The Boy Whose Brain Could Unlock Autism

December 15, 2013 10:24 AM

Rather than being oblivious, autistic people take in too much and learn too fast. While they may appear bereft of emotion, the Markrams insist they are actually overwhelmed not only by their own emotions, but by the emotions of others. Consequently, the brain architecture of autism is not just defined by its weaknesses, but also by its inherent strengths. The developmental disorder now believed to affect around 1 percent of the population is not characterized by lack of empathy, the Markrams claim. Social difficulties and odd behavior result from trying to cope with a world that’s just too much.

By metafilter's own Maias, via.

posted by latkes (22 comments total)

I read this a few days ago and found a lot of value in it. The research on depakote is interesting but too specific to draw any etiological conclusions, and the idea that those with severe autism could, with adequate treatment, not only achieve higher functioning but outperform neurotypical people is vaguely worrying for a few reasons...but both of those criticisms are addressed in the article, even if not in great detail.

What's really valuable is the concept of the "intense world." The idea that those across the autistic spectrum experience sensations more intensely, and become overwhelmed by sensory overload, losing out on the ordinary developmental trajectory as a result, makes so much sense. There is so much potential there for better treatment and assistance for anyone on the spectrum if the reigning ideas move away from "too little sensation/empathy" to "oh, you're overwhelmed by sensory input and empathy. okay." I'm really hoping for more research in that direction.
posted by byanyothername at 10:38 AM on December 15, 2013 [12 favorites]

I especially liked this note near the end: The secret-ability idea also worries autistic leaders like Ne’eman, who fear that it contains the seeds of a different stigma. “We agree that autistic people do have a number of cognitive advantages and it’s valuable to do research on that,” he says. But, he stresses, “People have worth regardless of whether they have special abilities. If society accepts us only because we can do cool things every so often, we’re not exactly accepted.”

It also left me wondering if families with a high likelihood of autism or early signs might benefit from intervention to reduce complexity like a nursery decorated in one pale fabric, fixed routines and repetitive sounds etc.
posted by viggorlijah at 10:48 AM on December 15, 2013 [5 favorites]

I try to liken my (milder) sensory issues to pain: If you stub your toe on a piece of furniture and then immediately afterwards someone says they love you, what is that going to mean? You're going to be like, "Yeah, whatever, OWOWOWOW, gimme a minute." Then imagine it doesn't stop. Your brain can only do so much at a time, and the world demands a lot of processing power. Childhood especially.
posted by Sequence at 10:49 AM on December 15, 2013 [10 favorites]

I was classic high-functioning autistic spectrum as a kid (and still in many ways, but it's moderated after a lot of life experience), and an "intense world" type theory has been my go-to internal explanation for a while.

The idea of shutting down because of an overload of emotion rings very true, and is part of how I understand the old "refrigerator mother" idea - i.e. what to neurotypicals are manageable problems at home with somewhat sad or angry or burnt-out parents become overwhelmingly negative feelings for autistic spectrum kids. Eye contact is someone else's soul flooding in like a tsunami, the good and (often) the bad. And the way NTs generally put up a positive exterior over negative emotions creates a visceral dissonance, like lies blasted through a megaphone. Forced laughs are a hundred nails on a chalkboard.

Escape starts to seem like the best solution, but again it's not too little empathy, it's too much. It's also why I love animals (at least mammals), because their actions are universally much more "in tune" with their emotions, positive or negative. None of the cognitive/emotional dissonance.

Highly empathetic/emotionally aware people are much easier to deal with.
posted by crayz at 11:14 AM on December 15, 2013 [66 favorites]

After my medication poisoning ten years ago, one of the effects of the resulting brain damage was inability to filter - every input prioritized as 'red alert'. The world was so overwhelming that merely the sounds of traffic as I attempted to walk to the corner store would result in me crouching in a 'pre-natal rock' trying to block out everything. During my recovery, therapy methods for autistics where used due to similarities in interacting with environments. Even now, when discussing ongoing cognitive and social issues with my doctor, he often uses language tied to autism (e.g. "stimming").
posted by _paegan_ at 11:24 AM on December 15, 2013 [9 favorites]

related, references linked article: Tourette’s Adventure of the Mind

A few days after surgery I got Tourette’s syndrome. Adult onset Tourette’s is rare, and usually happens in late middle age, like it did for me. Like Jeff Zucker’s (CNN president) recent Bell’s palsy, it is neurological and should fade away in months or maybe much longer. There are mostly sudden movements (tics) of the head and shoulders, odd facial expressions, grunts and squeaks, and a need to squirm. Mornings are better and Sleep is hard. Some days are much better. The symptoms are hardly a disability. I now tell people to expect it, and there is no pain. 10% of those with Tourette’s swear suddenly. I do not. But I think I understand why they do.

posted by the man of twists and turns at 11:57 AM on December 15, 2013

The lack of filter aspect makes me think of the filter-removing qualities of psychedelics. I wonder how similar the experiences are.
posted by Joe Chip at 12:25 PM on December 15, 2013 [2 favorites]

I thought the overwhelming input aspect of autism--"drinking from a firehose", so to speak-- had been the prevailing understanding of how the disorder works for a while?
posted by magstheaxe at 12:40 PM on December 15, 2013 [5 favorites]

i know that when my daughter was younger that she could overload very easily - she's got better control over her reactions now and i also think she's developing the ability to focus on what's important and filter out other things - perhaps her drugs have helped her with this

there are several autists who have written that they have trouble filtering things out and get sensory overload, so i think there is a lot to this

the lack of empathy thing really bugs me - it's my belief they have empathy, but they don't often know how to translate that into appropriate feelings (there was a time when my daughter wasn't real clear on things like whether she was sad or angry) or appropriate social interaction
posted by pyramid termite at 12:43 PM on December 15, 2013 [1 favorite]

magstheaxe, to my understanding, it's been an element of it for a very long time but there seems to have been a lot of people continuing to make the "lack of empathy" distinction from people who just have sensory processing issues, rather than just seeing it as an outgrowth of the sensory processing problem. This seems to indicate that maybe the whole "developmental disorder" nature of it could just be that it's hard to learn anything when you're being bombarded like that. Not to dismiss the importance of trained OTs, but among other things it might speak to the idea that we should be teaching all parents to attend to their children's sensory diets as much as to their nutritional ones.
posted by Sequence at 1:05 PM on December 15, 2013 [4 favorites]

I thought the overwhelming input aspect of autism--"drinking from a firehose", so to speak-- had been the prevailing understanding of how the disorder works for a while?
posted by magstheaxe at 3:40 PM on December 15 [1 favorite −] Favorite added! [!]

Same here. Otherwise how to understand events like a "caring Santa" where lights are turned down, music eliminated, escalators shut off, etc., so kids can visit a Santa Claus without being overstimulated. I admit I don't follow autism issues real carefully but from an outsider perspective, I thought that it was the dominant theory at this point. And yes, things have certainly changed since I read "A Child Called Noah" a few decades ago, which, if I recall correctly, referred to but disputed the "distant mother" theory.
posted by etaoin at 1:43 PM on December 15, 2013 [2 favorites]

While I'd taken it as the dominant theory, I haven't seen it as a theory that has become ensconced as -the- theory. So I'm happy to see further efforts toward that end.
posted by solarion at 1:54 PM on December 15, 2013 [2 favorites]

The article also goes into the way "empathy" can refer to both "ability to think like other people" and "ability to feel for other people." It's quite possible to have difficulties with one and not the other, and if one is already bombarded with sensory overstimulation and the emotional-intuition flavor of empathy, communication can become an enormous task. From an outside perspective, it's easy to see how the shutting-down, avoidance of eye contact, etc. could translate into thinking someone's sensory and emotional experiences are dampened, when really it's a response to the completely opposite thing.

The lack of filter aspect makes me think of the filter-removing qualities of psychedelics. I wonder how similar the experiences are.

That is a fascinating thought. It's a thread I'm not ready to pull on yet, but I'm looking at it and kind of nodding. There may be similarities. At the same time, imagine trying to function in that state every day; the strain of struggling to keep up with others could turn it inside out.
posted by byanyothername at 2:04 PM on December 15, 2013 [4 favorites]

I thought the overwhelming input aspect of autism--"drinking from a firehose", so to speak-- had been the prevailing understanding of how the disorder works for a while?

The article says that the idea that social and behavioral problems are *caused* by the "intense world" autistic children experience is new and not universally accepted.
posted by Pruitt-Igoe at 2:06 PM on December 15, 2013 [1 favorite]

That's what I'm getting at, byanyothername. It can be enlightening to switch off the filters every now and then, but to never be able to switch them on would make functioning in this world very difficult. It's like the sci-fi/fantasy trope where someone becomes telepathic, and they're overwhelmed by all the dissonant thoughts of others compared with their outwards actions.
posted by Joe Chip at 2:14 PM on December 15, 2013 [2 favorites]

"filter" is a metaphor. Things are "filtered out" not by being discarded but by being "understood." Decisions have been made in advance as to what is important, interesting, unusual. Things fit in the way you've learned to from others.

Imagine everything being unique, not knowing if it's pleasurable or painful or threatening or promising. Imagine not knowing if something should be foreground or background.
posted by Obscure Reference at 6:29 PM on December 15, 2013 [1 favorite]

It's dreadfully tempting to think "my kid doesn't have a deficit, my kid has a super-brain that others just don't understand". It must be well-nigh irresistible for someone like Markram who thinks the world doesn't sufficiently appreciate his own unique geniosity.

I have great sympathy, but Markram should not be allowed to muddy the waters with his own special brand of guff.
posted by Segundus at 12:27 AM on December 16, 2013 [2 favorites]

Has anyone done some testing with Noise-cancelling headphones? At least they would be some kind of a filter.
posted by Gungho at 7:27 AM on December 16, 2013

"Has anyone done some testing with Noise-cancelling headphones?"

Everyone on the spectrum is different. I know some folks who swear by noise-canceling headphones, but they don't work for me, which sucks, because distracting noise also doesn't work for me. I was nearly driven to distraction the other day, because they guy sitting next to me at work kept quietly humming to himself. (Most noise-canceling headphones don't totally obliterate external sounds. USually, I can still hear the 'cancelled' noises, just very faintly. And that can be worse. I am driven crazy by super-quiet, mumbly sounds.)

When I complain about this, friends urge me to listen to white noise, but I can't work while doing that. I can filter out some environmental sounds (not all—a toilet that won't stop running makes my head explode), but not if they're right in my ear. Music doesn't work either. I don't even get the concept of background music. If music is playing, I have to consciously listen to it. (I'm always aware of soundtracks in films.)

When I've tried noise-canceling headphones and earplugs, I've never been able to tolerate them for long. First of all, they heighten my own body noises. I can hear myself swallowing (and sometimes even my heartbeat), and that's way too distracting for me to handle. Also, the sensation of something stuck in my ear bothers me.
posted by grumblebee at 7:57 AM on December 16, 2013 [4 favorites]

Sometimes the distractions don't even have a physical component. Could be a stray thought that cascades and gets followed. It takes awareness, practice, and discipline to let them go.
posted by ZeusHumms at 8:48 AM on December 16, 2013 [1 favorite]

I have a lot of difficulty believing that people on the spectrum are actually more emotionally attuned and empathetic. That just is completely out of line with my experiences with such individuals I've known very well, including my brother. They tend to have difficulty reading others' emotions and picking up on social cues.
posted by timsneezed at 5:09 AM on December 17, 2013

Following up on my previous comment, in regards to empathy. When one is so overwhelmed by the world, when all the information is coming at you with top priority, it's really hard to even sort the data quick enough to realize one is supposed to respond empathetically. When one is focused upon NOT running wailing from the room to find a quiet closet, another's pain isn't so easily noticable. But I didn't stop being a caring and kind person, I just couldn't express it in the expected time-scale.
posted by _paegan_ at 8:39 AM on December 17, 2013 [1 favorite]