Craig Kelly (Hughes, Liberal Party) Share this | Hansard source

Firstly, I would like to congratulate the member for Kingston for this private member's motion and her interest in this subject. Autism affects one in 100 Australians, and my son Trent is one of those one in 100. Everything this motion notes—the significant impacts of the autism spectrum disorders include difficulties with normal social interaction, delayed speech and unusual forms of communication, intense preoccupation with a single particular interest, inability to comprehend the consequences of behaviour, lack of awareness about the emotions of others and associated learning disabilities—are things that I and my wife, Vicki, have and continue to experience every day with our son Trent.

Trent was also born with Down syndrome, and the day that he was diagnosed was the worst day of my life. To be told that the hopes and dreams for your little boy are dashed leaves you with a great sense of guilt. But I was wrong: my dreams were not dashed, they were just modified. Trent is now 16 years old, and I have learnt some very valuable lessons in those 16 years. They have certainly been challenging years and they have certainly been a struggle for my wife and me. But, most of all I have learnt that every life is important; it is precious and it is valuable.

Like many parents who have their children diagnosed with autism it took quite a while for Trent, our son, to be correctly diagnosed. When he was about 18 months old we had concerns that he had a problem with his hearing, because he would not respond to noises as you would expect a normal child to do. For month after month we took him off to a hearing clinic, where they would put him in a darkened room and make noise with a puppet in one corner of the room, expecting Trent to turn, to recognise that his hearing was okay. But of course Trent would pay no attention so the hearing specialists thought he had hearing difficulties. We then went through months of trying to fit him with a hearing aid. The very minute we put it in his ear he would pull it out. This was a game we would play for hours and hours on end, and he would always win.

One day we were over at my mother-in-law's place and his favourite TV show, Blue's Clues, came on. The very minute he heard it his little face turned to it. And I thought, 'You little bugger, you have been conning us all the time.' His hearing was okay, but he was autistic, which provided many of its own unique challenges.

Trent does not have any language, with the autism and the Down syndrome, but he certainly can let us know what he wants. He is a happy body. He laughs as much as any kid. He is satisfied and comfortable in the world he lives in that we created for him. He certainly gets frustrated from time to time but he can often get past that frustration after about 30 minutes of hard work. He does not have to worry about the next day, next week or next year. His world is uncluttered by the worries of responsibility, social acceptance and the subconscious fears that plague the rest of us.

Now that he has reached the age of 16, it is time for him to start shaving. Every week I go through a procedure where we basically play jiu jitsu. I try to get the razor to his face and he tries to push it away. So we have shaving down to about 40 minutes from originally an hour and a half. One thing I have learnt is that every child with autism is different.

While Australian statistics show that we have one in 100 children with autism, in the USA those statistics are less, at one in 88. That is perhaps because they have mandatory assessment for all children. Perhaps we need to look at having mandatory assessment for all children before the age of four, before they reach school, so that they cannot slip through the net. We make sure that if these kids do need early intervention they actually get it. That gives them the best chance of having a solid foundation for their future.

This motion also notes that the House recognises that raising a child with autism can present considerable challenges for families, including financial and emotional pressures as well as strains on the family unit and marital stress. Those I can attest to.

The Autism Society of America estimates that the lifetime cost of caring for a child with autism is between $3.5 million and $5 million. But all the money in the world does not make dealing with autism easy. Many parents I know who have kids with autism are on medication for depression. The divorce rates are high and studies have shown that single mums of kids with autism have the same stress levels as soldiers in combat.

One thing that I have been truly grateful for is to meet many other parents in a similar situation. One group in our local area is called the Autism Advisory and Support Service. This is a not-for-profit charity run by parents of children with autism—they help. It is run by Grace Fava, Fiona Zammit, Bassema Ghaznavi, Korrine Miller and Tracey Diec. I am on the committee and I must apologise that I am unable to get to as many of their meetings as I would like to, because of parliamentary commitments. They run a range of services. They support, advocate, help to educate and guide families who have a member of their family with autism. They run a 24-hour hotline, all serviced by volunteers, so that parents from around the country can pick up that hotline and discuss, with a parent who understands the issues, the problems they have. I asked Grace Fava, who is a true champion for the cause of kids with autism, to help me make a few notes on a few other issues with the bill. One thing that she pointed out is that we should ensure that all therapists have a capped fee. The introduction of the HCWA package through FaHCSIA has seen a huge rise in fees for many of the therapists, which has seen the extra funding eaten away within months, with little or no progress made by the child. Although this funding was introduced to expose children to a wide range of therapies and interventions, there is simply no 'one size fits all' with autism.

This motion also acknowledges support provided through the government's $220 million Helping Children with Autism package, which is the first national initiative to help families and children with autism. This was much needed and was a big step forward. However, as Grace notes, much of this money has been wasted on needless administration. If the funding were administered through Medicare, there would be less administration required and there could be no conflict of interest for autism advisers, who currently self-refer families with no other options. It would be more appealing to therapists, particularly those in regional and remote areas, to sign up. Currently there is a long waiting list in regional Australia and there is only one therapist serving many areas.

I also asked Grace about the cut-off at four years of age, an issue that she raised with me. She is correct that autism does not magically disappear once the funding is finished. To ensure that every child has the same opportunity to fulfil their potential as their neurotypical peers, and to keep in line with the UN Convention on the Rights of Persons with Disabilities and the Disability Discrimination Act, we must come together. I list these points: (1) agree that autism is an epidemic; (2) provide and maintain funding for therapies for as long as the child requires; (3) make provision for those children who are more severely affected, with suitable therapies, respite and accommodation that is age appropriate; (4) understand that individuals with autism are individuals first and foremost and they deserve respect, understanding and a society that will accommodate their needs; (5) provide education in settings that embrace the needs of those with autism and their comorbidities; and (6) provide effective training to teachers, therapists and medical professionals to understand and accommodate those needs. Any implementation of an NDIS must ensure that the needs of all individuals with autism and Asperger's receive the support and funding they deserve. We must ensure that the needs of the vulnerable are placed above the profits and greed of several corporations.

In the short time left, I would also like to take this opportunity to give special thanks to the children, carers and teachers at Bates Drive Public School, which looks after many children with autism. The teachers at that school deserve gold medals every single day. They truly do a wonderful job, as many of the other teachers do in our special needs schools throughout the nation. Again, I thank the member for Kingston for this motion. We have come a long way. We still have a long way to go together. Let us hope that we can work with both sides of this parliament coming together and making sure we can give our kids with autistic disorders exactly what they deserve and need.

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