#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. 18: Robots

Portrait orientation fineliner pen drawing of 28 brightly coloured robots of various sizes, shapes and types, with a range of facial expressions and poses. This is not a ‘scene’ but a series of individual images - the only background is the page on which they have been drawn.

You’d think, wouldn’t you, by now, that the stereotype of autistic people as emotionless, empathy-devoid, monotonous-voiced beings with no inner life might have been chucked out of the window forever. But it still seems to persist, even as we work to change the narrative.

I am fully human. My brain is simply a different machine from that of a neurotypical person.

I do quite like robots, though.


[Image description: Portrait orientation fineliner pen drawing of 28 brightly coloured robots of various sizes, shapes and types, with a range of facial expressions and poses. This is not a ‘scene’ but a series of individual images – the only background is the page on which they have been drawn.]

#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles, no. 11: Monsters

Landscape orientation fineliner pen drawing of 15 brightly coloured monsters of various sizes, shapes, body coverings and with a range of facial expressions.

Autistic people really aren’t monsters, you know. We’re humans. But we come in many shades, shapes, sizes and forms.


Image description: Landscape orientation fineliner pen drawing of 15 brightly coloured monsters of various sizes, shapes, body coverings and with a range of facial expressions. This picture is a series of individual characters side-by side in three rows of five, rather than a ‘scene’. There is no background other than the page on which the characters are drawn.]

Seeing ourselves

[Author’s note, 27 September 2017: since writing this post, I’ve come to the conclusion I’m not quite as cis-het as I always assumed I was. But my because my gender identity and sexual/relationship orientations aren’t very easily definable, I don’t really TRY to define them. And the rest of this post still stands – I experience no gender dysphoria, in person I’m generally read as cis-het, and can’t be bothered with the hassle of quibbling about it. I have enough challenges having decided to be so out and proud about being autistic in my late 30s without further complicating matters.]

I’ve recenty embarked on a professional development programme at work, which my (UK) University runs as part of the US-based National SEED (Seeking Educational Equity and Diversity) Project on the Inclusive Curriculum, first developed 30 years ago.

I’m excited and also somewhat apprehensive about participating in this programme, and what it will entail. Certainly it’ll involve a lot of challenging of perceptions, self-scrutiny, and, I’m sure, a hell of a lot of learning. Along with the other participants, I’ll be exploring my own individual diversities and how they intersect, as well as thinking about those of the people around me, the people I work with, my students, and so on. I’m hoping that it’ll be both of use to me as a private individual, and also another valuable source of learning that I can put towards being a better teacher.

A single story

At our first SEED workshop this week just gone, we were shown the video of a TED talk by the novellist Chimamanda Ngozi Adichie, on The Danger of a Single Story 

Those belonging to any marginalised class of people sitting outwith the dominant, power-holding group in sociey often find descriptions and depictions of themselves – as a class or group of people – to be reduced to one narrow, restricted narrative. That one single story is all that anyone ever sees, hears, or reads of that group.

If they even see, hear, or read any story at all.

Adichie gives many examples throughout her speech: writing stories as a little girl about British children drinking ginger beer, playing in the snow and talking about the weather, reflecting the stories she’d read as a child; her perception of her family’s houseboy as poor, but nothing beyond that; much later, of being told that a novel of hers was not an accurate representation of African life.

That last example: I’ve read accounts of similar experiences of autistic authors – their account of autism, directly informed by personal experience, is not seen as “authentic” because it doesn’t square with the dominant narrative – that single story that most people have seen, heard or read about autism and autistic people.

It can’t be true, because it’s not what we’ve come to expect.

There are lots of people out there who feel prejudice, contempt, disgust, or hatred towards disabled people. (And this is leaving aside the more casual, everyday “benevolent” ableism. Thank you for inspiring me! Well done for doing normal stuff despite being so horribly afflicted! How brave you are!). Many people do not see disabled people as people. And there seems to be a special type of stigma reserved for autistic people, and I believe it’s the single (false) story about “lack of empathy” that’s at the heart of this. If a person does not feel empathy, how can they engage with the human experiences of others? How can they truly be human?

Nowadays, as a self-aware autistic person who just so happens to experience hyper-empathy, this notion hits me, and hurts me, to the very core of my being. It’s one reason for my choosing to use identity-first language. To take ownership of the label for which so many people feel such contempt, fear and disgust. Because we’re all people by default. It’s a given.

I wrote in my last post of 2016 about how, despite being autistic, I’ve only come to this realisation that autistic people feel empathy in the past year.  And this is all because I’d been influenced by what I knew of autism, based on what I saw of autism in the media. My layperson’s limited knowledge. A single story.

Male. Middle class. Poor personal hygiene. Robotic. Difficult. Extremely fussy. Haters of everyone around them. No inner life. Either an uncommunicative, nonverbal headphone-wearing boy who alternates between scowling into the middle distance and lashing violently out at others, or a socially-inept, bowtie-wearing, humming middle-aged übernerd. The bane and burden of their exhausted, careworn parents’ lives. Robbers of their families’ energy, love, goodwill, and freedom. Tragedies. Impossible to live with, but incapable of looking after themselves. Their personhood lost to the scourge that is the disease of autism. I will hold my hands up and admit that I used to be horrified at the idea of autism, because I didn’t understand it.

I most certainly didn’t see myself.

When it was suggested to my husband and me that we should look into the possibility of having our daughter assessed for Autism Spectrum Disorder, I was alarmed. Once the idea had been planted in my mind, I even questioned whether my (highly intelligent, imaginative, creative, compassionate, kind, sociable, hugely funny) daughter had any inner life at all, because so much of her early speech was echolalia. If she couldn’t express herself in her own words, was there anything in there?

(Yes. I know. Please understand I don’t think this now).

It’s horrifying to think that the prevailing image of autism is so negative that even people like me – autistic people like me – don’t recognise it until we start delving more deeply and reading more widely. Over the course of doing research, reading blogs, and lurking on Twitter, I came to the realisation that there were people like me out there. And they were all autistic people.  It was only after reading these “unofficial” accounts – these other stories – that I saw myself.

I saw myself as autistic.

Still not the full story.

And – lo and behold! – both my daughter and I are now formally-diagnosed. And I’m so much happier because of this.

And, more recently, I have seen more people like myself in the media. Over recent months, I’ve seen a small flurry of articles in the press about the experiences of late-diagnosed autistic adults. Often, the focus is on the “phenomenon” of the late-discovering autistic mother, who only seeks a diagnosis after experiencing a series of lightbulb moments whilst researching her autistic child’s “condition”.

We’re a curious bunch, us adult-diagnosed autistics. On the one hand, many of us experience – until the point of diagnosis – a lifetime of apparent good fortune because we are not stigmatised by the “label” of being autistic. On the other, there are many ways we’ve been disadvantaged, let down, misunderstood, traumatised, and neglected by that very lack of a formal explanation for why we are the way we are. And we may not be judged for being autistic, but we are judged nevertheless because we make such a bad job of being neurotypical.

But then, there’s another thing. There’s the issue of privilege.

There are so many autistic people who are not visible; who are not portrayed or represented; whose stories are not told.

I’m doubly-disadvantaged in a patriarchal, neurotypical-dominant society by being both female and autistic. But one thing has struck me about so many of those recent articles. Almost all of the people portrayed are white, middle-class, cisgender, and (as far as I can gather from the narratives) heterosexual.

Male or female, they’re an awful lot like me.

My being female made me among those less likely to be diagnosed at all. And yet, the fact I have a diagnosis is due, in no small measures, to privilege. My mother’s educational background and professional qualifications enabled her to “spot” my daughter’s autism. I myself have had a decent education. I have ready access to the internet. I grew up in a financially-constrained but nevertheless stable, supportive middle class home. I’m white. I had resources, skills, and expertise at my disposal that enabled me to conduct thorough research and prepare a “case” for being referred for assessment. I was so thoroughly prepared it would have been hard to argue with me, but then, I’ve had a lot of professional experience at gathering evidence and mapping it against criteria – professional experience I wouldn’t have gained had I not been highly educated.

And doing research into something like autism – especially research of the informal kind, such as reading blogs – is a damned sight easier if you can readily find the stories of people who are like you. And, like it or not, I may be part of an underrepresented group of formally-diagnosed autistic people, but there are still more people like me – white, cisgender, heterosexual, often mothers – receiving a diagnosis than those autistics who are further marginalised. And we are therefore that teensy-weensy little bit (understatement alert!) more visible.

If we don’t see ourselves represented in any way, if the existence of people like ourselves is not acknowledged, then how can we truly understand our place, or our space, in society? And if we don’t see this, how the hell can other people see it?

There are white autistic people. There are autistic people of colour. There are male autistics, and female autistics. There are cisgender autistics, and there are oh-so-many autistic people whose gender identity falls somewhere under the transgender umbrella. There are straight autistics. Queer autistics. Autistic people who are otherwise abled in every conceivable sense, and autistic people who are multiply disabled.

And so often, so many autistic people remain invisible. Their stories are not seen, heard or read. And others like them don’t get to see themselves. In this Toast interview from March 2016, Neurotribes author Steve Silberman – a neurotypical person, but a fantastic ally and signal-booster – describes a telling conversation:

Recently, I was on a plane talking to a young black woman who worked in D.C. When I told her that I’d written a book about autism, she said, “Autism is a white-people thing, isn’t it?”

If you’re autistic, but you don’t see yourself in any of the available portrayals or representations of autism, how can you fully see yourself as an autistic person? How can you identify as an autistic person?

How can you seek diagnosis?

Get understanding? An explanation? Support? Access to services?

Being self-aware

People with privilege often talk over minority or marginalised groups.

Ableist parents and health or education professionals might talk over – and very loudly about – the nonverbal autistic person sitting right in front of them. Autistic adults often feel “talked over” online by neurotypical-run autism organisations and groups.

Health professionals and journalists speculate that transgender children “might be autistic” without being able to comprehend that the two things are not mutually exclusive, because they talk over the heads of, and fail to hear the stories of, #actuallyautistic trans adults.

In professional settings, women are criticised as “bossy”, “domineering”, or “nasty” for demanding even a fraction of the attention or recognition their male colleagues and counterparts get – and this situation is further compounded when colour, sexuality, and (dis)ability come into the picture.

One thing I’m a little nervous about, in attending the SEED workshops, is the potential for my autistic tendency to hog a conversation – to talk over others – to prevent other voices in the room from being heard; other stories being told. After all, I’m autistic and female, but in other respects I’m fully accustomed to being perceived as far less “other” than many. Other aspects of who I am put me in a position of relative power and privilege.

I’ve been informed that a timer will be used to allow everyone in the space equal time to contribute, which will test my anxiety levels. My brain’s conscious-social-interaction-analysis machine might well go into overdrive at times, and there might be moments when I feel exceedingly uncomfortable, and I will need to get out and get some air. But I believe all of this will be worth it for the potential learning that will take place.

Because it will be vital for me to hear other stories.

And at times the people who see, hear, or read the many and diverse stories of autistic people will be made to feel uncomfortable. They will be challenged. But they will need to be self-aware, and accept that discomfort, if it allows those stories to come through.

The more people like us – in all our complex, myriad forms – are visible, the more we can see ourselves. And the more the world can see us for the humans we truly are.

And our lives, identities, and experiences will no longer be reduced to a single story.

Inclusion: getting on with “just learning”

Eight years ago, a long time before I was officially diagnosed as autistic, I was a mature student studying full-time for a Masters degree. One of the best years of my life – a year of total immersion in learning, with minimal worldly distractions. A time of luxury, in many ways.

This meant, of course, an awful lot of reading, and occasionally, having to borrow books, using a SCONUL access card, from the libraries of other universities than my own. On one occasion, I forgot to return a book from another institution by the due date, and incurred a fine as a result (many universities no longer fine students for overdue books, but this was eight years ago).

On visiting the service desk to return the book and pay my penalty (once I’d belatedly realised my error), I mentioned that I was used to receiving email reminders from my home institution about book return dates, and so I’d expected this institution to do the same.

The staff member’s comment?

“Oh no, we can’t be expected to do that. Students need to be able to organise themselves and manage their lives. They need to keep track of what books they’ve borrowed.”

Now, I’m a person who experiences severe problems with executive dysfunction. I have great difficulty planning and organising, and an appalling working memory. I now know this to be part and parcel of my neurocognitive differences, but at the time I used to believe that, despite evidence to the contrary (a 2:1 in my undergraduate degree; more-or-less consistent full-time employment since graduating; being on track for a Distinction in my MSc), I was a bit stupid and lazy.

But the point is that, back then, as now, I needed reminders to keep me on track.

My brain already had far too much to process without having to remember extra minutiae like book return dates. Having decided to return the book, I had to go through an arduous process of making preparations for my journey to the other institution, working out how I’d get there, how much time I’d need, whereabouts in the library I’d need to go to return the book, “scripting” what I might need to say to the staff member and what they might say in response, and all the other, tediously, frustratingly granular but necessary details an autistic person tends to need to plan out in order to avoid nasty surprises (which mean even more exhausting mental processing!) or possible meltdown. All of this on top of knowing that my book was late back, and already worrying that someone else might be waiting for it.

But it wasn’t just about my own executive functioning issues.

I’d started my MSc not long after top-up fees had first been introduced in England for undergraduate degrees. Many students, then as now, were having to hold down jobs as well as studying, just to make ends meet. Added to that, those students with disabilities or chronic illnesses, those with parenting or caring responsibilities, commuting students, those with unstable home environments, financial worries, and many more. An awful lot of students had an awful lot of other things on their minds besides studying, and returning library books.

Cost and resourcing aside (and yes, I’ve always been aware these are an issue – I worked in student support prior to beginning my MSc), was it really such a mollycoddling, infantilising thing to introduce a system of email reminders?

I thought about all of this back then, without even realising at the time that I had a valid neurological reason for needing a little extra help with organising myself.

This wasn’t about making things “too easy”. This was about removing a barrier that, however seemingly trivial, might have got in the way of some students’ ability to just get down to the business of learning.

And the same goes for teaching.

There are certain things I’ve always done as a teacher (I teach enterprise and entrepreneurship skills to university students, by the way).

I have always been instinctively drawn towards workshop-style delivery methods: session structures in which presented content is broken up by interactive exercises (two hours of straight “lecturing” would bore me as much as it might some of my students); classroom layouts that allow me to move amongst my students as they work (appeasing my need for constant movement to keep me grounded and relaxed); activities that focus on the application of what is being taught (because it’s simply logical to teach what I teach in this way. My subject is practical. You can’t learn it without practising it and applying it).

I like plans. Session plans. Module outlines. I like to match up my resources with the activities I have planned. I like to estimate and allocate appropriate time durations to activities (factoring in time, of course, to “mop up” after any unforeseen technical hitches, late starts, or student-thrown curveballs). I like the activities I’m using to be fit for the purpose for which they’re being used. I was constructively aligning my learning outcomes, teaching activities and assessments before I even knew “constructive alignment” was a thing in learning and teaching.

And I like well-organised resources. Well-structured, well-written handouts; good variety of online resources in different formats (and the same information presented in a variety of different formats); effective use of colour. And, again, fit for purpose. It seems logical to me that, since people have a variety of learning styles (and that, also, they learn differently depending on the situation, and the subject they’re learning), it would be prudent to offer opportunities to respond to, and work with, such a variety.

Basically, I like to be in control. It takes a lot of planning and preparation, but once I’ve done that, I’m (usually) relaxed, confident, and ready to go. Effective design of learning experiences is just good teaching, but being systematic about it also allows you to think about your learners.

But I also like experimenting with my teaching, and trying out new approaches – especially if I can see a way in which they might solve some problems for either me or my students. Because solving the problems encountered by a few can often result in a better learning experience for everyone.

I’m open to working with technology, for example – as long as it fits what I’m trying to do, there’s a genuine way it might be helpful to my teaching, and any potential benefits aren’t completely outweighed by extra time and effort.

I’m writing this after spending much of today at a work seminar on lecture capture (making audio, and sometimes video, recordings of live lectures, synchronised with any display output from a computer). It’s not a technology I see as a natural fit with my style of teaching, because I don’t “lecture” (I am, however, exploring using personal capture software to record smaller chunks of material that I can make available to my students online).

But I can imagine its value, because I remember being an undiagnosed autistic undergraduate, sitting in lectures in which not even an overhead projector, let alone slides, was used (this was the late 90s/early noughties, folks, and I was studying an arts subject). I had to rely on listening to taught content delivered almost entirely through speech – a medium I process far less well than written or visual content. It was exhausting.

Having that lecture material available as recordings, being able to review it at a time that worked for me, digest it in smaller chunks, and give myself the opportunity to reflect upon it, would have been invaluable.

Making “reasonable adjustments” is not about dumbing down. Even with those adjustments in place, some learners (or employees) will still find learning (or working) a struggle because the world is not set up for them – they do not fit with the “default”. But making those adjustments can remove at least some of the barriers which get in the way of learning or working.

Most disabled students just want to learn their subject – the same as any of their abled peers. Most disabled working people just want to be able to do their job. I know I do. I’m aware of my difficulties every day. And so I need a number of “reasonable adjustments” to minimise the effect of those difficulties on my ability to do my job. That doesn’t take away the difficulties entirely. Far from it. Which is why many of us need so much downtime. Because just doing what everyone else does “naturally” takes so much energy and, in my case, mental processing power.

We’re having to work harder. All the time.

I’m not suggesting technology as a panacea. I need more than email reminders. I’ve spent years teaching myself various time-management and organisational approaches to bend my wayward executive function into shape. Many of my strategies work really well, most of the time. But there are still times when I, a 36-year-old professional person, need direct help from my line manager with prioritising and scheduling, because my brain has too many tabs open, and too many applications running. Sometimes, things fall down, or things slip through, and I need backup.

Sometimes, yes, I need a text message or an email reminder.

Students still need real human beings to scaffold their learning, facilitate their skills development, and support them in becoming learners who are as independent, and autonomous, as they can possibly be. But sometimes, people need backup, and sometimes, in teaching, technology can complement the human, if the human employs it well.

At least several times a week, I “keep it together” during the working day despite a battery of person-to-person interactions, triggery social media exchanges, unexpected occurrences, unforeseen problems, and multisensory information overload, only to arrive home and feel the need either to: a) go straight to bed to ward off an impending migraine; or b) shout unnecessarily at my gorgeous-but-noisy small children because my sensory tolerance levels are so low.

Like many autistic people, I have extreme reactions to too much information, because I take in so much of it at once, and I struggle to filter out the unimportant stuff.

But in today’s world, information overload can affect everyone. Our lives are just so bloody busy, and there’s just too much God-damned information.

Whilst we might wish the situation to be different, we must recognise that having nothing in the world to think or worry about other than your studies, is a luxury, and a privilege, that very few students have today. It would be arrogant and ignorant to assume otherwise.

If educators can ease that load a little and allow their learners to actually focus on learning, that surely can’t be a bad thing.

For all concerned.

[Image credit: Sam MacEntee]