Unmasking Autism Diary #13: The Worst Question in the World
Read now (5 mins) | Alexithymia: from inside Angela's Autistic mind
June 20, 2023
Dear Diary,
Sometimes I avoid reaching out to people because I know they are going to ask my most dreaded question: “How are you?”
Of all the frequently asked questions in the world, this is my second most hated. (FYI My most hated question is, “Are you okay?” when asked right after I have fallen.)
“How are you?” brings an ocean of dread and a longing for my bed. Every time it’s asked, I believe this time will be different. I sense it coming, I shore up my resources like a double Dutch champion about to jump into the spinning ropes, “Just say, ‘fine,’ and stop there,” I coach myself.
And then I feel myself once again crash hard into the ropes as the ropes tangle around my ankles, and I steady myself to (hopefully) avoid falling. Usually, I back up and try to enter the middle again.
Sometimes this works, but sometimes I get so flustered I make some major social faux pas or end up looking rude. It’s so hard to stay regulated in these moments even though I have so much practice.
Autistic people are known for having difficulties with social communication. We are often called “weird,” and the common Autistic aversion to eye contact, or default to bluntness and raw honesty, comes up.
What’s less understood is why this is.
There are lots of reasons, and I’m not going to address them all here, but I do want to talk about two challenges I face with the way my Autism shows up for me. (Note: Every Autistic person is a unique individual with a different set of traits and experiences).
The reason, “How are you?” is such a horror show of a question for me starts with something called Alexithymia, and mine is pretty intense. (About 70% of Autistic people share this trait to varying degrees.) Alexithymia works kind of like face blindness but for emotions. You just go blank. It’s like there is absolutely no access to that part of your brain. It’s not that I don’t feel happy or sad; it’s that I can’t access any feeling-based information when you ask.
I remember starting therapy, and for at least the first year, the therapist would ask: “How do you feel today?” and wait for my answer.
That was usually half the session.
Just us sitting in silence, waiting for me to be able to identify an emotion. It never got easier—but I did get faster at lying.
This was a decade and a half before I was diagnosed Autistic, and my therapist didn’t know why the question was so hard. She was very patient, and I’m sure she thought she was being helpful. For my part, I began to memorize long lists of feeling words so I could pick one and sound authentic.
When I was first diagnosed as Autistic, I did a few sessions of equine-assisted therapy that really helped with this. Horses are super sensitive. If there are bad vibes, they are out. A horse is not hanging out to see what happens. Doing the horse work helped me externalize my feelings. Especially feelings of danger.
Because of my alexithymia, I go completely non-speaking or echolalic under stress. So, the further along I go, the worse my situation gets. I learned for self-preservation, I have to recognize danger early and bail.
Through the horses, I found this tiny weird thing that happens with my hamstrings, way, way early at the first sign of danger. I know that feeling in my hamstrings means, “I feel unsafe and need to leave,” even though I don’t actually FEEL unsafe or want to leave.
I’ve proven the theory out enough times now that at this point when it happens, I know to just exit. I usually say, “This is going to sound weird, but I have learned to trust my instincts, and if it’s not a, ‘Hell yes,’ for me, ‘It’s a no,’ and I’m just not getting that, ‘Hell yes.’ I’m so sorry, I’m going to pass/leave/go home/head to bed/whatever.”
I hung out with Alex Plank, the Autism advocate who founded the website Wrong Planet, once, and he has an autism service dog. The dog was trained to do the same thing. He would paw at Alex if he should bail or emotionally regulate himself. So cool!
For me (and maybe for everyone? I’m not sure), my Alexithymia is connected to my poor interoception. And that’s the second reason the, “How are you?” question is so painful for me.
Ever since I can remember, people have commented on how big my bladder is. It was a weird source of pride for me to be able to go all day without going to the bathroom. twelve hour flight? No worries, I won’t need the bathroom. 4-hour play with long lines? No worries, I’ll make it.
Turns out it’s not so much a massive bladder but instead…Autism.
Interoceptive functions help a person to know when he or she is in pain, hungry, full, tired, ill, or… wait for it… needing to use the restroom. And my interoception, frankly, sucks.
I think part of how people know the answer to, “How are you?” is that they have access to two pieces of information I don’t have as readily:
The physical sensations in their body (interoception).
The ability to describe their feelings. (So, not Alexathymia)
Now, I do know the “answer” to the question.
Q: How are you?
A: Good, and you?
But instead, what happens when I’m asked is that it triggers a body scan, I come up blank, it feels like I’m under a police searchlight, I go into total panic, and my mind is erased Men in Black style, and then I often say something impulsively, disclose too much information, or make some other tragic social error. And because I’ve done that so often, there is also a trauma response to manage. So frustrating!!!
I try not to put myself in the situation, but this means I tend to isolate just to avoid this question.
I’m sure you are thinking what my teenager tells me: “Mom, it’s not that deep.” And I do GET that.
Just say, “I’m fine.” and move on, I tell myself. But what if “I’m fine” is the wrong answer? I don’t want to be caught in a lie. I don’t want to lie! Am I fine? How would I know if I’m fine? And what if I say I’m fine, but later in the conversation, something else comes out where it’s clear I wasn’t fine? I want to be accurate in my answer.
So I try something non-committal like, “As well as can be expected,” or, “Good, I guess,” or something macro like, “Considering gun violence rates in America and the impending end of a habitable planet, but I guess I’m alright.” But those answers always beg another discussion I didn’t intend to have!
One of the other awesome traits of Autism (and trauma) is being able to game out infinite scenarios of what will happen based on how I respond. If you watched the Queen’s Gambit, you’ll remember her gaming out chess moves in her head obsessively. That’s what it’s like, ‘over here,’ all the time.
I just want to have an easy answer to this question that works for me and allows the conversion to naturally move forward.
If you ask me what I’m doing today or what I did yesterday, I’m good. I have those answers.
So, in the spirit of unmasking Autism, when I see the double Dutch ropes spinning, and it’s my turn to jump into the middle and answer, “How are you?” I’m going with “Actually, I don’t know! Ask another question, and let’s see how I do with that one!”
***
The Dear Diary Project is a public journaling project where I’m publicly sharing my diary entries as part of my annual goals. No harm is intended by these posts. My goal is to gain clarity for myself and hopefully help others, especially autistic adults, who are trying to make sense of the communications challenges we face.
“Masking is a common coping mechanism in which Autistic people hide their identifiably Autistic traits in order to fit in with societal norms, adopting a superficial personality at the expense of their mental health. This can include suppressing harmless stims, papering over communication challenges by presenting as unassuming and mild-mannered, and forcing themselves into situations that cause severe anxiety, all so they aren’t seen as needy or “odd.”
—Unmasking Autism, Dr. Devon Price
*Background note: Most people only have a vague (often, highly stereotyped) version of autism in their minds and believe that autistic children need ABA therapy to "overcome" their disability and appear "normal." After receiving an autism diagnosis in her thirties, Dr. Angela Lauria realized that she too had been mostly unaware of what it means to be Autistic. Like so many people, she started her journey by first gathering information and resources from the omnipresent (and problematic) Autism Speaks, but eventually moved away from the 'autism community' in favor of the 'Autistic community,' where she found kinship with other Autistic individuals and learned to let go of pathologizing language like 'Autism Spectrum Disorder' and 'Asperger's Syndrome.' This autism blog (and her autism podcast, "The Autistic Culture Podcast") is meant to share her lived-experience insights to support others on a similar journey of diagnosis, understanding, and community. Embrace Autism--differences are not deficits.