Did you know that most late-diagnosed people are diagnosed with at least one mental health disorder, often an anxiety disorder, before being diagnosed with ASD?

I was first diagnosed with anxiety when I was a junior in high school, and then depression when I was in my mid-twenties, but I wasn’t diagnosed as autistic until I was nearly thirty. In the meantime, I saw multiple therapists over the years who all used variations of DBT and CBT in trying to treat my anxiety. They assured me that mindfulness, coping mechanisms, and forcing myself through my feelings of discomfort would cure me.

The mindfulness and coping mechanisms were helpful, to a point, but I would always hit a wall where my therapist expected me to effectively “get over” my social anxiety, and I just didn’t. If anything, as my therapists encouraged me to go to new places and get out in public more, my anxiety got worse. Things would always come to a head when they started talking about exposure therapy.

The truth is, you can’t expose the sensory sensitivity out of an autistic person any more than you can stop them being autistic. Maybe these sorts of treatments are effective for non-autistic people, but, for autistic people, exposure therapy can have the opposite effect, even retraumatizing people.

What my therapists saw as an unjustified but extreme fear of any place outside of my home, agoraphobia, was, in fact, a learned traumatization from a lifetime of negative reinforcement that told me everything about the way I am was wrong. Exposure therapy assumes that fears are unjustified, that you’ve built something up in your head to be more than it is. The exposure shows that your fears are unfounded and teaches you that you don’t need to be afraid.

But the trauma of an autistic person related to social situations isn’t unfounded. From a very young age, we get repeated feedback from the people around us that we’re wrong or broken and need to change how we interact with the world.

We’re too loud or too quiet; we aren’t paying enough attention, or we’re paying too much attention. We don’t like the things we’re supposed to and like the wrong things too much. Worst of all, these criticisms, critiques, and punishments always came unexpectedly. We weren’t trying to be bad or misbehave. Usually, we’re trying very hard to be good. So when the reprimand came, it was a surprise attack, all the more cruel and unusual because it was so undeserved.

We learned that the only way to protect ourselves from such experiences was to avoid the situations where they happened. Situations with strangers or in unfamiliar places. Situations where we know there will be an expected behavior but aren’t confident we can replicate it.

Add to that the physical symptoms of trauma and the autistic mind’s predisposition to finding comfort in repetition and familiarity, and forcing ourselves into these uncomfortable situations becomes not just uncomfortable but downright detrimental.

When I go out in public, my whole body is tensed. My mind is on overdrive, trying to keep up with the input of information (autistic brains have been found to produce up to 42% more information at rest, suggesting we have more information to process). Trying to keep track of everything is basically impossible, and the effort is exhausting. After only a short time in public, the tension in my body results in physical repercussions. I hold the majority of my tension in my neck and jaw, so I get tension headaches and jaw aches. For days after, I won’t be able to fully rotate my head and experience excruciating neck and back pain.

And, of course, the more I’m exposed to such situations, the worse it gets. It takes surprisingly little exposure for me to start struggling with language. From stuttering and stumbling when I speak to forgetting words to reduce verbalization. When I get particularly overwhelmed, I begin to experience periods where I just can’t bring myself to talk at all. I hesitate to call this selective mutism because I could force myself to speak, but the effort is so extreme that I usually end up just texting people.

When I worked full-time in an office, this happened often enough that I would usually just message people, even in the same room. When I forced myself to speak, it was devoid of emotion, and I would need to pause to take a breath mid-sentence. It was like trying to speak with a ten-ton weight on my chest.

There are ways to reduce the amount of anxiety I experience when in public situations, but none of them look like what my past therapists were asking me to do.

Caring for myself in social situations can look like:

1. Bringing a safe person with me. This is someone with whom I am comfortable and feel safe and who can just be there with me. Having another person means not needing to be as aware of my surroundings (someone to watch my back) and gives me someone whose behavior I can mirror. Rather than trying to keep up with all the non-verbal cues in conversations with unfamiliar people, I can track how the safe person responds. Because they are familiar to me, their body language is easier to read. I don’t have to pay as close attention to unfamiliar information, allowing me to devote more energy to self-regulation.
2. Removing myself from crowded or loud areas. If I cannot remove myself from a stressful situation entirely, then caring for myself in that situation often looks like”being antisocial.” Going to an empty room at a party, mingling by the wall, going outside when everyone is inside, then back inside when everyone moves outside. My autistic brain isn’t capable of blocking out stimuli when they become overwhelming, so I need to take action to reduce those stimuli when they become too much.
3. Bringing tools to regulate myself. When I was a teenager, I brought music and headphones with me everywhere. First, walkmans, then my iPod. I would sit at tables with people having conversations with my headphones on and music blaring. As an adult, headphones make me feel too vulnerable in public, so I tend to bring things to fidget with or play games on my phone. It gives me something to focus on that I can control that doesn’t feel overwhelming. And, because I also have ADHD, it can be easier to listen to what people are saying when my other senses are occupied.
4. Opting out or leaving early. Of course, the best way to care for myself in an overwhelming social situation is to just not go in the first place. Now that I know I’m autistic, I’m working on being gentler with myself. I do not force myself to do things when they feel so overwhelming that even the thought of doing them makes me sick. It also means being okay with just “making an appearance” at certain events. Knowing that my best looks different from other people’s. Sometimes, I want to attend an event because it’s important to me or the people involved are important to me, but I know that it will be too overwhelming. Making a brief appearance has to be good enough.

These days, I have a therapist who is experienced with and knowledgeable about trauma and neurodivergence and understands how damaging exposure therapy can be. She also understands the importance of not doing and encourages me to take breaks. She understands how much more I have to do in my day-to-day life just to get by as an autistic person, and she’s very good at reminding me of this when I feel like I’m falling behind.

But the damage that was done when I was younger (both in therapy and before therapy) didn’t need to happen in the first place. If we as a society were knowledgeable about and accepting of neurodiversity, there wouldn’t be pressure on autistic children and adults to perform neurotypicality, and we wouldn’t be punished for simply existing. Then maybe we wouldn’t have so much to work through as adults, and, maybe, we’d even enjoy being in social situations more.

How many of the stereotypical traits of autism are actually just trauma responses that wouldn’t be there if we had simply been accepted? After all, autistic people seldom have trouble socializing with each other.