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Legislative Council - Fifty-Fifth Parliament, First Session (55-1)
2023-05-04 Daily Xml
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World Autism Awareness Day

Adjourned debate on motion of Hon. E.S. Bourke:

That this council—

1. Recognises that April is Autism Month and 2 April is World Autism Awareness Day.

2. Acknowledges that Autism Awareness Day recognises and celebrates the rights of autistic people to lead full and meaningful lives as an integral part of our society.

3. Congratulates the Malinauskas government on its commitment to improving the lives of our autistic and autism communities through—

(a) appointing the nation’s first Assistant Minister for Autism;

(b) investing $28.8 million to fund access to an autism inclusive teacher in every public primary school;

(c) seeking to increase the number of autism-qualified staff in preschools;

(d) working with service providers to offer early intervention services in children’s centres;

(e) developing a state autism strategy that will operate with the state disability plan and requiring all government agencies to sign up to an autism charter; and

(f) investing $50 million to fund 100 speech pathologists, occupational therapists, psychologists and counsellors for access in public schools.

4. Thanks everyone who participated in the public consultation on the development of the state's first autism strategy and charter.

(Continued from 22 March 2023.)

The Hon. T.A. FRANKS (16:53): I rise on behalf of the Greens as the spokesperson for disability to speak in strong support for this motion. On 2 April 2023, we celebrated World Autism Awareness Day. World Autism Awareness Day was declared by the United Nations General Assembly in December 2007 and designed to raise an understanding of autism and encourage early diagnosis and interventions.

The Greens believe that services and supports for people with disabilities are a core government responsibility. The Greens utilise the social model of disability, which encourages the removal of barriers that are preventing disabled people from equally participating in society with those around them.

This social model acknowledges that ableism exists and constantly enforces the barriers that autistic and neurodiverse people face. When combined with the affirmative model that embraces disability as an identity, it celebrates the contribution that neurodiverse and autistic people make to society, with an assertion of their right to have that contribution and their humanity recognised separately to that of their family's.

With this, we must consider the way we speak about those who are neurodiverse. Naming autism as a disorder is a very medicalised way of speaking. We often describe that as using deficit language, which says people have deficits rather than being neurodiverse, which we all are. Us in this chamber, we in this chamber, know better than anyone that words and language are powerful tools.

In 2018, an estimated 353,880 Australians were diagnosed with autism, which is approximately one in 70 people. This is a significant increase from the estimated 64,000 diagnosed in 2009. Autism is most commonly identified in children and young people, with one in 160 children between the ages of six and 12 years having autism.

I would like to specifically address the barriers to diagnoses faced in particular by autistic women and girls. In many areas of health men are seen and treated as the standard and women suffer as a result because their individualised needs are not considered. This is particularly prevalent for women when seeking a diagnosis for autism. Taken altogether, research suggests that it is unlikely that autism is equally common among men and women, yet growing evidence suggests that the current diagnostic procedures may fail to capture how autism manifests in women and thus exaggerates the already existing difference in prevalence rates.

Women have also been found to be diagnosed with autism at significantly later ages and therefore have experienced greater delays in the time from the initial evaluation to receiving a clinical autism diagnosis. It is important to reflect on how this may impact on numbers and statistics. A fundamental issue with the current diagnostic procedures is that the behavioural markers used are established based on the pre-existing conceptions of what autistic behaviours look like.

These criteria have been developed based on the predominantly male populations previously identified as autistic. It is important that autistic women and girls receive a diagnosis or recognise that they are autistic so they can access support; however, because of stereotyped ideas about what autism looks like and who can be autistic, many autistic women and girls struggle to get a diagnosis, receive a diagnosis late in life, or are misdiagnosed with conditions other than autism.

I hope the Malinauskas government, in the work undertaken through the Assistant Minister for Autism, adequately reviews the problems facing women on the spectrum. In saying that, however, I applaud the current work of the Malinauskas government in their consultation with the autistic and autism communities to co-design the state's first autism strategy and autism charter. The development and creation of the strategy is an important step towards creating a more knowledgeable and inclusive community where autistic people can meaningfully participate.

For far too long, disabled people have been shut out of decision-making and policy-creating affecting our community. This has perpetuated discrimination, it has perpetuated violence, abuse, neglect and exploitation, and it has seen devastating consequences providing solutions that are centred on these barriers in society as crucial to improving the ability of disabled people to thrive and contribute to their communities in a meaningful and positive and equal manner.

With that, I commend the motion. I note that there is a tabled amendment. I note with great concern that it does remove the recognition of the autistic community and the Greens will not be supporting the amendment.

The Hon. F. PANGALLO (16:59): I rise to speak in support of the Hon. Emily Bourke's motion on World Autism Awareness Day. As a parent who is acutely aware of the challenges autism can and does present, I commend the Malinauskas government on its groundbreaking Australian-first commitments to meet head-on the overwhelming needs of those with the disorder in our community.

People and children diagnosed on the autism spectrum are now at staggering levels compared to the time, 16 years ago, when my wife, Angie, and I learned that our youngest son, then seven, had Asperger's syndrome. We had little knowledge of what it was or what it meant for his development. When we went looking for help, there was truly little in the way of support available from professionals and in his school environment. He was shunned and shut out by classmates; he was friendless and rarely invited to their birthday parties. One teacher told us Connor was a troubled child because of his parenting and that he would never amount to anything in his life, let alone finish school.

Angie soon found other mums in the same situation and, with little support and nowhere to turn, this band of mums formed a support group which then grew into a not-for-profit charity called the Gold Foundation which now provides social skilling programs by trained coordinators for young children and teens. Hundreds have benefited from them and continue to do so. One mother told me recently how being involved in the foundation's Shine Like Gold coffee cart project—where he is paid to work as a barista—has transformed his life and he enjoys the experience of meeting new people.

As for Connor, he not only finished school but went on to be dux of the same school where we were once told he would not complete. He is now nearing the end of a double degree at Flinders University. He leads an active social life and he has made friends. As he often reminds us, he sees his neurodiversity not as a disability but as a gift.

The message here is that parents should never give up hope, nor should hope ever be denied for their kids. Early intervention, as we discovered, is vital and worthwhile and does lead to positive outcomes. This is why I can only praise this government for its foresight in recognising, prioritising and acting on the extraordinarily complex needs children on the spectrum have in a school environment by providing funding support to have an autism inclusion teacher in every public primary school and to increase autism trained staff in preschools.

Unfortunately, there are still some schools and teachers trying to grapple and fully comprehend this condition, both in the classroom and in the schoolyard. Sadly, a few fail to grasp or recognise the effect ignorance can have on a child's development or their behaviour. One constituent informed me of the complete overreaction by a deputy principal in a northern area school who suspended his seven-year-old granddaughter with developmental problems because she had written a simple, innocent note on which she only scrawled the words 'I love you' that she intended to give to a boy she played with.

While an incident like this highlights woke gender policies infecting our public school system, it also points to the need to have adequately trained staff to deal with the diverse behaviours arising from neurodiverse disorders and forge a better understanding among teaching staff, something the government has recognised and is now trying to address.

Another plus is the government's decision to formally recognise autism in our community as an important priority, with oversight by creating an Assistant Minister for Autism, in this case the Hon. Emily Bourke. I will note the work ethic, enthusiasm and sensitive understanding she has already brought to this role. I hope this policy pioneered in South Australia is urgently adopted and implemented by other states and territories, because autism is the growing medical enigma of the 21st century and its impact simply cannot be underestimated, ignored or dismissed. Nobody is yet able to put a finger on what causes autism or why it has become so prevalent in our society.

We have discussed the idea of six degrees of separation where six or so social connections are seemingly connected in some way. I would not think there is one person in here now who would not know of someone, be it a friend or a family member, who has a personal connection or experience with autism. More Australian families than we would expect are now living and having to deal with its complexities in some form.

Autism is not identical, which makes it all the more puzzling for researchers. According to figures collated by the National Disability Insurance Agency, 10 per cent of all boys aged five to seven in Australia are currently on the NDIS, the vast majority due to a diagnosis of autism or developmental delay. For girls of the same age, it is one in 25, but the rate continues to climb. It equates to one in 10 boys in preschool to year 12 around Australia who have significant and permanent disabilities serious enough to be on the NDIS, or at least one child per classroom.

There are 83,000 children across the country aged zero to six on the NDIS and another 140,000 aged seven to 14. More than half (54 per cent) of the scheme's participants aged 18 and under have autism and another 20 per cent have developmental delay. They are the fastest growing category of participants, which now numbers more than 585,000. Around a third have autism as their primary diagnosis.

Of the $34 billion cost of the NDIS in 2022-23, $8.25 billion is for those with autism as the primary diagnosis. The federal government is anticipating the NDIS budget blowing out to $90 billion in the next decade and disability minister Bill Shorten appears to be flagging putting the brakes on to ensure the system remains sustainable. However, I would hate to see the government have autistic kids in their sights to make their cuts to funding and services or even re-examine autism diagnosis. It is dangerous leaving that assessment in the hands of toe-cutting bureaucrats. It could lead to far worse outcomes in the community, and I would urge Mr Shorten to approach this with much caution and sensitive understanding of what is happening out there.

I recommend that members read an excellent feature piece by Stephen Lunn, published by the Weekend Australian on 22 April, which attempts to put the cost of autism into perspective from a family point of view and from a government funding outlook.

I commend the motion to the Legislative Council and thank the Hon. Emily Bourke for bringing this issue forward. I congratulate her and the Premier—who took an active interest in this area when in opposition and quickly recognised it was a massive and growing problem—and his government on the tremendous work they are doing in striving to make lives better for all caught in this heartbreaking situation, but especially the children. With that, thank you, and I will indicate that SA-Best will not be supporting the amendment put by the Hon. Heidi Girolamo.

The Hon. H.M. GIROLAMO (17:08): I move to amend the motion as follows:

Leave out paragraphs 3 and 4, and insert new paragraph as follows:

3. Calls on the Malinauskas government to ensure funding, focus and support for children is not forgotten in the rollout of its new autism strategy.

I rise to speak on this motion and to thank the Hon. Emily Bourke for bringing this to the chamber. Whilst we, as the opposition, are in full support of paragraphs 1 and 2, we feel that paragraphs 3 and 4 politicise what is a very important area. We do support the work that is underway but we just want to make sure that children are not forgotten in this process and that we are able to see effective outcomes with the autism strategy. It is the beginning of a journey and I am pleased to see that the focus is on what is a very important area.

April is recognised as Autism Awareness Month, with 2 April being World Autism Day. Autism is a condition that in the past has been shrouded in a lot of misunderstanding, misinformation and stigma. People with autism are often misunderstood as being antisocial or uncommunicative or even aggressive, but the truth is that people with autism are just like everyone else, with their unique personalities, interests and abilities. As a community, we should be continuing to provide support and services so that people living with autism have the same educational and employment opportunities to live their best life to the fullest.

I have seen firsthand with someone very close to me the challenges faced by people living with autism. I have also seen the incredible focus, brilliant minds and different perspectives that people with autism can provide to the community. The ability to think and focus on a particular area, which is often a great strength not experienced by all of us, can be a great benefit, whether in the classroom or in the workplace. This is why it is essential to recognise Autism Awareness Month in April and World Autism Awareness Day on 2 April. The month provides an opportunity to raise awareness about autism and promote an understanding and acceptance and advocate for the rights of people with autism.

One of the key messages of Autism Awareness Month is that early diagnosis and support services can make a significant difference in the lives of people with autism. The earlier the diagnosis, the earlier the supports can be put into place for children and families affected by autism. This can include speech and language therapy, occupational therapy and behavioural therapy. The benefits to early intervention support such as OTs, psychologists and speech therapists can help manage sensory challenges and support social interaction.

Having met with Autism SA recently, key issues raised were focused on continuing funding for early intervention and finding effective ways to decrease the intensive waitlists for support and services that are often unavailable and put even more pressure on individuals, families and our community.

Another important message of autism awareness is that autism can often be a lifelong condition, and people with autism may continue to face challenges throughout their lives. This is why it is important to provide ongoing support and opportunities for people with autism to reach their full potential. This can include inclusive education—tailored education at that—vocational training and employment opportunities similar to ones mentioned by the Hon. Frank Pangallo that are tailored to the strengths and abilities of people with autism.

Raising awareness about autism is not just about acknowledging the challenges that people with autism face, it is also about celebrating their strengths, their unique perspective and contribution to society. People with autism have made incredible contributions in fields such as art, music, science and technology, among others. By recognising and celebrating these contributions, we can promote greater understanding and acceptance of people with autism.

I would like to take the time to recognise organisations like KPMG, who have established neurodiverse communities that support these challenges, encouraging strengths and promoting inclusiveness in the workplace. This person-centred strength-based approach fosters a culture of learning, sharing and developing, while addressing some of the more common misconceptions and stereotypes that neurodiverse people may experience and utilising their strength at the same time in key areas such as cybersecurity and analytics.

To conclude, I call on the Malinauskas government to commit to continuing funding to Autism SA for their diagnostic services and to ensure funding, focus and support for children is not forgotten in the rollout of the new autism strategy. Let's work together to create a world that is more inclusive, more accepting and more supportive of people with autism.

The Hon. E.S. BOURKE (17:13): I would like to thank the honourable members who spoke in favour of this motion and spoke to this motion today. I know the Hon. Tammy Franks has been incredibly supportive throughout my appointment and I really do thank her for her feedback and guidance. I thank Angie and Frank and your family. You have been incredible. Seeing what you do at the Gold Foundation is quite remarkable, as is what you have done for the community.

I would also like to thank the Hon. Heidi Girolamo for her feedback today. I could not agree more, in that we do need to be focusing on community awareness. There are too many stereotypes about: what is autism? I want to just clarify a few things, because you are born autistic and you will pass away autistic. This is a lifelong diagnosis, and it is important that we not only focus on our children—because that is important and, as many people have highlighted today, the early diagnosis is essential in knowing who we are as individuals—but we also must provide support throughout life for people in the autistic and autism communities.

When we hear statistics that you are three times more likely to be unemployed than someone else with another disability if you are autistic, we need to be changing those statistics. We need people in the workplace, in a place where they provide dignity by having a job. We also need to look into what we are doing in schools. As the Hon. Frank Pangallo mentioned, his son, Connor, felt like he could never fit in at school just because the teachers in his school may not have had the knowledge that they needed to understand: what is autism?

I think it is really important that we do list what we have been doing as a government because it highlights a number of the concerns raised by all members here today, which all stem back to knowledge. If we do not have knowledge about what autism is, we cannot create change, nor if we are not providing that knowledge to our teachers in our classrooms and delivering on a commitment that is the largest commitment in the nation—that of creating the largest network of autism inclusion teachers. Only seven months ago there were no autism inclusion teachers in our schools and now 97 per cent of our public primary schools have an autism inclusion teacher. That is incredible—seven months.

They are going in and will be gaining the knowledge that they need to make sure that, hopefully, Connor—if he was at school in a few years' time—would not be going through the experience he went through, that there is an understanding and there is a knowledge of what autism is. We also have to make sure that we are listening to what the community wants, and that is why the strategy was so essential, and listening to the community about what should be in that strategy.

I am really happy to say to the Hon. Tammy Franks that there is a section that discusses the diagnosis process for women because it is an unknown area. Even today we are still learning so much more about what the diagnosis means for women who are autistic. I really am proud of what we have been able to achieve, and I know that the community has been fighting for a very, very long time to have their voices heard. I hope that we have been able to start that journey and start some change in our community and not only lead the nation in South Australia but hopefully we can lead the world.

Amendment negatived; motion carried.

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