I came across an interesting journal article about autism this week. The paper is open access so will be available to all. The article is called “Autism is me”: an investigation of how autistic individuals make sense of autism and stigma and was published in a 2022 issue of Disability and Society.
The authors examine perspectives for understanding autism and the stigma that autistic people often have to carry. Their paper is presented with the following “points of interest”:
Monique Botha, Bridget Dibb & David M. Frost (2022) “Autism is me”: an investigation of how autistic individuals make sense of autism and stigma, Disability & Society, 37:3, 427-453, DOI: 10.1080/09687599.2020.1822782
- Autistic research participants consider their autism to be value neutral – akin to any other feature like race or hair colour.
- Participants feel that society sees their autism as being a bad trait to have.
- Participants struggled with the tension in how they see themselves, versus how they believe society sees them.
- Participants are caught between disclosing that they are autistic and concealing it, but feel they are treated negatively either way.
- Participants use the word “autistic” to reclaim autism from stigma, and to reframe peoples understandings of autism to be less negative.
All these points really resonated with me.
The first line of the paper’s introduction didn’t resonate so well – we (autistic people) “lack the ability to infer minds of others” – no, we lack the ability to infer the minds of the predominant neurotype. We “struggle to empathise” – no, no, no! We can be overwhelmed by empathy! The claim that we “display extreme male traits” is so annoying to read (no, I’m not obsessed with trains) I can’t even write something short to respond effectively to that! The rest of the paragraph isn’t much better and the second paragraph is very negative about the ability of autistic people to contribute to any understanding of autism. Some small changes in phrasing of these initial paragraphs to challenge the dogma and status quo would have made a huge difference. Although the authors challenge their own initial summary in the discussion later in the paper.
Anyhow, things improve in the third paragraph. The views of autistic people begin to be recognised and the value that the lived experience can bring to research is more positively explained. Later the authors write about dehumanising research and it makes for stark reading, including some discussion of eugenics and the value of people who are productive and accepted as normal being connected to the value of life – frightening.
Stereotypes also continue to dominate the perceptions of autism and the media plays a significant role in this perpetuation of negative judgements of autistic individuals. The masking and concealing of behaviours and diagnoses by autistic individuals are the result of this negative perception from society. Autistics themselves are accepting of neurodiversity rather than pathologising, meaning that we do not accept that autism means suffering and that we accept the ups and downs of being autistic rather than taking a negative stance.
I won’t go into the detail of the methods used, but essentially the researchers recruited 20 autistic identifying (diagnosed and self-diagnosed) individuals for interviews covering three main topics: diagnosis, identity, and community with questions focused on perceptions, stereotypes, and interactions with other autistic people. The researchers also kept their own reflective journals to understand their own role and impact on the research.
The classic comment from individuals with the predominant neurotype who say “we’re all a little bit autistic” appears in the commentary and a dislike for the phrase “autism spectrum” in relation to this neurotypical viewpoint of everyone having autistic traits. I too dislike the term “spectrum” because it creates thinking around a linear and continuous model of autism which does not reflect the spiky 3D profile of an autistic person and their traits.
The authors also describe how the participants are aware of their difference from a young age, before any diagnosis, and that the diagnosis is seen as a positive for identity and meaning. I really recognise that in myself. I have spent my whole life feeling different, trying to fit in, trying to understand why it’s so hard to fit in, and in realising I am neurodivergent and being able to have a whole new understanding of who I am based on my diagnosis. Labels can be unhelpful, but they can also bring greater understanding and acceptance of one’s self – certainly that is my personal experience.
The article also describes how autistic people must live with the stigma of their neurotype and in the context of an ableist society. The stereotype of a male (and usually racialised as White) non-verbal autistic was significantly limiting for the autistic participants, some reflecting on how they were accused of lying or being ridiculous because they didn’t fit the stereotype. The double bind of being perceived as weird when concealing their autism and trying to fit in (often without success) but fearing disclosure because of the negative perceptions, stereotypes, and lack of positivity. This double bind results in continued concealment and the stigma being unchallenged.
Language was clearly important for the autistic people in the study. Using positive language, using accurate language, and using language that is inclusive and compassionate. Person-first language (i.e. “person with autism”, or “having autism”) was seen as dehumanising as autism cannot be separated from the person. Certainly I feel that I am autistic, I am not a person with autism. Autism is intrinsically part of who I am and reinforces that sense of autistic identity. Similarly I like the description of me being neurodivergent – different and divergent from what is typical, not medicalised as being deficient or disabled. Reclaiming the term ‘autistic’ when ‘person with autism’ was suggested as being the appropriate term is a such a key part of the autistic community. Identity first language reclaims power for the autistic person.
I thought the paper brought together a lot of interesting concepts, and the voice of the autistic person is heard in their summary ‘points of interest’. The authors provide directions for future research and suggest stigma management and coping mechanisms as avenues, and the reclaiming of identity-first language for further work. I’m really interested in the role of stigma and language alongside concealment and masking. So much more needs to be done to change the medicalisation and pathologisation of the autistic individual.