This is a RANT! Or more accurately a neurodivergent protest against the discrimination we suffer every time we leave our homes (and unfortunately all too often for many #ActuallyAutistic, even inside them). It is about the trauma we are subjected to simply for living, or trying to, in a neurotypical world. I will not apologize for my passionate words. I have spent too much of my life trying to accommodate the neurotypicals while they refuse to compromise. No more. I don’t claim this is THE truth because none of us know what that is. But it is MY truth and my right to share it with you. In hopes that it makes some difference for other #neurodivergent in the future.
Let me begin by saying, that after a decade in London, Swansea has been a relatively inclusive place. Our two dealing with the police have been amicable. The LC was fairly accommodating as well. Even the #SwanseaGrand has been. Until now…
And that is where our story begins. As was our tradition since moving here, @PanKwake went to this year’s Panto. She came back excited about some play called Dracula. Since her birthday comes so quickly after Christmas, I was looking for a gift for her. I told her that I would check and see if they were selling boxes for this one. After our first time at the Panto, we discovered that as much as she loved the theater, it was just too much sensory overload to be in closely packed seats. So, we only attend events offering box seats. I go so far as to only purchase Box B1. The familiarity of the same space and view is one less challenge to deal with. Box B1 was available and after confirming with her that this was an ‘adult’ play, I purchased it.
As only another neurodivergent person can appreciate, each foray outside of our @HomeCrazzyHome is a BAFTA or Oscar worthy performance. As the adult, and the ‘typically’ OCD stereotype of an autistic person with lists, plans, and routines, it falls to me to organize each event. Making certain to leave plenty of time for any ‘disasters,’ or even common deviations from my carefully laid plans. I always overpack a bag. Appropriate clothing such as gloves, hand warmers, and jackets because, of course, I cannot control temperature. So I must be prepared for any eventuality. If I don’t know what is on offer at the venue, then I must also pack @PanKwake approved food. And if there is any change to the menu… Well, thankfully, @PanKwake is older and has greater emotional regulation now, otherwise, the switch from her beloved Joe’s to gelato would have warranted a meltdown. It helped too that I had fed the young adults beforehand.
The evening was to be a real celebration, a coming of age for @PanKwake. Dinner and the theater – how adult is that? Dinner went well. We left in plenty of time. (Did I mention that one trait of MY autism is OC-positive?) Even on the limited menu, we found something that @PanKwake would eat. Though Child was a bit less impressed. Yes, this time we took our ‘adopted’ young person with us. They are also neurodivergent. One neurodivergent adult with two neurodivergent young adults – perhaps I should have known it was a recipe for a Greek tragedy or a Shakespearean comedy? But I was reluctant to impose upon Alan to accompany us. Though I hinted strongly. I suppose mistake #1 for me. But it was all so familiar to me – the route into town, all of the venues.
We arrived early for dinner. The service, though not to my American standards, was relatively quick. We had almost an hour to kill before the play. We stopped and the young people played in the arcade at the bowling alley. I was already suffering from a combination of sensory overload and the ‘worry of being on.’ As I said only another neurodivergent person can understand that feeling of being on stage. All the *F*ing time. I paced myself, recognizing that I would have a difficult day on Saturday and need to recover. So I stayed outside. I actually hid under the stair where people go to pee. I even played a video game on @PanKwake’s iPad. It was surprisingly calming, but I did wish I had brought my Kindle and could read. Mistake #2 – I did not pack for my own sensory needs. They played for a bit then we walked over.
Again we were ahead of schedules. That is always reassuring for me. Better an hour early than one minute late. I had found it surprisingly easy to get my Covid pass, especially since I am not fully vaccinated, having had a severe reaction to my 1st. I had it all ready – my printed e-ticket for the box and the text for my pass. I explained that they were teens, autistic, and exempt. There was only an elderly couple ahead of us and all went smoothly. I was delighted to discover that another young friend was manning the snack bar. We made our selection, paid, and went upstairs until they opened the doors. We were almost half an hour early for that, but @PanKwake had her iPad and Child went back downstairs to chat with our young friend. I sat in the lone chair outside the door and rocked. Rocking is my stem.
All is well – so far. We like to get to our box early. That way I can set up. Technically, a box can seat five. But we never have more than three. Otherwise, it is too cramped for @PanKwake. And that is after all why we purchase box seats. To make more room, I remove additional chairs to the ante-room. When we bought our first box, I was not aware there was a little private seating area off the box. But that is the other advantage of box seats – a quiet, almost sensory, area. I had thought I would sit there, but Child needed my attention. Quite a bit so, in fact. They were not enjoying the monologue nature of the performance. Fair enough – neither was I. Can you say pretentious? But @PanKwake is so into anything occult. Plus as Alan pointed out, it was like having Bram Stoker’s Dracula read aloud to her. Something that is precious to a dyslexic person who cannot eye read.
I admit I was working hard. Child was bored and wanted to leave. @PanKwake had drunk several glasses of water in an attempt to stay awake for the performance. Like many neurodivergent people, her sleep schedule does not conform to the ‘normal’ circadian rhythm. In fact, she goes around the clock slowly. Sometimes, she sleeps all day and is up all night. Others, she is almost ‘normal.’ She had been mostly sleeping days and up nights, but for this, she was determined to stay awake. The problem was – that which goes in, must come out. She was making frequent trips to the bathroom.
As I said, this is hard work for me. Balancing the needs of two young people that I love. Though I am the mother of six, @PanKwake has been more like an only child. Since the others are older and/or live far away. Even then, her autism, and perhaps my own neurodivergence, have driven wedges with my older children. But now that Child spends weekends with us, I am realizing just how challenging two autistic young people can be. Heck, forget that, even balancing the needs of my older neurotypicals is not easy. Most parents won’t admit that. Or how badly they fail at it. But as Act 1 came to an end, I thought we had reached a compromise. Child and I would spend Act 2 in the ante-room, allowing @PanKwake to enjoy the rest of the performance.
Then – in she walks.
I don’t know her title, likely the manager or some senior person. She was sent to ask us to be quieter. As I said, I knew that even whispering as we were, Child and I were not conforming. But we had that covered. I was one step ahead of her. I had a plan.
BUT then she starts talking about @PanKwake and going to the bathroom. Doors and noise. And I lost it. Usually, my reaction is fight. But this time, perhaps after so long in the safe self-isolation of my @HomeCrazzyHome, or maybe because as I age my own autism becomes more debilitating, but for whatever reason – I first frooze. I could not believe that this person was complaining about @PanKwake going to the bathroom.
Okay, a bit of background. We own @HomeCrazzyHome because our neighbor at Alan’s old house complained about @PanKwake going up and down the stairs to the bathroom at all hours of the night. We had not even lived here two months when she came over screaming and yelling like a madwoman. This supposedly neurotypical nurse with the local NHS could not accommodate an #ActuallyAutistic ten-year-old. The day ended with @PanKwake sitting on her trampoline, crying, and calling over the fence, “I’m sorry. I can’t help it. I’m autistic.” I feared that was the end of this new love and spent the night worrying about where we would live since we had given up our council flat in London. Thankfully, the next morning began with the words, “I knew that loving you meant a few sleepless nights. She did not have that choice. We’ll move.” Yes, Alan bought this house so we could stay together.
But that does not negate the trauma of being yelled at, or watching my autistic ten-year-old cry and plead across the fence, or that sleepless night. Or the dozens, no, hundreds, if you count looks, then thousands of times that we as neurodivergent people have been discriminated against. It is cumulative. @PanKwake and I had the debate again just a while ago…
Are social anxiety, depression, and even PTSD co-morbidities, just a part of our autism? Or are they the result of a lifetime of stares, rude comments, and being asked – can’t just you be normal? Here stood this woman. Doing all that again. And especially the door and stairs of @PanKwake going to the bathroom. That set me off.
I grabbed our stuff. I yelled at Child to follow me. I went to find @PanKwake – in the bathroom again. And we fled. I was not even the good mentor that I try to be. I don’t think I even gave them the choice, as I believe we always should. I was hurting too badly. I was triggered. I fled – in shame. I did not even seek out that woman. I could not even find it inside me as I once would have to demand my money back. And an apology.
And we thoroughly deserve one. Perhaps not for the whispering. But 100% for the accusations of the doors and noise. That is ALL their fault. 100%. They have removed the carpeted stairs, making each step a staccato that reverberates throughout the building. And when was the last time they oiled those doors? That is NOT our fault. And the audacity of her to even say is BULLSHIT! That theater is no longer fit for purpose. And I refuse to allow them to blame an autistic sixteen-year-old for their mistake. Of course, it could have just as easily been an eighty-year-old in heels.
But they would not have dared do to her what they did to us. It was ageism and classism that were at the root of her complaint. At least as far as the bathroom goes. @PanKwake and Child were the youngest in the theater. And the prevailing adultist attitude is that young people don’t belong there. Well, who the ‘f’ do they think are going to keep that theater going in 25 years? The people there Friday night are dying off, faster as a result of Covid. And if you don’t welcome and embrace the youth, who you have lured there with Panto, then whose butts are going to fill your posh seats? Not that they were full Friday. That might have been part of the problem too. Noise carries and seems louder in almost empty venues.
I’m sure too that my attire of yoga pants and t-shirt contributed to the classist atmosphere of the theater. The fact that my head is now shaven and I continue to eschew make-up as greedy and misogynistic further reinforces their classist views. Do they know that we live in one of the most affluent areas of Swansea? Or that Alan is a Fellow at both the local universities? That I hold a master’s degree? Or that I have planned and managed much higher charity events in both London and Los Angeles? No, they judged this book by her cover.
Their ableist, adultist, and classist actions have further traumatized me.
We got out of there. We took a cab home. And when we got here – we had our 1st ever triple meltdown. Child was throwing things. @PanKwake being the empathic peace-maker was pleading. And I’m ashamed to admit, I lost it. I screamed. Child screamed. And @PanKwake ran away, slamming her bedroom door. I did recover enough to settle things with Child then but had to wait until the next morning to do so with @PanKwake. I have spent most of Saturday in my swivel chair in front of the TV watching rom-coms and aliens.
And honestly, I don’t want to ever leave @HomeCrazzyHome again. I just want to stay safely cloistered here. Away from an unfair and unjust world that judges people based on age, appearance, and challenges. I know that isn’t feasible, or perhaps even fair. But just the thought of leaving creates anxiety and deep pain in my chest. I certainly never, ever want to go back to #SwanseaGrand. It proved that it is anything but. In America, with its more fair (at least to me) justice system, I would have recourse. I would contact an ambulance chaser and I go after them. I’d win too. And that would at least give me some sense of justice and closure. But in the UK, the client has to badger solicitors just to get the most basic of things done. Hell, there isn’t even justice for a young woman raped and murdered by a sitting police officer. So, what hope is there of any justice for a neurodivergent family trying to have a nice night out at their local theater? And I’m back to never wanting to leave our @HomeCrazzyHome.
My only real choice is to write about this latest ableist, classist, adultist trauma to strangers on the internet. Maybe one of you will see yourself in our situation and feel validated. Know that you are not alone. That you are not imagining this injustice. If the goddess shines on me this blog would go viral. #SwanseaGrand would not only make the restitution that we deserve but would apologize and provide #ActuallyAutistic led sensitivity training for all its staff. That it’s board/committee and #SwanseaCouncil would create inclusive guidelines ensuring this never again happens to another neurodivergent family. Signs would be posted that acknowledge this theater was a safe space for ALL. And oh yeah, they’d put back the carpet on the stairs and oil that door.
Will any of that happen? Probably not. And that’s the saddest part of all. What makes it so hard for the neurodivergent. There is no safe place for this world. No wonder so many of us have social anxiety, depression, PTSD, and other mental illness. No, I don’t believe those are just part of our autism. Those are inflicted on us by this neurotypical world. By, perhaps even nice ladies just doing her job, that nonetheless visit yet another injustice and trauma on us. Is it too much to hope that @PanKwake does not even want to go back there for another Panto? Because that pain just got worse thinking of going back there. Heck, it is likely that I’ll take longer routes to avoid walking past there. That the pain will come back any time I even see that building from a distance.
Like I said, that is some that no neurotypical can fathom. But it is what happens to the neurodivergent every single day. Okay, I’m going to go back to my chair and have a good cry now. Because in all probability that will be all I can do about this injustice.
Self-Directed Learning & Neurodiversity 