Assessment, diagnosis and early intervention
Autistic Victorians get the diagnosis and supports they need early in life
Autistic people and their families need access to timely, high-quality diagnostic services and early intervention supports. There is broad agreement among experts that a diagnosis made early in life by qualified and experienced practitioners results in better outcomes for autistic people. However, the inquiry and consultation highlighted waiting lists for publicly funded diagnostic services, challenges in diagnosis of complex conditions, and the need for skilled multidisciplinary teams in diagnosis and intervention.
"It's difficult to make up time lost in early intervention. My son could have been diagnosed 12 months earlier if my GP had the knowledge and confidence to refer us on."
– Survey respondent
There are waiting lists to access Victorian government-funded diagnostic services, with many families currently resorting to costly private system options. There is a need to ensure equitable and timely access to diagnosis and early intervention services for autistic people, regardless of age, gender, cultural background and location.
Two core areas for improvement have been identified. First, early identification and pathways to diagnosis need to be improved. Second, there needs to be increased access to timely diagnosis carried out by experienced teams of appropriately qualified professionals.
Early identification and pathways to diagnosis
Early diagnosis gives families the information they need to access services that best support their child's development and inclusion. Often the pathways to diagnosis are not well articulated, sometimes causing additional stress and uncertainty and contributing to delays in assessment.
The consultations highlighted the work of peer support networks, advocacy groups and peak bodies to support people's journeys through the diagnostic process. By supporting the expansion of these groups, Victorians can be given greater access to information and advice on pathways to diagnosis.
Health and education workforces – including maternal and child health nurses, general practitioners, early childhood education and care professionals and teachers – play an important role in assessing whether a child, young person or adult may need further screening and referral for an autism assessment. The inquiry noted professionals often need greater capability in recognising characteristics or behaviours associated with autism. In particular, there is a need for improved understanding of girls and women, Aboriginal people and people from diverse cultural backgrounds who are autistic.
Better access to timely diagnosis
In all areas of Victoria, child and adolescent mental health services or child and youth mental health services provide assessments and diagnosis for autism in children. Each of these services employs an autism coordinator to support the autism-related diagnostic and referral processes. The public health system also provides autism components of assessment and diagnosis through other health services including some primary health services and hospitals.
In most cases a conclusive diagnosis for autism needs to be made by a multidisciplinary team including a paediatrician (or child and adolescent psychiatrist), a psychologist, a speech pathologist and, in some cases, an occupational therapist.
Most child and adolescent mental health services provide the recommended specialised multidisciplinary diagnosis assessment. However, workforce recruitment and retention in some professions has made providing comprehensive public assessment and diagnosis difficult in some parts of Victoria.
In October 2018, the Autism Cooperative Research Centre and the National Disability Insurance Agency (NDIA) released national guidelines for autism diagnosis. The Victorian Government will encourage uptake of the new guidelines, particularly through relevant commitments listed below.
2.1. Improve access to autism assessment, diagnosis and early intervention
- Establish a 2019–20 funding round to encourage innovative models of delivering assessment and diagnosis, in line with the new national guideline
- Partnerships and models that blend funding streams will be encouraged. Funded projects will have a focus on better outcomes for:
- rural and regional Victorians
- intersectionality and diversity
- people with complex needs
- adults who have missed out on assessment and diagnosis.
- The funding round will also be used to clarify and set in place ongoing policy arrangements within the Victorian Government relating to autism assessment and diagnosis.
- Through the Child Clinical Specialist Initiative in all child and adolescent mental health services, continue to improve leadership and responsiveness in engaging, assessing and treating children aged up to 12 years old with severe challenging behaviours, including those with autism
- Undertake a needs analysis to determine the training needs of maternal and child health nurses across the state in identifying children under three years of age with signs of autism and providing appropriate referrals
- Develop and deliver a professional development package for maternal and child health nurses, based on the needs analysis, that will build their skills and confidence in:
- developmental surveillance for autism in children under three years of age
- providing referrals and supports for children identified as requiring assessment
- Provide support and professional assistance to government-funded kindergarten teachers and early childhood educators to support the inclusion of children with additional needs, including autism
- Develop an inclusive early education web portal that gives parents and early childhood educators a single source of information about inclusion for young people with developmental delays, including autism
- Explore ways to improve access to multidisciplinary assessment and diagnosis in rural and regional areas such as through technology, training opportunities, mentoring and flexible service delivery models
- Build the capability of child and adolescent mental health services to assess and diagnose autism in accordance with the new national guidelines
Health and wellbeing
A recent study from New South Wales found that autistic people have elevated mortality across the lifespan. The overall comparative mortality rate is about twice that of the general population.1
Poor mental health is more common in autistic people than in the general population and is associated with long-term negative outcomes.2
Autistic people may face barriers accessing health and mental health services due to environments interacting with sensory sensitivities and communication styles. Additionally, autistic people attending services to address a specific health need may find that clinicians' attention is unhelpfully diverted away from their presenting needs and towards managing their autism.
There is a need for stronger collaboration between services and greater understanding of autism among health (including mental health and allied health) professionals. There is also a significant need for work to ensure that autistic people's encounters with health services do not direct them to unsuitable care options and do not use health resources and programs to address other underlying issues such as behaviours of concern.
Stakeholders said it is important that health and allied health service providers receive autism training.
The consultations for this plan identified examples of good practice among health professionals across Victoria to build services that welcome and include autistic people. Several commitments below aim to encourage and replicate good practice of this kind.
Building understanding about autism among health professionals is essential for health services to be welcoming, accessible and easy to navigate. The consultations also highlighted the need for strong leadership and collaboration, and for better connections between health professionals and autism organisations and advocates.
The Victorian Government has a role in supporting the professional development of hospital, community and other health workforces. This will help to build more responsive and inclusive services that better meet the diverse needs of autistic people and their families.
Case study: Peninsula Health emergency department
"I'm enjoying that I can apply my personal experience and my knowledge to fill this need bit by bit and improve the care we provide."
– Antje Walter, parent of two autistic children
Antje Walter knows firsthand how stressful a trip to the emergency department (ED) can be for an autistic person. Two of her children are autistic; she is also a nurse in Frankston Hospital's ED.
"I can understand what it's like from a health professional's point of view trying to assess, treat and examine these patients, but I also know what it's like as a mum, as a carer," explains Antje.
In 2016, as part of her Graduate Diploma in Advanced Emergency Nursing, Antje wrote a paper on how EDs can improve the care they provide for patients with autism. It has led to Antje being appointed to introduce some of the ideas, along with other suggestions from patients, at Peninsula Health.
"We've developed a passport for individuals with autism which either the individual themselves or their carer can fill out when they come into the ED," says Antje.
Patients or their carers can use the passport to identify their particular needs. For example, are they sensitive to noise, lights, touch or pain? What triggers behavioural challenges? Are they verbal? The passport can also become part of the patient's electronic health record, making it easily accessible every time they present to a hospital.
Antje has also developed some communication materials based on a communication system used in all special development schools.
"On one board, they can point to things they may need. If something hurts, they can point to exactly where it hurts, without having to tell us verbally."
Another board is used to show what will happen during an assessment, such as looking into a patient's ears or checking their temperature.
"By using pictures the patient can be prepared, and it makes them a lot more cooperative with the assessment. It also makes it a lot less stressful for them when they're already feeling unwell and have had their routine completely upset."
The passport and communication boards are now in use at Frankston ED. Antje has also been running education sessions with staff who plan to use the materials.
She has also recently put together boxes with visual, tactile and auditory sensory equipment, such as noise-cancelling headphones, to reduce sensory overload. These are in the paediatric area and can be used to help calm paediatric and adult patients affected by stress and anxiety.
2.2. Increase understanding of health and wellbeing needs, including mental health needs, for autistic Victorians
- Support a Royal Children's Hospital pilot to reduce avoidable presentations and length of stay for autistic children in its paediatric emergency department
- This project aims to decrease crisis presentations to EDs, reduce the number and duration of admissions to hospital, and radically improve the care for Victorian autistic children and adolescents, as well as children and adolescents with intellectual disabilities and behaviours of concern.
- As part of implementing Victoria's 10-year mental health plan, continue to strengthen the public specialist mental health system to ensure children aged up to 12 years old and their families have access to the support they need when they need it
- Consider approaches to strengthen the capability of clinical adult mental health services to recognise, assess and respond appropriately to autistic adults
- Test workforce models that can be expanded across Victoria to improve the health and mental health of autistic people through the Advancing Practice in Allied Health Workforce Funding Program
- Support the delivery of health workforce information sessions about autism in women and girls
- Identify needs for accredited autism training to improve services for autistic people
- Build autism competency across workforces through Department of Health and Human Services policies and guidelines to skill health and mental health workforces to respond positively to autistic Victorians
- In consultation with peak bodies, identify available information and resources on autism as well as further information that needs to be developed
- Explore training opportunities for rural and regional areas through greater use of technology, such as telehealth, mentoring and peer support/secondary consultation models
Housing
Housing provides a foundation for all Victorians to lead independent and healthy lives. There continue to be barriers for autistic people in accessing affordable, safe and sustainable housing. The inquiry highlighted the current shortage of quality housing for people with disability, including autistic people, and the varying levels of housing support autistic people require, depending on their level of need and presence of co-occurring conditions.
Consultations also highlighted that we need to understand better the breadth and depth of the housing challenges for autistic people to drive greater oversight and accountability.
There are opportunities to consider existing housing options and supports for people with specific housing needs, and links with the NDIS such as short-term accommodation.
Innovative approaches will help autistic people access appropriate and affordable housing. This will contribute to long-term benefits for autistic people including improved social inclusion, independence and economic participation.
2.3 Respond to the housing needs of autistic Victorians
- Continue the Victorian Housing Register, which started in September 2016 and brings together public and community housing waiting lists into a single place
- The register provides more equitable access to public and community housing, including for autistic Victorians, with places on the register determined by eligibility and current situation, creating a fairer system for all.
- Together with key stakeholders, identify the needs of autistic people who are accessing public housing to guide specifications for new and upgraded housing
- Consider options to promote the use of the Housing Options Finder, which helps Victorians understand their rights and pathways to access social housing
- Strengthen information in the Housing Options Finder about how various circumstances, including autism, are considered through the Victorian Housing Register
- Through Absolutely everyone, increase the accessibility and affordability of housing for all people with disability, including those with autism, through initiatives such as private rental brokerage, increasing the supply of community housing and better meeting accessibility and adaptability needs in new public housing construction
- Through Homes for Victorians, implement the Social Housing Growth Fund to fund projects to deliver more social housing that will be adaptable and flexible and able to support eligible clients with special needs
- The fund's key aim is to underpin new approaches to deliver social housing. Over the next five years the fund will support up to 2,200 new social housing places.
Sport and recreation
Sport and recreation are vital to Victoria's social and economic life. Participation in sport and recreation is important for health and wellbeing and can contribute indirectly to engagement in other areas including education, training and employment. The inquiry highlighted the need to increase activities and programs so more autistic people can take part in sport and recreation.
The government is working with partners in the sport and recreation sector to create more opportunities for people with disability, including autistic people, to take part.
2.4 Increase participation in sport and recreation for autistic Victorians
- Develop programs and partner with community organisations to make public parks more accessible and inclusive for autistic people
- Develop a new specialist autism inclusion program in consultation with sports organisations and the autism community to provide more sport and recreation opportunities across Victoria for autistic people
- Host an inclusion forum and establish an ongoing network of sporting organisations, local governments and the autism community to build awareness of the needs of autistic people and build the capacity of sporting clubs and local governments to meet these needs
- Expand the successful AFL Auskick program for children with autism to other sports such as Special Olympics, swimming, netball, hockey, tennis, tenpin bowling, golf, gymnastics, outdoor recreation and horse riding through the Access for All Abilities program
- In consultation with the AFL, provide a new sensory room using the principles of universal design as part of the redevelopment of Marvel Stadium
- Expand the reach of Access for All Abilities Play (a free information and referral service) from a metropolitan service to a statewide service to assist people with disability across Victoria to become involved in sport and recreation
- Promote local governments' adaption of recreation sites and programs so they meet a diverse range of needs, including the needs of autistic people
Case study: Museums Victoria's Autism Friendly Museum
"Your autism-friendly page is a breath of fresh air and your social stories will be of use to many. Bravo to you all on being so proactive with kids with ASD; it warms my heart to see a company be so inclusive!"
– Parent of an autistic child
Museums Victoria welcomes just under two million visitors each year to Melbourne Museum, Scienceworks and the Immigration Museum. Visitors represent a wide range of community members, including autistic children and adults.
Since 2014 Museums Victoria has worked with partners Amaze and the Department of Education and Training to serve autistic people visiting their museums.
Museums Victoria's Autism Friendly Museum initiative welcomes autistic people and their families and schools by providing better information, a sense of welcome and resources to support independent access and participation. Actions include:
- raising autism awareness among front-of-house staff and supporting staff to be confident in welcoming and engaging autistic visitors
- including online resources in the form of social stories that show children what they may see and experience during a visit to the museum
- maps of low- and high-sensory spaces at the Immigration Museum, Melbourne Museum and Scienceworks
- communicating internally and externally about the project and the web resources to ensure awareness and community use
- continuing to evaluate and update the social stories and maps with autism audiences and stakeholders.
Since being published in mid-2016, more than 30,000 visitors have viewed the Autism Friendly Museum homepages, and more than 4,000 have accessed the social stories.
Museums Victoria is now producing resources for very young visitors, including the social story for the Pauline Gandel Children's Gallery at Melbourne Museum. Social stories for the new Ground Up exhibition at Scienceworks and for outreach visits to kindergartens are also available.
Families with autistic children have provided an important contribution to developing the social stories and the sensory maps to make sure they are useful.
Case study: Parks Victoria's autism-friendly visits
Parks Victoria is increasing the accessibility of its parks for autistic people by providing "social scripts".
Developed in collaboration with Amaze, the social scripts have photographs and simple text to show children what they may see and experience during a visit to a park. Parents can use this information to create a story that best suits their child and their planned park visit.
The social scripts are available on the Autism Friendly Parks webpage.3 There are a variety of park experiences for autistic people to participate in.
The social scripts are also available in Key Word Sign Australia format to support children who are learning to use Key Word Sign to communicate.
In 2018 Parks Victoria won a national tourism award for this initiative under the Specialised Tourism Services category.
National Disability Insurance Scheme
The NDIS represents a significant opportunity to transform the lives of Victorians with disability and their families and carers.
The inquiry identified two key areas in which the NDIA can better support autistic people and their families: first, by providing clear and timely information about the NDIS to potential participants and participants; and second, by ensuring NDIS planners have the skills and knowledge to engage with autistic participants.
The Victorian Government is committed to maximising the benefits of the NDIS for autistic people in Victoria, including people in rural and regional areas, Aboriginal Victorians, Victorians from culturally diverse backgrounds and LGBTI+ Victorians. The government will undertake a range of actions to ensure autistic people successfully transition to the NDIS, including advocacy, monitoring and supports. These actions will be informed by the recommendations of the inquiry and ongoing consultation with autistic people, their families and the sector.
The Victorian Government understands that the quality of services and safety of autistic people are paramount. The powers of the Disability Services Commissioner have been strengthened to support a "zero tolerance" approach to abuse of people with disability, including autistic people. The sector has also been consulted about introducing a registration and accreditation scheme for disability workers in Victoria.
2.5 Undertake broad-ranging advocacy to get the most out of the NDIS for autistic Victorians
2.5.1 Use Victoria's role on the Disability Reform Council to advocate for the needs of autistic Victorians in the NDIS
- Engage with the Commonwealth and other states and territories to ensure that no autistic person loses existing protections due to transferring to the NDIS
- The government will retain responsibility for quality and safeguards for autistic people who are not NDIS participants.
- Advocate for improved outcomes for NDIS participants, including timely access arrangements and appropriate levels of behavioural support
- Continue to advocate for the diverse needs of autistic people and their families to the NDIA through advocacy as a member of the Disability Reform Council, including communicating the findings of the inquiry and this plan to the council and the Commonwealth Minister for Social Services
- Advocate for services currently available under the Commonwealth's Helping Children with Autism program, or their equivalent, to be available under the NDIS
- Advocate for innovative housing models under the NDIS that can meet the needs of autistic people
2.5.2 Support service providers and autistic Victorians to transition to the NDIS
- Strongly advocate for improved access and planning outcomes for autistic NDIS participants, with a focus on the experience of participants with complex needs
- Implement the Transition Support Package to help Victorians with disability, their families and carers, the disability workforce and service providers to transition to the NDIS
- Continue to provide early childhood intervention services that ensure children receive appropriate therapy and supports during their transition to the NDIS
- Children who are ineligible for the NDIS based on residency grounds and who meet the program requirements will continue to receive early intervention services.
- Continue to advocate for NDIA-registered service providers of early childhood intervention to deliver evidence-based practices
- Invest in workforce development, training and skills to build a world-class disability workforce in Victoria through the government's Keeping our sector strong: Victoria's workforce plan for the NDIS
- Keeping our sector strong provides funding to identify and implement best practice approaches to supporting people with high and complex needs and behaviours of concern.
- Build the readiness of community autism organisations for the NDIS
- Engage the Aboriginal community to deliver Aboriginal cultural safety and competency training to autism-specific service providers
- Establish place-based Aboriginal disability coordination and planning networks in each division of the Department of Health and Human Services to help the Aboriginal community to engage with the NDIS
2.5.3 Monitor the experiences and outcomes of autistic people transferring to the NDIS
- Work with the NDIA to monitor the experiences of and outcomes for autistic people and their families in accessing the disability supports and respite they needs
- Closely monitor the NDIS' Early Childhood Early Intervention scheme to ensure services are adequately provided across Victoria, particularly in rural and regional areas
References
[1] Hwang YI, Srasuebkul P, Foley KR, Arnold S, Trollor JN 2019, "Mortality and cause of death of Australians on the autism spectrum", Autism Research, vol. 12, pp. 806–815
[2] Brugha TS, McManus S, Bankart J, et al. 2011, "Epidemiology of autism spectrum disorders in adults in the community in England", Archives of General Psychiatry, no. 68, pp. 459–866
[3] For more information, visit the ParksVictoria website.
Updated