4

Counterintuitive

To give your child a chance in the future,

you must slow down its present.

Remember Paul Ehrlich, who brought medicine into the twentieth century? He made a decision that would save a lot of lives: instead of healing diseases, he sought to prevent them.

Autism doesn’t fall from the sky, as Henry and Kamila’s research has shown. It isn’t destiny—it sneaks in, it develops. That means one can prevent it. But how exactly?

In a perfect world, where Henry had endless knowledge, funds, and time at his disposal, he would proceed like this: First, he would seek to understand the genes linked to autism. There are more than two hundred of them. Second, he would try to identify the triggers, of which there are many: manganese, mercury, alcohol. Third, he would devise an emergency relief program, so that you can defend yourself even if you are genetically predisposed toward autism and it is triggered. There is a reason that autism often only develops after a few years.

Henry and Kamila didn’t have time—they had Kai. There was nothing they could change about his genes and triggers at this point. And so, instead, they asked themselves: How can autism be reversed, ameliorated, prevented?

The first three years of a person’s life are decisive for their development. Their very nature is shaped, their senses, their language, their intellect, their feelings, their behavior, their capacity to love. Whatever you miss during that period will be very hard to make up for later. In those first years, children experience so-called sensitive phases, which is what scientists call the time windows where a child can acquire those fundamentals easily or lose them forever. If, for example, a child doesn’t hear any language during those years, it will never learn to speak.

During some of these time windows, a child’s synapses double in number and learning becomes literal child’s play. However, if the child isn’t provided mental fodder, stimuli, those same synapses atrophy again. Parents, teachers, and neuroscientists would like to know when each window opens. Everything seems to have its best time: the learning of language or a musical instrument, the establishment of self-confidence and social skills.

Autistic people have to protect themselves. They can bear to assimilate the world only in snippets. For children, this is a tragic situation. When an autistic child closes its eyes and ears to protect itself, it is doubly tragic. For, along with the pain, it is also blocking out vital stimuli. It develops poorly. The behavior that protects it now destroys its future.

Plasticity is another important factor. Kai remembers exactly what shoes he was wearing and where he was standing when Henry told him that they had taken the wrong hiking trail and needed to check into another hotel. That trifle was traumatic to Kai: he’s as unlikely to forget it as you are to forget 9/11. Kai experiences his personal 9/11 almost every day. And he can’t cast any of them from his memory. Being unable to forget is torture. Forgetting is a form of liberation. It is the brain’s sewage disposal. If you can’t forget, you end up mired in the past. If you can’t forget, you end up stifling your spirit.

Neglected or abused children often behave like they’re autistic. They sit there frozen by fears, unable to look up at people or approach them. They, too, are trapped in old suffering, not given the opportunity to develop. That’s why doctors used to blame parents for their child’s autism, because superficially it so closely resembles the trauma derived from neglect and abuse.

Henry and Kamila conducted another three years of research, studying cells and behavior. In the end, they established a set of recommendations for autism prevention and treatment that contradicted the old teachings as much as their foundational insight, the intense world theory, had.

Autism develops in the unborn child. Every mother should be careful in pregnancy, should be wary of medications, environmental toxins, and alcohol. If she drinks just a small glass of wine during the period when the neural tube closes, when the brain is formed, she exposes a genetically predisposed child to a one-in-fifty chance of developing autism.

If autism is diagnosed, it must not be treated like a mental disorder. Such treatment makes everything worse. Stimulating the brain accelerates autism.

At the first sign of autism, an avoidance therapy should begin, and it should continue until the child has gone through all sensitive periods of brain development, until it goes to school at the age of six. “Such critical periods are often irreversible milestones,” Henry and Kamila write. The outbreak of autism can be mitigated and perhaps even avoided if the child spends that time in the right environment.

Unlike a normal child, an autistic child should grow up in a world that’s filtered, sheltered, and protected. Their lives should be calm and predictable. “No computer games, no television, no bright colors, no surprises. Surprises can be painful. They remain in memory, and memories shape your life. It is hard enough for normal people to erase their memories, and even harder for autistic people.” They go on to say: “The brain needs to be calmed down, learning needs to be slowed, stimulation reduced.”

It sounds hard. “Try telling a mother or a father, ‘We have the following plan for your child: we will stagger its brain development and its learning,’ ” says Henry. “It’s counterintuitive, but this will allow its brain to function later.” To give your child a chance in the future, you must slow down its present.

If a child’s impressions of the world are muffled and filtered until it starts school, Henry says, you will avert the greatest danger, which is that parts of the brain go into a lasting phase of overaction. After those first six years, the child should take control itself, deciding what is good for it. “It should occur on its own, with gentle guidance and encouragement. Support your child as you see fit—but in slow motion. Let the child set the pace. It needs that feeling of security,” write Kamila and Henry.

In the context of behavioral therapy, the child should cautiously be exposed to stimuli, allowing it to withdraw if it feels any stress. The therapist should only introduce new forms of stimuli in short, controlled instances. The goal is to let the child get accustomed to the stimulus and to lower its sensitivity. This is the same recommendation a group of Harvard scientists would settle upon years later, in the conclusion of their study on autistic people’s aversion to eye contact: careful habituation.

Do not give them medication that stimulates their brain. The brain of an autistic child needs to be calmed down, its performance reduced, its learning inhibited, its forgetfulness supported. Henry remains wary of all medication currently available. “The doctors who prescribe them have no idea what effect they have on nerve cells. It is an illusion to think that mental illness, regardless which one, could be treated easily and in isolation.”

Treating older children and adults is more complicated, but their suffering can also be mitigated, their clinical signs reversed. The therapy is the same: calm the brain, foster forgetfulness, reduce fears and stress. Don’t intervene in their rituals, whether they’re counting the lines on the pavement, building a LEGO tower, or completing a three-thousand-piece jigsaw puzzle.

KAMILA: Rituals are the result of fear. The children calm down when they repeat the same actions. You harm them when you take away their rituals. According to our theory, you should partake in their rituals, get involved in them. Eventually, they will come to you.

HENRY: Autistic children retreat into a bubble, where everything is safe, there are no surprises, and all is under control. In severe cases, the bubble can be quite intractable. You have to get inside it somehow. You have to sit outside the bubble and wait. That’s the difference with usual therapies. You don’t tell the children what to do; you do not push them. You wait and support them. And this is challenging, but it’s the only way. Just support them and let them take the lead. It takes time. You may feel that it’ll never work, but when they take the lead, it does.

An excess rather than a deficit of feelings? Curb the brain instead of stimulating it? Participate in their rituals? This set off an intense series of debates. Simon Baron-Cohen, one of the scientists responsible for the mind-blindness theory of autism, graciously tweeted: “Fascinating personal perspective into Henry Markram’s ‘Intense World’ theory of autism,” and linked to a glowing article about Henry’s thesis by autistic science writer Maia Szalavitz. His equally renowned colleague Uta Frith, the second mind behind the experiment with Sally the doll, did the opposite and coauthored a harsh critique of the Markrams’ theory:

Our particular concern regarding the Intense World Theory centers on drastic suggested treatments for individuals with autism, namely withdrawing stimulation during infancy. The Markrams do not merely hint at such interventions, but explicitly spell them out. Yet if the theory is incorrect, these treatments could be damaging. As studies of Romanian orphans have strikingly shown, insufficient stimulation and impoverished neuronal input in early development are damaging to children’s social, cognitive, and emotional functioning.

Firth and her coauthor further criticized that the Markrams had ­published their conclusions too soon. While the Markrams’ study acknowledged that their theory had yet to be substantiated by systematic studies with human test subjects, it already called for a “drastic change” in the treatment of autistic children. Frith concludes:

We need to verify this theory before it can shape our perception and treatment of autism. Once this is done, we may well find ourselves with an intensely interesting proposal. For now, we remain intensely worried.

HENRY: When we published the paper, we weren’t exactly greeted with open arms.

KAMILA: Someone said we wanted to lock children in a black box—a complete misinterpretation, the opposite of what we’d written. All we were saying is that they should grow up in a calm and structured environment. Every child needs stimulation, as much as it can bare without feeling overwhelmed.

HENRY: That can’t harm any child. That’s why we felt comfortable making those recommendations.

KAMILA: I think it’s just a scientific debate. We wrote a paper that went up against mind-blindness and other theories that people built their careers on, that made them famous. They read the paper and attacked it. That’s the way of the world.

HENRY: In the meantime, our theory is being cited so often that people can’t ignore it anymore.

KAMILA: And more and more scientists are agreeing with us. Every time we read their studies, we say to ourselves, “Yay, another one!”

More than thirty studies published in the past few years have supported Henry and Kamila’s thesis. A group of MIT scientists cited the Markrams in a recent paper about hypersensitivity and autistic people’s longing for a predictable world. Unpredictable stress, they write, is “one of the key aspects of torture and leads to the development of anxiety, fear, and aversion.” They criticize treatments for autism that are only geared toward relieving symptoms, which is most of them.

A team of research scientists and doctors from Boston and Cleveland worked with autistic children and found that, even in moments of calm, their brains process 42 percent more information than the brains of normal children. This, they concluded, is what prompted their social withdrawal. One of the professors wrote an e-mail to the Markrams after the release of the study. “Unfortunately, when we wrote the study, we didn’t know how much it dovetails with your theory. Instead we interpreted our results in the classical framework: autism as a withdrawal into the self.”

The old problem: The wrong assumptions inevitably lead to the wrong conclusions.

He went on to say: “But our press release honors your theory, as is merited.”

HENRY: I don’t really care about the scientific debate. The important thing is that it helps. Autism isn’t a flaw. Knowing that benefits autistic people, brings them a bit of peace. Many people write to me: autistic adults, and, of course, parents.

KAMILA: There was the mother from Hamburg.

HENRY: Yes. It’s hard not to cry when you read her letter.