These are notes from a talk I did for Neurodiversity Celebration Week about being an autistic user researcher and my thoughts on the myths I hear about why autistic people can’t or shouldn’t do this job

Myth: Disabled people aren’t in the room with you

I’m not the only disabled person in the room who’s experienced someone’s bad take about disability in front of you not knowing you are a disabled person. How many of us have heard someone say “we don’t have any disabled staff” not knowing you are the “disabled staff”. This talk was inspired by seeing a number of conversations in person or in x-gov slack about whether it’s possible for autistic people to be user researchers, and as an autistic user researcher I want to dig into why people might think this and why they shouldn’t.

Myth: Autistic people don’t have empathy

I wanted to tackle this myth because it’s something I’ve heard a lot, particularly in my field where empathy is seen as a key skill, rightly or wrongly. In fact, I first suspected I might be autistic when I was criticised for having no empathy AND too much empathy in the same performance review! Autism is a spectrum and we all have a different relationship with empathy, but this general myth is a dangerous misconception. Firstly, we don’t tend to regulate emotions in the same way as neurotypical people – some autistic people experience alexithymia which is where they find it hard to identify or describe their own feelings. This can make emotional connection difficult. We may also feel overwhelmed by strong emotions and wait to feel them until we feel safe, which can at the time make us look cold or unfeeling. We’re not great at social or facial ques, which again makes identifying emotions in other hard unless very obvious. I feel more like I’m hyper-empathic, which can cause it’s own problems as I can be easily swayed by strong emotions.

You might have heard of the double empathy problem. This suggests that while autistic people may look unempathetic to neurotypical people, neurotypical people also struggle to empathise with us! It’s a bidirectional issue that is pathologized in us because we are the minority, or non-typical. Better communication such as being more direct can help make this less of an issue.

Myth: Empathy is required for user research

Many of us work with participants in difficult or uncommon situations; victims of crime, frontline staff, disabled people. I’m currently working on a project where I’m talking to a lot of health and safety inspectors; can I really put myself in the shoes of someone on site just after a fatal accident?

Do you mean empathy or do you mean user-centred? Can you empathise with something you’ve never experienced? Does putting yourself in someone else’s shoes centre the user, or yourself? Do I care about what my users do, or what I would do in the same scenario with them?

I’m not saying we can’t sympathise with people, or have compassion with them, but I’m here to listen to my users, believe them and tell other people their stories. Sometimes we can’t help but empathise and that’s ok to, but we have to make sure we protect ourselves.

Myth: Autistic people are introverts who can’t talk to people

I’ve never been a fan of the introvert/extrovert binary – I am more down the extroverted end hence me being here talking to you folks today. People sometimes are surprised by this because I do things like flake out of social events, or leave early etc but this is often down to sensory issues.

We tend to equate introvert with poor social communication issues, and as autistic people we tend to not be great at those which is where I think this myth comes from.

I know I rely on masking a lot to get me through research sessions, so while I do gain energy from personal interaction, masking is energy intensive so I still have to make sure I balance that energy. I think most user researchers have a similar battle. As an autistic person however, low energy or extended time in an energy deficit can lead to shutdown, meltdown and eventually autistic burnout.

Autistic people have a superpower (that can be exploited for profit)

Autistic people, like disabled people in general, are underemployed. the latest official statistics show that only around 3 in 10 working age autistic disabled people are in employment, compared with around 5 in 10 for all disabled people and 8 in 10 for non-disabled people. You might be able to see how belief in the previous myths I’ve discussed might contribute to this problem as well as struggles with job application processes and difficulties getting reasonable adjustments.

The neurodiversity movement has been instrumental in shifting the dialogue about autism and other forms of neurodivergence to be about natural human variation with it’s positive and negative sides rather than a medical model that only sees autism as a disorder to be managed, or “cured”.

One thing to come of this movement is the rise of awareness sessions, and in particular giving examples of positive traits associated with autism (one on a post-diagnostic letter I got included punctual, very amusing). This is a good thing as improved understanding of autism helps everyone. We’ve gone a bit too far with the superpower idea though. Most workplace awareness sessions seem to be “selling” our positive traits while ignoring negative ones, or even downsides. You’ll hear a lot about hyperfocus for example, and that can be great if you need someone who sits down and doesn’t stop until they get things done, but hyperfocus can also be exhausting if overused, and also isn’t always something that can appear on command. No shade to folks who talk about superpowers themselves, but the aim seems to be “see these people can fit in” rather than thinking about the restructure of work. Also my main superpower is “can hold a grudge forever” which I don’t think employers find helpful,

Takeaway: Don’t make assumptions

All of us are different, and we don’t need allistic people selecting us out of jobs or tasks we want to do. You don’t know if I’m autistic unless I tell you, so when you’re dropping hot takes about what I can or can’t do, don’t assume I’m not in the room with you. We’re all different, and that should be too obvious to say but it isn’t.