Is this where our history ends?

1953. New York, NY by Vivian Maier VM1953W03395-03-MC
1953. New York, NY by Vivian Maier VM1953W03395-03-MC

I was going to spend today reading, but I decided to stop by the Vivian Maier website… and now it’s got me thinking. This photograph she took of New York City in 1953 says amazing things about the differences between then and now. There are no cell phones. There are no screens. There are only people watching what’s going on immediately around them, interacting with their world. They are making the world as they live in it… and now we are looking at pictures of them having done that already.

Because now we don’t actually participate in our worlds. We simply film or photograph it for others. Or watch the images others have captured — of the past, distant or recent, which we haven’t participated in. Because, well, we’re looking at our screens.

And it occurs to me that, like classic rock on the radio, our media are suspending us in time by consuming our attention on things that have nothing to do with our present. We’re so busy looking at what used to be, or what we missed, or what may be coming in the future, that our present is deprived. Dessicated. A thin shadow of what the past once was.

And then there’s Vivian Maier… A few years ago, I learned about this enigmatic street photographer whose work was discovered after a storage container sale in Chicago. She had thousands upon thousands of photographs — rolls and rolls of undeveloped film — stashed away. And not until a real estate guy named John Maloof bought the stash and started developing the pictures, did the world realize her work existed.

Vivian Maier is an enigma to most. She focused almost exclusively on her work, taking jobs as a nanny to get room and board and some spending money… while she hauled her charges all over creation and took pictures of the world around her. She had few friends. She was leery of strangers — especially men. She tended to dress in men’s clothing. She was standoffish. Some of her former charges called her “cold” and “cruel”, if I’m remembering the documentary correctly. She had a rich life hidden behind the scenes — close ties to French relatives who loved her, apparently. And her work was exemplary. Prodigious. Prolific. Highly detailed and nuanced.

Without getting into armchair diagnosis of Ms. Maier, I will say that much of what she did, I would fully expect an autistic woman to do. It sounds so familiar, absolutely super-sensical, so logical and well-justified. If photography is your Primary Focus — and it apparently was for her — and you’re fundamentally autistic, then you’re not going to waste a lot of time on needless social interactions, wearing clothing that binds you and holds you back, or taking jobs that detract from your Calling.

Those things that made her what she was also made her a mystery to others. Her former charges, now grown up and well into middle-age, talk about her in tones mixed with annoyance, fear, and puzzlement. Just as I’d expect neurotypically developing children to talk about an autistic nanny. Just as I’d expect any PNT person to talk about an autistic person who spends a lot of time with them, controlling many aspects of their lives.

 

 

 

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Turning up for work #autism

“The toxicity of poor design in the workplace for autistics can’t really be overstated.”

The other side

IMG_1891 #3 in the Orphaned Identities series

(A photograph from my Orphaned Identities series.) 

I was recently commissioned by the Arts Council, to undertake a case study of my practice as an autistic arts professional, in order  to design a series of access measures – which may also be of benefit to others. I’m learning a great deal, some of which I share here in the hope that it will contribute to the conversation about access at work.

I research at the coalface of freelance work and in conversation with other autistic professionals. Patterns are emerging at this midway point in my funded work.

This study has thrown up something important. Namely that there can be a real difference in perceptions about what ‘turning up for work’ means when collaborating as a freelance.

In my own case I’m learning that my standards are pretty high – perhaps usually so. Also…

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Let’s see what I care about today…

three abstract people figures talking to each other
I have the day off today.

It’s pretty amazing, actually. I generally work 7 days a week at things other people need me to do. I don’t usually mind it, but it’s a glorious luxury to be able to take some time to listen to music, read, research, and discover new writers I never knew about before.

My latest discovery is Randolph Bourne, a radical thinker of the early 1900s (he died at the age of 32), who had a fair amount to say about war, society, and so forth. I don’t know enough about him, just yet, to really say much… other than he’s my latest discovery. And since he came from a town in New Jersey I used to live near, there’s a little bit of a connection I feel — if it’s possible to connect with a complete stranger who’s long dead, who hailed from a part of the world I tend to associate with some very challenging times.

I’m trying to not drink any more coffee. As much as I’d love to, it gives me a headache if I drink too much…. Water, though! I’ll drink water. That’ll be good.

I really do enjoy lazy Saturdays like today. It gives me time to unwind and just think. My day-job is way too frenetic, with far too much activity and – God help me – so much at stake!!! – it does get tiresome, I have to say. All that excitement… And for good reason. I do work in a situation that calls for plenty of vigilance and hyper-diligence. It’s just part of it.

Still and all, I do relish the times when I’m not in the thick of that.

Reading and exploring… following links at websites that uncover whole essays preserved for the duration of the website’s life… reading the words of someone I actually agree with… taking a break from the churn-and-burn atmosphere of the still relatively freshly minted 21st Century… reading the words of someone who knew how to spell, how to punctuate, how to put words together without autosuggest or autocorrect or auto-punctuate. What a pleasure. And most of all, to read the words of someone not propelled ceaselessly forward by the relentless fight-flight frenzy of the digitally driven world.

As time goes by, as I realize more and more just how much the digital world (and electronically delivered media in general) have fried my autonomic nervous system, and the ANSes of countless other people around me… as I witness increasingly with each passing day, what harm that does to the very existence of complex, higher reasoning… as I find myself unable to either listen or respond to the hue and cry of the wrong-doers and the wronged, as each side is so profoundly limited by the rightness — the righteousness — of their respective positions, which refuses to budge an inch, a centimeter, a millimeter, in response to perceived “challenges”…

Sigh.

The whole thing just makes me tired. It has the same effect on me as a gall bladder attack — it’s exhausting in ways that are hidden but very present, which come upon me suddenly in a rush of illness that tells me in general that I’ve not taken good enough care of myself, but offers no immediate relief, only the gradual, eventual re-gaining of healthy ground, so I can just go about my regular business without the constant nag of pain and self-imposed suffering.

I do it to myself with my media exposure, as well as my lapses in diet… I do it to myself by getting sucked into outrage and disgust and frustration, like so much greasy food on a slipper plate. I invite this pain and suffering on myself. In the steady progression of my ill-considered, ill-managed choices, do it to myself.

So, today I’m undoing it.

Yeah, I’ve spent a bit of time on Twitter, poking around, here and there.

And while I got more than my daily dose of human folly, I also found a reference to Randolph Bourne, which has brought me plenty of joy, just in the last few hours. I’m going to marinate in that some more. Print out some pieces. And read the words of other writers who worked prior to our digital age. Simone Weil. The Stoics. Folks who actually put some extended thought into their work and based their words on consideration, rather than knee-jerk reaction.

Folks who invite me to do the same.

What do I care about today? Peace. Of mind. Of body. Of life. Just some peace. And the cultivation of conditions that foster it.

I may go out for a walk in a bit. Or I may work on my book. That remains to be seen. I need to do some work in my front yard… but it may rain, so maybe not.

Dunno. I’ll figure it out.

But whatever I do, I need to care about it.

Or I’m not going to bother.

My parents never could have filled out those evaluations

family with parents in focus and kids in blur

So, this showed up on Twitter a few times in the past days:

Sex Differences in Parent-Reported Executive Functioning and Adaptive Behavior in Children and Young Adults with Autism Spectrum Disorder

Emily I. White, Gregory L. Wallace, Julia Bascom, Anna C. Armour, Kelly Register-Brown, Haroon S. Popal, Allison B. Ratto, Alex Martin, and Lauren Kenworthy

This study is the largest to date examining executive function and adaptive skills in females with autism spectrum disorder (ASD). Its primary aim was to utilize parent ratings of real-world executive functioning and adaptive behavior to better understand whether females with ASD differ from males with ASD in these areas of everyday functioning. We compared 79 females with ASD to 158 males with ASD (ages 7–18) who were statistically matched on age, IQ, and level of ADHD or ASD traits.  . . .  Females were rated by parents as having greater problems with executive function on the BRIEF. Parents also rated females as exhibiting more difficulties than males on the Daily Living Skills domain of the VABS. There was a correlation between increased global EF difficulty and decreased adaptive ability in both males and females. Our results indicate relative weaknesses for females compared to males diagnosed with ASD on executive function and daily living skills.  . . . These findings indicate specific liabilities in real world EF and daily living skills for females with ASD and have important implications for targeting their treatments.

While I do think it’s helpful to actually be studying girls on the autism spectrum, I honestly have to wonder how accurate the parents’ view of their kids is/was. I know that my parents had some very strange ideas about what was going on with me, as a kid. I was under constant pressure to perform to their specifications, and when I succeeded, I became even less visible to them — because I wasn’t failing to comply with their (unrealistic) expectations for me.

Of course, I was usually in trouble for one thing or another, and that didn’t help my executive functioning at all. I remember many a time when I simply couldn’t finish a job — or start a new one — because of extenuating circumstances. I got overwhelmed. Blinded by the bright sunlight. Loud sounds like the vacuum cleaner hurt my ears, so I couldn’t do that chore on Saturday mornings. The smells of bathroom cleaners nauseated me, which made me work slower — and appear less capable. I screwed up things left and right because of my sensory issues and general state of overwhelm. I was always tired. I used to go to bed before 10:00, while all the other kids stayed out late and played. I was exhausted. All the time. There was no way anybody could get an accurate reading on my abilities, because I rarely had the opportunity to function when I was at my best.

And certainly never under conditions that I chose and could control. I was always forced to operate in situations where I was at my worst — and then I caught sh*t for not living up to everyone’s expectations. I get tired, just thinking about it.

I have to seriously wonder about the ability of parents to estimate their daughters’ capabilities, because of my experiences. I know I’m not alone in this. So many of the expectations of girls are unrealistic, from the foundation up. When you’re different, that doesn’t necessarily mean you’re disabled. Or that you should get some sort of intervention to make you more compliant. It may actually mean that you’re under more pressure, which means you have fewer resources to devote to executive functioning or figgering out WTF people expect of you. But because it looks so easy for the other girls, you’re compared unfavorably, time and time again.

I wish I could see the exact measurements, to see how the girls were graded. I also wish I could see the conditions that each and every one of the girls were living under. Not that any of the parents would have been neglectful or abusive (though that can be in the eye of the beholder). Rather, are the living conditions of those girls inherently more challenging than ones faced by boys because, well, they’re girls?

Or maybe they’re biologically female and/or gender-assigned as girls, but they’re actually non-binary or they’re “little transmen in the making” (please don’t burn my house down for using the wrong terminology – I’m trying to be playful, fer Chrissakes). Wouldn’t their gender differences / struggles have an effect on their presentation and/or abilities as well?

The authors of the study seemed pretty well aware of these kinds of limitations (bold emphasis is mine):

It is necessary to recognize the limitations of this mainly exploratory study. The measures of both EF and adaptive ability are based on parent report and lack the additional input of other adults in the participants’ lives, the participants themselves, and reliable lab-based tasks. Although this study does not provide indications of the etiology of these differences (e.g., whether parental bias based on sex-specific expectations for these skills drove sex differences), it is notable that the differences in adaptive behavior and EF in this study were found on measures that are either sex normed or derived from a balanced male:female standardization sample. It is important to recognize the possibility that utilizing norms based on typically developing youth could mask ASD-specific sex differences.

and

Like others in the field, we have conceptualized individuals in a binary way (male vs. female) when in fact there could be many more profiles, or possibly no difference in profile, as we include those who are transgender and gender nonconforming. Given high rates of gender variance in people with autism [Strang et al., 2014], it is important to include these underrepresented groups in future research.

Given the present findings and input from selfadvocates about the propensity for females to compensate for social and communication deficits, increased clinical and research inquiry is needed into distinctive cognitive and behavioral phenotypes in females with ASD. This study also makes clear the importance of evaluating functioning outside of ASD-specific symptoms, into related domains that have major impacts on quality of life and overall daily functioning. Also, paying particular attention to . . .  getting the complete real-world picture of a female’s situation.

So, that’s good. It’s always nice to have researchers see that part of things more clearly… unlike other research I’ve read lately, that actually used their limitations as a justification to follow their in-my-view-deeply-flawed line of reasoning… straight to the clinical cash register.

Ultimately, though, I do think research based on parental observations is… tricky. Especially if the parents themselves have blurred vision from their own issues or limitations. What parent doesn’t have their own “baggage” to haul around? And what parent isn’t at least a little blinded by the hopes / ambitions they may have for their kids’ maturity? Especially with girls.

Yes, especially with girls, our variations so often get called out as deficits. Our differences are punished socially and personally — sometimes severely. After all, we’re females. We’re supposed to be the culture-carriers of the human race. If we fall down on the job, what hope is there of humanity’s future? I’m only being partly facetious. That line’s been laid on me so many times in my life, I can’t even begin to say.

I just wish I had counted all those times, so I’d have a good body of data to refer to. Sources. Citations. And so forth.

Well, anyway, at least this paper is a step in the right direction. The authors weren’t total jerks about their work, which is very heartening. And while I do differ with some of the conclusions drawn — mainly because I don’t feel extenuating circumstances of the girls’ lives, including gender expression pressures and social costs exacted on a daily basis, could have been factored into all of it — it’s still a start.

And when it comes to women and girls on the autism spectrum, we need more of that.

You can get limited access to the original paper here:  http://onlinelibrary.wiley.com/doi/10.1002/aur.1811/epdf?referrer_access_token=IW-FAuQkXF-Jxngb3PBDD04keas67K9QMdWULTWMo8PywqLXap6ih90kEZ-P27CZbOh6WHDJJ9cl-95q-zflFMvQ-ylh56ypdC-QI1mkdMqs5SH5iJvPXtLg0fz7PmVx5JoFIUbNE31_xC9OnsH2NivXjmjuI9Ly6KpvW7j-c_lU0mr0kstMuzyfToIfswF-PnGiMfLrT3RjDDSgwhdUBA%3D%3D

I do recommend you give it a read, if you’re so inclined.

Sweet, sweet rest. Sweet, sweet relief

I’m working from home today.

I’m tired.

I’ve done some work.

Now, time for a nap.

So I can get up later and feel human again.

And do more work – which I actually really enjoy, when I’m not exhausted.

Back to bed.

For now.

Sharing: Editorial Perspective: The use of person-first language in scholarly writing may accentuate stigma – Gernsbacher – 2017 – Journal of Child Psychology and Psychiatry – Wiley Online Library

Ah… here’s progress…

three figures with one close up
How we talk about each other matters

Abstract

Numerous style guides, including those issued by the American Psychological and the American Psychiatric Associations, prescribe that writers use only person-first language so that nouns referring to persons (e.g. children) always precede phrases referring to characteristics (e.g. children with typical development). Person-first language is based on the premise that everyone, regardless of whether they have a disability, is a person-first, and therefore everyone should be referred to with person-first language. However, my analysis of scholarly writing suggests that person-first language is used more frequently to refer to children with disabilities than to refer to children without disabilities; person-first language is more frequently used to refer to children with disabilities than adults with disabilities; and person-first language is most frequently used to refer to children with the most stigmatized disabilities. Therefore, the use of person-first language in scholarly writing may actually accentuate stigma rather than attenuate it. Recommendations are forwarded for language use that may reduce stigma.

The use of person-first language in scholarly writing may accentuate stigma

Person-first language is the structural form in which a noun referring to a person or persons (e.g. person, people, individual, adults, or children) precedes a phrase referring to a disability (e.g. person with a disability, people with blindness, individual with intellectual disabilities, adults with dyslexia, and children with autism). Person-first language contrasts with identity-first language; in identity-first language, the disability, serving as an adjective, precedes the personhood-noun (e.g. disabled person, blind people, intellectually disabled individual, dyslexic adults, and autistic children).

Numerous style guides, including those issued by the American Psychological Association, the American Medical Association, the American Psychiatric Association, the American Speech-Language Hearing Association, and the Associated Press, prescribe that writers and speakers use only person-first language and avoid completely identity-first language. For example, the Publication Manual of the American Psychological Association (2010, p. 72) and the American Medical Association Manual of Style (2007, p. 416) explicitly tell writers to ‘put the person first.’

Read the rest: Editorial Perspective: The use of person-first language in scholarly writing may accentuate stigma – Gernsbacher – 2017 – Journal of Child Psychology and Psychiatry – Wiley Online Library

Conflicted on Twitter

I’ve had these same issues, myself, time and again. Twitter is only useful to me to the extent I can mute and block the “dust storms”, so I can actually see the stuff that’s valuable to me — research, links to blogs, extended reading material and various discoveries that I’d never find on my own.

I use LarryFilter to hide a lot of words in my browser, and I try to mute certain words in the Twitter settings. Those make things actually tolerable, so I can stay.

Flying yet falling

I’ve been having a few issues on Twitter recently.

One of the first pieces of advice I was given when it was confirmed that I am on the autistic spectrum was to go online. There are many, many autistic people sharing their experiences on social media, and the idea was that I could learn from them, gain support, and meet a few people.

I am no stranger to social media. I am in my 40s and am computer-literate. I was using message boards to chat to people frequently before Facebook and Twitter were invented.  I have many friends around the world on Facebook and already had a work-related Twitter account. I have used these media to connect with people for a variety of reasons in the past and so was open to trying this specifically with respect to meeting other autistic people. However I have been surprised at the type…

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My spine is bent – but I am not

x-ray of ribs and bent spineSo, ever since I found out the details about this scoliosis business, I’ve been stretching my neck and back in different ways. I can really tell a difference between my left and my right. The bend in my back is to the right (the x-ray above is the view from the front), and my left is tighter, much less mobile, than my right.

I’ve been focusing more on getting my left side to loosen up, and it’s been working. Suddenly, the colors are brighter. And I get this amazing rush of energy… where I typically have a nagging, dull, dragging sense. I’m also not so down on myself about not being able to stretch out the left side of my back. No kidding — my spine is bent around to the right, pulling stuff out of alignment. All 250 mm of it.

I need to look up those vertebrae. Which ones are they? A bunch of them… T3-8? T4-9? Who knows? I don’t have the full back to count from. So, I’ll guesstimate. Anyway, there are 9 of them involved, that I can see on the x-ray. I love imaging. Especially my own. I can spend hours examining one x-ray or an MRI. And with a 3D viewer, MRIs get even better. Pretty amazing, actually.

Anyway, I was talking to a guy I work with who also has some scoliosis. He was identified when he was a kid, but they never did anything about it. He’s had a bunch of health issues, but who knows how much it has to do with his spine? He does have back issues… but he’s pretty philosophical about it.  He doesn’t make a big deal out of it.

I really don’t want to, either. I mean, I’ve been living this way for years and years — decades, really. Now I’m going to get even more “bent out of shape” about it?

I’d rather not.  So, I won’t.

I’ll do my daily exercises, do more stretches, take care of myself, and keep chugging along. It’s what I do best.

How it feels to live in my autistic innerworld

My world is not lonely, either. I quite like it here in the privacy of my own mind…

the silent wave

Come, my pretties. I’m picking up hitchhikers today, in the safest of senses. We’re not climbing into my truck; we’re climbing into my brain.

My brain can be perceived as a map, with different towns representing concepts, subjects, and miscellaneous thoughts. The roads between them link them together in unusual ways, with scenic winding routes and express, direct flights between towns one might not expect, but somehow manage to make sense.

It’s a busy place, with lots of traffic. Everything gets to move, all things are considered. That ant crawling on the balcony railing? Gets a perspective, as I imagine life and the universe through its eyes. There’s no reason it doesn’t deserve it.

And so it is with everything else, too.

There are some shortcuts, too, like a Favorites directory of most-visited links along the margin of an Internet browser. Shortcuts to unusual topics that the average mind of…

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