Department of the Senate
PO Box 6100
Parliament House
Canberra ACT 2600
Attention: Senator Hollie Hughes and Members of the Senate Select Committee on Autism
Autism Awareness Australia welcomes the opportunity to prepare a submission for the committee in the hope that it will contribute to the development of a National Autism Strategy.
Founded in 2007, Autism Awareness Australia (AAA) is a not-for-profit autism education and awareness organisation. Our goal is simple: To improve the lives of all Australians on the autism spectrum and the families who love them.
As the country’s leading voice for autism families, Autism Awareness Australia aims to spark positive change by increasing education and understanding of autism in Australia.
Autism Awareness’s campaigns and events have reached millions of Australians. We have delivered the majority of the programs free of charge across the country, including in rural and regional communities.
Autism Awareness Australia has long been led by parents of children with autism. Our CEO has a child with autism, as does 75% of our Board and 50% of our staff. Many contributors and volunteers over the years have either had autism or were the parents of children with autism.
We are currently working on our next large project, Autism: What Next? which was funded under the NDIS ILC program last year. As part of this project, in May 2020, we launched the Autism: What Next? National Survey that has had over 950 responses. That feedback has informed some of the information in this submission.
P.O. Box 61
Rozelle NSW 2039
TERMS OF REFERENCE RESPONSES:
a. current approaches and barriers to consistent, timely and best practice autism diagnosis;
Issues:
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Australia has not implemented national diagnostic guidelines for autism. There is considerable variability across the states in both quality, rigour and what assessment tools and professionals need to be involved in the diagnostic process. Some individuals will receive a diagnosis after one or two visits to a Paediatrician, whilst other families will undergo thorough assessments from a multidisciplinary team. The quality of this process is heavily dependent on clinical experience and skill.
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There are long waitlists across many state public health assessment centres, leaving many families to wait for months to have their child assessed.
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There is currently no funding available for diagnostic assessment. As such, parents either wait on the public assessment system or try to find the funds for often expensive private diagnostic services.
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GP’s often miss the early signs of autism and many minimise the concerns of anxious parents and often don’t refer on until pushed further.
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Delays by Paediatricians with the ‘wait and see’ approach. Often, parents will be told to return for a second observation 6 months later.
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Delays in diagnosis of older children and adults due to a lack of knowledge of the signs of autism in this age bracket and a lack of diagnostic services and clinical expertise in this area.
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In our recent Autism: What Next? National Survey, 60% of parents reported unnecessary delays in getting their child a diagnosis and 78% of families reported wait times to be a factor in this.
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We know the importance of early intervention for young children with autism, so reducing the age of early diagnosis should be a priority for any National Autism Strategy.
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Problems with the Early Childhood Early Intervention (ECEI) program has resulted in many families not understanding that they can receive some funding and support from the NDIS whilst they are waiting on the formal diagnosis.
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Need for greater understanding and training for medical and allied health professionals to recognise autism through numerous age and gender profiles, not just what autism looks like in toddlers.
Recommendations:
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National audit of resources required to deliver timely diagnostic services in the public and private systems across all states.
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Improved MBS rebates for private and multi-disciplinary assessments.
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Implementation of National Guidelines for the diagnosis of autism (all ages).
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National Autism Strategy should include a focus to reduce the age at which children are being diagnosed.
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Rural and regional families to have access to assessment via Telehealth by clinicians who specialise in remote diagnostic services.
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Community Health Nurses better trained in the early signs of autism as well as a developmental inclusion checklist to be included in newborn’s Personal Health Record books (in NSW known as the Blue Book).
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Work with the Australian Medical Association, the Royal Australian College of General Practitioners and the Australian College of Rural and Remote Medicine to ensure their members have adequate training in knowing the early signs of autism in both young children as well as adults who may be presenting with anxiety-like symptoms that could be masking underlying neurodevelopmental conditions.
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As part of National Diagnostic Guidelines, paediatricians and developmental paediatricians, who are unable to make a diagnosis of a child during an initial assessment, should immediately refer the family to a comprehensive assessment from a multidisciplinary team. If the child is deemed at risk of developmental delay, automatic referral should take place instead of asking the family to return in 6 months for a second assessment.
“That I had been believed, I wasn’t just a neurotic mother, but in fact, I know my child and there was something seriously needing attention” - AAA community member response survey
b. the prevalence of autism in Australia; Issues:
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There has been a poor history of collating data on autism diagnosis due initially to the lack of funding or services available to those children. The data provided to the NDIS was initially informed from Centrelink and HCWA programs, which saw the NDIS underprepared for the numbers of people with autism they would need to support. We are still playing catch up in this area.
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There is currently no formal recording of the number of adults with autism level 1 in Australia. Many of these individuals are not supported under the NDIS but who have needs and mental health supports that go unmet.
Recommendations:
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The development of a National Autism Register to monitor autism prevalence, enable research and better inform public planning of the needs of our community across their lifespan. This information can inform the NDIS, state education systems and the wider disability employment sector.
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That the National Autism Register deidentifies individuals to protect their privacy.
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That the National Autism Register includes details of teens and adults receiving their diagnosis later in life.
d. international best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity;
Issues:
- Given there has historically been very limited funding for quality early intervention for children, this area has been unregulated for some time.
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The NDIS’ focus on ‘Choice and Control’ is imperative but parents need guidance and restrictions to only use NDIS funds for early intervention supports which are evidence-based and individualised for the child.
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There remain very few early intervention options for rural and regional children.
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There has not been enough funding directed at long term clinical trials of intervention effectiveness which would be unacceptable in all other areas of child health and development.
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Early interventions are not ‘all created equal’ and interventions in very young children should focus on skill development and positive behaviour support.
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The concept of ‘early intervention’ should be early after the diagnosis, rather than just early in life. Early Intervention shouldn’t be a concept only used for young children with autism. Teens and adults diagnosed with autism later in life also need interventions and support.
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Workforce capacity limitations have led to a shortage of placements in evidence-based early intervention services across Australia.
“There are simply not enough people qualified and NDIS billing approved so the market power is in the service providers [sic]. My son’s NDIS plan is approved for $38,000 but there is no provider with less than a 12-month waitlist in our region (Hills District, Sydney) so I will lose the funding support” - AAA community member response to Autism: What Next? Survey
Recommendations:
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We call for the development of a National Quality Framework for best practice in early intervention.
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NDIS planners need better training and guidance on evidence-based early intervention options, to help families decide goals and put together plans that will help the child reach their full potential.
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Autism Awareness Australia will work with professional bodies, clinicians, families and individuals with autism to ensure our Autism: What Next? platform informs parents of their options.
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The National Quality Framework should also develop pathways and options for teens and adults diagnosed later in life.
f. the interaction between services provided by the Commonwealth, state and local governments, including:
Issues:
- The autism community sits in the middle of the Venn diagram of Health, Education and Disability but rather than get the attention of all three areas of government, it is often lost and mismanaged between the cracks of these departments both at a state and federal level.
Recommendations:
- The development of a National Autism Strategy must include a commitment to better align service delivery between Federal and State Governments, service providers, clinicians and families. It could be done in several stages:
Appointing an independent national taskforce (with a fully funded secretariat) chaired by a leader with lived experience. The taskforce could spearhead a strategy that has time specific, incentive based funding deliverables that must be met. It would report directly to the Minister.
For example, it could include immediately commissioning a National Registry - that uses the Western Australia model as it’s foundation with appropriate data sets added to registration to help inform planning, services and capacity. Concurrently, the taskforce will get to work on addressing other broader issues with three working groups sitting across Education, Disability & Health.
i. health and mental health, Issues:
- Under a new plan, the NDIS intends to re-assess every child entering the scheme using a suite of ‘functional capacity assessment tools’, thereby discarding assessment recently completed by the State based health systems. This is a duplication and waste of resources and highlights a fundamental mistrust between the federal NDIS and state-based health systems.
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Federally funded programs such as Headspace are unable to treat young people with autism, as it is seen as something separate from and in addition to their primary diagnosis.
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People with autism who also have mental health issues are sometimes detained in adult mental health facilities which are inappropriate for people with autism. Their mental health needs need to be managed by taking into considerations the effect autism may have on the treatment and management of the individual.
Recommendations:
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Better alignment and connectivity between the Federal NDIS Scheme and state Mental Health and Justice systems. This could be achieved as part of the National Autism Strategy that would include both Federal and State levels of Government.
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Making sure that there is suŨcient mental health support for autistic people, including young people, and their families. The state of mental health support is severely lacking at this time.
ii. Education,
Issues:
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Similar to the issues around diagnosis, we currently do not have national guidelines for the education of children with neurodevelopmental conditions. There is no uniform agreement on the most appropriate and best-practice methodologies for children with autism (and other disabilities) in our education system. We have different rules and arrangements in different states, often with inordinate autonomy going to individual schools and principals. The ‘local school / local decisions’ policies have had a detrimental effect for families of children with autism wanting to enrol their child in school.
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Regular ‘gate-keeping’ by schools not wanting to enrol students with autism, especially those with additional learning needs and challenging behaviour.
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No national commitment to inclusive education, nor a roadmap on how we may re-design the future of education in this country to ensure it includes ALL Australian children.
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No plan to stop the ongoing expulsion and suspension of children with autism in schools. This includes parents being called into schools to collect their children during the school day as there is no internal capability (or will) to manage the child in the school setting and implement strategies to meet their needs.
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Lack of before and after-school care for children with autism unfairly affects families with working parents and limits employment options (often for women)
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Special education and more restricted schooling options are often chosen by families due to safety. They would like their child in a more inclusive educational environment but are often not catered for.
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The education system is fundamentally floored by design in using minimally trained ‘teachers aides’ (SLSOs) supporting teachers (who will have varied training themselves in autism and positive behaviour support).
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NDIS funding for children with autism can not be allocated to supports they may need during school hours as this is seen as ‘double-dipping’.
Recommendations:
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Need for National Education Guidelines (including rights) for children with autism and other neurodevelopmental conditions.
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A commitment to and a national pathway towards a goal of inclusion in education.
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Part-time, home-schooling and flexible schooling options are available for families.
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Specialist mobile inclusion and behaviour team who can be sent into schools with the most need to design individualised programs which will help with skill development and enable children with autism to remain enrolled and successfully learn.
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Specialist face-to-face help for rural and regional schools in order to train the staff in-vivo and implement telehealth systems for ongoing management of the situation.
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Specialist inclusion and behaviour support workers to replace the ‘aide’ system in state education departments.
“Mainstream school system whilst they preach inclusion has failed my child due to lack of resources and teacher education. We had to put our son in an expensive private specialist school. Please help our children get the education they deserve, no matter how “ diŨcult “ that seems to be for the school system.” - AAA community member response to Autism: What Next? Survey
iii. Employment,
Issues:
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According to ABS 2018 Autism in Australia report, the unemployment rate for people with autism spectrum disorders was 34.1%, more than three times the rate for people with disability (10.3%) and almost eight times the rate of people without disability (4.6%).
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Services and support for children leaving school is patchy and not well integrated. Families often refer to a service ‘cliff’ which their children fall off when formal schooling is finished.
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The recent focus on the benefits of people with autism in the workplace is excellent, however, there has been far too much focus on those on the spectrum with high I.Q’s and high-level technical skills. Whilst this is a wonderful beginning, we can not forget individuals with a different presentation of autism and different skill set. The rights of people with autism who want to and can work should be a priority.
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Disability Employment Service (DES) system (as it relates to autism) is a design failure. The DES system rewards service providers who find employment for individuals with autism however what’s more important for people with disability seeking employment and career opportunities is the number of hours worked, the remuneration and conditions, and the longevity of the position.
Recommendations:
- DES System (for individuals with autism and other neurodevelopmental conditions) should be dismantled and folded into the NDIS. Providing supports during the high-school years to build skill capacity and job readiness is critical for the successful transition to work. Having the NDIS transition with the individual into this new setting would be ideal.
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Inclusion training for industries/workplaces on how to support autistic employees, in recruitment, employment, training and professional development.
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The University of Sydney’s current ‘Switched On’ program is a perfect example of what is needed. The Switched On research team, in consultation with employers and lived-experience job seekers, have developed a workplace toolkit for employers which could be scaled nationally.
“Autistic adults have very few services and were ignored for many many years. Too much is purely focused on the parents and children with new diagnosis and very little effort made with the adults.”
- AAA community member response to Autism: What Next? Survey h. the adequacy and eŨcacy of the National Disability Insurance Scheme (NDIS) for autistic people, including:
Issues:
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Our families often report that NDIS planners have a poor understanding of autism. Given the wide spectrum and multiple presentations of ASD, this is not surprising but does raise significant issues. Understanding suitable interventions and supports for different children with varied presentations of autism are critical.
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The NDIS plan to re-assess children who have recently been formally diagnosed with ASD, to understand ‘functional capacity’ is a duplication that will be very diŨcult to resource.
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Inconsistency when contacting the Agency. Parents report often being told different information from one phone call to the next.
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NDIS plans are not integrated with the state education department supports for school-aged children. Having these supports complement one another will assist the child to be more successful in the classroom setting.
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Current DSM-V labelling of autism levels 1, 2 and 3 are often insuŨcient to meaningfully contribute to the planning process. There aren’t three versions of autism, nor will there be three levels of support. All planning and assessment must be on individual needs.
Recommendations:
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School-aged children with autism should be able to allocate part of their funding toward supports that can be accessed at school if that’s where the greatest need is. A psychologist or behaviour analyst working with a child should be able to observe and implement supports within the school setting if that will result in the child remaining successfully enrolled and learning.
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Clearer pathways and messaging needed for families with at-risk children who can get access to NDIS supports whilst waiting for a formal diagnosis.
i. the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy;
Recommendations:
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With the National Disability Strategy Position Paper about to be released, heralding the start of stage 2 consultations, there is an urgent need to begin work on an National Autism Strategy that can align with this important work.
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The National Autism Strategy needs to slot in and work alongside Australia’s National Disability Strategy in order to recognise the real and individual needs of individuals with autism, and their family’s. We need a nationally coordinated approach which sees collaboration at all levels of government.
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Autism Awareness Australia would welcome the opportunity to provide further input to the development of the National Autism Strategy.