Exploring the roots of social anxiety, Sara Meyer sheds light on the power of diagnosis and the impact of connecting with other Autistics.
I’m out for coffee with a friend I’ve known for a long time. I realise, now, that people do this for fun, that they actually like it. I should like it too, but I’m holding the table so tight my knuckles are white. My legs are so stiff they’re going to hurt for the rest of the day. There’s a buzzing in my ears and I feel slightly faint.
We’re here to catch up on our lives, and I have a lot of work to do. I have to make sure I get things right and don’t seem weird. I have to make sure I nod at the right time and smile a lot, otherwise my friend will think I don’t want to be there. I have to make sure I say “mmhmm” in a sympathetic voice as she talks to me about her struggles with her husband, her kids, and her boss. I’ve practised that sympathetic voice many times now. Otherwise, I know she’s going to come at me with the comments about how I don’t care about anyone but myself. How I think I know everything. How I think I’m better than everybody else, just like they did when I was a kid.
I’m working so hard that I can’t catch my breath. I realise I’m hungry and I haven’t eaten in hours, but it isn’t the right break in the conversation to suggest ordering right now. I make it through an hour of listening without accidentally insulting my friend or showing how much I want to go home, I hope. I do like her and want to be her friend; it isn’t that. But I have to concentrate harder than I did in any of my three-hour exams at university.
When it’s over, I’ve got nothing left. I get home and shut the blinds and I can’t do anything- not play piano, not write, not cook anything for dinner. I know I seemed capable, focused, maybe even empathetic. Most likely hyperactive too, which often seems to happen. But my whole body hurts from the strain of concentration and anxiety.
I look back on experiences like these through the lens of an adult diagnosis of autism, and I don’t know how I did it. As a young adult desperate to have friends so I wouldn’t look weird, I forced myself to have these kinds of interactions once or twice a week. Some of them went better than others — especially those where the friend I was meeting was another then-undiagnosed Autistic. It seems I unknowingly collected a fair number of Autistic friends as I grew up. But for the most part, I struggled along, thinking that everyone else felt the same way, and that you just had to keep going to get over it.
I know now that social anxiety is a common experience for Autistic people, perhaps especially for those who have been diagnosed later in life. Just as it sounds, social anxiety involves fear or anxiety in social situations, especially situations where the sufferer might be subject to judgment or scrutiny. Studies report varying statistics, but the prevalence of social anxiety amongst Autistics seems to sit around 50% (Spain et al., 2018). This is considerably higher than in the general population, where social anxiety affects between 5 -10% of people (Koyuncu et al., 2019).
When you understand the double empathy problem, this makes sense. According to the double empathy problem, Autistic people have difficulty understanding the communication and perspectives of neurotypical people, and neurotypical people have difficulty understanding the communication and perspectives of Autistic people (Milton, 2012). This results in mutual disconnects and misunderstandings on both sides — but because Autistic people are in the minority, we are often blamed when things go wrong. These repeated misunderstandings compound, and before long, you have a socially anxious Autistic person with a history of negative social encounters and rejection.
People might tell us that it’s all in our heads, but sadly, the fears that socially anxious Autistic people have may come true. A study of first impressions found, for example, that neurotypical people tend to react negatively to Autistic people, rating us as awkward or lacking in empathy (Alkhadi et al., 2021). Confirming the double empathy model, this only happened with neurotypical people — not when the people giving their first impressions were also Autistic. This suggests that differences in communication style are to blame. We may do things that other people don’t expect, struggle with figuring out what to say, and find it difficult to predict what our conversation partner is thinking or feeling (Spain et al., 2020).
I know what that feels like, far too well. And while I’d like to say that I’ve beaten social anxiety now, and that I’m no longer “painfully shy”, that wouldn’t quite be true. What I do have, though, is longer and longer moments without social anxiety. And a few more tools in my toolbox to pull out when things get bad. Here are some of the things that have helped me over the years.
Diagnosis
Diagnosis has been a game-changer in my battle with social anxiety. Like a lot of Autistic people, my social anxiety partly came down to a vague yet ever-present feeling that I was a Very Bad Person. I always seemed to miss how other people were feeling, or say things that were accidentally offensive, and I never could quite respond in the way that people seemed to want me to.
But when I got my autism diagnosis, I was excited to discover that I was just like the other Autistic people I had known and grown up with during my homeschooling years — the people I often secretly aspired to be. I wasn’t a bad person; I was just not attuned to the same things as neurotypical people. I noticed other things instead. This process of self-acceptance was facilitated by a formal diagnosis, but I think self-identification could have a similar effect. That isn’t my story to tell, but researchers Deborah Spain and colleagues found that an autism diagnosis improved social anxiety symptoms for many Autistic people, including some who were self-diagnosed (2020).
Feeling understood
As I was able to tell more and more people that I’m Autistic — which I did readily as I was exhausted by the strain of masking — I felt that their expectations of me changed. They seemed more willing to think twice about the things I did, and I now had a good reason to simplify my social calendar.
Looking at more of the research about autism and first impressions that I discussed above, things do seem to get better for Autistic people when others know we are Autistic. When Sasson & Morrison (2019) asked people to describe their first impressions of Autistic people shown in a video, for example, their impressions were much more favourable when they knew the people they were observing were Autistic. For all that talk about not labelling people, which I never got anyway, it seems the label actually helps us out a lot of the time.
Other Autistic people
Connecting with other Autistic people and sharing common experiences has made a huge difference, too. There is a kind of collective reframing that happens when Autistic people get together and tell stories; we come to realise that there is often a strong logic and meaning to the way we do things. For me, this has helped me feel surer of myself and less prone to changing myself to fit in and please others.
Simplicity and structure
For Autistic people, social anxiety seems to be worse with friends and family than it is with acquaintances and strangers (Chen et al., 2016). I’m not sure how other Autistic people feel about this, but it holds true for me.
I have quite a few less friends than I had at my peak social chameleon stage, when basically all of my energy went into pretending to be normal. But I have more friends than I did when I was a child and didn’t even know that friends were a thing.
When I do see friends, we go to familiar places. Places that are quiet and simple, like the park or the beach. We hang out for a short period of time, like an hour. We usually do the same thing over and over again, once every two months or so, sometimes for years on end.
The structure and simplicity that I’ve introduced into my life has helped me break out of social anxiety, just for long enough to feel other things instead. Anxiety used to be the only thing I noticed- it got stuck in my joints, buzzed in my head, and messed up my words. But these days, sometimes for the whole hour that I spend with someone, I can actually listen to what they’re saying. I can look at the clouds, which have always been my favourite, and I can say some of what I think. I’ll still go home and re-run the entire conversation in my head, but for that one hour at least, it can be fun.
Sara Meyer was diagnosed with autism not long after she started working alongside Autistic children as part of the Ministry of Education Learning & Support team. She wrote this article for the 2023 edition of the Altogether Autism Journal. Read More.
References
Alkhaldi, R. S., Sheppard, E., Burdett, E., & Mitchell, P. (2021). Do neurotypical people like or dislike Autistic people? Autism in Adulthood: Challenges and Management 3. https://doi.org/10.1089/aut.2020.0059
Chen, Y.-W., Bundy, A., Cordier, R., Chien, Y.-L., & Einfeld, S. (2016). The experience of social participation in everyday contexts among individuals with autism spectrum disorders: An experience sampling study. Journal of Autism and Developmental Disorders, 46. https://doi.org/10.1007/s10803-015-2682-4
Koyuncu, A., İnce, E., Ertekin E., & Tükel, R. (2019). Comorbidity in social anxiety disorder: diagnostic and therapeutic challenges. Drugs Context, 8.
Milton, D. (2012) On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27(6).
Sasson, N. J., & Morrison, K. E. (2019). First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism: The International Journal of Research and Practice, 23(1), 50–59. https://doi.org/10.1177/1362361317729526
Spain, D., Sin, J., Linder, K., McMahon, J., & Happe, F. (2018). Social anxiety in autism spectrum disorder: A systematic review, Research in Autism Spectrum Disorders, 52. https://doi.org/10.1016/j.rasd.2018.04.007
Spain, D., Yarar, E., & Happe, F. (2020). Social anxiety in adults with autism: a qualitative study. International Journal of Qualitative Studies on Health and Wellbeing, 15. https://doi.org/10.1080/17482631.2020.1803669
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