Welcome to this small segment of our diverse and inclusive world. This column has the intention of musing on, reporting about and considering diversity initiatives and various threads of our society’s tapestry of identities and interactions.
Contributor: Tabin Brooks (Charles Sturt University)
Since 2015, the author and educator Chris Bonnello has engaged the autism advocacy community through work published on Autistic Not Weird (https://autisticnotweird.com/), and collected data on attitudes and beliefs surrounding autism and autistic people, running two of the largest surveys of including voices from those who are diagnosed with autism, as well as those who are self-diagnosed, parents/caregivers and professionals. The first of these surveys was conducted in 2015, with an initial 477 respondents. The second, with a participation pool of 11 521 (3 431 autistic participants) was conducted in 2018, with the latest instalment of data collection, reflecting contributing voices from 7 491 autistics, and 11 212 released on the 23rd of March, 2022.
As educators and knowledge experts in the academic world, understanding the intersections of the autistic community is of particular importance when considering the need (and growing trend) towards inclusive education. As an autistic academic with interests in linguistics and psychology, I find this data of pertinent and personal interest.
Intersectionality, co-occurring conditions and traits: … a majority of autistic people identify as LGBT+… three times more likely to be transgender, and almost four times more likely to identify as disabled. Around 40% of autistic people also have ADHD. Over a third of autistic respondents have PTSD.
Bonnello, 2022: https://autisticnotweird.com/autismsurvey/
The intersection between autism and mental health conditions is not restricted to PTSD, with the majority of autistic respondents reporting experiences of depression, anxiety, social difficulties, sensory differences, and enthusiasm for special interests. Other noted co-effects of autism reported by a majority of autistic participants were: being academically gifted, being bullied, experiencing intense empathy and executive dysfunction.
This intersectionality may bring to mind fictional characterisations of those that might have been labelled as nerds. That fictional representation may well wear a male face – this is partially due to media representation of autism and traits associated (Willson, 2021). In addition, the masculine nature of assumptions surrounding autistic presentation may reflect the gender bias in diagnosis as highlighted by Spectrum Labor (2007) which was used to support the report prepared by The Senate Select Committee on Autism (2022). This gender bias may reflect a difference in genetic expression based on sex, but also may reflect more cultural attitudes surrounding the expression of autistic behavioural norms. It is of particular note that Bonello’s (2022) female autistic respondents represented 39.34% of the total respondent pool, while male autistic respondents represented 11.00%, less than the 15.42% of non-binary autistics. As pointed out by Bonello (2022), this may be an artifact of the observed gender disparity in survey sampling respondent rate, where Smith (2008) found women were more likely to complete surveys for the purpose of academic research, though this disparity calls into question assumed autistic masculinity.
As an academic community, how should we respond to this new data?
Incorporation of intersectionality into practice entails not only understanding the history of external, appellative discourses, but also incorporating the latest consultative research that allows for the use of accurate knowledges and respectful language. As discussed by Chapman (2013), respectful language can be used in teaching relationships to display respect, a practice Chapman states is “a demonstration of ethical commitment and requires the development of moral judgment underpinning inclusive practice” (2013).
If our aim is to create inclusive experiences in education, policy and community, this type of consultative research becomes foundational to it’s development. Using appellative rather than consultative data collection can lead to discourses that do not reflect the discourse of the community in question. For example, Autism Speaks, an organisation surrounded by some controversy in the autistic community stated via quote in their announcement for autism research funding the need for a “cure” (2009). This is unaligned with the autistic community’s attitudes, which as detailed by Bonnello (2022, 2018, and 2015) overwhelmingly strongly disagree with the desire to cure their autism, with 60% of the respondents in the 2022 study stating that they liked being autistic, with nearly 90% identifying education about autism with associated positive impact. Nearly 90% of the respondents knew they were different from an early age, and 97% of respondents overall felt that the general public did not understand enough about autism. The popularity of unaligned and appellative discourses, such as those associated with the aforementioned Autism Speaks appears to support this perception.
Practical Takeaways
Autistics exist in your world. Autistics are neighbours, friends, colleagues, therapists, government officials and more.
Many autistics will “mask” (disguise autistic behavioural norms) in collaborative communication with other neurotypes, but do not experience the same pressure to mask when in dialogue with fellow autistics. This is known as the Double Empathy problem, as referenced by Bonnello (2022).
When referring to autism, the most popular referential term to use is “neurotype” (the least popular is “disorder”), and identity first language (autistic person, autist) is used by over 90% of autistic people surveyed. Person with autism is used by only 20% of the autistic population surveyed – and Bonnello (2020) identified an association with identity first language and feelings of positive empowerment.
The perceptions and stereotypes associated with autistic discourses may often be unaligned with the lived experiences of the community. The progression towards representative and accurate research is an ongoing process. To avoid misrepresentation, collaborative or community based research should be prioritised, as appellative (understanding from the outside) approaches have been shown to increase this misalignment.
If in doubt, ask and start the conversation.
References
Bonnello, C. (2015) I ran an autism survey. The results? Quite revealing. – Autistic Not Weird, Autistic Not Weird. Available at: https://autisticnotweird.com/survey/ (Accessed: 26 March 2022).
Bonnello, C. (2018) 11,521 people answered this autism survey. Warning: the results may challenge you. – Autistic Not Weird, Autistic Not Weird. Available at: http://autisticnotweird.com/2018survey/ (Accessed: 26 March 2022).
Bonnello, C. (2020) To everyone who tells me not to say “autistic person”, Autistic Not Weird. Available at: https://autisticnotweird.com/autistic-person/ (Accessed: 26 March 2022).
Bonnello, C. (2022) Results and Analysis of the Autistic Not Weird 2022 Autism Survey – Autistic Not Weird, Autistic Not Weird. Available at: https://autisticnotweird.com/autismsurvey/ (Accessed: 26 March 2022).
Chapman, L. M. (2013) ‘Respectful Language: How Dialogue Supports Moral Development of Leaders and Respectful Culture’, Journal of Psychological Issues in Organizational Culture, 3(4), pp. 78–95. doi: 10.1002/jpoc.21070.
Smith, W. G. (2008) ‘Does gender influence online survey participation? A record-linkage analysis of university faculty online survey response behavior’, Eric Ed501717, pp. 1–21. Available at: http://files.eric.ed.gov/fulltext/ED501717.pdf.
Spectrum Labor (2007) Submission to The Select Committee Inquiry into the services, support and life outcomes of the Autistic community, The Senate Select Committee on Autism. Available at: file:///C:/Users/User/Downloads/Sub01_Spectrum Labor.pdf.
The Senate Select Committee on Autism (2022) Services, support and life outcomes for autistic Australians. Available at: https://parlinfo.aph.gov.au/parlInfo/download/committees/reportsen/024412/toc_pdf/Services,supportandlifeoutcomesforautisticAustralians.pdf;fileType=application%2Fpdf.
Willson, M. N. (2021) Autism Does Not Speak: An Analysis of the Silencing of the Autism Spectrum Disorder Community in Television Dramas. ProQuest Dissertations Publishing.
