Ugh. Spring.

flower growing out of a bookYeah, I’m supposed to be elated that spring is here. I’m not going to capitalize it, because — much as it’s the convention, and being a formal season name and all — I don’t want to give it the “power”.

I’m supposed to be elated, but I’m not. If anything, I’m irritated.

Pollen is coating my car. That’s not good.

I get “gummed up” and mucus-laden.

Everybody’s running around like feral chickens with all this kinetic energy.

The days are (thankfully) not as long as they eventually will be, but they’re longer than I like. I need a better balance between night and day — preferably with a little more night than day. Longer days are a significant adjustment for me, and by the autumn, I’m pretty well worn out with my circadian rhythm skewed towards daylight.

If I had my d’ruthers, it would stay April forever – not because of Autism Awareness Month (heaven help us), but because the length of days and the temperatures and the precipitation are just about right for me.

But I don’t get my d’ruthers in this case, so I guess I’ll just need to be an adult about it.

Anyway, this is all just me being cranky about seasonal changes. Me being brittle about my life. Things have been busy, lately, and I’m feeling pressed and hectic, and I’m off my schedule, so that’s no fun.

I just have to remember that change is a constant, that I’ve dealt with this transition many times before in my life, and as challenging as it is now, I’ll adjust to it and move along.

Until the next big change, of course.

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How I get #autistic accommodations (in White America)

Thumbs up, thumbs down

Updateautistsix just raised an excellent point that this situation could be cultural. And I agree. It is cultural. It’s White All-American, not All-American in general. Let me fix that in the text below.

Woo hoo! I just checked my Social Security statement, and it looks like I won’t necessarily be destitute when I get to my 70s. Now, this is assuming there actually IS a U.S. Social Security Administration and money – which is not a safe assumption, these days.

But I’m pretending that all the money they’ve removed from me over the years is going to be there when I need it. Let’s just pretend. For the sake of taking the pressure off.

But enough about that. I want to share a little thing I learned about how to get accommodations for autistic myself, when things are rough with me.

I can get pretty marginal at times — intense pain, off-balance, terrible sense of where I am in space, slow processing and reaction, a sharp temper that explodes out of nowhere, highly sensitive to light and sound and touch.

Times like those, I need to get accommodations and relieve some of the environmental pressures that are making everything worse.

The problem is, I can’t actually ask for them.

When I tell White All-American people I’m having trouble — even with my spouse — they get defensive and frightened. Something about my vulnerability triggers them big-time, and they not only start getting antsy, but they treat me like I’m less intelligent, less with-it, less capable, overall. As though an upward spike in my needs turns their world upside-down.

I’ll spare you my rant about how immature and “snowflake-y” that reaction is. That’s just how things turn out, at times. Especially with White Americans, who seem to have this zealous, almost religious devotion to the myth of self-sufficiency and fierce independence. Don’t get me wrong, I’m White, too, and I am fiercely independent. I’m most comfortable being self-sufficient. But everybody needs a little help, every now and then. And that includes me.

What to do?

Well, I just turn the tables, and rather than being a victim in need of assistance, I position myself as the master of my own situation, who’s managing my life pro-actively and being positive and masterful and ever-so-in-control, so I can “knock it out of the park”. As much as I hate sports analogies when it comes to living my life, and I detest using action verbs to describe a relatively blah, ordinary activity (like saying “jump on a call” for making a phone call)… well, that’s the vernacular of my environment, so I guess I’ll defer to the conventions.

White Americans seem to respond best to pro-active and positive spins on things that make me look like I’m “on top of things”. (I hate that expression, too, by the way — it messes with my literal mind — but I’ll use it nonetheless… vernacular and all.)

Here are some examples that work really well for me:

  • Rather than saying, “Oh, ouch! That sun is so bright and hurts my eyes!”, I put on my sunglasses and strike a pose with my back to the sun.
  • Rather than shrinking away from others when they reach out to touch me, I take the initiative and make contact with them first, before they can get to me.
  • Rather than asking for shorter working hours at the office, I schedule calls first thing in the morning, so I have to take them at home — or I block off time at home to work on things that don’t require me to be in the office — and I organize my daily schedule around my own needs.
  • Rather than dreading being interrupted and startled by someone talking to me when I’m not ready, I get pro-active and address others before they talk to me. If I get ahead of it, I set the stage for the interaction, for the exchange. And I get to set the tone of the conversation, which All-American neurotypicals just love. They love to have something to react to, so I give them that. I “run” the conversation, so they get to be part of a social interaction — and I do it in a way that lets them be successful. Oh, how they love following a leader — so I play that role, and they really respond well. I don’t always get what they’re saying in response to what I say, and our exchanges don’t always make any sense to me at all(!), but at least I can complete the interaction successfully.
  • Rather than telling people about how exhausted I am, how I can’t think straight, and I’m in intense pain, and I just need to collapse in bed in a completely dark window, I tell them I’m prepping for a big day tomorrow, and I’m going to get some extra sleep so I’m at my absolute best. Nobody needs to know how vulnerable and absolutely beset I am by everything. If they do find out, they get way too nervous for my comfort. They don’t know what to do. Ahem… Uh… Ahh… Er… So, I spare us both the awkward situation and spin it in a different direction that makes me look good.

When I actively reframe my vulnerabilities as points to pro-actively manage (with the illusion of CONTROL), and I assertively do just that — manage them — it puts me in a positive light and it also sets me up as the kind of person that others can depend on. I set the tone of the situation, which White All-American neurotypicals respect. And I get to dictate the terms of my demands.

Don’t get me wrong – I have no problem with my vulnerabilities. They don’t embarrass me. They don’t horrify me. They are what they are — weaknesses, deficits, vulnerabilities. But I’ve learned from a lifetime of hassling with clueless people who spook easily, that I can get accommodations much more easily and more effectively, if I frame them as demands I’m making in order to operate at peak level, rather than just making do to barely get by.

And there we have it.

Not “Splinter-functioning” — “Spike and Trough Functioning”

graph showing line that spikes and troughs across the "normal" mid-line
This would be a chart of any one of my abilities… on an average day / week / month. Even from moment to moment.

I misspoke earlier about the name I’d like to give my particular sort of functioning. I’d called it “Splinter-Functioning“, but that’s not right. It’s “Trough and Spike Functioning”.

Because one day/moment/hour I can be high above normal in some ways, and the next, I can come crashing down.

And when I say “crashing”, I mean crashing.

I think Spike/Trough works better.

“High-functioning” or “Splinter-functioning”?

graph showing line that spikes and troughs across the "normal" mid-line
This would be a chart of any one of my abilities… on an average day / week / month. Even from moment to moment.

Like many folks on the autism spectrum, I have real problems with the expression “high-functioning autism”. On any given day, I can be doing extraordinarily well in some regards, and downright pitiful in others. That doesn’t mean those abilities are static and/or will be the same over the long term. It’s just that it’s all very variable, and where I might be “doing well” in one situation, my capabilities will bottom out in a different one — even just a slightly different one.

That’s what makes this all so magical.

My recommendation is that rather than being labeled “high-functioning”, those of us who have the ability to do super-wonderful at certain times, are considered “splinter-functioning”, with the understanding that as glorious as we may be doing in one moment, that’s no guarantee we’ll be aces the next.

Just an idea…

 

 

 

The incalculable cost of denying #autisticwomen an #autism #diagnosis

Image showing six pictures of women who are blurred out and not clearly visible
Image showing six pictures of women who are blurred out and not clearly visible

I’m sorting through my autism materials collection I gathered back in 2008, when I was re-commencing my quest for autistic understanding. I’ve got a bunch of PDFs from people who were at the vanguard, back then. And I’ve got a bunch of information from now-infamous pioneers whose work has been used to hold us back and justify all sorts of things, including beatings and electric shocks.

I’m glad I’ve got a wider perspective, now. Frankly, not being able to find reliable sources of info on autism, eight years ago, was one of the things that drove me back underground, to sort things out myself.

And I’ve done pretty well. I’ve actually done really well, as I got help from someone with deep expertise in executive functioning issues, who worked with me on a weekly basis to talk through my life and figure out how to A) not beat myself up over every little thing I thought I did “wrong”, and B) think through my choices and actions, so I didn’t get myself in trouble quite as much.

It was hugely helpful to me. Of course, the professional I worked with flat-out denied that I might be on the autistic spectrum. He trotted out that Simon Baron-Cohen story about theory of mind, and he state in no uncertain terms that if I could imagine what it’s like to be someone else, in their shoes, and have empathy for them, it was impossible for me to be autistic. Or even aspergian.

The net result was this:

  1. I felt let down, betrayed, dismissed, diminished.  I had worked so hard to understand myself and my situation and actually be honest about my experience, and here was someone who wouldn’t even hear me out, because he wasn’t current on his research. It put a damper on our working relationship for a bit, and it made me feel crazy. I also was more emotionally raw, and as I recall, I had some meltdown instances.
  2. That blind spot actually set me back, in some ways.  In terms of self-confidence, it pulled the rug out from under me. The meltdowns undermined my sense of self, too, and I started to think maybe I was crazy… again. Here, I’d had such a rush of excitement over finding a massive missing piece to my life, and it turned out, the doc thought I was wrong. He was the doctor, I was the patient. Who was I to question him? Maybe I was just another crazy middle-aged woman who read too much online, had too much time on her hands, was lonely, and was looking for attention from a professional. My blind trust was shown – yet again – as the shortcoming it’s always been. I felt like such an idiot, for a while.
  3. I eventually came around and realized that he didn’t know what the %#&!@  he was talking about. I mean, really. How could he sit across from me, hearing about all the challenges I was having, which were clearly — clearly — part and parcel of the autism spectrum for women, and tell me I had no basis for believing I was autistic? Logic ultimately won out. He wasn’t current on the research, and the “facts” he’d cited to shoot me down were exactly the ones I knew were wrong, so very wrong. I realized — logically, methodically — that he was the problem, not me.
  4. I worked on my autism issues with him, anyway. I never came right out and discussed my challenges as part of a larger context, a larger pattern, but I focused on them individually. Distractions. Temper outbursts. Poor decision-making. Impulse control. Getting overwhelmed. My sh*tty self-image. Basically, all the autistic issues I was dealing with, I brought to our sessions, and we worked on them, without ever addressing them in terms of autism. And I made good progress. However…
  5. There was a huge missed opportunity to improve even further. I had a lot of sensory issues that I needed advice for, but never got. I had a lot of internal experiences I could not adequately describe or articulate, and someone with deep knowledge of autistic women would have understood — and not told me that I was being unreasonable, and that I was doing much better than I felt I was. It helped me when he challenged my assumptions and rigid black-and-white / binary thinking, but there was a big piece of knowledge missing from our discussions — the knowledge of my autisticality and understanding how that affected my experiences and shaped my mind, heart, and soul.

I’ve since moved on to another executive function coach, and she’s a sweet woman, who is apparently as oblivious to women on the autistic spectrum as my old coach was. In fact, they still consult with each other. That’s an issue I’ll discuss later.

The point of this post is really to call out the ways that denying an autism diagnosis to women actually hurts us — and everyone around us. Why we should be refused diagnosis, is beyond me. I think it may have to do with the Freudian roots of psychoanalysis being tied up with women being “hysterical” and sexually needy, and not really having problems that weren’t in their own heads… since “the talking cure” seemed to help them so much.

That attitude is still so prevalent in the therapeutic context, and it has real consequences. I can always detect it in the ways that mental health professionals (even my friends who are in the field) interact with me.  It’s almost as though women aren’t seen as viable entities outside the context of their sexuality and physiology. Like we’re secondary vessels and vehicles whose sole purposes is to let the rest of the world get what it needs, while our own identities and ambitions are shoved aside.

It’s like we’re not real people. With real roles to play in the world. Why would we need an autism diagnosis? Especially if nobody else can tell we have problems? If our quality of life and personal happiness is supposed to be derived from what the rest of the world gets from us, then as long as we’re functioning “normally” in the eyes of everyone else, and we’re giving the world what it wants, there’s no problem.

No problem at all.

Except there is.

There are huge problems. For us. And by extension for everyone else. Because although women do NOT necessarily rely on the rest of the world to prove our worth, the rest of the world DOES depend on us to keep spinning as it does. The rest of world draws from our strengths, our support, our involvement, our care, our commitment, and so much more. The rest of the world needs us to be as strong as we can be, just as much as we need it, ourselves.

And if we’re being undermined by a condition which we cannot fully recognize or understand, that can suck the life out of you. Being blocked from simply stating out loud I am an autistic woman, and these are the issues I need to manage… being cut off from resources and support by supposedly well-meaning skeptics who are invested in us being neurotypical… being denigrated and diminished with the implication that we’re over-reacting and/or just looking for attention… It’s a killer. And it’s been killing us ever since we were little autie girls, doing our best to stay upright in a world that was usually too fast, too loud, too bright, too much of everything that hurt us, and not nearly enough like what we needed.

By extension, that suffering also sucks the life out of everyone around you. I should know. I grew up around plenty of women with very clear autism-related issues, who never, ever got the extra assistance they needed outside the close confines of their tight-knit community. It took a toll on the children they raised, the spouses they married, the employers who put them to work. I could tell stories for days about what I saw my aunt, my mother, and all the other women around me go through… simply because they weren’t neurotypical. It affected us all. It still does.

I’m drifting into territory I wanted to avoid — making autistic women’s well-being and access to diagnosis into primarily a community affair. To my mind, it should be enough that we need help for ourselves. But we are so interconnected, indivisible from the world around us, and invariably, I feel compelled to point out how others will benefit from it… to make a case to sway people (mainly men) on the fence, who have to see how something benefits them, in order to put support behind it.

I’m sure that many neurotypical mental health providers in a position to diagnose autism actually believe that they are doing us a favor by steering us away from an autism diagnosis. But that’s just prolonging the agony. If we don’t have a conceptual framework within which to place our issues, it’s difficult to even think about them. If we don’t have a pattern to orient ourselves to, it’s a challenge to even start thinking about things.  Autistic people are pattern thinkers. So, if you deny us access to a pattern, you deny us access to something that can help us actually think logically through our situation and take appropriate steps.

And that’s simply not fair. It’s borderline cruel. It’s ignorant, and it’s costing everyone else as much as it’s costing us.

So, why persist with this neglect? Loosen up, people. Let us have the reins of our lives, already. At the very least, stop trying to prevent us from being everything that we can be.

 

RAADS-R Retest – where am I on the Autistic Spectrum today?

RAADS-R-resultsThe RAADS-R is the The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R), which as I understand it, is one of the more clinically recognized tests for folks on the Autistic Spectrum.

I’m one of those people who likes taking these kinds of tests, because it gives me quantitative data — however limited it may be — to orient myself in the world. One thing I really like about the RAADS-R is that it factors in how things were when you were young, how things are now, and if there’s been consistency between your early years and your present (assumedly adult) life.

The one place where it falls down for me, is that it doesn’t measure the intensity or impact of the issues it tracks. That would be very useful for me to have, and it’s one thing I’m incorporating into the ASC (Autism Spectrum Condition – I like saying that better than “disorder”) profile builder that I’m working on.

I’ve got the first part of the three-part survey done, in terms of content selection. And I’ll be building out the first spreadsheet for it. And yes, I’ll be accounting for things in childhood, youth, adulthood, and later years. AND I’ll be accounting for intensity and impact – more on that later.

Anyway, I’m taking the RAADS-R test again, just to warm up for the day. Because it’s fun for me. And I also want to see how autistic I’m feeling today. It comes and goes, and it changes. And that’s another issue around ASC testing — we have our own internal spectrums, and as it’s pointed out in the Inclusive autistic traits list at autisticality, there’s variation to our experience and presentation. Like so:

Variation

  1. Variation of traits.
    • A. Long-term variation.
      • May change throughout development from childhood to adulthood.
      • May change over years during adulthood.
    • B. Environment.
      • May be more sensitive to overload when already stressed, ill, or tired.
      • May use different social behaviour depending on social situation.
  2. Variation of presentation.
    • A. Conscious variation.
      • May deliberately mask traits in certain situations.
      • May use learned rules to replace instincts.
    • B. Unconscious variation.
      • May have learned masking behaviour from early childhood.
      • May have trauma or mental illness which affects presentation of traits.

See the whole list here – it’s a good one!

Anyway, I just took the test again, and I’m a bit more autistic today, than I was about a month ago.

Image description: Screenshot of my RAADS-R results showing Language, Social relatedness, Sensory/motor, and Circumscribed interests for both May and June. My scores are slightly higher for today. Overall, I am above the autistic spectrum threshold
Image description: Screenshot of my RAADS-R results showing Language, Social relatedness, Sensory/motor, and Circumscribed interests for both May and June. My scores are slightly higher for today. Overall, I am above the autistic spectrum threshold

So, there it is… my Sunday morning foray into RAADS-R.

Taking the test again, I can think of a number of ways I’d rephrase the questions, or ways I’d qualify them. But it doesn’t offer that much granularity.

In any case, I think it’s a useful exercise, helping me better understand myself, my issues, and reminding me — yet again — that there are certain things I need to actively manage and also factor into my daily life.

So, that’s useful.

 

 

2. Into the Day – Part 4

When my coffee is all prepared and ready to drink, I carry my mugs and oatmeal into the dining room and sit down at the table with my breakfast and my log book, my daily journal. I keep a daily journal of things I need to get done that day, things I did the day before, and other notes that seem important to me. I’m not sure how much I can actually write, today. This morning feels like more of a challenge than usual. Everything feels like it’s going in slow motion. I have a muddled sense of unreality… I cannot hear very well, and I cannot thought clearly.

Willing myself to be present, I set down the mugs and bowl of oatmeal to my right, on top of a napkin so they don’t accidentally dampen the place mat underneath them, and I pull out my notebook. I always use the exact same kind of notebook – 3-hole punched, spiral bound, college-ruled 8×10” – and I usually use the same pen – a good, solid clickable ballpoint pen that takes refills. I relish the familiar feel of the weight in my hand, which balances me and soothes me. Writing by hand is tremendously comforting to me, too. There’s something about the movement of the pen, the sensation of its tip moving across the paper, and the stillness of it, that soothes me. I’ve been writing like this for decades, and it’s long since become an regular aspect of my self-care.

Keeping a journal is a part of my daily ritual that’s emotionally very important to me and is an integral part of my practical life for more than 25 years. I have been keeping a journal on a daily basis for all my adult life; I started keeping one (irregularly) in my teen years, but then my writing became more important – almost compulsive, in some ways. I have many, many notebooks filled with my thoughts, feelings, and experiences that I recorded during the course of my life. My journal-keeping for most of my life is involved with keeping track of my internal world, my exclusively internal experience, to ease the pressure of daily living and to soothe the agitation that I felt. But since the end of 2007, I’ve been logging my external experiences in order to see what is really going on in the world around me. I need to track the outside world things that happen to me, and track things that I do in response – things that I say, things that I experience, which turn out to be poor choices or get me in trouble.

When I keep track of my external experiences I sometimes find it difficult to put into words what actually happened and I sometimes have to think very hard to remember the exact course of events the prior day. Some days, I will write down what I think is the beginning of what happened. But then I’ll remember that there were several events that happened immediately prior to that. I often start in the middle and work back towards the beginning and then have to work forward toward the end. But the place where my memory kicks in, the place where I start to think, is often in the middle of the progression of events. So I end up going in opposite directions at the same time and it can get me turned around. Sometimes I get so turned around that I get lost in what I’m writing and today is no exception.

Today I have gotten lost. I have lost track of time.

I look up at the clock and I see I’m about 20 minutes behind my planned schedule.

I am falling behind.

I finish my notes quickly and put away my notebook till tomorrow. Then I carefully take my one empty coffee mug and empty oatmeal bowl into the kitchen, rinse them out, dry my hands thoroughly, let the younger cat out of the laundry room, and take my remaining half-full mug of coffee upstairs with me to drink after I take my shower. I move stiffly and robotically, pivoting on my toes as I move. My motions are stiff and jerky, and I’m not feeling at all coordinated this morning.

I move painfully slowly up the stairs, hanging onto the railing and putting one foot carefully in front of the other. Irritation wells up in me, but I press on.

2. Into the Day – Part 3

After I feed the cats, I turn my attention to my coffee. I set up my two coffee mugs with my one-cup drip filter. I always use the same two mugs every morning; they’re my favorite mugs, for sentimental reasons. The smaller of the two I’ve had with me since college. It was one of the first things that I actually bought for myself because I wanted to buy it, when I first started college in 1983. I’ve used it regularly for over 25 years.

The other mug is a larger one that I got one Christmas from my partner’s family. It’s light blue with a line drawing of a local mountain range on it, and it reminds me of the connection that I have with my in-laws, who have been very accepting and loving and inclusive of me for all 20 years my partner and I have been together. When I first met them, I was extremely withdrawn and shy and reluctant to interact with them, I felt extremely out of place – and I was. We’re from very different regions, and the ways in which we view and interact with the world are fundamentally very different, even without my individual issues. I wasn’t anything like any of them, and I felt like a weird outsider.

Now, within the circle of my own blood relations, the way I behave is not always perceived as very strange. My whole family shares many, if not most, of my idiosyncratic traits (I inherited a lot of them, after all), so my behavior is not always perceived as abnormal. Admittedly, the way I act can be a little extreme and quirkier than the rest of my kin, and it gets even more problematic when I’m stressed, but the rest of my family (and the world they live in) is so similar to me, they didn’t seem to perceive any glaring problems. At least, they rarely made an huge issue of it, when I was growing up.

But like the rest of the mainstream world, my in-laws do see that I am different, and over the years, they have helped me learn to socialize with people outside the little world I was raised in. Through a lot of love and acceptance, they “polished” the socially rough edges I had, and taught me how to interact effectively with friends, family, and strangers, alike. Now, when we visit, I blend with them much better, socially. On the outside, anyway. Looking at that mug reminds me that I can learn better how to interact with people, and that I can do a reasonably good impression of a normal person. My in-laws have shown me it’s possible.

After I place the one-cup filter holder on top of the larger blue mug from my in-laws, I take a brown #4 paper coffee filter out of the box. I fold it precisely along two sides and I place it carefully in the filter the way I’ve found most effective for dripping coffee. I then measure out a heaping spoon of coffee from the blue ceramic coffee holder, followed by 4/5 of a scoop of coffee. I do it that way just because it seems like the right thing to do. I know the amount probably comes out to two even scoops, but there is something about having a mounded first scoop and a second scoop that’s not quite full, that is very satisfying to me. On days when I “mess up” and do not measure my coffee in just this way, I become very agitated, and it puts me off my pace from the very start of the day.

When the coffee is all set up in the filter, if the water is still not close to boiling, I sometimes make myself a bowl of cereal. Sometimes I’ll have cold cereal, but this morning I decide to make myself some oatmeal. I rip open the paper packet of instant oatmeal in a smooth, satisfying movement, relishing the soft tearing sound and pouring the powdery meal into a cereal bowl.

As though off in the distance, I hear the tea kettle starting to whistle. I quickly click off the knob for the burner and move the kettle off the heat, and then carefully pour the boiling water into my coffee-filled filter.

I generally do this in three passes.

In the first pass, I fill the coffee filter up to the top with boiling water. I love to watch water mound up with the surface tension, and I delight in watching how it interacts with the coffee grounds. But sometimes I lose my grip on the kettle, and I pour more water than I want to, breaking the surface tension and sending a brown waterfall over the edge of the filter holder. I get so agitated when this happens. Absolutely beside myself. Some days, it actually sends me into a rage. This morning, I’m paying extremely close attention, as I fill up the coffee filter to the top. My attention fully fixed on the filter, I watch the level of the coffee water sink gradually, listening to the splash in the cup as it drips down. Sometimes I have to adjust the paper filter because the hole gets blocked and it didn’t flow as quickly as I would like. When that happens, a little flash of frustration wells up in me, and I want to lash out. But since I’m alone, there’s no one to lash out at, so I direct my anger by paying closer attention to the process of making my coffee.

Next, I lift up the coffee filter I look at how much coffee is in there – it’s usually about three quarters of the way full to the top of the mug, so I put the coffee filter back down and I pour more boiling water in on top of it, filling the filter up again to the top. I then I lift the coffee filter up a little bit to see how quickly it’s filling up the remainder of the cup.

Last, once the water gets pretty close to the top of my blue mug – within about a quarter of an inch or so from the brim – I quickly move the coffee filter holder to the top of my smaller mug, and I let the rest of the coffee pour into it. As the coffee drips, I pour in more hot water, filling the filter to the top, hoping that it’s going to be the right amount to fill my second mug without me having to make another pass at it. Making another pass – having to gauge how much more water to pour into the filter at the very end – can be stressful for me and agitate me, first thing in the morning. Thankfully, today, all goes well and my coffee is prepared without another incident or deviation from my plan.

This ritual is very important to me. It’s a set of specific steps that I really prize each day, and I need to follow them all in silence, with only the sound of the cats eating in the background.

While I’m waiting for the second cup to fill, I pour steaming hot water into my oatmeal, stirring and stirring it to just the right runny consistency. I also go to the refrigerator, open the freezer and take out an ice tray. I look at the tray to see where the larger cubes are, and I get one that’s not too small. I then put the tray back in the freezer and slip the cube into the coffee cup. I didn’t drop it in, because then it splashes everywhere and enrages me; I try to slip it smoothly into the cup, so that it bobs easily on the surface.

I love to watch what happens to the ice when it hits the hot water. I love to watch how it melts. Sometimes a trapped air bubble will release with a little poof, or the ice will crack and snap in the heat. That startles me a little bit, but I enjoy thinking about the structure of freezing water that produces a dynamic reaction from seemingly inert materials. Sometimes I hold the cube between my fingers and dip it down in the hot coffee a little while, so the ice melts uniformly in a straight line with the hot surface of the coffee. Sometimes I create little ice sculptures, holding and turning it this way and that, letting the hot coffee chisel its horizon into the frozen water. If I had the time and independent means to indulge this fascination, I would probably spend a lot of time creating sculptures like this, like a small-scale Andrew Goldsworthy. I’ve thought a lot about how I would hold the ice cube – how I would get a caliper or an ice pick of some kind… how I would hold the cube in the hot liquid, and for how long… how I would preserve the cubist ice sculptures in a cold room paid for by avant garde art enthusiasts and/or patrons… how I would exhibit my creations in a warm world… how I would felt about creating the sculptures, as I made them .. But right them , right now, I have to make a living, and I have a job to do. So, my career as a natural-materials sculptor will have to wait.

2. Into the Day – Part 1

Wonderland_Walker_5Peeved with myself for getting bent out of shape over having damp hands and wrists, I head downstairs to the kitchen. My posture feels different today – I’m stooped and leaning a little to one side, my movements jerky, not fluid. I hold my head tilted a little to the left, and I bend forward slightly as I shuffle to the top of the stairs and reach for the banister.

I’m clumsier than usual this morning, and as I move slowly down the stairs, I hang on tightly to the railing. I try to move quietly, but the creaking of the wooden stairs cuts through my head like nails on a chalkboard. No matter how lightly I try to walk, the wooden steps complain at my weight. My hearing is acute… painful… picking up everything around me like a high-powered lavalier microphone, as I descend from the second floor, and it doesn’t make it easier for me to keep my balance. It feels like everything is conspiring, this morning, to keep me from moving smoothly into my day, and waves of frustration churn in the back of my mind. I can’t indulge that emotion right now, though; I force myself to concentrate on keeping my balance so I don’t fall. It’s more important that I reach the bottom of the stairs, than that I feel positive about the whole experience.

Near the bottom of the stairs, the light switch protrudes from the wall and grazes my knuckles, and I silently curse whoever built this house for putting the switch where it can hurt my hand. I’ve bruised myself on that switch numerous times – especially when my partner and I first moved in – and I’ve gotten in the habit of moving my hand away from it at the bottom step. But today I forgot, and my knuckles are paying the price.

At last, I reach the bottom of the stairs. Our two cats are waiting for me in the kitchen. They await with great expectation, knowing that our routine is the same every morning. First, I put water on for coffee, then I feed them their first wet food of the day, I make my cup of coffee, sit down and write notes (sometimes petting the cats who come over for attention), then I head back upstairs and get in the shower, get dressed, check in with my beloved to wish her a good day, and head out to work.

This precise order of steps usually works well for me. But this morning seems different than others – it feels more difficult, more challenging. As I walk across the kitchen to collect the tools I need to feed the cats and make my coffee, I find myself walking on my tip-toes. It feels a little strange, walking like that, but the thud of my heels on the floor reverberates through my whole body and thunders in my ears. Walking on tip-toes is the one thing that spares my ears, spares me the pain of that seemingly ridiculous and unlikely state. I hate how loud simple footsteps can be, but today – as with many other days – there’s not a thing I can do about it, except walk up off my heels. In any case, no one else is watching to interrupt me with questions about why I’m doing that, or to make me feel insecure and self-conscious, so I go ahead and tip-toe gingerly across the room.

The cats are delighted that I stick with our routine. They have no problem with my predictability. It’s a good thing, too, because I cannot tolerate any break in the usual pace of my mornings. Especially not this morning. If I lose my place, I get confused, I forget what I’m doing, and there are consequences. When I get “lost”, I fall behind and don’t do the things I’m supposed to do. At home, I get in trouble for forgetting things, and at work, I get in trouble for lagging behind and letting things fall between the cracks.

If I have to think too much about what I’m doing — because my routine is broken — I also literally feel like I’m falling. I cannot maintain my equilibrium, I get nauseous, sick, anxious, frustrated, and I’m off to a bad start for the rest of the day. I also tend to get panicked in tough situations, if I’m off my routine, first thing in the morning. I’ve often heard it said that certain types routines are inexplicable and pointless and a sign of disorder, but when I’m in rough shape, like today, routine makes total sense.

If I have a routine I can follow, I can literally keep my balance, because I can anticipate the actions I’ll be taking, and I don’t have to think my way through each and every action I take.

In fact, the degree of my comfort and ability to function first thing in the morning is often determined by how well I stick to my routine. Especially when I’m having balance issues and my senses are all on overload, routine is vital to my normal functioning. It enables me to go through a predetermined set of productive and effective motions without needing to focus my full attention on them. When I’m off balance and overwhelmed, paying full attention to anything other than keeping upright and keeping my nausea down, is just not possible.

I can’t stop my world, just because I’m off balance. I have to get to work. I need to pay the bills. I need to get on with my day. I need to live my life like any functioning adult who’s supporting a household.

Routines enable me to do just that… and keep my balance at the same time.

“Thank you” would suffice – but I just couldn’t figure that out

Image description - a pod with 6 peas. Five of them are green, but one pea is red and stands out from the others.
Image description – a pod with 6 peas. Five of them are green, but one pea is red and stands out from the others.

I was out shopping for stim toys yesterday at a local gift store, when I had one of those typical geek-out moments with NT folks who weren’t nearly as enthused about my subject as I was. And true to form, I couldn’t stop that downward slide into enthusiastic social awkwardness that left everyone feeling a bit strange and strained.

I guess maybe I was feeling a little self-conscious, because I was buying the colorful squishy and bendable toys that are supposed to be for small children, but were for me. I was really caught up in examining them, literally like a kid in a candy shop, and I felt a little self-conscious… braced for some social interaction, where someone might come up and ask me what I was doing or try to strike up a conversation, and then I’d find myself explaining what I was doing, and why.

People like to talk to me. It’s the bane of my existence. I do long for human contact, but it’s so damned fraught with (insert just the peril of your choice here) that I just dread it. I get confused. I get turned around. I misinterpret what people say. They misinterpret what I say. And worst case, is when someone thinks I’m being more forward than the average bear, and they take it as a flirtatious or sexualized invitation. That’s gotta be the worst. Not only am I happily married for 25+ years, but I’m also about the last person to desire an outside dalliance. When I was younger, it was one thing. But I’ve got no energy for that sort of thing, anymore.

Truly.

Now, with regard to my anxiety over feeling compelled to explain to people that I was looking for stimming toys for myself… I could have easily passed as a parent or an aunt buying toys for her child for her nieces or nephews or a friends kids or whoever. Despite my compulsion to just lay it all out there, I wouldn’t have had to tell people the whole truth about what I was up to, including that — guess what, I’m autistic, and I need to have extra help keeping myself focused and calm due to sensory overload. I could have pretended to be a loving mother or aunt or friend buying for an upcoming birthday. But it was the end of the day, and I didn’t have the energy to pretend. I just wanted to enjoy the experience of getting myself some stimming props — really enjoy it.

I guess I did feel self-conscious about it, though. And I guess that made me nervous.

That whole going out in public thing.

Anyway, I just wanted to get out of the store. I didn’t want to chat with the ladies behind the counter. I just wanted to pay my money, grab my toys, and go away, so I could play with them and soothe myself and just enjoy myself, at last.

It almost worked, too.

I was at the checkout counter and had just about completed the transaction without incident, when one of the young women standing behind the counter complimented me on my blouse. I was wearing one of my light silk blouses for work, which is one of my favorites. I have five of these types of blouses, each with a different pattern and in a different color, and they are lifesavers. They’re dressy enough to wear to work, but they are also incredibly comfortable. The silk is very light, and it doesn’t chafe. I can roll up the sleeves, or I can leave them down, which is rare. My wrists are very very sensitive to touch, and I usually have my sleeves pushed up to near my elbows. These blouses are different, though, and they don’t bother my wrist as much.

And the best thing of all, is that I have enough of them that I can wear a different one on each day of the week and not run out of comfortable dress clothes for work.

“I like your shirt,” the young lady said.

“Thank you!” I smiled in my brightly NT-ish way, all the while just wanting to get out of there.

“They’re nice colors,” said the other young lady.

And I was off to the races.

“Thank you,” I said with a sudden rush of energy. “It’s really comfortable, too! It’s warm in the winter and it’s cool in the summer, and they’re light and feel really great!”

The women behind the counter smiled at me in that way that I can never figure out. Do they want me to shut up, or keep going? I couldn’t tell. So, I continued. I told them all about how I have four more of them at home, all with different colors and patterns, so I have a different one for each day at work, and once again — how comfortable they are, in both summer and winter. Seriously, those blouses are a Godsend, as most clothing is (and always has been) a torture to wear. I was so happy to share that information with people I thought were interested, but the whole time they started to get this distant look in their eyes like they were sorry that they had even mentioned it.

Not to be deterred, I told them about how they traveled well, then I could fold them up tight (I made a squishing motion with my hands) and pack them (I mimed putting them in a suitcase), and then when I put them out on the hanger, they fell right out (my hands waved in front of me, as though with a life of their own). It was a total geek moment, replete with all the delicious details I could muster.

And by the time I was done talking, I realized it was far more detail than any of the young women at the gift shop actually wanted to hear.

Panic. Utter panic. I had that sick, sinking feeling in my gut — you know, the kind you have when you’ve been having a wonderful time sharing about things that mean so much to you, and it brings you to life… and then you see the glazed-over looks in the eyes of the people you’re talking to, and you see a sudden glint of something that could be mean-spirited judgment, and like all those other times, you expect to turn and walk away, while they whisper things behind your back about being “weird” a “geek” or just “really, really strange”.

It’s that moment when you realize that, once again, you’ve mis-read a situation, and while you thought it was wonderful and energizing, it was actually a trap that you walked right into. A trap that you set, yourself, and that you can’t even extract yourself from, because by the time you figure out what’s what, the damage has been done, and once again, you’re the weird one out. On the margin. The butt of jokes. The freak, the weirdo, the crazy lady who can’t take a hint.

And it’s crushing. Because all I ever wanted to do, was share what I love more than anything – to spread the joy, and see someone else light up the way I do, when they too realize the beauty and elegance of an idea, a thing… a dressy blouse for work that doesn’t trap you in a hell of tactile torture that you’re obligated to wear, or you might not fit in… you might not look like a good team member… you might get marginalized, and eventually lose your job.

This is one of my ongoing social issues that really undercuts me on a semi-regular basis. I get so excited about things that I care about, that I don’t actually realize that other people don’t want to hear the level of detail that I’m offering. I can’t for the life of me understand why someone wouldn’t care about these things, because it makes so much sense, it solves so many problems, and it’s such a beautiful and elegant solution that you don’t come across every day.

But those young women probably never could have related to my elation. It was just a pretty blouse to them. But to me it was a lifesaving tool to keep me properly integrated with the rest of the NT world, keep food on my table, and not exhaust me with tactile overload for 9 hours out of the day. There’s no way they could have known just what that blouse — and all the others like it — meant to me. Because they’ve probably never had a single moment of their lives enduring excruciating autistic overload, because “that’s what everyone else does”.

All they probably wanted to do was pay me a complement. I got that, as I was getting in my car and driving away.

Once again, too little realization, a little too late.

And that’s what happens when I’m fatigued, overloaded, and I have a handful of stimming toys I’m super excited about.