#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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I wear sunglasses to deal with the noise.

Wearing sunglasses helps me cope with noise.

And yes, I do mean noise in an auditory sense.

But this doesn’t have anything to do with synaesthesia which, to the extent I’ve analysed myself and my perceptions of the world so far, is not something that I experience.

Over time since my diagnosis, I’ve reflected and reflected and reflected. And I’m now firmly in the camp of supporters for the Social Model of Disability. I’m happy to come down on the side of the fence that says “I am disabled”, but also that “I am predominantly disabled by being in the environment in which I happen to find myself”.

I’m also convinced that a) I’m more disabled now than I used to be, but that b) – mostly – this has nothing intrinsically to do with me physically, or me as an individual.

Why does wearing sunglasses help me cope with noise?

I’m surprised by how much noise bothers me these days. It never used to bother me to the extent it now does.

I cringe and cower at ambulance sirens and the violent brake “sneezes” of buses and heavy goods vehicles.  I clap my hands over my ears in anguish at loudspeaker crackles, shouting, and school bells. I ram my fingers into my ears as I walk past pneumatic drills, leaf blowers and stone cutters. I never used to do these things.

Why now? These things are no louder now than they used to be. The traffic is perhaps a little busier now than it used to be, the base level noise seems to be much the same.

And I still enjoy music.

But my world is so much more visually jarring these days. When I was younger, I didn’t spend so much time looking at screens. We as a society didn’t spend so much time looking at screens.

My childhood, teens, and early 20s were not swamped by promotional videos on flatscreens, mouse-over animations on websites, flickering, flashing LED displays, autoplay videos and GIFs on social media. I was not endlessly distracted by TV screens in pubs, shops and restaurants. The teaching I experienced at university did not rely so heavily on video and bright, online content. Even TV imagery was less “busy”.

So many bits of visual information now vie for attention. My brain takes in all of it, and I struggle to know where to look, or how possibly to avert my eyes from it all.

Hell, even my doctor’s surgery and the buses I travel on now display moving adverts on bright LCD screens. I can’t escape.

And everything’s so bright.

The constant bombardment of moving, flickering, flashing images and lights overloads my brain.

I can’t constantly block out noise with earbuds, earplugs or noise-cancelling headphones. I’m often with people, and required to listen to them. Often, these people are my own children.

But I can’t focus on trying to filter out unwanted noise and on listening to people if so much visual information is competing for my attention. It needs toning down. If I can’t block out noise, I have to find ways to lessen the assault on my other senses. I must close down a few other mental applications to leave enough working memory to deal with what is in front of me.

So I wear sunglasses. My world is calmer, darker, and the contrast is turned down. And this leaves my brain just that tiny little bit more processing power to cope with the noise.


[Featured image description: monochrome, heavily filtered black-and white photograph of a white person with medium length hair and a large coat, wearing large vintage-effect sunglasses. A leafless tree is visible in the background on the right of the image. Effects have been applied to the extent that very little of the person’s facial features are distinguishable.]

Things I have learnt in 2016

I’ve never been the kind of person to go on for the endofyearroundupsocialmediastatusupdate thing. But this year has been different, and besides, I’m blogging now.

Just over five months ago, I received my formal autism diagnosis. But it feels as if this whole year has been about autism – my own, and that of my daughter. For the seven months prior to my assessment, my eyes were gradually being opened. 

So here are just a few things I’ve learnt (by no means exhaustive) in this turbulent, traumatic year.

So yeah, I’m autistic.

I learned this for myself in the early part of this year, and had my conclusions officially confirmed in July. Celebrity deaths, mass genocide, the rise of fascism, Brexit, and Trump aside, that’s kind of what this year’s been about for me. It’s a pretty big thing, after all those years of bewilderment. I felt it important enough to write about, anyway.

I can write.

I mean, yes; I always knew I could write a bit. But this year, my investigations into autism, my diagnosis, and the resulting self-reflection, have given me oh so much fuel to get my words out into the world. I like to think I’m pretty good at it, and it feels like I’m getting even better.

There’s no harm in a little judicious (or even brutal) editing at times.

Brevity is not one of my strong points – either in speech or the written word. But I’m working on it. And I’m learning. And improving.

Writing can be used to make real change.

Of course I know this on one level; I’m an English graduate. I’ve read an awful lot over the years.

But over recent months I’ve had people contacting me directly as a result of my blog – asking for advice, telling me how much my words have meant to them, how much better they now understand their partner/spouse/child/friend, how much they recognise themselves in someone else’s story and how validating this feels to them. People have told me that my words have made them think.

And, of course, I owe a debt of gratitude to all the bloggers whose words I read when I was investigating autism for the first time. Had I not seen those personal accounts, I never would have seen myself through a new lens. And I never would have had the chance to really understand who I truly am.

The more the voices of autistic people are shared, heard, and amplified, the more there is a chance for real positive change to happen. Writing isn’t the only way this can, or should, happen, but it’s still important.

I don’t have to lament the loss of past opportunities to be creative.

Okay, so I gave up fine art after GCSEs, despite it being a lifelong passion from the age of about three onwards. I’ve always had a fear of committing my musical ideas to a recorded form, resulting in a lifetime of forgotten songs and song fragments swimming in my head until, eventually, they get squeezed out by everything else my brain is trying to deal with.

No matter. No point in regrets. I feel compelled to write, these days. Who knows where this will take me?

Being open about my autism is the right thing to do.

For one thing, it’s helped hugely at work so far (I know not everyone shares my positive experience here). I’m continually surprised by how much my general stress levels have reduced now I have the weight of diagnosis off my mind, and now that I’m able to explain my situation, and my needs, somewhat better to my colleagues.

Not everyone will feel the same as I do about being “out”, and that’s fine. Not everyone’s circumstances make this feasible, or desirable. I’m very, very lucky. But for me, it feels imperative that I’m out there, visible, challenging people’s notions of what it means to be autistic. I hope that by doing so, I might be able to help others like me.

I have some absolutely bloody wonderful family, friends, colleagues, co-workers and acquaintances.

Here, again, I’m lucky. I never posted the great big, coming out, “hey everyone, I’m autistic!” status update on Facebook or elsewhere. But a lot of people know about my diagnosis. It’s not something I ever intend to keep secret. And so far, although it’s early days (big caveat, there – there may be the odd dark day to come in future. Who knows?), I’m not aware of many folks that have mentally or physically excommunicated or disowned me. I think it helps that many of my friends, colleagues, and family are equally as weird as I am, albeit not all of them autistically weird.

And on that note:

Weirdness is normal.

Weird people might not make up the majority of humanity. But there are loads of us. And that’s rather interesting and wonderful. And some aspects of my weirdness are beautifully, elegantly, wonderfully explained by my being autistic. Other elements of who I am are weird for other reasons, and that’s also cool.

Autistic people feel empathy.

That would appear to be a weird thing for an autistic person to write, right?

The reason this was news to me was because I’d spent years reading the odd clinical account of autism, seeing the odd mainstream media representation here or there, without ever recognising myself in the depictions. So often, I’d read the words “lack of empathy”. I couldn’t possibly be autistic…could I?

I’m abysmal at reading people right in front of me, in the here and now, but with a little distance, my empathy goes into override. And this year I’ve learnt that, amongst autistic people, I’m far from alone in this respect.

Understanding my own autism helps me to be a better human.

I’m not saying that being autistic makes me a better human. No single group of people can claim superiority in that respect – there are arseholes all over the place, of every neurotype. But in the time I’ve been writing my blog, interacting with other bloggers, communicating with folks on twitter and elsewhere, and since being formally diagnosed as “different”, I’ve developed a deeper understanding of what it means to be different, and how the many types of difference intersect and affect people’s experiences, life choices and opportunities (or lack thereof).

Again, I’m still learning.

There’s a whole wonderful community of autistic people out there.

And despite the fact I only know the majority of these beautiful individuals online, I now consider many of them to be true friends.

I feel a duty to help others like me.

I can’t stand by and let other undiagnosed autistic people – especially girls and women – fall through the cracks. I have limited capacity to help, it’s true; I have a full time job, a young family, and precious little downtime to keep myself healthy and happy. Nevertheless, I feel it to be something of a duty for me to educate, explain, and support in whatever small ways I can.

The world is a somewhat terrifying place right now.

But I still believe in seeing the best in people, and in tackling prejudice, hate, violence and abuse through dialogue, understanding and compassion. It won’t achieve everything, I know, but for me, personally, it’s much healthier to behave in this way.

And whilst I’m at it:

I need to take better care of myself.

I am getting better at saying “no”. I’m learning to let go of the guilt I feel at not responding quickly enough to messages, sacking off a social occasion, and general not doing as much as I used to, because I recognise the need to recharge and to protect myself. Now I have a confirmed reason for why I often feel this way, it’s much easier. Being kind to myself, first, leaves me in a better position to be kind to others.

Again, I’m still learning.

I’m not broken.

Certain aspects of my autism can at times be disabling. And the process of assessment and diagnosis led me into a tough period of questioning, self-scrutiny, and self-doubt. But I have many, many strengths. I’m realising this more and more as time goes on.

And my way of thinking, of feeling, of being, is every bit as valid as anybody else’s.

Validation

My husband doesn’t share my enthusiasm for social media. That’s fine; there are many people who see it all as vain, vacuous, narcissistic, soul-sapping nonsense. And certainly, there is much of it that is. But my husband’s chief objection to it is that he can’t fathom people’s need for constant validation.

People have always needed validation. Many children in school playgrounds like to feel popular. Or, if not popular, then at least not a complete and utter social pariah. Some, like my childhood self, will make notes of overheard conversations and, at a future date, drop certain topics, words or phrases into interactions with peers, or will try and buy into certain trends – toys, clothes, whatever – all in an attempt to appear engaged with what it is ‘normal’ to be engaged with, whilst nevertheless being somewhat bemused by it all. The selfie culture is about seeking approval. And, yes, so is an awful lot of text-based social media interaction.

But for anyone in any kind of minority (or disadvantaged) group, it goes beyond that. If you’re not autistic, poor, LGBT+, disabled, BME, or, hell, female (and I realise I’m not being exhaustive in my list of underprivileged groups here), just try to imagine for a short while what it must be like to be surrounded by others who appear not to experience the world in the same way as you. Wouldn’t it be great to come across others who see things similarly? To discover something about yourself through learning about the experiences of others like you?  To feel a little less…alien? And, perhaps, to love yourself just that little bit more as a result?

Validation comes in many forms. Music gigs. Group therapy sessions. A political rally. Communities of Practice (the team I work in runs a lot of continuing professional development and networking activities for lecturing/teaching staff, and shared experience is such an important aspect of discussion – it’s also one reason for writing up case studies). Underground activists’ meetings.

Persecuted groups have, throughout history, met, often secretly, and whilst some of these meetings might have been focused on organising, planning, struggling, I’m sure shared experience would have been an essential part of it all.

Community. Sharing. Validation.

Researching the scholarly literature is one (arguably often infuriating) way of finding out about autism, as is reading factual web information from trusted organisations. But this isn’t really enough. Especially if you’re autistic and female. We’re far less visible. And that’s one big reason why so many of us aren’t formally diagnosed. We don’t conform to the expected model.

As soon as you start reading blog posts by other autistic women, watching videos on YouTube, participating in extended Twitter exchanges, and joining in with discussions in closed Facebook groups set up just for people like you, you start to realise you’re not the horrible freak you always thought you were. There are lots and lots of lovely people out there whose lived experience of the world is just that little bit closer to yours. Many of those thoughts, feelings and behaviours you’ve spent a lifetime trying to curb because they weren’t ‘normal’ are actually a perfectly valid and acceptable part of who you are. You’re not alone. And you’re pretty bloody awesome just the way you are. Think how much you’ve already overcome.

I recently shared a Vox article on aphantasia on Facebook with a couple of friends who have this particular neurodivergence, and one was so pleased to see her experience of the world explained so clearly. She’d always assumed everyone saw the world in this way, and had been stunned to discover this wasn’t the case. She told me, quite categorically, that it was great to feel validated.

When many people write ‘honest’ parenting blogs (another of my husband’s pet hates), their primary motivation is not usually one of vanity – it’s to provided an authentic #actuallyaparent voice amongst all the conflicting professional advice many parents (sadly more often mums) are bombarded and beaten down with from pre-conception onwards. Many parents are grateful to read that their own experience is real, valid, and shared.

In writing a blog, I want other people to read it. If my experiences resonate with someone else, there’s the potential that they could help them (perhaps I’m being arrogant here…). I know that reading others’ words, and interacting with others online, has helped me vastly.

For autistic people, the Web can be overwhelming. There’s a shitload of information out there, folks.

But it provides a means to commune, and share, in a way that was never possible before. The more autistic women and girls are able to see themselves through others, the more likely it is that they can get a diagnosis and support (if needed or available), and the more likely it is that they won’t spend quite as much of their lives suffering mental illness, identity crises, career-threatening misunderstandings at work, underachievement, and so on.

Even just being able to love yourself a little more is worth a hell of a lot.

And in I jump…

Well, hello there. My name’s Anna, and I’ve been grappling for quite some time with the decision over whether to start a blog or not. I love writing, and am pretty darned wordy, being a graduate of both English Lang/Lit and Information Management an’ all. You could say that language is one of my special interests.

But I’ve been wrestling with issues of authenticity and legitimacy. I have suffered a lifetime of ‘impostor syndrome’ – never quite knowing why I’ve felt like I’m always pretending to be something I’m not. I’ve done this academically, professionally, and socially. All. My. Life. Only now, I feel a bit of an impostor wanting to write about autism when as yet, I’m not formally diagnosed with it. I mean, I wrote an extensive essay matching up my traits with the DSM-V criteria to give to my GP in support of a referral, but I kind of like being ‘bona fide’.

But recently it all got a little bit too much.

It was the bloody referendum that did it. Now, UK politics is not a subject I intend delving into much on here. It saps too much of my energy to even consider it, and whilst I like being reasonably informed, the political structure of my country is not a subject I enjoy spending hours delving into, poring over articles, columns, blogs, academic papers, and so on. Unlike, say, feminism, or words and language. Or (my most recent obsession), neurology.

Because of the EU referendum, however, I’ve been unable to escape it. And only last weekend, the whole damned shebang left me so upset that I couldn’t stop crying. And then I realised, that the referendum result was merely a manifestation of a deeper feeling of complete, erm, overwhelmed-ness. Being the sole breadwinner for my family, with a beautiful, intelligent, brilliant four-year-old daughter struggling to negotiate the world as a (probably) autistic child;  a very mobile almost-ten-month-old-boy getting everywhere and keeping me up at night; the financial worries of supporting a family of four on one income; a job I love that nevertheless exhausts me mentally and emotionally at times (and recently one which as had me surrounded by earsplitting, nerve-jangling construction noise); no bloody down-time. My poor, exhausted brain could no longer cope. Last weekend I burnt myself out. I saw my GP, got signed off work for a fortnight, and am now doing by best to rest. But my mind is not still.

For a long time, I’ve used Facebook as an outlet to express my feelings, and also to call for peace, love and understanding amongst my online friends. Many people tell me they enjoy reading my status updates and shares or worthy pictures, articles and stories. But the vitriol on both sides of the EU referendum debate, particularly that which I see on Facebook, has left me feeling downhearted and depressed, and I can’t take any more of it.

But I still need my outlet.

And now I feel ready to write about my autistic experiences; however legitimate – or not – I feel about them. I can’t ignore the overload any longer. I need to get it out there. Who knows, perhaps this might help me sleep better at night?

And so I jump in.

Who knows, with time, this blog might become a source of information, insight, even comfort to others. I hope one day to advocate openly for myself, my daughter and other autistic people. But right now, I’m just getting stuff down.

We’ll see where this takes me…