Disclaimer

2. Disclaimer • The autistic spectrum covers such a range of traits at differing levels of severity that everyone needs to be treated as an individual. There are no generic, one-size-fits-all answers. • Unashamed self-promotion of the Asia Pacific Autism Conference 8-10 August 2013

3. The Changing World of Autism • The Neurodiversity Movement • Social Media • Increasing Prevalence • Changing Diagnostic Criteria • The Changing World Around Us • State Wide Autism Project

4. The Neurodiversity Movement I am Autism

5. The Neurodiversity Movement • Neurological differences recognised and respected as a “social category” (eg, gender, ethnicity) • Not just a concept but a social movement • Proponents and activists reject the idea of cure and promote the acceptance and celebration of difference and diversity • “Person-first” terminology and new language (eg, NT) • Modifications and adaptations – person or society? • Neurodiversity = opinion diversity • United Nations CRPD ratified by Australia in 2008

6. The Neurodiversity Movement • “It is not possible to separate the autism from the person. Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (non-autistic) child instead.’ … your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.” – Jim Sinclair “Don’t Mourn for Us” 1993 • Jon Mitchell is a 53 year old male with a high-functioning type of Autism blogs on two websites - “We don’t need no stinkin’ diversity.”, “I am pro-cure, anti-neurodiversity, anti-special ed, anti-ABA. I have something to p**s off everybody!”

7. The Neurodiversity Movement • “In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.” ― Temple Grandin, Thinking in Pictures, Expanded Edition: My Life with Autism

8. Social Media • The Web “is a prosthetic device for people who can’t socialize without it.” (Judy Singer) • “Social Media refers to websites like Facebook, Twitter, Linked In, YouTube & blogs where you can have public, online conversations with people. Whilst these types of websites are all relatively new try not to get too overwhelmed, people have always been ‘social’ and had conversations.” – Bluewire Media • The geeks shall inherit the earth • Mark Zuckerberg? • Support for safe use Arthur Fleischmann Co-author of the bestselling Carly's Voice: Breaking Through Autism

9. Increasing Prevalence - International • More affected or more detected? • Prevalence of Autism in South Korea (Young Shin Kim, et al, 2011) has estimated that ASD affects an estimated 2.64%, or 1 in 38 school-age children. This study reported on a population of 55,000 children aged 7 to 12 years. Sex specific prevalence rates were 3.74% for boys and 1.47% for girls. • March 2012 Center for Disease Prevention and Control in the US released data from the Autism and Developmental Disability Monitoring (ADDM) Network - Reported as affecting 1 in 88 children, 1 in 54 boys, up 78% from 2002 and 23% from 2006 • ASD is more common that Cerebral Palsy, Cystic Fibrosis, Down syndrome, vision impairment and hearing loss combined (Wray, 2007)

10. Increasing Prevalence - National • The Survey of Disability Ageing and Carers (SDAC), 2009, “showed an estimated 64,600 Australians had autism. This is an increase of 34,200 from the 2003 SDAC, or more than double the prevalence identified in 2003 • The Prevalence of Autism in Australia report prepared by the Australian Advisory Board on Autism Spectrum Disorders, 2007, indicated a national prevalence rate of 1 in 160 for children aged 6 – 12 years at that time • Buckley (2009) and Wray (2011) FaHCSIA/Centrelink data shows steady annual growth in ASD diagnoses from 2004 to 2009 and that National ASD prevalence (for school-aged children) exceeded 1 in 100 (or 1%) in 2009.

11. Increasing Prevalence - SA • Autism SA Client registration data reveals prevalence rates in South Australia for children aged less than 18 years to be 1.22% or 1 in 82 people. Registration data by individual age and sex reveal particularly high ASD prevalence rates for school aged males. For example, 1 in 29 ten year old boys in South Australia is a registered client of Autism SA. Given current trends in the growth of client numbers, we can assume a 12-15% increase on an annual basis. The increase in new diagnoses at a State level has occurred across all age groups and all diagnostic groups. There are significant planning and resource issues to consider with an ageing population and increasing demand will be experienced for support within the education system. To date, despite injections of Commonwealth funding, State funding and significant philanthropic and fee-for-service strategies, demand for services has exceeded supply

15. Changing Diagnostic Criteria Australian Doctor 21 September 2012

16. Changing Diagnostic Criteria • Current Diagnosis • ICD:10 & DSM:IV - based on underlying ‘triad’ of difficulties: • social & emotional understanding • communication • flexibility in thinking & behaviour • ASD part of PDD • autistic disorder (classic autism) • Asperger syndrome • atypical autism/ PDD-NOS • Rett's Disorder • Childhood Disintegrative Disorder • DSM-V (due May 2013) & ICD-11 (due 2015)

17. Changing Diagnostic Criteria • DSM V and ICD-11 • PDD • all to be ASD • Rett’s syndrome & Heller’s syndrome (CDD) medical • ASD • subcategories gone (i.e. no Asperger syndrome, no PDD-NOS) • 2 dimensions not triad (social & communication combined) • both dimensions compulsory for ASD diagnosis • DSM V also requires that a severity rating be applied for each individual diagnosed with an autism spectrum disorder • Joker in the Pack – Social Communication Disorder

18. Changing Diagnostic Criteria • Mandy et al (2011) - only 2/66 children with PDD-NOS would score as having ASD in DSM-V • Volkmar (2012) - 56% of those diagnosed with an ASD under DSM-IV-TR would not meet criteria under the proposed DSM-V • Worley & Matson (2012) - 33% of those who met criteria under DSM-IV-TR did not meet criteria under DSM-V • Gibbs (2011) 2011 - from sample of 132 children and adolescents, 26 of the 111 participants who received a diagnosis under DSM-IV-TR would not meet criteria as proposed in DSM-V i.e. 23% • American Psychiatric Association - field testing “does not indicate that there will be any change in the number of patients receiving care for autism spectrum disorders in treatment centers”

19. The Changing World Around Us • United Nations CRPD ratified by Australia in 2008 • The National Disability Strategy 2010-20 • National Standards for Disability Services under review • PC Report “Disability Care and Support” – August 2011 • SIU “Strong Voices” Report - November 2011 • July 2012, announced as one of the launch sites 0-14 year olds • Review of Disability Education Standards – August 2012 • New proposed Child Development Legislation for SA – September 2012

20. The Changing World Around Us • NDIS will be fully operational 2018/19 • Increased competition • Less philanthropic sources • Workforce and skill shortages • Rights-based approach - voice, choice and control • Life-long entitlement = greater funding certainty • national consistency in disability services system • Greater regulation, transparency and accountability • Role of government in service provision? • Significant technological and communication breakthroughs • Changing business standards and systems • Benchmarking and public reporting – demonstrating “impact”

21. The State Wide Autism Project - SWAP • Funding via South Australian Department for Communities and Social Inclusion (DCSI) • 2 phases • 1. Report on current state of the service system • 2. Develop a service system improvement framework • The framework will be structured to reflect key phases of the ‘ASD’ journey • diagnosis and assessment, early intervention, education, employment/day options, long-term care and care in advanced age.

22. The State Wide Autism Project - SWAP • The intention of the framework is to drive improvements in the service system to achieve optimal outcomes for all South Australians with ASD through the provision of equitable, timely and effective services and support. • It is also an aim to reduce variations in support by outlining the services that all people with ASD should expect to receive from the SA health, disability and education sectors, across the continuum of the condition. • Implementation strategies will be embedded that reflect current best practice.

23. The State Wide Autism Project - SWAP • Independent Stakeholder survey undertaken • Aims and objectives: • To identify barriers and facilitators to optimising the experiences of people with ASD • To inform development of the SA service system improvement framework for ASD • Determine consumer and professional satisfaction with specific Autism SA services • Identify positive and negative aspects of the Autism SA service delivery model • Identify gaps in the current SA ASD service system delivery model • Identify the features of an ‘ideal’ model of ASD service delivery

24. Consumers’ satisfaction with Autism SA services: overall current (n=139)

25. I can access the telephone hotline and the annual conference however training and development is held at times that do not support country people. There is virtually very little school support for students with ASD in rural and regional areas (I am lucky if my son gets 20 mins /year). There is no T and D held in country areas and often not on a weekend if at all. Country children with ASD are often disregarded by Autism SA in terms of services and sometimes what is offered is cost prohibitive for many families who are already financially struggling. There is no respite service in the country regions, it stops at Munno Para in the north and I believe Noarlunga in the south. Again both in Adelaide. (P146, Mother of a 9 yo son with Autistic Disorder, on-line survey)

26. Professionals’ satisfaction with Autism SA services: overall current (n=55)

27. I rated them unsatisfactory, not because the actual service is unsatisfactory, but because only a limited percentage of children are lucky enough to be able to access them. With waiting lists everywhere getting longer and longer, I would like to see a more active attempt to up-skill more eligible service providers. In particular with children with ASD, until the child has a diagnosis, parents can't get any definitive help, and it worries me that parents are struggling alone with very difficult behaviours often resulting in the whole family being housebound. (P 72 GP, Government service provider, on-line response)

28. Service Gaps as Reported by Consumers • Case managers • School years • Rural and remote areas • CALD groups • Home schooled children • High quality respite • Transition from school to post-school options • Transition to adult accommodation • Long term accommodation • Aged care

29. Service Gaps as Reported by Professionals • Waiting lists for diagnosis • Whole family support • Case Managers • School programs (mainstream) • Social skills programs • Capacity to deliver services • Inadequate funding for students • Autism specific post-school options • High quality respite • Long term accommodation for adults • Care in ageing • Rural and remote areas • Activities that promote meaningful participation across the lifespan • Mental health

30. The State Wide Autism Project - SWAP • Next Steps • Finalise Phase 1 Report in consultation with Steering Committee • Phase 2 • Identify opportunities for service system improvement options, which ensures clearer pathways for accessing services across the lifespan for people with Autism Spectrum Disorders and their families • Ensure that the necessary relationships and agreements are in place to facilitate sustainable service system improvements • Ensure that the necessary systems supports, including mechanisms for data collection, are well defined and that resource implications are clear • Ensure that the service system improvement framework aligns with relevant policy and legislation