How do autistic people feel?
research - “Autistic people feel a lot more than we do”: An interview with brain researcher Henry Markram
Prof. Markram, as a neurologist, how do you talk about your son Kai's autism? Are you talking about illness or mental disorder or ...?
I think, in connection with autism, “atypical brain” is the appropriate description - as a counterpart to the typical, i.e. normal, brain. When the discussion goes deeper, we speak of disorders in the autism spectrum.
And as a father, what are you saying?
As a father, I say that Kai is very different, unique and special.
How did you and Kai's mother respond to the inevitable question of what “is wrong” with your child?
In the same words: he is different, he is special - and if necessary, we explain more.
When did you first notice that Kai reacts differently to the world than his big sisters?
I think when he was still in the maternity hospital with his mother. Most newborns lie there with their eyes closed and sleep a lot. Kai was wide awake, his eyes were wide open and he immediately tried to lift his head. I found that fascinating. A few weeks later, it was his smile that caught our eye: all babies smile reflexively in their sleep. Only as we grow up do we learn to adapt our expression to the situation. Kai also showed the smile reflex, but somehow it didn't seem as natural as it did with our daughters. Later, as he grew up, we noticed that he was smiling widely in situations where no one normally smiles, totally inappropriately. But these were all just small observations, that didn't alarm us at the beginning.
Even though you are a brain researcher?
Yes. As parents, we initially saw many signs as simply idiosyncrasies of an unusual, stressful, overly active child.
Most people fear being different. How different is your life because of Kai?
Kai enriches us a lot.
That sounds almost like the romanticization of autism like in the famous Dustin Hoffman film "Rain Man".
But it's true. Kai challenges us to go mentally to places that we would otherwise never have gone, that are alien to us. I'm shy and don't just go hiking to talk to strangers. If Kai is there, I have to do it. We were once on vacation on an island in Thailand. When we left all the staff was standing in the lobby, 50 people to say goodbye to Kai. The rest of the family was completely perplexed. Kai made friends everywhere, went into the kitchen, into the offices, he simply took possession of the resort. He was kind of hypersocial autistic, completely fearless in any social interaction. As a little boy he was always fearless, went skiing, snowboarding, did everything. That has changed completely over the years. He now refuses to walk even on snow. But he's still hypersocial.
An autistic who gathers friends? Is it not a deny itself?
Why? Why can't you imagine that autistic people are very different personalities? There is a huge spectrum of "normal" people, so why should it be surprising that the same applies to autistic people? We underestimate that: every autistic person is an individual.
But what kind of process is that then? There is a child who cannot get enough input from the outside world - at the same time it becomes more and more strange, screams and rages, covers its ears in the cinema and is paralyzed with fear. Does autism only develop over time?
It is a process that we as brain researchers only understood because Kai taught us to ask different questions than before and to look for answers in other parts of the brain. This process begins with an enormous absorption capacity of the autistic brain - and ends in pain and agony because of this intensity.
The Intense World Theory that you and your second wife, Kamila, developed, has been accepted and confirmed by other researchers. But some still refuse to this day. Where is the conflict?
The old school says: Autistic people lack empathy. They are, as it were, unsocial beings. Your brain isn't active enough or it's not making the right connections. However, none of this matched our own experience. That is why we got into research on autism ourselves. We noticed: Kai wants to love, he wants to be appreciated, and he wants to communicate with other people. He just doesn't manage, or at least most of the time, doesn't manage to do it like "normal" people.
How did you proceed?
In experiments with autistic rats, we focused on the part of the brain in which feelings, memory and, above all, perception are located. After many failures, we found out: Autistic people do not feel less, but much more than others. The neural microcircuits in your brain are constantly overloaded. The areas of the brain that are responsible for perception, memory and emotions are hyperactive. Autistic people live in a world that is beyond measure loud and glaring and so intense that it hurts. And scares you.
And that's why you react at some point with withdrawal and blockades, out of pure self-protection?
Immediately after the birth, the brain does not have to protect itself, all the gates are wide open, the world flows in, everything is very exciting. The brain of most autistic people learns very quickly, it stores and remembers much more effectively than the normal brain, it is constantly running at high performance - but that is why it reacts too strongly to stimuli and it remembers too much. Especially bad experiences, they never forget. This leads to many microtraumas. And that is the great drama for autistic people that only emerged in our research: Your brain is unable to classify a negative experience and to overwrite it with a positive experience or even the lack of a repetition.
What do you mean?
If I stumble into a yellow table, I tell myself that I wasn't paying attention, relax and know that yellow tables are not bad per se. If Kai stumbles into a yellow table, then he never forgets and is always afraid of a yellow table, and then he stumbles into something else, which he is always afraid of. At some point, an autistic person is caged between all these things and situations that cause fear of pain. Then the world is very threatening.
How does your family deal with it?
Over the years, and thanks largely to research, we have learned to recognize the first signs of a panic attack in Kai. What he needs most is security, he needs to know what the plan for the day is, where we are going, when and with whom. If he doesn't have this predictability, then he feels like he's being pushed around in space. When we travel, we read our surroundings. When it gets loud, surprising, tense, when the colors in a place are very bright, then we perceive it and counteract it. Otherwise it will end in disaster.
Do you sense potential chaos even when you are not with Kai?
I do think that we have become more attentive. That doesn't mean that we experience the world as Kai experiences it. The irony is, to this day, most people still see autistic people as lacking in compassion. But we “normal people” lack the empathy to understand the pain that autistic people are exposed to. I only realized that through Intense World Theory, and it taught us all in the family to be a little more thoughtful. I believe that because of Kai, we are more aware of how little our understanding of other people's feelings is.
You allowed a German journalist to accompany you and your family and to write a book about your private and scientific trip with Kai. Why do you - and thus Kai too - expose yourself to this publication of the private?
Because autism is a tragedy for every family. We believe that the key to a good life with an autistic child is knowledge. And we believe we've learned so much about dealing with autistic children that we should at least try to help other parents.
What is your advice to these parents?
We are not claiming that we have found the ideal solution - do this or that and everything will be fine, there is no such thing. But we can explain what overstimulation of the brain does to the child and why traditional approaches in therapy are counterproductive. A simple example: take a shower. Many autistic children resist taking a shower with their hands and feet. This refusal to do certain things is traditionally interpreted as obsessive-compulsive disorder and the frustrated parents are given the advice: try to change behavior, break the repetition, just put the child in the shower. Autistic children, however, feel the crackling water like knife wounds, it hurts them terribly, and that's why they scream, not because they are strange people or angry. Knowing this allows you to adapt your own behavior. Then there is a bath instead of the shower or a very gentle jet of water for which the child is prepared in peace.
The hypersensitivity you discovered has been included as a diagnostic criterion in the most recent US diagnostic manual for psychiatry. Are there any approaches for a new drug treatment for autism?
We see many possible targets in the brain - for example the receptors that are important for processing and reinforcing memories. If it were possible to dampen these receptors, then one could potentially also dampen the traumatic experiences and let the brain learn that they were not that bad after all. Another area of application could be excessive signal transmission between neurons. Or we concentrate on regions of the brain such as the limbic system, which ensures in a special way that we learn to assess emotional situations and know what is important and what is not. All of these options have to be explored in the first place. It's not about changing personality.
So will it ever be possible to make the difficult parts of life easier for people with autism?
The really big challenge in developing drugs for autistic people is: Every autistic person is unique. Everyone has a unique profile of changes in their brain. This uniqueness has long puzzled science, leading to the belief that there are many different types of autism - and many reasons that cause autism. We still have no evidence that this is wrong. But we believe that despite the variety of autistic personalities - one sits in the corner rocking back and forth, the other can instantly memorize every word in a book - autism is caused by the same changes in the brain in all of them. They are just different regions that change at different times.
Researchers are working on a blood test that will make an early diagnosis possible. Would that change anything?
Absolutely! We have our first ideas about such a blood test. If you know from the start that your child will absorb absolutely everything and that it will backfire at some point and the child will withdraw, then you can deal with him in a completely different way. It is supposed to grow up in a normal world - but with early knowledge you can protect it from excitement and surprises and too much stimulation. If we had known more, if we hadn't traveled around the world with the little quay, we would have given it a firmly structured everyday life. Hence the book: It is too late for us to help Kai in this way. Not for other parents.
The father-son story
What kind of child is it who runs up to the cobra of a snake charmer without fear - but cannot stand a movie? The German journalist Lorenz Wagner interviewed and accompanied the Markram family. The result is a book that tells the story of brain researcher Henry Markram and his autistic son Kai in an exciting and sensitive way.
Lorenz Wagner: "The boy who felt too much". Europa Publishing House. 216 pages, 18.90 euros.
The researcher and the voices of the experts
Henry Markram revolutionized brain research not just in relation to autism. He was born in South Africa in 1962 and grew up on a farm in the Kalahari Desert. After the suicide of a beloved, depressed uncle, the young man wanted to learn what goes on in the human brain. It turned into a career that made him world famous.
Markram studied medicine and neurophysiology, carried out research in Israel and the USA, and worked for a time in the team led by the physiologist and Nobel Prize winner for medicine in 1991, Bert Sakmann, in Heidelberg. Since 2002 he has headed the Institute for Brain Research at the École polytechnique fédérale de Lausanne. There he started the Blue Brain Project; The aim is the computer-based simulation of the brain. In 2013 this project was transferred to the Human Brain Project, initially funded by the EU with one billion euros.
His management style met with criticism, however, in 2015 he gave up the management of the already controversial project. Since then, he and his second wife, Kamila Markram, who is also a neuroscientist, have been concentrating on the Swiss Blue Brain Project, which aims to decipher the brain.
Beyond research, those affected are making themselves heard more and more and more diverse - than the experts par excellence, also in Germany. On the one hand there is the large self-help association Autismus Deutschland e. V., founded by parents of autistic children. The board is now supplemented by a scientific and an autistic advisory board, which usually consists of four to five people from the autism spectrum. The association provides information on its website about diagnosis, the status of research, job opportunities or the situation in autism therapy centers (www.autismus.de).
One of the most provocative and perhaps the smartest sites on the subject is autismus-kultur.de - with the programmatic subtitle "Live happily on the autism spectrum". Linus Müller, autistic and young father, founded it in 2007 - according to his own admission "with the aim of bringing together current research results and autistic experiences". Even if autism culture primarily wants to be a guide for those affected: It is also an eye opener for people who know little or nothing about everyday life with autism.
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