5

Letters

“Please help my wonderful son.”

Dear Mr. Markram,

Please forgive my spelling mistakes. I live in Hamburg. My English isn’t great. I am the mother of a wonderful four-year-old boy. His name is Elias.* He’s autistic.

Elias’s father wants to put him in a mental institution. He claims that I made Elias sick.

Please help my little son. He is wonderful. He laughs a lot. He has three older sisters who love him. Unfortunately, he can’t spend much time in the same room with them. He starts crying. He can’t be in any room for long with more than two people. Their voices irritate him. He hates going out, because of the noise. He can’t play with other kids. When other children come to visit, he is riddled with fear. He wants to do the same things every day. He listens to the same music every evening—he loves Grieg. He doesn’t understand what time is. He doesn’t understand the difference between breakfast and dinner. On rainy days, he cries, because he thinks the day is getting “old” and he has to go to bed soon.

He cannot be alone in a room.

Please, Mr. Markram, help my wonderful son.

Sarah

Allow me to introduce myself: I’m autistic and have an autistic son and a highly gifted daughter. I was able to arrange a special training for her. The trainer recommended a calm and predictable environment. Her room should be painted in a neutral color. It has only one shelf, and I only put two toys on it. Later, I added some building blocks, but very slowly.

I’m sure such an environment would have benefited my son, and me too. My daughter is five years old now, highly gifted, and though she exhibited sensory abnormalities in early childhood, they have since disappeared.

Thank you so much for your time,

Brandy

I have Asperger’s and read your “Intense World Theory” with pleasure. Finally, people who don’t have autism will find out what we autistic people have been trying to show (and say!) to them all this time! During my childhood (since I was very small), during my adolescence, and as an adult, I was told that I had few if any emotions, little to no sensitivity or any kind of perceptiveness. Essentially, I was told that I wasn’t an “I” and that’s how I was treated. I often told my parents, teachers, doctors, and therapists that I perceived things more strongly, not less strongly, than them. They chalked that up to bad behavior or to the lies of a feeble-minded person who refused to face her problems. I was punished for that “bad behavior.” May I ask you, doctor: How do you think such an approach to education and therapy can affect a person’s health? Post-traumatic stress disorder, I suspect. It’s like treating anemia with blood-letting.

Kate

Dear Henry,

It’s almost as if autism is a contagious and shameful disease. I work full-time, which apparently only 15 percent of autistic people do. I struggle to be understood in my workplace. The management sees my needs as an attack on them. After the diagnosis in 2013, I thought my life would become easier. It has not. Last week, I started cutting myself. I thought no one would ever understand me. I don’t even know how you can help me, but I just had to write you. Who knows? Maybe I can help you, too.

Tears are streaming down my face as I write this. Attached find a photo of me, one where I’m smiling. I think the way I look misleads people. They can’t see my condition, because I look like everyone else.

Sandra

And so it continues:

I am a speech therapist and I have a ten-year-old son with autism. I am very influenced by your work and treat my son and other autistic children accordingly. (Liz)

I read an article about you in the Süddeutsche Zeitung. It expressed exactly what I feel. I have feelings, not all the time, but so intense. (Sandor)

I have two nephews, autistic. I run marathons to raise money for them. They definitely have empathy. (Heather)

I am forty and was only diagnosed recently. Reading your theory, I felt that someone understood me for the first time. I experience the world as too fast, too loud, too intense. (Fabrizio)

I was very moved by the article about your son and agree with your thesis. Since I have autistic traits myself, I know the excessive demands of the normal world all too well. (Dagmar)

Henry and Kamila receive countless letters and e-mails from people with Asperger’s and autism, parents and friends, academics and handymen, doctors and laymen. There is plenty of writing about the Markrams’ theory online in blogs, forums, and comment sections. One such comment, by a mother, recalls Frith’s indictment of their work:

My world is completely changed. It was the first time that I’d heard anyone working in the autism field who did not speak of it as a deficit. I remember reading every paper they’d written, making my husband, Richard, read everything I was finding as well. We stayed up every night for weeks discussing what this might mean, how it changed our view of our daughter, Emma, and how it completely upended how we worked and communicated with her. I felt as though everything I thought I knew about Emma opened up and I was introduced to a vibrant, new, and hopeful world.

Uta Frith’s concerns must be taken seriously. Henry and Kamila have indeed opened a door for autistic people and their families, those who have had to live with the word incurable for so long. Their theory moves affected people to their core, stirring hope and longing—a responsibility the Markrams sought as little as fame or money. They haven’t earned a dollar with their theory, publishing it for free on the internet, and they sell neither medication nor treatment plans. They can’t help the whole world, not the mother from Hamburg, nor Kate from London, nor the autistic father from Basel. They read e-mails, they listen, answer, and encourage. They didn’t start with a grand plan. It was all about Kai. He somehow got them caught up in this. Now they can’t change it—they wouldn’t want to if they could—and must live up to the responsibility.

The studies must continue, for the sake of all autistic people and their families. Their findings require further confirmation and more tests on human subjects. Their correspondents expect that from them; some very openly, like Kate, who writes at the end of her e-mail:

“May I also ask you: what, if anything, can be done or at least suggested (by you or others) to remedy the psychological and neurological damage caused by a) the disorder itself and b) the wrong treatment?”

Their studies continued. Next, they would research how to help autistic rats recover. In the meantime, Henry pushed ahead with a project that would make all animal experiments unnecessary. It promised to be the biggest scientific mission of all: the simulation of the brain.

^*Names have been changed in all the letters quotes here.