The boy whose brain could unlock autism

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SOMETHING WAS WRONG with Kai Markram. At five days old, he seemed like an unusually alert baby, picking his head up and looking around long before his sisters had done. By the time he could walk, he was always in motion and required constant attention just to ensure his safety.

“He was super active, batteries running nonstop,” says his sister, Kali. And it wasn’t just boyish energy: When his parents tried to set limits, there were tantrums—not just the usual kicking and screaming, but biting and spitting, with a disproportionate and uncontrollable ferocity; and not just at age two, but at three, four, five and beyond. Kai was also socially odd: Sometimes he was withdrawn, but at other times he would dash up to strangers and hug them.

Things only got more bizarre over time. No one in the Markram family can forget the 1999 trip to India, when they joined a crowd gathered around a snake charmer. Without warning, Kai, who was five at the time, darted out and tapped the deadly cobra on its head.

Coping with such a child would be difficult for any parent, but it was especially frustrating for his father, one of the world’s leading neuroscientists. Henry Markram is the man behind Europe’s $1.3 billion Human Brain Project, a gargantuan research endeavor to build a supercomputer model of the brain. Markram knows as much about the inner workings of our brains as anyone on the planet, yet he felt powerless to tackle Kai’s problems.

“As a father and a neuroscientist, you realize that you just don’t know what to do,” he says. In fact, Kai’s behavior—which was eventually diagnosed as autism—has transformed his father’s career, and helped him build a radical new theory of autism: one that upends the conventional wisdom. And, ironically, his sideline may pay off long before his brain model is even completed.

Just to survive, you’d need to be excellent at detecting any pattern you could find in the frightful and oppressive noise. To stay sane, you’d have to control as much as possible, developing a rigid focus on detail, routine and repetition. Systems in which specific inputs produce predictable outputs would be far more attractive than human beings, with their mystifying and inconsistent demands and their haphazard behavior.

This, Markram and his wife, Kamila, argue, is what it’s like to be autistic.

They call it the “intense world” syndrome.
The behavior that results is not due to cognitive deficits—the prevailing view in autism research circles today—but the opposite, they say. 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.

the rest of this article>>> https://medium.com/matter/70c3d64ff221

All stuff they could have learned by reading posts here.

I am so underwhelmed by autism researchers who seemed awed by themselves when, after years of observing autistic children, they discover something about autism that ADULTS with autism could have TOLD them YEARS AGO.

I can't get through an article that long with the kids awake.

But I do want to read it-- I think I have read it or something like it before, but it would have been several years ago.

I realize the Intense World Theory isn't particularly accepted-- or particularly popular among autistics, basically because it seems, at least at first glance, to suggest that sedating us mostly out of our minds in order to damp down emotion and sensory input is a good idea (been there, done that-- it IS NOT a good idea).

Notwithstanding, it still makes more sense than any other theory I've encountered. ToM, even if it is accurate, does not take into account the fact that most NTs seem to lack as much theory of our minds as we lack of theirs, or the fact that having an accurate theory of anyone's mind seems to require an amount of effort that very few people (AS or NT) are willing to put in.

It fits, whether fortunately or unfortunately, very well with my experience of the world.

I don't feel overwhelmed by the emotions of others.

Very fluffy article. Yawn.

As usual, I agree with Willard. "Intense world theory" is something I recognized was going on in myself years ago. It explains every moment of my existence and self-awareness. It creates in me great anxiety, fatigue, etc. It also causes awesome joy in me when I learn something truly new.

EXACTLY!

Hopefully non auties/non neuroscientists consider reading this.

I certainly accept the Intense World Theory, because it's exactly what I have been experiencing every day for over 50 years now. It's also being demonstrated in MRI studies, showing that the autistic brain actually has more synaptic sensory connections than a normal brain. We have trouble filtering the incoming sensory data, because we are picking up more of it than other people do.


>>Brains of Autistic Kids Hyper-Connected<<

I refuse to take pharmaceutical meds because of the laundry lists of side effects, however, in another example of how science lags behind common sense and conventional wisdom, I have seen several articles lately, as well as having been told directly by a mental health professional, something I could have told them nearly 30 years ago:

The psychedelic properties of Psilocybin mushrooms can effectively cure chronic depression for up to 2 years after ingestion with ZERO side effects.

>>Your Brain on Psilocybin May be Less Depressed<<

That may not be a cure for High Functioning Autism, but I can tell you from personal experience, it sure makes it easier to live with. It doesn't do anything to alleviate the social awkwardness, but it does virtually eliminate the anxiety and panic attacks and for many months afterward, you will not get seriously, suicidally depressed about anything. Difficulties seem much easier to shrug off. Life feels manageable, even in the face of adversity. However, after about 2 years (give or take 6 months), it does wear off.

That last paragraph...especially the part about emotions...

YEARS ago I read that people who'd started out with fairly classic autism but came to be viewed as "doing better" or even "high functioning" when they were older, said that when they were younger, they absolutely had wanted human contact and interaction, but couldn't deal with it when it actually happened, and they'd withdraw or have a meltdown.

Where are these people coming from? This is stuff that's been known for a long time.

I love the intense world theory. It is so exciting and I identify with it so much.
Kudos to the Markrams for their insight and perseverance and for bringing to light within the scientific community, what autistic people already know intuitively.

Yes-- the could have just asked us.

Should have just asked us.

But how are they going to do that when we have been, for years, completely disenfranchised?? Dis-credited, dis-humanized, dis-just-about-everything-else?? Why would a researcher listen to people that are not deemed worth listening to??

Would this guy have looked, seriously looked, if it hadn't been his son at stake??

It makes me sick too-- but, frankly, at this point in my life I will take being finally understood (and possibly, someday, accepted) almost no matter how it comes. I will rejoice for every small step-- no matter that it's laughable, no matter that it could have come decades ago if only someone had listened to us.

I'm tired of being deficient and broken. It's too late for me, but maybe there is still a future of understanding for my child. I don't suppose it matters if there is-- he is six. He does not need a FUTURE of understanding. He needs understanding IN THE PRESENT.

Maybe I'll look into the psilocybin thing. Once upon a long-ago time I was curious about them-- I did not experiment because the only people I could get them from were ones who would have been more than happy to mess with my head or take advantage of me while under the influence.

Not that I know people I'd trust now, either-- but in my old age (at least, absent the children) I'm reckless enough to simply trip alone.

I agree with this so much. The intense world theory seems understandable to me. Many of the symptoms of people with autism are intensified when compared to the same function in neurotypicals.

One small example of the theory is that the amygdala is enlarged in many children with autism (Brodal, 1992). The amygdala is responsible for the processing of threatening situations; fear. They have found that when children with autism look into the eyes of another person the amygdala activates, even when the other person is not threatening.

So, if the amygdala is enlarged, I think it's entirely plausible that the other sections of the brain, that deal with the other symptoms of autism, are also enlarged or hyper-connected

I grew up having severe night terrors every night and I remember all too well that overwhelming feeling of panic when the teacher asks you to look into their eyes. It's nice to be able to have a theory that explains to other people (and myself) what's going on.

interesting read.

The brain develops and connects itself at a very early age so every person, NT or otherwise, has a unique neural connection pattern. If autistic brains are hyper-connected and since neural connections become stronger the more impulses flow through them then it would make sense that this would cause the effects that another brilliant neuroscientists, Dr. Ramachandran, has found in autistic brains: Mirror Neuron dysfunction. Essentially the mirror neurons aren't wiring themselves 'the NT way' because during the developmental years they underwent developmental dysfunction because of the hyper-connectivity.

Very,very interesting.

This!

I started out with classic autism and became verry merry berry high functioning, and when I was younger, I had no idear about social interaction, no desire to have it, and there was no withdrawing or melting down behavior when it happened, as I was rather indifferent to it.

Intense world is interesting for further research, eggsp. in hooomans, and I want to add eggspt. condition to test it in my current eggspt, but it may not eggsplain well subgroups of autism other than the one that the markrams are focused on based on their son.

Wow, finally.