story: Facing the realities of raising a child on the autistic spectrum

Many of the children who come through the Champion Centre have disabilities that are immediately apparent to others. But there are many others whose challenges, while less obvious, nonetheless impact all aspects of their lives and the lives of the parents who raise them.  This is the story of one young man, now in his twenties whose mother shared her story with us. We are not going to identify him or his parents because, as his mother said in her interview with us, “when someone has already been identified as having a disability…the disability becomes the identity, rather than this is […] and he has strengths and he has weaknesses” like the rest of us. 

At about 18 months of age, delays in this child’s development led to a referral to the Champion Centre. Staff observed his terrified and unpredictable responses to loud noises, other children, animals, lights; his dislike of certain kinds of touch; his inability to express himself when highly anxious; and his ‘enthusiasms’ as autism expert Barry Prizant would call them: things he liked to do repeatedly and that calmed him down.  In response, the Champion Centre team worked with his parents to provide support at the Centre and at his pre-school, where he was lucky to have an excellent teaching team. As his mother said, ‘There was a whole network of support.’

Going to primary school, however, presented new challenges, as the individual support of early childhood was replaced with the expectation that every child would fit into the same pigeonhole and just follow the rules.  Moreover, although he was not a trouble-maker, other children bullied and made fun of him. In the classroom he needed the support of a teacher aide, but because he did not qualify for one, his parents paid for an aide, and for a reading tutor.  Within weeks he had skipped ahead two years in his reading age! Additional parent-funded support helped his maths, spelling and grammar.

At intermediate, he was faced again with bullying in a situation that his mother recognises just is not set up to support a boy “who, to this day has difficulty understanding when to join the conversation and when to laugh at something someone has said”. He was also challenged by the complexity of the instructions in classes that meant he was almost always being growled at for not keeping up.

However, high school was a more positive experience as his artistic creativity was finally recognised.  A highly talented visual artist and a wonderful story writer, he also found others who loved the world of magic and fantasy as much as he did. As his mother says, “The magical world was probably easier to negotiate than the actual world”. And then there was the world of the theatre where he has excelled, earning a degree in drama and a teaching qualification.  He was out of the woods, it would seem.  But the challenges he faces are not things he can ‘grow out of’. Interpersonal interactions remain hard, as does organising and following through the complex set of tasks that constitutes daily living and teaching quickly proved more than he could manage and he is again looking for a new pathway.
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Throughout, his parents have been able to support their son through his challenges; and they remain forever grateful to the Champion Centre for the support they and their son received in the early years. But this doesn’t make the pain and grief of their journey as parents any less raw.  This young man’s fragilities and the risks to his mental and physical health will always be there and only a society that steps up to valuing differences, rather than seeing them as excuses for exclusion, can make a genuine and long-term difference.