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Legislative Council - Fifty-Fourth Parliament, First Session (54-1)
2019-04-03 Daily Xml
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Motions

World Autism Awareness Day

The Hon. J.E. HANSON (16:00): I move:

That this council—

1. Supports South Australians living with autism to fully participate in society using their fundamental rights and freedoms;

2. Recognises World Autism Awareness Day on 2 April 2019;

3. Recommits to ensuring South Australians living with autism are given every opportunity to participate at school, in the workplace and out in their communities; and

4. Thanks all service staff and volunteers who help provide the valuable support needed by South Australians living with autism.

I am sure almost everyone in this place is more than willing to join me in celebrating the fact that yesterday was World Autism Awareness Day. It is celebrated on 2 April every year and has been for quite some time. Autism Spectrum Disorder (ASD) refers to a group of developmental disorders, including autism and Asperger's syndrome, Rett syndrome, pervasive development disorder, or otherwise not specifically specified disorders which are also known atypically as autism. The word 'spectrum' is used because the range and severity of the difficulties people have with an ASD experience can vary widely. A diagnosis can range from mild to severe. While approximately 75 per cent of people with autism also have an intellectual disability, ASD also occurs in people with an average and above average IQ.

Given current trends and a plethora of data, we can assume an ongoing 12 to 15 per cent increase in people diagnosed on an annual basis. This is consistent with both national and international trends and might reflect an increasing prevalence of rates or could possibly reflect an increase in detection rates or both.

I think it almost goes without saying that in this place many people would have no problem with supporting any motion which purports the kind of words and which speaks to the inclusion and support which this motion outlines. However, I do want to go into a little more depth in my speaking to this motion. It is one that is very close to my heart as someone with a close family member who has a diagnosis of autism. For the person I know, the diagnosis is not severe but it is life-changing.

It is important to recognise that every person with ASD is unique, with different skills behaviour and interests. There is considerable complexity and diversity within the autism spectrum community. As the saying goes, 'If you've met one person with autism, you've met one person with autism.' However, there are common characteristics that—thank you very much to the Hon. Clare Scriven, that was a joke.

There are common characteristics that people with ASD share to varying degrees. These include difficulties in communication, social interaction and repetitive or restricted interests and activities. Indeed, such is the growing prevalence of ASD that my experience of knowing a loved one with ASD is not really all that unusual these days. I am very certain that many of us will know someone, maybe even a family member or just a friend, who has a diagnosis of autism. In fact, in 2015, the Australian Bureau of Statistics identified that there were 164,000 Australians with an autism diagnosis and this included around 80,000 children aged between five and 14 years of age.

That same data indicates that be it at work, at home, in a group of friends, or even at a local sport club or other pastime, 85 per cent of Australians have personal contact with a person with autism. These kinds of statistics make it pretty clear that, for many Australians, autism is actually part of their everyday lives. Despite this, and despite my relative comfort around those with autism, figures show that around two out of every three Australians have said that they have no idea how best to relate to a person with autism—that is two out of every three. Further than this, only 4 per cent of people with autism and their families agree that people in the community know how to support them—4 per cent.

The fact is that having a friend or family member who has autism will teach you a lot. Different rules do apply to everyday tasks that you once took for granted. There are places you feel you can go and places that challenge you in different ways.

Many families of people with autism, and indeed those who have autism, do not feel supported to fully participate in all the things that many of us want to do to be fully appreciated and to participate in society. There is a disconnect. I rush to add that it is not deliberate on anyone's part, but there is a disconnect between everyone wanting to participate and being given the ability to do so. It is occurring in the main because of a lack of understanding of how best to approach everyone being involved and it is in this regard that this motion is brought to this place by me.

We need to always be looking for ways we can facilitate everyone participating and also recognising the ways we are already doing so. So what are the main challenges that are being faced by those with autism and their loved ones and friends? Well, 29 per cent of all NDIS participants have a primary diagnosis of autism. This represents the single largest cohort of people in the scheme. Waiting times for the diagnosis in the public system can be, and usually are, between 12 months and two years. For those with a diagnosis of autism, up to 70 per cent of them also experience co-occurring mental health conditions.

Many of those with autism, on an international level, have a life expectancy of between 20 and 36 years shorter than the general population. The unemployment rate for autistic people is 31.6 per cent—a rate three times that which generally affects people with a disability and six times greater than those without one at all. Only 65 per cent of those with autism achieve results which propel them beyond year 10 in school; 6.5 per cent of those with autism currently hold a bachelor's degree.

It goes without saying that these statistics, more than just being numbers on a page, have a very real effect on people with autism and their families. They outline the challenge facing many who have caring responsibilities for loved ones, or just as friends, let alone the challenges for the person themselves. It is anticipated that many people with ASD will be supported through the NDIS. However, it is important to note that some people with ASD will not meet the eligibility criteria for the NDIS but will still require services and support to enable them to live fulfilling lives.

Autistic people and their families typically experience significant social isolation, with 51.6 per cent agreeing that they feel socially isolated and almost 40 per cent believing they cannot leave their home due to concerns about discriminatory behaviour or negative reactions in the community. That is 40 per cent believing they cannot leave their home.

All of this can, and probably does, paint a bit of a grim picture. Unlike myself and my loved ones, not every family or group of friends with a person they know who has a diagnosis of autism will have access to the same resources that I do. Many families struggle financially, socially and mentally with the everyday struggles of being denied opportunities. However, actions are being taken to help those with an autism diagnosis. Things have radically improved from where they were merely a decade ago.

We have fantastic groups supporting those with autism who operate day in, day out and who advocate on behalf of change in the community in attitudes and support. Autism SA, for example, provides a range of services, including diagnostic, early intervention, advisory, school inclusion programs, training and development, as well as day options and respite. Such services allow participation in the community, sporting and cultural activities, and it is these events that are vital for people with ASD to prevent social isolation and discrimination.

Raising community awareness and understanding of autism, like that done by Autism SA and other organisations, is essential to encourage inclusiveness and improved attitudes towards people with ASD. There are significant social costs in failing to be inclusive of people with autism and consequent loss of health and wellbeing for people who suffer from it. Groups such as Autism SA deserve support and respect for what they do, and I take the opportunity here and now to recognise and thank them for all they do.

Looking more broadly across Europe, a number of nations have developed a national autism plan. Indeed, a detailed analysis of those nations has discovered that these plans are having a very real long-term effect, that being that those with autism are more accepted. They are given more opportunity and, importantly, they feel more positive about their lives.

Closer to home, there has recently been a Victorian government inquiry into services for people with autism spectrum disorder. This, among other things, made a recommendation that there be a national autism strategy for Australia. As a brief aside, I can highly recommend to anyone who is after more detail or data on autism spectrum disorder, its costs and its effects and the growing need for further understanding of it, to have a read of that Victorian report: it is very educational.

Indeed, there has been a growing demand for a national strategy in Australia for some time, and it was pleasing to see a motion passed in the Senate only yesterday, on World Autism Awareness Day, to the effect of supporting just such a thing. Importantly, in this motion there is an encouragement to partner with autistic people and their families and carers in developing such an agreement. While I am aware that often the more input you receive the harder it can be to tailor to individual needs, there is much scope here to listen to the community to make sure that whatever is put in place meets the needs of the community now and the ability to adapt and change as those needs change.

In summing-up, I do not expect anyone here in this place to in any way oppose much of anything that I have just said. We all have the best of intentions of supporting those with ASD and I am certain that many of us would go the extra yard to do so when presented with that opportunity. We all acknowledge the service staff, volunteers and organisations that support those with ASD. We thank them, we applaud them and we recognise just how much we rely on them to make this world a more inclusive and better place for those with ASD.

But it is important that days such as World Autism Awareness Day are recognised and celebrated, and we do so gladly and with great meaning with motions such as this. However, it would be remiss of me, in putting forward the fairly agreeable motion that we have before us today, not to also use this as an opportunity, and I do use it as an opportunity. It is an opportunity to implore that we start doing more than just supporting motions like this. We should start paying more attention to the significant numbers of those around us who have ASD. We should start looking at our own actions and how we can make them more inclusive and less discriminatory towards those who have ASD.

There is a lack of assessment and diagnostic services, a shortage of qualified diagnostic clinicians and a real lack of early intervention and behavioural support services for those who have ASD. This is something that we can remedy slowly over time. More than that, we can look into how to institutionalise such support into the decision-making of our existing community, private and public organisations. We can look to ending the shortage of services, their high costs and their poor integration of services, especially in rural and regional areas.

For both children and adults with ASD, access to education, health and mental health services and programs is limited, with long waiting times for support. There is also a lack of knowledge among education, health, mental health and disability service providers about autism. It is important that these professionals are provided with education and training so as to address that knowledge gap. With the diagnosis rates of autism spectrum disorders growing steadily, we need to ensure the broader community is sensitive to the needs of people with ASD. Better understanding the complexity of ASD can only be achieved through personal experience and educational campaigns. That is why World Autism Awareness Day is so important.

Debate adjourned on motion of Hon. C.M. Scriven.

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