In this blog post, we will tell you about our fourth meeting with our steering group.
This meeting had three main goals:
- To discuss findings of the qualitative survey analysis
- To exchange ideas about key messages stemming from the analysis
- To inform about the next steps of the project
Qualitative Survey Analysis
In our last blog post, we shared a first glimpse of the quantitative survey results. Since then, we have started analysing the text responses using a sociolinguistics framework called “tactics of intersubjectivity” (Bucholtz and Hall 2005). This framework helps us to understand how people position themselves along 3 axes:
- Assimilation (“I am similar to others”) vs Distinction (“I am different to others”)
- Authentication (“I am being authentic and true to my identity”) vs Denaturalisation (“My identity is crafted or fragmented in some way”)
- Authorisation (“I am supported by others”) vs Illegitimation (“I am marginalised by others”)
In general, our analysis and use of this framework resonated with the group. We agreed that it’s important to raise awareness of things like masking and online discrimination. Our next step here is to write up the analysis for publication.
We also discussed differences in autism stigma between European and Asian cultures. This may play a role in whether or not somebody decides to talk about being autistic on public social media platforms. It’s important we pay attention to these gendered, cultural dimensions – we can’t assume that all autistic people will have the same experience on social media.
Finally, Joe pointed out that some participants might have studied their interests in education or have a job that’s related to their interests. So, it could be interesting to see if participants refer to this when discussing their interests. For example, if this makes their interests seem more “legitimate” or gives someone the “grounds” to talk about interests.
Public Messaging
Following our discussion of the research findings, we wanted to know what the “key messages” should be.
First, we agreed that it’s important to highlight ‘Implicit’ forms Illegitimation, which include being stereotyped or misunderstood. Policymakers and government narratives often emphasise forms of Explicit Illegitimation, such as name-calling or cyberbullying. However, it’s also difficult when neurotypical users lack the relevant knowledge about what it means to be autistic. Therefore, we should try to raise awareness of autistic people’s communication and sensory needs in online spaces. The burden should not be on autistic people to continually explain what autism is and request accommodations. Instead, neurotypical people must make the effort to educate themselves and pro-actively build inclusive, accessible spaces.
Second, we considered whether we should emphasise ‘difference’ or ‘similarity.’ On one hand, we need to raise awareness of the diversity of autistic ways of being and communicating. This means that proper accommodations can be put in place, without needing to ask for them beforehand. However, inclusion is also about feeling similar to other people in a space. In our survey, several respondents said that autism does not “define” them or that autism is not as “relevant” as having an interest in a given topic. So, we wanted to know how we can reconcile these two aspects.
Here, Joe highlighted that it’s important to talk about similarity, so we can align with the goals of the Equality Act and prevent dehumanisation. However, we need to strike the right balance and ensure that we don’t go so far as to erase difference. For example, both an autistic person and a neurotypical person might change how they communicate to fit in better with an online group. But for an autistic person, this masking is more exhausting and more likely to lead to negative consequences like burnout. We shouldn’t downplay these differences, because it could make it harder to access support. Joe also pointed out that highlighting diversity is also a way of highlighting similarity – one thing we all have in common is that we are all different! Autistic or not, everybody has their own preferred ways of communicating. These differences must always be respected.
Next steps
Finally, we shared our plan for the next stage of the project. Over the next four months, we are going to observe participants’ public social media activity. At the same time, we will ask some participants to share images that relate to their areas of interest (e.g. pictures of cats) to a private social media channel, along with a short caption.
Here, we received some constructive suggestions on what we should look out for. For example, we drew similarities between the ‘captioned images’ study and anonymous ‘confessions’ pages on social media. We wondered if the privacy might encourage participants to write more negative or critical posts. Finally, we discussed the potential impact of alexithymia and how we can help participants who might struggle to name or to recognise their emotions. For example, rather than ask participants to share what makes them “happy,” we will ask to share what they “like.”
