Sharing: The downside to being (autistic and) “bright”

This post resonates with me SO. MUCH.

I’ve often labelled myself as “stupid” because there have been times when there was a mismatch between my academic and intellectual ability, and my ability to “apply myself”.

Situations which puzzled me – why couldn’t I “just bloody well get on with it”?

And other situations where I was required to document “progress” towards something, which seemed pointless to me, as I’d got to the end point without having to practise or plan beforehand (I put together my entire GCSE Art portfolio, making “connections” between all the individual pieces, AFTER I’d actually produced all the artwork – listen, the art just came to me, alright?).

And situations when I come across as horribly bad-tempered and rude because I find interruptions and task-switching so damned difficult.

This post explains things so well.

the silent wave

“You’re so smart; why can’t you do this or that?”

“You could have gotten an A, if only you’d done your daily work/homework.”

“I know you’re capable.”

“You can do better.”

“You’re better than that.”

Uh, thanks?  But when people said these things, I still felt greasy and heavy inside.

Because those statements aren’t actually compliments at all.  The source-person of the comments might intend them to be, but they’re not.

That’s why I felt a little “off” about saying Thank You.  In fact, I just stared, making agonizingly uncomfortable eye contact, trying not to look “guilty” but failing, because I know that somewhere, somehow, despite my most concentrated efforts, I had screwed up.  So as the seconds slowed to a syrupy crawl, I would pull all of my internal willpower together to maintain my composure, the best I could muster being that uncontrollable sheepish guilty look, the only expression…

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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.

Fallout

I have a bruise on the ring finger of my right hand. And it’s all my fault.

Or is it?

The morning rush after a terrible night’s sleep. My daughter has a cold. She was up for much of the night coughing. And I was up with her – feeding her medicine, wiping her nose, drying her tears, cuddling her. Both of us are very, very tired.

The little boy is teething. My husband is up, but my son knows from my state of dressed-ness and ready-ness that I’ll be out of the house soon, and he wants to be with me while I’m still here. He’s screaming with the pain of his inflamed gums.

Daughter is demand avoidant because she is tired and unwell. It’s been a struggle to get her dressed for school. But we’ve succeeded.

And just as I’m about to take her to the bathroom and help her brush her teeth, I open the curtains in her room, and accidentally knock one of her Lego creations onto the floor.

And no matter what I do, I can’t put it back together exactly as it was.

And I need to get to work. My boy woke us far too early, so I might as well get out of the house, start my working day early, and come home early. But the Lego creation is broken. And my daughter needs her teeth brushed. And she’s tired. And I’m tired. And my son is crying. And my daughter is upset. And it’s all too noisy. And I can’t stop people being upset.

And I’m upset.

And something snaps.

I rush out of the room, and hit my hands repeatedly into a nearby wall. The wall is inanimate; it can’t feel pain, it won’t bleed, and it won’t fight back.

Only this time, I hit too hard.

I have a bruise on the ring finger of my right hand. It’s not huge, but it’s there. The finger is swollen. It hurts.

Logical, objective reasoning should have suggested an alternative. Some other way of getting the vestibular or proprioceptive release I was evidently seeking. I could have windmilled my arms; spun in a circle; jumped up and down on the spot. I could have flapped my hands extra vigorously.

But in that moment, my reaction was uncontrollable. Unavoidable. I succeeded in being far less self-injurious than I might once have been. But that violent release still felt necessary.

But now I’m fine.

My day is well-planned. My work schedule has a structure to it. And I’m looking forward to the things I’m going to be doing today. It should be a good day, despite how tired I feel.

Soon my daughter is fine. I brush her teeth. My husband gives Calpol to our son. I give them all enormous hugs and kisses before I leave the house. They hug and kiss me back. But my finger still hurts.

I’m a “high functioning” autistic person. An “Aspie”.

And yet here I am, with a bruise on the ring finger of my right hand.

From hitting a wall in reaction to some broken Lego.