BOSE headphones. Music calms me, but I also think that feeding my brain with “organized” noise helps to reorient it.
When I am in a room full of people and sounds everything can become disorganized and disabling. Words and sounds that don’t work together can easily become painful. Music works together and moves in the same direction. Harmony, melody, rhythm and lyrics all make sense and as a result, bring healing to my senses.
I am actually listening to one of my favorite artists, Lecrae, in my headphones as I’m writing this blog because I had to step away from a Thanksgiving day gathering to get some relief.
There are times when the trauma of sensory overload is so bad I go to sleep. This one is fairly new for me.
Until about two years ago I almost never napped. I think this was due mostly to my fear of being considered lazy, but as I am learning to be more submissive to my brain and body’s way of helping and healing itself, I have found I often need more sleep as a resource for sensory recovery. I also believe that as I am growing older (not old) just older, I don’t recover as quickly as I used to.
Napping has become my body’s way of slowing me down so that I can have more intentional recovery time.
Yes. Crying. It does happen occasionally, especially if I am at the end of my sensory tank going into a high-octane social setting. Normally there is also an additional stress factor that works in conjunction with sensory overload, such as time.
Several years ago I experienced a complete meltdown while driving because I was completely overwhelmed, as well as being late for an important meeting in downtown Atlanta I thought, at that time, would make or break my future. (*Side Note: I have an internal clock in my head and I hate being late). I was in an area of town I was unfamiliar with and I was overwhelmed by the noise of the big city and I was completely disoriented. Ironically I was literally across the street from where I was supposed to be and did not know it until over an hour later.
Sometimes when I disappear it is to shed a few tears because my brain just can’t handle the input, and it is literally and physically painful and disorienting.
Normally when I disappear I am not going to talk to anyone. In fact, I am probably disappearing because I don’t want to talk to anyone. The environment is too much and I don’t have the capacity to converse, especially to answer questions. So when I disappear to talk, I disappear to talk to myself.
This usually happens while I pace and I am normally doing something called scripting. Scripting is when I stim by carrying on a conversation with myself I anticipate I may have to have with another person. There are many times this is helpful because I am able to calm myself by using the time to prepare for possible social interactions.
Over time I have developed this into a skill that has helped me to develop my public speaking skills.
Most people do this and there are many times I don’t actually disappear to do this — I just do it where people can’t see it.
Tapping my feet under the table, tapping my finger or a pen against my leg, or tapping my fingers together is also a way that I relieve sensory stress. If I do choose to actually leave the room it is probably when I am tapping something against my body that may seem strange, such as tapping my head with a pen or tapping or slapping the back of my neck or head with my hand or an object like a pen or pencil.
As I stated earlier, I often bite my nails. It is really not a great habit.
I must admit that it rarely stops with the finger nails. Sometimes it ends up being the sides of the nails and fingers. I have also chewed the insides of my mouth. My dentist has made me aware of how problematic that can be, so I have been working on using different textured food and snacks to help with this. Hard and crunchy candy and mints. Most times anything crunchy can help and I don’t always have to disappear to stim in this way. However, depending on the environment, I may slip away to chew something crunchy and/or some gum in order to direct my sensory input so I can settle my brain.
In the end, sometimes I will disappear from social situations, but just remember stepping away and stimming is always an act of self-care, so don’t worry too much.
I’ll reappear when I’m ready and when I’m rested.
A version of this post originally appeared on The Autism Pastor.
We want to hear your story. Become a Mighty contributor here.