One in 100 babies are born with an autistic disorder. Original methods are being developed to detect symptoms and provide care for children. Here we present examples in Lausanne and Geneva.
In the French film The Specials (Hors Normes), directors Olivier Nakache and Éric Toledano wanted to present a more accurate view of autism spectrum disorders. Alongside professional actors such as Vincent Cassel, they worked with people who are truly autistic, sometimes with severe cases. This was a whole new approach in filmmaking, which until then tended to portray autistic characters with spectacular mental abilities, as in Rain Man. “However, those cases are a minority,” says Nadia Chabane, director of the Cantonal Centre for Autism (CCA) in the Canton of Vaud. “Quite the opposite, in fact. Most have significant mental disabilities, difficulty expressing themselves, and may even be unable to form sentences.”
In Switzerland, the percentage of people with autism is between 0.8% and 1% of the total population. According to a 2018 report from the Swiss Federal Council, more than 25% of cases show that a significant autistic disorder began in childhood. “The exact causes are not clearly understood, and the boundaries of autism are constantly changing,” the authors write. “However, we now know that it’s a neurodevelopmental disorder.” Autism spectrum disorders (ASD) cannot be cured but can be managed. Early intervention has been explored in recent years in Switzerland. An initial centre was opened in Geneva in 2010 focusing on a method of early intervention developed by American psychologists Sally Rogers and Geraldine Dawson. The Early Start Denver Model (ESDM) is a behavioural programme in which a therapist works one on one with a child 20 hours per week for two years. The young patients are stimulated to help them build basic communication and social skills. A 2014 pilot project brought together six centres across Switzerland (including the one in Geneva) to measure the efficacy of this intensive method. In Lausanne, the CCA has been recognised by disability insurance since last year and is now part of the programme to study the effects of an intensive early intervention model on the child’s integration.
“We need to focus on diagnosis for this type of programme to work best,” Nadia Chabane says. “And that requires close collaboration between paediatricians, educators and autism experts.” Despite a wide range of manifestations, the common denominator in ASD is impaired communication and social interaction combined with restricted interests and repetitive behaviours. And that diagnosis is based on a long series of tests.
Tools, such as eye-tracking systems, have been developed to facilitate testing. An infrared sensor records the patient’s eye movement while viewing a cartoon. “The gaze of children on the spectrum does not remain fixed on the characters’ exchange of glances, as would be expected, but on extraneous objects that have nothing to do with what’s happening in the social interaction,” says Marie Schaer, University of Geneva researcher and autism expert.
Once diagnosed with ASD, the child can integrate a specialised early intervention centre. “The key is to act at the time when brain plasticity is highest,” Nadia Chabane says. Between age 2 and 4, the child’s brain has the capacity to adapt, which makes our action more effective.” The CCA branch within the Lausanne University Hospital (CHUV) complex is run by a multidisciplinary team and has a capacity of 10 spots to receive children 20 hours per week. The centre looks much like any childcare facility, but with a few modifications. For example, therapy rooms are minimalist, almost completely stripped of distractions to help the young patients focus on one thing at a time. Objects designed to capture their interest are within their view but not their reach. “This configuration aims to stimulate communication and teach children to name what they want,” says Chloé Peter, a psychologist at the centre.
The day is structured around individual sessions, in which each child works with a therapist, and activities to help them develop their independence, especially during meals. “Eating can be complicated for people with autism spectrum disorders. For example, they are often extremely selective when it comes to different textures of food. Sensory activities focusing on the mouth and oral space before mealtimes can alleviate their extreme sensitivity.” The children learn to manage everyday activities through individual sessions with educators, psychomotor and speech therapists, who work in close collaboration. The main objective is to provide the child with the tools needed to enter regular school.
The programme costs between 100,000 and 150,000 Swiss francs per year and per child. Disability insurance, which has recognised the Vaud centre, currently covers 45,000 Swiss francs per case, with the rest taken up by the cantons and municipalities. The high cost should be considered in relation to the effectiveness of the programme. In its report on autism spectrum disorders, the Swiss Federal Council states that if just 2% of participants in the early intervention programme acquire the tools to live independently, the investment would pay for itself. Care for an adult with ASD is estimated at 25,000 Swiss francs per month. Spanning 50 years, that comes out to 15 million Swiss francs.
Outside Switzerland, numerous studies have shown the economic advantages of early intervention programmes. For example, work led by Nienke Peters-Scheffer, a behavioural science researcher at the Radboud University in the Netherlands, concluded that these programmes saved an average of €1.1 million per person with autism. /
An article published in the September 2019 issue of NZZ, a Zurich-based publication, points to the weaknesses in early care strategies. To start with, the number of children in care is criticised. In Switzerland, only 190 places are available in intensive care centres. Others will only have one hour of in-home monitoring per week. Centre accessibility is also a problem for families that do not live in the vicinity and can lead to significant travel costs. What’s more, in the same article autism expert Monika Casura questions the transition from centre to school. Will a child used to having structured care from adults 20 hours a week be able to adapt to a class of 20 children?
Autism itself is the subject of controversy, but so is the support offered by disability insurance. Other forms of disability do not benefit from such privileges. Psychiatrist Thomas Girsberger believes there are consequences to this support. In unclear cases, paediatricians might direct their diagnosis towards autism, because better therapies are offered than for other disorders. Marie Schaer, who is active in autism research at the University of Geneva, believes these critiques should be put in perspective. “Switzerland lags behind other countries. Many studies show that the investment actually pays off. In Geneva, the cost of this intensive monitoring is estimated to cover itself as of the middle of the third year of regular schooling, and between the sixth and seventh year if the child attends a specialised school.”