A Modest Bayesian Proposal: What if the #autistic developmental path is a cumulative process?

Transparent Polycarbonate Construction Layers
layers upon layers upon layers… they all make us who we are

For those who don’t read about these sorts of things, there’s a method of updating a hypothesis (what you suppose might be happening) based on ever-increasing amounts of data. It’s called “Bayesian inference“, and it’s all about adjusting, based on a continuous flow of additional input/data which can alter your view.

You think something is the case…

The driver ahead of you is not moving, when the light turns red. So, you think they’re not paying attention.

Then you get more data

You see their head is lowered – they’re not sitting up straight

and you realize something else might be the case…

Maybe they’re fiddling with their radio, or they dropped something on the floor of their car. 

Then you get more data,

You beep the horn, but you get no response. They are still not moving.

and you realize something else might be the case…

Are they sick? Have they collapsed?

And then you get even more data,

You get out of your car and go tap on their window – sure enough, they are slumped over and unresponsive.

and you realize something else might be the case…

They’re also convulsing. They’re having a seizure. This changes things entirely.

In the space of a few moments, maybe a few seconds, your whole perspective has changed. And that sort of thing happens to autistic people countless times in our lives – sometimes in a week, or a day.

Bayesian inference is a process of refining your opinions and outlooks, based on ever more data. And the process of doing so really mirrors what I’ve seen myself and many other autistic folks do over the course of their lives.

I personally believe that autistic / Aspergers folks aggregate our knowledge stores from observation. We don’t just unconsciously “pick up on signals” from the rest of the world around us and unquestioningly develop as though we’ve always known those things, like the rest of the world seems to. We actually pick up signals in specific, focused ways (being strongly influenced by our sensory processing variability), and we consciously work through that input to update our knowledge stores about what things mean, and what we should do about them.

We autistic folks actually think about our world. We actually “do science” when we interact with it. I’m not just talking about Aspergers folks who are “high functioning”. I’ve read accounts by “severely autistic” (sorry) folks, who talk about the same process — studying their world, reaching conclusions, observing more, updating their conclusions, and so forth.

What we know and what we do is the product of a “lacquering” type of process, where successive layers of additional information are added, in sometimes painstaking, minute detail.

That’s definitely how my mind works. And I firmly believe that’s why it’s taken me so danged long to get my act together and get the hang of “adulting”. My life has been an extended process of trial-and-error, with each new batch of errors adding to the overall data stores I had about whatever I was doing.

Sometimes it takes a while to make all the right mistakes. But I seem to have made more than my fair share. And that means I have a truly impressive “toolbox” of experience to draw from. At this point in my life, that’s a plus. Because this is when I need all those tools — when the rest of the world is collapsing around me, and I’ve got to make arrangements and manage things – preferably with a narrow margin for error.

It’s so much easier for me now, to figure stuff out, because A) I’ve learned from so many mistakes, and B) I know exactly how to make mistakes, learn from them, and move on. I’m not as derailed by many folks, by my screw-ups. So, I screwed up. What else is new? Main thing is to not get down on myself about it, and keep moving.

But back to my original assertion: that Autistic people develop through Bayesian Inference.

If this is the case (and I believe it is), then our development needs to be aided by a continuous stream of additional data, adding on to what we think we know, correcting our outlooks, and moving us forward. Assuming that we know things “we should know” is no good. We need active input. We need to do science. Even if the information we’re receiving isn’t fun or easy to talk about (relating to our physical needs, fluids, uncomfortable emotions, awkward situations, etc), we still need to be exposed. We need to be taught — and in an objective and scientific manner.

It might sound uber-nerdy, and maybe it is, but if that’s what it takes to train us and refine us and bring us along into full participation in the world, then so be it.

Enough of the “autism cure” talk. Enough of the judgment. We’re just different. We’re built differently. We have more synapses (don’t be jealous, all you NTs). We make more connections. We’re excruciatingly connected to the world around us, even if the rest of the non-autistic world can’t tell.

What — just what — might happen, if we accepted that, and worked with it as a strength, rather than something that needed to be eradicated from the planet?

What indeed…

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Ugh – wish me luck – lots of phone calls today.

antique phoneMy family is not making good decisions about their medical choices.

So, I have to get on the phone today and navigate a medical system that’s vast and overwhelming.

Anxiety. Borderline panic. I don’t do well with phones, to begin with, but these circumstances are even more stressful. It’s literally life-and-death.

Plus, it’s medical. And I’ve talked at length about how I feel about dealing with doctors. Long story short, I’m not a fan. I am SO not a fan.

But it’s got to be done. People in my family are not being smart. They’re not being logical. And their fears are taking control.

I can’t let this happen. I have to get on the phone. Make a lot of calls.

Ugh.

My auditory processing is an issue. I have a hard time hearing what people are saying, and I have a hard time piecing it all together as they’re talking. I have a hard time making notes, and I have an even harder time teasing out what my notes mean, after I’m done writing them (and have hung up the phone). The more stressed I become, the harder it is for me to hear and understand.

Too bad. Suck it up. Time to use my stoic training for the higher good.

I’ll reserve a conference room at work and “camp out” there till it’s all settled and taken care of. Just take things systematically, one at a time. Asking all the questions I’m perfectly entitled to ask. And remember that when it comes to this complex stuff, most “civilians” are at a loss. So, asking lots of questions is a good thing, not bad. And in any case, I’m no worse at this than any other non-medical person.

If all goes to plan, by the end of the day, I’ll have extensive information about who does what, in what order they do it, who needs to be involved, and when the next appointment is. I have my script – I wrote it down last night. I have been practicing, rehearsing in my head – over and over and over. I have to do this. It’s not optional.

Some things are more important than avoiding panic.

Some things are more important than feeling safe.

Sometimes I just have to put all that aside, focus in, and get moving in the right direction.

This is one of those times.

Meh, come to think of it, I’m often panicked. I usually walk around with a sick, sinking feeling in my gut… convinced I’m going to screw everything up… but I live my life, anyway. Not to my specifications, but I get it done.

This has to be one of those times.

I’m goin’ in…

Echoing. Echoing.

vibration concentric circles of different colors

Something remarkable is appearing before my eyes.

When I write the way I think, my paragraphs have a fair amount of echolalia.

This is happening in my book Into the Deep.

I repeat things – say them either the same way, or in slightly different ways. But I repeat phrases. Sentences. And it serves a purpose. It serves as a gradual bridge from the feeling of one thought to the next, from one concept to the next.

It’s very synaesthetic. Very sensory. And it helps with the flow.

I’ll write more about this phenomenon later, but for now, let the record show that, when left to my own devices, when I don’t suppress it, echolalia shows up in my writing.

Maybe this is actually a more autistic way of writing, than how I was taught to write. Maybe this is me expressing myself in my naturally occurring state.

It’s more private than blogging, where I’m very cognizant of others reading and reacting to what I write. Writing a book is a private thing, a secret thing. For me, it’s an autistic thing.

So, why not write in a (my) naturally autistic style?

How interesting…

Why #Autism / #Aspergers Diagnosis is so critical for women and girls – “Diagnosis” – A Year In – Colouring Outside The Lines

I’m sharing a great piece about the impact of an autism diagnosis for a 9-year-old girl and her family. Very hopeful!

A year ago, we received the official report; our quirky, funny, razor-sharp daughter was autistic (with a side-helping of ADHD just to keep us on our toes). So, what did that piece of paper change?

Put simply, everything and nothing.

It did not change the unconditional love we have for our daughter, it did not change our hopes & dreams & aspirations for her (and those she has for herself). She is as beautiful and talented as she was ‘before’, her eyes are just as sparkling blue and her laugh just as contagious. The moods are just as tricky to handle, the need for routine remains, she continues to battle through each day and we remain the proudest parents on the planet. It was not a magic wand, it does not guarantee lifelong support and it did not suddenly make the world a more autism friendly place but…

Read the rest of this hopeful post: “Diagnosis” – A Year In – Colouring Outside The Lines

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.

Asperger’s / autism and vulnerability

I can so relate to so much in this post.

the silent wave

One of the attributes that I have always despised the most is that of my vulnerability.  Sometimes I feel like I’m standing naked in the open, everything exposed for the world to see–and sneer and jeer at.

Not pleasant.  Not comfortable.

It’s been more than 10 months since I snuggled into my spot on the autism spectrum, but although my sense of validation and my self-confidence have shot through the roof, the vulnerability hasn’t budged. Not that I magically expected it to, but maybe a part of me was wishing upon a star, holding out for the impossible.

The Asperger’s/autism realization, though, has brought me a streak of light, of peace.  Although nothing has changed (why would it?  I’m still me 🙂 ), I’ve been able to decode my life and answer those enigmatic conundrums.  I believe that half the battle (any battle) is knowing why.  Why are we the…

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Autistic resilience: talking up competence.

“when applied to autistic styles of perception in a neurologically biased world. It’s the difference between playing poker or chess – in the former the cards are concealed during play and in the latter the whole state of play is visible throughout. In an NT world we’re playing poker.”

That’s it exactly. Great post!

The other side

Version 2(Work in progress on the theme of resilience, © Sonia Bouè 2017)

This week has been rocky. I want to talk about anxiety.

Anxieties collide sometimes don’t they? Stuff can accumulate and escalate. World events, a health glitch, a seriously upset neurotypical (NT) friend. (For the sake of clarity. I should stress here that my friend was not upset with me but rather shared their distress with me).

For an autistic person this can rapidly begin to feel ‘disproportionately’ dark.

What I mean is that for autistics the confluence of events within a short time frame is often what proves disorientating, and I’m trying to analyse the cause. I think that probably some of our anxieties are related to what I think of as imperfect information in the moment. I find this a useful phrase when applied to autistic styles of perception in a neurologically  biased  world. It’s the difference…

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Ten Things Autistic Kids Pick Up Faster, Better, and With Less Trauma If They Aren’t Bullied Into Learning Them

This is a fantastic post. I’m fortunate to have not yet read the article that gave rise to it, but each of the points is right on target.

Autistic Academic

[UPDATED to include links to other rebuttals of this piece.]

In a previous post, I said that when people who support the abuse, bullying, and belittlement of autistic people “praise me for my accomplishments … it feels like a slap in the face.  You’re proud and impressed because I got here in spite of obstacles you created and that you support?

Object lesson: a piece posted today at Autism Daily Newscast and penned by Karen Kabaki-Sisto, titled “10 Perks Kids With Autism Get From Bullying.”  I won’t link to ADN’s site, but I have saved the article in .pdf format, which you can access here.

As an autistic adult who is spending thousands on therapy per year to treat the PTSD caused by childhood bullying, I’d like to do two things.  The first one is to unleash a barrage of swear words not limited to the languages…

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person standing along a fencerow with a sunset in the distance

I’m at War With Myself – Parts of My Autism People Can’t See

YES to so much of this. Seriously, there’s just no point to me disclosing any of this to people. If they know, they just treat me like I’m impaired and can’t fend for myself. If they don’t, they just expect me to go along with everything they do, to mirror their activities and interests… and like it. Augh! Please. Small wonder, I isolate. I just can’t deal with all the demands… and the lack of support.

Alexithymia can really come in handy when you’re #autistic

street lights blurred by a rainy window
Sometimes it helps to not see everything clearly.

So, there’s a medical emergency in my family.

The CT scan “found something”, and additional tests and a biopsy are pending.

Some members of my family want to do the biopsy and further care at a local medical center, where another family member went through years (years!) of mismanaged care, and it cost her dearly. She’s not even 30 years old, yet, and she has no colon. It could have been avoided, I’m positive. Because the medical center where she went has a reputation for screwing up.

On the other hand, there’s a top-line medical facility that’s one of the best in the nation just 1.5 hours away by car. They have the equipment and the personnel and the expertise to handle this new emergency. They don’t have a reputation for screwing up.

It’s been a multi-day struggle to get people to see that it makes more sense to go to the better facility, even though it’s a little farther away, and it’s in a city (versus the countryside). But after days of calling back and forth, checking facts and figures, trying all sorts of different angles… success. The biopsy will be performed at the excellent hospital, not the sh*tty one.

And here’s where alexithymia comes in handy.  Because for days, I haven’t had a clue what I’m feeling. I’m not sure I’ve felt much of anything. There have been stretches where I’ve broken down and cried (of course), but for the most part, my judgment has not been clouded by a lot of emotional reaction.

Some would say, I’m stunted. That I’m “not in touch” with my feelings. They would call it unhealthy, pent-up, repressed.

I’ve got news for them — it’s only a matter of time, till it all comes clear to me. And it shall. But for now, I’m able to think clearly, reason through different criteria, make logical arguments, and keep a level head in the midst of some very challenging conditions.

And that’s not a bad thing.

It helps that I don’t realize how confused and terrified I am.

It helps that I’m “not in touch” with how angry I am with some of my family.

It helps that I haven’t yet processed my frustration and irritation and sense of helplessness from afar.

All this helps me keep my head clear and “work the problem” with logic and fact-finding, which is exactly what needs to happen, right now. Not a lot of folks in my family can do that. But I can.

Eventually, it will all catch up with me. I will probably feel the brunt of this, a few weeks or months after things have resolved (in one way or another). And then I will shutdown… or meltdown. But it will all come crashing in on me. There’s no doubt about that. That’s when I’ll deal with all of this.

Just not yet.

So, maybe people need to loosen up about what the “healthy” way to handle emotions is. Maybe people need to realize that alexithymia serves a purpose — a very valuable purpose — that actually serves the greater good. Some of us need to keep our heads on straight, while everything is falling apart.

After everything has settled out, and we have some distance, we can figure out what we’re feeling.

And we do.

I certainly will.

Just not yet.