#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.]

Advertisements

#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.]

I’m not “gifted”.

[Author’s note: I’m kind of less happy with this article the more I reflect upon its subject matter. I fully acknowledge it’s not entirely credible from an ‘academic’ standpoint – I kind of didn’t get what “gifted” meant in technical/clinical terms. I’ve had a few conversations with folks more tapped into the research behind, and personal experience of, “giftedness”/asynchronous development/twice-exceptionality and so on, and I realise things aren’t as clearcut as I thought (and actually, there are ways in which I, myself, DO fit this profile). Still, this piece is mostly about emotional response. And in that respect, most of it still stands.]

[Trigger warning: discussion of ableism, and mention of applied behavioural analysis (ABA). Also a hefty dollop of snark, because, well, this topic brings that sort of thing out in me.]


A few weeks ago, a friend shared on Twitter a very annoying graphic she’d come across in a parenting group, featuring an acrostic using each letter of the word “Aspergers”. Now, I could write a whole series of posts about all the separate problems I have with this image, but my fellow autistic Tweeps have those things pretty well-covered, so I’ll just focus on one.

Gifted.

I’m not gifted. I’m bloody clever, certainly. I’ve always managed to succeed academically – for many years with comparably little effort, until it got harder in secondary school as I got older and life made things a little too complicated for me to easily focus and apply myself.

I’m not gifted. I am, however, bloody good at some stuff. Some of it is natural ability – I was drawing far more accurate depictions of human beings at the age of three than pretty much any other preschoolers I, my parents, or anyone in their extended familial and friendship network knew of. Even so, with anything I’m good at that I was naturally able at, I’ve worked hard to shape, hone, and nurture through conscious effort. Hard graft, if you will.

(Not always willingly. I had some natural talent at playing the trumpet but only got properly good at it through playing very regularly and frequently in orchestras and bands. Intentions to diligently practice at home fell victim to my procrastination demons. And as for the visual arts, well, my lifelong – until the age of sixteen – intention to pursue a career in such a field got thoroughly shat upon by a terrible GCSE Art experience that forever tainted that particular special interest of mine. You never forget a good teacher. Or a bad one.)

I’m not gifted. And neither am I a superhero.

I don’t actually mind using the notion of super powers to encourage autistic and other disabled or otherwise neurodivergent children to value, own, and be proud of the strengths that might come with their particular way of being. But for me, it’s not logical to call those strengths “super powers”.

Yes, I have awe-inspiring pattern-finding abilities, super-acute visual and auditory processing capabilities, and sensitivity to even the slightest touch. I can detect many things that others around me cannot see. My capacities for imagination and longterm memory are vivid, multisensory, and three-dimensional. These things feed into my attention to detail and research abilities, my capacity for creativity and ideas generation, and – when I’m not tired – make my view of the world an utterly beautiful one.

My reality would seem, to someone who isn’t autistic, an augmented reality.

But none of these things are super powers. They are just a simple fact that comes of having a brain with vastly more synaptic connections in some key areas, at the expense of “underdevelopment” in others. They just…are.

So when, on the very rare occasion that someone, in a condescending tone, tells me I’m “brave”, “inspiring”, or, indeed (and yes, it has actually happened), a “superhero”, I get pretty riled.

But back to giftedness.

This usually just means “being really good at something”. And one beef I have with the word “gifted” is that it implies that any strengths or abilities that we have are simply freakish aberrations; artifacts in a stream of codified disorder, deficit and deficiency. They can never simply be thought of as things we got good at through hard work, dedicated learning and application, or just natural strengths associated with our particular character, personality, or neurotype. Oh no. They’re “gifts”.

But another problem I have with the word, especially as it appears to be used on the image shared on Twitter but also more generally, is that it implies that unless an autistic person is “gifted” – blessed with some extraordinary “super powers” – they aren’t valid, and there’s no real point in their existing. (See also savant abilities.)

This is dangerous. Autistic people, in descriptions, are often reduced to a list of “symptoms” (I’ve bemoaned this before), and the narrative leads towards an implication that that’s all there is to us. Let’s not forget that Ivar Lovaas, the founder of that aversion-therapy-for-autistics that is applied behavioural analysis (ABA), considered autistic children not even to be fully-formed people. They had to be moulded into such.

But yeah, it’s okay for Aspies, because they’re “gifted”.

Neurotypicals get away with being ordinary or unremarkable. They are the default. And whilst there’s increasing pressure on so many people in post-industrial societies to strive for the best, and continually excel (a paradox if ever there was one), it’s still a darn sight easier to be average if you’re of the predominant neurotype.

But what if we framed it the other way round? Dr Luke Beardon does this very neatly. Neurotypicals have their impairments too, you know.

And just like we amazing, inspiring, courageous autistic and neurodivergent superheroes, neurotypicals have their very own “super powers”.

Look at you, with your ability to read and respond to a social situation within conscious effort! Aren’t you amazing! Your ability to cope with interruptions is so inspiring! I’m totally in awe of how you continue to be so unerringly polite in the face of awkward or even infuriating interactions with others! Your ability to multitask, and also to sit still, are utterly astounding!

You’re my hero!

The truth is, we all have strengths and weaknesses. It’s just that some combinations of these tend to be pathologised; others do not.

And another truth is that someone of any neurotype can be unremarkable. Ordinary. Average. And that really is okay.

None of us should need to be “gifted” to be permitted to be ourselves…or even to exist.


[Featured image description: a bright green Moleskine notebook with elasticated strap, and ribbon bookmark just visible, laid flat against a black background. A pair of glasses is folded and laid on top of the book.]

The same crap, on top of everything different

[Feature image description: close-up view of the trunk of a Weeping Willow tree, viewed from behind the metal railings of a bridge, diagonally leading away from the bottom left to the top right of the image. The tree is resplendent with masses of bright green leaves hanging downwards. Behind the tree and its branches, a calm river, with a grey stone wall on the opposite bank, is vaguely visible. Photo taken in the grounds of University College Cork.]


A couple of months ago, I was away presenting a session at a conference in the Republic of Ireland. I’m a very infrequent traveller, especially abroad, and so I was pretty pleased with how I got on with getting there. Okay, I allowed far too much time between taxi to the railway station and my train’s departure time, and far longer than necessary at the airport before my flight, because I get anxious. Air travel is an unfamiliar activity for me; I wasn’t sure what to expect, I hadn’t travelled from this particular airport before, and I wanted to allow for any unexpected incidents, occurrences, or disruptions to my itinerary. Getting anywhere “just in time” leaves me stressed, agitated, and liable to meltdown at the smallest trigger.

I had the luxury of a day to myself before the conference. Time alone is something I crave, and rarely get. I had a glorious afternoon walking extensively, visiting art galleries, exploring the streets, sampling the food. A lingering bath in my hotel room. Uninterrupted time to read a book. To say that this was refreshing and rejuvenating would be the biggest bloody understatement imaginable.

That evening, there was a pre-conference drinks reception.  Finger foods. Lots to drink. And my God, I networked like a pro. Like a boss, as goes the modern vernacular.

The next day was a full day of workshop sessions. The conference was deliberately “unplugged”, which meant no tech, no PowerPoint, no videos. Delegates had been asked to read papers in advance and be prepared to focus on discussion when in the sessions. The emphasis, therefore, was on listening, and on spoken interaction. I had one session to chair, and another to present. By the end of the day, of course, I was tired. My employers had only paid for me to attend one of the three days, but that in itself was pretty demanding.

Despite the intensity of those two days, I managed well. I enjoyed it. And I had a day off work once I got home to sleep, rest, and recuperate. But throughout it all, there was one thing that bothered me. That angered me.

And it had nothing to do with work, or autism.

It had nothing to do with poor wifi coverage, extra high sensory demands, or fellow presenters not adhering to the strict guidance about the format of the sessions. It had nothing to do with exhaustion, anxiety over social interactions with strangers, or the fact that, upon setting up for my own session, I realised I hadn’t brought some of my kit with me (don’t worry folks; it was nothing essential, and I coped well regardless).

No. It was none of those things.

You see, I have no full-length mirror at home. And so I often move around blissfully ignorant as to how my clothes fit my body, how “thin” or “fat” I happen to be looking on any given occasion, or whether what I’m wearing is flattering or otherwise.

From time to time I do glance at my reflection in shop windows, or the ground-to-ceiling glass panels of modern office blocks (pity any poor person sitting on the other side; but then, they’re probably used to it). And I’m quite particular about clothes and how they look on me.

But a full-length mirror is just one of those things we haven’t ever got round to buying.  The house my husband and I have lived in since late 2006 still resembles a tatty student dwelling. We’ve updated some rooms, but now that we have small children, and a distinct lack of spare funds or precious spare time, much of our home resides in a state of notable dishevelment. Our bedroom doubles as a storeroom, our toddler son is also still in with us a lot of the time, there are other bits of the house we need to work on before we get round to our so-called master bedroom, so buying a pristine new mirror isn’t exactly high on our priority list.

So occasionally I get caught out. Often it’s when I see myself in photos, captured unawares. But that evening, it was a mirror.

Before heading out to the conference drinks reception, I bathed, got dressed, did my hair and makeup, and all the usual “getting ready for an evening out”-type things. I looked in the full-length mirror of my hotel room, to check all was to my satisfaction.

And I looked again, aghast.

I had had no idea how fuzzily undefined my waist appeared in my chosen outfit; how much it merged with my hips; and how much my thighs merged onwards and upwards in the opposite direction. No idea how seemingly vast was the expanse of my (not actually that enormous) belly. No idea just how small and out-of-proportion my bust appeared in relation to everything else.

And to think – oh, silly me – that I’d been pootling about quite happily in this outfit on numerous occasions, enjoying the many textures, patterns and colours of the details on that tunic top, thinking I’d looked okay in it! What must have possessed me? How dare I?

And then I got angry.

Here I was.

A professional woman, here to deliver a workshop based on the highly acclaimed work of my team, its submission accepted on merit after being rigorously assessed by a judging panel. A woman with two university degrees, a postgraduate teaching qualification, and senior fellowship of a national professional body. A wife of a loving husband and mother of two wonderful children. A person with many friends. A writer of words which, on the basis of comments and messages I have received, have resonated with so many. Someone with wayward biomechanics, anatomical oddities and congenital joint abnormalities, and with limited time to exercise because of a full-time job and young children, who has somehow managed still to maintain a fairly decent level of fitness.

And on top of that, I’d achieved everything I had achieved despite years of confusion, torment, anxiety and depression, living in a word that wasn’t build according to my needs; twisting, bending, and contorting my very being to try and fit into a space that was an unnatural fit to me. 

And here I was, worried about my bloody appearance.

Like so many women, I’d spent a lifetime trying to do the same thing to my physical body that I had been doing for so long to my behaviour, my outward personality, and my responses to the world around me. And after all these years, after all that has happened to me – good or bad – I was still preoccupied with wanting my body to be something other than it was. A body with faults, yes. But a body that is mine, that has done so much, and that has been with me through everything.

Even after coming to terms with the life-changing news that I am who I am, that I’m autistic and that’s okay, I was still dealing with the same crap, on top of everything different.

Many autistic people do not care in the slightest bit about what others think of them. But to say that we are all this way is a gross generalisation. I am not one of these autistic people. This is one area where I cannot relate to so many of my neurosiblings.

Sadly, sometimes, I care all too much, and for all the wrong reasons. And that added layer of “womanly” insecurity on top of it all does no-one any favours – me least of all.

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.