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Speech by The Hon Bill Shorten MP

Parliamentarians Show Support for Autism Awareness Month

Location: Parliament House, Canberra

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Thank you Adrian – Adrian Ford from the Australian Advisory Board on Autism Spectrum Disorders, Bob Buckley from Autism Aspergers Advocacy Australia (A4).

John Doyle, Katharine Annear, Speaker of the House of Representatives, Harry Jenkins, honoured members and senators, Ladies and gentlemen.

It is fantastic to see so many people here today – I think the fact that we have 58 members of Parliament and Senators here today from across the political spectrum shows just how important autism issues are to everyone in Parliament.

I’m sure it’s heartening for people with autism and their families to see this amount of interest.

When you look at the history of autism services, it’s been largely parent driven, with the occasional assistance of philanthropic organisations.

For many years, autism has been an area where people have been ahead of the politics. Politics often scrambles to catch up with the people, and I am very happy that politics is certainly trying to catch up with autism spectrum disorders.

In the six or so months since the Prime Minister gave me the honour of representing people with disabilities, I have met thousands of people with disabilities, their families, carers and advocates.

My eyes have truly been opened.

I have discovered that if you don’t live with a disability or have a life with someone with disability, disability tends to be invisible.

I’ve also discovered that people who don’t grow up with autism have no idea of the good or the bad of it.

I am one of those people, so I asked a friend of mine to tell me about her experience as a mother of two children with autism.

Her letter to me is called “Life with Finn and Zac.”

She’s kindly agreed for me to read excerpts to you this morning and she’s most pleased at the level of interest in autism.

She writes:

Ten year old Finn is severely autistic, eight year old Zac, mildly so, and a stranger would think him a disobedient but joyfully mischievous child.

Life with Finn is chaotic and often distressing. I am an extremely resilient person, so tend to cope though I can see this changing as he gets older and physically stronger than me.

I do know that over time autism wears you down. Your dreams of being a perfect mother to your child fade and you just do what you can to get through each day.

Finn is now sleeping eight hours a night. Without medication he is too anxious to sleep. Now he takes a drug once used to knock children out before surgery and also for recovering alcoholics and drug addicts with insomnia. My chemist tells me she gets close to tears every time she prepares his sleeping tablets to think that a child his age is so disturbed that this is what it takes for him to rest.

When Finn is awake, all your time is spent attending to his needs, which are immediate.

If Finn’s needs are not met, and it is very much hit and miss, thin it is ON. There will be tantrums which include head banging, punching walls and yelling in a deep loud voice, over and over, MUM-EEE’.

Finn gets very anxious about going to school. When I tell him it is time to brush his teeth, he knows departure is imminent and he starts to get distressed. He yells ‘big hugs for mum’ which I do to comfort him (he needs deep tissue therapy to alleviate his anxiety). When I gently withdraw my embrace he realises that I still want him to go to school and pinches my arms so hard I cannot wear sleeveless shirts anymore as the bruises make me look like a victim of domestic violence. He calms himself by grabbing the fabulon and before I have a chance to confiscate it he squirts it three times into his mouth. I’m never sure whether he likes the taste sensation, I’ve tried it myself to understand the rush it gives him, or whether he does it because he knows it upsets me.

Once on the [school] bus, he is OK. He likes the routine of the same seat, the same children, the same drivers and support people. He happily looks out the window. Travelling vehicles are something of a comfort zone for Finn. That and toilets for whatever reason.

I go upstairs and look after Zac, who has learnt unintentionally – but through experience – that his needs are subordinate to Finn’s.

I get to work around 9.15. I have an excellent and very understanding employer. I am not sure how other people with less accommodating bosses cope. Many, I suspect, are forced out of the workforce.

I understand it is a spectrum, but we know enough to know there is mild, moderate and profound autism at least. Why couldn’t [all the] services I have accessed separately get together and say to me upon Finn’s diagnosis “these are all the things we need to consider; interventions that need to be in place; and treatments we should start right now, now that we have a diagnosis. So I don’t have to spend my evenings trawling the net looking for the best possible courts of action to alleviate some of Finn’s problems.

An example was his toe walking. Finn walks on his toes, like a ballerina. He has done this practically since he could walk. He has also visited his paediatrician every two months since then. From about the time he was seven, and getting a little heavier, he would often break out in uncontrollable crying, mostly in the evenings. He would be inconsolable for hours, pleading with me to help, but not able to tell me what was wrong.

I sought three opinions on this and now, two years later in July, Finn will have surgery to snap the tendons in his legs and feet and then be in plaster for six weeks. Not sure how we will cope with that.

Still, I can enjoy some time with Finn. He likes to go to IGA and straighten all the shelves. He can sit still and have a hot chocolate. He will go to the beach and just enjoy the freedom to run and yell without the pressure to always be more quiet than what is ever possible for him.

My friend knows that she and her husband have to earn enough money to last three lifetimes – Finn’s, Zac’s and their own.

She continues and concludes:

Many people think this behaviour is because I am not a persistent or consistent parent. For a time it was hard for people (including myself) to accept the children were autistic. Some would tell me I was just a bad parent and all it would take was for the boys to be smacked occasionally so they knew the boundaries. I wish it were that simple, but unlike physical disabilities, you can’t SEE how impaired children with autism are..

Friends, I read that letter because people with autism and their families do get on with life, they deal with autism and can achieve remarkable things.
But they clearly need support, and this Government is committed to delivering it.

In the coming weeks, we’ll be announcing details of our $190 million Helping Children With Autism package.

And it will be progressively implemented from 1 July 2008 by three Departments so it really is a whole of government approach.

It will enable families and carers to better support their children with an ASD post-diagnosis and undertake early intervention that will benefit their child.
And I really hope it will assist families and carers with the pressures they face in raising their children.

The package provides early intervention and support; additional funding to give children greater access to a range of early intervention services and playgroups across Australia specifically for children with ASDs.

There are measures providing Medicare rebates for children up to 12 diagnosed with ASDs, and education and professional development for parents and teachers to help them better respond to autism.

The Government initiatives are designed to complement and build on the State and Territory investment in supporting children with ASDs.

We’re also delivering on our election promise to build six autism-specific child care centres as part of our commitment to establish up to 260 new child care centres nationally.

These are all very good things, and will provide much needed support.

But I think, in conclusion, that I shouldn’t stand up here and say that’s the end of the matter.

You know they say that when you build a new road all you do is just move the traffic jam.

But we need to remember that, like all of us, they have a whole life ahead of them to be lived, and children and adults with autism deserve the same quality and certainty as ever other Australian.

Their need for support doesn’t end when they attend primary school, or put away their school uniforms. Their desire to be full and equal members of our society doesn’t dissipate when they leave the school gate for the last time.

But at the moment, many people with autism and their families are living lives of stress and desperation.

Remote communities, respite shortages and a shortage of skilled workforce are just some of the issues that need to be tackled.

Further, many of you will know that researchers are still having difficulty telling us exactly how many people have autism.

We do know that diagnosis in the last fifteen or so years has been increasing rapidly.

The Government is looking at ways to work in partnership with the States and Territories to develop an approach to a national voluntary ASD register as part of a strengthened national research agenda.

We will of course be consulting with stakeholders and families on this, but I believe it would be very useful to guide our policies and priorities.

Again, on behalf of my friend Julie, who wrote me the letter, and all parents of children with autism, thank you very much for helping increase awareness of autism this morning.