Recently, over coffee with a colleague, conversation turned to the diagnosis of an autism spectrum disorder for my son, at the age of 4. “What did you tell people?” my colleague asked. “Nothing,” I answered. The reality, though, when I later reflected on this conversation, is that some things are told, and some things are silenced.
What I mean by this is that in the process of diagnosing very young children, families often find themselves telling a range of people – everyone from family and friends to allied health professionals and doctors – about the overwhelming symptoms and negative behaviours their child exhibits. Under the Diagnostic and Statistical Manual of Mental Disorders IV, for an autism spectrum disorder to be diagnosed, the child must show deficits in communicating and interacting with others, as well as repetitive and restricted interests across contexts. As a result, you are often talking about the worst aspects of your child’s personality and conduct with a wide audience – but rarely do you discuss the strengths.
The road to diagnosis is not only traumatic for many, but is also lengthy for families. This is seen in a few different ways. For some families, the waiting list for funded mental health services can be more than a year long and can be an anxious time in the journey towards diagnosis. Compounding this situation is the range of experts to be consulted, as meeting the criteria of the condition involves a multi-disciplinary team approach. This results in families needing to tell a range of professionals about the negative behaviours and difficulties their child experiences over an extensive period of time.
In addition, a diagnosis on the autism spectrum and entering early childhood services may raise new challenges for families. An application for inclusion support funding may be sought to assist the child in the environment. This hugely complex application process largely involves the family, support agencies and educators focusing on and speaking of the child’s ‘worst possible day with the worst possible behaviours’ to successfully obtain funded support.
What’s quite often lost, then, in these prolonged and complex conversations is [the ability to see] the child holistically and use a strength-based approach to understand a very young person’s talents, desires and interests.
Certainly, under the Early Years Learning Framework, there has been a shift to focusing on the competencies and capabilities of children and holding high expectations of every child. Educators are also guided to work collaboratively with families and support agencies to seek the best outcomes for children. Under this model, a strength-based approach is advocated to educators.
Children and families are thrust into a strength-based model in early childhood services that have been confronted with a negative view of the child’s abilities for, potentially, a long time.
Recent figures from Amaze indicate that as many as 1 in 100 Australian children are now diagnosed with an autism spectrum disorder. Therefore, there is a need to find ways to meaningfully speak to the strengths of children and their families in the context of early childhood education.
This notion, however, raises more questions than answers. How can families speak to the strengths of their child when, for so long, they have needed to speak about their child’s deficits and difficulties? In what ways can educators continuously view and speak to the capabilities of children in a system that focuses on the deficits of children diagnosed with a disability? Are there new ways for professional support services to view and speak of children, beyond a deficit-based approach?
In my own journey with a child diagnosed with autism, what did I tell people? Eventually, after the nothingness – amidst the diagnosis and the appointments with educators – I spoke of the deficits and difficult behaviours, the anxieties and fears. What wasn’t voiced, and still is not for many young children and families, are the strengths, talents, interests and desires that are silenced in this process.
Kim Browne is an academic in the School of Education at RMIT.Do you have an idea for a story?
Email [email protected]