by Karen Guldberg , Ph. D.
The late Donna Williams, autistic writer* and self-advocate, made the following point:
“…right from the start, from the time someone came up with the word ‘autism,’ the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced” (Donna Williams, 1996: 14).
In recent years, there have been many powerful autobiographies, blogs, novels and movies about the lived experiences of autistic . Many of these narratives encourage us to examine our assumptions about normality and the notion of impairment. They challenge the framing of autism as a deficit within the individual that should be treated and normalized.
Lived experiences and stories are powerful as they enable us to step into the shoes of the author or narrator. They encourage new and deeper ways of thinking about autism that can provide us with a much stronger understanding of autistic people, as well as more clarity about their experiences and the issues they face. Their perspectives can help us all become better at seeing autism as a multi-dimensional tapestry of abilities and difficulties. They provide us with a different language for talking about autism (Hacking, 2009) and play a vital role in facilitating attitudinal change. As such, they are a powerful way of challenging stereotypes about autism, and confronting ignorance and stigma.
Although narratives provide insights into a particular person’s autism rather than everybody’s experience with autism, each narrative or story can provide us with new insights. Publications, stories and narratives from autistic people can open our eyes to the fact that it is often not autism itself that causes difficulties, but the expectations, interactions and responses from other people– especially the expectation to act and learn in the same way as typically developing people do.
Insider perspectives can enable those who care for and work with autistic people to recognize how we need to adapt our own communication and interaction styles, as well as how we can make the broader context and environment more ‘autism friendly.’ One major implication is that educators and parents should not engage in trying to change a child or an adult with autism into a ‘normal’ individual. Rather, they should focus on appreciating the perspective of the person with autism and providing strategies for them to function and manage within contexts in which they need to participate, such as within their families, schools, communities and workplaces.
Autistic people should be at the center of structural changes that can lead to a better quality of life for them. Thankfully it is now more widely recognized, for example, that the perspectives of autistic people should be central to the successful design and delivery of services. This is important as autistic people and their families have clearly stated that they would like research to focus on services across the lifespan (Pellicano et al., 2014).
In order to further advance our understandings, more energy needs to go into developing knowledge about how to meaningfully consult with and involve autistic individuals who are non-verbal. Additionally, there is a need to better engage autistic students in lesson planning, and in learning and teaching approaches. We also need to develop deeper insights into what autistic students want to achieve in terms of educational outcomes (Wittemeyer et al., 2011).
The way we talk about autism frames how we think about ourselves and others, so talking about the autistic person as a ‘disordered’ other, can reduce the person’s self esteem (Milton, 2014). By being given an opportunity to have their voices heard, many autistic people say they are developing a more positive sense of self and affirmation of identity, and have a stronger sense of belonging to communities (Gillespie-Lynch et al., 2017).
Education is both an art and a science. We need to respond with our hearts as well as our minds, and the ‘inside-out’ perspective helps us connect with what is most important to the people whose lives we want to improve.
*Note: The use of identity-first language can be controversial and individual opinions vary. Some individuals in the autism community, self-advocates, and allies prefer identity-first language such as ‘autistic person’ because they view autism as an inherent part of a person’s identity. However, not all autistic individuals view their autism in the same way. Many young people do not see autism as central to their identity, and would therefore prefer the term ‘with autism.’ The terms ‘with autism’ and ‘autistic’ are used interchangeably by the author to indicate acceptance of different perspectives. To learn more about language preferences within the autism community, please see this blog post from Autistic Self Advocacy Network (ASAN). Additionally, Jim Sinclair, provides his perspective on why he, as an ‘autistic adult’, dislikes ‘person first’ language in this 2013 issue of Autonomy, the Critical Journal of Interdisciplinary Autism Studies.
Gillespie-Lynch, K., Kapp, S.K., Brooks, P.J., Pickens, J. & Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology. https://doi.org/10.3389/fpsyg.2017.00438
Hacking, I. (2009). Autistic autobiography. Philosophical Transactions of the Royal Society, 364, 1467–1473. https://doi.org/10.1098/rstb.2008.0329
Milton, D. (2014). Autistic expertise: A critical reflection on the production of knowledge in autism studies, Autism, 18 (7), 794-802. https://doi.org/10.1177/1362361314525281.
Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 1-15. https://doi.org/10.1177/1362361314529627
Williams, D. (1996). An inside-out approach. London: Jessica Kingsley publishers.
Wittemeyer, K., Cusack, J., Guldberg, K., Macnab, N., Howlin, P., Hastings, R., … & Charman, T. (2011). Educational provision and outcomes for people on the autism spectrum. London: Autism Education Trust. Available at https://research-management.mq.edu.au/ws/portalfiles/portal/83300152/82950984.pdf