Wednesday, 24 November 2021
Statements by Senators
Autism: What Next
Today I want to talk about Autism: What Next? It's a website that's recently been launched to assist families who are going through an autism diagnosis or have received an autism diagnosis and also to assist adults who have received an autism diagnosis. It might seem strange that, for something that is as prevalent as autism, a resource like this has not existed in the past. In the past, families and adults were very much left to their own devices after a diagnosis, all too often falling into the trap of consulting 'Dr Google'. We all are aware that, on the web, there is a lot of misinformation and pseudoscience that can confuse parents and place them in danger of perhaps looking at therapy options that are not evidence based or that are not based in science and that will end up having either a detrimental effect or, at best, no effect whatsoever.
This website, Autism: What Next?, has been made possible by an ILC grant to Autism Awareness Australia funded by DSS. Autism Awareness Australia is a parent-run organisation that has well over 15 years experience around autism. That is reflected in the quality of this website and the advice that is available for parents to help them navigate what can be an incredibly tricky and devastating time for families. The website itself, though, it is important to remember, is put together by individuals with autism and families of children with autism. This is real lived experience, and it's backed up by clinicians and therapists who provide evidence based therapy for these families and also for adults who are diagnosed later in life.
The guide to best-practice therapies says that it's really important that we see children begin a pathway as soon as possible with evidence based therapies. It's those evidence based therapies that are going to give the best outcomes for that child and that family in the long run. The guide provides information for families that emphasises the importance of it never being too early to start, and emphasises that there should be therapies that are effective and intensive and that the sooner you can get on to those the better. Including the information in there is also helping parents understand that therapy is not just to be conducted in a clinical setting. It's not enough to go to a speech therapist, sit across the desk, have a session and move on. These therapies need to be conducted across a range of environments, and this allows the child to generalise those skills that they're learning so they can use them at home, at preschool and at school, so that they can start to generalise and move more into the community.
We know that the best therapy types for children will ensure that that child's communication skills are developed, but we also know that they're play based. The child starts to understand the importance of turn-taking and playing games. For neurotypical children, these skills come very, very easily. Children move from parallel playing next to each other to engaging with each other. A lot of children with autism need to be taught this skill. It doesn't come innately to them to learn how to take turns. So it is important that we start looking at these things through a play based environment. It's probably something that could be taken as a lesson in this place sometimes: turn-taking is a very big part of conversations. You wait for the other person to stop speaking before you start your own contribution and start saying what you want to say.
One of the things that I think demonstrates how needed this resource is across Australia is that, within the first three weeks of it being launched, there were over 7,000 users of this site. I have no doubt that, as the awareness of this site gets out there, that figure will continue to grow and parents and families will start to utilise more and more of the resources on the site. Those resources—in addition to a lovely photo of me with my beautiful Freddo in one of the sections—include over 75 videos of people with autism or parents and carers of a child with autism to share real-life experience and to share what autism means and how parents and families can be best supported and access those resources. So it is such a great initiative. It's great to see that this website has been rolled out, that families will be able to get access to information when they need it and that the information is in a centralised place. It has been endorsed by clinicians and experts in the field.
Hopefully, as we move forward we'll see fewer and fewer families being seduced by the charlatans and snake-oil salesmen who, far too often, operate in this space. They take advantage of families at a time when they are most vulnerable.
This site is a free resource, and no part of it is trying to sell families anything. There is no direction to particular clinics. There is no direction to particular providers. So families are provided with information. They can use that information to make effective choices, find good centres around them and understand better how they can support their child and put them on a pathway.
Coming back to autistic adults, for adults who are diagnosed later in life—and we're seeing this happen more and more, as we better understand how autism presents itself, particularly in women, and what it looks like—it is important that they receive support. On this site there is a great level of information and support for those diagnosed and what their next steps are, because it's very difficult sometimes for people to understand where to turn, what to look for and where those supports are available.
So it's a fantastic free resource. It's exactly what the ILC grants were set up to do. They're about providing that tier 2 support and providing information to the community, and Autism: What Next? is absolutely one of the best resources to do this that I've ever seen. We are very lucky to have it here, centred in Australia, supporting Australian families through that journey. Obviously this is still based around diagnosis and the early stages. I sincerely hope that in future we get to a stage where we have resources that help parents through the different stages of autism.
Here I particularly shout out to Nicole Rogerson, the CEO of Autism Awareness Australia, who does an outstanding job for this community. Honestly, I can say that without Nicole and her clinic, the Lizard Centre, my family would not be in the position it is today, which is that Freddo went off to his high school induction day yesterday. Freddo had a great day. I'm not sure mum is coping as well as Freddo! But, from all reports, he had a great day. The cafeteria was the highlight. And, as only Freddo could pull, he met a classmate who has a PlayStation, which was a good thing, but also found out he had a pet blue-tongue lizard, which Fred decided was a hard 'no' on becoming possible friends!
So, if anyone can work out some of these things, hopefully when Autism Awareness start to do some more work for the next stages it'll help those of us who, as parents, are now looking to tackle all the joyous things that we do for all our children, including puberty—which, when you put it in an autism frame, certainly makes for a very interesting family life.
Also on the website is information provided by Andrew Whitehouse, a leading expert in autism recognised globally. He has recently released a study, which I think has significant impacts for the autism community, showing that gut health issues do not cause autism. We do know that kids with autism can be very picky eaters and that can create problems for them when it comes to their gut health and gut bacteria, but we also know that that does not cause autism and it's not a linkage for which we need to keep providing funding and supports. Again, it's a pseudoscientific claim that's been around—'If you fix the gut health, you fix the autism.' That's absolutely ridiculous. Hopefully, we can start to see the end of those claims being made. Some of the therapies around are, quite frankly, just dangerous, and it's good to see that this very strong research has been done to assist families and make sure that those pseudosciences aren't supported and that children aren't being subjected to these horrific kinds of therapies.
I'll also just take the opportunity, in the last minute, to say thank you to Ryan Norn, who started working with us when he was at the Lizard Centre and is still with us 10 years later. He has been Fred's shadow at school and is now working with him to teach daily living skills. If, at the beginning of our autism journey, I'd had a resource that could have mapped out a pathway for me, it would have been just such a relief, because you really don't know where to go, and, more importantly, you don't know what the future holds. Our kids can achieve so much. Fred cooked dinner last night, after peeling potatoes begrudgingly. These are skills that are important to learn, and it's important that they are taught in the right way. Without the intensive early intervention that we received, we would never be where we are at the moment.