#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles, no. 30: April is nearly over, and I need to take a break (for a short while, at least).

Part of a lilac-painted living room with deep purple floor and white skirting boards. Mama Pineapple, a white femme-presenting person with red hair, wearing purple socks, blue leggings and a red, floral patterned tunic top, reclines on a brown leather sofa, one hand held over her forehead partially obscuring her face in a gesture of weariness. There are patterned cushions around her. Her other hand dangles down towards a white mug full of steaming coffee on the floor just in front of the sofa.A thought bubble above her reads “THANK F**K THAT’S OVER!”.

[Trigger warning: mention of suicide, murder, child abuse, sexism, cissexism, heterosexism, racism, gaslighting, social media abuse, “cure” therapies, ABA, ableism, neglect, mental illness.]


We’ve reached the end of April. The end of Autism “Awareness” Month. The end of Autism Acceptance Month.

And it’s been a hard one. I’ve kept my interaction with social media somewhat limited, but have still managed to encounter much that has upset me.

The thing is, “awareness” doesn’t stop after April.

All year round, every single day:

  • Somebody, somewhere, is working on a “cure” for something that isn’t even a disease or a problem.
  • An autistic adult is being told that their views are not valid because they’re “not autistic enough”, or “not like my child”.
  • Elsewhere, a non-verbal autistic person’s needs and views are being ignored because those around them presume them incapable of intelligent thought.
  • An autistic child is getting the feeling that they’re “broken” and not the child their parents wanted.
  • An autistic child is receiving stressful, traumatic conversion therapy to make them “normal” and remove their autistic “symptoms”.
  • An autistic child is becoming seriously ill through being forced to drink bleach or overdose on vitamin C to purge them of “toxins”.
  • Someone is talking, in all seriousness, about “vaccine damage”, and about autism being an “adverse effect” of vaccines.
  • A parent or caregiver is contemplating murder.
  • Somebody, somewhere is telling an autistic woman that they have no business calling themselves autistic because they, and others like them, have caused the diagnosis to be “dumbed down”.
  • Female autistics, autistics of colour, and queer, trans and/or non-binary autistics are being told to “stop making it all about them” as everybody needs support.
  • Somewhere, a media outlet is mocking autistic people and enforcing dangerous stereotypes.
  • A harmful meme is being spread on social media, and autistics are being told to “lighten up” and “get over it” as it’s just a harmless joke.
  • A healthcare professional is delivering an autism diagnosis to the parents of a child, and warning them of all the things that child will never do and explaining all the ways in which they are broken.
  • An advertising campaign is doing exactly the same in a series of commercials, flyers, and posters.
  • An “autism warrior mom” is lamenting her plight and desperately wishing that her child wasn’t such a burden.
  • Another parent is battling educators, healthcare providers, insurers and local authorities to get the support their child so desperately needs, but that is so difficult to come by.
  • An autistic teenager is contemplating suicide because they can’t stand the bullying any longer.
  • An autistic adult is staring at another job application form, wondering whether to disclose or not, how they’ll manage an interview and wondering whether this time they might finally get lucky after so much rejection.
  • Another autistic adult is trying to fend off the overwhelm and overload of working in an environment that’s uncomfortable, painful and overly-demanding of their senses and cognitive function.
  • Yet another is wondering how on Earth they’re going to get the financial support they need to enable them to live.
  • An ill-advised person in a position of power and influence is bemoaning the “autism epidemic” and wondering how on Earth it can be stopped; how autism can be put to an end.

And so much more. All over the world. Every day.

The scourge of “Awareness” never stops.

And so the work to promote Autism Acceptance must never stop. There is so much work to do.

Meanwhile, autistic people are living, loving, laughing, thinking, creating, caring, acting, performing, helping, supporting, advising, campaigning, sharing, uplifting, amplifying, celebrating, commiserating, learning, working, teaching, making, saving, rescuing, mentoring, encouraging, inventing, designing, innovating, suffering, shouting, crying.

Speaking.

And all the other things that humans do.

We’re here. It’s time to accept us, and appreciate us as a part of the world we, and you, all live in together.

Thank fuck April’s nearly over.

But the struggle never stops.

***

As for me, I’m going to have a bit of time off. My emotions, and my hyper empathy, have been, well, hyper, this month. I’ve been up, I’ve been down. And I’m pleased I’ve managed to post an entire month’s worth of images, every day, to do my bit to promote Autism Acceptance and Appreciation. But it’s cost me, as has seeing all I’ve seen (and I haven’t seen the half of it, believe me).

So next month, I’m not going to be around much. I might post the odd thing; but I might not. I’ll see how I feel.

May will be a month of self-care. God knows I need it. And my family need me. My loving husband and my beautiful children will be my focus this coming month. Plus work, and a couple of long-overdue projects that really need my attention.

I’m going to have a rest from blogging, just for a short while.

Ta-ra for now, chums!


[Image description: Part of a lilac-painted living room with deep purple floor and white skirting boards. Mama Pineapple, a white femme-presenting person with red hair, wearing purple socks, blue leggings and a red, floral patterned tunic top, reclines on a brown leather sofa, one hand held over her forehead partially obscuring her face in a gesture of weariness. There are patterned cushions around her. Her other hand dangles down towards a white mug full of steaming coffee on the floor just in front of the sofa.A thought bubble above her reads “THANK F**K THAT’S OVER!”.

I’m very sweary, and would normally quite happily not star out the swear words, but I’m hoping doing in the featured image so might help the circulation of this a bit.]

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It’s never all bad.

[Author’s note: I’m publishing this post almost simultaneously with a previous one because I had both stored up as drafts in my paper notebook, but hadn’t had sufficient “get-up-and-go” to publish them until now. This is the more recent of the two.. However, I felt that the other post was sufficiently time-specific to need publishing pretty sharpish; hence, a buy-one-get-one-free, one time only offer.

Trigger warning: mental illness.]


It’s only dawned on me over the past few days that I have recently become horribly depressed.

In recent years, I’ve grown so accustomed to anxiety being my particular mental illness du jour that this particular “episode” has caught me unawares. The gloomy weather front had been advancing, but I’d continued to try to play in fading sun, in denial of the specks of mental drizzle and the occasional gust of despair – forcing myself to soldier on, like an anorak-clad British holidaymaker building sandcastles on a rainy, windswept beach.

But the feeling that I’m “not good enough” is unmistakeable. The veering between floods of tears and experiencing a desperate need to cry without being physically able to do so. Even all the beautiful detail around me seeming, on occasion… somewhat flat.

I’ve been here before.

I’ve been ground down. One too many instructions to “just try and keep your reactions under control” in the face of the near-constant sensory onslaught, extreme distractibility and utter breakdown of executive function that come with being an autistic parent off work for three weeks of the summer holidays and contending with the looking-after of a five-year-old and a toddler in the throes (though he’s not reached the official age for it) of the “terrible twos”.

An awareness of A-level results being received, and the recent discussions about “giftedness” have caused me to mentally reframe much of my lifetime thus far of academic experience. And the anger has been building and building and building over all the things I didn’t achieve. All the times I felt I “wasn’t good enough” when I wasn’t playing on a level field. And I didn’t even realise I wasn’t.

I’m self-aware enough these days to recognise that the “not good enough” feelings are untrue, inaccurate, unfounded. But that doesn’t stop the anger and sadness.

And yet, it’s never all bad.

I’ve spent a day on my own. My husband and I agreed that I needed at least a couple of days entirely to myself during this final week of the holidays,

And as always, as I go about my day, I continually experience reminders of times gone by: scenes; sounds; images; smells; snatches of speech. Triggers of past memories. And though my current prevailing mood shares its similarities with those of dark times past, I can’t help but experience some pangs of nostalgia for those times. Fondness, even.

Right now, so many of the clothes I see in shops, and worn in particular by young people, are in styles that last saw the light of day when I was a teenager. I see young people in their teens and early 20s, kitted out in uncannily familiar garb and hairstyles, and my heart goes out to them. I feel compassion, admiration, wry amusement, wistfulness. But also hope. They have so much of their lives ahead of them, and I desperately want to believe that none of them are experiencing the pain I felt at their age.

And yet to say it was constant pain does my entire life a disservice. For all the years I was depressed, I still experienced joy, laughter, companionship. Long deep conversations, or just ridiculously amusing ones. The excitement of gigs and festivals. Band rehearsal camaraderie. Bright, golden sunlit days. Starry skies. Euphoria. Dancing. And oh, so much love.

During my formative years, I struggled with my sense of true self. I still do. Womanhood and femininity still come awkwardly and unnaturally to me. And yet, I have always been me, deep down, Any sense of self I did have back then was distorted by lack of self-knowledge and yet…those years were still formative.

And despite any pain, I still had so much fun. Sincerely.

It’s never all bad.

Any spike of fun a person has during an extended bout of depression does not negate the experience of that depression. It’s not a flatline. But that doesn’t mean it isn’t still hard to bear.

I had a great day. A lengthy morning gym session. Towards the end of that, yes, I did feel the pricks of tears that wouldn’t come. It took a long time to get myself showered, dressed, and home.

But then I was out again. Gin and tonic and tapas for lunch, and an unexpected kindness from a long-not-seen friend. The necessary evil of a bit of shopping, and then a lone trip to the cinema. I revelled in the darkness of the theatre. The film, Detroit, was masterful. Harrowing. Shocking at times. Tears welled in my eyes as the ending approached. But one doesn’t always need levity and glee to be taken out of oneself. I was immersed in something other than my own gloom for over two and a half hours.

And I returned home to my family. I cuddled them, made them tea, and played makebelieve with my daughter. We visited a haunted house.

I’m still, in the grander scheme of things, depressed. But it’s never all bad. Today was good for me. 


[Featured image: bright green, somewhat “architectural” foliage – stiff, long leaves with sharp pointed tips and veins that firm concertina folds along the entire lengths of each frond.]

Picture this.

[Author’s note: I’m publishing this post almost simultaneously with a subsequent one because I had both stored up as drafts in my paper notebook, but hadn’t had sufficient “get-up-and-go” to publish them until now. This was written a few days ago, and it doesn’t quite fit my current mood – the accompanying post does. However, I felt that this one was sufficiently time-specific to need publishing pretty sharpish.

Trigger warning: mental illness, post-traumatic stress disorder.]


I’m writing this post with Blondie‘s ‘Picture This‘ playing on repeat in my head.

The copy of the song that I hear on my mental jukebox is the one on the secondhand vinyl LP copy of Parallel Lines that I bought during my second year of university. Scratched in parts, though not sufficiently damaged for the needle to jump. I can hear the particular qualities of my specific vinyl copy, with its fuzzy warmth and minor quirks, gently filtering the instrumentation and Debbie Harry’s vocals.

It’s in my mind because I had a documentary about the making of Parallel Lines running on the television as a soundtrack (preceded, no less, by a selection of 80s hip hop classics) to my reorganising of my CD collection following a redecoration.

But the documentary evoked so much more than simply the sound of the song.

I am at the opposite end of the visualisation abilities scale from someone with aphantasia. My visual imagination – nay, my three-dimensional, multisensory imagination – is piercingly acute, and at times seemingly all-encompassing. It can be as if I’m experiencing parallel worlds, alternate realities, or times long past, but not actually in parallel; one world is overlaid upon another. I experience both simultaneously.

I suppose it’s something like being a cyborg, a networked human, a ‘ghost in the shell‘. Simultaneously processing both what’s in front of me and also another, different but no less potent reality that exists, and is experienced, in a different portion of my mind.

Over a year ago, I was walking my daughter to preschool. It was late spring. Something about the quality of the crisp spring air, the golden glow of the sun still low and yet bright in the sky, the cold-warm piecing blue of the sky, led me back to an early-morning walk along the seafront of Thessaloniki, Greece at the start of February, 2011. I was both there, and walking my daughter to preschool. Both realities existed, there and in that moment.

Sometimes, the recollected worlds that overlay my present-day, real-time world are far less pleasant. For several years after breaking up with an emotionally and financially abusive previous partner, there were times when I really, honest-to-goodness, lived back in that council flat. The terracotta walls of the living room. The overly firm, overly shallow, institution-blue council issue sofa. The clunk of the door to the controls of the enormous floor-standing combi boiler. Clothes soaking in the bath for want of a washing machine. The cloying stink from the rubbish chute. The nightly whirr of the police helicopter in the sky above the estate, and the constant undercurrent of fear.

Those flashbacks often brought tears to my eyes. I felt like I was there. Again.

This evening, I went for a long walk. It grew dark as I paced the streets, ‘Picture This’ playing over and over. I bought Parallel Lines not long before the beginning of my biggest ever depressive episode. And it’s sad to think that so much of the music I love was purchased at a time when I was so sad. As I walked, I was back in my ground floor student bedroom, the living room of a terraced house poorly converted into sleeping and study space. The lime-green throw on my bed. Threadbare carpet.

I was so lost, back then.

Towards the end of my walk I passed through one of the local “student villages”. And although my own first-year flat was nothing like as luxurious, something about the landscaping, the carefully laid out paths and highly geometric medium-rise accommodation blocks, brought back the pleasant, sweet-sour smell of the glue on university prospectuses; the weight of each of those thick, wide, rectangular tomes, and the sheen of their covers.

It’s August, after all. All across the country, many will be preparing to leave home for the first time, with or without their anticipated A-level grades, whether or not to their original educational establishment of choice. I remember that feeling of anticipation. The anxious wait for something new. Something that just had to be better than what I’d experienced in life so far.

And I felt angry. I so often do these days. And desperately sad. Because whilst my life has, in many ways, been a good life, so much has not been the way it could, or should, have been. And whilst regrets are a waste of time and energy, I can’t help but grieve for lost opportunities, potential not reached, support neither given nor received.

Since my last post and the resulting comments, and after reading another author’s subsequent blog that references it, I’ve been thinking wistfully about my education. My years lacking in confidence. My years of self-doubt and shaky self-identity. And I think to myself: I wish it hadn’t always been so bloody hard.

I wish I’d known who I truly was far earlier in life. I wish I’d known far earlier in life that it was okay to be me, and to be the way I am.

My night-time walk, like so many before it, took me along streets lined with tall, mature trees. Occasional flashes of bright, vivid green leaves picked up by streetlights directly overhead. Noises from houses. My own footsteps, the sound of my breath, and the slight feeling of strain at my hip joints. My need to move my arms vigorously, coupled with a nervousness about doing so in a public place, no matter how late the hour or how empty the street.

Every time I must take myself out of the house for a walk, I am reminded of those countless other occasions just like this one. The worlds of those other space-catching, breath-catching walks layer and layer over my present world. Not all of them are distinct memories, of course, but the sense I get from each one is played out time and time again.

My walks sometimes clear my mind. Sometimes, they fill it. They may soothe my tingling, fizzing body’s need for “something” other than an indoor environment. And they may ease my pain in some ways, whilst also making more acute that other, remembered pain.

And as ‘Picture This’ plays over and over in my head, I’m reminded of just how often I’ve striven, and struggled, to find myself somewhere on those tree-lined streets.


[Featured image description: grainy, heavily filtered (blue end of colour spectrum) photo of a set of mostly-empty CD shelves, with piles of CDs stacked immediately in front of them, awaiting sorting and re-shelving.]

One year on

It’s a whole month since I last wrote a blog post, which seems an awfully long time. A couple of weeks ago, I celebrated one year since it was formally confirmed to me that I’m autistic. I’d been intending to write about it around the date of my “autiversary”, but I’ve been pretty short on time recently. And now it’s a while after the fact, and whilst I’d like to write some kind of lovely creative piece, the truth is, I need to get myself back into swing of things by doing a bit of self-reflection. This post is probably going to be more for my benefit than for anyone else’s, therefore.

A year since diagnosis seems a far more apt time to reflect than the arbitrary calendar shift that occurs from December to January. An autism diagnosis, for an adult-diagnosed autistic person who’s spent most of her lifetime not knowing such a fundamental fact about herself, is a pretty bloody significant milestone to mark.

A lot has happened to me in recent months, autism-wise. Back in May, I had an article published in the Times Higher Education Magazine about my experiences as an autistic student (albeit undiagnosed at the time), and education developer. It was a re-working of a post on here, and the response to it was pretty overwhelmingly positive. I’m now in touch with a fellow late-diagnosed autistic woman in my institution, and we’re looking into setting up some kind of peer support group for autistic staff. Before that actually happens, I’m just looking forward to having coffee with her, and just “being autistic” with someone else who understands.

Last month, I took part in an awareness event organised by our Medical School, featuring a performance of an original play on autism and being different by Spectrum Theatre Sheffield. I took part in the question-and-answer/panel discussion that followed the performance, alongside members of the cast and a (neurotypical) representative of a local charity (who I won’t exactly say hogged the discussion, but, well, never mind. On the whole, it was all bloody fantastic).

In September, I’m running a workshop with a bipolar colleague on neurodiversity and enterprise education at my field’s biggest annual international conference.

I’m open about being autistic. I’m out there. I’ve added the #ActuallyAutistic hashtag to my work-focused twitter profile. It’s a risky business, but to me it makes complete sense. I can’t be other than who I am – and once you realise who you truly are, after not understanding for so long, how can you ignore it or turn back?

And I’m lucky to say that only very rarely has anyone looked down on me or patronised me (I might write something about this at some stage, but I’m staying upbeat for now). Most people seem to be politely interested. Perhaps that’s simply a reflection of the circles I move within.

I’ve experienced nearly a lifetime (so far) of self-doubt, faltering and dissolving confidence, impostor syndrome, and inferiority complexes. I’ve never been “good enough”. And even though my diagnosis has been liberating, it’s also made me put myself under the microscope once again, scrutinising my past experiences, behaviours and reactions anew. I sometimes find I question my actions in a far more extreme way than ever before, despite my determination just to relax and be myself more than ever before. But this has also been one of the most God-damned life-affirming, validating years I’ve ever had, from a professional and personal perspective (let’s just ignore world events for now, yeah?).

I’ll probably reflect separately on positive work stuff and the cool things I’ve learned recently about how my autistic brain works, but for now, it’s enough to say that I’m not special. No-one is. But for all the challenges I’ve faced, the traumas and indignities I’ve suffered, and the pain I’ve endured, I wouldn’t change who I am. I actually like who I am, right now. It’s taken a long time to get to that point, but I’m here now.

And I can keep moving forward, whilst valuing the world I’m in right now.

[Featured image description: park on a bright sunny day, with blue sky, people playing, sitting, or lying on the grass, colourful flowerbeds and lots of trees.]

To an autistic girl

My dear, wonderful girl

You had a feeling you were different. And now you know for sure. Your brain works a little differently from those of many people around you. And at times, you don’t know what to make of that.

Does it change anything, or does it change nothing?

You’ve been given this label. You’re autistic, or you “have autism” (I’m going to use the first of these phrases from now on, but you might have heard it referred to the second way in the past).

Perhaps you’ve known about it for as long as you can remember. Perhaps your family recently told you about it. Or perhaps you’ve just been given your diagnosis firsthand.

But it may not have been the only label you’ve been given.

Childish. Away with the fairies. Lost in her own world. Space cadet. Scatterbrained.

Bookish. Shy. Nerdy. Geeky. Weird. Kooky. Quirky. Eccentric. Odd.

Naughty. Challenging. Difficult. Disruptive. Defiant. Lazy. Stupid.

Exasperating.

Some of these labels you may have given yourself. Some might have been foisted upon you by other people. Some of these labels were upsetting for you to hear. Didn’t they understand? It’s not as if you meant to be way you are. It’s just always seemed harder for you to do what comes naturally to others. Why do they seem to cope so well? How do they make just being look so easy?

I may now be grown-up, but I speak to you as one autistic girl to another. I’m writing to you because I remember, and I understand.

I remember the dread at the start of a new school day. The screaming, roaring noise of the school corridors. The flicker of fluorescent lights. The crowding. The jostling. The shrill, jarring rattle of the school bell. The searing cold of the school playground.

The desire, sometimes, to be completely alone, unbothered and undisturbed, and at other times, to be part of the group and able to talk to others in a way I just couldn’t.

I remember my utter, unbounded fascination at some subjects, and my complete lack of interest in others. I remember my feverish interest in a new idea. I remember my thirst for knowledge and desire to learn that were so much at odds with my desire simply to “fit in”.

I remember the sudden floods of tears. The all-consuming frustration when I felt clever enough to do my homework, but somehow just couldn’t get started. The embarrassment of misunderstandings, of getting something wrong, or reacting to something in a way I “shouldn’t”.

I remember going home every single school day feeling exhausted.

The thing is, back then, I didn’t have the knowledge that you now have. I didn’t realise that I was autistic. It would have explained so much.

It can be shocking to find out that there’s a “medical” reason for why you think and feel so differently from the people around you. But it can also be a useful thing to know. It’s powerful to truly understand why you are the way you are, and why “the way you are” is actually okay.

It’s okay to be different.

Perhaps you don’t agree with me about that right now, but I hope that one day, hopefully soon, you will.

And as one now-grown-up autistic girl to you, an autistic girl with so much life ahead of her, I’d like to share a few things with you.

There’s no one “right” way to be a girl.

Maybe you’re into princesses, ponies, or fairy wings. Maybe dinosaurs, reptiles, or bugs are your thing. Maybe you love sport. Or dancing. Books. Music. Coding. Painting. Writing. Lego. Construction vehicles, trains, or spaceships. Or any combination of any of these things, and much more besides.

Perhaps you love makeup and hair accessories. Sparkly things. Pretty dresses. Perhaps you like baggy trousers and hoodies. Doc Martin boots or trainers. Perhaps you love fashion. Perhaps you aim to dress as alternatively as you possibly can. Or perhaps you just need to be comfortable.

Maybe you like boys. Maybe you like girls. Maybe both. Or neither.

Whoever you are, and whatever you’re into, your version of “being a girl” is just as valid and meaningful as any other girl’s.

There’s no one “right” way to be autistic.

All of us who are autistic have some things in common. But just like any other human beings, we’re all different. We don’t all share the exact same traits, or the exact same strengths and weaknesses. The spectrum isn’t linear; it’s three-dimensional. Autistic is part of who we are, and it’s a big part of who we are. But it’s one part of who we are.

You may not be good at the things autistic people are “supposed” to be good at. You may have powers or skills that defy the stereotypes. You may have some enormous strengths and some enormous struggles. You may find everyday living immensely difficult. Or you may, quite simply, be kind of average and seemingly unremarkable.

But there will always be some good things about you. That is inevitable.

You are here, you are valid, and you are you.

Own your label.

It’s yours. Be proud of it. Be proud of who you are. At times, you way want to shrug it off, deny it, or keep it from others. That’s up to you, and only you.

Don’t think of it as an excuse. It’s an explanation. Some of us autistics are very disabled by the way our autism manifests itself. Some of us feel that our very real disabilities come mainly from living in a world that wasn’t built for us. Others do not think of themselves as disabled at all. But we can still use our label to explain.

That autistic label is still yours. Many of us, myself included, are far happier for seizing hold of that label and really, truly making it ours. I hope you will too.

Life may not always be easy.

You’re living in a world that wasn’t designed for people like you. Maybe school has already been tough, or maybe you’ve been well supported and protected so far. But there will be misunderstandings, confusion, overwhelm, sensory overload, and meltdowns, no matter how much you try to avoid them. There will be people who don’t understand you. People who don’t believe you.

Maybe you’re disabled in other ways besides your autism.

The colour of your skin, your religion (or lack of one), your name, the country you live in, the school you went to, the place you grew up… all these parts of who you are might mean that things are even harder – or even easier – for you.

But stay true to you. It’s easier to be happier if you do.

And know that there are others like you.

Maybe you’ll meet them at school. Maybe in the park. Maybe at a youth group, or maybe at a family gathering, a band rehearsal, a community event or the sports field. Maybe you’ll meet them online.

It might take a while.

But there are others like you. And they’ll welcome you. They’ll understand you, support you, and celebrate the fact that you are you.

When I discovered who I was, and found others like me, I was welcomed too.

And I welcome you.

From the bottom of my heart.


[Featured image credit: “heart bokeh2” by sure2talk. Featured image shows a large number of small, monochrome, love hearts of various hues of grey, on a black background.]