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Guest post by Bobbi Elman
I want to look at something that’s still relatively unknown in the Autistic community: Exposure Anxiety, or EA for short. This "excruciating sense of audience to one’s own existence" can seriously shape how you see yourself and how you react to the world. It is more than the feeling that you are being watched. It is deeper and different to being shy or introverted.
Exposure Anxiety, a term coined by Donna Williams, a notable Autistic author, artist, and consultant, describes the feeling of Exposure Anxiety. The feeling of every action and more is scrutinized by an audience. This can lead to profound effects on daily life, causing Autistic individuals to retaliate, avoid, or divert attention to cope. Understanding these effects can foster empathy and a deeper understanding of the challenges faced by those with EA.
Exposure Anxiety effects are almost like demands, which is why I personally believe it is a type of Pathological Demand Avoidance or PDA. Interoception can even be impacted, with bodily needs seen as an invasion, a demand to retaliate, avoid or divert. Donna speaks openly about how she urinated in her bedroom but also avoided it as much as possible as a child, along with other bodily needs leading to medical issues.
One of the trickiest parts of EA is the belief that it’s there to protect you. The compulsive and involuntary reactions caused by EA are seen as necessary defences to keep your true self safe. This belief can be incredibly powerful, making it tough for people to separate their identity from the hold of EA. It’s like having an internal bodyguard that’s always on high alert, ready to shield you from perceived threats—even if those threats aren’t necessarily “real” but perceived.
Going back to this idea of “excruciating sense of audience…” Imagine constantly feeling like your own existence, including all you do and say, is being watched. This pressure can lead to behaviours designed to manage that pain, and it does feel like pain. Retaliation might look like lashing out when you feel cornered. Avoidance could mean steering clear of anxiety-inducing situations or places. Diversion might involve redirecting attention away from yourself in any way possible.
But the impact of EA goes beyond these immediate reactions. Over time, the gap between your true self and the EA-driven self can confuse and isolate you, especially as an Autistic person we feel, perceive and think differently to most of the society we live in. It becomes harder to tell the difference between what you genuinely want and what you’re doing to manage EA. This internal struggle can be exhausting and emotionally draining, leading to a constant battle between authenticity and protecting yourself.
To give you a clearer picture, I will discuss my youngest ”Max” experience living with EA. For
background, I am AuDHD (Autistic and ADHD), as are my two now adult children. Teaching Max required a unique approach. Direct teaching was impossible; instead, pretending not to know how to do something or doing things for oneself was the only acceptable way. Max would retaliate or avoid any attention or perceived attention, making praise and public acknowledgement intolerable. This avoidance extended to various aspects of life: no school assemblies, no birthday parties, no wrapped presents, no physical education due to the fear of changing in front of others, and even swimming with clothes on to avoid Exposure Anxiety.
Directly confrontational approaches, such as overt praise and forced conformity, often make Exposure Anxiety worse. Instead, indirectly confrontational methods can help reduce EA as the attention/ demand is greatly reduced. These approaches include creating environments where there is no perceived audience, minimising direct interpersonal interaction, and using impersonal, pragmatic communication.
For example, when Max was younger, using a toothbrush with a "voice" allowed for indirect engagement without triggering Exposure Anxiety. As Max grew older, this approach evolved. But instead of expressing personal needs, objects were used to convey desires, reducing Max's Exposure Anxiety. Managing Exposure Anxiety requires understanding and patience. It’s about creating environments where individuals feel safe so EA isn’t triggered. Indirect approaches, flexibility, and empathy are key to supporting those dealing with EA.
In school, EA manifested in what others called “extreme challenging behaviours”. Max would hit, kick, run, curse, scream, and refuse to continue with tasks. High school presented another challenge when a new headteacher’s decision to reduce the scores of autistic students led Max to stop attending classes. The disruption of routine and separation from a long-time friend and crush was too much, and EA prevented Max from adapting to the new situation.
Exposure Anxiety often forces individuals to appear indifferent as a defence mechanism. Showing care or commitment exposes one to vulnerability and anxiety. For Max, this also meant expressing emotions through gestalt/echolalia—repeating phrases from video games or TV shows—rather than using personal words. This behaviour provided a shield, making it easier to avoid showing true emotions.
Eating when no one was watching, avoiding asking for things, and appearing indifferent were all manifestations of EA. Reports from professionals and educational staff often misinterpreted this indifference as genuine, not recognising it as a defence against Exposure Anxiety.
Max’s transition to college marked a new beginning in confronting EA. The choice of course and college was Max’s own, a significant step in taking control. Despite initial setbacks, such as surprise tests and group activities during induction, Max managed to persevere. Overwhelmed during lunch, Max bravely communicated with a teacher and left the college. Max returned to college the next day.
Max also attended classes online during the COVID lockdown, finding relief in the absence of the perceived audience. The demands of the course are manageable without the added pressure of being watched. A flexible schedule and a supportive teacher who shares Max’s interest in gaming had also been crucial in Max successfully attending and finishing college with a distinction. Max is now in their second year of university with new challenges to navigate, and they have their ups and downs, but Exposure Anxiety is being managed so that Max can comfortably attend and thrive.
Exposure Anxiety is a complex and multifaceted experience that can profoundly impact one’s sense of self and interactions with the world. The similarities with PDA highlight the intricate interaction between identity and protective mechanisms. By understanding the role of EA and its influence, individuals can begin to navigate the challenging path towards integrating their authentic selves and managing the Exposure Anxiety that shapes their loves.
Understanding Exposure Anxiety, especially in the context of the autistic community, is crucial for fostering empathy and providing the right kind of support. Recognising the unique challenges of EA can make a world of difference, whether through indirect engagement methods or creating a safe environment.
by Bobbi Elman (she/they)
Bobbi is an AuDHD Consultant, Coach, Presenter and Educator of the Autistic experience. Bobbi has worked closely with parents, schools and organisations for over 16 years. They have worked with various Autistic and non-Autistic professionals in multiple ways, including online workshops and events with advocates like Aucademy. She is taking a medical leave from working but will return in a few months.
Website: https://www.autismadvocate.co.uk
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