From chapter 9, Frequently asked questions about autism
The reason is that the child doesn’t know there is any other way to be than the way she is. The child finds herself in a foreign country where she doesn’t understand the language that everybody else speaks. She views the world solely as things which surround her but which do not have anything to do with her.
When I was ten and saw that one person could say something that another person could understand, and the other person could reply with something that the first one understood, then I discovered a different reality that I hadn’t known about before. I saw that it existed but I had no idea how to have that kind of interaction with another person. What I did then was to practice by looking at myself in the mirror until I saw myself, until the state I was in changed to an interaction with myself; my appearance vanished, what I looked at vanished, and it was like something completely different was between me and the mirror image. And then my whole self-image was transformed. To start with this lasted only for a short while and then I returned to my normal way of seeing. But I had seen that the other reality existed, and I could see that the grownups were in it almost continuously. Also, I realized that I had always been separated from it. But when I was in the other state, in the real world, I was no longer separated from myself and from others.
I consider Iris Johansson the Temple Grandin of Sweden. Like Dr. Grandin Iris has built an amazing professional career starting from a very unpromising childhood. Dr. Grandin has unusual abilities in understanding the feelings of animals and developed them into a tool for designing effective and humane methods for handling cattle on feed lots and in slaughterhouses. Iris has an unusual ability to read people and pick up on what they are thinking and not saying. In her efforts to learn how to be “normal” she paid close attention to peoples’ behavior in different situations and learned how to pick up cues to the feelings that lay behind the behaviors. Thus, in spite of her inability to have feelings herself she is good at observing them in others. She recognizes the anger in the other person but it doesn’t trigger anger in her, she observes the joy in the other but it doesn’t make her joyful, she notes someone’s disapproval of something but it doesn’t cause her to disapprove of it. This almost clinical relationship to others has advantages in addition to the obvious disadvantage. Sure, in order to learn to “act normal” she had to devote much time and attention to learning and memorizing the reactions one is expected to have in different situations and in response to all the different feelings expressed, but at the same time all this effort has taught how her to read people and how they react to each other so much better than “normal” people. This is probably the reason she has been so successful in helping people with conflict resolution, communication problems, and various dysfunctions such as impulse control, addiction, and eating disorders.. In addition to mentoring care givers and parents of autistic children, she has channeled her unique ability to read peoples’ feelings into work with individuals and families, schools and reformatories, hospitals and jails. As a consultant and facilitator she has worked with governmental organizations and businesses on conflict resolution, communication issues, leadership development for women. By working with people in so many aspects of life over an international range of societies (in addition to Sweden she has worked in Norway, Finland, Russia, Estonia, Germany, and Albania) she has arguably had a greater impact on peoples’ lives.
In November 2009 The Atlantic magazine ran a series they called brave thinkers. At the top of their list, which included people like Ben Bernanke,Steve Jobs, and Barack Obama, was Thorkil Sonne of Denmark, the father of an autistic son, who started a company dedicated to hiring AS individuals. His business model is to market services that take advantage of the particular skill sets that people on the spectrum typically excel at such as sustained focus and attention to detail. Their website is at http://www.specialisterne.com/
From The Atlantic:
Name: Thorkil Sonne
Job: CEO and Founder of Specialisterne
Why he’s brave: He launched a software-testing company and staffed it with employees who have autism spectrum disorder.
Quote: “I think normality is whatever the majority decides it will be, and in our company people with autism are the norm.”
After his son Lars was diagnosed with autism in the late 1990s, Sonne had an epiphany. Autistics tend to have poor social skills and difficulty responding to stress or changes, which makes finding work a challenge (one study suggests that only 6 percent of autistic adults have full-time employment). But Sonne realized that they also tend to be methodical, possess excellent memories, and show great attention to detail and tolerance for repetition—in other words, they might make excellent software testers. With this in mind, Sonne launched Specialisterne, in Copenhagen, in 2004. Thirty-seven of its 51 employees have autism (though most have a mild form called Asperger’s syndrome). The firm now pulls in $2 million a year in revenue and serves clients like Microsoft and CSC. Sonne refuses to run the company like a charity: he competes in the open market and aims to make a profit. This makes government support unlikely, but it may lead to a sustainable new model for companies with disabled employees: Harvard Business School now uses Specialisterne as a case study in social-enterprise business. People on the autistic spectrum are not superhuman memory machines; but neither are they incapable of work. Sonne treats them as employees with strengths and weaknesses that smart employers should respect—and capitalize on.
This is the title of a post by Kate Goldfield on her aspiefrommaine blog http://www.freewebs.com/aspiefrommaine/mybaltimoresunarticle.htm
In it she talks about how AS people have trouble knowing what to say in conversations, when to start speaking and when to stop speaking.
In her book A different childhood Iris Johansson describes how she handled this problem by memorizing conversation starters and conversation enders as well as the structure of social conversations:
…She also practiced conversation starters. A good starter is: “Where are you off to?” or “Do you want come along …?” or “What do we do now?” or “How do you like …?”
…The problem was what if she got a return question. She learned to duck such questions by starting to tell about something, anything whatever. She had also figured out exactly how long she could talk before it started to bore the other one. She used to ask if the person was in a hurry because then she had to shorten her story.
When the other person in turn began to tell her about something Iris didn’t understand a thing. Everything in her thoughtless talk was without substance to Iris with no fixed points to focus on. Then she would wait until she heard a word that meant something to her. Then, when the other stopped talking Iris posed a question about that word: “You said something about…
…People loved to flaunt their knowledge and a good starter was to say: “Do you know anything about …” In this manner she could milk the other person for talk. Some people didn’t fall for it but on some others it worked very well. She started to seek out people she could talk with this way. She gathered up everything she learned and combined it with the old stuff she knew and created images and films in her head that she could call up when needed.
If the other kept talking too long, it got awkward and then Iris used one of her pre-learned enders: “It was nice to see you” or “Apropos of nothing …” or “By the way I have to …”. That way she could put an end to it.
It helped Iris that she has a practically a photographic memory, so she was always able to retrieve the information needed for the particular situation at hand.
My 6 year old son is in kindergarten and receives services (ABA) through the Special School District in Missouri. My son is on the autism spectrum and has a para with him throughout the day. He lately has not been completing his work – so last Wednesday I learned that they withheld his lunch from him until 2:00 until he did his work. I am sick about this. My son does not perform well when hungry and I thought ABA was supposed to be a teaching method based on positive rewards and not withholding basic needs as punishment. As anyone else come across this?!
Iris Johansson’s comments:
For us who have autism the issue is that we can’t use our feelings to understand and therefore both rewards and punishments are ineffective. If we get rewards we lose the idea of what we were supposed to learn and if we get punishments we get irritable and lose concentration. It is important to realize that we want to learn everything we can, but we have no feeling for something that is new to us. It takes us a long time until we have oriented ourselves and are able to put the new into an existing context and this doesn’t work the same way as for those who have feelings to lubricate the process with. We are not like children without autism, who are imprinted at a deep level, not by what someone says, but by what someone does. It’s not like that for us, we have to figure it on an intellectual level what we should do and then the tendency is that we slip back into the known and familiar, however wrong that may be, and then both rewards and sanctions tend to bind us in our stereotypy, instead of helping us make progress.
What is required for us to learn is that we get to watch somebody else doing it and that somebody teases out our interest in it and then we eventually do what is wanted but in our own peculiar way. So you are absolutely right, using reinforcement and sanctions is not a good method.
With Son-rise where somebody joins in the autistic persons stereotypy and continually opens it broadens it, that helps us become high functioning and it is without preconditions and therefore works. That way our nervous system releases the cramp a little and we get somewhat freer impulses that can flow and we can develop. Our body will not obey our intentions unless we can get our cramp released and the great task for those around us is to make it to help us be as cramp-free as possible, and that is not possible with sanctions.
From the book: …I preferred to be in my inner world, in what I later called “the real world” or “Out”. “The ordinary world” – the one you thought about if you were hungry, cold, longing, yearning – was very strange to me. Sometimes for short periods I ended up there and it was very unpleasant. It made my body feel like an unmoving piece of meat that often hurt. Then there were a lot of dangerous demons and horrible noises that scared the wits out of me. Then I would often scream, bang my head and scream until it quieted. The light was also so unpleasant in “the ordinary world”. Everything changed constantly, and my head burned and ached.
In “the real world” there was always a different kind of light, and it was very pleasant. In that world I associated with my friends. There were two of them, a light and a dark being; their names were Slite and Skydde. They were boys, but they didn’t look like people, they were beings, they were “sweeps”. You could think of them as a scrap of silk fabric that floats in the air, that sweeps through it, that sweeps through “The real world”. That’s what I was also: a sweepbut I didn’t see myself as light or dark.
A girl was born on a parsonage farm in Southern Sweden. (Parsonages in Sweden typically were farms owned by the church with a home for the pastor plus all the requisite adjunct buildings of a Swedish farm, often located near the church and cemetery. Since pastors were not normally farmers, the practice was to lease the farm to people who were.) It was in such a family the girl was born. Her name was Iris.
She didn’t feel pain, She didn’t speak
When she was still very young her dad noticed that the girl did not make contact with people around her. To help her in this he put her in a baby swing which he hung at eye-level in the doorway to the kitchen. This way everybody who came in to the kitchen could touch her, play with her and generally interact with her.
… I preferred to be in my inner world, in what I later called “the real world” or “Out”. “The ordinary world” – the one you thought about if you were hungry, cold, longing, yearning – was very strange to me. Sometimes for short periods I ended up there and it was very unpleasant. It made my body feel like an immobile piece of meat that often hurt. Then there was a lot of dangerous demons and horrible noises that scared the wits out of me. Then I would often scream, bang my head and scream until it quieted. The light was also so unpleasant in “the ordinary world”. Everything changed constantly, and my head burned and ached.
In “the real world” there was always a different kind of light, and it was very pleasant. In that world I associated with my friends. There were two of them, a light and a dark being; their names were Slite and Skydde. They were boys, but they didn’t look like people, they were beings, they were “sweeps”. You could think of them as a scrap of silk fabric that floats in the air, that sweeps through it, that sweeps through “The real world”. That’s what I was also: a sweep but I didn’t see myself as light or dark.