Senate Select Committee Into Autism

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.

 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.

 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 funding and financial assistance for individuals and families who need assessment services. There are currently no Medicare rebates for children 13 years and over, or adults, the NDIS does not fund diagnostic assessments and there are very few public services for individuals over 6 years of age. Therefore, the only option available to many people seeking diagnostic assessment for possible autism spectrum disorder is a private, fee paying service. This is financially out of reach for many people, meaning that they may miss out on accessing intervention and support because of their difficulties obtaining a diagnostic assessment. Options include increasing the Medicare rebate, extending the rebate beyond 13 years of age and additional government funding for assessment services.

b. The prevalence of autism in Australia

Current Situation and related issues The current prevalence of autism worldwide is considered to lie between 0.9% and 1.5% (Fombonne, 2020), and does not appear to differ significantly on the basis of culture, ethnicity, or socioeconomic factors (Lord et al., 2020).

Aspect estimates that in Australia 1 in every 70 people is on the autism spectrum. This prevalence rate is based on recent autism prevalence studies from the United States (Baio et al., 2018), Canada (Ofner et al., 2018) and Australia (May et al., 2016.). Based

4 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020 on this prevalence rate and a population of 24.6 million, this would mean that there are approximately 351 000 people in Australia living on the autism spectrum.

While the current prevalence rate is higher than has been suggested previously (e.g., Lord et al., 2020), it does not necessarily mean that the rate of autism in the population is actually increasing (Fombomme, 2018; Lord et al., 2020; Meyers et al., 2019). Rather, much of the apparent increase in prevalence can be attributed to increased awareness of autism in the community, more accurate diagnostic and screening practices, and the broadening of the concept and diagnosis of autism (Fombonne, 2020; Meyers et al., 2019). Further, milder cases of autism spectrum disorder are now more understood, recognised, and diagnosed (e.g., Fombonne, 2020). In the past, these milder cases were not typically recognised.

An increased awareness of autism in the community, along with a greater understanding of the milder forms of autism, means that there are more people requiring access to assessment and intervention services. However, limited service availability, the expense associated with assessment, and long waitlists mean that there are often significant delays in individuals being able to access a diagnostic assessment (e.g., Bent et al., 2015; Gibbs et al., 2019). In turn, this leads to delays in accessing intervention, education, and funding supports (e.g., Zwaigenbaum et al., 2015). Delays in access to intervention has been associated with poorer outcomes for people on the autism spectrum (e.g., Clark et al., 2018), which are likely to be particularly pronounced in regional/ remote areas and for adults.

RECOMMENDATIONS  Increase provisions of assessment (and intervention) services. Particularly in regional and remote areas, where the use of technology to provide/access services via telehealth could help to address some of the issues for people living outside of the capital cities.

 Increase access to assessment services for adolescents and adults who may not be captured in current prevalence data.

 Increase financial assistance for individuals and families accessing assessment services. There are currently no Medicare rebates for children 13 years and over, or adults, the NDIS does not fund diagnostic assessments and there are very few public services for individuals over 6 years of age. Therefore, the only option available to many people seeking diagnostic assessment for possible autism spectrum disorder is a private, fee paying service. This is financially out of reach for many people, meaning that they may miss out on accessing intervention and support because of their difficulties obtaining a diagnostic assessment. Options include increasing the Medicare rebate, extending the rebate beyond 13 years of age and additional government funding for assessment services.

5 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

c. Misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services;

Current situation and related issues Autism is diagnosed more frequently in males than females (Tillmann et al., 2018). Current research suggests that the ratio of autistic boys and men, to autistic girls and women is around 3:1 (Loomes et al., 2017; Gibbs et al., 2019). Evidence from population studies indicate that females may also be diagnosed later than males, with a mean age of diagnosis of between 9 years to early adolescence compared to early childhood in males (Rutherford et al., 2016; Begeer et al., 2013, Halladay et al., 2015).

The existing gender gap may be related to a number of factors including: • Different ways in which autistic traits present in females compared to males; • Stereotypes about autism traits based on male presentation; • Lack of clinician experience with autistic females; • Possible gender biases in the description of autism in the Diagnostic and Statistical Manual, Fifth Edition (DSM-5); • Autism assessment tools have primarily been developed based on how autism has presented in males (Hiller, Young, & Weber, 2014; Beggiato et al., 2017; Ormond, Brownlow, Garnett, Rynkiewicz, & Attwood, 2017).

In addition, the diagnosis of females may be more difficult due to the camouflaging, or masking of symptoms (Wilson et al., 2016; Tillmann et al., 2018). Masking involves the individual adopting a “mask” or putting on a certain persona, which “hides”/camouflages their difficulties. This can have a significant negative impact for the person involved, and it is associated with increased anxiety and poorer mental health (Bargiela, Steward, & Mandy, 2016). It is also likely to contribute to delays in diagnosis, as the difficulties for the individual are less obvious and harder to assess. In turn, this can lead to delays in accessing intervention and receiving the appropriate supports.

Recent research has hypothesised that the gender differences in autism prevalence may also be due to a distinct female phenotype for autism that is not well understood (Ramsey et al., 2018; Haney, 2016; Lai et al., 2015; Rynkiewicz & Lucka, 2018). While there are many advocates and practitioners who believe there is a distinct female presentation based on their personal experience, the research in this area is still in its infancy. There is currently no definitive description of the female phenotype and research into gender differences is contradictory. This could be due to differences in the measures used to assess variables, differences between reporters (clinician, parent or self-report), the small sample size of females represented in the literature (thus resulting in small effect sizes), the heterogeneous nature of autism and the variety of age ranges used.

Nevertheless, despite the limitations in the current research, some possible differences in the presentation of autism in females are emerging. While the core characteristics of autism (i.e., social/social communication difficulties and the presence of restricted/repetitive behaviours), are the same for both males and

6 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020 females, there is increasing evidence that the behavioural characteristics (i.e., the way in which they present) differs. For instance:

 Teachers typically report fewer overall concerns for girls than boys (e.g., in the areas of externalising behaviours and social skills).  Girls may be better at using non-verbal gestures and be better able to integrate non-verbal and verbal behaviours.  Females may be better at maintaining reciprocal conversations compared to males.  Girls may initiate friendships more frequently than boys, although they often have difficulties maintaining their friendships.  Females have an increased tendency to imitate others (i.e., copy, mimic, or mask) in social situations.  Girls may appear as extremely shy.  Girls may present as being extremely interested in socialising, but not know how to socialise and interact appropriately.  Females may be very attached to one or two friends and try to control social play, or they may “float” between groups.  Females may present with less restricted and repetitive behaviour than males.  The interests and obsessions that girls have tend to be more “typical” and age appropriate than those of boys. (e.g, Antezana et al., 2019; Hiller et al., 2014; Mandy et al., 2012).

RECOMMENDATIONS:

 Fund further research into the characteristics of autistic girls. Any research which informs our understanding of any possible distinctive characteristics of autistic girls could lead to major advancements in the diagnosis of, and therapy for, females with autism.

 Specific training for clinicians on gender differences and presentation. Providing additional training for clinicians around possible differences in presentation between males and females is likely to be beneficial in reducing gender bias, increasing accurate and timely identification of females on the autism spectrum, and improving access to services for females.

 Increase community awareness about the differences in the way that autism presents in males and females. This could assist in timely identification of girls on the autism spectrum and help to ensure that they are referred onto appropriate assessment services.

d. International best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity;

Current situation and related issues 7 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

Current best practice in autism diagnosis is a clinical diagnosis made by a skilled professional in accordance with the Diagnostic and Statistical Manual for Mental Disorders – 5th Edition (APA, 2013) or the International Classification of Disease – 11th Edition (ICD 11, 2018). A comprehensive assessment includes a medical review, observation and parent interview, as well as a full developmental history.

As previously outlined, there are a number of issues in accessing assessments in Australia, including lack of appropriately trained professionals, long waitlists for publicly funded assessment services and high costs for private assessment services. These issues are further exacerbated for families in regional and remote areas, and for adults seeking assessments.

In Australia, an autism diagnosis is essential if you want to access NDIS funding. An inaccurate diagnosis can mean that a child does not receive appropriate early intervention therapies (Prior et al., 2012), with considerable evidence pointing to the importance of early interventions in improving outcomes for autistic children (Magiati et al., 2012; Reichow et al., 2012).

Most research into early intervention/supports has been conducted with autistic children who do not have an intellectual disability and follow up is generally limited to a maximum of 2 years post intervention. Nevertheless, a review by Roberts & Williams (2016) resulted in the following general guidelines for early intervention:

 Thorough preparation before commencement including a comprehensive assessment of strengths and weaknesses and consideration of any co-morbid conditions  Commence as soon as possible after diagnosis, ideally between 2 to 4 years of age  Development of an individual plan with input from all therapists working with the child and parents  At least 20 hours per week (including all types of therapy, education and home- based intervention)  Content needs to be autism specific and target areas such as early social development, communication, daily living skills, play and sensory issues  Delivered in various settings including support interaction with typically developing peers  Use of supportive teaching methods such as modelling, prompting, praise, shaping  Functional approach to behaviours that challenge incorporating principles of positive behavioural support; and  Appropriately trained staff and regular evaluation of outcomes

8 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

Older children and young adults with autism also benefit from interventions and supports at later ages, with a number of programs and approaches available that focus on the core social communication difficulties of autism, for example, social skills training programs, augmentative communication systems, and interventions that target co-occurring emotional and behavioural problems. Many of these approaches have been shown to have benefits and they are increasingly being offered in school environments which may help with generalisation of skills (Kasari et al. 2016).

The majority of research into autism intervention to date has focused on children. There are few studies to guide intervention options in adulthood. A recent review identified only 41 studies of interventions targeting social functioning in adults over a 37-year period (Pallathra et al. 2019). At the present time, there are some interventions aimed at increasing employment, improving social skills and reducing anxiety, however further research is need in this area (Shattuck et al. 2011; White et al. 2018).

It is important to note that there is a growing consensus amongst autistic people, their families and researchers, that these interventions should be aimed at improving the lives of autistic people, rather than “making them less autistic”.

In our schools, learning environments are tailored to the needs of our students on the autism spectrum. Classes are small with a high teacher to student ratio and a teacher’s aide appointed to each class. Our goal is to help students develop the skills to become as independent as possible and to enable them to succeed in the wider community.

The Aspect's Comprehensive Approach is a comprehensive organisation-wide framework that recognises the importance of positive behaviour support for students through environmental accommodations, structured supports, transition planning, transdisciplinary expertise, family involvement and professional learning for staff.

Curriculum-based programs in Aspect schools include considerable detail of any accommodations and adjustments that need to be made in order for students to actively participate in teaching and learning experiences. The accommodations and adjustments are individualised to meet not only the cognitive ability of students, but also to support their autism areas of difference.

Through the years, our schools have been actively involved in research projects with the aim of including positive strategies into our education program.

RECOMMENDATIONS:

 Increase funding for assessment services. To assist in reducing access difficulties and decreasing waitlist times there is a need for increased assessment services, particularly in regional/remote areas, although waiting lists for public services can also be long (i.e., 12+ months) in some metropolitan areas. 9 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

 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 prohibitively high costs.  The use of technology to provide assessment and support services. Technologies such as telehealth could help to address some of the issues around access for people living outside of the capital cities.  Increase access to public assessment services for adolescents and adults. To help ease the financial burden involved in accessing an assessment for those people who are not currently able to access public services or receive a Medicare rebate for an assessment.  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 and consistent manner for all people, irrespective of age or residential location.  Increase financial assistance for individuals and families accessing assessment services. There are currently no Medicare rebates for children 13 years and over, or adults, the NDIS does not fund diagnostic assessments and there are very few public services for individuals over 6 years of age, and the rebate is a fraction of the fees charged by most private practitioners. Therefore, the only option available to many people seeking diagnostic assessment for possible autism spectrum disorder is a private, fee paying service. This is financially out of reach for many people, meaning that they may miss out on accessing intervention and support because of their difficulties obtaining a diagnostic assessment.

e. The demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages;

Current situation and related issues There are currently insufficient services and supports for Autistic people across their life span, particularly at key transition points.

As highlighted in our responses above, in jurisdictions across Australia there are waiting lists and expenses involved in the diagnostic process. In addition, supports for families during this stressful time are variable, with families needing to access multidisciplinary assessments and/or support through the public health system, often facing the longest waits for services. 10 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

While young children can receive NDIS funding, the timeline for this pathway also varies depending on where you live and how much you earn, and in some areas (particularly regional and remote areas) there are very few services delivering high quality evidence-informed programs.

Sometimes people are declined services, even if they have NDIS funding – for example, mental health services may refuse to see an individual with autism if they are also accessing NDIS funded supports (even though the presenting issue is a mental health issue).

In addition to accessing services, there are also a number of barriers for people on the autism spectrum to accessing and being included in their communities. Autism is best represented by the social model of disability. This recognises that whilst autism is a disability, much of what disables people is based in a person’s setting – the environment and the social attitudes and approaches of other people.

For people on the autism spectrum to achieve a good quality of life, meet their potential and be included at home, school, work and in the community - good practice support needs to directly and consistently address both the societal and environmental barriers at a national level.

Any approach to addressing these barriers accurately and authentically needs a direct partnership with Autistic people to meet good practice requirements. Aspect has been offering autism friendly services since 2017 and works with community and government organisations to increase awareness of autism and provide a more inclusive physical and social environment. In recent times, Aspect has worked with Coles supermarket, Gold Coast Airport, Shoes and Sox retail store, Beyond Bank and Taronga Zoo.

Positive Partnerships is part of the Australian Government’s provision of services through the Helping Children with Autism package. It is funded by the Department of Education, Skills and Employment and has been delivered by Aspect since 2008.

Positive Partnerships works together with parents, carers and educators of school- aged children on the autism spectrum to provide current, relevant and evidence- informed information through access to workshops and online resources.

Importantly, it also works closely with state and territory education sector personnel, autism associations and key non-government organisations to ensure all workshops and resources complement existing Government programs and initiatives being implemented. It provides a link between services and reliable information for families regardless of their location or government jurisdictions.

11 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

Since 2008, it has successful facilitated workshops to more than 12,000 educators and 19,000 parents and carers, with more than 90,000 people accessing the online modules.

The initiative has continued to be re-funded on the back of external evaluations in 2011 and 2015, with a further external evaluation in 2019 recommending that the Positive Partnerships initiative be re-funded for a fourth phase.

The evidence gathered over the past 12 years of the Positive Partnership initiative suggests that there remains a strong demand for Commonwealth initiatives of this kind, and that schools and families value the opportunity to access reliable, evidence informed content and resources that reflect the programs and practices of other jurisdictions.

One of the areas of particular interest to individuals on the autism spectrum and their families is employment services, with many governments evaluating capacity building programs on offer for autistic people, and developing long term strategies to assist individuals with finding and keeping a job.

The National Disability Insurance Agency (NDIA) has taken a key step towards achieving social and economic independence for NDIS participants by supporting new opportunities to the employment landscape for participants and their families, focusing on increasing employment opportunities. The NDIS Participant Employment Strategy aims to have 30 per cent of participants of working age in meaningful employment by 30 June 2023. Aspect welcomes this initiative, which is expected to deliver wide benefits for Autistic people seeking and obtaining meaningful employment.

Another issue faced by participants is ongoing NDIS funding challenges. For example the NDIA limits funding to Autistic people who cannot link to a Disability Employment Service (DES) provider or Social Enterprise, however these providers do not understand autism or have skilled workers in the frontline supporting participants to secure employment. In addition, employment pathways are not introduced to Autistic people until they complete school. Ideally these linkages would be introduced within the first stages of secondary schooling, or to older Autistic people who did not receive an early diagnosis and are struggling to find work.

RECOMMENDATIONS  Assessment wait times should be mapped across the country to determine where wait times are longest and ensure equitable access to high quality assessments  Diagnosis pathways for children who show signs of autism should be face- tracked to ensure they receive specialist support as soon as possible  Ensure there is cross government communication and collaboration so there are no gaps in service provision, particularly for those individuals with a range of complex issues requiring support from health, disability and mental health services.

12 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

 Work in partnership with Autistic people to develop national standards for autism friendly environments and services across government, business and community organisations  Continue to fund Federal Government initiatives, such as Positive Partnerships, to ensure parents, carers and educators of school-aged children on the autism spectrum have access to relevant and evidence-informed information, workshops and online resources.  Provide further support to employment planners in governments and businesses to help them better understand autism and access an Autistic individual’s capacity and goals, and how these skills can positively translate into the workplace.  Develop skills development programs that understand and assess an Autistic individual based on their strengths, and motivates them to be successful in navigating and accessing suitable employment opportunities  Ensure that all levels of Government work to create inclusive policies and plans that respect diversity and recognise neurodiversity as a strength and not a deficit.  Ensure that all levels of Government work to understand and address the environmental and social barriers preventing Autistic people from actively participating at a national level.

f. the interaction between services provided by the Commonwealth, state and local governments, including:

i. health and mental health

Autistic people experience mental health problems at higher rates than the general population and have been shown to be almost 8 times more likely to die by suicide compared to non-autistic people (Hirvikoski et al., 2016). In addition, autistic people who experience mental health problems often “fall through the cracks” of the services currently available in Australia. A common problem is that mental health professionals refer on to disability services as they do not feel confident or competent in treating autistic people, and disability services refer back because they do not feel confident or competent in treating people with mental illness. It is critical that individuals on the autism spectrum are able to access mental health services with staff who have an understanding of autism. RECOMMENDATIONS  Provide autism training to frontline workers in mental health

13 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

ii. education

Mainstream schools present unique challenges for a student on the autism spectrum – with large physical settings that can be noisy and chaotic, large class sizes that restrict individualised support, and an increased emphasis on unspoken social rules and academic progress as a student progresses through the upper primary stages of learning and into secondary education.

In addition, the results of the Australian Autism Cooperative Research Centre Educational Needs Analysis Survey (Saggers et al., 2016) indicated that teacher knowledge about autism within a mainstream school is limited, they are unsure how to best support students on the autism spectrum and that there is a lack of suitable resources and relevant professional development.

Parents are also concerned about mainstream schools not being able to address what some have referred to as the ‘hidden curriculum’ ((Ishaq, 2018; Myles & Simpson, 2001; Sulaimani & Gut, 2019), those social and more general life skills, such as self- care, self-regulation and speech and language skills, which are not taught directly but are nevertheless critical to the progress of young autistic people who may not acquire them in the usual ways. Some parents opt for a special school placement for their child either in the belief that access to high-level expertise on autism will ensure that staff will better cater for their child’s individual needs, or because they have already tried a mainstream placement and felt that it had failed (Brede et al., 2017).

Aspect is committed to assisting students make the transition from an autism-specific school to a mainstream school, but we also recognise that many students on the autism spectrum experience challenges in mainstream education environments that can be barriers to accessing the curriculum.

These challenges are often the result of the unique learning styles of students on the autism spectrum and a mainstream schools inability to provide appropriate accommodations and adjustments for these students. This is where the option of autism-specific schools can be beneficial.

Aspect schools work on a ‘transitional model’ that aims to provide students, from primary school through to high school, with the skills they need to move into a mainstream education or other specialist environment. As a registered independent school, we deliver the Australian curriculum while working to each student’s autism- related learning needs, individual strengths, interests and aspirations.

We believe a specialised, comprehensive, multi-faceted intensive approach is required to support the educational needs of students on the autism spectrum. The approach to education for students on the autism spectrum needs to be flexible, align to the student’s specific autistic learning styles and needs, and involve a continuum of special education services that is inclusive of their strengths and abilities.

This continuum includes autism-specific special school placement, small support or satellite classes staffed by autism-specialist teachers in mainstream schools, autism- specific itinerant teacher services to support students who are included in mainstream

14 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020 classes and full mainstream school placement – taking into account the unique needs of each individual student.

In addition, the large numbers of students who annually transition through Aspect educational services and schools, into mainstream schools (as set out in the table above), demonstrates the important role that specialist schools play in preparing and supporting students on the autism spectrum for mainstream educational settings.

RECOMMENDATIONS

 Parents need a range of flexible options and approaches to education available to them to support the specific needs of their child/ren. Those options should include, mainstreams schools with support, specialist schools or a mixture of the above.

iii. employment

Estimates show that only 25-50% of people on the autism spectrum are employed, with representation in the workplace lower in those with co-occurring intellectual disabilities (Henricks, 2010). Unemployment rates for those on the autism spectrum are the higher than other disabilities (Shattuck et al., 2012), and almost six times the rate of people without disability (ABS 2015).

RECOMMENDATIONS

 Ensure that disability employment services staff understand autism and how it can benefit a workplace.  Develop programs for transition aged youth on the autism program  Funding for research that evaluates work placement programs for autistic people is important to help evaluate and improve theses services based on evidence.

iv. justice

There is considerable evidence in the research literature that autistic people are at higher risk of involvement with the criminal justice system and face heightened vulnerability once they enter that system (Rava et al. 2017; Salerno & Schuller, 2019). For example, autistic people will likely face difficulties in interview or interrogation situations due to anxiety, tendency towards compliance and difficulties with information processing. While anxiety arising from changes in routine, unfamiliar social situations or sensory overload may increase stress for autistic individuals in these situations. Communication and social difficulties can also be misinterpreted by police, court personnel or prison staff as evidence of belligerence, deceptive behaviour or lack of remorse, and if an autistic person serves a custodial sentence, they are at a higher

15 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020 risk of exploitation, anxiety, social isolation and bullying than non-autistic inmates (King & Murphy, 2014). A recent study conducted by Aspect’s research centre (currently under review for publication) investigated autistic people’s experiences of interacting with police in Australia. The findings indicated considerable dissatisfaction with the way police handled many of the situations, in particular frequent misunderstandings arising between police and autistic people due to social and communication differences. Aspect recently developed a 30 minute online training module for police (funded by the Federal government via an Information, Linkages and Capacity Building grant) and this has been made available to ACT police, NSW police and Victorian police. We are awaiting feedback as to whether the module will be made available to frontline officers. RECOMMENDATIONS:  All frontline workers, including Police, Ambulance, medical emergency staff, etc should receive training to better understand how autism presents.

h. The adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including:

i. autism understanding within the NDIS,

The NDIS planning process experience varies for Autistic people and their families and carers, with some planners demonstrating a complete lack of understanding of autism and the impact on individuals and their families.

Planners often do not understand the:  key role families play in supporting their child/ren on the autism spectrum to cope with daily life  amount of core supports available required for families to maintain their caregiving roles, and  the need for intensive support for young children to develop early communication and play skills.

This can see children with very similar needs receiving very different levels of support depending on who they see and how well parents can advocate on their behalf.

16 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

There is also an increasing trend for NDIS planners to suggest that Allied Health Assistants replace the expertise of Allied Health Professionals, in providing therapy support. It should be noted at the planning stage that Allied Health Assistance may not be the most appropriate support, depending on the complexity of the situation and the support needs of the individual.

Planners may also deem an individual ineligible for the NDIS simply because they have been diagnosed with Level 1 autism, or they have an autism diagnosis that does not include any levels. It is important to understand that the levels of autism, as outlined by the DSM-5, do not indicate the severity of disability or the impact of an individual’s quality of life. In some cases individuals with a Level 1 diagnosis may have much higher needs around social engagement than an individual with a Level 2 and 3 diagnosis. Planners need to understand the impact of each individual’s autism, rather than rely on the levels outlined in the DSM-5.

In addition, many of the decisions made by NDIS planners also do not support the individual across their lifespan – if they have autism they should be included on the scheme with support increased or reduced at major transition points throughout their life, as required.

Planners are also taking up valuable diagnostic resources by requiring participants to undertake additional diagnostic assessment to confirm an earlier one. Given the demands on gaining an assessment, planners need to be better informed about the requirements of getting a new or updated autism diagnosis.

RECOMMENDATIONS:

 Planners to have specific training in autism and how it may impact on individuals and their families – and not rely on the DSM-5 levels as an accurate assessment tool.

 Planners need to understand the impact of each individual’s autism, rather than rely on the levels outlined in the DSM-5.

 Establish a specialist autism panel to provide support to NDIS planners around particularly challenging and complex situations

 Increase collaboration between approved NDIS providers and NDIS planners. Often planners allocate a set amount of time and dollars to cover the costs of services and support for an individual, without understanding what the true of costs of service and support implementation will be.

17 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

 Planners need a better understanding of the complexity of some individuals and their family situations and the impact of major transitions across an individual’s life

 Eligibility for the NDIS to be based on functional need and take major transition points and environmental challenges into account

ii. the utility of the Early Childhood Early Intervention (ECEI) Pathway for autistic children

The current ECEI Pathway can be challenging for families to understand, with messaging and processes varying across states and territories and over time. The timeliness of initial meetings and the provision of gateway services also seem to be inconsistent.

Families are often confused about the 2 Levels of eligibility (full scheme and EI) and because of this children can drop off the eligibility list when they turn 7, or when families have not completed the required assessment or while they are still on waitlists to get the required information.

There is also confusion caused by the ECEI Partners completing plans and then families are contacted by the Eligibility Team and informed that they have not met access. It can be costly for some families to access a diagnostic assessment and this also prevents the child accessing the full scheme even though their needs are very high, well documented and a diagnosis is highly likely.

We also find that some children are not being diagnosed in a timely way and therefore are not able to benefit from targeted autism-specific services and strategies at a crucial time in their development.

Some families require additional support to access the ECEI Pathway and while there are some supported referral processes these are not clear or well documented – ie a referral form that providers can use is available but not widely shared in one region.

There is also a lack of knowledge about autism in some planning teams and it does not seem like the best use of expertise is being made. There are few planners who have an allied health background in some teams.

Many families require more support and guidance to access appropriate services, being given a list of providers is not sufficient for some families who are overwhelmed. We continue to see many examples where families who are well resourced and articulate receive larger funding packages with the system disadvantaging the most vulnerable families.

18 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

There has been very little collaboration between ECEI Partners and providers and this would help strengthen local service provision if there was improved networking. The transition from the ECEI Pathway to full scheme is also problematic and children are falling through the gaps.

RECOMMENDATIONS:

 Selection, training and ongoing support of NDIS planners to ensure that there is autism-specific expertise in planning teams  ECEI Partners have the skills and knowledge to provide clear processes for referral, access and transition to the NDIS as well as explain the exit process once a participant is deemed no longer eligible.  Increased networking between local providers, to develop and provide supports for those who have needs but are not eligible.  Consistency of plan size depending on need not on parent’s ability to advocate  Identifying families who need more support to access the scheme and to make decisions about service provision and providing tailored support to meet these needs.

iii. the ability of the NDIS to support autistic people with complex needs, including those transitioning from prison settings, and

The complex needs support pathway in the NDIS can be difficult to access, with only a few people in each jurisdiction who know how to do this well.

The complex needs pathway is generally inconsistent and constantly changing, with some regions providing clear processes for accessing different levels of support, while others provide no clarity at all, and the communication of new or changed processes are often unclear or non-existent.

Providers and participants need to feel reassured that there will be support when the complexity of their situation warrants a coordinated and/or emergency response such as relinquishment, hospitalisation or jail.

Aspect has had limited experience at the interface with the justice system, but it has been difficult to find adequate support when participants need a very high level of support to stay out of juvenile justice placements.

We are concerned about the impact of placement in these systems if the needs of individual have not been clearly identified – which could worsening an already difficult situation.

19 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

RECOMMENDATIONS:

 That the NDIS develop clear communications regarding how to access and engage with its complex needs teams.  That monitoring is undertaken to better understand the time taken to get support through this pathway and to identify roadblocks.  Understanding that providers may need to pass on cases when they become highly complex as they may not have suitably qualified staff.  Parts of the pathway needs extremely specialist practitioners who can work with more mainstream providers in a collaborative way  Need to have backstop services who are adequately resourced to provide emergency response particularly in more regional areas.  The development of an interface with justice/juvenile justice and the NDIS to identify and map clear processes for how and when providers can/should become involved

iv. the adequacy and appropriateness of supports to empower autistic people to participate in the NDIS planning process, and exercise self- determination through choice and control over their support services;

Many NDIS planners do not have the skills, experience and support to successfully engage with Autistic participants with high needs or different methods of communication.

In addition it is not always appropriate for some participants to directly engage in the NDIS planning process as it can be overwhelming, with some participants unable to confidently advocate on their own behalf. Some participants require support to be able to exercise self-determination, with providers regularly asked to interface with the NDIS on their client’s behalf.

For NDIS planning to be effective more consideration needs to be given to the physical environment in which the planning takes place. These places need to be safe, easily accessible and designed to meet the needs of all participants – including those on the autism spectrum. As already noted above many Government organisations and buildings are not autism friendly environments, and planners have limited understanding of autism.

Planning processes need to be developed that ensure there is adequate time, flexibility and the ability to share power in the planning process.

It is difficult for people on the autism spectrum to access choice and control when making a simple changes to their plan, such as moving from portal to self-managed funding – is difficult to understand and execute.

20 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020

There also needs to be safe-guards in place to ensure that participants choosing non-registered providers are aware that the provider is not monitored through audit processes.

RECOMMENDATIONS:

 Planners need skills in Augmentative and Alternative Communication (AAC) and the ability to engage with and utilise different communication methods to provide additional choice and control. It may be appropriate for planners with these skills to be available to all NDIS/LAC/ECEI planner teams – particularly in regional areas.  The NDIS should conduct a review of the physical environments in which the planning process takes place to ensure that it is autism friendly and allows more flexibility in developing person-centred plans.  The planning process needs to have appropriate safe guards in place to allow for additional people to be involved in the planning process of an individual, including advocates, service providers and other participants.  Allow participants to make changes to their plans during the course of their plan with ease.

j. The adequacy of funding for research into autism;

Current situation and related issues A recent study examining the distribution of autism research funding in Australia (den Houting & Pellicano, 2019) found that in the 2008–2012 period, the bulk of funding was allocated to biological research, with minimal or no funding allocated to topics such as services and lifespan issues.

The pattern of autism research funding in the 2013–2017 period showed a considerably more even distribution of funding, although most of the variation in the two time periods was directly attributable to the contribution of the Autism CRC which has a markedly different investment portfolio that other funding bodies such as National Health and Medical Research Council (NHMRC) and the Australian Research Council (ARC) as it prioritises collaborative research across the lifespan rather than health and medical research.

It is concerning to service providers such as Aspect that once the Autism CRC funding ends that research into services, supports and interventions that have practical and meaningful benefits to autistic people will once again be minimised. Previous research in the UK and US (Autistica 2016; Frazier et al. 2018; Pellicano et al. 2014) has

21 Autism Spectrum Australia (Aspect) – submission to the Senate Select Committee into Autism July 2020 consistently found that autistic people themselves prioritize research topics that are likely to have an immediate, real-world impact on their lives.

Aspect’s practitioners are often attempting to support autistic people in areas that are yet to have a clear evidence base to guide practice. For these reasons, Aspect currently invests approximately 1 million dollars of its own funds into conducting collaborative research that translates into on the ground practice that guides our service divisions.

RECOMMENDATIONS:  Increase funding for research that contributes to the development of evidence based practices in practical areas such as education, everyday living skills, employment, and mental health support be increased.

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