Building 1, Level 2, 14 Aquatic Drive Frenchs Forest NSW 2086 PO Box 361, Forestville NSW 2087 www.autismspectrum.org au ABN 12 000 637 267 Senate Select Committee into Autism Autism Spectrum Australia (Aspect) submission July 2020 1. Introduction Autism Spectrum Australia (Aspect) welcomes the opportunity to provide a written submission to the Australian Senate Select Committee on Autism to inquire into and report on the services, support and life outcomes for autistic people in Australia and the associated need for a National Autism Strategy. Aspect is Australia’s largest autism-specific service provider, with one of the biggest autism-specific schools programs in the world. A not-for-profit organisation, our mission is to work with people on the autism spectrum of all ages to deliver evidence- informed person-centred solutions. All of our work is focussed on understanding, engaging and celebrating the strengths, interests and aspirations of people on the autism spectrum. Aspect strongly supports the establishment of a National Autism Strategy, developed in partnership with autistic people, their families and carers, and the autism community to provide a national roadmap to urgently improve access to diagnosis and educational support, employment prospects, social inclusion and improved physical and mental health outcomes for autistic people. We also support and welcome the Disability Royal Commission into Violence, Abuse, Neglect and Exploitation of People with a Disability and would encourage the Senate Select Committee to read our submissions to the Disability Royal Commission, which are available on our website and provide further insights into issues that are specific to the autism community and this Committee. In providing the following responses to the Select Committee Terms of Reference, we have answered the sections that have the most relevance to our expertise, work and services. a. Current approaches and barriers to consistent, timely and best practice autism diagnosis; Current situation and related issues Autism is a condition that affects how a person thinks, feels, interacts with others and experiences their environment. It is a lifelong disability that starts when a person is born and stays with them into old age. Every Autistic person is different to every other. Most of the behavioural features that characterise autism are present from a young age, however some features may not become fully apparent until an individual enters school, or even later in life. There is currently no established biological marker that is able to diagnose autism. A diagnosis requires a clinical judgement based on behavioural assessment, observation, and developmental history (Taylor et al., 2016). Diagnostic manuals (e.g., DSM-5 or ICD-10) provide clear behavioural criteria for diagnoses, and the use of assessment tools such as the Autism Diagnostic Interview- Revised (ADI-R), while the Autism Diagnostic Observation Schedule- Second Edition (ADOS-2) can assist in gathering information in a standardised manner. However diagnosis is not always easy due to the variability in the presentation of autism and the overlap between the behavioural characteristics of autism and other conditions. Because a level of clinical judgement is involved in making an autism diagnosis, accurate diagnosis also relies, at least in part, on the skill and experience of the clinician. While the DSM-5 diagnostic criteria for autism is typically used by diagnosticians in Australia, there has been considerable variation in the past between states and territories as to which health professionals are able to make a diagnosis. There have also been differences in diagnostic standards between different sectors and services (e.g., health, education, disability etc.). This has meant that a diagnosis made in one state/territory may not be “accepted” in another or that a diagnosis made by a health service may not be recognised by the education department. These differences in diagnostic standards can inhibit access to services for an individual and lead to unnecessary repeat assessments being conducted. In an attempt to address this, the National Guidelines for the Diagnosis of Autism Spectrum Disorder (Whitehouse et al., 2018) were developed to provide a standardised, consistent approach to autism assessment throughout Australia. All clinicians conducting autism assessments in Australia have been encouraged to use the protocol and approach as outlined in the National Guideline. This approach is used in all diagnostic assessments conducted by Aspect’s Assessment Service, however, these guidelines have not been adopted broadly at this stage, particularly in the private sector. Conducting a comprehensive assessment for autism that meets the requirements set out in the National Guidelines for the Diagnosis of Autism Spectrum Disorder is a lengthy process (e.g., a minimum of 4 to 6 hours plus report writing time) and requires health professionals to have expertise in the area of autism assessment. Given the 2 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020 time and expertise required, the cost of providing such assessments is considerable. In addition, public autism assessment services often have long waitlists and currently only provide services to young children. This means the only options available for many individuals, particularly adults and those living in regional/remote areas, is to: access private assessment services, which can be prohibitive to many due to cost, with financial assistance to access these services in the form of Medicare rebates only available for children under the age of 13 years. Or travel to a capital city to access either public or private assessment services, which can further increase the financial burden of the assessment process and can also be quite stressful and disruptive for families and individuals. These difficulties with accessing a comprehensive assessment for autism (e.g., cost, waitlists, accessibility of services, availability of clinicians with appropriate expertise etc.) means that people often experience a delay in receiving an autism diagnosis. While it is possible to make a reliable diagnosis of autism by 2 years of age (e.g., Lord et al., 2006), the average age of diagnosis in Australia sits at around 5 years of age (Bent et al., 2015; Gibbs et al., 2019). Diagnosis is likely to occur at an even later age for females, milder presentations, those living in regional areas, and those who also have other conditions or developmental concerns (e.g., Bent et al., 2015; Mandell et al., 2010). In addition, difficulties around accessing services in a timely manner mean that sometimes health professionals “cut corners” and provide a diagnosis without a comprehensive assessment in order to ensure that individuals can access intervention, support, and funding. This can reduce diagnostic accuracy and be detrimental to the individual in the long run. The timely and accurate diagnosis of autism is important, as it allows individuals to access appropriate early intervention services. Children who receive early interventions demonstrate improved cognitive, developmental and adaptive functioning, enhanced language and social skills, as well as a decrease in symptom severity, cognitive impairment, and maladaptive behaviours as compared to children who are treated later (e.g., Clark et al., 2018; Magiati et al., 2014; Vismara & Rogers, 2010). There is also some evidence to suggest that access to intervention and support prior to 3 years of age is likely to lead to better outcomes for the individual on the autism spectrum (e.g., Clarke et al., 2018; Zwaigenbaum et al., 2015). Aspect strongly believes it is important for a child on the autism spectrum to receive an early diagnosis, preferably before the age of 3 years, so that they can access appropriate early intervention and achieve optimal outcomes. RECOMMENDATIONS: Increase provision of assessment services. To assist in reducing access difficulties and decreasing waitlist times. The need for increased assessment services is 3 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020 particularly apparent in regional/remote areas, although waiting lists for public services can also be long (i.e., 12+ months) in some metropolitan areas. Provision of assessment clinics, and capacity building in regional areas. In the past, Aspect Assessments has received funding from the NSW government to provide assessment clinics for low income families residing in regional/remote areas. Such programs have not been funded for several years now, meaning that some people in regional areas are not able to receive an assessment in their local area due to the relatively high cost of private assessments. The use of technology to provide assessment services. Technologies such as telehealth could help to address some of the issues around access for people living outside of the capital cities. In response to the Covid restrictions, Aspect has implemented and is evaluating a telehealth diagnostic service which could be a longer term option for regional and remote families. Training and education for those conducting assessments. Further training for all frontline assessors would be beneficial, to increase awareness of the ways that autism can present across the lifespan and ensure that diagnoses are being made in a timely, consistent manner for all people, irrespective of age or residential location. Additional