Imagine if you lived in a world where the floor, the ground, every surface was literally lava. Imagine everyone else that you knew had no problem with this whatsoever. Imagine if their feet didn’t so much as sweat or dry out as a result of this, let alone blister or burn or anything else. Imagine if they laughed it off or called you weak if you complained about the lava being hot. “Don’t be ridiculous; lava isn’t hot.” Imagine if no one took it into serious consideration that your feet are actually hurting. Imagine if there were almost no non-lava surfaces to rest your feet on because no one else understood why that’d be necessary.
Worse still, imagine if people were upset about your “constant complaining,” if your attempt to explain the heat only got on their nerves. Imagine if your parents expressed embarrassment from your jumping and waddling. Imagine if others told them that your walking slowly and painfully through the lava is a reflection of their failure as parents. Imagine if your siblings bemoaned having a sibling that couldn’t run through the lava as fast as them, that the smell of your burning flesh aggravated their nose.
Chances are, you’d nearly, if not literally, burn your feet to the bones before you acknowledged to yourself that maybe the lava actually is burning you and that you’re not just overreacting.
Diagnosed or not or anything in between, a lot of autistic people learn early on that there autistic way of being is seen as “burdensome” to those around us. We don’t socialize enough, or we talk too much, or about the wrong things, or with the wrong tone of voice or with the wrong bodily movements (and Heaven help you if you don’t speak with mouth-sounds). We’re too emotional, or too unemotional in the wrong situations, or don’t express emotions appropriately, or express the wrong emotions at the wrong time. We’re too slow to pick up on certain things, or we move too quickly for others to follow, or we act so “weird” as to draw attention to ourselves and cause second-hand embarrassment to those with us, or we’re “in our own world”, or we don’t have our priorities straight, or we’re too scatter-brained and unfocused, or we give too much energy to things we shouldn’t.
So those of us who can tone things down and/or amp things up. We mask our behaviors and challenges and try to blend in, not only for our own sake, to avoid punishment and to move ahead in school and employment, but for the sake of those we care about, lest we cause upset or burdenship to them. We “grow up” and “stop complaining.”
So of course we’re less inclined to tell others when the strain of it starts to make us feel worn down or stressed out.
If people express exasperation and disgust every time we cry, then we’re not going to want to tell them when we’re crying ourselves to sleep or when we’re crying in the car on our way home from work. If people get upset when we’re tired from a “simple” task like going to the grocery store or driving to the bank, then we’re not going to want to tell them that we’ve felt tired near constantly every single day for years now. If people don’t want to know that we find the “basic life activities” hard, then they surely don’t want to know that we find staying alive at all hard.
So we mask that, too.
In fact, maybe we don’t even recognize that there’s a problem because we’re so used to feeling and thinking things that no one else seems to feel or think that we assume it’s just “part of our weirdness.” Maybe we just think that the pain in our feet is just our overreaction to the lava and we miss the very real damage to our tissue.
Now, to be clear, mental illness is NOT at all actually uncommon. Approximately 1 in 4 Americans have some form of mental illness. This number is very likely higher in autistic Americans. But even non-autistics are encouraged to mask those conditions, or even symptoms in common with those conditions, because we’re taught that other people don’t want to be “bothered” with it. So a lot of people get the impression that they’re alone in those struggles, that they’re their own personal shortcoming.
Also of note that one doesn’t necessarily have to have a diagnosed or even diagnosable mental illness to be mentally unwell. Just as a fever is still a fever in the absence of a cold or flu or other infection, negative thoughts patterns are still negative in the absence of clinical anxiety or depression or other mental health condition. And probably a lot of autistic people have negative thoughts, not only due to the nature of an often-overstimulated nervous system but due to the constant exposure of the impression that it being overstimulated is making things harder for others.
Probably very few adult autistics are living at their optimal level of mental wellness.
So taking the mask off isn’t just about recognizing the autism and living, if only in private, an authentic autistic experience. It’s about being honest about our unwellness, about the anxiety and depression and suicidal ideation and whatever else we experience. Ideally, it’s about recognizing and acknowledging our limits before we get pushed past them; it’s about stepping out of the lava as soon as we’re aware that it’s hot and not letting it get to the point of blistering our soles. But if it does get to that point, it’s about treating the injuries and giving ourselves time to heal.
A note on suicide: autistic people are about nine times more likely to die by suicide than are our non-autistic peers. If you couldn’t escape the lava and your feet were worn to charred skeletons, wouldn’t you consider just diving into the depths of the volcano and letting the lava swallow you whole?
I don’t want young and future autistic people to get to that point anymore.
I hope that we can come to recognize and believe people — not just autistic people but people in general — when they are suffering mentally or emotionally. I hope that we can provide supports when we notice that. I hope that we can give people the grace to heal, to rest, to prevent further injury, to step out of the lava.
I hope that we can get to a point where we no longer have to mask being mentally unwell. Because, in many cases, our lives literally depend on it.