To the Australian Government Select Committee on Autism
We thank you for this opportunity to make a submission and contribute to seeking productive and meaningful ways to improve services and support for autistic people. The focus of our submission is with regards to experiences and outcomes in tertiary education.
Preparation of this submission This submission comes from a Mentoring Autism Community of Practice that is auspiced and supported by the National Disability Coordination Officer Program. The Community of Practice was established late 2019 and has drawn strong interest from Universities and TAFE providers across Australia.
Autism and Tertiary Education
As the number of people diagnosed with Autism Spectrum Disorder (ASD) continues to grow in Australia, making it the largest primary category in the NDIS1, so too do participation rates in tertiary education. Evidence from Australia and overseas indicates that there are increasing numbers of students with Autism Spectrum Disorder (ASD) in the higher education sector.2 However, despite this increase in enrolments many students are likely to either fall short of their potential or not achieve success in their academic pursuits.3 ABS data indicates that people with ASD are less likely than others to complete an educational qualification beyond school. Only 8.1% have a bachelor degree or higher, compared with 16.1% of those with a disability and 31.2% of those without disability.4 Up to 25% of students with ASD withdraw from higher education before completion.5 They are also less likely to hold an Advanced Diploma, Diploma or Certificate III or IV compared to people with disability and people who do not have a disability.6
Unfortunately, these lower attainment rates are even more concerning given the characteristic autistic tendency for hyper focus on areas of specific interests, attention to detail, and the higher prevalence of a range of outstanding cognitive skills and talents within the ASD population compared to the general neuro typical population. 7 Therefore, not only may there be individuals missing out on their potential, our academic institutions are losing such minds from our tertiary systems, and Australia may also be missing out the opportunity to advance many fields of enquiry and endeavours.
Students with ASD can face a multitude of challenges in tertiary learning environments such as: general transitioning; understanding and using communication channels; navigating the built environment; adjusting to different teaching formats; adopting helpful study and organisational
1 NDIS, Archived Quarterly Reports 2019-20. Accessed at https://www.ndis.gov.au/about us/publications/quarterly-reports/archived-quarterly-reports-2019-20#second-quarter-2019-20-q2 2 Owen,C, McCann D., Rayner, C., Devereaux, C., Sheehan, F., & L Quarmby (2016) Supporting Students with
Autism Spectrum Disorder in Higher Education. Accessed at https://www.ncsehe.edu.au/wp-
content/uploads/2016/03/Supporting-Students-with-Autism-Spectrum-Disorder-in-Higher-Education.pdf 3 Ibid. 4 Australian Bureau of Statistics (ABS), Autism in Australia. Accessed at https://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features102018 5 Autism Spectrum Australia (2012) We Belong: Investigating the experiences, aspirations and needs of adults with Asperger’s disorder and high functioning autism. 6 ABS (n4) 7 Meilleur, A-A, Jelenic, P,. & L Mottron (2015) Prevalence of Clinically and Empirically Defined Talents and Strengths in Autism, Journal of Autism Development Disorders, 45(5).
techniques; limited access to social supports; and reaching out to available services. 8 Additionally, ASD characteristics can lead to more general difficulties in being an independent student such as managing everyday routines, coping with anxiety and social engagement.
Research indicates that adults on the autism spectrum are also significantly disadvantaged in their quality of life, employment outcomes, social relationships, physical and mental health, and often lack the supports they need to successfully integrate into the wider society. 9 Additionally, research in the United Kingdom suggests that the poorer social outcomes for adults with ASD may lead greater levels of depression compared to the general population. Sadly, this study found that suicidal ideation was nine times greater for adults on the spectrum that that of the general population, and they were also more likely to attempt or commit suicide.10
All education providers are required to apply adjustments in line with the federal disability discrimination legislation (Disability Discrimination Act, 1992 and Disability Standards for Education 2005). However, due to factors outlined already in this submission, the academic needs of students with ASD have found to be often complex, highly idiosyncratic and can be beyond the scope of the usual supports and adjustments provided to students with disability by tertiary education providers. 11
Evidence from other practices around Australia and internationally indicate that peer mentor programs are one of the most effective ways to support students with ASD with some of the challenges they face, such as planning and organising their studies, negotiating extensions, navigating on-line learning platforms, and settling into general student life.12
For example, one recent Australian study has highlighted the difficulties for students with ASD transitioning into tertiary studies including anxieties about disclosing their disability, and that they often wait until a crisis arises before seeking assistance.13 Having a strong and visible peer mentoring program within their institution provides proactive individualised support, and can assist students overcome some of the fear and anxiety they may have about disclosure and seeking the general student supports they need.
A mentor is often equivalent to an interpreter for a deaf student in that they help the student leverage their academic strengths to navigate their tertiary education more successfully and in doing so set them up for making a valuable contribution to society in their adult lives.
Therefore, a number of tertiary education providers have invested in specialist programs to better demonstrate their commitment to support the needs of their students with ASD and provide equitable and inclusive access to their programs, services, facilities and events.
These include peer mentoring programs including those at Curtin University, ANU, University of Newcastle, University of Tasmania, and peer facilitated skills programs at Queensland University of Technology and the University of Southern Queensland. Some of these programs have utilized the
8 Owen et al., (n2) 9 Howlin, P., & P Moss (2012) Adults with Autism Spectrum Disorders, The Canadian Journal of Psychiatry, 57(5). 10 Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., & S. Baron-Cohen. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinic cohort study, Lancet Psychiartry,1. 11 Owen et al., (n2) 12 Owen et al., (n2) 13 Nuske, A., Rillotta, F., Bellon, M., & Richdale, A. (2019). Transition to higher education for students with autism: A systematic literature review. Journal of Diversity in Higher Education. 12(3).
range of resources developed from Curtin University, and provided by the Autism CRC to support universities across Australia to implement their own peer mentoring program. 14
Additionally, membership and interest in the Mentoring Autism Community of Practice indicates a strong interest in establishing such programs from several other universities and TAFEs across Australia.
How successful have we been? Feedback from program coordinators - based on both internal evaluations and grounded observations - indicates that specialist mentoring programs can make a significant positive difference to the education experiences and outcomes of students with ASD. An external evaluation on the Curtin University specialist peer mentoring program in 2017 found preliminary evidence that these programs can improve the wellbeing of students with ASD, and it is important to provide individualised and flexible modes of support that are underpinned by social supports.15 Additionally, the peer mentors, either autistic or neurotypical, have gained valuable leadership and career-related skills, including specialist communications, increased confidence working with people with ASD, advocacy skills, increased awareness of the benefits of diversity, and the skills to enable that diversity.
See Appendix 1 for the list of research investigating and evaluating the Curtin University program that highlights the value of mentoring for both the mentees and the mentors in an Australian context.
Our request Despite their success and effectiveness, members of our Community of Practice who coordinate these programs report high levels of uncertainty in regard to funding. There are no guarantees from one year to the next that programs will continue. This limits the scope for leveraging further off the successes and for future planning.
Autism mentoring programs can be partially funded by the Australian Government of Education, Skills and Employment’s Higher Education Disability Support Program (DSP) with the remaining funds provided at the universities’ expense and discretion. Unfortunately, these successful mentoring programs are likely to be at greater risk and experience more uncertainty in the foreseeable future due to two factors:
the current financial restraints within the university sector due to the implications of COVID 19 and global forces merging of the performance-based component of the DSP funding model into the Disability Support Fund rolling out over 2020 means funding will be allocated through both claims and formula based models and may mean less overall funding linked to providing student support.
We are therefore seeking consideration of the following three strategies which we believe will help improve the tertiary education participation experiences and outcomes of students with ASD.
14 Autism CRC Knowledge Centre, Peer mentoring program for autistic university students accessed at https://www.autismcrc.com.au/knowledge-centre/reports/peer-mentoring-program-autistic-university students 15 Siew, CT., Mazzucchelli, T.G., Rooney, R., & Girdler, S. (2017) A specialist peer mentoring program for university students on the autism spectrum: A pilot study. Accessed at https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0180854
Capture data on the prevalence of students with ASD in tertiary education
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Currently the Australian Government Department of Education, Skills and Employment data collections mechanism - HEIMS – includes no designated code for students on the autism spectrum. Instead this data is incorporated under the neurological condition category. However, recording and tracking the numbers of student with ASD will provide a more accurate picture of this possibly growing cohort, and will allow us to analyse trends, and respond more systematically and strategically. Additionally, in alignment with commonly held premise that we value what we measure and in turn we measure what we value. Hence, we believe it is time to show that we value the participation and achievements of students with ASD in tertiary education through more accurate data collection.
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Undertake a comprehensive review of the existing mentoring programs There can be considerable variance between the different specialist mentoring programs provided in universities across Australia. While we believe that there is great value in having a range of different modes and approaches, the sector as a whole could benefit from a review of the existing programs. This could involve an analysis of the differences, comparisons, and the advantages of each of the different approaches, and establish benchmarks for good practice.
This could enable not only tertiary providers to adopt suitable strategies for their context but more importantly it could help individuals with ASD and their families make more informed choices about university selection.
- Establish more secure funding Based on the findings of the comprehensive review of programs (above point 2) the Australian Government establishes a funding stream for tertiary institutions to provide good practice specialist support programs – such as peer mentoring –for students with ASD.
In conclusion We thank you for your consideration of this submission. Members of our Community of Practice would welcome the opportunity to provide you with further information should you require this.
Debbie Hindle
University of Tasmania
On behalf of
The Tertiary Autism Mentoring Community of Practice
Appendix 1
Research Articles on Curtin Specialist Mentoring Program
Hamilton, J. (2015). Training and Experience of Mentors working with Tertiary Students with an
Autism Spectrum Disorder. Unpublished Master of Psychology (Clinical) Dissertation: Curtin
University, Perth, Western Australia.
Hamilton, J., Stevens, G. & Girdler, S. (2016). Becoming a Mentor: The Impact of Training and the Experience of Mentoring University Students on the Autism Spectrum. PLoS One, 11(4):e0153204. doi:10.1371/journal.pone.0153204
McDonald, J., Kidd, T., Ting Siew, C., Hamilton, J., Unwin, L., Thompson, C., Evans, K., Black, M., D’Abrera, J. & Girdler, S. (2016a) Specialist Peer Mentoring Module: mentee information booklet. Brisbane, Queensland: Cooperative Research Centre for Living with Autism.
McDonald, J., Kidd, T., Ting Siew, C., Hamilton, J., Unwin, L., Thompson, C., Evans, K., Black, M., D’Abrera, J. & Girdler, S. (2016b) Specialist Peer Mentoring Module: program coordinator manual. Brisbane, Queensland: Cooperative Research Centre for Living with Autism.
McDonald, J., Kidd, T., Ting Siew, C., Hamilton, J., Unwin, L., Thompson, C., Evans, K., Black, M., D’Abrera, J. & Girdler, S. (2016c) Specialist Peer Mentoring Module: specialist mentor toolkit. Brisbane, Queensland: Cooperative Research Centre for Living with Autism.
Siew, C. (2014). An Evaluation of the Curtin Specialist Mentoring Program for University Students on
the Autism Spectrum. Unpublished Master of Psychology (Clinical) Dissertation: Curtin University,
Perth, Western Australia.
Siew C.T., Mazzucchelli T.G., Rooney R. & Girdler S. (2017) A specialist peer mentoring program for university students on the autism spectrum: A pilot study. PLoS ONE 12(7):e0180854. https://doi.org/10.1371/journal.pone.0180854
Thompson C. , Bölte S., Falkmer T. & Girdler S. (2019) Viewpoints on how students with autism can best navigate university, Scandinavian Journal of Occupational Therapy, 26(4), 294-305, DOI: 10.1080/11038128.2018.1495761
Thompson C., Falkmer T., Evans K., Bölte S., & Girdler S. (2018) A realist evaluation of peer mentoring support for university students with autism. British Journal of Special Education. 45 (4)
412-434, DOI: 10.1111/1467-8578.12241
Thompson C., McDonald J., Kidd T., Falkmer T., Bölte S., & Girdler S. (2020) “I don’t want to be a patient”: Peer mentoring partnership fosters communication for autistic university students, Scandinavian Journal of Occupational Therapy, , 1(16) , DOI: 10.1080/11038128.2020.1738545