Australian context: commentary on transitions to adult care for autistic individuals

Purpose of the commentary

• This article provides a UK-focused discussion translated to the Australian context, commenting on two pieces: McMinn, Schulz, & Ludlow (2019) and Beadle-Brown & Roberts (2019).
• McMinn et al. (2019) described six mothers’ experiences of the transition from youth to adult services for autistic young people in the United Kingdom, noting perceived lack of support and limited services, with peer support among parents identified as beneficial.
• Beadle-Brown & Roberts (2019) offered challenges to the status quo and highlighted the need to listen to family perspectives, while also noting the lack of research on the roles and experiences of parents with transition-age or adult children.
• The present piece comments on both works within Australia to illuminate context-specific issues and opportunities for research, policy, and practice.

Transition to adulthood in the Australian context

• Agreement with Beadle-Brown & Roberts (2019): research on transition-age autistic individuals is limited.

• Historically, Australian services targeted children, with limited autism-specific services for teens and adults.

• National and state reports highlight concerns about services for autistic Australians with and without intellectual disability transitioning out of secondary education.

  • Key sources cited: Autism Spectrum Australia (2013); Cai & Richdale (2016); Parliament of Victoria, Family and Community Development Committee (2017); Strnadova, Cumming, & Danker (2016).

• Quantified concerns reported in Victorian evidence (Parliament of Victoria, 2017):

  • There is evidence that at least $30\%$ of young adults with autism spectrum disorder who do not have an intellectual disability have no employment or support and are essentially at home going nowhere. This highlights gaps in employment and support services post-school. $\text{(pp. 203–204)}$

• Employment and post-school supports in Australia have been a major gap in policy and service delivery:

  • Autism Spectrum Australia (2013) reported about half of Australian parents noting a lack of appropriate employment support and issues with post-school services.

• Parental involvement in transition remains high in Australia: a caregiver example from Cai & Richdale (2016) describes parental planning and daily management of higher education engagement (e.g., reminders, keeping timetables on the fridge).

  • Direct quote from Cai & Richdale (2016) (p. 38): planning and daily routines were used to sustain the child’s higher education participation.

• Transition supports base: the sector has developed tools (not yet proven fully effective) to address gaps, including:

  • BOOST-A (Better Outcomes and Successful Transition for Autism): pilot online transition planning program for adolescents with autism. \text{(Hatfield, Murray, Ciccarelli, Falkmer, & Falkmer, 2017)}
  • Employment Circles of Support (Bytschkow, 2016).

• Victoria-specific context: state-focused planning exists through the Victorian Autism Plan; a broader Victorian Autism Plan is currently in development, aiming to address transition issues.

• The National Disability Insurance Scheme (NDIS): a major national funding reform that provides funding directly to individuals with disabilities (including autism) to cover supports.

  • Rollout was ongoing by end of 2019; research to date has largely focused on children rather than transition-age individuals.
  • There is a concern that some autistic individuals may not be deemed eligible for NDIS funding because autism can fall under varying eligibility criteria (some conditions likely to meet requirements, others where capacity is variable).
  • Given major funding changes nationwide, research examining caregiver and autistic community experiences during the transition era post-NDIS would be valuable to identify challenges and responses.

• Overall themes for Australia: a need for broader transition planning, more autism-specific adult services, better information on available services, and empirical work on caregiver and autistic experiences post-NDIS rollout.

• Service availability in Australia

  • Data indicate autistic individuals are less likely to complete a university degree compared with other groups (Australian Bureau of Statistics, 2015).
  • Higher education institutions provide support services, but many autistic students do not access them until a challenge arises; when they do, it is often due to parental insistence. (Cai & Richdale, 2016).
  • Strnadova, Cumming, & Danker (2016) reported teacher and parent perspectives on transitions for individuals with autism and/or intellectual disability; one parent characterized post-school education service availability as a human rights matter.
  • Employment and workplace supports: Australia has free national Disability Employment Services (DES); however, services are often perceived as tailored to individuals with intellectual disability and not well aligned with autistic needs. DES placement rates for autistic clients are variable and low. (Australian Government Department of Jobs and Small Business, 2017).
  • School Leavers Employment Supports (SLES) exist (e.g., Aspect), but not a national program; the “Autism@Work” movement has advanced in Australia with companies like Specialisterne and DXC Technology offering autism employment programs, but these services cover only a small minority and often exclude individuals with co-occurring intellectual disability.
  • Housing and accommodation challenges for autistic young adults: there are few places available; many autistic young adults continue to live at home with family. (Strnadova et al., 2016; Lawson, Haschek, & Richdale, 2019).

• Personal perspectives and lived experience (Dr Nancy Sadka)

  • Sadka shares a lived pathway through transition and accessing the NDIS, illustrating both systemic barriers and personal strategies for empowerment.
  • A three-building-block framework for supports emerged from Sadka’s narrative:
    1) Acknowledging the person as a rights-bearing individual and implementing these rights throughout life.
    2) Advocacy as the caregiver’s voice: developing interview questionnaires and outcome templates to help the autistic person make choices; the caregiver acts as the voice when needed.
    3) Attitude and sustained effort: the caregiver’s daily stance to support goals and life choices.
  • NDIS as a platform: while the NDIS provides a framework for funding, it also creates a second full-time job for caregivers due to planning, management, and monitoring duties.
  • Timeline example from Sadka’s narrative: seven months from inception to actualisation for funding and planning; the process involves meticulous documentation, rosters, invoices, and ongoing plan reviews. The text emphasizes the ongoing, labor-intensive work required by families to ensure adequate supports and avoid a return to the pre-NDIS status quo.
  • The overarching message: advocates cannot rely solely on service providers; families must maintain active involvement to secure meaningful opportunities for their autistic children.

• Conclusion from the Australian context

  • McMinn et al. (2019) illuminate caregiver experiences during transition, while Beadle-Brown & Roberts (2019) challenge researchers to listen to autistic voices as well.
  • A robust Australian understanding requires ongoing collaboration with families and autistic individuals to identify service barriers and supports, particularly in the wake of the NDIS rollout.
  • The authors argue for more Australia-specific research on transition-age autistic individuals and on caregiver experiences to improve policy, program design, and service delivery.

Acknowledging language and policy notes

• Note 1: Many individuals with autism prefer identity-first language (e.g., autistic); this article adopts that convention. (Kenny et al., 2016)
• Note 2: Much of the cited pre-NDIS research reflects the system prior to major funding reform; post-NDIS research is still developing.
• Note 3: Victorian Autism Plan: https://www.dhhs.vic.gov.au/publications/victorian-autism-plan
• Note 4: National Disability Insurance Scheme (NDIS): https://www.ndis.gov.au/
• Note 5: NDIS eligibility guidelines: https://www.ndis.gov.au/about-us/operational-guideline/access-ndis-disability-requirements
• Note 6: School Leavers Employment Supports (SLES) information: https://www.autismspectrum.org.au/how-can-we-help/getting-a-job/school-leaver-employment-support
• Note 7: Specialisterne Australia autism employment program: http://au.specialisterne.com/
• Note 8: DXC Technology autism employment program: https://www.dxc.technology/au

References (selected)

• Australian Bureau of Statistics. (2015). Survey of disability, ageing and carers Australia.
• Australian Government Department of Jobs and Small Business. (2017). Disability employment services – Outcome rates by disability type.
• Autism Spectrum Australia (Aspect). (2013). We belong too: The experiences, needs and service requirements of adolescents with autism spectrum disorder.
• Cai, R. Y., & Richdale, A. L. (2016). Educational experiences and needs of higher education students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(1), 31–41.
• Hatfield, M., Murray, N., Ciccarelli, M., Falkmer, T., & Falkmer, M. (2017). Pilot of the BOOST-ATM: An online transition planning program for adolescents with autism. Australian Occupational Therapy Journal, 64(6), 448–456.
• Kenny, L., et al. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442–462.
• Lawson, L. P., Haschek, A., & Richdale, A. L. (2019). Study of Australian school leavers with autism (SASLA): Baseline profile 2018. Olga Tennison Autism Research Centre (OTARC), La Trobe University.
• McMinn, L. E., Schulz, J., & Ludlow, A. K. (2019). Mothers’ experiences of the transition of young people with autism spectrum disorder to adult care. Research and Practice in Intellectual and Developmental Disabilities, 6(2), 129–138.
• Parliament of Victoria, Family and Community Development Committee. (2017). Inquiry into services for people with Autism Spectrum Disorder Final Report.
• Strnadova, I., Cumming, T. M., & Danker, J. (2016). Transitions for students with intellectual disability and/or autism spectrum disorder: Carer and teacher perspectives. Australasian Journal of Special Education, 40(2), 141–156.
• Beadle-Brown, J., & Roberts, R. (2019). Challenging the status quo: Commentary on Mothers’ experiences of the transition of young people with autism spectrum disorder to adult care (McMinn, Schulz, & Ludlow, 2019). Research and Practice in Intellectual and Developmental Disabilities, 6(2), 139–146.
• Cai, R. Y., & Richdale, A. L. (2016). Educational experiences and needs of higher education students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(1), 31–41.
• McDonald, M., Davis, K., & Mahar, N. (2016). When funding meets practice: The fate of contemporary therapeutic approaches and self-determination in a consumer-centred disability funding scheme. Journal of Policy and Practice in Intellectual Disabilities, 13(4), 277–286.
• Lawson et al.; Parliament of Victoria; Strnadova et al.”