The previous two articles have touched upon the challenges faced by parents when their children ‘mask’ or hide their difficulties in the classroom. In the course of assessments and therapy with families, many parents have reported feeling blamed and judged when it appears that whatever they seem to try with their children does not work, whereas at school they perhaps behave like the model child.
For many children on the Autistic Spectrum, though, this is far from the case. For some parents that feeling of dread when they receive the phone call from school or the teacher comes to find them at the school gate to talk about their child’s behaviour, is all too frequent. It impacts upon their self-esteem, their confidence as parents and ultimately on their ability to hold down a job – how many employers are able to be sympathetic and that flexible?
A high number of children on the Autistic Spectrum, particularly those with PDA, will be temporarily (and sometimes permanently) excluded from school. To be fair, if the child is so distressed that they are putting themselves, or others, in danger as a result of their behaviour, this is probably the only option schools have.
However, all behaviour is a form of communication. Children on the Spectrum who are throwing furniture around or hitting their teachers and peers are not ‘naughty’, they are distressed. They often do not have the words to express how they are feeling, or the social imagination to predict the consequences of what they are doing.
School staff often feel at a loss to know what to do for the best. Children with Autism struggle with change and will often find a change of routine, or teacher, unbearably anxiety-provoking, but often with the support of visual timetables and clear structure, many can cope. Those who appear to experience the greatest difficulty are the children with PDA. Everyday demands are often unbearable and they can quickly escalate into full ‘meltdown’. This can include screaming, punching, kicking and biting or running out of the class. Some children might need to be restrained for their own safety which is distressing for both the child and the staff, who even if they have received appropriate training, often feel uncomfortable.
The following strategies may help some of these children to succeed at school. They are taken partly from the National Autism Standards, ‘The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance: Guidelines for Good Practice’, produced by Phil Christie, who was formerly the Director of Children’s Services at the Elizabeth Newson Centre in Nottinghamshire, and partly from advice and guidance from the staff at the Robert Ogden School, a National Autistic Society School in Doncaster who have experienced good outcomes with children with PDA.
Children with a demand avoidant profile tend to under-perform in terms of their potential, due to their anxiety and need for control. Key issues for any school will be how best to create an environment where they feel comfortable, can be kept on task, and disrupt the other children as little as possible. This can be tricky as the type of environment and management they need will not be a typical classroom environment for many. By making changes, it may feel that these children are ‘getting their own way’ and being given privileges the other children are not. Simply, trying to make them comply is unlikely to work – schools have to work to find a balance and this is often a challenge. Help for Psychology run courses for both parents and teachers and we are well aware of how hard it can be to accommodate the needs of a very distressed and anxious child. (Full details of our training courses are on our website.)
The guidance states that teachers need to be ‘flexible and adaptable’. Children with PDA find direct instructions and demands difficult. Again this can be a challenge if you are a teacher, working within the confines of the National Curriculum with 30 other children in the class. However, they often can cope if they are provided with options – ‘would you like to do X first or Y?’ The expectation is, of course, that they need to do something but at least giving them a choice can reduce the demand somewhat.
Also, unlike children with more classic forms of Autism, providing lovely visual timetables and schedules are unlikely to be effective for children with PDA. Quite often the anxiety provoked by worrying about what is going to happen leads the child to sabotage the activity rather than deal with those uncomfortable feelings. This can be very difficult for both parents and teachers to understand, particularly if the activity is something you know they would enjoy, but talk to any adult with PDA and they will confirm that the stress of expectations (both their own and those of other people) can be simply unbearable. Rewards and positive reinforcement for appropriate behaviour can often provoke the same reaction because if you do well once, the expectation (and therefore the demand) to do the same next time is also a challenge.
Finally for part one of this topic, both parents staff working with children with PDA need to be aware that what works one day may not work the next. Everyone may be congratulating themselves and feeling that they have turned a corner when suddenly – boom, everything explodes and you are back to square one. Everything depends upon the level of anxiety at any given time. The less the anxiety, the more co-operative the behaviour, the higher the anxiety, the more likely you are to see challenging behaviour.
Part two of this article will look at ways in which school staff can help to build emotional resilience in children on the Autistic Spectrum, what to look out for in terms of mental health issues, and how to avoid burnout when working one to one with a child with PDA.