#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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#AutismAcceptance/#AutismAppreciation Doodles ‘n’ Scribbles, no. 14: Being an Autistic Parent (PART 2)

A comic strip of three panels, laid out in portrait orientation, and drawn digitally in black and white. PANEL 1: IMAGE: Silhouette of a mother and two children (the elder one long hired wearing a floaty dress; the younger one with short hair, t-shirt and tracksuit bottoms). All are barefoot, and jumping/dancing. They are surrounded by musical notes, stars and flowers. TEXT: “But there’s so much joy we share.” PANEL 2: IMAGE: Composition of a child’s drawing featuring two people and the crudely written words “I love you”, a child’s hand holding a heart-shaped object, another child’s hand holding a flower, and an iPad screen containing various emoji and the words “My Mum is the best!” TEXT: “I know they love me, from all the little ways they show me.” PANEL 3: IMAGE: Mama Pineapple, a white female-presenting person with mid-length hair, hugging two small children, whose faces are turned away from the viewer. TEXT: “And the love I have for them is the biggest, scariest, most beautiful feeling I’ve ever had.”

A continuation of yesterday’s little comic strip. One day I might expand this into a longer piece about autistic parenting, but I don’t have the spare time or executive function to commit to producing a regular web comic at the moment…


Text description:

A comic strip of three panels, laid out in portrait orientation, and drawn digitally in black and white.

PANEL 1:
IMAGE: Silhouette of a mother and two children (the elder one long hired wearing a floaty dress; the younger one with short hair, t-shirt and tracksuit bottoms). All are barefoot, and jumping/dancing. They are surrounded by musical notes, stars and flowers.
TEXT: “But there’s so much joy we share.”

PANEL 2:
IMAGE: Composition of a child’s drawing featuring two people and the crudely written words “I love you”, a child’s hand holding a heart-shaped object, another child’s hand holding a flower, and an iPad screen containing various emoji and the words “My Mum is the best!”
TEXT: “I know they love me, from all the little ways they show me.”

PANEL 3:
IMAGE: Mama Pineapple, a white female-presenting person with mid-length hair, hugging two small children, whose faces are turned away from the viewer. Small love hearts radiate outwards from the group.
TEXT: “And the love I have for them is the biggest, scariest, most beautiful feeling I’ve ever had.

#AutismAcceptance/#AutismAppreciation Doodles ‘n’ Scribbles, no. 13: Being an Autistic Parent (PART 1)

A comic strip of four panels, laid out in portrait orientation, and drawn digitally in black and white. PANEL 1: IMAGE: A headshot of Mama Pineapple, a white female-presenting person with mid-length hair, sweating, shaking, and looking exasperated, with a tear running down her left cheek. TEXT: “Being an autistic parent can be really hard sometimes.” PANEL 2: IMAGE: Mama Pineapple with her hands over her ears, surrounded and overwhelmed by a whole range of loud noises including children’s voices, loud sudden sound effects, and the Danger Mouse TV series theme. TEXT: “The noise can be overwhelming...” PANEL 3: IMAGE: A messy floor covered in Duplo bricks, soft toys, books, drawings and half eaten biscuits. A child’s foot is just disappearing out of view to the right of the panel. A teddy bear is being flung into the scene. The bottom of a switched on TV screen is just in shot at the top right hand corner. TEXT: “...as can the visuals.” PANEL 4: IMAGE: Mama Pineapple looking unsure/worried, flicking the fingers of her right hand by the side of her face. TEXT: “Am I grown-up enough? I struggle to keep myself organised, let alone my small children.”

First attempt at a (sort of) comic. Part 2 (which takes a happier, more positive slant!) coming up tomorrow.


Text description:

A comic strip of four panels, laid out in portrait orientation, and drawn digitally in black and white.

PANEL 1:
IMAGE: A headshot of Mama Pineapple, a white female-presenting person with mid-length hair, sweating, shaking, and looking exasperated, with a tear running down her left cheek.
TEXT: “Being an autistic parent can be really hard sometimes.”

PANEL 2:
IMAGE: Mama Pineapple with her hands over her ears, surrounded and overwhelmed by a whole range of loud noises including children’s voices, loud sudden sound effects, and the Danger Mouse TV series theme.
TEXT: “The noise can be overwhelming…”

PANEL 3:
IMAGE: A messy floor covered in Duplo bricks, soft toys, books, drawings and half eaten biscuits. A child’s foot is just disappearing out of view to the right of the panel. A teddy bear is being flung into the scene. The bottom of a switched on TV screen is just in shot at the top right hand corner.
TEXT: “…as can the visuals.”

PANEL 4:
IMAGE: Mama Pineapple looking unsure/worried, flicking the fingers of her right hand by the side of her face.
TEXT: “Am I enough of a grown-up? I struggle to keep myself organised, let alone my small children.”

#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles no. 9: why didn’t anyone tell me Girl Guides sweatshirts and white socks were uncool?

An 11-year-old Mama Pineapple: a white girl with chin-length bobbed brown hair, wearing a blue sweatshirt with white Girl Guides logo, floral skirt, white socks and black lace-up shoes. She has her hands behind her back and smiles.

As a kid, I observed what others wore, and mostly aped what I thought was deemed “cool”.

But there’s no instruction manual for operating in pre-teen or teenage polite society, and nobody ever tells you what isn’t cool. Sometimes in my later primary school and early secondary school years, I just liked wearing my Girl Guides sweatshirt – outside of Girl Guides meetings. It was a nice shade of blue, and it was comfortable.

And the white socks. How was I supposed to know these were unacceptable clothing items? I didn’t realise until years later what some other kids had really thought of me for such apparently ill-judged sartorial decisions.


[Image: An 11-year-old Mama Pineapple: a white girl with chin-length bobbed brown hair, wearing a blue sweatshirt with white Girl Guides logo, floral skirt, white socks and black lace-up shoes. She has her hands behind her back and smiles.]

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.]