Mental health means
not being forced to conform
not having to wear a mask
not being left to struggle alone
not having to beg for basic services
not being denied autonomy
not being dismissed and gaslit
not being told to suck it up
not hiding your true self
not being left to feel alone
not being forced to go to school or work or elsewhere if you just can’t
not being pressured to socialise
not giving your all and getting little in return
That’s a list of things that mental health is not. I’m still not sure what mental health actually is.
I had a meltdown this morning. I’m not going to go into why it happened, but it happened. And because the timing was bad (we were expecting company), I did what I often do: I pushed back the tears and turned it into a shutdown. After about an hour I came out of it and plastered an extra thick mask on and held it together for the next two hours. And now I’m paying the price.
The after effects of a meltdown or a shutdown can last a long time. It’s been five hours now and I’m barely functioning. Feel like I have a hangover. A thick fog fills my vision. My pain levels have intensified. I keep making stupid mistakes. I can barely talk. I feel like I can’t breathe.
Hopefully, this time, I’ll be better by the morning. If I manage to get an ok night’s sleep. That’s a big “if”.
The physical effects are one thing. The mental ones are another. I will replay the events that led to the meltdown over and over. I will try and think up ways I could have avoided it. I will blame myself and feel embarrassed. And vow to do better next time.
But really, it’s not in my control. Often meltdowns just happen and can’t really be avoided. Except by doing what I did and performing what I call a “forced shutdown”.
How others react to my meltdowns often has a huge impact. If I get proper support and reassurance at the very first signs of one, often by means of a hug (this is for me, other autistic people may not want to be touched at all), then that may be all that’s needed. Or if I can get away to a quiet spot and not have any social expectations put on me.
Because, really, I’d rather not have a meltdown. Nobody would. Especially when the aftermath can be so severe.
As the country braces itself for Storm Lorenzo, I can feel my anxiety levels rising. As they do every time a big storm hits. My heart is pounding and I can’t sit still. And it’s only just starting to get windy.
My mother was the same. She referred to this as “Eagla Gaoithe”. Eagla Gaoithe means Fear of Wind in Irish. Ancraophobia is the Latin term for it. And it is a real and genuine phobia.
Logically I know the storm can’t hurt me. Especially if I don’t venture outside. But anxiety doesn’t understand logic.
My anxiety isn’t as bad as my mother’s but it was passed onto me by her. And hers to her by her father. It’s an inter-generational thing. Which is also the reason we use the Irish term for it. Because we can trace it back to one individual, who was a native Irish speaker, my mother’s great grandfather.
This man, or so the story goes, was asleep in bed in his thatched cottage in the West of Ireland when a terrible storm arrived. And blew the entire cottage roof off. He was left lying there looking at the stars. And from then on whenever a storm came, he slept under the bed. Or rather, cowered in fear.
Intergenerational trauma. This example is quite a mild one. There’s worse traumas passed on by my ancestors. But right now this one is foremost in my mind.
And the only thing to do is to push it back and not give into the anxiety. Not let on. Especially in front if the kids. So at least they can be a generation of my family not effected by an irrational fear of storms. Because these storms are only going to get worse. That much I know for sure.
This is a post that’s tough to write and might be tough to read. But I need to write it. And I’m aware some folks may disagree with it and say I should never write these words or say them out loud.
But…sometimes I hate being autistic.
Sometimes I just want to be “normal”.
Sometimes I just want to be able to go into shops and not have my senses assaulted by the lights, the sounds, the smells.
Sometimes I want to be able to handle crowds. To be able to have a conversation with a friend in a loud and busy cafe. To be able to relax in the company of strangers.
Sometimes I want to be able to blend in without damaging my mental health. Without changing who I am.
Today is one of those times.
I am tired of the hardship. I am tired of the fight. I am tired of being autistic. Just plain tired.
As they say “it’s not all just rainbows and unicorns”.
Like a unicorn, autism acceptance is a mythical creature. It doesn’t exist.
Like a rainbow, true support only comes after the rain. It’s rare and fleeting.
I will probably wake up tomorrow and think “what have I done? Why did I write all that negative crap?” Because this feeling, while very real, never lasts too long.
Tomorrow I’ll go back to being autistic and proud.
But today I wish I weren’t autistic.
I haven’t written a post in what seems like forever, for me.
Hard to write when I’m in so much pain.
I wake up in pain. Go to bed in pain. And in pain every minute in between.
It really is ridiculous. And there doesn’t seem to be a way forward.
My brain is all jumbled up from the pain. Hard to write coherently.
And that breaks my heart as writing is my heart and soul.
Anyway this is just a little note to say I’m still here, I’m not going anywhere, I’m not giving up. But won’t be doing much writing till the pain lets up for more than a few minutes.
Another week. Another “x increases autism risk” headline splashed across the papers.
Advanced age in either parent.
Use of psychiatric drugs in the mother during pregnancy.
Ultrasounds during pregnancy.
So much time and money invested into looking for causes. Because once you know the cause you can prevent or reduce the numbers of autistic people being born.
Every study into cause. Every newspaper article reporting it. Reminds us every single day that people wish to prevent people like us from being born. From existing.
Because what could be worse than having an autistic child, right? We are to be rejected and feared and hated.
That is what the research tells us. That is the only thing it achieves. Because they will never find an environmental cause. Never. Instead they will squander more money and resource and instead of helping anyone they will increase stigma and hatred towards us and lead to harm.
“You are not like my child” is a line adult autistics encounter frequently from parents of autistic children trying to shut down our arguments.
Adult behaviours are often different from those of children. We have grown. We have changed. And that’s a big part of why we “don’t look like” your child. Because “outwardly problematic” autistic behaviours get converted into more socially acceptable alternatives as survival mechanisms as we age.
I’ve written about how Autistic shutdowns are meltdowns “turned inward”. I suspect they are more common for autistic adults. We learn that shutdowns are more acceptable than meltdowns, even though they may be equally or even more damaging.
We learn to fake eye contact. Pick a spot to look at that’s near enough to the eyes that nobody notices.
We keep our mouths shut when Echolalia wants to spring forward from our lips, developing mental Echolalia or ear worms instead.
We learn to stim more discreetly, in more subtle ways like twirling our hair or tapping our pens.
We learn hacks and tricks and different ways of being because we have learnt our authentic selves are frowned upon.
But we also naturally grow and develop new skills, like all humans do. Our experiences shape us and change us. We are not static. And neither is your child. Every day, every week, month, year, we grow and change and develop.
Some of these changes are good and natural. Some are forced and harmful but used to cope and survive. Each is something that has taken some time.
We are not your child. But we have experienced similar childhoods. And their lives will take similar paths to ours. But with one key difference. If we all work together, if we work hard and fight against ableism, then they will only experience positive and natural changes and won’t need to change themselves in harmful ways just to survive.