Following a diagnosis of autism spectrum disorder, ‘What do I do next?’ is the question that has certainly been asked by every parent of a child with an autism spectrum disorder (ASD).
In many cases, it comes after the ‘what is autism?’ and ‘how did it happen?’ Unfortunately, just as with the first two questions, the answer isn’t very satisfying. Although many treatments and therapies are proposed to help, few have been studied enough to know whether they really do (or don’t) work, and for which children. This reality is frustrating and confusing for families and professionals caring for children with ASD.
Many studies have shown that ASD and similar behavioural interventions can improve intelligence test scores, language skills, and academic performance of young children with ASD. Some studies have also shown some measure of improvement in behaviour or personal and social skills, while others have not. One issue has been generalization – that is, there has not been much evidence to show that children can transfer the skills they have learned through behavioural interventions to contexts outside the setting in which skills are acquired.
Many children taking part in these programs make significant strides. It is clear at this point, however, that such interventions do not result in a great number of affected children achieving ‘normal’ developmental status, as was once claimed.
Beyond the specific nature of any one approach, there are many other factors that may influence the outcomes of early intervention programs, such as location (home-based versus centre-based), duration and intensity of therapy, the experience of the provider, and the involvement of parents. In addition, characteristics of the child (such as age, symptoms, and severity of the disorder) also affect the potential benefits of therapy. Despite the many unknowns, most care providers believe that the earlier the child begins intensive intervention, the better the outcome.
Dr Kukendrarajah requests nursery or school reports or questionnaires for teachers and parents or carers, as well as reports from previous assessments (such as those from psychologists or therapists). Sometimes parents prefer not to involve the child’s school and she understands there can be difficult situations. However, it is important to say that without another independent opinion of the child (even if there are conflicting viewpoints!) it might be difficult to arrive at a firm diagnosis on the first appointment.
She will aim to give my expert opinion as a senior clinician as to the diagnosis and appropriate options for helping. Her assessment is based on asking a large number of structured questions in a fairly straightforward conversational way. She usually sees both child and parents together so if they feel comfortable, the child can contribute and She can unobtrusively observe them at play or interaction over an extended time. Parents are understandably wary of talking about their child’s problem in front of him/her but she finds that in general, children and young people can offer valuable insight and find the process helpful and positive. It may be helpful to explain to your child that she is a doctor who will try to find out why they are having difficulties and how we can together help make things go better. There will be no tests or needles involved!
With appropriate intervention, many behaviours associated with ASD can be positively changed. Research does indicate that with early and intensive intervention, many children make substantial gains and enter preschool programs with varying levels of support. Research has shown that a structured, specialised education program that emphasises communication and social interaction skills designed for the individual child will produce positive results. Family members must also consider their role in the program when evaluating effectiveness. Questions such as ‘How much time and resources will be necessary from the family in order to implement a specific approach?’ should be considered. The approaches found to be the most effective include a coordinated program involving the child and the family. Programs must be reflective of family concerns, priorities, and values, and consistently implemented by all providers, including family members.
There are some interventions available for children with ASD (such as attention autism mainly focus on Attention and listening skills by Gina Davis, positive behaviour approaches, social stories, ABA, visual support, therapeutic listening and sensory diet for sensory processing disorders.
Children with ASD also have other co existing conditions such as ADHD, anxiety, sleep problems that are managed with pharmacological intervention (medication) along with behavioural approaches.