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. 


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. 

Wednesday 2 March 2016

The autistic women's checklist


Sorry, I didn't write here for a long time. There were a series of upheavals in my personal life and the words dried up. The words are back now.

Now I've been diagnosed as autistic, it's led me to start wondering: who else ? How many other women are out there, just feeling a bit out of place but not knowing why? I've spoken to and read of countless women and girls who weren't diagnosed til their thirties, their forties - even their FIFTIES! It seems so unfair that you could go your entire life, through relationships, higher education, even starting a family, always feeling like you don't quite belong.

As is evident, though, more men and boys are diagnosed than women. This is largely due to gendered socialisation. Women who are autistic are often conditioned to behave in a way that is seen as more agreeable and compliant - as all women are - and this means that their issues with sensory overload, or listening comprehension, etc. may go unnoticed simply because of their coping mechanisms.

I honestly cannot relate to half those checklists you see online when you google "Oh my god, Google, do you think I have Asperger's syndrome? How did no one consider that?" or whatever you type into that search bar.  I highly suspect a lot of women don't either.

That is not to say that NO autistic women fit the current criteria, because of course they do, and you're perfectly fine if you do. Not to mention that this list isn't exhaustive at all, partly because I have a bad memory and partly because autistic people are all very different from one another. Shine on my beautiful autistic diamonds!

For ease of reading - I have italicised sentences / longer paragraphs where I give anecdotal examples from my own life. These may resonate with you, they may not. 

  1. Do you often feel low-level irritated or uncomfortable throughout the day? (at work, college, wherever) You might know what the source of the discomfort is (for instance, I absolutely hate the feeling of having my feet constricted, so wearing socks and shoes stresses me out) , you might not. It may take you a while to realise the source of the stressor until you make a change that significantly reduces your stress levels.
  2.    Do other people cast you as grumpy, or rude, when you don’t think you are either of those things particularly?
  3. Do you copy other women a lot because you don’t know how to act? When I say other women, I refer both to women you see in the media and women you know as peers. When I was younger I was always craning my neck around to see how other people were behaving / talking/ moving at discos and parties, now as an adult I tend to find myself somewhat imitating various screen sirens when I don’t exactly know how to deal with a situation.
  4.  Do you have Irritable Bowel Syndrome (IBS)? Does it seem to come on randomly ? IBS is really common when you’re autistic, probably because you’re so sensitive to absolutely everything. My body’s reaction to most stress is nausea. Not slept? Nausea. Watched a really stressfully horrible film? Nausea. Had a bumpy bus ride that took ages? Nausea. You get the idea.
  5.   Do you feel like, when you speak to other people, they often hear the words you say as something completely different? Do their reactions stress you out? Do people often get annoyed or angry with you and you can’t quite work out why? Does it lead you to feel like you’re a mean person, even when you haven’t really done anything that bad upon reflection.
  6. Whether or not you make eye contact, do you find it unpleasant or distracting? Again, autistic women are pretty good at pretending stuff that bothers them doesn’t bother them, so this refers to you even if you are ABLE to make eye contact but you just hate it. I don't make eye contact with any of my friends when I talk to them, but for the sake of social ease I deploy a number of tricks in the work environment to make it look like I'm looking at people. I find eye contact very distracting.
  7.  Do you find it hard to gauge the intensity of someone’s emotions? For instance, when someone is a little irked or annoyed, do you tend to assume they’re very angry, and react accordingly?
  8. Did you get bullied a lot, but you didn’t quite know why? Do you get bullied as an adult ? I have spent long periods of time being bullied by other girls in social groups, in a way that was done carefully so that I would look like the bad person for reacting. Other people tended to stay quiet about the bullying. 
  9. Do you find learning trivia about something (such as a sport, a film, a band, etc.) as much fun as the thing itself? Or more fun?
  10.  When you really like something, do you find it quite intense? Does it seem like other people are as enthusiastic as you about their hobbies? Do you want to talk and think about that hobby all the time? I say “hobby” but I could mean a band, a sport, a fashion label, an academic discipline, a place …
  11. When you talk to someone in your natural style about something you’re super-interested in (see above), do you feel like you can tell when the other person is genuinely interested, or frustrated, but you feel unable to stop yourself either way because you feel so intensely about it?
  12.   Does interacting with your friends, no matter how fun it seems, become quite tiring? Do you need to relax for a while after you’ve gone for a casual hang-out? For me, even going to see a friend at their house for the evening or going to the pub means I need to lie down for a while after to recuperate.
  13.  Do you feel like, even though you’re smart and able to understand concepts, it takes a while to process what someone’s said to you in person? Is writing easier*?

    (*note: obviously this doesn't apply to everyone, and being autistic doesn't make written communication suddenly easier. You may also be dyslexic which can affect your writing comprehension, or you simply may struggle due to motor / processing problems. Myself and many other autistic people find communicating via text easier than verbally, but that doesn't always mean it's stress-free).

  14. Do you fidget a lot? I clap a lot! I clap when I'm amused, I clap when I'm stressed, I slap my legs, I move my feet constantly, I pull faces.
  15. Do you find you cook the same meals for yourself all the time, because it limits how stressful  the act of cooking is?
  16.  Do you get very overwhelmed by other people’s feelings? Do you often withdraw from people because their feelings are too painful?
  17.  Do you find that people are disingenuous? Do they talk patronisingly to you? Did it take you a while to realise that people’s intentions can be bad? For me personally, I feel like I have strong gut instincts about people, it's just that I don't always know what to do with them. Not to mention other people often can't pick up on the same signals as I can. I know when I'm being made fun of, I just don't necessarily have the social gravitas or the tools to do much about it.
  18.   Do you find lying difficult? I find telling lies difficult because I can feel the infinite possibilities of what I could say, and then I can’t just choose one option.
  19. Did you ever feel like maybe you were an alien, or a character in a book, because you felt so different to everyone else?
  20.    Do you feel like animals are easier to get along with than people?

  21. What about your friendship groups? Do you have fewer friends? Do you tend to have one or two “safe” friends who you prefer to do things with ? Do you find it a bit stressful to navigate socially when there’s a large group of friends?
  22. When you go out clubbing, do you often drink too much alcohol and feel sick / embarrassed about what you may have said or done?  Autistic women often want to go out, either for their own enjoyment or due to social pressure, but find it stressful. They may combat this with either alcohol or recreational drugs. I notice a pattern whereby, any time I go out in the evening with a group of people I'm not familiar with, I end up getting extremely drunk extremely quickly to try and cope, and then I throw up at some point. However, when I go out with my girlfriend or a close friend, I feel less of a need to do so. 
  23. If you’re of graduate age: After university, did you find that things suddenly became extremely hard , where they hadn’t before? Did you feel a bit like someone threw you in the deep end of a swimming pool and you just had to sink or swim? 
  24. What about your clothes? Do you find makeup on your face stressful, whether or not you choose to / enjoy wearing it? Do you find yourself changing your dress sense to be more comfortable?  Do you style your hair to be more low- or high- maintenance? For millions of reasons, autistic women often are able to mask their sensory discomfort, exacerbated by things like scents and makeup and uncomfortable clothing – myself included – but when you think about it, do you suspect you find it more uncomfortable than most people do?
  25.  Were you a happy young child? Did you start to only become anxious and sad when you had to enter into the real world? Do you find that once you’re alone doing your own thing, it’s good, but other people’s micro-reactions to you make you feel depressed or anxious? 
  26. Have you had a lot of mental health issues, or dealings with mental health services? I say this for two reasons:  firstly, autistic people tend to have been through a lot of trauma at the hands of their friends or family, or even just the stress of not feeling supported or understood in a world catered to non-autistic people; this is enough to affect your mental health. Secondly, a lot of autistic traits – like apparent mood swings, meltdowns, obsessive behaviour  - can get misinterpreted as purely a mental health issue, rather than as signs someone’s autistic. It is suspected this happens more to women than men. Case in point, I spent years being bounced around different mental health workers , being assessed for depression and anxiety and mood disorders , and trialling a wide range of medications, until I received a formal autism diagnosis. 
Thank you for reading this, I hope it helps some of you. 


Thursday 11 February 2016

Walk walk fashion baby

This one is less about being autistic - although that permeates all aspects of my being . I've been getting back into the swing of pattern drafting and designing lately . 

As a child I was devouring fashion magazines. I knew all the names of the designers I couldn't even pronounce yet. I was always so blissful in fabric shops -- mum taking me to dunelm was probably like going to the park for other kids ! Added with the fact that I'm quite good at visualising shapes and patterns together , I always wanted to go into fashion. But I didn't . I think I was too afraid . But you're no good with money. You can't plan ahead . You're no good at talking to people how would you network? (It turns out that online I can do it quite effectively).

I've been thinking about empowerment and autonomy and what that means to autistic people recently, and not believing everything you're told about what you can and can't do. This is what I love and I should follow what makes me happy .

Anyway onto my work... I'm drafting up mission statements, sewing patterns and logos for my own independent fashion label. Almost an end product of my current interest in science fiction , a genre I had never gotten into thinking that it was a total boy's club , the core fashion collection will consist of six or so key pieces inspired by the sci fi women I would love to hang out with . Ripley. Pris. Princess Leia. The Diva from the Fifth Element . But made less nerdy and reinterpreted as cool street- and clubwear. I am nervous that my executive dysfunction, coupled with burnout periods during which I am unproductive, will be my downfall. But I'm excited and I'm hopeful that I can weather it.

Here are some notes, designs , samples and process images: 

I quilted that fake leather and it's not too bad at all for my first time ! 


Sunday 24 January 2016

Neurodiverse , not "anti-cure" : a false paradigm

People and publications will tell you that autism is a disease . They'll tell you it's bad parenting or epigenetics or vaccines depending on the current trend ... Funny isn't it how the supposed "cause" changes on a whim depending on who we are meant to blame for society's ills at any given time ? Firstly it's emotionally frigid mothers , then it's Big Pharma... I'm honestly wondering who is going to get blamed next ! 

Sorry to put a spanner in the works but autism isn't a disease . The autistic mind is just another natural variation of what a human mind is . Doesn't need to be a cause. 

We have a need for "autistic " or "Neurodiverse" to exist as a category , still, but for other reasons, like being able to talk about our lived experiences from a fixed point , and to work towards self advocacy, better healthcare, et cetera. This does not make "autism" a disease by default just because we put a name to it. 

In the press people talk about autism having "no cure" , or people are asked whether they are "pro-" or "anti-cure". I am not either . Why is that ?

Because it's not a disease or a disorder. 

By saying that I'm "anti" an autism cure, I am entering into and engaging with a false paradigm, one that suggests that being autistic is to be in a pathological state , whether or not one wishes to see it cured . It's time to blow this bullshit wide open and understand that autistic people have problems because of society and not because we are somehow sick or deficient in any way.


Sunday 17 January 2016

On eye contact

I am still listening when I don't look at you . Eye contact distracts me from the content of your speech . To me eye contact is as off-putting and physically uncomfortable as if neurotypical people suddenly decided that it was de rigueur to fill one's bra with freezing cold water prior to leaving the house in the morning . So much to contend with around me in order to pay attention to the details of the conversation, let alone even structure a response.


Sunday 10 January 2016

My voice is too loud and it hurts my throat

A mind that wants to paint in watercolour but can only create images in intense thick oil paints . Which are the ideal medium for many messages but not all. A voice that wants to speak softly and evenly like an old Hollywood actress but my larynx and other parts betray my wishes . I can only exclaim loudly, in a tone of voice that doesn't sound natural . My voice is too loud and hurts my throat . "Use your indoor voice" . It is impossible .