On 22 Jan 2021, I attended an online Autism Roundtable organised as part of the Nanyang Technological University Medical Humanities cluster. The event was titled ‘Nothing About Us Without Us?: Meaningful Participation of Autistic People in Autism Research and Advocacy’, a nod towards a disability activism slogan that has found increasing resonance. The session brought together 3 autistics with different life experiences and expertise to discuss how autistics’ perspectives and preferences can be better included in our local context.
Dr. Dawn-joy Leong is a researcher and multidisciplinary artist, lecturer and TEDx speaker whose work has been presented in Australia, the UK, Hong Kong, Singapore and South Korea. She is a pioneer in advocating and mentoring disabled leadership in Singapore, a board member of the Disabled People's Association, and co-founding director of K9 Assistance, Singapore's first organisation for assistance dogs that serve persons with diverse disabilities. Dr. Leong has an M.Phil in Music Composition from the University of Hong Kong, and holds the 2016 UNSW Art & Design, Australia, Dean's Award for Excellence in Postgraduate Research for her Ph.D in Autism, Neurodiversity and Multi-Art Praxis.
Email: dr.dawnjoyleong@gmail.com
Dr. Daniel Leong Han Ming wasn't talking as a child, so his mother quit her job as an English teacher to teach him. She succeeded, and later, Daniel had a rather eventful student life. Finding success as a teacher in WINGS Melaka Early Intervention Centre, Daniel decided to study Special Education and completed his PhD in Special Education with Macquarie University (Australia). Daniel has lectured in a number of educational institutions including Taylor's University, University Malaya, UPSI, and Dika College. Ironically, Daniel himself was diagnosed with autism in 2011. He currently serves the autistic community through AIM High, an autistic peer support group based in Malaysia, together with a team of parents and service providers.
Email: danielleongAIM@gmail.com
Wesley Loh was diagnosed with autism at age 18. After coming into contact with the autism community in 2017. Wesley has been an active autistic autism advocate from running an autistic-led WhatsApp autism chat network of over 20 chat groups, to rallying autistic adults, to volunteering at autism events. Wesley was a keynote speaker at the Life After Death Forum 2019, the first ever autistic-led forum in Singapore. He also participated in the Asia Pacific Autism Conference 2019; hosted in Singapore for the first time, this was a significant milestone for the Singapore autism community.
Email: wesleyautistic@gmail.com
Melissa Ho, an MA student researching autism narratives in Singapore, was the moderator of the online autism roundtable.
Email: yunlingm001@e.ntu.edu.sg
Word Cloud
The session began with Melissa Ho initiating an interactive activity in which attendees anonymously submitted words they thought of when they heard the word ‘autism’. This generated a word cloud somewhat reflective of Singaporeans’ views on autism. The panelists commented that words such as ‘sensory’, ‘social’, and ‘communication’ were prominent, showing some level of awareness of the diagnostic criteria and difficulties associated with autism. However, words such as ‘neurodivergent’, ‘non-neuronormative’, and ‘diversity’ were not popular, while the word ‘support’ was completely missing. This suggested that Singaporeans view disability in terms of a medical and deficits-based model, as opposed to a social and strengths-based model.
Discussion Question: What, to you, would meaningful participation in autism research and advocacy look like?
Coming from a research background, Dr. Dawn-joy Leong and Dr. Daniel Leong argued that research on autism will be inadequate if we do not involve the very autistic people we are researching. Likewise, Wesley Loh argued for the importance of autistic advocates given that advocacy work should be driven by the primary stakeholders who are directly involved. He gave an analogy of how a women’s rights movement would be ineffective if it were organised solely by men without women’s participation.
The panelists agreed that there is currently a lack of meaningful participation in autism research and advocacy in Singapore and Malaysia. This might be due to a conservative Asian culture in which people are afraid to speak up or be stigmatised, and might also be due to apathy and laziness. However, Dr. Dawn-joy Leong pointed out that some progress had been made, with Singapore hosting Asia Pacific Autism Conference 2019 – an autism conference involving real autistic people.
Nonetheless, as mentioned in Eric Chen’s forum letter to The Straits Times, more work can be done to empower the disabled to stand as equals, rather than as an inferior minority. Wesley Loh noted that this would be in line with Singapore’s stance against other forms of inequalities such as gender inequality and racial inequality. The panellists highlighted the need for autistics with resources and abilities to step up to advocate as well as work together as a community with shared goals and beliefs.
Discussion Question: How important would you consider meaningful participation in autism research and advocacy, however you understand it, and why?
Dr. Daniel Leong emphasised that society should value autistics’ views, as services should be driven by the needs of the people we are serving. He gave an example of how the blind community pushed for the braille system despite the initial resistance, as it would otherwise be impractical for them to read traditional printed words. Wesley Loh added that some hidden autistics attempt to pass as neurotypical individuals in order to avoid having their reputation be at risk, which further exacerbates societal misconceptions about and stigmatisation towards autistics in an ableist Asian culture. Instead, autistics should be more vocal about their needs and preferred accommodations. Melissa Ho concurred that supports should not be viewed as additional special privileges, but are simply accommodations that some individuals need in order to get to the same starting point, much like how schoolchildren with myopia are given spectacles to see the whiteboard.
Dr. Dawn Joy Leong recommended that researchers should proactively approach and include the autistic community – a term which refers to autistic individuals themselves, as opposed to the autism community which includes parents and professionals. She gave an example of how a non-autistic research chief who was conducting a project on autistic ageing at the University of New South Wales was willing to re-examine the data in light of what other autistic researchers shared.
Wesley Loh suggested that autistic advocates can start small and step up in various ways depending on their niche. He made reference to the concept of ikigai, which states that our life purpose is found at the intersection of what we love, what we are good at, what the world needs, and what we can be paid for. For instance, tapping on his personal strength of being expressive in both spoken and written forms, Wesley Loh has vocalised his opinions at events such as the Life After Death Forum 2019, served as a report writer at the Asia Pacific Autism Conference 2019, as well as submitted a forum letter to The Straits Times describing the insurer discrimination problem. Similarly, tapping on her artistic talents, Dr. Dawn-joy Leong created several art installations known as ‘Clement Space’ depicting the autistic sensory experience in contrast to the typical clinical ‘Calm Room’. The panellists also encouraged local autistics to network with more experienced individuals, such as by listening to international advocates at the Autism Explained Online Summit 2020. (Read my blogposts on the Autism Explained Online Summit 2020 day 1, day 2, day 3, day 4, and day 5.)
Discussion Question: Bearing in mind existing and anticipated limitations, how can you see local autism research and/or advocacy moving towards your preferred form?
The panellists acknowledged that, from a long-term and birds-eye point-of-view, Singapore is moving in the right direction. There have been initiatives such as the annual Purple Parade and the Asia Pacific Autism Conference 2019, as well as active politicians such as Denise Phua who has made it her personal mission to do more for the disabled community.
Nevertheless, the panellists were eager to see faster progress. In particular, Wesley Loh hoped to see a fundamental mindset change from the medical and deficits-based model towards a social and strengths-based model, which would embrace diversity and provide the right environment for autistics to realise their potential.
The panellists underscored the importance of setting up systematic policies and training programmes for autistic adults to gain competence in self-advocacy skills. This would allow parents and professionals to hear and learn from qualified autistic advocates themselves. Dr. Dawn-joy Leong cited AutismCRC’s Future Leaders programme and I CAN Network’s mentorship programme as examples from Australia, while Dr. Daniel Leong cited United Voice as an example from Malaysia. Singapore can benefit from using these as models for good practices and key focus areas when implementing institutional and ground-up autism advocacy movements.
The panellists also brought up the urgency of connecting with non-speaking autistics in Singapore. Despite the myth that non-speaking autistics have intellectual deficits, they can be highly capable as self-advocates when given adequate training and supported with alternative forms of communication. Dr. Dawn-joy Leong and Dr. Daniel Leong gave the example of David James Savarese addressing the United Nations at World Autism Awareness Day 2019, while Wesley Loh gave the example of Tim Chan presenting talks at TEDx Melbourne and the Autism Explained Online Summit 2020. (Read my blogpost on the Autism Explained Online Summit 2020 day 1.)
Audience question: As autism exists in a spectrum, how can we accurately represent autistic people of varying functioning level?
Wesley Loh observed that traditional terms like ‘high-functioning’ and ‘low-functioning’ are not helpful in accurately representing autistics. Firstly, there is a lack of clarity in defining functioning levels. Autistics can have various combinations of competencies. For example, some autistic advocates may struggle with daily living skills or sensory issues, whereas some non-speaking autistics may be college graduates. Secondly, measuring an autistic individual in terms of how well one can pass as neurotypical is a violation of equality. To draw parallels, we would not measure the intrinsic worth of a woman by how much she can be like a man. Thirdly, assigning positive connotations to the term ‘high-functioning’ tends to downplay the needs of ‘high-functioning’ autistic individuals. All autistics require support for their precise needs in order to thrive. Hence, Wesley Loh shared that rather than representing autism spectrum on a line, it would be more accurate to represent it using the concept of a circle, incorporating various aspects such as language, motor skills, perception, executive function, and sensory filter. Dr. Dawn-joy Leong added that autism can be viewed in an even richer 3-dimensional manner.
Dr. Daniel Leong remarked that the Diagnostic and Statistical Manual of Mental Disorders DSM-V currently uses a severity assessment scale for autism, with levels 1 to 3 referring to different amounts of support needs. Dr. Dawn-joy Leong asserted that the Diagnostic and Statistical Manual of Mental Disorders DSM-V needs an overhaul, giving an example of how AutismCRC has released their own guidelines for assessment and diagnosis of autism.
Audience question: How can autism education and intervention shift away from a medical and deficits-based model towards a more social and strengths-based model?
Dr. Dawn-joy Leong expressed her strong stance against Applied Behavioural Analysis, though she often received backlash as a result. She stressed that despite claims that Applied Behavioural Analysis is a ‘cure’ for autism, research indicates that it not only has low and superficial efficacy rates, but can also be traumatising to autistic individuals. Applied Behavioural Analysis tends to offer caregivers a guarantee for autistic children to be trained to pass as neurotypicals, instead of offering a fundamental respect for autistic children’s autistic embodiment. Therefore, she promoted alternatives that would accept and support autistic individuals for who they are.
Audience question: How can we engage autistic children or teenagers in research or programmes about or for them in an educational context?
Dr. Daniel Leong noted that explaining the research purpose and procedure to participants is a standard ethical requirement for researchers. In the case of autistic participants, researchers can take more care to communicate clearly, such as via the use of social stories.
Audience question: How can we constructively engage other stakeholders including parents, grandparents, sibilings, employers, and the government?
Wesley Loh noted that some Singaporean autistic advocates are attempting to close communication gaps, such as connecting autistic adults and caregivers via the WhatsApp autism chat groups, and addressing the government via forum letters to The Straits Times. Yet, he pointed out that all parties have to play their part – while autistics can make the effort to talk to various stakeholders, these stakeholders also have to have an open and receptive mind.
Dr. Dawn-joy Leong shared that some work is being done behind the scenes by organisations such as the Autism Resource Centre, engaging a wider range of people in future planning for services, facilities and supports. However, there is not as yet a concerted organised approach in Singapore, with work being done by disparate groups. As suggested by Eric Chen in a forum letter to The Straits Times, Singapore may benefit from setting up a tripartite alliance inviting caregivers, disabled people and service providers to participate directly in policymaking. The panellists emphasised that the autistic community does not only identify problems, but also brings solutions to the table. This is especially important in a culture where we are sometimes overly reliant on the government to both come up with and deliver these solutions.
Conclusion
Melissa Ho wrapped up the session with a quote by Dr. Stephen Shore. ‘If you’ve met one person with autism, you’ve met one person with autism.’ Despite receiving the same diagnosis, autistics have different personalities, perspectives, and preferences. Indeed, it is time for us to listen to what they have to offer.
Actions You Can Take
Join the Whatsapp Autism Community Singapore (WACS) chat network run by Wesley Loh.
Visit the WACS chat network website.
Click on ‘Register/re-register yourself’ to submit the form.
Follow the on-screen instructions to join as many chat groups as you wish to join.
‘Community Groups’ category: For those interested in Autism Advocacy and/or about autism in general.
‘Caregiver-focused Groups’ category: For caregivers and/or those interested in connecting with caregivers.
‘Changemaker Groups’ category: For those interested in co-creating change for and with the autism community.
‘Knowledge Groups’ category: For those who have a keen interest in the topics listed.
Support the Insurance Coverage for Autistic Persons - Singapore (ICAPS) Advocacy Group in lobbying for inclusive insurance practices for equal access to essential insurance for autistics.
Sign the petition and read The Straits Times forum letters appended at the end of the petition description.
Follow the ICAPS Advocacy Group’s Facebook page, Facebook private group, and Instagram account.
Register your interest to contribute in driving this motion.
Email icapsmovement@gmail.com to provide evidence for the cause, if you have ever faced insurers' discrimination when buying insurance as an autistic or for an autistic child. Please include the insurance company name, discrimination details, and supporting documents if available (e.g. rejection letter, email correspondences, etc.) with sensitive information blanked out (e.g. NRIC number, home address, policy number, etc). If it is truly a case of discrimination, the ICAPS Advocacy Group can report it to the Monetary Authority of Singapore.
Rejection of insurance application because of, or on the basis of, autism and/or other disabilities (e.g. ADHD, GDD, intellectual disability, etc.)
Exclusions on comorbid conditions (conditions that tend to co-exist with autism) that the applicant was not diagnosed with.
Exorbitant loading fees.
Others (please specify).
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