"When we focus on the problem we loose sight of the child" (G. Landreth): Does the label o

Over the years, 17 in all, that I have been privileged to be involved in the lives of children with an Autism Spectrum Disorder (ASD) diagnosis I have come to acknowledge how much we so called ‘typically developing’ human beings look upon those with ‘atypical’ development as somehow not fitting in to ‘our’ world and with lesser entitlement to their experience. The consequence of this is that we focus on what needs to be changed in order to give this ‘atypically’ developing person the opportunity to fit into ‘our’ society. The willingness to make accommodation and truly empathise with their challenges in this world is often piecemeal and driven by a need to quieten the voices of parents who are struggling to access services for their children.

In the many roles that I have played in children's lives from supporter and teacher to therapist I have come to understand that the notion of trying to ‘fix’ what’s wrong, to meld the child into a more acceptable version of themselves creates within the child a sense of being broken or incomplete, a tension, that increases with each assessment, each therapy appointment, each unmet goal as outlined in an IEP.

Endless sessions of therapy and teaching with well-meaning therapists and teachers who are trying to encourage, cajole and in some instances force, skill building and ways of being in the world can be at best bearable and at worst down right fear inducing. It results in person after person really not knowing ‘me’ (the child) as ‘me’ but rather a being with a label.

Children diagnosed with ASD can become beings to be acted upon, individuals who must succumb to the wishes of the professionals who know best, and in the past, I would have included myself in that group. Parents can give over their power to professionals who mistakenly believe they know more about their child than they do. The pressure to impress upon the child's life the necessary developmental building blocks, as early as possible of course, is immense because time is of the essence.

I wonder what must this feel like?

What would I feel like if this was how others treated me? How can the child sustain the pressure, the constant input when we put so much focus on the ‘fixing’? I wonder is this why we have so many children with this diagnosis who develop further co-morbid psychiatric diagnoses unable to bear the intensity of feeling that they are nothing more than a piece of clay to be moulded into a more acceptable version of themselves.

Who and where is the child hidden behind the diagnosis, the one who doesn't know what is happening but who really gets the sense that he/she is unacceptable as they are, a square peg in a round hole, living in a world that pushes and drags and really doesn't take the time to get to know ‘me’ as ‘me’?

The gift of a child is a gift, full stop. Every child brings its own challenges to us as the adults in its life but they are our challenges not the challenges of the child. The child's challenge is to survive, thrive and live happily within a supportive, loving, wholehearted family and community where all parts of them are supported, loved and nurtured.

How do we refocus and prioritise what is important for the child with an ASD diagnosis?

How can we really meet the needs of each individual child?

Over the next few weeks I hope to outline what I consider to be vital new developments in neurobiology that will help to inform our decision making around how best to support and nurture these children as children in a whole-hearted way across all environments.