How language has the power to shape autistic identity in girls
As a recently qualified Educational Psychologist, fresh out of the doctoral training at Cardiff, one of the things that the COMOIRA framework (Gameson et al., 2003) reignited in me was a fascination with social constructionism.
Vivien Burr’s seminal text “Social Constructionism” became an important anchor for a lot of my thinking across the three years. I was fascinated with the way in which language was so powerful in creating real life outcomes, permeating and constructing our social interactions, thinking, and actions,. As I sat in consultations with schools I became increasingly aware of the way that power was operating in the room through the terms being used. For example, how the use of a word such as ‘manipulative’ could so easily be used to describe a child’s behaviour – and my reflections took me down the path of wondering what the implications of using such a word might be.
Would teachers be likely to want to adjust their practice if they viewed a young person as ‘manipulative’ or would they be more likely to engage in a battle for power and control?
What’s going on for Autistic girls?
At the same time as this re-merging interest in the power of language to influence the daily lived realities of the children and young people we work with, I was also increasingly aware of the experiences of girls who were being diagnosed with autism during their time in secondary school. My involvement was sometimes requested due to Emotionally Based School Avoidance (EBSA), difficulties managing anxiety, or with other wellbeing and mental health concerns. There were also the girls for whom school had no concerns (“they seem fine in school”) but where parents were reporting ‘meltdowns’ and ‘outbursts’ as soon as they arrived in the safety of their home.
As I looked at the published literature on girls with autism I became increasingly aware of what is frequently called autistic masking, camouflaging or autistic compensation, and the link with poor mental health outcomes where such masking behaviours are high (Beck et al., 2020; Livingston et al., 2019). One study that really drew my attention, by Bargiela et al. (2016) was conducted with young adult women recently diagnosed with autism. They talked about the way in which they had masked their authentic selves until their diagnosis had prompted a reconsideration of self.
This is the point at which these two interests – with discourse and with girls on the autistic spectrum – came together to form the topic for my doctoral thesis.
Thinking about language
When I looked at the literature a few things stood out to me:
- The language of autism research was often medical, deficit-focussed and tended to pathologise autistic people. I was struck by the paucity of research on autistic identity, and even more so by the amount of research that appeared to question the ability of autistic people to introspect and develop an awareness of self
- The autistic community were issuing strong challenges to some long-accepted theories which had created some unhelpful and misleading theories about the abilities and deficits of autistic people (see Damien Milton’s work around the double empathy problem (Milton, 2012) for a good example of this). It was advocating strongly for a change in the discourse – away from a language of deficit and towards one of neurodiversity
- Diagnosis with autism during adolescence results in reconsideration of identity, and for many young people autism becomes a lens through which they view self and their previous life experiences. I wondered how the first two points above might then impact on the language young people then come to use when describing self
Do the words we use matter?
I’m assuming that my audience are already sold to the idea that the language we use matters. And it matters beyond what some term ‘wokeness’ or political correctness or any other term that insinuates young people these days are too easily offended. It matters because as Vivien Burr puts it
each different construction also brings with it, or invites, a different kind of action from human beings…descriptions or constructions of the world sustain some patterns of social action and exclude others. Our constructions of the world are therefore bound up with power relations because they have implications for what it is permissible for different people to do, and how they may treat others(Burr, 2003, pg. 5)
So, when we talk about autistic people in ways that denies a level of humanity that we easily give to neurotypical people (i.e., the capacity to have an awareness of self, the ability to have empathy) this will impact, perhaps catastrophically, on the way they view self. Additionally, it makes it permissible for others to treat autistic people in ways they would not treat neurotypical people. A number of examples came out in my doctoral research, one participant explained “although I may be different in certain ways, it doesn’t mean I am not a human (…) sometimes I’ll be upset about something that is genuinely upsetting and I guess they just kind of pass it off as having a meltdown(…) it’s almost as if I can’t express how I feel to teachers because they’ll just throw me in a room somewhere to ‘calm down’”(Morgan, 2023, p. 187).
What can we do?
Be mindful of the actions our language enables
When we support students in school, when we conduct consultations, when we write reports we can be mindful about which actions we are potentially enabling, and which we are shutting off, through the language we choose to use. This clearly goes beyond autistic young people and extends to all the children and young people we have the privilege of supporting, but it seems essential to me that we maintain a focus on our language and the types of actions that our language might result in
Create more hopeful stories
If language and discourse has the power to marginalise and to hegemonise certain ways of being and doing, then we can also think about the ways it has of creating new possibilities and new ways of being / doing. Narrative therapy, therapeutic stories, humanist psychology all have at their core a focus on telling more hopeful stories about who we are and the ways we can act
The power of ‘and’
I am also mindful of the power of ‘and’. Whilst we are using positive language that focusses on strengths and capabilities, whilst we are supporting the use of stories that promote hope and a capacity for change, we need to be mindful that our bureaucratic systems respond more readily to the language of challenge and difficulty. There is a danger if we over focus on strengths that the supports children and young people need are no longer forthcoming. ‘And’ enables us to say two things at once. For example: “Charlie has great ability to attend to an area of interest intently which helps him to become an expert in specific areas of knowledge quickly, and it can be tricky for Charlie if a task does not include his interest in some way”
Becky’s EP Reach-Out webinar – How do girls diagnosed with autism in adolescence construct their self-concept and social identity?
Bargiela, S., Steward, R., & Mandy, W. (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281–3294. https://doi.org/http://dx.doi.org/10.1007/s10803-016-2872-8
Beck, J. S., Lundwall, R. A., Gabrielsen, T., Cox, J. C., & South, M. (2020). Looking good but feeling bad: “Camouflaging” behaviors and mental health in women with autistic traits. Autism, 24(4), 809–821. https://doi.org/10.1177/1362361320912147
Gameson, J., Rhyddrech, G., Ellis, D., & Carroll, T. (2003). Constructing a flexible model of integrated professional practice: Part 1 – Conceptual and theoretical issues. Educational and Child Psychology. https://doi.org/10.1080/02667361003768476
Livingston, L., Shah, P., & Happé, F. (2019). Compensatory strategies below the behavioural surface in autism: a qualitative study. Lancet Psychiatry, 6(September), 766–777. https://doi.org/10.1017/CBO9781107415324.004
Milton, D. E. M. (2012). On the ontological status of autism: The “double empathy problem.” Disability and Society, 27(6), 883–887. https://doi.org/10.1080/09687599.2012.710008
Morgan, R. (2023). How do adolescent autistic girls construct self-concept and social identity? A discourse analysis. Educational Psychology in Practice, 39(2), 178–200. https://doi.org/10.1080/02667363.2023.2181316