This article was inspired by two online sessions I attended last week. The first, on neurodiversity in the workplace, was presented by Dr Carla Groom, Deputy Director of Behavioural Science at the Department for Work and Pensions (DWP). Dr Groom described what neurodiversity means (and doesn’t mean) and shared from her lived experience as someone diagnosed as being on the autistic spectrum.
Discussing labels, she said she prefers the term autistic spectrum condition (ASC) to autistic spectrum disorder (ASD), which is the medical term for what was previously called autism. But what resonated most for me was what she said about the label "high-functioning." On one level, she conceded, the term describes her well (her LinkedIn profile describes her as a “[s]enior leader and behavioural science pioneer”). She nevertheless hates it when applied to her autism, because it denies or dismisses the work and effort that goes on behind the scenes for her to present this way and achieve the success she has:
[S]omeone like me might be called high-functioning. And fair enough, I am high-functioning by most reasonable definitions. But if you then say I have “the high-functioning kind of autism” or that my autism is “mild”, then I might get a little bit cross and say that I work extremely hard to make it mild for you. It affects everything about my experience of the world, for good and bad. To deal with a world designed for a completely different kind of human, I am constantly planning, risk assessing, coming up with mitigation strategies and suppressing my anxiety when those don’t work. They are invisible struggles.
These coping strategies are called “masking” and it’s exhausting. I’m working to mask less and embrace my difference. That means, ironically, that I will seem more “autistic”, but I’m hoping that gives permission for other people to step outside narrow ideas of desirable behaviour, and see that there are many different ways to achieve good outcomes.
Summarising it for me later, Dr Groom said, “I don’t mind being called ‘high-functioning,’ although I do think ‘high masking’ is more helpful.”
I’m in no way qualified to talk about masking (also called camouflaging) in relation to autistic spectrum condition, but I found this description helpful:
Hiding who you are is an uncomfortable and exhausting experience. For many autistic people, that experience is a daily reality. In places where the full spectrum of neurodiversity is not understood or welcomed, autistic people often feel the need to present or perform social behaviors that are considered neurotypical. Some people may also feel they have to hide neurodiverse behaviors in order to be accepted.
I’ve included a list of resources at the end of this article if you’re interested in learning more.
Dr Groom’s account reminded me of something I learned early in my friendship with Fran. Whilst she doesn’t use the terms masking or camouflaging, Fran has often spoken in similar terms about how hard she works to present well in public, so as to fit in and not attract unwanted or hostile reactions. By that, she means hiding or minimising the impact of her mental and physical health conditions. Fran’s symptoms vary in frequency and severity but include mania, depression, suicidality, pain, and debilitating fatigue.
Fran hides these away because being open about her conditions can lead — and has led in the past — to varying degrees of stigma, rejection, and disrespect. I’m one of the relatively few people she trusts enough to be honest with, but even with me, there are things she tends to keep to herself. She’s not alone in this, of course. We all do it, to some extent. I do it, albeit for different reasons. We call it faking fine.
The downside is that the people Fran is “presenting well” to never learn the truth. Whether on social media or in person, they see the places she goes, the people she knows, and the things she achieves, and assume she’s okay. The reality is rarely so simple. They don’t see the courage and sheer hard work it takes for Fran to manage her conditions and make the best life she’s able to. This makes me sad, but I understand why she does what she does. It’s not Fran’s job to educate society to accept the realities of her life. She does what she needs to do, which includes presenting in ways calculated to evoke fewer unhelpful, ignorant, or hurtful reactions.
Fran is not alone in this, nor is it limited to mental illness and neurodiversity. One friend told me she experienced something similar following surgery on her hand. People saw the functionality she’d regained but didn’t necessarily appreciate the hard and painful work it took to achieve and maintain mobility, or the prescription pain medication she still needed.
Whilst useful, masking or “faking fine” can be extraordinarily frustrating and exhausting, given the effort involved in presenting as “fine” or “high functioning.” It’s an effort and burden that, almost by definition, goes unrecognised. It can have more serious consequences if it deepens a sense of disconnect and lack of awareness between the person wearing the mask and those around them.
The second talk I attended was organised by UK suicide prevention charity Grassroots, for World Suicide Prevention Day. Mental health advocate, broadcaster, and author of A Walk from the Wild Edge, Jake Tyler described his experiences during lockdown in 2020.
Asked about the theme of this year’s World Suicide Awareness Day, “Creating Hope Through Action,” he said the most important action he’d taken during lockdown was to nurture the relationships that meant most to him. Connecting online, rather than face-to-face, had opened him up to people and friendships that might not have developed or grown as they did had it not been for lockdown. Those connections had been powerfully protective in the context of suicidality and self-harm.
I brought this up the next day on a work call with fellow Mental Health First Aiders. We agreed that working and socialising virtually had changed our relationships with friends and co-workers, in many cases for the better. Connecting virtually on video calls as we worked from home allowed us to let down our usual masks to some degree, and interact more genuinely. In the words of one colleague, “The biggest positive from the past eighteen months or so is the way people have connected more deeply with each other.” I’ve noticed this in my own connections with friends and colleagues, although it’s not necessarily so for everyone. Setting our masks aside, whether virtually or in person, requires a depth of trust that’s not always present, and cannot be assumed.
Is mask-wearing healthy or not? I don’t think there’s a definitive answer to that question. I prefer to think of it as useful; necessary, even, in some circumstances. It can be a strategy for navigating a society unsympathetic of — and impatient with — anyone unable or unwilling to meet its behavioural norms. It’s neither kind nor helpful to coerce people into setting their masks aside, especially if that involves shaming them into doing so or suggesting mask-wearing is in some way dishonest or deceitful. We wear our masks for a reason and no one has the right to deny or invalidate those reasons.
Our aim, as individuals and as communities, must be to build and maintain spaces in which we feel safe to set our masks aside when we choose to, but also feel safe to use whatever masks and strategies we need to, without risk of censure.
That can only happen when we are aware of the masks we choose to wear, and the reasons for doing so. We can start by challenging the stigma associated with mental illness, invisible illness, disabilities of all kinds, and ways of apprehending the world that are other than neurotypical. What matters most is how we relate to and treat one another, however we present, recognising that without a doubt there’s more going on for each of us than we see or choose to share.
Further Reading
What is autism? (NHS)
What is autism? (National Autistic Society)
Blending Into the Crowd: What is Autism Masking? (Autism Parenting Magazine)
Autism Masking: To Blend or Not to Blend (Healthline)
Photo by Izzy Park on Unsplash.
