Of #autism and naming and claiming

Hanne Blank offers a helpful way into this discussion in her book Straight: The Surprisingly Short History of Heterosexuality with an analogy from natural history. In 2007, the International Institute for Species Exploration listed the fish Electrolux addisoni as one of the year’s “top 10 new species.” But of course, the species didn’t suddenly spring into existence 10 years ago – that’s just when it was discovered and scientifically named. As Blank concludes: “Written documentation of a particular kind, by an authority figure of a particular kind, was what turned Electrolux from a thing that just was … into a thing that was known.”
Hanne Blank offers a helpful way into this discussion in her book Straight: The Surprisingly Short History of Heterosexuality with an analogy from natural history. In 2007, the International Institute for Species Exploration listed the fish Electrolux addisoni as one of the year’s “top 10 new species.” But of course, the species didn’t suddenly spring into existence 10 years ago – that’s just when it was discovered and scientifically named. As Blank concludes: “Written documentation of a particular kind, by an authority figure of a particular kind, was what turned Electrolux from a thing that just was … into a thing that was known.”

I just found this, following my commentary from the other week about how naming a thing doesn’t mean you’ve invented it.

And we could say exactly the same thing about autism, with a few updates:

Autism is one of the year’s “top 10 new epidemics.” But of course, autism didn’t suddenly spring into existence 70 years ago – that’s just when it was discovered and scientifically named. . . . “Written documentation of a particular kind, by an authority figure of a particular kind, was what turned autism from a thing that just was … into a thing that was studied.”

Not to keep hammering on this pesky “nail”, but it matters.

It matters a lot.

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Welcome to the intellectual sinkhole – arguing about the validity of #autism #diagnosis

sinkhole in pavement with cracked asphalt around it
Well, that was exciting. I guess. Over the past couple of days, yet another drama scene erupted on Twitter with people arguing about whether self-diagnosis is valid for autistics.

I mean, seriously, this is such a poor use of time.

Not because affirming the validity of others’ identity is pointless. Rather, because getting all spun up over it is. When we get all worked up with fight-flight responses, our ability to think clearly leaves the building. That’s how we’re built. It’s not even a thing you can dispute. It happens. Higher reasoning gets switched off by forces beyond our control — which kick in prior to conscious thought. By the time our systems have figured out that it’s happening, it’s already been done.

And we’ve probably said or done something we wouldn’t have done otherwise. If we’d had our wits about us and had taken a deep breath and gotten our sympathetic nervous systems calmed down, the tone policing wouldn’t have happened. The swears wouldn’t have unleashed. The accusations (some of them pretty accurate, but not the most kind) wouldn’t have flown.

And the argument might have remained a civil discussion.

Not yesterday, tho’. Nope. Not at all.

As a result, I muted a handful of people whom I’ve followed for quite some time. I didn’t block them, just muted them. Needed a break. Needed to not have to listen to them impose their versions of things on me, as though their version is the only thing that matters. I tried reasoning. And that got me nowhere.

Because they’d already been hijacked, I’m thinkin’. They weren’t even there anymore — just a bundle of reactions and an overwhelming need to own the Whole Truth About Autism.

Sigh.

Which brings me to thinking about community. People seem to think that community is a warm-fuzzy-accepting place, where you’re accepted for who you are. Especially autistic community. After all, we’ve wandered — some of us for years, even decades — in search of our kind, our tribe. And when we find others like us, it’s a huge relief. We feel like we’re home. The “honeymoon” commences.

Then the community shows up.

And it’s not pretty.

For the record, I was raised in community — not a commune or kibbutz, but a community of faith and subculture that was tight-knit and well-defined and highly cohesive over generations. To this day, I know that if I ever fall on hard times, I can always — always — look to that community for help and assistance. Because we’re connected in profound, enduring ways that have withstood the ravages of centuries of religious persecution and opposition from the rest of the “world”. Those connections involve a whole lot of extended blood ties, as well as regular participation in shared activities. Church services. Family reunions. Weddings. Funerals. Baptisms. Holiness retreats. Potlucks. I’ve eaten more sloppy joes, coleslaw, and baked creamed corn than I care to think about. And I can toss a mean horseshoe.

I’ve also born the brunt of constant social violence, my entire life in that community. Continuous demands and requirements were forced on me, as a regular part of being part of the community. A lot of it was to enforce the appearance of neurotypicality — wear the right clothing, interact in the right ways, participate in the right activities, have the right interests, talk about the right things. I’m not putting the word “right” in quotes, because within that context, those were the right things. Everything other than the standard-issue, community-approved attire, behavior, activities, interests… those things were threats to the connection I had to everyone around me.

And they were not allowed.

Period.

If you did not comply, you were Out. And I mean Out. A lot of people left, over the years. I was one of those who split as soon as I could do so safely. I quit going to church regularly at 16. And once away at university when I was 18, I don’t think I went back… for years. I even broke from my family of origin for a number of years, just to get my bearings in the world. Community life had done its best to suck the independence and authenticity out of me, and when it didn’t succeed, it was vicious. Brutal. And not only to me, but to my extended family, as well.

When you live in that kind of community, if you screw up, your parents suffer as a result. And your siblings. And your aunts and uncles, your cousins, your grandparents. Anybody in your life who didn’t manage to steer you back to the straight-and-narrow was charged as an accessory to the crime of your “waywardness”. Everybody hoped, of course, you’d come home like that prodigal son. But in the meantime, if you weren’t around to pay for your sins, someone else would be made to pay.

So, when I hear people lauding the idea of autistic community, I have to smile. It’s a crooked, sideways smile that doesn’t reach the whole way across my face. Because to me, community doesn’t imply the same things it apparently does to others. And I wonder if people are genuinely aware of what’s truly required for community to thrive and survive? It’s not just about bringing people in and accepting them. It’s also about keeping certain types of people (and behavior) out, and establishing what’s not acceptable under any circumstances.

Community can be brutal. There’s just no two ways about it. And if we’re to truly build a new type of connection with others in an ever-expanding network of support for our autistic kin, we need to face that fact — and decide what we’re going to do about it.

Personally, I think we can use our autistic minds and perspectives to build something very different from the type of “neurotypical holodeck” I grew up in. That world was spawned in the trauma of 13th century western Europe. And it’s dragged a lot of pain and suffering along with it into the 21st century. There’s no need for us to replicate that. Yes, trauma and drama are very much a part of our autistic experience, but we’ve got a lot of very creative thinkers in our midst, and we’ve got a huge range of abilities and interests and capabilities and voices who can contribute to the discussion.

Provided we can actually listen to each other.

Which is an open question in my mind, to be completely honest.

Anyway, I’ve been thinking that rather than having a monolithic overall “autistic community” per se, autistic community might actually consist of different “pods” of interconnected folks who share deep connections in specific areas. And it may actually be less of a noun than a verb. Community is something we do, as well as something we have. It’s a living, breathing, thrashing thing/process.

And I’m building my own community, as I go, finding my own “tribelet” where I can. As for the larger community, it can be a bit of a trash fire at times, but I don’t have to engage with it.

It’s all an adventure. It’s all an unfolding process.

That’s half the fun.

And half the pain.

Of #autism and tardigrades – does naming a thing confer ownership? #SelfDXIsValid

tardigrade

And God said, Let us make man in our image, after our likeness: and let them have dominion over the fish of the sea, and over the fowl of the air, and over the cattle, and over all the earth, and over every creeping thing that creepeth upon the earth.

Genesis 1:26 (KJV)

And Adam gave names to all cattle, and to the fowl of the air, and to every beast of the field;

Genesis 2:20 (KJV)

So, God creates Adam (man) and awards him dominion over all the creatures of the earth. Over “every creeping thing that creepeth upon the earth”. And God also confers to Adam the right to name all the creatures. Naming, ownership and domination have gone hand-in-hand for an awful long time. And periodically, it rears its head in the autisphere in an almost predictable way.

Once again, the issue of whether autism “self-diagnosis” (self-DX) is valid, flares up on Twitter.

It’s the same discussion argument that keeps coming up, time and again. I’ve had my own back-and-forth with people who started out wondering aloud if their opposition to self-DX might be their black-and-white thinking acting up again.

And I, in my apparently amazing Svengali-like power, have managed to so sufficiently piss them off, that they decide… No, it’s not really their admitted black-and-white thinking blocking them. Self-DX is NOT valid, they say. Impossible!

I always have to wonder about people who feel entitled to judge and police others. I understand the desire for intellectual purity and a clear-cut set of guidelines that clearly demarcates the “autism community” (such as it is). I understand the need for clarity, for standards. I understand the attractiveness of having gatekeepers blocking the intrusion of Munchhausen-esque pretenders who are looking for attention and a little drama. And I understand the need to establish official boundaries around who lays claim to scarce resources (tho’ on that last point, let me be absolutely clear that scarcity of resources is a result of political choices, and there are ve$ted interests who have a $take in awarding and denying services, so that last point is a jagged little bone that tends to get stuck in my craw).

Here’s the thing, tho’… Autism isn’t something that any one scientist (or a whole gaggle of them) invented. It’s something they identified in conceptual terms they could clearly communicate to the rest of the world, and subsequently diagnose, treat, and otherwise establish dominion over those whom they diagnosed.

They may have invented the conceptual framework for thinking about us and identifying where we fit in the world, but they didn’t friggin’ invent autism. Kanner didn’t. Asperger didn’t. Bleuler didn’t. They just noticed it. Documented it. Wrote shit down about it, and went on to science (and in some cases commercialize) the heck out of it.

And because they didn’t invent autism (I don’t care what Dr. Grinker says about it), they don’t have the right or the ability to say, one way or another, whether a person is autistic or not. God knows, they’ve fucked up often enough to call their expertise into serious question. If those same scientists drove cars the way they identify autism, they’d all have lost their licenses years ago. Or they’d be doing hard time for having run so many people over. Repeat offenders, many of them. Producing shoddy research. Misdiagnosing or denying autism diagnoses to people in genuine need of assistance. Playing gatekeeper to an amusement park full of rides that lock you into the seat permanently and spin till you’re nauseous and throw up all over yourself and everyone around you.

And yet, magically, they still get to keep their credentials. They do their shoddy research. They do their awful assessments. They deny and screw up and never think twice about the effect they’re having on others.

But, they’re the “experts”… right?

Here’s the thing that completely baffles me, when it comes to mental health folks and scientist-like individuals who screw up the autism thing. It seems to me (from the outside, admittedly), like they’re constantly covering for each other. And rather than taking each other to task, they gloss over the omissions and commissions with some non-committal “Well, there’s still a lot we have to learn” or somesuch. This is completely inconsistent with the behavior I’ve observed in mental health professionals I know (and I know a lot), who are always at the ready, quick to jump on each other and call each other out and warn you away from such-and-such a therapist, in matters like unresolved trauma, family dynamics, couples therapy, and any number of other hot-button psychotherapeutic topics.

And yet, when it comes to autism… silence. No judgement. Not even a constructively critical peep. Nope. It’s all “Well, nobody but a professional can actually diagnose you as autistic. That’s just how it is. Oh, and here’s my card…”

How does that work exactly? Seems that autism is good business, all around, and everybody’s looking to cash in on it. It’s just autism, right? And the people who are harmed by the most enterprising types, are the ones least likely to protest, to defend themselves, to make a stink.

Yeah…

So, about those tardigrades — teeny, tiny little micro-animals that can survive in outer space, as well as impossibly harsh conditions (like, a degree above absolute zero)… Unless you have an extremely powerful microscope, you can’t see them. And until we had the equipment, they might as well have not even existed. There’s a whole lot of stuff (animals, planets, star systems, chemicals) which we’ve only recently discovered in the past 100 years. It’s safe to say, those things have existed throughout time — and many will continue to exist, long after we’re gone. Just because someone noticed they were there, gave them names, and figured out how to study them, doesn’t give those people ownership of them. Nor does it mean they invented them.

They simply noticed they were there and put words to their observations.

Kind of like autism.

Just without the dehumanization that comes with all the Theory of Mind and “locked in” bullsh*t.

So, the next time somebody tells you that Kanner or Asperger “invented” autism, or behind-the-times “experts” are the only ones who are qualified to say you’re autistic, I invite you to join me in a hearty, boisterous laugh.

And then just walk away.

Sharing : Rethinking Autism: From Social Awkwardness to Social Creativity

Instead of viewing people with ASD as “socially awkward” individuals who need to be “fixed,” we should instead conceptualize them as socially creative. They may not do things the “right” way, but they do them their way.

Read the rest of this great article here

LISTEN: Black, female and autistic — hiding in plain sight – Sharing from Salon.com

If advocates for the autistic community are going to effectively place our cause within the larger spectrum of social justice movements, it is imperative for us to realize that — as with every other form of social discrimination — there are intersections between our hardships and those experienced by those who encounter racial, sexual, and other forms of bigotry.

This is why I reached out to Morénike Giwa-Onaiwu of the Autism Women’s Network, who chairs the Autism & Race Committee. After previously interviewing Giwa-Onaiwu for an article on the intersection between autism and feminism, I was struck by her observation that “I believe that my experiences as an autistic person has definitely been affected by my gender and race. Many characteristics that I possess that are clearly autistic were instead attributed to my race or gender. As a result, not only was I deprived of supports that would have been helpful, I was misunderstood and also, at times, mistreated.”

Please read and listen to this awesome piece: LISTEN: Black, female and autistic — hiding in plain sight – Salon.com

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.

Stella and the imperfect #autistic storm

person wading through keep snow on a winter hike in the alpsWe were supposed to have an awful, terrible winter storm yesterday. It was supposed to shut everything down for two days in the area where I live. Driving home from my parents’ place in Pennsylvania on Monday, we passed one sign after another on the highway warning about blizzard conditions for both Tuesday and Wednesday.

Well, it’s Wednesday, And it’s a bright sunny day, with beautiful blue sky and white puffy clouds floating around. There’s snow on the roads in places – especially on the back roads – and the sides of Main Street are piled high with plowed snow. But in terms of Snowmageddon, this was pretty much a non-starter. If anything, it was just another winter storm like many we see in New England. In fact, it was one of the less dramatic ones.

We’ve had storms in the past that dumped 27 inches on us in the space of a day. We’ve also had years where one storm after another dumped several feet of snow on us, day after day, and the snow was so high, I couldn’t see many of the big rocks in my backyard. I know we’ve had a lot of snow, when my backyard is a flat white surface. That rarely happened this year, and it certainly didn’t happen after Winter Storm Stella yesterday.

All of the drama and all of the anxiety about Stella reminds me of the drama and the crisis that often gets spun up around autism. I just spent four days with people who are very spectrum-y, and not once did I feel like there was something wrong with me when I didn’t make eye contact, or I stimmed, or I flapped my hands. This was true both inside my parents’ house and outside. My quirky nature has always been seen as just who I am in the place where I grew up. That doesn’t mean it was easy growing up there, but it does mean that all of my characteristics which the mainstream considers dysfunctional are simply considered attributes of my personality, which needed to be adjusted or mitigated or managed in some creative ways, to make it possible for me to interact effectively with my family and the larger community.

It seems to me, that the drama around autism is roughly akin to the drama the people in southern states feel when they get 6 inches of snow. All hell breaks loose, everything grinds to a stop, and the regular flow of life is completely disrupted. For those families who are not comfortable with the characteristics of autism, or who have different standards of behavior and being, I would imagine having a child who does not conform, does not comply, and seems to ostensibly have no capacity for doing so, would be roughly the equivalent of living in a tropical climate and getting 6 inches of snow in a day’s time.

For those of us who are familiar with heavy snow storms, we take a 27 inch storm in stride, and to have the equipment and the attitude and the skills to handle heavy snow falls, it’s really no big deal. Likewise, when you understand the rigors that accompany autism, and you can read the signs, you can adapt, and you adjust accordingly. It’s not at all a horrible epidemic pox that brands you and your family as rejects for all time.

That all being said, with autism awareness month is right around the corner, it seems like everyone is gearing up for yet another version of winter storm Stella. For those of us who know how to handle these things, it’s not always that big of a deal. Of course, it’s not easy, sometimes it’s damned hard, and it takes concerted work, just like clearing 1.2 metric tons of snowfall from your long driveway. But it can be handled. We can deal with this. It’s not the sort of thing that happens every single day to every single person, and we all handle ourselves with greater or less or degree is a facility, but still, it needn’t be a catastrophe, when it does show up.

As for me, today I am enjoying the snow. I am enjoying the last throes of winter. I am really enjoying the fierce cold snap, which makes my internal thermostat kick in and warm up, and I know from experience that whatever Mother Nature sends my way – whether in the form of snow or my autistic tendencies – I can deal with it. It’ll take some work, and it will take some doing, but it can be done.

And it doesn’t have to be a huge fucking deal.

Another #autistic use for the DSM-V

old bookI’ve been thinking a lot, lately, about how we define autism and whether that is even accurate. I’ve talked before about how mainstream society seems to think that the symptoms of our autistic distress actually constitute autism. That’s just plain wrong, as far as I’m concerned.

I consider autism itself to be a distinct neurotype, which has been very well-concealed over the aeons, because societies in the past provided ways for all members of a community to contribute according to pre-set guidelines. As we have seen those “exoskeletons” of social conventions dissolve, our “endoskeletons” of individual identity – our strengths and weaknesses, our diagnosed conditions and disorders – have become increasingly pronounced, to replace the social exoskeletons of customs and conventions which used to define where our relative strengths and weaknesses lay.

Of course, within the context of considering autism a distinct and commonly occurring neurotype (rather than anomalous disorder), the question comes up about what purposes the DSM-V actually serves. That manual of diagnostic conventions, so useful when it comes to insurance billing and so revered when it comes to identifying issues that need to be addressed, effectively pathologizes autism as a disorder, rather than identifying it as a specific aspect of the human condition.

Of course, getting rid of the DSM and or removing autism from its listing, has a slim-to-none chance of happening. But if we’re stuck with it (for the time being – after all, homosexuality was eventually stricken from that record) might there not be another practical use for that manual? Might it not actually come in handy in certain ways?

From where I’m sitting, on this bright snowy morning, 40 miles west of Boston, Massachusetts, it seems to me that the DSM and the degree to which artistic people “meet the criteria” can actually help to determine where society itself is breaking down in regards to its treatment of its autistic members.

If we consider that problematic behavior is actually a symptom of individual distress in the face of essentially mutable conditions, rather than a sign of permanent personal dysfunction, we can measure the degree of the different criteria and how they occur in an individual to identify where the community at large is failing them.

If extreme sensitivities are noted, that could indicate a heightened degree of environmental stress, whether from noxious scents, chemical excess, or extreme social pressure that is completely inappropriate for that individual’s personality and innate tendencies.

If repetitive or stereotypical behavior is noted, it could also indicate heightened degrees of stress, which require some sort of adaptive or relief-oriented behavior (stimming), to offset the impact.

If lack of eye contact is noted, that can actually indicate hyperfunctionality in terms of processing information, where the individual is actually focusing intently on the subject at hand, rather than engaging in the social back-and-forth of eye contact, expressly so that they can reply effectively and appropriately. The more eye contact is noted as a deficit, the more it’s an indicator of needed training by the person who’s complaining about that behavior. They need to be educated about what goes on when we are not looking them in the eye, and their anxiety around that behavior (which keeps them from dealing effectively with us) needs to be dealt with.

That is to say, they need to deal with it, not put the onus of that effort on us.

All in all, I think that autism shows up much less as a disorder, when you’re in the company of like-minded people with  comparable neurotypes. Within the company of your autism spectrum peers, you’re not going to be considered dysfunctional or disordered – unless your behavior wanders into the fringes and disrupts community interactions and cohesiveness.

All in all, I think that including autism in the DSM-V is problematic, but since it’s already there, and since there is almost no chance of it actually being removed in the near future, we might as well make use of that.

It may be grasping at proverbial straws… but until things change for the better, and autistic people are relieved of the stigma and drama around the official definitions of “autism”, we might just be able to wring some benefit from that sodden rag of medically induced hubris, after all.

The sun of my own universe

tree in snow with the sun shining aboveI’ve been thinking, lately, about how much my attitude about myself has changed in the course of my life. I actually have a pretty positive regard for myself, including my skills, my abilities, and my overall character.

This wasn’t always the case.

In fact, for most of my life – up until about five or six years ago – which would put me at about 45 years – I had such a profound disrespect for myself and such an intense dissatisfaction with just about everything about me, it was well nigh impossible for me to interact with other people as though I were an actual human being. Why would they want to? I was a reject. A terrible mistake of a human being. I couldn’t get anything right, couldn’t figure anything out, and everything promising that I started always came to naught.

It seems strange to think about it now, but I hated myself so intensely, and I could see no good reason that I was on the earth, other than to do the bidding of others. At least I was useful that way. Other people could always find a use for me. I hated everything about myself. I hated my face, my nose, my teeth, my ears, my hair, my posture, the shape of my legs, and just about everything that had to do with my personality, my abilities, and many other things that make me who I am.

From what I could tell, other people seemed to like me well enough, but I couldn’t see why they did. I thought that everybody else was just a flaming idiot, for not being able to see how useless piece of crap I was. And every time someone paid me a compliment or tried to get to know me, it made me dislike and detest them all the more. Who in their right mind would even bother with me, let alone pay me a compliment or try to get to know me?

Idiots. They didn’t know any better, and they were too stupid to figure it out.

It’s really pretty amazing, when I think back about it. My self-hatred was so intense and so all-encompassing, there was no chance for me to get started on anything substantive in life, or follow through, or reap the rewards of all my hard work, because I could not for the life of me believe that I actually deserved any of the rewards I might receive.

I was a waste of space and an oxygen thief. Nothing more.

I keep trying to figure out how I could have gotten to such a miserable state. Who thinks that about themself? Who actually believes something so completely off-base and untrue? I now know for a fact, I am not a bad person, I am not a waste of space, and I am not just taking up oxygen that someone more deserving should be using.

But I didn’t know that until about 5-6 years ago.

I think that Aspergers played a huge role in my self-image. It was so much a part of my life and my make-up, so much a part of me, and it shaped me in ways that really set me apart from the norm. Looking back, I see that that could have been a completely, totally excellent thing. Just like it’s a totally excellent thing now. But I lived in a world where very few other people shared my opinions or sensibilities — or the ones who did, covered them up.

I grew up in a world where everyone was expected to be exactly like everyone else, and if you did not uphold the norms, you were an outcast. Punished. Actually, the worst thing was not to be cast out, but to be pulled in even tighter under the iron fist of community cultural norm enforcement, and constantly bullied, coerced, threatened, insulted, belittled, and so forth – every conceivable technique being pulled out of the proverbial cultural toolbox — to force me to become the type of person that other people could tolerate.

A person I could never, ever be. And resisted becoming at every turn.

So, my basis for understanding who I was and how I was was fundamentally grounded in me not being right. I did not uphold the cultural norms. I could not uphold them. And the punishment came fast and furious, from every side.

Being my uber-Aspie self, at an early age, I developed a flawed logic around why I was being punished. If you were being disciplined, it was because you were a bad person. Because you’d earned it. In my mind, I thought I deserved the constant pressure and mistreatment. Everybody else seemed to think I did, so therefore it must have been true.

Another important element of that, was how bad I felt all the time. Physically, I was in a lot of discomfort from sensory extremes – mine, not the world’s – as well as tactile defensiveness. I had a terrible time with touch, as a kid, and I can’t remember ever wearing clothing that actually felt good to me. It was always scratchy or rough or painful in some way. And since I was in pain, and logically I deduced that the only time that you are caused pain is when you have done something to deserve it, I figured that it was my fault. I had done something to deserve all that pain. I was a terrible person who had earned the punishment.

Otherwise, why would it be happening?

I think that this was especially true, while I was menstruating. My periods were extremely difficult for me from the start, kicking off with several days of intensive PMS, which was always a very stressful emotional roller coaster. The days of intense, passionate upheaval were followed by a day and a half of crippling pain, vomiting, confusion, and not feeling like I was even in my body. After I spent a while throwing up, my body seemed to right itself, and I could get on with my life. But every single month, it was same series of lost days, the same useless hours and hours and hours of intense stress and suffering.

And that took its toll.

The great irony is, although I thought I wanted kids when I was younger – probably just a knee-jerk response to what the world around me expected me to do – I never had any desire to bear or raise children. So all that pain was for absolutely no purpose. It was just a phenomenal waste of time and energy and human spirit.

I’ve heard about some women choosing to have hysterectomies. I believe Temple Grandin actually had an elective hysterectomy, and that choice probably would have made a lot of sense for me. Then again, normal hormonal fluctuations and profiles – if you can call what I experienced “normal” – are a big part of what I believe gives women a certain intuitive advantage in life. I’m just sad that the price was so high, in my case.

Ever since I entered menopause, things have calmed down considerably, and I have noticed a real correlation between myself regard, and the absence of a monthly cycle. It’s really pretty phenomenal, when I think about it, to not be on that monthly roller coaster of intense stress – and at the same time trying to maintain a regular life, staying functional through everything, despite crippling pain, nausea, confusion, and being just a shadow of myself. Not having to deal with any of that for the past five years, has made a tremendous difference. It’s also translated to my self-image. I’m much better now, thank you very much.

I sometimes wonder how much might be possible, if women on the spectrum were properly educated about their cycles, as well as given the proper tools to deal with the ups and downs. I don’t know if that would have made a difference in my earlier youth and adulthood, but I do know that menopause has made a tremendous difference for me now. Of course, the standard-issue doctors get all worked up over my “premature” menopause, telling me that my life is going to be cut short by x-number of years, for every year my end of cycle is premature. People love to get all worked up over that stuff, but I actually have a history in my family of women going through early menopause, and they lived to be close to 100, so all the alarmist doctors can just take a hike, as far as I’m concerned.

But I feel like I veered off course, and I’m not sticking with what I meant to talk about.

Self-regard… self-respect… and just not being a mean-spirited bastard to yourself, is a new experience for me. Hooray for menopause, and hooray for my growing sense of consideration for myself. For the first time, I feel like I can genuinely see, recognize, and fully appreciate my strengths and my skills. And I can see very clearly and logically, that I actually am a really cool person with a lot to offer. Everybody who told me otherwise over the years, punishing me for being different, punishing me for not being exactly like them… they were wrong. So very wrong.

And that’s what I have to remember, as I embark on a family drama around aging parents in declining health. I am the oldest in my family, and I am the one most able to take care of my folks, in times of emergency. This is one of those times. It’s hard enough trying to reason with frightened parents who are experiencing cognitive decline, and who are surrounded by people who make terrible medical and lifestyle choices, themselves, but when the parents you’re working with have also treated you like crap for most of your life, and laid the groundwork for your terrible self-image with their judgment, their heavy-handed, fundamentalist, hetero-normative, socially violent discipline, over decades of shame and coercion, things get even more interesting.

So, I guess this is a test of how I’m doing in terms of my self-image. And it’s a test of how well my logic can withstand the onslaught of cultural bias, hetero-normative prejudice, and narrow-minded adherence to norms and standards which serve no purpose other than to cement the power of a small group of people and let them feel superior about themselves.

Life is full of tests, and this is just another one. That’s what I have to keep in mind, as I move forward into drama lasting days and weeks and months… possibly years to come. The people who I am helping, have been actually very cruel to me over the years, but that can’t stop me from doing the right thing for them, making sure they are taken care of, and making sure that they get the best medical care possible.

How ironic, that the one person who can help them the most, is the person they probably treated the worst for so many years.

Well, so it goes. I know I am not the first person to have this experience. I have heard many such stories (black sheep of the family gets to take care of Mom and Dad) in the course of my life. I can’t get spun up about it, and I can’t let it get to me. I just have to keep on, making the right decisions for the right reasons, regardless of what my parents think about me, what my siblings say about me, but what my parents’ harebrained immediate social circle tries to enforce.

There’s always the chance, too, that all of my efforts will be in vain, and everything will fall to pieces for no good, logical reason. It’s entirely possible – and actually likely – that everything I try to do to help will be pushed away and rejected. But I still have to try.

Because I know now, after all these years, that I am not a freak, not a reject. I’m not the loser, the weirdo, that everyone treated like a useless waste of space for so many years. On the contrary, I have every right to be here, I have every right to respect myself, and all of the evidence is there that I actually do make considerable contributions to my world, even if I’m not rich and famous, even if I’m not the darling of their community. That’s the role my siblings play.

I’m strong. I’m resilient. In situations of intense stress, I’m impervious to panic — that comes later, when the dust has settled. I’m resourceful, insightful, and I can be extremely persuasive, when I put my mind to it. I might have a hell of a time talking to my own doctor(s), but I can communicate with others’ much better. I’m great at both strategy and tactics. I’m the sort of person you want on your team. I know that now. It took me 45 years to realize it, but here I am.

Ta da!

So, another day comes, more medical developments emerge, and life goes on. I’m just one small person in the world, and maybe I don’t have a lot of consequence in the grand scheme of things, but I am the sun of my own universe, and that means something.

In praise of positive discipline

plane flying upwards with smoke coming out of the back
Life just happens. I get to decide what to do with it.

It’s been about three months since I had my official autism assessment that, yep, confirmed what I’ve known for 18 years already. I’m squarely on the spectrum.

Ta da!

There have been some ups and downs over the past months, as I’ve thought back on all the stuff that went on in my life… thinking how different things might have been, had I known what the deal with me was, and had I actively managed my issues all along the way.

All this old pain came up. Lots and lots of it. I went into a bit of a tailspin,

plane nosediving with smoke coming out of the back
Nobody’s forcing me to go into a nosedive.

I disclosed to an old friend. Her response was mixed. She was a little dismayed that she’d done things in the past that really put me off (tho’ I didn’t tell her). And she apologized for not being more sensitive. I brushed that off. And for the most part, her reaction was to pretty much shrug it off and said, “Well, you’ve always just been you, so…”

She didn’t see why an official DX was a big deal. To her, I was still the same person, and knowing the name behind it didn’t actually change things for her. If anything, it just made her a little uncomfortable, and she became more self-conscious. So, in the end, there wasn’t much point to disclosing to her, after all. I mean, an official positive-for-autism assessment means the world to me, and it helps me put things in perspective. But the rest of the world doesn’t exactly know what to do with that specialized information. Just like they don’t exactly know what to do with a lot of other specialized information — like how to operate a drill press safely, while drilling holes in pieces of metal… like how to code up an interactive web page… like how to quickly get the lay of the land in a new locale and find all the hardware stores within a 10 mile radius and identify which among them have the best deals on potassium chloride water softener alternative (I highly recommend it!), home repair supplies, and that particular type of steel wool that isn’t chock full of chemical cleaning agents.

I don’t fault the rest of the world for not being as adept at acquiring the specialized knowledge which I consider required for effective living. And I’ve stopped faulting others for not understanding autism / Aspergers and how to best interact with people like me. I’m the resident expert in that, and I realize it’s “on me” to give them the clues they need and the guidance they desire, to be on good terms with me (if they like).

I’m headed down to see my extended family for Thanksgiving. I’ve been considering disclosing to them there. I’m reconsidering. I think I’m just going to let that ride. My nephew who’s such a textbook Asperger’s case may or may not be there. I’m not sure I’m going to have time to talk with him, anyway, because we’re all like ships passing in the night, with my side of the family. It will probably be easier to just email him about it.

Anyway, what was I going to talk about? Oh, yes – positive discipline.

A lot of people have a negative perception of discipline. They equate it with punishment – perhaps because when they were punished (perhaps unfairly) as kids, it was called “being disciplined”. I don’t have the same association. For me, discipline is a key cornerstone of life. I have to have it, or things just dissipate and fall apart. And that’s where my tendency to descend into chaos actually comes in handy — because it’s forced me to acquire habits that keep me on the good foot… balanced and productive… happy and healthy. I have to really work at it, to be honest. It doesn’t come naturally. But because I descend into panic, if things come apart at the seams and I lose sight of the patterns in my life, the alternative to NOT being disciplined is simply too stressful for me to handle.

So, I keep myself intentionally oriented… on track… disciplined.

And that’s a very positive thing. It’s not the most pleasant experience, to live with this little cloud of panic / anxiety hanging over my head. But hello, I’m a grownup. And I am totally capable of doing something about it. I don’t have to give in to it. I don’t even have to experience it fully. I am perfectly capable of keeping myself on my schedule with my routines and my discipline and my re-direction of my nervous energy in a positive direction.

The net result of my management of the considerable levels of pain and discomfort I can find myself in, over the slightest little thing, is a positivity and a self-directed-ness to my life that outweighs and out-classes any amount of panic, anxiety, dread, discomfort, confusion, and so forth — all the stuff that comes along with living on the autism spectrum. And the fact that I am really not a fan of living an excruciatingly disordered life, gives me impetus to do something about it.

Because I can.

So, I do.

And in the end, I have to say that the pain and discomfort and confusion are so, so worth it. I doubt I’d have the fortitude and the discipline I have, without the downsides.

Now, I’m not going to tell anybody else how to live their life. I’m not going to pass judgment on anybody else who’s living on the spectrum in extreme distress. I feel the deepest compassion for them and their situation. Mental illness often walks hand-in-hand with Autism / Asperger’s, as does physical conditions like EDS / hypermobility. I’m in no position to judge anyone else, other than myself, and I can only speak to my own experience.

My own experience is one of living for half a century of pain and confusion, frustration and unmet needs… The vast majority of them unmet during my childhood, teen years, and early adulthood… even my middle-age.

But there’s another side to that, and it wouldn’t be fair to overlook it, for the sake of dramatic impact. That’s the side of having learned the hard way, just how to understand and manage my issues. How to cope with them. How to offset them. How to integrate them into my life in a healthy way. It’s the side of me being extraordinarily happy in my life, despite all the wretchedness — which has been a direct offshoot of a disciplined approach to my life. By keeping myself on a straight-and-narrow path — the one that works best for me — I’ve been able to transform a ton of terrible stuff into pure joy. Making the proverbial silk purse out of a sow’s ear.

Because I can. I’m autistic. I’m not Wonder Woman, but I do have some pretty super powers, and if I don’t use them for my benefit, what’s the point?

Seriously, what’s the point in me being autistic, if all I have is pain?

There’s a whole other side of it for me, which has been hard-fought — and hard-won.

And that’s the side I choose to focus on. Along with everything else.

Life happens. I get to choose what I do with it.