Research candidate

Timothy Chan

Research topic

The neurodiversity movement: Applicability to autistic individuals with complex communication needs, and impact on Australian autism advocacy

The neurodiversity (ND) framework has been adopted by advocates in diverse fields including research, healthcare and service provision to champion more inclusive policies and practices, in participatory approaches of these vital domains. Autism activists have readily adopted the ND framework in their advocacy work to advocate for increased equality and inclusion for the autistic community.

However, the question remains whether the ND model of neurological differences instead of deficits can be applied to autistic nonspeaking/minimally speaking autistic individuals, or those with complex communication needs (CCN). A polarisation of positions within autism activism is apparent between advocates who affiliate with the Medical Model of disability in proposing interventions for curing autism, against ND activists aligning with the Social Model, who believe that interventions aimed at eradicating autistic traits are harmful. This controversy is fuel by certain autism advocacy groups who claim that the NDM has minimised the high level of essential support for communication and daily living of autistic individuals with CCN, as well as vital medical treatment of comorbid conditions such as epilepsy.

The ideology of and politicisation by the Neurodiversity Movement will be assessed in its applicability to autistic individuals with CCN, to add value to the autism discourse and increase understanding of this marginalised neurominority towards socially just outcomes.

This research project will examine, firstly, how the ND framework can be used to understand and address the needs of autistic individuals with CCN, using their personal narratives and lived experiences of those with independent communicating skills. Secondly, how the ND Movement has exerted impact on the autism discourse and introduced systemic changes in autism advocacy.

Supervisory team

Principal supervisor: Dr Rachel Busbridge
Co-supervisor: Associate Professor Nell Musgrove

Publications

Book chapters and journal articles

Chan, T (2023). “Lock-in, locked down: Lived experience of a non-speaker” in Robinson, S. & Bennett, K. (eds), Research Handbook on Disability Policy, Chap. 18, Edward Elgar Publishing, UK

Heyworth, M.; Chan, T. & Lawson, W. (2022). Perspective: Presuming Autistic Communication Competence and Reframing Facilitated Communication. Frontier in Psychol. 2022 Mar 10:13:864991. doi: 10.3389/fpsyg.2022.864991. eCollection 2022.

Other publications

Autobiography

Chan, T. & Chan, S. (2019), Back from the Brink: Stories of Resilience, Reconciliation and Reconnection. Ingram Sparks, Melbourne.

Public engagement

Presentations

Panelist on the Fall Seminar Series, 2023 session 'Nothing About Us Without Us': Lived experiences of nonspeakers and considerations for music therapy”, run by the New Jersey Music Therapists Association, USA, 20 Oct, 2023

Guest speaker at the World Autism Awareness Day @ Autism CRC Participant Day, Brisbane, 2 April, 2019

Chan, T. “Compensatory skills in the use of AAC for an autistic non-speaker”, Presentation at the International Society for Augmentative and Alternative Communication (ISAAC) Conference, Gold Coast Australia, July, 2018.

Chan, T. “Turning Impediments to Opportunities”, TEDxMelbourne, 3 Dec. 2013.
https://www.tedxmelbourne.com/talks/turning-impediments-into-opportunities

Podcasts

Participated in the Autism Central Podcasts National Autistic Society, UK, May, 2024
https://podcasts.apple.com/us/podcast/autism-central-podcast/id1741524335

Participated in the Autism Stories podcasts, Episode 284, Autism Personal Coach, USA.
autismpersonalcoach.com

Advocacy experiences

- Contribution to Autism Care Plan for Austin Health in professional development for staff in caring for patients with autism Oct. 2019
- Participated at the Review for Program for Students with Disability at Deaf Institute of Education Victoria chaired by Dr. Graeme Innes, August, 2015
- As community representative for the Reference/Advisory Committee comprising members from the Education Dept. allied health professionals and academia on an online resource by Communication Rights Australia, June 2017 - June 2018. Resulting in the “Teachers’ Toolkit” on teaching strategies for students with complex communication needs. https://staging.andmine.com/wp/CommunicationRightsAustralia/dev/
- Ongoing exploration of an area of concern raised by members of Just Learning Inc. regarding the safety issues of vulnerable people including those with little or no speech, with advocacy and networking.
Learn more about End-user Associate Supervision and Industry PhD opportunities at ACU

Involvement in Autism Advocacy Organisations

Amaze

1. Participated in survey formulation/feedback advisory group (with ACU Prof. Sandra Jones, Shadia Hancock, etc. Fiona Sharkie) – Community awareness; Family experiences; Senate inquiry
2. Member of the Amaze Autistic Talents Bank – contributed articles etc.
3. Compiled Amaze World Autism Day video
4. Participation in Amaze Autism Connect video

Australian Autism Research Council (AARC)

1. Member of AARC, co-chaired by Dr. Wenn Lawson and Prof. Andrew Whitehouse (Jan. 2018-Dec. 2019).
2. AARC Focus Group member on Communication 5 Oct. – 14 Oct. 2020

Autism Explained/Autism from the Inside

1. Presentation on Sensory and Processing Differences of Nonspeaking Autism., Autism From the Inside Summit Sept. 2023
2. Panelist on the Panel Discussion on Nonverbal Communication, Autism Explained Summit Sept. 2021. https://www.youtube.com/watch?v=axDvfjWb6yk

Children and Young People with Disability (CYDA)

1. Participation at the UN 13^th Conference of State Parties (COSP13) on the Convention on the Rights of Persons with Disability (CRPD), and as a panel member on the side event, “The mirage of inclusive education in Australia and the roadmap to change” with panel members including advocates, educators, human rights lawyers and young people with disability, jointly organised by CYDA and Queensland Advocacy Initiative, 5 December, 2020
2. Participation in the Co-design Committee on National Youth Disability Summit (Jan. 2020- Oct. 2020)
3. Participation at the Young People’s Roundtable on disability (CYDA) 26 May, 2018
4. Presented at the Senate Inquiry on Current Levels of Access and Attainment for Students with Disability and the Impact Associated with Inadequate Levels of Support, September, 2015
5. Participating in National Youth Disability Summit (29.09 – 3.10.20) including giving a LivedX Talk, October, 2020
6. Submissions to the Disability Royal Commission (DRC) – personal submission; DRC hearing on Covid 19 impacts on disability (part of CYDA submission)
7. Participation in focus groups including Strategic Planning, Disability Standards for Education (DSE), Senate Enquiry on disability and education

I Can Network

- Keynote speaker and panelist (with Dr. Wenn Lawson, Yenn Purkis and Steve Silberman, award winning author of “Neurotribes”) at AWETISM EXPO 22 Nov, 2020
- Compiled video on Autistic Pride (April, 2020)
- Compiled videos on Humans on the Autism Spectrum (April, 2018, 2019, 2020)
- Participation in a video on students on the spectrum directed by Chris Varney, CEO, I Can Network, for the Graduate Certificate [in autism] course at Torrens University, 17 January, 2017.
- Taken part in a video, produced by ABC Lateline, on autism featuring Chris Varney’s work,, aired on 22 May, 2017.
- Presentations at focus groups, webinars, online summits.

Reframing Autism

Non-executive director @ reframingautism.com.au – autism specific advocacy organisation from Sept. 2019 to current. Participated in tasks including planning, reviewing and monitoring of organizational policy and implementation,

1. Contributor to resources such as symposiums, blog posts, Vox Pop videos, etc.
2. Writing up of the RA Position Statement on communication, accompanied by an article co-authored by Drs. Melanie Heyworth and Wenn Lawson and myself, in Frontiers in Psychology, “Perspective: Presuming Autistic Communication Competence and Reframing Facilitated Communication”, Feb. 2022.
3. Board liaison to the Intersectional Advisory Committee (IAC).

Participated in the co-creation of the Welcome Pack by the IAC

https://reframingautism.org.au/service/welcome-pack/

Youth Disability Advocacy Services (YDAS)

1. Working group on COVID 19’s impact on disabled young people, June 2020 – Dec.2020, involvement in meetings and focus groups.
2. Follow up actions including blogs, social media input, research into how COVID 19 has impacted on Disabled Young People (DYP) with report published on Youth Advisory Council Vic. Website
3. Contribution in writing on lived experiences of disabled young people included in the Handbook of Disability Policy, (ed., Prof. Sally Robinson, College of Nursing and Health Sciences, Flinders University)
4. Co-facilitating a focus group of DYP with Program Officer, Is Hay, on Dept of Education Inclusion Plan, Oct. 2021.
5. Panelist on the Youth Affairs Council Vic. Youth Forum – Disability. 14 June, 2022.

Media

- Interviewed by Natalia Chrysanthos, Sydney Morning Herald, and written up as part of an article “Growing awareness of autism shows how future can improve” The Age, 2 Apr. 2024.

- Participated in a video produced by Disability Advocacy Resources Unit (DARU) on disability and disasters, which was awarded the The Disability Leadership Institute Award 2020 in the Social Impact Category. Dec. 2020

https://www.daru.org.au/resource/disability-meets-disaster-case-studies

- Participated in a video “The Silent Treatment” on misdiagnosis of students with complex communication needs, SBS Feed. Nov. 2018 https://www.facebook.com/watch/?v=735545660156060

- Participated in a video produced by Self Advocacy Resources Unit (SARU) on the issues faced by people with a disability included in the Disability Discrimination Act website (Oct. 2013).

- Interviewed by Age journalist Michelle Griffith on AAC and being written up in her articles on Alternative and Augmentative Communication, 2011. http://www.theage.com.au/victoria/voiceless-now-speak-in-their-own-words-20111021-1mca6html and http://www.theage.com.au/national/dispute-sparks-how-look-at-alphabet-boards-2011009-1lfw2.html