[Posted on 12th June, 2019 by Petra Linnsand and Gudrun Nygren]
My team and I meet autistic toddlers and their parents every day in the course of examination and treatment. Parents want to know how they can help their child and ask for concrete advice that they can use in everyday situations. Children have very different individual needs, which means that there are no truly general answers. There are often other difficulties besides autism that need to be addressed in the course of both examination and intervention, including quite major ones like sleep or eating problems. There may also be other medical conditions in need of treatment.
In this piece we would like to share our expertise and thoughts on this matter, drawing on both the current international state of research on toddlers with autism (ages 0-3) and our own experiences working in a multi-ethnic borough of Gothenburg.
The spontaneous drive for contact and communication with other people is one of the cornerstones of a toddler’s development and acquisition of skills. We learn by doing things together, imitating one another and taking turns. From an early stage, children with autism show a marked lack of social drive. Parents typically notice these difficulties in the child’s second year of life. Such problems include not reacting to their own name, late language development, avoiding eye contact and fixating on certain play activities. Preschool staff might notice that the child prefers to play on their own, rather than with the other children. The lack of social drive causes the child to have fewer opportunities to learn, which means that adults (parents, teachers and others) must try to create opportunities for communication and interaction.
A large number of studies stress the importance of early intervention in autism. There are many treatment and intervention models for children with autism, each with its own specific structure and point of emphasis. Most of these intervention models are comprehensive and based on applied behavioural analysis (ABA). They centre on the individual child’s development and include training manuals for different areas of development. Intervention measures are directed at both the core symptoms (communication and interaction) and other concurrent difficulties.
Current research suggests that very young children with autism (ages 0-3) respond best to intervention measures provided in a natural context, i.e. in social relations and daily activities. These intervention models are called Naturalistic Developmental Behavioural Interventions (NDBI) and they combine knowledge about the child’s learning and methods from developmental and behavioural science. One such model is Early Start Denver (ESDM), developed by Sally J. Rogers and Geraldine Dawson and evaluated in a number of research studies. ESDM is relationship-based, which is to say that it builds on the close relationship between parent and child. This model calls on parents and other adults to tap into the child’s own interests and motivation in order to create opportunities for interaction, play and communication in their daily activities. The key is to make these moments enjoyable, because children – and the rest of us, for that matter – learn more while having fun.
Our team uses ESDM and both of us writing this piece are certified ESDM therapists. During the examination process we provide all parents with strategies drawn from ESDM, i.e. how they can create opportunities for their children to interact, play and communicate in everyday life. In our experience, most parents benefit greatly from learning these strategies, regardless of what other intervention measures their children are getting. We implement the method in our treatment programme as well, making an individual plan for each child with specific goals and concrete learning steps. Adults surrounding the child, usually parents and educators, are given suggestions on how they can work towards these goals and create learning opportunities in daily activities. Letting children train in different environments with different adults also makes it easier for them to generalise their skills and learn to use them in many different contexts.
Many studies show the importance of early diagnosis and intervention in autism and other neurodevelopmental difficulties, but health care services struggle to meet these needs. Most places have long wait times for both examination and treatment. This is partly due to lack of resources, but also shortcomings in terms of how health care services are organised and how little most non-specialists know about children with autism. We need education efforts to improve people’s knowledge about early developmental difficulties, diagnostics and treatment opportunities. Clinicians, researchers and administrators alike must strive to collaborate more closely and develop our health care services in order to meet the demands we face.
In our clinical work we encounter many families who face a variety of challenges every day – children with complex neurodevelopmental symptoms that require many different treatment measures. There is no “one size fits all” treatment model for all potential needs – each individual family’s circumstances are simply too diverse for that. Many studies have produced findings echoing our own experiences, namely that parent participation and unified treatment measures are crucial to the child’s outcome. We need more studies examining exactly which specific measures are most suitable for different children. We need to keep learning more, not only by following the international research community but also by continuing to do more research of our own. Over the next few years, our team hopes to publish several studies based on our work with children and families in a multi-ethnic borough in Gothenburg.