#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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Connecting

We’re nearly at the mid-point in January 2018, and I’m only just now writing my first post of the year. I didn’t even do an end-of-year retrospective to see out 2017.

Initially, I was reluctant to do so because the final few months felt so negative. My anxiety and stress levels during Autumn and early Winter of 2017, brought on by matters entirely outside of my control that are still yet to be resolved, had put an unpleasant slant on the entire year. Besides, a lot of people I know had a rough time that year. 2017 wasn’t something I wanted to celebrate.

And then curiosity got the better of me, and I watched the video Facebook had “made” for me to summarise my year. And what did it feature? My beautiful, happy children. Plus a handful of very positive posts about things I’d done to increase autism understanding and acceptance over the course of the year. My Times Higher Education article.  Professionally, I kicked ass.  In other ways, I merely got by, but that in itself was something to celebrate.

Of course, we often self-police our own social media profiles, personae and presence, airbrushing, sugar-coating and self-censoring to project the image we want the world to see. But still, I reflected back, and realised that, on a personal level, a lot of good stuff happened to me in 2017.

I still didn’t have time to do my big retrospective, and anyway, I’m often scornful of such things. They seem so contrived, and the point at which our calendar flips over is so arbitrarily set. But one of the biggest highlights for me about last year, and something I want to truly build upon and expand in this, was connecting.

Connecting with other people like me.

I spend so much of my time trying to “spot the autistic”. And I often forget that most people I’m surrounded by are not autistic. I still often assume, because it is my reality, that everyone experiences the world the way I do. It’s only recently that I realised just how different my reality is from that of the majority, and I’m still coming to terms with this. Maybe I never will come to terms with it entirely.

I never really forget that I’m autistic – why would I want to? It’s who I am – but in those moments when I’m jolted from a reverie and suddenly remember how much of a minority we are, I feel momentarily crestfallen. How can it be that there are so few people like me? How can I have spent so much of my life alone?

Not literally alone. The “atypical” autistic socialises, networks, interacts. She has close friends and family. She has social circles. She gets things wrong a lot, intellectualises every interaction, and internally she may struggle profoundly, but still she has many connections, and many of them are meaningful.

And it isn’t that I don’t still love my non-autistic friends and family. There is more than one way to find connections with others; more than one thing I can potentially have in common with another individual or group.

There is a lot of love in my world.

But we still need to connect with people who see the world as we do. I need this, at least.

From way before my formal identification (I’m moving away from “diagnosis” as a preferred term, folks), I was connecting with other autistics online. This was valuable. Insightful. And hugely helpful.

In 2017, I began to connect physically with other autistic people.

Not all autistics like actual physical contact – I mean, in this case, touch. I’m one of those who sometimes does in some circumstances at least, but I’m selective, and also responsive. With autists far more than the rest of the population, I can usually gauge pretty quickly whether a hug is going to work or not. Sometimes, the urge to hug is instantaneous, generous, and entirely mutual. And this is a wonderful thing. That deep pressure, that warmth. It’s beautiful.

But it isn’t necessary for meaningful connection.

The best thing about physically being around other autistics, is feeling able to be myself. Feeling able to be…autistic.

Imagine a world in which you are almost never allowed to sit, stand or move in a way that is natural to you. A world in which you are forever monitoring, checking, analysing and editing your behaviour in real-time. Forever conscious that the way you naturally want to behave – need to behave – in order to feel comfortable and well in your own mind and body, may not be acceptable to others, and thus may need modifying.

And this is all on top of potential difficulties with the processing of verbal and non-verbal language, and the need to cope with potential environmental distractions, information overload, or sensory overwhelm. It’s exhausting. This is the world of the “mildly” autistic.

When I’m with other autistic people, it isn’t like that. We understand each other, we accept each other, and we accommodate each other. I revel in being able to move, speak, and emote like an autistic person, and in seeing others do likewise, unchecked.

In the past year, I’ve met autistic people. In “real life”. I’ve met up with individuals. I went to a local PARC event in November 2017. And with another late-diagnosed female Aspie colleague, I’m in the process of setting up an informal peer support group for autistic staff at work – we’re currently a very small, select group and have met just once so far, but in time I hope this will grow.

In the meantime, the two of us who are organising the group also meet separately. We have coffee, or lunch, and we talk as friends.

It isn’t just autistic people, of course. There are other people with whom I can be myself, and these are predominantly other disabled people, and other people whose brains are wired somewhat differently from the default. My network of disabled and neurodivergent friends is growing, and whilst our challenges may vary, there is a mutual appreciation of the difficulties we each face, and recognition of each other’s intrinsic worth as people.

Somebody I know who is bipolar, and with whom I delivered a well-received conference workshop on neurodiversity back in September 2017, is one of very few people I’m comfortable having lengthy telephone conversations with.  We’re very different in the way we each see the world, but he accepts my weirdnesses, and I accept his. We celebrate these things. We check in with each other and support each other.

Alongside that gorgeous, proprioceptive loveliness, firm physical hugs release oxytocin. The “love hormone”. The deep pressure of physical contact, and this surge of love, is what made me love carrying my babies in slings, and makes me dread the time when my younger child is too big to sleep cuddled up on my chest.

But the surge of love and emotional well-being can come from many forms of connection.

Here’s to much more of it in 2018.


[Featured image: two people hugging, with one person facing towards the viewer. This person is light skinned with red hair and a purple top – their arms are around the shoulders of the person turned away from view, who is blonde haired, wearing a green top. The two people are surrounded by rainbow colours, radiating outwards.]

It is what it is.

It is what it is.

I find myself having to say this so often.

It’s supposed to be a mantra of mindfulness. Of accepting what is, because that’s all there is. Right here, right now.

At the moment I find myself regretting so much, despite how often I try to convince myself that regrets are pointless.

I regret that my busy home and work life mean I have so far met very few other autistic people “in the flesh”. It’s true, I do need physical connections with people. I might be autistic, and an introvert, but I’m still, ultimately, a people person. But I’d like to meet more people like me, now I really know what and who I am.

But it is what it is. There’s very little I can do to change my circumstances right here, right now.

I regret that I didn’t have this knowledge, about what and who I am, earlier in life. What would I have achieved? How would I have felt? Would I have done more? Found things easier?

…Or not?

It is what it is. The way space-time has worked out for me, it could never have been any other way.

I feel anxious about so many uncertainties going on right now. At work, at home, in my country, and in the wider world.

And I regret sometimes that I can’t do more to make things better, for myself or others.

But it is what it is. I am only one human, and one who spreads herself far too thinly as it is.

The thing is, I’m not actually unhappy at the moment. On balance, there so much that’s good. I’m far more comfortable with myself, at ease and at home with myself, and able to love myself, than at any other point in my life. So much is great for me professionally, personally, and privately.

But I’ve had a taste. I see some of the things my neurosiblings do, I see the way they connect with each other, and I wish I could have more of that.

But, as I’ve done before, I’m making unrealistic and unreasonable comparisons with others. It’s a trap I keep falling into. When will I learn that the grass in my garden is green enough?

Things will change. They always do. I’ve already been able to make change happen, and so much of this has been because I’m autistic, but now I know that I’m autistic. Things I would never once have believed possible have happened. And now I believe even more is possible, and more tangibly possible, than ever before.

I don’t have to rush to do it all right here, right now.

But I can make the most of what is right here, right now.

Rhubarb in the back garden. Blossom on the trees. New beech leaves. Rooks strutting through the local park. Dewy grass in the morning. My enjoyment of my job. My family and friends. My husband’s strong shoulders and daft puns. My daughter’s elaborate stories, pictures, and imaginary worlds. The soft curls of my little boy’s hair, and his mischievous grin.

It is what it is. My life is what it is. It’s a good life, and there’s so much more to come.

Spot the Autistic

Does anybody else ever find themselves playing this game?

I’m always on the lookout.

My daughter loves going to our local museum. For a while we went every weekend: always the same routine of bus–café–museum–park–ice cream (summer only)–bus. Now that my girl is at school, our weekends are more varied. There’s often a birthday party to attend. Sometimes a visit from relatives. And sometimes, I’m just too damned exhausted to take the kids anywhere, and we stay at home doing crafts, reading books, or playing make-believe.

Even so, our ritual visits, and their accompanying set sequence of activities, are still fairly frequently observed.

My daughter’s favourite exhibit is an interactive game where you can use a touchscreen to select body components, traits and features to ‘design a creature’, and then see how well it fares in a particular habitat. And it’s here we often meet children like her, and like me.

As my girl makes up her monster, I have in-depth conversations with primary-age kids about their favourite amphibian. I listen to their enthusiastic explanations of why, for them, cartilaginous fish are superior to mammals, reptiles, birds or insects, or why a certain invertebrate has the best defence mechanism. Sometimes, they attempt to guide my daughter in her creature design choices, giddily and excitedly gesticulating (she always has her own views and ignores what others suggest). I always enjoy these times. As much as I am a mum, I also feel free to be me.

It’s easier to spot the kids. Particularly the boys (they’re not hiding so much).

Adults, less so.

It’s comforting to discover others like you, but the truth is that – offline – I rarely do. Not many who are diagnosed, that is. And yet I often find myself wondering.

Friends’ Facebook posts about overpowering reactions to smells or sounds. The mention of fear of eye contact; dread of small talk. Cute obsessions, lovingly captured via Instagram. Info-dumps. Lists. Oh so many lists.

And whilst I’m skeptical about ‘armchair diagnosis’, I can’t help but do it from time to time when I watch the news, a documentary, a gameshow, or a celebrity interview.

And certainly, I’ve come across people in my work who I’m sure are autistic. Not in my immediate team, but close by. There might something about their movements or mannerisms; awkwardness one moment, fluidity the next. Hardly surprising – academia can be a refuge for many who think differently; who explore and investigate more intensely; who approach things from a different angle; who see what others can’t see.

At times, I wish we had signals. Perhaps not a special handshake (good God, I hate shaking hands), but something. It would be nice to have that subtle yet satisfying mutual recognition of other members of your tribe.

But always, when I think I’ve come across one of my ‘people’, I let my guard down a little. I’m a little freer in my movements, I’ll indulge the other person’s apparent idiosyncrasies without question, and I’ll perhaps be a little more open with my own. You never know.

Maybe they have a diagnosis, but don’t want to disclose. Maybe they don’t even realise.

I’ve grown so used to ‘mirroring’ my neurotypical peers, despite the cognitive, physical and emotional cost of doing so. So when I come across someone who seems a little different, but perhaps a little like me, it can be a relief to just go with the flow, and respond to what seems a far more truthful mirror in front of me.

So many of us are hidden. We hide deliberately, or we unwittingly hide from ourselves. And I wonder, just wonder, what it would be like if the world were more knowledgeable, and more accepting.

Would I still need to be on the lookout?

Or would Spot the Autistic be a far easier game to play?


[Featured image credit: ‘Lookout‘ by Duncan Rawlinson. Featured image shows a coin-operated binocular viewing machine, pointed outwards over some rails towards an area of trees and water. The sky is blue with minimal cloud.]

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.