at last – my cup of really good, really strong coffee

overhead view of cup of coffee beside laptop keyboard on a wooden tableI spent the past four days on a visit with my parents. I didn’t spend the entire time with them, because my partner and I didn’t meet up with them till late afternoon on Friday, and then we had the weekend with them, and they drove home early yesterday morning.

So, all in all, I had about 67 hours with them, with additional time tacked on, before and after to prepare… and then decompress.

It’s a lot to take in. My parents are very much on the Autism Spectrum, and that means they’re alternately delightful and exasperating when it comes to interacting with them from my corner of the Spectrum. They have their ways of doing things, which are (of course, to them) the Only Right Way To Do Things. And everyone who doesn’t do things that way — especially if it’s us kids — is Wrong and Must Be Corrected.

So, I spend a lot of time around my parents on the defensive, never sure what I can or cannot say, because they’re so enthusiastic about promoting and defending their Proper Way Of Doing Things — and punishing everyone who doesn’t comply.

Ugh, it’s exhausting. I love my parents, and we’re getting along better than we ever have in my 52-year relationship with them, but it takes so much out of me.

Plus, when I’m around them, I can’t do my regular routine. They’re so locked into their way of doing things, they have to constantly hijack me to get me on their schedule. And their pace is grueling and break-neck — always going at top speed, always with the brain dumps about their special interests, always talking, talking, talking… which is utterly exhausting when I’m tired and non-verbal. The more tired I am, the more non-verbal I become, so you get the idea…

Now that’s over. My parents went home yesterday morning, and my partner and I had the day to decompress yesterday. The weather was amazing. I actually got to walk the beach and explore at my own pace. And there was no pressure to stick with my parents’ schedule, because their anxiety won’t let them do anything different.

We got to decompress. I got to relax. I had to do a conference call for work, yesterday afternoon, but that was fine, because it was familiar and got me out of my head.

And today, I woke up in my own bed, I got to have my exercise — first thing — I’ve had my breakfast… and now I get to drink my half mug of extremely strong coffee.

Everything’s getting back on track, and that’s a very good thing, indeed.

 

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I dunno – I just don’t think there’s enough positive stuff out there about #Autism

human silhouette on beach with sunsestNot to mention success stories.

Okay, okay, I get it. We need to build support for folks who really need it. But I think at times that our Autistically rigid thinking keeps us aligned with some pretty rigid support possibilities, many of which simply aren’t available to all of us.

The needs of an Autistic kid in a city may be very different from the needs of a middle-aged Autistic woman living in the suburbs, and they may be very different from the needs of a 30-something Autistic man living in a rural area. And then we have our aging population… men and women… who have been through so much, and now face the double-whammy of becoming elderly (a challenge in society, in general) and having those sensory/social challenges which may become even more pronounced in old age.

I’m worried. Anxious. For myself and all my Autistic tribe. And I’m not alone.

The thing is, I suspect that anxiety takes the edge off my creativity. It locks me into rigid thinking. And it erodes my ability to come up with some really inventive solutions.

Personally, I think we Autistic folks are some of the most inventive people on the planet. For sure. I mean, look around — so much of what we have is the product (I believe) of an Autistic person with an intense interest in One Single Subject. That focus has produced some truly amazing things. And that same focus can help us fix our future.

So, the future… yeah. What does that hinge on?

Well, the past, for one. And also… patterns! Patterns, yes. We plot our course forward by referencing patterns — this leads to that, this causes that, if you do this, you can logically expect that. And we gain a sense of where we are in the world by watching other people and seeing how their lives have shaken out over time.

We are constantly learning from other people, “ingesting” their experiences, learning from their mistakes, and taking cues from their stories. Humans are story-loving creatures, and each of us has thousands of stories of our own that we collect over the course of our lives. They can be based on our own experiences, or they can be from our observations of others. Or we can make them up as we go along. But we have them. We use them. We rely on them to no end.

Yes… stories.

Earlier this week, I was chatting with an older Autistic man who spent time with younger Autistic people. He said he was really alarmed at how traumatized those young people were, how harrassed they were, how on-guard and roughed-up by life they were. These were young people who all had the advantage of knowing they’re Autistic, but it was such a burden for them.

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I personally don’t think we do a good enough job as a community, sharing our strengths and accomplishments… our joys and ecstasy. Autism for me is every bit as much about bliss, as it is about struggle — equal parts, I’d say. But the discussion so often centers around the struggle, perhaps because I think I’m going to get commiseration and support from others who know how I feel. Unfortunately, that’s seldom the case. If anything, it works against me. And I end up getting sucked down into the Pit of Despair, as I perseverate on the idea that somehow, somewhere, sometime, I might get some help.

I won’t… 93.72% of the time. Now and then, I will, but I spend far too much time working towards that 6.28% that’s occasional and intermittent at best.

So, where does that leave me? Sorta kinda where a lot of queer folks were left, back in the 1990s, when so many of us were coming out, but most of the media about being queer (especially movies) were so full of angst and pain and suffering. Suicide, too. Ugh. How many gay and lesbian movies (long before the concept of being queer took hold) showed us being miserable and downtrodden and better off ending our lives? To be honest, it wasn’t altogether unlike what Autism$peak$ has done. And while I’m not 100% on board with comparing Autistic folks to queer folks, all across the board, there are some pretty pronounced similarities.

  • Being different embarrasses our families.
  • They try to make us different — more like them.
  • If we’re lucky, they fail. If they succeed, we’re twisted into a version of ourselves we don’t understand.
  • Ostracism, misunderstanding, violence. Etc.

Anyway, this is a really long-winded way of saying I think the Autistic community could learn a thing or two from the LGBTQ+ community (and yes, we do overlap), especially insofar as the Pride movement is concerned. Celebrating our differences, developing our own culture and community, taking our place in the world just as we are, and having a lot of fun while doing it… There’s real power in that, I believe. And it’s where I hope we go with our Autistic community building.

I’m not gonna tell anybody what to do or how to do it, but I can do something in my little corner of the world. I can talk about my life in positive terms. I can share my triumphs and joys. I can really celebrate the successes of other Autistic folks. I can focus on the good, the strength, the fortitude, the brilliance. None of this takes away from the challenges we have — it’s merely ballast for my proverbial vessel as I sail the high seas of life.

There are so many wonderful, positive things about Autism that get lost in the crisis, anxiety, difficulty, drama, and shame of growing up Autistic. They get lost to parents, they get lost to us. They get lost to society, in general, obscured behind the ignorance and judgment. We go into hiding. Because it’s safe there.

And then, when we grow up, we can be so alienated, so accustomed to hiding, that our actual development isn’t recognized. Or people are so used to looking at us as they remember us, once upon a time, that they don’t give us the chance to shine.

I think that needs to change.

I can’t speak for anyone else, but I plan to change it on my side… do my best to unleash a torrent of writing about how absolutely excellent it can be to be Autistic. It might piss a lot of people off, because it may undermine their message about how we need help and support. But I’m not going to lose the good parts of my life, while I wait around for the government or some organization to meet my needs.

Certainly, it would help… but I think we can do more than that.

Well, I can, anyway.

Raised #Autistic – Lessons Learned

books hanging from bookstrapAll the talk about how Autism diagnoses have skyrocketed in the last 30 years, overlooks one key factor:

Once upon a time, the Autism Spectrum wasn’t pathologized. It was developed.

It was very much a part of life, and there were institutions and mitigators in place to help weave that neurotype into the overall fabric of life.

I was raised in an area that’s chock-full of Autistic folks. Is this abnormal? Not on your life. In fact, it’s the norm. And every aspect of growing up is/was geared towards training individuals how to be responsible members of the community. It helps that it’s a rural area, where everybody has to pitch in, no matter what, so nobody gets a pass to completely drop out of society because of any difficulties they may have. Society needs them, it’s made clear. And whatever they can do — in whatever measure — is not only needed, but required.

Take my aunt, for example. She just passed away last year, and she was probably one of the most “obviously” Autistic persons I’ve ever met. All the classic behaviors, all the classic traits… that was Aunt M. She definitely did not have an easy life, but she lived by a code that placed others first at all times. She had a quote on her dresser that effectively said, “Whatever sufferings I may have, others have it even worse. And in the end, the question is not how much I’ve gotten out of life, but what I’ve given to those who are struggling more than I.

That’s the ethos I was raised with overall, and I can tell you that Aunt M personified that, each and every day. She had her challenges, of course. My mom had to constantly watch out for her, from the time they were both young girls, till the day she died. She was bullied, she was threatened, she was abandoned. And she had intense issues with anxiety and social interactions.

But she lived her life. She lived by principles. And in the end, he had such an important place in life, her funeral was attended by close to 100 people, many of whom relied on her for many things throughout the course of her life.

I was raised in the same way — principles. Be a responsible member of society. Put others first. Realize that others have troubles, too, and rather than thinking about what I need to get out of the social equation, I need to put myself out there and be as helpful to others as I can. It’s not about me. Yes, I have intense suffering and challenges at times. Yes, my life is a non-stop parade of pains and joys — often so intermingled, it’s hard to tell which is which. But in the end, what I contribute to the world is far more important than what accommodations I get to secure my own happiness.

Now, you might dismiss this as being some lofty approach by someone who’s not impacted all that heavily by Autism. But you’d be wrong about that. Everything I have, everything I can do, it’s all been hard-won and paid-for at a steep price. And I’ve been around long enough to realize what a toll it’s taken on me, over the years.

Does that toll matter? Nope. The bottom line, for me, is what I add to the overall human equation. I’m responsible for my corner of the universe. I have to keep it clean and orderly and do my best to not be a liability towards others. I have to keep my own suffering out of view, because what I have to give is far more important than anything I feel I need to take.

All those years, when I was in excruciating chronic pain and some days couldn’t get out of the bed… the short time I was homeless… the times when I’ve had to quit jobs and move on, because the environment was so painful I couldn’t tolerate it anymore… Through all the meltdowns, the shutdowns, the touch-is-pain moments… The one thing that kept me going was that it wasn’t only about me. I had to get up and go to work to support my household. And if I couldn’t manage a full-time job, then I had to find a regular source of income that let me work part-time and still make enough to pay my rent.

The thing that carried me through all those years of intensity and hardship, was my upbringing by parents, grandparents, and a wider community who were all Autistic. Who knew what it meant to struggle, and who still pressed on and pushed me to deal. They didn’t let me off the hook. They kept at me, and kept reminding me of what was Right, what was Wrong, and urged me to do the Right thing. Even when it was impossible, they still demanded that I do my best. No excuses. Just get on with it. Yes, life is painful and awkward, but that’s what teaching and training were all about. I had to learn. I had to be taught. I had to be raised.

There was never the assumption that kids already inherently knew the right thing to do. There was the assumption that adult life is challenging and requires skill, and like any skilled endeavor, that takes training and practice and continuous discipline. The skills I have now, which have allowed me to live a really full life and experience so much that many people only dream about, they didn’t magically emerge from my pristine primal state. They were abilities that were identified, prioritized, and emphasized as the sort of thing that all adults do.

And there was no argument.

Yes, it was tough. Yes, it was challenging. Yes, I still have leftover “stuff” from all those years of training. I was enculturated into an Autistic society, and there were Rules and Regulations for everything. It was rough, at the time, but all the hard lessons have made it possible for me to live my life… regardless.

The skills I developed at just getting on with things, for putting others first, for making the effort to be a contributing member of society — even when I was disabled — made all the difference in the world. Society has a way of looking out for those who support it and contribute, and that’s always been my “safety net”, if I even have one. I make myself useful to others. I contribute. I’m not perfect, I’m pretty weird at times, I’m Autistic, I can be pretty off-putting at times. But in the end, my goal is to make myself an asset to the world around me, not only devote myself to getting my needs accommodated.

That’s all because I was raised by Autistic folks. Those were the Rules.

’nuff said.

“Say what?”

hand near ear with vibration

Well, this is interesting… I’m realizing more and more, just how much my hearing difficulties have affected my day-to-day life, interactions with people, my willingness to engage with others, socialize, try things, and get an education.

I mean, yeah, my overall sensory issues have had a really … dampening… effect on me. Experiencing light touch as pain can be a source of constant distress. Balance issues put me in a constant state of hypervigilance, when I’m “off”. Light and sounds can be painful, too. There’s a reason I go food shopping every day — so I only have to be in the store for 10 minutes at a time (and yes, it works!). All of that can add up over time to a pretty significant trauma load. Even the little traumas, if they aren’t cleared out of my overtaxed system, build up to something bigger and badder than the individual elements, themselves.

And then there’s my hearing. Such as it is. Most of what I hear, if I’m not listening intentionally, is a muffled¬†mmmmmfffftgrrrrlllllnnnnb. And yes, it is maddening for people who deal with me to have to repeat . themselves . every ¬†. single . time . they . say . something . to . me . unannounced. I really feel for them. Because sometimes you just want to feel like you’re being heard, without having to repeat yourself every . single . time.

But what can I do? Unless I’m paying attention to what someone is saying to me, I don’t pick it up. I just don’t.

And it’s getting to be more and more of a pain in the neck. As time has passed and the high tech industry has evolved, I’m finding myself in more and more “leadership” positions, where I’m directing a bunch of lower-paid folks (often on the other side of the world). I’m also responsible for communicating progress to higher-ups. And yes, this is a massive pain in my hind-parts, because those are the least-capable parts of me — phone calls with people who have thick accents over bad internet connections… distilling all the details of the past week in can-do Powerpoints that press all the right “comfort buttons” in hyper-controlling people at a higher pay grade than myself… Keeping lines of communication open with people of all types…

What did I do in a past life to earn this steady stream of demoralization and practically built-in failure?!

I ask you…

It really is kind of funny, if you think about it. Either that, or cruel. Good thing I’m post-menopausal and no longer hormonally inclined to fret about not getting everything right. Good thing I care a lot less about what other people think, and I’ve lived in my body/brain long enough to know not to trust all the terrible things I say about/to myself. They haven’t fired me yet, so I guess I’m doing okay. Plus, I’m ahead of the game, because even at my worst, I do a better job than a lot of non-Autistic folks do when at their best.

So, I’ve got that going for me.

The only problem is… I can’t hear for shit, sometimes. Seriously, I can’t. I don’t think it’s gotten worse for me than it was when I was younger. It’s just that now I have to talk to people a lot more. For something like 15 years, I was a developer, so I could just communicate with my computer and code. Not worry about the people stuff. And I wasn’t saying “How’s that? Can you repeat please?” every 1o minutes.

Ha! I should count how often I do that, these days. Might be eye (and ear) opening.

Anyway, I realize more and more, these days, just how much my hearing difficulties have affected my life. I avoid all kids of stuff because I might not hear properly, and I might A) make a fool of myself, B) get into trouble, or C) actually be in danger. ¬†I can’t do work that involves other people and power equipment, because I might not hear a warning, and I might lose a finger… or an arm. That’s a bigger loss than I like to admit, because I love manual labor. And I would love to be able to support myself while working with power equipment. But at this point, I don’t think that’d be safe.

I also don’t go out much, because I might have to interact with people, and the only thing more lonely than being around people who aren’t trying to connect, is being around people who are trying to connect, but I have no idea what’s going on, because I can’t hear them properly. Sure, I can¬†cue the canned greetings and response, but I’d really like to be able to do more than that. But people just don’t have the time. And when I keep asking them to repeat themselves, they seem to get tired of dealing with me.

I’ve been thinking about talking to my doctor about this. I probably should, because maybe there’s something to be done. I really worry about interactions with the police and other first responders, not to mention other authority figures. Having trouble hearing is a great way to get shot by the police, based on recent history, so yeah — in the interest of living a full life, I should probably look into this.

I just have to prepare properly. I think I’ll write up a description of my symptoms for my doctor, describe my difficulties, and ask her if there’s anything to be done. It might be nice to have some sort of assistive device that could block out all the ambient noise, so I can concentrate on what’s being said to me. The idea of wearing a hearing aid worries me, first because of the distracting feel, second because it can call me out as vulnerable and people might try to take advantage of me, thirdly because I really don’t want people to pity me and treat me differently.

But other people deal with that all the time, so maybe I should quit being so squeamish.

Anyway, that’s my latest “thing”. The hearing situation. Or inconsistent lack thereof. I’m going to learn a little bit of ASL, I think, because I’ve been wanting to do that for some time, now. It’s something to add to my overall skillset. I need skills. And I also need to widen my world a bit.

It’s all an adventure, isn’t it?

Something must be up in the world… but I wouldn’t know.

man in a boat on a lake with mountains in the backgroundWow Рpeople are on a tear tonight.

All kinds of feisty, racing around, slamming into each other… the cops are out en force, and I’ve seen plenty of people pulled over, sometimes with lots of extra emergency vehicles around them.

Traffic on the way home was crazy tonight, with people flying all up in each others’ tail-lights, beeping, roaring… you name it. And this is even more than usual.

Something must be up in the world.

But you know what? It’s been 2 days since I looked at the news, and I have no idea what bees might be in their bonnets. Nor do I care. I mean, I care, but not so much that I’m willing to sacrifice my own well-being for others.

And I realize, that’s what I’ve been doing, lo, these many years that I’ve been paying attention to what other people do in the public arena. What a poor use of time. It’s useful to keep in touch with who votes in my favor, and it’s a good idea to participate in positive change. But all this other… crap that’s all over the news… yeah, it just doesn’t make sense to follow any of it.

Especially when nothing really seems to change much, even after all the upheaval and drama. There are so many other more constructive uses for my time and energy, than “following” the antics of people who are all into the drama for drama’s sake.

Me? I want to actually accomplish something.

So, I do. I’ve been reading a lot, lately. Spending far less time online. Chillin’. And it’s good.

Have a lovely evening — or day, if you’re reading this in the morning.

In search of my flow state

stream flowing through forest with the flowing water in focusI’m in the process of resetting for the new year. Resetting my activities. Resetting my priorities. Resetting my activity levels. I typically do this earlier in the year, when I’m swept up in the New Year’s Resolution blitz.

But this year, I haven’t been feeling it. At all.

It’s not going nearly as well as I’d like. Work is weird. My life is weird. It’s all kind of… weird. I don’t feel like I’m fully inhabiting my own life, and I’ve been so busy with everything, lately, I haven’t had time to stim or reach a flow state for weeks… perhaps since the beginning of the year.

It’s maddening. Probably the worst thing about the way things have gone, for the past months, is the ever-increasing level of interruption in the course of each day. It’s absolutely maddening. As in, it makes me really, really mad. I have to be able to settle into extended periods of thought, in order to be effective, and my current job is preventing that on every level.

Distraction kills, and it’s doing a hack job on my performance at work, not to mention my job, overall.

Well, that’s the job, right? That’s “just how things are” in my current professional corner of the world, and anyone who can’t keep up is left in the dust. Personally, I’d be fine with being left behind. Just cut me a check and let me go. Let’s call it a day and say it was an interesting learning experience, shall we? And let’s all move on to other, better things.

But I don’t have a substantial back-up plan. I’ve been putting out feelers for work, but the kinds of work I’ve been applying for… well, it just hasn’t been a good fit. I got a job offer, a month ago, but I had to turn it down because the conditions were, well, crappy. A longer commute. Into the thick of the worst rush hour traffic in the area. Frenetic pace. Frenzied, from what I was told. In a building where they have chemicals that smell and bright lights that blind. An open work space plan. And not more money than I’m making now.

So… no. Not that.

I put in for some other jobs, and I heard back from what looked like a really good opportunity, but after I responded to them, they didn’t get back to me. I need to ping them again. There’s a good chance they took a look at my resume and realized — Hey, she doesn’t have a degree! — and, like many others, decided I “wasn’t a good fit”.

It’s a little depressing, actually.

But it’s got me thinking… About what is actually the best work for me to do. After being a web developer for 15 years, I gradually shifted into project and program management for the past 8 years or so, because it felt like the software engineering world was closing in on me and I was getting crowded out. I felt like I just couldn’t compete with all the lower cost talent with more updated skills… the people who “fit better” with organizations… or who had degrees. The project/program management space seems to be less amenable to people who literally teach themselves how to do things, than the development space. And while that didn’t hurt my prospects in the past handful of jobs I’ve had, it’s starting to feel like it’s closing in on me even more than development did.

bomb emoji with lit fuse looking down
This is about how my “career” is feeling, about now.

And indeed, the lack of flow is a huge issue. Somehow, I seem to have acquired work that I absolutely hate. Tracking other people’s activities. Communicating to everyone who needs to know about program and project status. Navigating political minefields. Battling for my territory. Making nice with people across the organization. Being interrupted every 20 minutes (or as soon as I get into a flow state). Conference calls. Lots of conference calls. With people who have thick accents and/or are on a poor phone connection. And more interruptions. Travel. Regular business travel, which doubles my workload¬†and completely trashes my routine.

It just feels like a setup. I can do it for so long, then I am completely wiped out. Because nobody sees how much I struggle, and I can’t let on, because that would trash my career prospects like nothing else. And I can’t chance that.

The fact that I’m really good at it, is no consolation. At all.

I mean, seriously, I’m really good at it. I’m a fantastic meeting facilitator, I can communicate extremely well to people who need to know. I know how to work effectively with offshore folks (been doing it since 2002). And I can turn on a dime if the situation calls for it.

But man, oh, man, do I pay for it. In a very big way. Of course, nobody else sees how steep the price is, because they rely on me to keep doing what I’m doing, just the way they are accustomed to seeing me do it.

And seriously, this is no way to live.

I need my flow back. I need to settle into a chunk of code and just work my way through it. I need to cozy up with a tasty algorithm and just do my thang. Seriously, I do.

{pause to take a breath}

Okay, so where does that leave me? Or rather, where does that point me?

Realistically, away from where I am now. And back into the development world. In my former life (before I trained my replacements in 2002 and was then told to go find another job in 2005), I was one of the best of the best at my chosen line of work. Web development. Front-end web development. UI coding. Cross-browser. Cross-platform. Proficient in ‘nix flavors and the command line. Not afraid of anything code-related.

And it suited me. In a very big way. Because I could create things and make stuff work, like nobody else. I could convince browsers to do things they weren’t built to do. I was good. I was one of the best. And I was relieved of my duties by the bean-counters who had no idea what the work entailed. All they knew was that I was “too expensive” and they were convinced I could be replaced.

Hm.

Yeah, as it turns out (having managed a lot of projects involving developers who weren’t even close to as good as I was), I can’t be replaced. My skills are still needed. And my interview and subsequent job offer this past December (for a developer job) tells me that I still have a future in that realm. I tend to get pretty rigid about things and get convinced that since I’ve almost exclusively done project/program management for the past 3.5 years, so I’ve been telling myself that I have to stay in that space. But I don’t. I can shift back to development. I’m the only one who’s blocking myself, at this point.

Plus, I can do my own “thang” in the process. Build tools. For mobile. Just build things that show people what I do — like Temple Grandin recommends. I’ve actually got a pretty impressive portfolio, and it’s not even complete. I need to get focused on completing it, and lift myself up out of this increasingly wretched state I’ve been in, for the past year and a half, when it first started to dawn on me that this was probably not the best job choice for me.

There’s a lot I can do about my situation, right now. I can build my own apps. I can build my own websites. I can do a lot that shows how I work. And I can put the finishing touches on some projects I started over the past years but lost the energy to do them – because I was too wiped out from my day job to keep up with it all.

So, there is hope.

But for now, it’s time to go move some snow. We got a bunch of it overnight, and I need to shovel it before the temperatures start to rise. Heavy snow is no fun.

It’s easier if people aren’t nice to me

Man Thinking, Looking Out Over Foggy Harbor - Photo by Phoebe Dill on Unsplash
Photo by Phoebe Dill on Unsplash

This is going to sound strange, but it’s actually easier for me, when people aren’t nice to me.

When they don’t say and do nice things for me, befriending me, and so forth.

I find it confusing. And the reciprocity thing makes my head feel like it’s spinning.

And I’m going to get it wrong.

Either I’ll get too close, too fast, or I’ll keep my distance when I’m not supposed to.

They’ll expect me to hug them. And that’s no good. I’m a terrible hugger, objectively speaking. I don’t know how to get the right pressure, and I always seem to dig my chin into the other person’s shoulder, which is a weirdly intimate thing to do, when I think about it.

They will say things and expect me to respond in kind. But my brain doesn’t work at their same speed, so I’ll end up saying something stupid or coarse or reflexive that’s unconsciously meant to push them away.

It’s better, if people aren’t nice to me.

That’s not to say I don’t like people. I do! I really enjoy their company, and I like to spend time chatting about things that interest us. Even the dreaded small-talk is fun for me, at times. Banter. Witty banter. Laughs. Ha-ha-ha. ūüėÄ

But other than superficial fun times, I prefer that people are objective and a little cold towards me. Matter-of-fact. Because facts really matter a lot to me, and it’s more important for me to handle things in the correct manner, than it is for me to “exchange energies” with potentially needy others.

I don’t mind the chill. I prefer it, in fact.

Just don’t be rude.

Rudeness I cannot countenance. Standoffishness, yes. But rudeness, no.

And that’s what I have to say about that tonight.

What if non-#autistic “pretend play” is pathological?

board game with pieces
I’ve been thinking a fair amount about so-called “theory of mind” (ToM), lately, and I keep coming across references to it. Take, for example, the recent paper “Theory of Mind Deficit Is Associated with Pretend Play Performance, but Not Playfulness, in Children with Autism Spectrum Disorder” They talk about how “pretend play” is impaired in autistic kids (oh, sorry – “children with Autism Spectrum Disorder”), and how “ToM significantly predicted pretend¬†play variables”.

Well, okay. They ran the tests, they did the analysis, they made their findings. The paper says:

The results showed that children’s ToM was significantly associated with their pretend play in initiating play actions, object substitutions, property attribution, and pretending an imaginary object were present. However, the correlation coefficients failed to show a significant relationship between children’s ToM and their playfulness.

So, kids who did poorly on ToM didn’t “perform” pretend play very well.

From the paper (bold emphasis is mine, and I’ve taken out the citations):

Play, the main occupation of children, both reflects and improves the development of their physical, cognitive, and social skills. Play is the dynamic interaction between the individual child and the child’s immediate environment, and it is influenced by sociocultural factors. The two essential manifestations of play are external performance and internal experience. The former is observable performance, which unfolds in play activities; the latter is playfulness, which is the key to determining whether an activity belongs to play or not. Therefore, it is important to view play as a whole construct involving both external performance and internal experience.

Issues with this paper begin right from the start. First off, the idea that play is “the main occupation of children” seems flawed to me. And it seems to completely misunderstand the purpose of “play”. Kids aren’t just horsing around. They’re developing their inner systems, their senses, their reflexes, their relationship with the world. In my opinion, learning and development is the main occupation of children, and if it comes across as play, then great. But learning/development is not secondary to play, as the authors seem to believe. Quite the contrary — play is secondary to learning and development.

The paragraph then takes a turn for the better (sigh of relief) when the authors talk about how play has a dual nature — external and internal. It’s not just about how it looks to outsiders; it’s also about how you experience it yourself (the level of playfulness). And yeah, we need to consider both the internal and external sides of play, in order to assess it fully.

Pretend play is a form of external performance and is defined as play composed of both conventional imaginative play and symbolic play. Conventional imaginative play is preliminary pretend play. It refers to perceiving objects (or conventional toys) as real or small copies of things, and using them in a functionally proper way outside of the typical context. Examples are pretending to feed a doll using a toy spoon, using an empty cup to pretend to drink, or rolling a toy car on the floor and making engine noises. Symbolic play is sophisticated pretend play. It refers to using objects (or unstructured toys) as something else, attributing properties, or pretending an absent object is present. Examples are using a banana as a telephone, pretending a piece of cloth is wet, or making an imagined cup with the hands and pretending to drink. Therefore, pretend play provides an opportunity for children to practice events occurring in their daily lives or social worlds. Through engagement in pretend play, children learn the differences between reality and imagination. Moreover, pretend play reflects and facilitates the development of emotions, language, cognition, social skills, social awareness, and perspective-taking ability.

I’m sure there’s plenty of research substantiating the above, but I think there are a lot of conceptual leaps that hew to a typical line. And those leaps may be blinding the researchers to additional considerations.

Why is it so essential that children turn something into something it’s not, to show sophistication? Why is it assumed that children who substitute one thing for another are developing normally? Seems odd to me. Why wouldn’t they wonder if something was amiss with those kids, if they clearly can’t tell that what they’re holding is in fact not a telephone, but they keep trying to use it as one? And how is it heart-warming, for a child to not understand that their doll is inanimate, that it’s incapable of eating and drinking, so it’s pointless to try to feed it or give it a bottle? Maybe that’s standard-issue non-autistic childhood behavior, but it’s not the only kind of human behavior that bears fruit.

The bias becomes quickly clear. Pretend play appears to be the one and only precursor to normal development. So, one could say that if it’s absent, it’s logical to expect that “emotions, language, cognition,¬†social skills, social awareness, and perspective-taking¬†ability” would all be ultimately impaired. Ugh.

Pretend play deficit appears to be a clinical feature of children with ASD and has long been a focus of the study of child development. Previous studies have found that children with ASD are unable to understand the pretend actions in play. Wing, Gould, Yeates, and Brierly (1977) conducted the first research that directly examined pretend play in children with ASD and children with intellectual disability and found that the majority of children with no observable pretend play or those with stereotyped, copying pretend play behaviours were children with autistic disorder. Several studies have also found that pretend play is apparently less frequent in children with ASD, and that their play behaviours lack symbolism, creativity, and complexity. Rutherford et al. conducted a longitudinal study that measured children’s pretend play in a free play condition and a structured condition with external instructions. Their results showed that children with ASD found it significantly more difficult than typically developing children to perform pretend play in both conditions and that spontaneous pretend play was more impaired. Furthermore, in addition to difficulties in performing pretend play, children with ASD have impaired comprehension of pretend play as well. In summary, research has shown that children with ASD are unable to understand the pretend actions in play. Children with ASD have decreased frequency and complexity when performing pretend play, and the difficulties can present spontaneously or appear with external facilitations.

Oh, my. That’s chock full of bias, pathologizing, and outright cluelessness about what’s really going on beneath the surface of autistic play. It’s so full of … “incomplete understanding”… I’m not sure where to start.

There’s the deficit model approach. Talking about our differences as impairments. Citing research from 1977 (for heaven’s sake!), and not apparently asking any #ActuallyAutistic folks about why we played they way we did, when we were younger. Trust me, a lot of us remember. And we could shed a truckload of light and insight on this question of “Why do autistic kids play the way they do?”

I take issue with their assumption that autistic kids don’t understand pretend actions in play. What if — just what if — we actually did understand, but categorically rejected it, because we needed to play in a very different way? What if we’re just more interested in learning how the real world actually works, rather than fooling around with playthings that aren’t the real thing? There seems to be an assumption that children aren’t capable of that kind of reasoning, when we’re quite young.

But I remember clearly, so many times when I was young, being offered dolls and toys and other objects that were supposed to be played with a certain way, but consciously choosing¬†not to interact with them the way I was expected. Because I wanted to find out how they worked. I wanted to see how they were put together. I didn’t play with the pretend vacuum cleaner my aunt gave me one Christmas. I took it apart and played with the different pieces, to see how they operated, how they felt, how they took up space. I had no interest in any dolls other than one that looked exactly like a real baby and had a body made of fleshlike foam. I didn’t think of that doll as my child, though. I thought of it as a friend. Because clearly, I couldn’t have a child of my own. I was too young. I was closer in “age” to that baby, than I was to my mother. So, you do the math. It made no logical sense for me to pretend I was that “baby’s” mother.

So, when all these adults are sitting on the floor, trying to get autistic kids to do pretend play like the “normal” kids, they might ask themselves if it makes any logical sense for those kids to do what they’re asking them to do. And it might also help if they tossed in a bit of reality along with the pretend. I just don’t get why children are expected to concoct their own version of what’s real and what’s not, when the real, physical, tangible world is right there in front of them, just waiting to teach them about all the laws of physics.

What the paper clearly misses, is the possibility that rather than being a sign of impairment, autistic kids’ modes of play are simply a sign of difference. Where non-autistic kids may pretend more, say, using a banana as a telephone or pretending that a doll is a real baby or imagining that a toy car is a real vehicle that makes real sounds, autistic kids might — just might — have more of an interest in non-pretend (or¬†real) play.

What if autistic kids (who were shown in the study to be playful just like the non-autistic kids) simply have a different mode of play which emphasizes reality, which interacts with things as they are, rather than turning them into something else?

And what if that ability to actually play with the real properties of objects were essential to our development in learning to navigate the world around us and interact with our environments?

Looking even deeper, what if the researchers factored in sensory processing issues and rather than pathologizing their play styles, they realized that they actually served a purpose. To whit:

In this study, it was observed that children with ASD who had poor adaptation to change and more unique use of objects would exhibit play behaviours that were less changeable and lacked narrative. For example, the children might keep rolling the toy truck to watch the rotation of the wheels without any play purpose, and the children would also show resistance when asked to play with other objects or when the tester modelled the play actions.

Play, as many of us autistic folks know, can be “less changeable” for a whole host of reasons.

First, the situation might be overwhelming for the kid, which prompts them to stim, or find some repetitive motion that soothes their jangled nerves. Also, certain kinds of play might lead to a “flow state” which is blissfully consistent. Or the kid rolling the truck might be observing the rotation, seeing how it changes, based on the surface, sensing the vibrations of it, basically absorbing massive amounts of data about that seemingly simple scenario — all of which is invisible to the adult. What’s more, that adult might have had a childhood rich with pretend play, which got them in the habit of making stuff up in their mind that seemed to correlate with reality, but which was just the product of their undirected, uninformed imagination.

And if an adult comes along and interrupts your flow state,¬†disrupts your experiment, insisting that you do something different that isn’t contextually appropriate, how is that supposed to affect an autistic kid? It’s annoying. It can be ¬†hurtful. Why should we accommodate their non-contextual request to change what we’re perfectly fine with?

However, the results showed that ToM was not a significant predictor of children’s playfulness, possibly because of the small sample size. In addition, the results showed that autistic behaviour was the most significant predictor of children’s playfulness. It suggested that children with more autistic behaviours would look less joyful during play. As autistic behaviour encompasses the characteristics of ASD, the results are congruent with those of previous studies demonstrating that children’s playfulness is related to individual characteristics, such as age, sex, and other personality attributes.

So, stop with the pathologizing, already. And never mind the ToM stuff, period. I find it very telling that the researchers felt the need to say autistic kids “look less joyful during play”. How would they know what joyful looks like? Trust me, I can be ecstatic on the inside, and people around me think I’m pissed off. Seems the impairments of social detection aren’t only autistic.

After reading through this paper, I have to wonder, what if so-called pretend play were actually a sign of pathology, indicating that non-autistic children are prone to make up things ¬†in their minds which simply aren’t true… and if left unchecked, that can ultimately develop into full-blown inability to deal with reality as it is. What if children who were skilled at pretend play eventually grow into adults who surround themselves with invented falsehoods which confirm their biases and are never challenged, because they’re seen as “normal” behavior? Given the amount of autism research like this paper, it would appear that too many pretend-play experts have been allowed to persist in their childhood habits of making sh*t up, and it’s now affecting their adult work.

Hmmmm… I think someone should do some research on that. Now¬†that would be a paper I’d like to read.

We’re all autistic, we’re all family… what’s the problem?!

three figures with one close up

Ugh. My familial disillusionment strikes again. I had hoped so much to be able to connect with my parents, this holiday season. I won’t be traveling to them, so I’ve been hoping we could interact with each other in a mutually satisfying way. I’ve been cherishing the idea that the distance will relieve me of some of the existential angst that used to push me to suicidal ideation this time of year… every . single . year . until I was nearly 50.

Yeah, I know I’m being unrealistic. Everybody’s bothered by family stuff, almost without exception. I know very few people who don’t have issues with their parents, who don’t carry some sort of painful “baggage” about their relationship, who aren’t haunted by unaccountable ghosts that seem to embed themselves in our sinews and make themselves known like so much arthritis when the weather turns cold. And when you’re autistic, family stuff gets even more… interesting. I’m no exception.

So, I’m all spun up about sh*t. And what, pray tell, is it about?

This morning, my father finally responded about a piece of writing I’d sent to him a few weeks ago, to see what he thought of it. He’s seen my writing before, and he hasn’t always had favorable reactions. He’s misunderstood a lot of what I’ve written and said over the years, and he’s lectured me on all sorts of non-issues that he got all worked up about.

I chalk it up to his own Aspergers… that clinical tone he takes, the critical eye he turns to things… he seems to think he’s doing me a favor by telling me where I’ve gone wrong. He doesn’t actually discuss my overall ideas. He looks at specifics, homes in on the things that he thinks are flawed, and then he tells me in detail what those things are… usually from his own dogmatic point of view.

Yeah… thank you, Aspergers. That whole big-picture thing isn’t a strength of his. My mom isn’t much help, either. She also homes in on a narrow slice of something I’ve written, she takes it out of context, and then she gets upset. She’s much more emotional than he is, and she’s been so beaten down by the rampant sexism in her world, that she has a hard time articulating exactly what’s bothering her.

And then I have two of them all twisted up about my work, when all I really wanted to do was share it with them so we could discuss some of the ideas I’ve been thinking really hard about.¬†It’s generally a really tough situation for everyone, and I hate it every time it happens.

Part of their issue is that I don’t have a college degree. Both of my parents have Masters degrees, and my father used to teach at the college level. I’ve got a number of PhD-level academics/researchers in my family — some of them considerably younger than I — and the whole formal education thing is very big in my family. I still get little insinuating lectures from my parents about how inexplicable it is, that I never got my degree. I attended university for four years. I accumulated the debt. I did my time. But no degree. That just rankles them to no end… probably in no small part because of their Aspergers.

What they can’t seem to get their heads around is that my “issues” were severe and cumulative in college… to the point where I had a serious drinking problem, I was in trouble with the law, I’d “acquired” a stalker, and I literally couldn’t complete my coursework in a timely manner, so completing the whole gauntlet just wasn’t possible. They’ve always felt it was my fault. I just didn’t do a good job of… anything. I’ve embarrassed them. And what right do I have to write anything that sounds like I know what I’m talking about, when I’m clearly such a loser?

So, when I’m presumptuous enough as to write something for others’ consumption (they don’t know about this blog), they get all up in arms. Because they think the things I write about require years and years of study at accredited universities, to qualify to speak about them. If I haven’t done the coursework, I can’t use my voice. I’m not qualified. I’m not vetted. I’m just some upstart making noise. And I’m making noise in ways that might embarrass them, if other people find out. I’m making noise that embarrasses them simply by right of me making that noise. It has no order for them. It has no sense. Because I haven’t ticked all the boxes that tell the world I’m allowed to say the things I say.

And for this very reason, I am incredibly grateful that I’m not traveling to see them for Christmas. We were going to try to travel down, but… nah. It’s winter. Officially. There’s snow on the ground and too much traffic on the roads. Better to stick close to home, and just settle in with my books.

My comfort.

 

On my terms.

In my own way.

That’s not “wrong” at all.

Not by a long shot.

What a delightful week it’s been! Blissfully quiet

And I’m pretty wiped out. I’ve had most of the past week to just do the things I like to do, in the way I like to do them. Which means, a lot of sitting. And a lot of isolating. And a lot of reading and writing and researching and pulling out textbooks, thumbing through them and crying, “Ah-ha!” when I find the passage(s) I’m looking for.

I’ve been immersed in a certain mode of thought I don’t have the luxury for, in my regular everyday working life — where my co-workers are suburban parents who just want to make enough money to put their kids through school and/or climb high enough on the corporate ladder where they can vex more people than those who vex them.

It’s been so much fun, being away from that whole scene, that major drain of a scene. And while I do look forward to getting back to my routine, I don’t look forward to dealing with those people again. It’s been a real pleasure, not having to constantly come to terms with the mixture of sadness, pity, compassion, frustration, and intermittent admiration, that I cycle through each day.

But I have to say, I am pretty tired.

It takes a lot out of me, trying to catch up with myself and the kind of life I want to lead, when I have such limited opportunity. It kind of works against me. Except, it’s my choice, and I can do what I please. And in the end, I’ve got a lot of satisfaction out of the whole deal.

Tomorrow I head back into the jungle.

Wish me luck.