What does everyday life look like with a child on the autism spectrum?

A llama hums, the note drawn out, a G perhaps, nicely in time, every fourth step. After a while, a quiet voice a fifth higher joins in: «I ghöre äs Glöggli, das lütet so nätt (...)». The voice belongs to 9-year-old Emilio. He shows no interest in the animals that are doing their rounds in the garden of the Zollikofen School for the Blind instead of on the alp today. Not even the llama at his side. Without looking at it, he walks alongside it and sings. The harmonious duet is astonishing - especially Emilio's ability to hit every note and every 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. There are no exact figures in this country. According to international estimates, however, around one per cent of the population is affected by autism, which also applies to Switzerland, as Ronnie Gundelfinger says. He is a senior physician at the Clinic for Child and Adolescent Psychiatry and Psychotherapy in Zurich.

The number of diagnoses has risen sharply in recent decades. Whereas in the 1970s around 5 in 10,000 people were diagnosed with the disorder, today the figure is a good 20 times higher. Various reasons are assumed for the increase: better diagnostic tools, the introduction of the diagnosis of Asperger's syndrome in the 1990s and greater awareness on the part of professionals and parents, for example.

So what is autism? And what does everyday life look like for autistic children and their parents?

Autistic people perceive the world differently. They are always on reception with all their senses, unable to block out unimportant stimuli.

Autism: a diverse spectrum

Autism is many things. For some it is a disorder, for others it is a personality trait, for others it is a phenomenon of the times. Medically, it is a predominantly genetically caused developmental disorder that is associated with impaired social communication and interaction, repetitive behaviour patterns and restrictive interests.

Autistic people perceive the world differently to «neurotypicals» (non-autistic people). They are on reception with all their senses - depending on the degree of severity, they are unable to block out unimportant stimuli and focus their attention from the details to the big picture. 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 learns an entire phone book by heart in a few minutes. Or it can be a single symptom, as the psychiatrist Eugen Bleuler attributed to schizophrenia in 1911: an introverted state of being turned away from the world.

Even if we disregard Bleuler's view and limit ourselves to the childhood developmental disorder as described from 1943 by the doctors Leo Kanner (early childhood autism) and Hans Asperger (Asperger syndrome), autism fills a spectrum with as many manifestations as there are autistic people. This is one of the reasons why the term «autism spectrum disorder» (ASD), introduced in the Anglo-Saxon classification system DSM 5, is increasingly gaining acceptance in Switzerland.

Coloured socks and washing machines

Emilio is at the «severe end» of this spectrum. He has early childhood autism. Strangers initially see a normal 9-year-old. A pretty child with light brown curls. It seems a little dreamy when Emilio walks across the meadow and scrutinises every branch. He looks dutiful when he goes back the way he came to close an open garden gate, cheeky when he points out to strangers that they are wearing two different coloured socks and insists that they change this mistake. At the latest when he is lying on the floor and screaming because his understanding of order is confused, it becomes clear: Emilio is different. He has a profound behavioural and perceptual disorder.

Among other things, his language acquisition and self-motivation are limited. He needs 24-hour care. He keeps his mother Bruna Rausa awake at night and has several carers during the day (read Emilio's mother's testimonial here: My child is autistic). Even as a baby, Emilio showed abnormalities, as his mother says: «He stiffened when someone picked him up in their arms and wouldn't look people in the face.» Gaze behaviour is one of the clearest signs of ASD. «Research with autistic children has shown that they often find geometric figures on a screen more interesting than people,» says autism expert Ronnie Gundelfinger.

Emilio was first fascinated by the pram wheels. Today they are washing machines. While other children stream into the playground, he scurries into the laundry room and watches the spinning drums. Sometimes he repeats the same words that he has picked up somewhere minutes, hours or days before, almost singing: «Het mi öppe öpper gärn? Do you like me too much?»

Asperger's - the silent majority

Not everyone is as severely affected as Emilio. Children with Asperger's syndrome are less restricted, particularly in the areas of language and cognition. But they also have severe social communication problems, as psychologist Matthias Huber knows. He has Asperger's syndrome himself. More specialists are needed to mediate and translate. (Read the interview with Matthias Huber here).

Translating is part of Claudia Leupold's everyday life. She sits at the breakfast table with her husband and four of her seven children. The two youngest - Quirin and Elea - are chatting about the upcoming school day. 14-year-old Julian retreats to his room without a word. «Visitors change the usual structure. It irritates him,» explains Claudia Leupold. Julian has been diagnosed with Asperger's syndrome. So does his 12-year-old sister Mia. She spreads her bread - seemingly uninvolved, but alert: if the conversation turns to drone flying, she joins in the discussion.

Genetics plays a role

Mia shares a passion for technology and computers with her father René Leupold. He is a software architect and developer. As he talks about digital transformation and sensors between sausages and scrambled eggs, the thought arises that he is also Asperger's. It stands to reason, because according to Ronnie Gundelfinger, genetics play the main role in autism alongside any environmental influences during pregnancy. «I didn't have myself tested,» says René Leupold, «but it's probably the case.» His wife doesn't doubt it: he can't express his feelings well. «He is the silent majority.»

Mia also hides her feelings behind a mask-like face. Claudia Leupold learnt to read her. «If she's not feeling well, she slowly slips under the table.» As a girl, Mia belongs to the minority of autistic children. «Boys are more susceptible to developmental disorders and are therefore more frequently affected by autism,» says Ronnie Gundelfinger. «In girls, however, the diagnosis is sometimes missed or delayed. They stand out less and try to adapt more.»

This applies to Mia. Her parents overlooked her idiosyncrasies: Mia didn't like having her hair done and she insisted on wearing a few familiar items of clothing. Even if they were worn out. The problems only became apparent when she moved up to middle school: Mia increasingly refused to go to school until she stopped going at the age of 11. An assessment confirmed the parents' suspicions.

Everyday life with autism is full of challenges

It was a difficult time for Claudia and René Leupold. Their parenting methods were called into question. If they refused therapy, they were seen as unruly parents. In addition to bullying, quarrels and wakeful nights, round tables, lengthy therapies and financial issues were part of everyday family life.

Although the canton and municipalities provide financial support in educational matters and the IV in medical matters, it takes a lot of patience to get there, as Claudia's example shows: she applied to the IV for the costs of medical measures to be covered for Julian and Mia. As required by the IV, she was able to prove that there were documented signs of ASD from a doctor up to the age of five. The applications were nevertheless rejected. Claudia lodged an appeal. Successfully, but at the cost of her own strength. «We were just functioning.» The family still works today - often in a positive sense.

Getting to school is a challenge. A Coke lid on the floor, an open garden gate - Emilio wants to tidy things up immediately.

A detailed daily schedule hangs above the table. «The children know exactly what to expect,» says Claudia. If she needs support, she turns to the Nathalie Foundation's counselling centre in Gümligen BE. She was also the one who assessed Mia for autism in collaboration with the Bern Child and Adolescent Psychiatric Service.

Soon Claudia will be glad of counselling again. For Julian, the topic of training is getting closer. Like many other parents, Claudia has respect for this. Too few trainers and employers are aware of the abilities of autistic people. They are not only, but often in the technical field. IT service providers are not unaware of this. In Zurich and now also in Bern, the IT Foundation for Autistic People offers training in the IT sector.

In Bern, the Autism Link Foundation also takes care of vocational integration, as does the Bern University of Teacher Education with its Service for Supported Vocational Training (SUB). Young people and adults with ASD receive IV-funded coaching, for example. Nevertheless: «Those affected and their relatives feel that they receive too little support. The offer does not meet the need,» says Fabienne Serna from the «autismus deutsche schweiz» advice centre. The association supports and networks parents of autistic children, people affected by autism themselves and professionals. «There is a lack of autism-specific services and workplaces.»

An interest-led curriculum

Claudia doesn't want to think about that yet. «How are Mia and Julian supposed to find an apprenticeship? We recognise our children's potential. But they can't show any grades.» They haven't been going to school for a year. Mia only leaves the house with her parents. Claudia now teaches her children herself. In addition, the mobile school comes to the house two mornings a week for two lessons each.

«Homeschooling» is the name of the programme offered by Zollikofen School for the Blind. «If children can no longer be integrated into mainstream school despite learning support, a remedial teacher continues the school work at home with the aim of finding a connection to a setting in a primary or special school,» explains Christian Niederhauser, Director of the Foundation for Blind and Visually Impaired Children and Young People. From the summer, the school for the blind will also offer 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 with the children individually in a separate room.

In addition to the Zollikofen School for the Blind, more and more schools across Switzerland are developing autism-specific programmes. As Andreas Eckert, professor at the Intercantonal University for Special Needs Education in Zurich, has shown in several studies, they are responding to demand. More places in autism-specific centres are needed for children with early childhood autism. Children with Asperger's syndrome, on the other hand, would benefit from inclusive schooling.

Whether in a mainstream or special school, working with autistic children at school is a challenge. «Let go of learning,» Christian Niederhauser recommends to his employees. «The trick is for the teacher not to feel obliged to achieve an educational goal that cannot be realised, but to start where the child shows interest.»

Psychotherapy instead of dolphin swimming

A glance into Emilio's classroom makes his interest clear: he is lying on a cube seat. «Sibe chugelrundi Söi, liged näbenand im Höi. They grunt, they smack their lips ...» a song plays from the loudspeakers. Emilio's attention spans are short, says his teacher Melanie Radalewski. The psychologist teaches Emilio in a one-to-one setting in the mornings. During the song breaks, Emilio gathers energy for the next learning unit. Today he is focussed: Following his teacher's instructions, he writes the word sun on the board letter by letter. He also owes this ability to intensive therapy: he receives three hours of behavioural therapy a week.

Finding the right therapy is a challenge. The options range from psychotherapeutic measures and special diets to dolphin therapy and medication. Ronnie Gundelfinger does not believe in swimming with dolphins. There is also no such thing as a cure. «The accompanying symptoms are treated with medication.»

For example, many autistic children exhibit ADHD symptoms and benefit from Ritalin. For the expert, however, it is clear: «The only approaches that are known to be effective so far are therapy programmes developed specifically for autism. Behavioural therapies are the best studied. The early start and high intensity of the treatment play a decisive role here.»

Individual aspects of the autistic disorder can be treated with occupational therapy or speech therapy. In addition, many curative 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 behavioural therapy approach ABA (Applied Behaviour Analysis).

A dressage act?

Emilio knows the latter well. He is currently sitting with his ABA therapist Jessica Stauffacher, bent over tasks that promote his language, cognitive, motor and social skills. The room is darkened. Emilio is very sensitive to light. «What do you want to work on,» 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. He then sits down on the sofa and watches as the bear sails across the room to finally land on his tummy. Emilio enthusiastically gives himself over to the game. Then it's time for the next task. And the next reward. The whole thing is a bit like a dressage act. «That's the most common criticism,» says Jessica Stauffacher. However, Emilio responds well to this approach. «He stays seated longer than before, solves some tasks more easily and also hardly shows any more aggressive behaviour.»

The earlier autism is diagnosed, the better

Emilio started his therapy at the age of four. The trend today is different: studies point to the benefits of starting therapy as early as possible. There are six early intervention centres 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.

The blinds in the therapy room are not raised evenly. Emilio carefully rectifies the problem.

However, early interventions are not currently available to all autistic children. For some parents, the effort is too great - either because of the journey or because of the costs. The IV does fund a lump sum of CHF 45,000 for the intensive treatment of early childhood autism in one of the six early intervention centres. However, this amount does not cover the total costs. At FIAS, for example, the 3-week intensive treatment with 2-year aftercare costs CHF 90,000.

Too few seats

Diagnoses are often made too late for early intervention. «It's complicated to get a diagnosis before the age of 4,» says Emilio's mum Bruna Rausa. «I recognised from the start that something was wrong with my baby. But paediatricians sometimes don't recognise the early signs.» Emilio was finally 3 years old when his ASD was medically confirmed.

Ronnie Gundelfinger usually diagnoses autism from the age of 2.5. Sometimes the signs are clear even earlier. «But no one will fund the treatment of a one-year-old child.» It is also questionable to push early diagnoses. «The availability of early intervention is stagnating in Switzerland.» So there are not enough places.

«It should be ensured that each canton has at least one autism competence centre with sufficient capacity to meet demand.» This was one of the recommendations made by the Federal Council 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. His mother is waiting. The therapist is waiting. And Emilio? He goes back into the therapy room. The blinds are not all pulled up evenly. He carefully fixes the problem, absorbed in his soft singsong: «I gaa itz, bye. I gaa itz, bye bye.»