«I wish they wouldn't leave us hanging like this.»
Nian (11), the son of Karin (41) and Michael (40) from Rüderswil in the canton of Bern, has Asperger syndrome. The challenges associated with this condition led the family into isolation, from which a dog eventually rescued them.
Karin: «Nian is the youngest of our three children – and was the easiest baby.»
Michael: «You could put him down anywhere, and he would stay there, looking up at the sky, content.»
Karin: "Everything changed when he started walking at eleven months. Nian didn't listen to us, ran away constantly and knew no fear. He also found it difficult to communicate with other children: he would simply grab things out of their hands or hit them if things didn't go his way. We were at a loss to explain it: we are not laissez-faire parents, but have clear values about how to treat each other."
Michael: "Measures that had worked with the older two – explaining the child's misbehaviour, sending them to their room, making an announcement – had no effect."
Karin: "He often refused to go to playgroup and would not get into the car. He didn't know what to do with toys – except for certain toy cars, where he would turn the wheels and open and close the doors. But only real vehicles really interested him. When my brother came home from work in his minibus in the evening, Nian would spend an hour playing with it, fiddling with the horn and the radio and looking for the keys to start the engine. He was obsessed with keys, we had to lock everything away."
A second clarification provides clarity
Michael: «If the bus ritual didn't work, all hell broke loose. The same thing happened at lunchtime if I was early and he wasn't standing behind the front door on time to scare me.»
Karin: "The paediatrician noticed that there was a big gap between Nian's cognitive abilities and his social behaviour. He arranged for an assessment, which only resulted in suspected diagnoses. Autism was not one of them. We tried setting even more rules and boundaries. The cantonal educational counselling service said that Nian should start nursery school."
Michael: «After a short time, the kindergarten teacher recommended a second assessment and submitted a request to the University Clinic for Child and Adolescent Psychiatry. The diagnosis, they said, was crystal clear: Asperger syndrome.»
Families need more accessible advice and support regarding respite services, dealing with authorities, school, and practical everyday tips.
Karin, mother of Nian
Karin: "The nursery teacher emphasised clear structures, which meant that Nian could have a reduced workload. But even then, he would sometimes sneak off unnoticed, and from then on I was always on call. We hardly dared leave the house for fear that he might run away."
Michael: «He felt very guilty towards his siblings. That was when Benji came to us. Nian's assistance dog is trained to track him down in an emergency. Benji brought us out of isolation.»
Overwhelmed in mainstream school
Karin: "When school started, we had to fight for an assistant, writing letters all the way up to the cantonal level. Because I pushed hard, Nian ended up with one-to-one support. He still needs it today. The assistant helps Nian regulate his emotions, mediates in social situations , practises asking for help when things are unclear – which he finds very difficult – and plans steps to take, for example when doing a task. Nian relies heavily on structure."
Michael: " We use pictures to visualise everything that needs to be done during the week – from lunch to doctor's appointments."
Karin: «At some point, it became clear to everyone that mainstream school was completely overwhelming for Nian, despite his reduced workload. Since last summer, he has been attending a special school where the majority of the children have been diagnosed with autism or ADHD.»
Michael: «Nian has both. The hyperactivity typical of ADHD eventually collides with his autism, his need for isolation and peace and quiet. Then it all comes crashing down.»
Karin: " Nian can only attend school in the mornings. I have to be on call in case things escalate. The school didn't implement his visual aids at first, which led to a lot of problems. Now he can refer to a plan with pictograms."
Michael: «We have informed those around us about the challenges associated with Nian's diagnosis. The children in the neighbourhood accept him as he is. He sets the tone when they play. That works well until the others lose interest. Then he looks for new playmates among the younger children. It's lucky that there are so many children living here.»
Karin: «Families need more accessible advice and support when it comes to respite services, dealing with the authorities, school and practical everyday tips. We had to figure everything out on our own. I wish they didn't leave us parents in the lurch like this.»
