Stuart Henry (Hasluck, Liberal Party) Share this | Link to this | Hansard source

Over the past few months, since April, I have become acutely aware of the hardships that quite a number of amazing parents in my electorate of Hasluck endure. They are remarkable people and their energy seems boundless, but I have seen the evidence that this is not always so. The one common factor they have is that they are each raising a child or children with autism.

Autism is a condition which affects a large number of children in Australia. Sadly, there is no known cure, and tragically there are more children being diagnosed each year. These concerns were first brought to my attention by a group of caring, loving parents driven to desperation, who staged a sit-in in my electorate office. I was pleased that they did and drew my attention to their plight and that of their children.

This plight was further reinforced by an article recently in the West Australian newspaper headed: ‘Kids born with disability miss extra payment’. It was reported that a Katherine Shuard-Banks, who has a three-year-old severely autistic child, gave up her full-time career to become a full-time carer of her son but was not eligible for the carer’s payment of some $525.10 as Centrelink did not consider her son’s condition serious enough. Ms Shuard-Banks was quoted as saying:

I have to be my child’s speech therapist and his behaviour therapist. Parents of autistic children don’t have a collective voice because we are just too busy.

This message certainly came across loud and clear from those who used their precious time to visit my office to raise their concerns.

The diagnosis of autism is not immediate. It takes some time to show. Parents start to notice that, often by the age of two, their apparently healthy child does not respond in the same ways that other children do. As these children grow they become more withdrawn, depending on their ‘functioning level’—a description often used by parents with an autistic child. The parents’ life is ruled by the impact of influences that the child feels. Many autistic children do not have the power of speech, so when a child with autism is upset and cries or screams, as all children do, it is impossible for the parent to diagnose whether their child has an earache, whether they have been stung by a bee or whether they are feeling stressed by something else.

I have four daughters, so I know that when a child is crying the thing to do is to find out the cause of the problem and to try to remedy it. Parents of children with autism have no way to determine what can set off their child crying and screaming. When it happens, and it is often, the bouts of crying or poor behaviour can last for hours on end, with no simple solutions other than the strong love of the parents and staying calm and in control so as not to exacerbate the situation and further add to the stress of the child.

Parents with autistic children need more support. They are left to their own devices to try and navigate their child and the rest of their family through a minefield of uncertainty. It takes a long time to accept that your child, who may in all other respects appear normal, has been shut out of your life, a normal family life. To not be able to show where it hurts, what is wrong or what you are frightened of must be a horrible and terrifying experience. There is no magic solution; it is just tough all the way. As the child grows, they are often harder to help. Schools are not easy places for children who suffer autism. One of the common issues for children with autism is that they do not like change and they cannot cope with things being slightly different from the way they were yesterday.

Life with a child who suffers from autism is more than challenging. All too often it is a lifelong nightmare for parents. I am truly amazed at the strength, energy and love that so many parents of these children show. Parents with autistic children have been advised that they cannot apply for the recently announced $10,000 carer adjustment payment. As a government we need to do more to assist these parents to support their children and families and to provide some respite. Their time is not their own—not for one minute—unless they get lucky and get assistance and respite. These parents keep it together. They do not have the time to lobby for a fairer go or more money. They need a hand now to help with their stress and exhaustion. We need to provide them with support.