Tuesday 31 May 2016

Untitled / insomnia

I found this sat in my drafts folder from several months ago, when I was working full time at a very unsociable job in an unsuitable location in a sensorily overwhelming office . I am currently in bed, my tummy full of nourishing dinner, relaxed and preparing to start a day at my new job tomorrow, where I am supported and valued, and able to not only deal with daily stressors properly but also motivated to work hard . At the time that I wrote this, I was having up to ten meltdowns a day and often eating no more than a few mouthfuls of food because the stress was making me so sick. I was having dire, dark, depressed thoughts . I'm much better now; the piece below doesn't even feel like my writing. I'm as autistic as I ever was but I'm able to cope with the demands of my new job whilst learning to code on the side , working on my designs , and seeing my friends . And I'm having much fewer meltdowns ! My office is centrally located, well lit, and my team are supportive and deal with my autistic traits but also value my strengths that I bring to the company. 
The reason I'm publishing this is because I want to demonstrate how my "functioning" levels and ability to cope in the world have waxed and waned according to how well my needs were accommodated and supported. I also want you, the reader at home; the autistic reader; the reader with an autistic friend, partner, or relative, to know that it does get better, even when things seem incredibly frightening and dark at the time. 

When allowed to exist comfortably the body and mind are capable of many things . But we are contorted into dreadful unnatural shapes. We bend. Then we break and we snap. Everything is too much. Other people's feelings are too intense . It is too warm and there are too many things to do today. I feel sick at the enormously infinite possibilities . With no innate way to predict people's reactions I take the safe option and assume a defensive position in case they get angry . I am permanently curled into a ball it seems . I am tired. I don't get to enjoy my free time any more , it's simply hours of preparatory resting up so I have the mental fortitude to deal with going to work. I feel incredibly alone . I don't wish I felt less emotion, but rather that I wasn't trapped contorted into this unnatural position where I am obliged to be exposed to things that make me feel terrible . That is an ableist society, simply put. 

A

Monday 9 May 2016

Let's talk meltdowns!

Meltdowns are just tantrums, right ? Wrong . There's a lot of misinformation out there about what a meltdown is and what it's actually like . Or rather , there's information out there that explains to you what a meltdown looks like in a small child who hasn't yet developed the self awareness and coping skills that an autistic adult posesses .

As an autistic adult who has meltdowns , I've been meaning for a while to write about what it's like for me to have one . However I kept forgetting what to write . Luckily for me I actually had an horrific episode right before work on Friday so it's fresh in my mind to write about today ! Hooray ! 

Okay. To start with ... My autistic brain is really really sensitive to sensory data . When I say sensory data what do I mean ? I mean basically all the input from the outside world . I'm sensitive to bright lights. I get overwhelmed by noise . I'm overly sensitive to the moods of others and the vibrations that they give off and that's why I often find it difficult to understand what people are saying - they're giving off all this conflicting information from their face and their words and their body language that doesn't reflect what they're saying at all. I'm so over sensitive to clothing texture that I mostly just dress in comfortable things , as uncomfortable clothes like a pair of tights will push me further towards the threshold stress level to have a horrible meltdown . It's often a lot of smaller triggers that lead to the huge episode of a meltdown , like bits of kindling catching alight then cumulatively making one huge fire .

Friday was an example . I'd had nightmares and woken up rattled already. It was hot - so very very hot . It didn't help that I had stupidly chosen to wear a thick jumper outside when I had to run down to the doctors for an appointment before work. I was stood in the chemists waiting for prescription and it was so hot and I was so aware of how oily I was and my clothes felt horrible and the pharmacy was so full of people who were as agitated as me having to wait in the heat and just ... At this stage I felt my psyche snap like an old rubber band . Like your computer when it gives you blue screen of death . My brain entirely packs it in, it's terrifying , it's embarrassing, and I jus want to scream until my lungs burst then go to sleep. 

I don't scream though . I'm an adult and the social cost of meltdowns is too high . I didn't want to frighten anyone in the pharmacy . So I just mentally imploded . And then I had to do an eight hour shift at work. I didn't dare call in sick. So I continued to mentally implode slowly over the course of a day while trying to not let on how exhausted I was from trying to navigate the office and the people whilst having a meltdown. Then as soon as I got home I sobbed my heart out for hours on end . It's traumatising to go through , similar to a panic attack. And after the meltdown is over I'm absolutely wiped out and aching ... It's actually like a hangover , except with a hangover you can look back to the night before and concede that it was maybe worth it because you had fun. But post meltdown hangover feelings are god awful because I'm propped up in bed , my brain is carrying on as usual and wants to watch movies and read books and run errands , but when I open my mouth I can't talk. Or rather , I can say short sentence fragments and words but I can't put together anything longer and a conversation with another person becomes really laboured . I have no energy to do the things I'd like to. It is frustrating to look back and realise I could be feeling well enough to do all those things had I not had the meltdown, but I can't be angry at myself because it doesn't get me anywhere . I have to be kind to myself, to rest and recuperate until I'm back to my usual self . And try to avoid what triggered it in the first place . 

I see a lot of stories in the media humiliating autistic people for having meltdowns , and it sucks, frankly. It deeply, deeply sucks. Susan Boyle recently was made fun of by the press for having a meltdown at the airport, and subsequently forced to apologise for her reaction to an incredibly stressful environment. I don't blame her for it at all! The airport is so unnecessarily stressful and I've certainly snapped and yelled at my poor friends and family members in airports over the years because I could. Not. Cope. Then there's those voyeuristic videos that parents seem to love to put online of their autistic kid having a meltdown. I don't understand why they do it ! You would never put a video online of your child going into anaphylactic shock , or a hyperglycaemic diabetic episode , so what makes this okay ? Meltdowns are embarrassing and neurotypical people really need to respect and understand that an autistic person publicly "kicking off" is not done on purpose to get their own way , and they'd rather not be in the position where they're in public visibly having a breakdown. We've got self awareness and feelings and still want to present ourselves well to people . 

I also worry , too, about an autistic adult's public meltdown being taken as a threat . I worry about a frightened person who needs space to calm down instead being treated with brute force at the hands of police or security , because they can't understand the behaviour at all. The repercussions of this are obvious and horrifying and happening right now , a quick Google search will yield countless headlines detailing harrowing acts of brutality dealt out against some of the most vulnerable in society. 

Meltdowns aren't funny and we don't have them on purpose . Causing an autistic person to have a meltdown on purpose is messed up and will definitely ruin the rest of their day, if not their week. And just because someone's behaviour seems a certain way , it doesn't mean that's what is going on in their head . I propose that we move away from this top-down approach where behaviours are only seen as behaviours, and rather work to understand the emotions that lie beneath.