By John Clise
Like I always say with these columns… this is just my experience. No two autistic people are the same, and mine isn’t spectacular or special… it’s just my story.
I like routines and schedules. Two things that have been eluding me the past few years. Clearly, that has not helped me at all.
Routines and schedules keep me focused. They keep me on track. Aimless wandering is not my friend.
Routines and schedules keep the stress level low. I know what’s happening, and what’s going to happen. Sudden or unexpected changes cause me stress. I’m sure these things cause everyone some distress.
I think the difference for me is having no capability of how to deal with that stress. It just overtakes me, and washes me away. And sometimes, meltdowns just happen for no apparent reason. Sometimes it starts when someone touches me in a way I don’t like… which is pretty much any type of touching.
Meltdowns can happen anywhere and at anytime.
Telling me to stop or to calm down in no way helps. If I could do either of those things I would.
I get overwhelmed, and can’t breath. It’s like a panic attack, sort of, that’s followed by a bunch of other unhandy things.
I begin to stim more and more. Rocking back and forth and side to side. Flailing hands and arms. Then I begin running my fingers through my hair. Pulling my hair. Rubbing my face. I rub my eyes. I end up gouging at my eyes sometimes. It does hurt, yet I can’t stop.
After the eye gouging I move into the more self-violent phase of my meltdowns. I smack my face, punch face, and end up banging my head on whatever hard surface I’m near. Doors, plaster walls, the floor.
At some point, I exhaust myself and have to sleep.
If I can see myself “getting wound up” as many people say, though I’m not sure how to address everything wrong with that phrase, I go to the bathroom or try and cover myself with heavy blankets, though the latter generally requires some help. The bathroom is quiet. Dimly lit. Laying or sitting in the tub is very comforting. It’s firm. I like the way it feels against my body. With the door shut I can be in peace by myself.
And I can’t stress this enough for me… do not touch me during a meltdown. It only makes things worse. Way worse. I become very combative. A fully grown, non-responding, 200 pound man can be quite a handful. Unfortunately.
After it’s all over, I don’t mind and actually find some comfort in being bear hugged, for lack of useful term, from behind, and squeezed firmly, by someone I want hugged by. Otherwise, reference the above… don’t touch me in anyway.
Writing these columns is stressful but I feel compelled to share the story. Putting yourself out there for people to say ignorant things like “you don’t look autistic,” or “you can choose to control yourself” or “it must be a super mild case.”
As I said, I can only tell my story. Other autistic people have their own stories. I do feel for other autistic people. I also feel for their families, friends, caregivers, and anyone else they trust enough to let into their inner circle. It’s not easy. It can be quite stressful, and so much more.
The people in my life worry about me. Some worry about me constantly. It’s difficult to mask the autism all of the time. It’s exhausting. It is nice to have a few people you can just be yourself around, who won’t want to know why your hands are shaking all over the place or why you’re rocking back and forth. Or whatever else it is I might be doing. Repeating the same word or phrase over and over. Watching the same video clip over and over. Being completely lost in something. Taking things literally instead of figuratively or as a joke as they were intended.
Having people actually listen to me when I say I don’t want to do something, and not continually bring it up until I do and then meltdown in the middle of it… pretty much screwing everything up. When all they had to do was just listen.
Anyway, thanks for reading. I appreciate it. See ya next time.