Before I was an adult, I tended to shut down when I was confused or anxious. The first example I’ve heard about was when my parents brought my sister home from the hospital. I was two. As it was described to me, my brother found a baby interesting and acted “normally.” I was freaked out by this strange creature invading my world. To cope, I started rocking on a rocking horse, not stopping for one or two hours. Through the first part of my adulthood, I was able to manage avoiding shutdowns.
But, once life got more complicated due to responsibilities, added stresses, and a propensity to fail in ways I never used to, I experienced more meltdowns. They.are.not.fun. If shutdowns offer some quick protection from sudden changes or surprises, meltdowns offer an intense relief from a series of unmanageable stresses.
A few weeks ago, I had one of the worst meltdowns of my life. As often happens, the specific trigger was small. However, I felt the person with had every reason to know how vulnerable I was at that moment. This apparent ack of understanding was possibly the actual trigger.
Later, in trying to explain it was not her fault, all I got was pushback, as if I enjoyed having a meltdown or it wasn’t her concern. Somehow, in offering an explanation in her defense, it came out as an attack. When I said, “It’s not your fault you triggered a meltdown”, it sounded like, “Since you triggered this, I’m blaming you.” It was very confusing.
To those who have any kind of relationship with an autistic person: listen to what they tell you. Otherwise, you’ll hurt them worse, and I believe you do bear responsibly for ignoring a person who is clearly in pain, whether you caused it or not. (In some places, it’s technically illegal to ignore a person who needs medical attention.) If they reach out to you, they trust you. They cannot rely only on people who fully understand, so you, even though you may not be an expert on autism, can still do something to help.
As an analogy, consider if a person breaks a leg slipping on an avocado. It’s very likely not your fault at all. However, you still should feel enough compassion to help them. Telling them, as you are walking away, that you are not an orthopedic surgeon and therefore you cannot do anything, is unkind! You can’t fix their leg, but you can be there for a brief moment. Moreover, telling them that they are fine when they are not, as if you could know, is both arrogant and dismissive. Sometimes you are the only one present to give a person the help they legitimately need.
My brain is now further injured from a new layer of trauma. It was likely preventable, only requiring a few people to pay more attention and take me seriously.
A brain scan probably would reveal a literal structural change has happened. Mostly, this is due to trauma and stress over the past year and a half, and I’m not referring to COVID-19 (which, as far as I know, I’ve managed to avoid.) Much of this likely could have been avoided if the people closest to me, namely family, had been more understanding of what they were actively and passively doing to cause me emotional turmoil.
Were there warning sings?
The first precursor to this meltdown happened fifteen months earlier. At that time, I was not familiar with the term autistic burnout. A single event, involving family members who have known me since birth, set me on this path. I still have that moment in my mind, but I’m not going to share that with you. It was a failure, on many levels, of the people who needed to be helping me.
That situation was preceded by years of trauma. But, it came together in one moment. Fifteen months later, after a series of increasingly traumatic events, I had the most severe meltdown of my life. Sadly, and inexplicably, the person I needed to just stay with me walked away. That’s when I saw the plastic storage bin lying inches from my head as I was lying curled up on the floor. It was too tempting to try to turn off my brain. I don’t recommend it.
This could have been prevented. Should I blame the people around me? I’m not certain. Do I? Yes, in some ways, especially since I told them what I needed. And, in their refusal or inability, I sought help from someone who did understand. Unfortunately, the pressure that ultimately was put on this person became untenable, and the only person who was actually helping me could not anymore. In my desperation, I worsened that situation, while others encouraged me to do whatever didn’t require much of their thought or attention. In some cases, they literally stated that.
The meltdown didn’t have to happen. I merely required people to take me seriously. Because they did not, I’m not sure when I’ll be able to resume any kind of normal life. My autism is not their fault. Ignoring my stated needs is.