Be in the world
Our son John was born in Arlington Heights, Illinois, in September of 2000. He was 18 months old when he suddenly developed seizures and was admitted to a Suburban hospital. His hospital crib was equipped with padded bars, all-around, like a cage. A cord attached to a clamp on his big toe led to a monitor, the display read 126/96 in red digital letters. Our happy, strong and curious child lay there exhausted from pills, exams and seizures. Two weeks prior everyone had considered him a normal child. Then one day we had noticed a strange jerk in his arms that repeated itself in a more pronounced way four days later, the arms flailing forward, the head nodding towards his chest. We described the event to our pediatrician who sent us for an EEG. The very same day, we received the diagnosis prosaically over the phone: “Your child has epilepsy, he needs to be admitted to the hospital as quickly as possible.”
Due to the severity of his seizures, John was soon transferred to the Epilepsy Center of the University of Chicago. One of us stayed with him at all times. Monika quit her employment. A two-year odyssey in the U.S. and Germany followed, countless experts on two continents were puzzled, as John’s health continued to deteriorate. Medications were increased and decreased, combined and discontinued. John was caught in relentless seizures and side-effects. An aggressive hormonal therapy was aborted when the cardiologist diagnosed a life-threatening thickening of John’s heart muscle. As second-to-last option we tried the ketogenic diet for four months, a medically observed intervention that had helped some people whose epilepsy had not responded to medication. To no avail. Finally the renowned Epilepsy Center of Bethel in Bielefeld, Germany, investigated the option of brain surgery, but the seizures originated in too many different parts of the brain. The head of neurosurgery bade us farewell with the words: “You have to get used to the idea that your child will have seizures every day, as long as he lives.”
As if to contradict this careless appraisal, John became seizure-free shortly after our discharge, as mysteriously as the whole ordeal had started. Without seizures and medication, we started to notice conspicuous behavior that pointed us in the direction of a perception disorder. Our special ed kindergarten’s psychologist recommended a visit to an autism diagnosis center. The search that had begun two-and-a-half years earlier in room number 218 of a Suburban hospital near Chicago ended with a ferry ride over the river Weser in Bremen, Germany: the Autism Center tested John for two hours and diagnosed him with early childhood autism.
We eventually both replaced our employed jobs in Chicago by working as freelancers, to give us flexibility for John's care. We decided to settle in Berlin. We had started to attend parent meetings, self-help groups, inside the hospital and continuing after our discharge. The stories we heard were discouraging at times: tales of struggle and isolation. We knew we were inevitably in for the struggle: life with severe autism is not easy – no need or use denying that – but surely there must be something we can do against the isolation part, we thought.
During one meeting, a sixty-year old woman talked about life with her thirty-year old son. Monday to Friday he attended a work-shop for people with handicaps from 8 a.m. to 3 p.m., outside of that he was unwilling to leave the house or interact with other people. She spent the afternoons and evenings alone with him in the house, as well as the weekends, during which he refused to put on anything other than his pyjamas. They ensured that he didn't have to go out between Friday afternoon and Monday morning. Then there were the holidays and vacation times when the work-shop was closed, sometimes for several weeks at a time. The mother talked about her isolation: her husband had left several years ago, he couldn’t tolerate this life anymore. She said she understood his decision, but saw no way out for herself. She didn't want to admit her son into a home, and at her own house, she didn’t manage to change his routines. She spoke to us intensely: “Your son is still small. Train him early to be part of normal activities, to be in the world. That’s why I come to these meetings, I hope that young parents can learn from me. My son and I live in our house as if it were a deserted island, completely isolated. Don’t let it get that far.” Her words resonated with us. John was three-and-a-half years old at the time, and maybe it was time to get going with a plan to be in the world, as the mother had put it.
According to studies, autistic children can hardly be distinguished from neurotypical ones in certain emotional aspects: they can be influenced by moods around them, they can feel proud, shy or jealous, for example. The areas in which the autistic children differed from the neurotypicals were shame, compassion, guilt and the consideration of other people’s feelings. So the crucial difference is in the perception of self versus other people’s self. You can feel proud, shy or jealous and you can be influenced by moods around you without having to go beyond your own self. You experience these feelings on your own. The deficits, on the other hand, are in areas that require an awareness of someone else’s self being different from your own. As wide as the spectrum of autism is, autistics generally have difficulties putting themselves into someone else’s head (known as Theory of Mind). But we don’t want to concentrate on that difference right now and rather consider the fact that so many feelings turned out to be almost indistinguishable from neurotypicals. Knowing about the wealth of their feelings, it is impossible to regard autistic people as callous, numb or insensible, as has been done in the past. Quite on the contrary, we know today that autistics have strong feelings and that their rich inner life is very closely connected to the outside world. The autistic woman Dawn Eddings Prince writes powerfully about her feelings of connectedness:
“Since I remember – and that is from my own beginning – I have been pierced and pained by the intensity of life. There were many times as a child I believed I would crumble in on myself, my emotional skeleton finally eaten away by the screaming and clutching of a modern society that dissolved me – normal life, other people call it. I knew from my earliest years that I lived in a culture that trains disconnectedness. [...] Even still, though, as an ageing woman, everything – from blackberry leaves to bends in the stream – has a personality to me, a kind of resonance that is an extended reflection of myself inviting friendly familiarity. My world is a place where people are too beautiful and too terrible to look at, where their mouths speak words that sometimes fall silent on my ears while their hearts break audibly. I wonder how the world avoids going deaf from the din of breaking and thrilling hearts and the roar of unshed tears and uncried joy. [...] I don’t have a good sense of where I start and end and where the things around me have boundaries. I am always a living part of a living world.”
Dawn Edding Prince’s descriptions catch an impression we have long since had about our son. From a very early age, John saw things that we didn’t see and heard noises that we didn’t hear. Only by trying to follow his lead, we occasionally discovered what moved him. One evening for example, John was lying on the floor in the living room, underneath the window and the pulled curtain. He was giggling and seemed utterly happy, but we couldn’t understand it until we laid next to him, looked up as he did, and discovered that the curtain’s grey-and-white pattern moved in the air that was streaming out of the heater, and the grey-and-white pattern’s movement between the clear light inside of our living room and the descending twilight of sunset outside created light effects that were constantly changing and actually quite amazing to look at.
A common, yet misleading catchphrase for autistic people is that they live in their own world. According to our own experiences with John, an autistic person rather experiences the same world in a different, yet also very powerful way. Much like Dawn Eddings Prince describes, John also sometimes seems to coalesce with the world around him in a way that leaves him unprotected against its force, and thereby also leaves him unable to to distance himself enough to grasp a bigger picture. When John was three years old, he had a brainstem audiometry, because his hearing seemed impaired. It turned out that his brain received a vast multitude of sounds, above and beyond average for his age. Apparently, the filter mechanism that we normally have did not work for him. The ticking of a clock might sound as loud to him as us calling his name. No wonder his response to language was fluctuating.
Knowing that autistic people have very keen perceptions of the world, we thought that traveling and experiencing new surroundings could possibly be very enriching and joyful for John – as long as we could prevent sensory overload and be sure that John’s special needs can be met on the road, of course. Our idea was that seeing new places will offer John fresh access to the world, new possibilities to experience and fully live his special connection, and while he was doing so, he might learn that stepping out of your routines is a positive thing and a part of life.
“Welcome to Holland” is a well-known parable by Emily Perl Kingsley. Any parent of a child with disabilities has probably received this text numerous times via e-mail by well-intentioned friends and family. The parable dates back to 1987 and describes life with a handicapped child: expecting a child is like planning a trip to Italy. After months of preparation, the day has finally arrived, the suitcases are packed and you get on a plane. A few hours later, the plane lands and the flight attendant says: “Welcome to Holland!” You intended to go to Italy, but you have stranded in the Netherlands. Life there is slower and not quite as thrilling as the things you had heard of Italy. But after a while you realize that there are windmills and tulips, there’s even Rembrandt. You experience that Holland is quite wonderful, however it doesn’t change the fact that all of your friends are in Italy and rave about it. The text comes to the conclusion that you can mourn the loss of Italy for the rest of your life, but then you’d never be free to cherish special and wonderful Holland.
On the surface, the parable is conciliatory. After all, it’s also beautiful in Holland. Nevertheless, the text does establish a clear dichotomy: here Italy, there Holland. The family with a handicapped child is trapped in a different country: a ghetto in the end, no matter how many tulips you plant in it. There is a critical response to the parable on the Internet in which the ending is changed. The parents tear the Rembrandt off the wall, walk into a travel agency, take home brochures of Brazil, Greece, Egypt, Alaska, Japan and Tahiti, turn the globe and pick a destination with eyes closed. Farewell, Holland. It was only much later, long after having read both the parable and its response, and after having gone on many trips, that we came to realize: we literally put the critical response into action.
Citation by Dawn Eddings Prince (2010): “An Exceptional Path: An Ethnographic Narrative Reflecting on Autistic Parenthood from Evolutionary, Cultural, and Spiritual Perspectives.” In: Ethos. Journal of the Society for Psychological Anthropology, Vol. 38, Issue 1, American Anthropological Association.