At KDPV - the building of the Sydney Opera House, illuminated in blue in support of the World Autism Awareness Day. The article by Maya Salavits describes the theory of the intense world of Henry Markram.
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At the same time, in families with autism, on the contrary, the reaction to the research results is positive. “In the intensive theory of the world, there are elements that better fit the experience of an autist than most of the previously discussed theories,” says Ari Neeman, president of the Autistic Self-Defense Network. "The fact that more attention is paid to sensory problems is closer to life." Naaman and other autistic people struggled to add sensory problems to the diagnosis in the DSM-5; the symptoms were first recognized, and this is another sign of the adoption of theories, such as the theory of the intensive world.
Steve Silberman, who writes a history of autism called “NeuroTribes:“ Reasonable thinking about people who think differently, ”says:“ For 70 years, we have investigated autism, based on the fact that autistic people have impaired brain development. Instead, the theory of the intense world claims that autistic people feel too much and feel too much. This is a valuable comment, because I believe that the deficit model has caused tremendous injury to autistic people and their families, as well as misleading science. ”
Priscilla Gilman, the mother of an autistic child, is also encouraged. In her memoirs, The Anti-Romantic Child, her son’s diagnostic odyssey is described. Before Benjamin went to kindergarten, Gilman sent him to the Yale Child Study Center for a full examination. At that time, he had no classic signs of autism, but it looked like he had hyperlexia — at the age of two and a half he could read his doctor’s dissertation his mother’s expression with an expression and fluently. Like other talents of savants, hyperlexia is often rejected as a "by-product" skill.
Yale University experts rejected autism, telling Gilman that Benjamin "is not a candidate because he is too" warm "and too" attached, "she recalls. The embrace of Kai Markram was also considered inappropriate. However, at the age of twelve, Benjamin was officially diagnosed with an autism spectrum disorder.
However, according to the theory of the intense world, heat is not incompatible with autism. What looks like antisocial behavior, caused by the over-influence of the emotions of others, is the opposite of indifference.
Indeed, studies of ordinary children and adults find that too many disasters can also weaken empathy. When the pain of others becomes too unbearable, even ordinary people go into themselves and try to calm down, and not help - just like autistic people. Simply autistic people are more prone to stress, and therefore their reactions seem atypical.
“The fullness of understanding how other people feel can lead to what is perceived as an inappropriate emotional response, or what is perceived as being closed, and people consider this a lack of empathy,” says Emily Willingham. Willingham is a biologist and mother of an autistic child; she also suspects that she has Asperger syndrome. But instead of being passionless, she says, autistic people “accept everything as a tsunami of emotions that they feel from others. Care is just protection. ”
At least one study confirms this idea, showing that although the results of cognitive tests (like the Anna-Sally test) in autistic people are worse, they have more empathy than normal ones. “I have three children, and my autistic child is the most sensitive,” says Priscilla Gilman, adding that when her mother first read about the intense world, she said: “This explains the behavior of Benjamin.”
Benjamin's hypersensitivity is associated with his amazing perception. “He can say,“ Mom, you speak in the key of re (speaking in the key of D), please speak in the do, it’s easier for me to understand you. ”
Since he has a musical background and a high IQ, Benjamin uses his own sense of “absolute hearing” - the ability to name a note without hearing another for comparison - to describe the problem he is experiencing. But many autistic people cannot verbalize their needs. Kai is also very sensitive to vocal intonation, he likes the teacher, because, as he explains, she “speaks softly,” even if she is unhappy. But even at age 19, he cannot give a definition better.
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At our last meeting in Lausanne, Kai came in blue hoody and gray unlined sneakers in the style of Chuck Taylor. “My rapper sneakers,” he says, smiling. He speaks Hebrew and English and lives with his mother in Israel, attending a school for people with learning disabilities near Rehovot. He is relaxed, although sometimes he frowns for no reason. But when he speaks, it becomes obvious that he wants to communicate, even if he cannot answer the question. When asked if he thinks he sees things differently than others, he replies: "I
feel them differently."
He is waiting in the living room of the Markrams, getting ready to go to dinner. Aunt and Uncle Henry are here too. They live with their family to help with their children: nine-month-old Charlotte and Olivia, who is one and a half years old.
“This is our big family,” says Camilla, noting that when they visit Israel, they usually stay with the family of his ex-wife Henry, and she stays with them in Lausanne. They all travel constantly. No one can forget Kai’s hysteria when he was younger, one that had to be removed from KLM. The delay upset him so much that he kicked, screamed and spat.
Now his tantrums are rare. The combination of family and school support, antipsychotics, and a deeper understanding of its sensitivity alleviated the symptoms associated with autism.
“I was a bad boy. I constantly fought and delivered a lot of problems, - says Kai about his past. “I felt very bad because I didn’t know what to do. But I grew up. " His relatives nodded in agreement. Kai has achieved tremendous success, although his parents still think that his brain has much greater capabilities than can be seen in his speech and school work.
As Markrama notes, if autism arises from a hypersensitive brain, the most sensitive brain is likely to be overwhelmed by our intense world. But if autistic people can learn to filter the flow of data, especially at an early age, then the most vulnerable to autism may be the most gifted.
Markram sees it in Kai. “This is not mental retardation,” he says, “he is disabled, yes, but something goes wrong in his brain. This is a hyper-disorder. As if he multiplied many of my quirks. ”
For example, perseverance. “If I say something is about to happen,” he says, “I can become quite stubborn.
This is something that must happen on time . ”
He adds: “For me, this is a plus, because it means that I will definitely accomplish what I want. If I say that I will do something, I will do it. ” However, for Kai, waiting and planning are terrible. When he travels, he thinks up his every move, again and again, in advance. “He will sit and plan, and when he gets up he will fulfill. You know that he will get on this plane, no matter what happens, says Markkram. “But he loses all day. It's like an extreme degree of my quirks, where for me they are an advantage, but for him they become an obstacle. ”
If so, autistic people have incredible untapped potential. Suppose that Kai's brain would be even more finely tuned than his father’s, then he could enable him to become even more prominent. Look at Markam’s visual skills. Like Temple Grandin, whose first memoirs on autism were titled Thinking in Pictures, he has tremendous visual abilities. “I see what I think about,” he says, adding that when he considers a scientific or mathematical problem, “I see how everything should look. If something is missing, I can imagine the development of this in time. ”
In the office of the Markram “Human Brain” project, visitors get an idea of what it means to have such a mind. In a small screening room, furnished with sapphire tulip chairs, I get 3D glasses. When the light goes out, I bring the image of the brightly lit forest of neurons closer, they seem so velvety that I want to touch them.
The simulation looks so real that it is difficult to focus on the story of the project. But it is dizzying, overwhelming. If this is just a part of what Kai's life is, you can understand how hard his early years were. This is the paradox of autism and empathy.
The problem is perhaps not that autistic people cannot understand the point of view of ordinary people, but that ordinary people cannot imagine autism.The critics of the intensive world theory are alarmed and frightened by this idea of the hidden talents of the disabled. They consider this wishful thinking, giving false hope to parents who want to see their children in the best light and autistic people who want to fight the stigma of autism. In some cases of autism, they say, intellectual disability is inevitable.
Maxim says: “If you saw one person with autism, you saw one person with autism,” says Matthew Belmonte, an autism researcher from the Grodin Center in Rhode Island. Autistic people are believed to have intelligence that may not be easily verified, he says, but it can still vary greatly.
He adds: “Biologically autism is not unitary. The question on the biological level, “What causes autism?” Does not make sense, it’s like asking the mechanic “Why doesn’t my car start?” There are many possible reasons. Belmonte believes that the theory of the intense world can explain some forms of autism, but not all.
However, Camilla insists that the evidence suggests that people with a strong degree of disability are the most gifted. "If you look from the point of view of physiology or connections in the brain, this brain is most strengthened."
Thus, the question arises how to develop this potential.
“I hope that we will give hope to others,” she says, recognizing that the adherents of the intensive world theory still do not know how correct early intervention can reduce disability and whether it can.
Authentic leaders, such as Naaman, who are worried that they contain seeds of another stigma, are also worried about the idea of a secret ability. “We agree that autistic people have a number of cognitive advantages, and for this it is important to conduct research,” he says. But emphasizes: “People have value, regardless of whether they have special abilities. If society accepts us only because we can do cool things, it means that we are not completely accepted by them. ”
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Now Markrama is busy exploring whether a calm, predictable environment during early development - aimed at reducing overload and surprise - can help VPA-rats, alleviating social difficulties and at the same time developing enhanced training. New studies show that autism can be detected in two-month-old babies, so research results provide hope.
For now, says Camilla, the data looks promising. The unexpected novelty seems to worsen the condition of the rats, and the repeated and safe introduction of a new material seems to cause improvement.
In humans, the idea would be to keep the brain calm when it is most vulnerable during critical periods in infancy and early childhood. “With such intensity, the chains will block and become rigid,” says Markkram. "This should be avoided, because it will be very difficult to return the original state."
For children with autism, early intervention can mean improved learning and communication skills. Although it is already clear that early interventions can reduce disability, they usually do not use thoughtful ideas. The behavioral approach, the most popular of which, applied behavioral analysis, rewards the observance of “normal” behavior, rather than trying to understand what drives autists to act and defeat disability from its very beginning.
Studies show that people learn best when they get only the right tasks - not so easy that they can get bored, and not so difficult that they can cause stress; not in the comfort zone, but not in the stress zone. The best option may vary with autism. But according to Markrams, it is different in degree, not in type.
Markram proposes to create a soft, predictable environment. “It's almost like the fourth trimester,” he says.
“To prevent the blocking of chains under stress or behavioral patterns, you need to create a filtered environment as early as possible,” explains Markram. "I think that if you can avoid it, then these chains will be blocked due to the flexibility that is provided by security."
Creating this special cocoon can involve using something like headphones to block excessive noise, gradually increasing the exposure and, as far as possible, sticking to the routine, avoiding surprises. If parents and teachers cope with this, he argues: "I think these children will be geniuses."
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A biased attitude in science is always an invisible enemy. Having an interest means that you can change the rules to support your point of view, intentionally or simply because you ignore the inconvenient truth. In fact, the whole scientific method can be seen as a series of attempts to supplant bias: a double-blind, controlled study exists, because both patients and doctors tend to see what they want to see - improvement.
At the same time, the best scientists are guided by passions, which can be nothing but a deeply personal experience. Markrams openly say that their subjective experience with Kai affects their work.
But this does not mean that they ignore the scientific process. A couple can easily cope with criticism of the theory of the intense world, simply claiming that their theory is applicable only to certain cases of autism. This will make a refutation difficult. But they chose not this way. In their 2010 article, they list a number of possible finds that will invalidate the intense world, including cases where the corresponding brain circuits are not hyperreactive, or find that such excessive activity does not lead to deficiencies in memory, perception or emotions. . So far, the data confirms the theory.
But regardless of whether the intensive world really takes into account all or even most cases of autism, the theory is already a serious problem for the idea that the main signs of autism are lack of empathy or social disorders. The theory of the intense world is opposed to stigmatizing stereotypes that present the strengths of autists as weaknesses or at least as less significant because of their weaknesses.
And Henry Markram, trying to understand the perspectives of his son Kai and even identifying himself with him, has already rendered a service to autists, demonstrating the kind of compassion that people with this disorder are deprived of. If the theory of the intense world turns out to be true, we all have to think about autism, and even about the reactions of ordinary people to data overload, characteristic of modern life, quite differently.