Why are autistic people prone to bullying?
The other child - live with autism
A disturbance for some, a personality for others, and a challenge for all. This is autism. Every hundredth child in Switzerland is affected. What does that mean for the child? What for his parents? And above all: who will help?
Text: Sarah King
Pictures: Daniel Auf der Mauer / 13 Photo
A lama hums, the tone drawn out, a G maybe, beautifully in time, with every fourth step. After a while, a fifth higher joins a soft voice: "I ghöre äs Glöggli, that sounds so nätt (...)". The voice belongs to 9 year old Emilio. He shows no interest in the animals that do their laps in the garden of the Zollikofen school for the blind today instead of on the alp. Not even with the Lama by his side. Without looking at it, he walks next to him and sings. The harmonic duet is astonishing - especially Emilio, how he hits every note and word so precisely. The same boy is otherwise silent. Or he repeats the same three or four words over and over again. Emilio is autistic. One of up to 80,000 in Switzerland.
Autistic people perceive the world differently. With all their senses they are always on the receiving end, unable to block out unimportant stimuli.
There are no exact numbers in this country. According to international estimates, however, around 1 percent of the population is affected by autism, which also applies to Switzerland, as Ronnie Gundelfinger says. He is the senior physician at the Clinic for Child and Adolescent Psychiatry and Psychotherapy in Zurich. The number of diagnoses has risen sharply in the last few decades. In the 1970s, they received around 5 out of 10,000 people, today it is a good 20 times more. Various causes are assumed for the increase: better diagnostic tools, the introduction of the diagnosis of Asperger's Syndrome in the 1990s and greater attention on the part of professionals and parents, for example. So what is autism? And what does the everyday life of autistic children and their parents look like?
What is autism A diverse spectrum
Autism is a lot. For some it is a disturbance, for others it is a nature, for others it is a phenomenon of the times. Medically, it is a predominantly genetic developmental disorder that is associated with impaired social communication and interaction as well as with repetitive behavioral patterns and restrictive interests. Autistic people perceive the world differently than "neurotypical" (non-autistic) people. With all of their senses they are on the receiving end - depending on the degree of severity, they are unable to block out unimportant stimuli and focus on the whole from the detail. This can cause so much stress that they isolate themselves from the outside world.
Autism can be as clichéd as the character in the film "Rain Man", who memorizes an entire telephone directory in a few minutes. Or it is a single symptom, as the psychiatrist Eugen Bleuler ascribed it to schizophrenia in 1911: being-turned-in-oneself and turned away from the world. Even if we disregard Bleuler's view and limit ourselves to the child developmental disorder, as it was described from 1943 by the doctors Leo Kanner (early childhood autism) and Hans Asperger (Asperger's syndrome), autism fills a spectrum with as many forms as it does autistic people there. This is one of the reasons why the term “Autism Spectrum Disorder” (ASD), which was introduced in the Anglo-Saxon classification system DSM 5, is becoming increasingly popular in Switzerland.
Emilio and washing machines
Emilio is at the "difficult end" of this spectrum. He has autism in early childhood. For the time being, strangers see a normal 9-year-old. A pretty child with light brown curls. It seems a bit dreamy when Emilio walks across the meadow and looks closely at every twig. He looks dutiful when he walks back the way to close an open garden gate, cheeky when he points out to strangers that they are wearing two different colored socks and insists that they change this oversight. At the latest when he lies on the ground and screams because his understanding of order is mixed up, it becomes clear: Emilio is different. He has a profound behavioral and cognitive disorder.
Among other things, his language acquisition and self-motivation are limited. He needs 24 hour care. At night he keeps his mother Bruna Rausa awake, and during the day he employs several caregivers. Even as a baby, Emilio showed abnormalities, as his mother says: "He stiffened when someone took him in his arms and did not look people in the face." The gaze behavior is one of the clearest signs of ASS. "Research with autistic children has shown that they often find geometric figures more interesting on a screen than people," says autism expert Ronnie Gundelfinger.
Emilio was initially fascinated by the wheels of the stroller. Today it's washing machines. While other children flock to the school yard, he scurries into the laundry room and watches the spinning drums. Sometimes he repeats the same words, almost singing, that he has picked up minutes, hours or days before somewhere: «Het mi öppe öpper gärn? Het mi öppe öpper gärn? »
Asperger's - the silent majority
Not everyone is as badly affected as Emilio. Children with Asperger's Syndrome are less restricted, especially in the language and cognitive areas. But social communication problems also weigh heavily on them, as the psychologist Matthias Huber knows. He has Asperger's Syndrome himself. More professionals are needed to mediate and translate. (Read the interview with Matthias Huber here.)
The film “Amazing things happen” explains to children and their parents what autism is and how autistic people see the world.
Genetics play a role
Translating is part of Claudia Leupold's everyday life. She is sitting at the breakfast table with her husband and four of seven children. The two youngest - Quirin and Elea - chat about the upcoming school day.
14-year-old Julian withdraws to his room without a word. «Visiting changes the familiar structure. That irritates him, ”explains Claudia Leupold. Julian has been diagnosed with Asperger's Syndrome. So does his 12-year-old sister Mia. She cuts her bread - seemingly uninvolved, but vigilant: When the talk comes to drone flying, she discusses it.
Mia shares her passion for technology and computers with her father René Leupold. He is a software architect and developer. When he talks about digital transformation and sensors between sausages and scrambled eggs, the thought arises that he too is an Asperger. It is obvious, because according to Ronnie Gundelfinger, genetics play the main role in autism in addition to any environmental influences during pregnancy. "I did not allow myself to be clarified," says René Leupold, "but it probably is." His wife has no doubts: He is not good at expressing feelings. "He is the silent majority."
Mia also hides her feelings behind a mask-like face. Claudia Leupold learned to read them. "If she's not doing well, she slowly slips under the table." As a girl, Mia is a minority among autistic children. "Boys are more prone to developmental disorders and therefore more often affected by autism," says Ronnie Gundelfinger. “In girls, however, the diagnosis is sometimes missed or made late. They are less noticeable and try to adapt more. "
That applies to Mia. The parents ignored peculiarities: Mia didn't like having her hair done or she insisted on a few, familiar items of clothing. Even if they were worn out. The problems only became clear when she switched class to middle school: Mia increasingly refused school until she was 11 years old and no longer even went there. Clarification confirmed the parents' suspicion.
Everyday life full of challenges
It was a difficult time for Claudia and René Leupold. Their parenting methods have been questioned. If they refused therapy, they were considered unruly parents. In addition to bullying, quarrels and waking nights, round tables, lengthy therapies and financing issues were part of everyday family life. The canton and municipalities provide financial support in educational matters and the IV in medical matters - but until then it takes patience, as Claudia's example shows: She submitted a request to the IV for Julian and Mia to cover the costs of the medical measures. As required by the IV, she was able to prove that there were signs of ASA documented by the doctor up to the age of five.
The applications were nevertheless rejected. Claudia raised an objection. With success, but at the expense of your own strength. "We just worked." Even today the family functions - often in a positive way.
A detailed daily schedule hangs over the table. “The children know exactly what to expect,” says Claudia. If she needs support, she turns to the Nathalie Foundation's advice center in Gümligen BE. It was also she who clarified Mia for autism in cooperation with the child and adolescent psychiatric service in Bern.
Claudia will soon be happy again for advice. For Julian, the topic of training is getting closer. Like many other parents, Claudia has respect for that. Too few trainers and employers know about the abilities of autistic people. They are not only, but often, in the technical area. IT service providers do not miss this.
In Zurich and now also in Bern, the Computer Science Foundation for Autism offers training in the IT sector. In Bern, the Autism Link Foundation also takes care of professional integration, as does the Bern University of Education with its service for assisted vocational training (SUB). Young people and adults with an ASD receive, for example, IV-mediated coaching. Nevertheless: “Those affected and their relatives feel that they are not being supported enough. The offer does not cover the need ”, knows Fabienne Serna from the advice center“ Autismus deutsche Schweiz ”. The association supports and networks parents of autistic children, self-affected people and professionals. «There is a lack of autism-specific offers and jobs. »
An interest-driven school curriculum
Claudia doesn't like to think about that yet. «How are Mia and Julian supposed to find an apprenticeship? We recognize the potential of our children. But they have no grades. " They haven't been to school for a year. Mia only leaves the house if she is accompanied by her parents. Claudia now teaches her children herself. In addition, the mobile school comes into the house two mornings a week for two lessons each. “Homeschooling” is what the Zollikofen School for the Blind is called.
"If children can no longer be integrated into regular school despite being accompanied by learning, a curative teacher continues school work at home with the aim of finding connection to a setting in an elementary or special school," explains Christian Niederhauser, director of the foundation for the blind and visually impaired children and adolescents. Starting in summer, the school for the blind will also be offering a learning environment for six autistic, non-blind children on behalf of the canton: They work in groups to promote their sense of community.
At the same time, it is possible to work individually with the children in a separate room. In addition to the Zollikofen School for the Blind, more and more schools across Switzerland are developing autism-specific offers. In doing so, they act according to their needs, as Andreas Eckert, professor at the Intercantonal University for Curative Education in Zurich, shows in several studies. For children with early childhood autism there is a need for more places in autism-specific facilities.
Children with Asperger's Syndrome, on the other hand, would benefit from integrative education. Whether regular or special schools - school work with autistic children is a challenge. "Learning to let go", recommends Christian Niederhauser to his employees. "The trick is that the teacher does not feel obliged to pursue an educational goal that cannot be achieved, but starts where the child shows interest."
Psychotherapy instead of dolphin swimming
A look into Emilio's classroom shows that he is interested: he is lying on a cube. «Sibe chugelrundi Söi, liged next to the Höi. You grunt, you smack ... », a song sounds from the loudspeakers. Emilio's attention phases are short, says his teacher Melanie Radalewski. The psychologist teaches Emilio in the mornings in an individual setting. In the pauses between the songs, Emilio collects energy for the next learning unit. Today he is focused: on the instructions of his teacher, he writes the word sun on the blackboard letter by letter. He owes this ability to intensive therapy: He receives three times three hours of behavioral therapy a week.
Emilio is one of around
80,000 autistic people in Switzerland. There are no exact numbers.
Finding the right therapy is a challenge. The offer ranges from psychotherapeutic measures and special diets to dolphin therapy and medication. Ronnie Gundelfinger doesn't believe in swimming with dolphins. There is also no healing drug. "The accompanying symptoms are treated with medication."
For example, many autistic children would have ADHD symptoms and would benefit from Ritalin. For the expert, however, it is clear: “The only approaches that we know to be effective are therapy programs specifically developed for autism. Behavioral therapy is the best studied. The early start and the high intensity of the treatment play a decisive role. »
Individual aspects of the autistic disorder can be treated with occupational therapy or speech therapy. In addition, many special education schools in Switzerland work with the TEACCH method (Treatment and Education for Autistic and related Communication handicapped Children). More intensive therapies are often based on the behavioral approach ABA (Applied Behavior Analysis).
Emilio knows the latter well. At the moment he is sitting with his ABA therapist Jessica Stauffacher bent over tasks that promote his linguistic, cognitive, motor and social skills.
In girls, the diagnosis of autism is often missed or delayed. Girls are less noticeable and are more likely to try to adapt.
The room is darkened. Emilio is very sensitive to light. “What do you want to work for,” asks the psychologist, “for a syrup or for the shaggy bear? »For his desired« Zoggubär »break, Emilio first has to put cards from a picture story in the right order. Then he sits down on the sofa and watches as the bear sails through the room to finally land on his stomach. Emilio is enthusiastic about the game. Then the next task is due. And the next reward. The whole thing is somewhat reminiscent of an act of dressage. "That is the most common criticism," says Jessica Stauffacher. Emilio responds well to this approach, however. "He stays seated longer than before, solves some tasks more easily and also hardly shows any aggressive behavior."
Therapy: the earlier, the better
Emilio started his therapy when he was four years old. The trend today is different: studies indicate the benefit of starting therapy as early as possible. There are six early intervention centers in Switzerland - for example the FIAS in Basel, which emerged from the Israeli Mifne approach in 2010 and accepts children between the ages of 1.5 and 4. However, the early interventions are not currently available to all autistic children. For some parents, the effort is too great - be it because of the trip or because of the costs.
The IV finances a flat rate of 45,000 francs for the intensive treatment of early childhood autism in one of the six early intervention centers. However, the amount does not cover the total cost. In FIAS, for example, 3-week intensive treatment with 2-year follow-up care costs 90,000 francs. Diagnoses are often made too late for early intervention.
"Before the age of 4, it is difficult to get a diagnosis," says Emilio's mother, Bruna Rausa. “I realized from the start that something was wrong with my baby. A.Pediatricians sometimes fail to recognize the early signs.»
Emilio was finally 3 years old when his ASD was confirmed by a doctor. Ronnie Gundelfinger usually gives the diagnosis of autism from the age of 2.5. Sometimes the signs are clear earlier. "But nobody finances the treatment of a 1-year-old child." It is also questionable to push early diagnoses. "The range of early interventions is stagnating in Switzerland."
So there is not enough space. "For each canton, it should be ensured that at least one autism competence center is available with capacities to meet the needs." Among other things, the Federal Council recommended this in 2015 in response to a postulate by Claude Hêche to improve the situation of autistic children and their environment. The ideas are there.
Implementation takes time. Emilio takes it. His therapy is over. The mother is waiting. The therapist is waiting.And Emilio? He goes back to the therapy room. The blinds are not all drawn up evenly. He carefully remedies the defect, absorbed in his low singsong: “I gaa itz, bye. I gaa itz, bye. "
Book and film
- Louis. Loaf. By Res Brandenberger (2014). Landverlag, Langnau. A novel about Louis, an autistic boy who embarks on a long journey into a new world from his home village of Trubschachen.
- Autism with a difference. Simple, authentic, autistic. By Aleksander Knauerhase (2016). Books on Demand GmbH, Norderstedt. The author is autistic himself and describes his sometimes challenging life with an autism spectrum disorder.
- Shadow jumpers. What it's like to be different. By Daniela Schreiter (2014). Panini Publishing House. In a kind of drawn diary, the author describes how she experienced her childhood and youth as an Asperger's autist. A second volume, “Schattenspringer 2”, was published in 2015.
- Autism Spectrum Disorders in Switzerland. Living situation and professional support. By Andreas Eckert (2015). Foundation Swiss Center for Curative and Special Education (SZH) Bern. On the basis of a parent survey, the author shows in this research report findings and developments in the field of autism spectrum disorders.
- Sesame Street (American version of the children's series “Sesame Street”). Has had the 4-year-old autistic Julia as a new character since April 2016. This initiative aims to make the youngest in society aware of autism and to better integrate autistic children.
- Life Animated. By Ron Suskind (2016). The film shows how the silent, autistic Owen Suskind uses Disney characters to gain access to the outside world.
About the author:
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