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Autism From The Inside - Living With My Brain In Overdrive

In his own world
In his own world
Laura Rethy and Lorenz Vossen

BERLIN - The traffic on this German road moves along in a neat pattern, changed only when a car makes a right.

When it does, Markus Behrendt turns to look out the window. He may only have seen the turning car – a change in pattern – out of the corner of his eye, but it requires his complete attention. His brain is in high gear. He says: “My memory is filled with nonsense,” by which he means all the unnecessary sensory stimuli around him.

The 38-year-old man takes everything in unfiltered: a radio playing, the rattling of dishes, the rustling of newspaper pages – and all traffic noise. All voices sound equally loud, all stimuli equally important. His brain must sort everything it absorbs. That takes a lot of energy.

Markus is autistic. Doctors diagnosed him with Asperger’s Syndrome five years ago. Until he was 33, those around him just thought he was odd. Doctors had always told his parents: "He’ll grow out of it, like other boys." But since he found out about his Asperger’s, many things have become a lot clearer for him.

Five hundred kilometers away, the day is beginning with a potential catastrophe. As she does every Thursday, Maria Meier, 28, was supposed to go riding – except today the stables are closed. Luckily there’s an attractive alternative: going to the mall to buy a new coffee machine.

On a bulletin board, Maria re-plans her day: work, go on a drive, buy coffee machine, drink coffee. In the office upstairs sits Alexander Lietzke who heads the live-in center for autism patients called Wohnstätte Moltke-Haus, in Potsdam near Berlin. He had prepared Maria early for the fact that there would be no horse riding today. The patients here have all been diagnosed with early onset autism; a deep-set developmental disturbance mostly accompanied by intellectual disabilities and impaired speech development.

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Photo: Becky Wetherington

One of the ways autism manifests itself is that any change in routine can become a huge problem. Maria is also deaf. In sign language she keeps asking Lietzke about the organization of her day. "This asking the same thing over and over is stereotypical behavior, but it’s really a way of communicating and it gives her a feeling of security," he says. Some days, Meier asks the same question up to 50 times.

Even as a child Markus was very different from this. He would sit for hours in a kind of trance. "I remember those situations. I know what I was thinking in those moments – and it was a lot," he says.

Things took a turn for the worse when he started school. His parents remember that they all went through hell. It started with the walk to school. "My parents walked with me, over and over, for months," – out the door, straight ahead, turn twice. For Markus managing this walk was nearly impossible. He would focus on details and forget the larger situation. If something changed – like the way a bush was pruned – he lost track of where he was. Today he knows that "the autistic brain recognizes differences rather than similarities. It’s called ‘weak central coherence.’" The brain doesn’t register what something is if its appearance changes even slightly.

Back in Potsdam, Maria is attending a birthday party and sits with the others around a table. Her concentration is fixed on the coffee cups at the other end of the table. When the celebration is over, she wanders down to see if there’s any coffee left in the cups. Along with household chores, drinking coffee is her favorite thing.

Like a “secret society”

"Many people think that all people with autism are like the character in Rain Man. But it manifests differently in everyone. Even people affected by early onset autism. They may have similar symptoms but they require individual support," says Lietzke.

Markus did not get such support. When somebody has Asperger’s you can’t see it. By the time he finally got to school he couldn’t find his classroom. Since he can’t tell faces apart, he would follow the wrong kids, sit down in the wrong class, with no idea how to get to the right one.

"Looking back, I can see the funny side of it, but on-going it’s just so difficult," he says – particularly as he had no friends, because he didn’t know how making a friend worked.

So from a safe distance he would watch the other kids in the playground – how they would approach each other and say hi. "But there were so many variables, it just seemed like something I’d never figure out." He had the feeling, he says, that all the kids belonged to a secret society and he’d been left out.

In Potsdam, Maria has checked off “work” and removed the work picture from her day’s schedule. She had spent a half hour with Lietzke working on letters and numbers, and they also practiced some sign language. The home’s carers encourage her regularly to interact socially. She has learned over time to understand what a smile means, but only as part of a kind of vocabulary. The same goes for empathy. Says Lietzke: "We can ask her repeatedly not to be so loud, but she can’t really empathize when she disturbs others."

And yet Maria’s story is a success story. When she came to the home age 21 she self-harmed – another symptom of her autism. Lietzke says that figuring out she needed something to look forward to – like cards that count the days to Christmas or Easter – went a long way to ridding her of this.

Markus has figured out how to deal with the secret society. Not that it was easy trying to learn what emotions are from pictures because real faces only reveal them for a few seconds. Later, when he worked in a chemistry lab, he saw how his inability to interact made people insecure.

When he was 21 Markus fell in love with another Asperger patient who also hadn’t yet been diagnosed. Meeting this man was the greatest piece of luck in Markus’s life. "For me there are two groups of people: my partner, and the rest," he says. From the start he allowed his partner to touch him – something he allowed not even his parents to do. His partner was also the one who helped get through the loss of his job, in his early 30s. Suffering from depression, he for the first time learned about Asperger’s – and at first rejected the idea. He too was full of Rain Man clichés.

Today he sees the positive sides of the diagnosis. He works as a volunteer with the Technische Hilfswerk, a civil protection organization, and he’s often more effective than the others because he keeps a cool head. He says he has something to give that others don’t, and believes society should learn to accept more variables, just as he has.

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