In this post, I'm going to discuss about a somewhat uncomfortable topic yet important to discuss. It is about the "difficult days" of living with autism. The days when using your coping strategies just fails. It is the days when you resort to using behaviors or go into a full blown meltdown. It can be do to a lot of things like autistic burnout things just don't go your way, menstrual cycle for females etc. Typical human beings have bad days when the demands of daily life just outweigh their current coping mechanisms. Unlike typical people, autistic people are made to feel ashamed for having bad days. Often, we are referred to having a "tantrum" or having "behaviors" when in reality they are having an "off" day. Consequently, we put pressure on ourselves to not have "off days" for fear that the people around us will be irritated that we did not use our strategies. However, holding and bottling our frustrations can destruct us from the inside.
For instance, there are days when I feel that self management and self regulation just fails me. When I get stressed, I would yell "meat!' out loud. If I get really agitated, I would slap my fist on the table or throw objects on the ground. However, my family (more specifically my dad and grandma) don't know how to deal with my outbursts. Their reactions (e.g. scolding, saying "don't do that") sometimes makes the situation worse or only furthers my escalation. They don't understand that I am in distress and that I don't behave this way intentionally.
Another instance where I was made to feel ashamed of my "outbursts" is with sessions with my behavioral therapist. Her confrontational personality would sometimes trigger me and I would start pounding my fists on the table or destroying objects etc. In response, she would get impatient and say "You should know better!" or "Why aren't you using your strategies that I've taught you?" Overtime, I was made to feel ashamed for expressing my distress because I feel that I should know better because I went through behavioral therapy that taught me self regulation skills and that I "should know better."
The truth is that even with behavioral therapy, there are still going to be times when self management fails you. When we are escalated, sometimes our emotional coping "tools" are not accessible to us. When there is a lot of demands on our plate, we may have used all our coping strategies in dealing with previous demands. When one more "stressor" gets added to our plate we can lose control very quickly. What I want those who care for and support someone with autism to understand is that even though our behaviors can be very startling and at times stressful, please understand that we don't intend to behave this way. We are just as scared and uncomfortable with our intense feelings and behaviors. Just like typical people, we need compassion and understanding during our bad days. A post that I found useful was written by two autistic self advocates that discuss the reason behind "meltdowns, self injury and aggression" that we so often display when we are escalated. We have bad days like everyone else we just might deal with them differently.