Consider this to be a rough equivalent of all the “signals” that people pick up from an autistic / Aspie individual:
Let’s say someone is presenting with a whole lot of “interesting” behaviors and characteristics. Like this batch of seemingly unrelated dots:
This is what we start with – just dots, that mean nothing, really
If you don’t understand the context of their situation, you might try to connect the dots in a way that reflects your own confusion — like so. It can sure seem like chaos — especially if you don’t think there’s really any reason, rhyme, or structure to it all.
If you have the expectation of chaos, this is how you can connect the dots
Now, let’s say you get that there is some order to the seeming mess in front of you. Still, if you don’t have a conceptual “template” of sorts, you can end up with this — which is more orderly, but is still abstract and a bit non-sensical.
If you have a somewhat orderly idea of how dots connect, but you see no overarching pattern, this is what you can get
Now, if you DO have a template to understand how the dots all connect, you can find order in the seeming chaos. Like so:
This is what becomes of the dots, if you have a certain pattern
What you need is an understanding that A) the dots are connected in meaningful ways, and B) there’s an actual pattern that can be applied. That same pattern can be used over and over again, even if the dots do show up in different places in the template.
This is what the real pattern is
People on the spectrum are a little like this — we’ve all got these characteristics that don’t make any sense to people who don’t have a conceptual template — or don’t realize there even is one. And just like houses can come in all different shapes and sizes, yet still be houses, people on the autism spectrum can have their “dots” in any number of different places. But we’ll still maintain our fundamental essence and character.
When searching for traits, characteristics, or symptoms of Asperger’s (and the rest of the autism spectrum, to an extent) online, the first–and the majority of–information you’ll probably find focuses on the negative aspects, at least as perceived by the “official sources” and “experts”. It begins to sound like a broken record… “lack of empathy”… “rigidity”/”cognitive inflexibility”… “clumsiness”… “obsessions”… “developmental disability”… “socially awkward”… “inappropriate [fill in the blank]”… “impairments”… “unemployment…”
Good lord. If the “rest of the world” sees us that way, refuses to recognize or acknowledge our positive traits, and treats us according to their exclusively-negative stereotype (if they have even formed an impression of us beyond the “Rain Man” stereotype at all), then no wonder that people on the spectrum experience higher rates of depression and self-harm.
This summer, as part of the construction of a school in the village of Monchy-Lagache east of Amiens in Somme, an archaeological evaluation has – as is required by French law – been carried out . Huge was the amazement, when the archaeologists found a unique cemetery.
Such surveys involve digging trenches 2 m x 2 m and 0,5 cm deep every fifteen meters. The result was the discovery of a huge and unique cemetery, says Richard Rougier, who is scientific and technical deputy director at Inrap-in Picardie, and attached to the CNRS-University of Lille archeology laboratory in Villeneuve-d’Asq. Expected finds will be necklaces and bracelets in women’s graves and scramaxes (throwing axes) in male graves,” says Pascal Depaepe, who is Interregional Director at Inrap in Northern Picardy
Until now four skeletons have been removed for further analysis and the trenches have been closed again. The archaeologists are waiting for a decision from the Regional Direction of Cultural Affairs (DRAC) Amiens, which will decide in late August or early September whether to carry out further excavations.
The trenches cover app. 12% of the surface and the archaeologists estimate that there are about 6-800 graves waiting to be excavated. Given the number of skeletons and the presence of children’s graves, it is probably holding the remains of the population of an entire village. The bodies found are placed at about 1.50 meters underground (which is relatively deep), and out of reach of conventional metal detectors. The discovery confirms that Monchy-Lagache was probably a major Gallo-Roman as well as Merovingian center (AD 400 -600).
The fact that the cemetery does not show signs of ancient or modern looting excites the archaeologists immensely. Neither does there seem to have been any destruction wrought by fighting or shelling during WW1, even though the site is located 14 km south of Peronne.
It’s a social processing condition.
It’s a different way of processing sensory information.
It’s a different way of interfacing with the world.
What isn’t autism?
Autism isn’t a learning disability.
Autism doesn’t mean a low or high IQ.
Autism isn’t a behavioural problem.
Autism isn’t a person trapped inside a mental cage.
Autism isn’t a lack of empathy.
Fundamentally, autism isn’t the enemy.
When you hear about the poor child suffering from autism, you’re hearing a perpetuation of a misleading and hurtful narrative.
We don’t call neurotypical people high-functioning or low-functioning. We don’t look at their intelligence and use it as an indication of how well they are. We don’t assume intelligent equals fine, and unintelligent equals problematic. We look at the whole person.
Autistic people are no less whole. We are no less complicated. If you wouldn’t categorise the majority of the population as high or…
This is what it seems like to me, most of the time
I think I’ve figured out what the deal with neurotypical “small talk” is all about. See Mom and Dad? My cultural anthropology training has come in handy!
In my 4+ decades of actively studying neurotypical / allistic folks, I’ve long puzzled about why people engage in small talk. Who cares about soap operas (on television and in real life)? What difference does it make, if your windshield has pollen all over it? Niceties about this-n-that around the coffee maker… how aggravating! How time-consuming, without any perceivable benefit for me. And sitting through extended accounts of weekend activities just drains my energy – energy I could be using to do something productive. Of course, I smile through it all and do a fantastic job of feigning interest, but it’s not my first choice.
At all.
And yet, despite its very clear miniscule ROI, despite its fruitless frittering away of precious, limited time, when essentially nothing useful is said — at all… small talk prevails. Why?
Why?!
I finally figured it out, over the past few years, in part thanks to the Porges’ “Polyvagal Theory”, as well as my own personal researching and “field” observations of allistic people in action.
Here’s the thing — the neurotypical way of life is intensely anxiety-producing. The world they’ve designed and built centers around myriad anxiety-producing activities, such as setting unrealistic goals and objectives which no normal person can ever achieve. It seems they have a fondness for “pseudo-Darwinian” culling of the herd, and forcing everyone to constantly strive for impossible goals… so that less capable individuals (i.e., less favorable mating partners whose proliferating DNA could weaken the rest of the population) don’t get to occupy positions of power and influence (and possibly get more mating partners). Never mind that Darwin pointed out that adaptation and cooperation are what ensures survival of the species — neurotypical / allistic folks seem to ascribe to a dominance paradigm that excludes anyone who’s not a stellar example of a copulatory partner.
So, playing in their field, according to their rules, is necessarily going to tax and test you — to see who’s the fittest and who will most likely survive… a Zombie apocalypse? getting stranded on a desert island? fabricated teamwork scenarios for a weekly television series? And also to get rid of those who “aren’t up to the test”.
What’s more, the allistic world is heavily weighted towards a GO-GO-GOmentality. Adrenaline rushes. High energy. WooHoo-ness in the extreme. That’s going to take a toll on your nervous system, right there, because you can’t keep burning all your fuel in constant fight-flight-fun mode and never recharge. But the NT world seems centered around depleting every possible resource you have… then hopping everyone up on artificial stimulants, just to “keep up”.
Keep up with what? Oh, never mind.
Anyway, with all the adrenaline addiction and stress and strain placed on the human system, you’ve got a shit-ton of frazzled, anxious, nervous people walking around on the verge of a panic attack. After all, they might not be “up to the test” and get kicked off the island. And they don’t want that.
So, that’s where small talk comes in. It’s not designed to convey any particular information. It’s not about information at all. It’s about:
Testing the relative danger of your surroundings to see if you’re being threatened,
Making sure others know that you’re not weak, but you’re also not too strong, and
Soothing the autonomic nervous system with stimulation of the vagus nerve apparatus.
To whit:
Testing the relative danger of your surroundings to see if you’re being threatened by chatting about some lame subject, allows you to gauge the relative “stability” of people around you. It lets you see if they’re feeling good or aggressive or angry or tired or frustrated or some other way that could impact you later. Exchanging a mindless, “Hey, how ya doin’?” with no expectation of a reply other than, “Good, thanks – yourself?” serves a very valuable purpose. You can detect the general mood and stability of a person by how they respond to you, and you can either go shields-up or take the offensive, or beat a hasty retreat, based on the mood you detect in the other person. Small talk, in this case, is about sending out “feelers” to see what the person approaching you is likely to do / say / feel / respond with.
Making sure others know that you’re not weak, but you’re also not too strong is crucial. Because you have to show that you’re a capable and well-integrated part of the environment you’re in. You don’t want to come across as a sappy little milksop who’s just going to bitch and moan about your life, but you also don’t want to present like a hyper-dominant goon who’s difficult to interact with (and work with). You don’t want to brag and posture, because that can put people off. But you also don’t want to look submissive and easily bullied. It’s all about establishing that you’re dominant in your own life, but that you won’t encroach on others’ quadrants. What’s more, you want to show your humanity — struggles with unruly children over the weekend, hassles with house repairs, negotiations with contractors and other handyman types. Small talk is a way of cementing your public persona in the midst of others who are looking for how best to interact with you.
Soothing the autonomic nervous system with stimulation of the vagus nerve apparatus is probably the biggest piece of it, though. In the midst of all our anxiety and nervousness, we have a way to calm ourselves down and stimulate the other side of our autonomic nervous system that helps us rest, catch a break, and digest that big meal we’ve just eaten. It’s the vagus nerve — or nerves, depending who you talk to — and that longest nerve in the body travels from the brain, down the center of the body, and into the gut, where it spreads out in all directions. It goes directly past the esophagus and vocal chords, and when we talk or sing, it gest stimulated — and kicks in a process that soothes our frazzled nerves. It’s one of the things that makes singing or humming soothing to people. And in my observation, it’s what turns my extremely nervous friends and family into chatterboxes when they’re freaked out.
So, small talk actually does serve a purpose in the dominance-driven, anxiety-producing pecking order of the neurotypical / allistic world. In a way, it’s like allistic stimming. Yeah – that’s it, exactly. But unlike autistic stimming, they insist that everyone else has to join them.
I just wish they’d leave me out of it, and let me live my life in peace without needing to take part in this game of theirs.
When it comes to online discussions about autism issues, I regularly interact with two realms.
The first realm is one we’re all familiar with: the day-to-day articles and conversations and debates that take place regarding a wide range of spectrum issues. Causation, research, personal stories, opinions … just the usual autism topics that you come across as you scroll around blogs, and Twitter, and Facebook.
The second realm consists of an invisible community. It’s made up of people who are absorbing every discussion, every debate, every article … yet they are not participating, not sharing their own ideas. They’re just there, quietly and attentively taking it all in.
This second group is made up of suicidal autistics.
This is not just an invisible community, it’s a large one. One recent study found that two thirds of spectrum-diagnosed adults surveyed had contemplated suicide; 35 percent had actually made plans or an attempt.
And given the huge number of autistics who go undiagnosed, due largely to gender and racial bias structured into the diagnostic process, the rates of suicidal thought and action may actually be much higher.
First, I need to say that I hate the phrase “special interest.” It sounds demeaning or patronizing. All I can think of is a doddering old great aunt looking over my shoulder at my stamp collection and saying, “well, isn’t that special.”
I’d much rather use “obsession,” or if that’s too extreme, then “specialized interest,” which is more precisely descriptive. But the term most often used in the ASD community is special interest so I’ll use that here, cringing every time I type it.
Okay, with that bit of editorializing out of the way, we can talk about a topic dear to most aspies’ hearts: the special interest. According to the DSM-IV diagnostic criteria for Asperger’s Syndrome, having an “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus” is a core symptom of AS.
I hadn’t intended to address The Empathy Question just yet. Since my formal diagnosis, I have shared my blog more widely with people I know, and in particular many of my non-autistic friends. I’d like to educate, inform, (hopefully) entertain a little, and basically not get too political for the time being. It was my intention to pootle along, writing whimsically about my love of green spaces, my fascination at the structure of leaves and flowers, the way the sky sparkles for me and whatnot, interspersing this perhaps with the odd discussion of social interaction faux pas.
But The Empathy Question has been bothering me, and it’s an itch I must therefore scratch.
One of the things that increasingly frustrates me about media explanations of autism is the tendency to describe the condition purely in terms of visible behaviour, and nothing more. Time and…
Getting answers sometimes is like talking to a brick wall
For the record, if you ever want to ignite a Twitterstorm, tweet something to the late-diagnosed Autism Spectrum world about how women (and others) need to be sheltered from the hazards that come with an autism diagnosis.
That’s what I did earlier today, and lemme tell you, we Aspies and Auties are not shy at all, when it comes to making our sentiments known about being denied an Autism Spectrum diagnosis “for our own good”.
It was actually quite fun. Many, many of us are on the same page (though it’s not clear if the researchers who think we need to tread carefully with regard to autism diagnosis got the memo we’re all writing our lives as examples).
The story that kicked it all off is a piece in Spectrum News – The Lost Girls. I was reading through it and came across a couple of choice tidbits:
Our intelligence can work against women on the autism spectrum
That was a “no kidding…” moment, if ever there was one. People on the autism spectrum are by nature excellent mimics, and we can be extremely smart. Who wouldn’t learn quickly from countless experiences of failed social interaction, what to do and what not to do? Seriously, people, who wouldn’t? (Maybe people who don’t have to…)
And this little gem:
The second one really jumped out at me, partly because Simon Baron-Cohen was referenced (and I have serious logic-based and personal differences with much, if not most, of what he’s produced over the years – and what he’s done hasn’t helped a whole lot of us), partly because every . single . word . stood out as emblematic of the alarming biases still held (apparently) by so many researchers and recognized autism experts.
If anything, denying anyone who’s on the spectrum a right and proper and accurate autism diagnosis is cruel. It’s not protecting us from something undesirable. It’s not sheltering us from the slings and arrows of the world. It’s keeping from us the most core, most essential, most foundational aspect of our Selves. And it’s denying us our community.
That, my friends, is cruel, in the same way that intense, PTSD-producing ABA and “behavior modifying” shocks are cruel. It’s “for our own good”, apparently. It’s “keeping us safe”, according to some many clinicians I’ve encountered and heard about. It might not seem like a horrible thing to do, to an intellectually distanced, objectivity-aspiring researcher, but to those living with the practical, logistical issues of the autism spectrum each and every moment of our waking (and sleeping) lives, refusing us an autism diagnosis is just cold.
And yet, the neuro / psychological / clinical world persists in the practice of either mis-diagnosing us, or refusing to diagnose us, period. Weirdly, just this past week, I was talking with a clinician who is familiar with my neuropsychological profile. Back in 2008, when I was seeking an Aspergers diagnosis, and also dealing with a number of other “confounding” issues in my life, I underwent a series of neuropsychological tests. They took a few days and they measured things like my short-term working memory, how susceptible I am to distraction, my thought process, my self-perception, how well I fit stuff together, my processing speed, etc. From what I’ve heard about others’ AS assessments, my scores were consistent with impairments very common in Aspergers/Autism. But the clinician I was working with then wasn’t looking for AS. He was looking for something else. And you generally find what you’re looking for — especially if you’ve been plying your trade for close to 40 years.
Anyway, the clinician I was talking to this past week is familiar with my profile. She’s read my fairly hefty file. She’s talked with me a bunch of times. And I’ve been considering asking her to assess me, although she apparently has only ever assessed young children (major red flags fly high on that fact).
And we got to talking about insurance, and she told me she’s reluctant to assign diagnoses to people who don’t “need” them, because it gets you “slotted” into a certain insurance profile that then sets you up to be “managed” by the insurance companies in all their (complete dearth of) infinite wisdom. I can totally see that. Insurance perils are a big reason I have not more actively pursued a formal diagnosis, and I am almost OCD-level meticulous about keeping my personal details out of the clutches of insurance carriers.
The thing is, though, as we were talking, I got the impression that she thought I would internalize a diagnosis in unhealthy ways. She talked like I would turn a DX into a defining feature of my personality and let it limit me… rather than using it as basic information as a springboard to greater self-knowledge and more effective self-management. She seemed to think that diagnosing me with anything more than “adjustment issues” was going to set me down a path of limitation and disability.
We never talked specifically about Aspergers, although the times that I have interacted with her, I have masked a lot less than usual, just to see if she would pick up on anything and mention it to me. I regularly have people who are “hip” to Aspergers chatting with me about it, like I’m supposed to know a thing or two. They never come right out and ask me — it’s always oblique, always cautious. But they broach the subject with me.
Of course, we never get right into the nitty-gritty of my experiences, because they never come right out and ask me, and I’m too literal to read into their inferences in the moment. But they do mention it. And if this clinician hasn’t mentioned it by now, after seeing me in action a number of times, then I’m probably not going to push the issue with her.
Perhaps.
Anyway, all this talk about diagnosis and the perils and limits thereof, has me baffled about the clinical attitude towards diagnosis. Why wouldn’t someone want to DX a person with Autism or Aspergers? Why would they choose just about anything else — OCD, bipolar, borderline personality, oppositional-defiant, eating disorder, depression, and so forth — rather than cutting to the chase? Why? What’s so god-awful about Aspergers / Autism, that clinicians feel such a pressing need to shield us from that “label”?
I honestly can’t figure it out. It could be that:
Clinicians truly believe that Autism Spectrum Conditions are a disorder and a sign of developmental delay, which puts us at a disadvantage in the world, when it comes to self-advocacy and self-determination.
Clinicians genuinely think that AS is an epidemic pox upon the human race, which should be eradicated through genetic selection and treatments.
Being DXed as Autistic is a raging black mark against us in clinical and social terms, effectively stripping us of our rights and autonomy in medical care, social standing, and perceived ability to participate as fully functioning adults.
Insurance companies will flag us as “high maintenance” and force us (via their defined standards of care) to go on heavy-duty meds to manage our condition.
Clinicians have no idea just how much it means to us to have the right objective information about our makeup, and they judge our ability to deal with it according to neurotypical lines — the very lines that consign us to marginalized prejudice and dismissal (which isn’t at all how we think about ourselves and others like us).
Nobody realizes the essential nature of our pattern-driven thinking, and they have no clue just how critical it is for us to have that most intimate key to understanding our true natures.
There are more reasons, I would imagine, but these are the main six I can think of, right now. It’s been a long day, and my head is spinning from all the activity.
It’s been very good activity. These are things we need to think and talk about — if not with the clinical / medical community, than at the very least amongst ourselves.
Autistic Ultra 