Speech at the launch of the Raising Children Network autism website
*Check against delivery*
Good morning to all of you, I am delighted to see such a big turn out, particularly the interest shown by members of Parliament.
This website is the culmination of eight months of development and research. It has been developed by the Raising Children Network – a consortium of three organisations with a proven track record in child development, research, and information delivery.
I would like to acknowledge the representatives of all three members of the consortium here today.
- Warren Carr, executive director of the Parenting Research Centre.
- Megan Keyes, Project and Content Manager of the Centre for Community Child Health at the Royal Children’s Hospital Melbourne,
- and Divonne Holmes à Court, CEO of the Smart Population Foundation.
Having a child diagnosed with autism, in my experiences of talking with parents, can be a very big shock. Some parents will move into denial, I’d say more the dads than the mums.
But once this shock is over, trying to access services for the child becomes the next major issue.
Some of you who have heard me speak before, would know that I have discussed a situation where, with regard to disability and autism, there is a series of collisions where the system that should be supporting parents, does not support them. The system of support is very disjointed which is why I use the word collisions.
What I mean is, you get that diagnosis, that’s the first collision, that’s when you try to get access to Early Intervention Services. The Rudd Government has introduced rebates for these services, but I know it is one thing to get a rebate for a service and another to find a service where you can spend the money. So I am fully awake to a lot of the hurdles that are out there.
Then, depending on the child’s needs there is another collision with the education system. Finding a school, whether it is mainstream or special, which caters for the needs of the child can be difficult, and in some cases is a straightforward lottery. This is also a very isolating experience.
When parents go to the school system to seek resources for their child it is a collision. Especially in mainstream schools where parents are made to feel, not because anyone is harsh or uncaring, that they are troublemakers for trying to seek adequate support for their children, again this is a very isolating experience.
And this series of collisions will continue on when the child reaches the secondary system. This is much harder than the primary school system, you have special schools that will take a child for four years, but getting a P-12 combination is really difficult.
What happens after school is another collision. As autistic kids get older, some of their challenging behaviour requires more support than it did when they were three or four.
I know things are getting better, because I have spoken to adults who were the brothers or sisters of children with autism in the 50s and 60s about their experiences, but I’m aware there are a lot of things that can be improved.
The reason I like this site, and the point I really want to make at this launch is this:
Parents today whose children are diagnosed with autism are not, as far as I can tell, willing to accept that nothing can be done.
As we know, the estimates of numbers of people with autism vary, and there are people here today who are more acquainted than I am with the cutting edge research.
But it is generally recognised that 1 in 160 children will have a diagnosis somewhere along the autism disorder spectrum, and what I have seen is that parents are asserting their right for their children to have treatment, which I think is very legitimate.
So I find these aspects of autism are important, not just because of the issues around delivering services to children with autism, but because I think Autism Spectrum disorders have something to contribute to the disability debate and people with disability generally about how to construct an identity.
The problem with disability in Australia is that it is invisible, and behind closed doors families have to battle for resources and for early intervention services.
So I am saying that this website is a good step forward. I am not standing here saying that the Government has all the answers, because we quite clearly haven’t found all the answers, and you would have to be foolish to assert otherwise.
What I do know is that this Government is interested. We re-jigged the autism package when we came to government and we are interested in seeing more providers available.
There are now over 300 providers in Australia that parents can see, and we’ve got provision for rebates for 0-6 year-olds. If you live in regional Australia you can get money for travel, or parents can pool funds to get specialists out to where they live, and that’s all very good.
It’s always a difficult thing when you talk about a Government’s initiatives, like the one here today, to get the balance right, because there is always something more that needs to be done.
What breaks my heart, is that I realised when I came into this job and had the privilege of being the disability spokesperson for this Government, that we don’t have enough specialists or generalists who understand about autism.
We’re putting in place trained specialists for autism, but If I had a dollar for every parent who tells me they’ve taken their child with autism to a GP, and the GP gets the needle out (pause)…well it’s a different ballgame then.
Parents are continually dealing with well-meaning professionals who don’t understand about autism, so I think that this website is a powerful and useful tool and that other parts of the impairment debate should look at it, and try to extend it, extend the ways in which we provide information.
This website gets to one of the core challenges, which is how do parents who are not connected, find out what to do or where to go? How do families who are isolated in the community know what to do?
It gives me goosebumps when I think of the number of parents I have met who are made to think they are bad parents because of their child’s behaviour. The amount of guilt that society transfers onto the shoulders of parents of a child with disability is wrong and ridiculous.
If you saw similar discrimination on the basis of sex or skin colour you would be up in arms. But with an impairment or condition like autism the amount of guilt put back on parents is wrong, insulting, punishing and discriminatory.
That is why this site is important, not just because of the services it will provide or the problems it will solve but because it is another step to taking some of that burden of the shoulders of parents who already feel isolated.
Obviously in the future I hope we in Federal politics will find more things we can do for children with autism after the age of six. Because autism doesn’t go away.
But I do think the focus on early intervention is sensible. I hope we can have more engagement with the school systems and the states to ensure that we can have a nice continuous thread of life, that goes from P-12.
There are initiatives that the Rudd Government has taken, I won’t read you out the press release but they’ll be on the web. But I do think that this is only the start of what we can do.
The other thing I get is from parents of children with developmental delays which are not autism, who say: “What about us?”
And, you know what, that’s a legitimate question. Global Developmental Delay, other wise diagnosed, what about them? For some parents in Australia there is nothing at all.
I’m not saying we should have a misery competition between factions of impairment over who gets what. What we need is to raise the general profile of people with disability
To those of you here, some of whom I have known for 12-14 months as you keep putting up ideas, all I can say to you is that you are not alone in terms of what you are trying to get done and there is an immense amount of political goodwill which I actually think is bipartisan.
I know from this Government that there is a commitment to try and ensure that there is enough early intervention and support that a person with an impairment does not have that impairment define there whole life, and that we have a system in this country which ultimately recognises the whole person and not the impairment.
So I’d like to conclude my remarks and invite Warren up here to speak about the website itself.
Thankyou all for being here.