What to do when you've got no spoons left

... or tokens, or whatever your terminology of choice is for that point at which you have no more energy, no more strength, no more coping-ness, to deal with one more damn thing.

source

I find myself here more often than I'd like to admit, because I'm not so great at identifying exhaustion, overstimulation, and general burnout until I'm already at the point where EVERYTHING needs to STOP AT ONCE.  It's a combination of getting engrossed in things and losing track of time, of a sense of duty that keeps me working when I should stop, and generally wobbly self-care skills.

So, what to do when you're spoonless?

These are some things that work for me.  They won't work for everyone, and no doubt there are some good ones that I haven't stumbled across.  I'd really like to hear yours as well... points to comments box

• A hot shower (not bath)
• A cup of tea (by myself - this is about the tea itself, not socialising)
• Sleep!  Either a full night's sleep or a nap, depending on the circumstances.
• Losing myself in a favourite activity - reading, sorting buttons, watching one of my favourite shows.  A timer can help if I'm worried about losing track of time and staying up too late, eating into my much-needed sleeping time
• Doing something simple but constructive (shredding some paper for the recycling, for instance) so that I feel like I have some modicum of control over some part of my life, at least
• Time out.  Just doing nothing.  Sitting.  Stimming.  Daydreaming.  

It's not 'being lost in my own world', about wanting to get out of work or deliberately skiving on my responsibilities.  It's essential downtime when I can do no more, it's the emergency shut-down before I either collapse in a weepy heap or get ragey.  When I'm at this point, unless I specifically ask for help with something, the best thing to do really is to leave me alone to recover.

The Tower: further (and further and further) education

Wondering what this series is about?  Start here

For all that I didn't like the specifics of school - the enforced sport, the bullying, the pointless busywork, the endless repetition of the same material, the polishing of church pews, some of the other kids and a few of the teachers as well - I quite liked the idea of school.  I was good at learning.  I got good marks, for the most part.  This was a very important self esteem booster in a big, bad, scary world that seemed determined to crush my spirit in as many ways as possible; I couldn't play sport, ride a bike, make friends, apply makeup, draw, paint, sing, flirt, dance, talk to people, or any of the other things girls were supposed to be able to do, but I got good marks.  I read a lot.  I was clever.  That was my thing.

Unfortunately, there are two downsides to having Being Clever as the hook from which you hang your identity.

The first is that clever is a relative term. I did very well at primary school because the school I went to was a little bit crap.  We did a lot of hymns, polishing of the aforementioned church pews, and copying things verbatim off the blackboard, but the only science project we ever did was when a teacher found a dead rainbow lorikeet on the ground and got us to go out every day to watch it rot; an experiment which came to an abrupt end when a passing dog ate it.

But at high school, where there were a lot more students and the law of averages said some of them were going to be smarter than me, and where the work was suddenly much more advanced and complicated, it was suddenly a lot harder to be clever.  But I didn't switch to easier subjects - even though it would have massively reduced my stress levels and the number of homework-related meltdowns - because I Was Clever, so I had something to prove.

That's the other problem with Clever being a core part of your identity.  If you're suddenly not Clever - because the work gets harder, because the skills you have are suddenly not relevant to the problems you're facing, because you're thrust into a world where problems can't be solved with long division and analysis of Shakespeare - suddenly a big chunk of your identity has been taken away.  Not only are you struggling, you're a failure.  Who even are you, if the only thing you have going for you is suddenly gone?

Fortunately my catastrophic final results in physics didn't amount to much in the real world, because by then I'd given up on dreams of being an astronomer, and slid into an arts course at uni.  I was back in my element - I was Clever again.  My ability to wheel out big words and echolalic recall of the kinds of phrases and terms my lecturers used enabled me to sail through quite comfortably despite the occasional complete misunderstanding of the actual assignment.  I loved uni.  I could have stayed there forever.

And here's the thing - I really could have stayed there forever.  I could easily have continued into postgraduate study and stayed in the hallowed halls of academia forever, learning a great deal about a great many dead poets and then inflicting my learning on the next generation of literature students.  It would have been a much safer course than the one I took, into the uncertainty and chaos of journalism.

But while it would have been safer, I'm glad I didn't choose that path.  I've learned so very much though my adventures in the big wild world outside academia, and met so many people I wouldn't have in a uni setting.  It also provided the opportunity to be diagnosed, which I'm not sure would have come my way otherwise.  I feel I've grown more as a person - as clichéd as that sounds - than I would have done had I taken the safer option.

For autistic people with an intellectual inclination, academia may be a safe and orderly refuge in a hostile and bewildering world.  For those who function well in such an environment, I can see the strict rules, hierarchy and structure of academic life holding a very real appeal.  In fact, I haven't entirely ruled out going back for further study one day.

But not just yet.  Because there are many adventures to be had in the wider world as well.

Image: Pembroke College, Cambridge, from the Cornell University Library collection on Flickr Commons

Monday Muster

Happy Monday, comrades.  Have a pretty vintage landscape:

source

 Joel Deane has written a scathing open letter to the high school that acted like a hatful of adders when he spoke to them about enrolling his daughter.  Joel's daughter has Down syndrome, and there are many stories in the article comments from the families of autistic children who've faced similar discrimination from schools.

Neurodivergent K from Radical Neurodivergence Speaking has an insightful piece about how insulting it is to use cancer as an analogy for autism - to both autistic people and cancer patients.  Here's a comment from someone with firsthand experience of both:

"I have (had) cancer and aspergers. The cancer was way worse to deal with. Also, while I would never want to be non autistic, I would love to have not had cancer. I am now missing my thyroid because of the cancer. I have to take daily medication for it that means I can never afford to be uninsured. There is no way these two things are remotely similar."

Another great post from an autistic blogger this week, To You, The Children by Alyssa from Yes, That Too.  Check it out.

Happy Mothers Day: on having an autistic parent

 My Mum is awesome.

 

pictured: awesome motherhood

Mum doesn't have any sort of diagnosis - she grew up long before there were such things.  But she has officially diagnosed family members, and sees a lot of the traits in herself, and we understand each other well.  Now that I'm over my big bundle of teenage hormones and young-adult angst, we get on magnificently.

She's always accepted me as I am and never saw me as 'broken' or in need of fixing or changing.  I'm her only child, but I've never been made to feel she'd like to trade me in on a better model. She understands the troubles I have socially and motor-skills wise, and never made me feel it was my fault.  She can sympathise.

When I was a kid she encouraged (or tolerated, at least) my special interests rather than trying to redirect me into whatever was popular with other girls my age.  She also understood that some clothing is sensory-hostile and let me choose my own clothes and dress myself, even if that meant something unfashionable that didn't make me look as pretty as all the other little girls.  I grew up when the whole "being a girl means wearing pink frilly stuff and wanting to be a princess" movement was just beginning to become the monstrosity it is now, and between my super short hairstyle and preference for dark, soft T-shirts and jeans over anything pink and frou-frou, I was regularly mistaken for a boy.  And Mum didn't freak out about that.

Mum also respected me as a person first and her child second.  When I did have meltdowns, draw on the walls, break things, run away in shops and all the other things I don't remember doing but I'm sure I did, she dealt with it quietly, person to person.  She didn't bitch about what a burden I was, or take pictures of it and put them on the internet to shame me for eternity.

Because Mum grew up much as I did, bullied and ostracised and never fitting in and not knowing why, she can sometimes have a fairly bleak view of the world and people like us having any sort of place in it.  In her experience, a lot of people were horrible and that was just life.  Rather than trying to find the good ones, a long and often fruitless search involving a lot of rejection along the way, it was easier to just cope with the hostile environment as well as you could for as long as you were obliged to, and then escape as soon as possible.

And as defeatist as that sounds, it worked.  Of the options available to us, it was the one that kept us sane and with some degree of self respect in the face of a world that wasn't set up with our needs in mind.  I think the "I'm not OK, but you're not OK either" mindset was actually healthier than assuming we were just wrong and broken and everything that went wrong or ended badly was our fault.

These days, things are much improved.  There's a lot more awareness.  This way of being has a name and recognition attached to it, it's known to be A Thing and not our fault.  Society's a bit more civilised, too - bullying and abuse of students by teachers is no longer acceptable in schools as it was in Mum's day, for instance, and I like to think if I were a schoolchild today someone would actually notice I had a developmental delay.

However, there's still a long way left to go.  Services for adults on the spectrum are mighty light on the ground.  Cognitive disabilities are lagging badly in the fight for respect and acceptance - just look how common "retard" is as an insult.  You can try to argue that people who use that term aren't talking about actual people with cognitive issues, but the point remains that it's only an insult because having mental, neurological or intellectual issues is considered a crap, substandard, inferior way to be.

It isn't.  And I know it isn't.  And that self belief is the greatest gift my mother's given me.

I can't eat that! Autism, sensory sensitivity and food

source

Sensory disregulation can take any form: some people struggle with light or sound.  For some it's smells, or heat, or cold. The tactile sense of clothing or water on skin does for others.  Some can't stand light touch, others can only bear the lightest of touches.  Most autistic people have some sort combination of multiple sensory triggers.

When I was musing about my weight last week, I mentioned that I have trouble with sensory sensitivity in relation to food.  It's become less severe as I've got older, but there are some foods I just can't handle at all.  Sadly it tends to be the healthiest foods - raw fruit and vegetables - that cause the most trouble, while artery-clogging deep fried carbohydrates generally go down OK.

Every person with sensory issues will have their own unique triggers, but these are mine:

Bitterness: A lot of fresh fruit, things like berries and stonefruit in particular, taste really bitter to me.  Even when other people are commenting on how sweet this season's apricots are, I'll be screwing my face up like I've just had a vinegar mouthwash and surreptitiously looking for somewhere to spit.  I wonder if I'm more sensitive to whatever compound in fruit gives it a bitter taste?  I think it may actually be a self-preservation thing on my body's part, because if I do manage to get down a normal-sized serving of the sort of fruit that triggers that reaction - in a smoothie with honey or sugar, for instance - it plays havoc with my digestion on the way through.

Whatever it is that causes this is destroyed by cooking, because I can eat cooked fruit quite comfortably and without stomachular upheaval.  It works if it's just been poached in water, without sugar or anything else to change the taste, so it seems to be the heat itself that cures the problem.

Slimy texture and off smell: Fruit chunks in yoghurt is the classic culprit here.  Fruit or veg that's been preserved in liquid sometimes takes on a slimy texture and a smell that's really, really offputting.  It doesn't affect everything - beetroot pickled in vinegar is perfectly palatable, and dried tomato in oil - but the things that are affected genuinely do taste like they're rotten.  There's no "oh, this tastes bad, I'll spit it out" thought process at work; it's a genuine, instinctive gag reflex, the same as if you had put something genuinely decomposing in your mouth.

A blender is a great help with this one.  Fruit yoghurt can be blended smooth, and the offending taste and texture disappears once the fruit is no longer in lumps.  The resulting yoghurt does tend to be rather thin though, so it appears I accidentally invented drinking yoghurt.  Similarly I accidentally invented tapenade by blending up a bottle of olives and other antipasto things in oil which wasn't quite right.  It was quite nice blended to a rough paste and spread on toast.

Fibrous stuff: The only thing I can think of off the top of my head for this category is citrus fruit, but I'm sure there are more.  I actually quite like oranges and mandarins, but I find their texture really hard to swallow.   It's got this weird thing going on where no matter how thoroughly I chew it, it feels like it's not sufficiently processed to go down.  Like the off-tasting pickled stuff, it's not a conscious "I don't like this", but an instinctive reaction.  My body's apparently decided that the orange fibre's going to choke me if I swallow it, so it just refuses.  Fortunately orange juice doesn't cause problems, even if it has pulp.

Fresh tomato: gets its own heading because I just don't know what its problem is.  Tomato sauce? Fine. Paste? Fine. Soup? Fine. Dried in olive oil? Fine.  But fresh, in slices on a hamburger or kebab?  No way on Gods' green earth.  It somehow manages to trigger the bitterness, slimy texture AND fibre issues, all while looking completely innocent and inoffensive.  I can only assume tomatoes have it out for me unless they've been boiled, mashed, dried, blended or otherwise pulverised into submission.

Image: Homesteader feeding his daughter, from the US Library of Congress collection on Flickr Commons