I am a parent of three children, the middle of whom was diagnosed with high-functioning autism a year ago.
My son’s diagnosis, in previous diagnostic language, would have been known as Asperger’s. I still often use this term when explaining his differences, simply because most people’s notion of what autism is does not properly describe my son.
He is, in the language used by Angela Shanahan recently in The Weekend Australian(“Fuzzy boundaries could make NDIS a colossal overspend”, May 7-8), on the “milder” end of the spectrum.
According to Shanahan, “the explosion in autism spectrum disorder means the fledgling National Disability Insurance Scheme bureaucracy is faced with huge numbers of children with various psychosocial disorders, and vocal parents who are doctor-shopping for an autism diagnosis demanding early intervention and increased financial support for an often ill-defined behavioural problem under the cloak of disability”.
Shanahan goes on to say that “a small but growing number of health professionals and teachers are asking whether many children on the mild end of the spectrum are suffering developmental delay combined with inept parenting, in an age when most parents have hardly seen a baby before having one themselves”.
If people want to debate who should be eligible under the NDIS, they are free to do so.
But it beggars belief that years after the notion that autism was caused by uncaring, “refrigerator mothers” was debunked, parents would again be blamed for being “inept” because they are seeking help for the challenges their children face.
My son is not suffering from “emotional problems and psychologically stressed parents”, as Shanahan believes he could be, but he does have neurological differences.
His speech development is the same as any child, but he can become impassioned about a particular topic, ask questions repetitively, and become agitated if things are out of the norm. Sensory overload can make his life difficult and reading social situations is not something that comes naturally.
He is one of the happiest and most affectionate children I know, but at times he can withdraw into his own world, often deep in thought and his own imagination.
All of the above qualities are what make him unique and we love him dearly for it.
However, we know his differences could make it harder for him to make friends, maintain close relationships and even get a job.
Particularly by his teenage years, his differences could make him the target of bullying and mire his world in anxiety and depression. This is what we wish to avoid.
Central to Shanahan’s argument about the NDIS is the notion that some families deserve more help than others when it comes to their autistic children.
Of course they do. I have sat in the waiting room of my son’s speech pathologist — whom he visits not to learn how to talk but to learn vital social skills — and watched as other mothers have arrived whose autistic children struggle to verbally communicate.
I have witnessed their patience and love for their children and absolutely acknowledge that the road they have ahead of them is far more challenging than ours.
Yet I have seen the difference visits to my son’s specialists have made as we help him navigate a world that is different to his.
And I know that without government funding, even on respectable middle incomes, our family would struggle to pay for this assistance that will give my son a far greater chance of a successful and happy life.
Until now we have been covered by the federal government’s Helping Children with Autism package, which provides up to $12,000 for approved therapy and resources until a child turns seven, provided they are diagnosed before their sixth birthday.
For a child such as my son, who has fewer needs and was diagnosed when he was five, that is a lot of money to spend in a short time frame.
We have no need for the full amount in the space of two years, but sadly there are other families whose autistic children have far greater needs than ours. They, too, have been granted the same amount and $12,000 has barely made a dint in the type of assistance their children require.
It is this blatant inequality that many hope the NDIS will solve, replacing one-size-fits-all payments with targeted, individual funding.
Disability always has been, and always will be, a sliding scale. I applaud the sentiment that parents of profoundly autistic children deserve our utmost support.
But don’t insult thousands of other parents who live with the challenges of autism every day — regardless of how mild — and say the fault lies with them.
I am indeed “looking more closely at my parenting practices”, Angela. I am getting professional help for my son to prepare him for the life ahead. That, I believe, makes me a responsible parent.
Cathy Pryor is a former journalist at The Australian.
see also: http://a4.org.au/node/1218