#EqualAccess Series Guest Post: Happy Birthday to an Autist
by Mette Harrison
This post is part of The Exponent’s #EqualAccess Series. Disabled voices rarely get a chance to speak for themselves, but this blog series seeks to eliminate the stigma that disabled people are less than, and need a representative to speak on their behalf. This blog series is intended to break stereotypes by gathering the voices of disabled individuals. #DisabilityExperience
The image below is a black and white photo of author (medium length dark hair), holding a locket with her arms partially folded.
Autism is often an invisible disability, and since my diagnosis in 2017, I’ve struggled a lot to unlearn the autism phobia and hatred that is part and parcel of everyday living in our world, including within Mormonism. I struggle with people who assume that neurotypical social interaction is the only “human” or “divine” way to interact with others and who impose on me both expectations that I act “normal” because that is what is “right” and who refuse to accept my differences while also insisting that I must accept their way of thinking and acting as always appropriate. They tell me in a thousand different ways that what is my default is wrong and is to be corrected and that I lack empathy when, in fact, they refuse to see my emotions or empathy because I express them differently (i.e. not with the same facial expressions of body language that they expect).
Because I’m what many would call “high-functioning” or “Asperger’s,” I’ve been able to “pass” or to “mask” my autism for much of my life. The cost of that has been tremendous: headaches, self-hatred, inability to leave the house, social anxiety and more. But let me start here with a quick list of the symptoms of autism I see in myself.
- Weird sense of humor/lack of sense of humor
- A host of sensory issues from clothing to lights/sound to pickiness with food
- Excessive precision with language
- Lack of understanding of social cues (I’m not trying to be obtuse or rude, but I read this way)
- Perception of me being “cold” socially, often related to lack of facial expression
- A tendency to take things literally—to not understand social communication (the result of this is often eye-rolling and people insisting I’m deliberately misunderstanding)
- Inability to see/understand body language (it just looks like a lot of arm flailing to me)
- Lack of social reciprocity in speech (this means people think I monopolize conversations)
- Intense interests that are considered socially odd (from Star Trek to Ironman for me)
- Clumsiness or other lack of sense of oneness between body and mind
- Women who appear masculine, men who appear feminine—a general lack of proper gendering. (especially difficult within Mormonism’s language about men and women having different, god-given, “natural” roles and the policing of women’s bodies in the actual church building to include skirts, dresses, hairstyling, makeup and more)
- Extreme introvertedness and/or social anxiety
- List-making or related OCD behavior
Just to make this easier to see in a concrete way, let me point to a simple custom that we have culturally and that extends to Mormonism (although there’s no particular religious reason for this): the birthday.
I hate birthdays. If you’ve ever listened to Sheldon on The Big Bang Theory opine on the topic of gifts, and how a gift is just an obligation, you have a sense of how I feel. And also how ridiculous it sounds (cue laugh track) when I try to explain to people that the best gift they can give me for my birthday is no gift, and also, please, pretend that this day doesn’t exist. Don’t mention it. Don’t wish me Happy Birthday. Don’t give me any attention please. That kind of attention makes me acutely uncomfortable.
I am always sure that I am supposed to put on a performance of some kind for my birthday, a performance of gratitude and happiness. I do not care to put on social performances in any circumstance, but in the case of birthdays, the stakes are high. Everyone is staring at my face, which I cannot get to make the right expression. I will always look angry, even when I’m not. And if I am angry, then that’s not allowed.
When I had been married about ten years, my in-laws gave me a gift of a big basket of perfumed products from Bath & Body Works. I was so confused by this gift. I literally cannot think of a gift that is less suited for me. Not only have I never in my life used perfumed products, but I detest them so much that I avoid the part of the mall that store is in because the smells are so toxic (sensory sensitivity is a classic symptom of autism and this is one of the ways it manifests for me). I couldn’t even open the wrapping on this gift in my house. I had to keep it in the garage before I regifted it to someone else.
I understand that my in-laws were trying to buy me a neutral gift that “all women” would like. Yet somehow, they had not yet figured out that I was very, very much not like all women in almost every way that you can think of. I tried hard not to be offended by this gift. I tried to take it in the spirit it was given. But this required a huge effort on my part, and again, it felt like an obligation and not a gift at all. The waste of money for token gifts is something else I don’t understand. Why not just give a card? I could get behind cards. Cards have words on them. I tell my kids to give me cards on Mother’s Day instead of gifts. I don’t like surprises. I don’t like dead trees from wrapping. I could go on.
My husband lectured me at one point about how I was setting a bad example for our children. We should be teaching them to say “Thank you” anytime they are given a gift, whether or not the gift is something they like. This is the socially correct thing to do. And yes, I am aware of that. I’ve been doing it for most of my life. But I suspect that the burden of doing this act that feels like it annihilates my soul is more taxing on me than it is on other people, and that the attention of birthdays is enough of an exchange for other people to still enjoy the ritual. But for me, the attention just makes it worse, sure as it is to lead to me being uncovered as autistic and “not normal.”
I remember at a visiting teaching interview, I was asked to make a goal for the next year of remembering the birthdays of the ladies I visited. This was very difficult for me to do because I hate it when my visiting teachers do this for me. I’m well aware of the fact that my visiting teachees may have a different experience with birthdays (I’m capable of empathy, you see), but I suspect I’m the last person who should be asked to do this because I’m likely to do a terrible job of the whole thing. Should it be a surprise? Should I ask what they want as a gift first? And on and on.
These days, I know that my Mormon ward will inevitably do something about my birthday. Every time I almost figure out how to explain that I prefer no birthday remembrance in Relief Society, the Presidency changes and there’s a whole new group of people I have to explain it to. This is complicated by the fact that many women perceive my protestations to be typical feminine modesty about not wanting a fuss, though it is not at all the same. But it would take a book to explain this and I’m still not sure they would believe me.
Relief Society at church will make me stand up (with people staring at me)—another social performance for me to fail at. Then there were will be more opportunities for me to fail as random people say “Happy Birthday” to me throughout church, and I’ll have to figure out what performance they want. Probably a smile and a “thank you.” Will that be sufficient or will I be expected to make small talk about getting old, as if that’s something that I care about?
There will be a gift in church from the Relief Society, too. If it were just a consumable like chocolate, that would be one thing. But it’s more often some kind of handmade spiritual reminder. A piece of wood that’s been painted with a scripture on it or something. Like, here, it’s your birthday, so we wanted to take the time to tell you that you’re not working hard enough at being a Mormon. Yeah, why do I hate birthdays again?
If you work in Primary, they’ll make you stand up with the little children and be sung to. All the eyes in the room on you. Again, I’m expected to be a “good example” of how to act when it’s your birthday. Why can’t I just take the day off from social performance expectations and just be myself? That would be a really nice birthday, let me tell you. But that is not what birthdays are.
Birthdays are another reminder of how I’m not neurotypical and never will be, and that trying to explain what I actually am is ignored in the “greater good” of telling me that God is neurotypical, an extrovert, and that it’s OK if I’m “disabled” now, because in the next life, I won’t be me anymore. I’ll be fixed and all my autism will be taken away and isn’t that wonderful?
Bio: Mette Harrison is the author of The Bishop’s Wife mystery series, The Mormon Sabbatical Podcast, Princeton PhD, fiction editor at Exponent II, and an autist.
“trying to explain what I actually am is ignored in the “greater good” of telling me that God is neurotypical, an extrovert, and that it’s OK if I’m “disabled” now, because in the next life, I won’t be me anymore. I’ll be fixed and all my autism will be taken away and isn’t that wonderful?”
<3 <3 <3
Thank you for explaining your experience, especially regarding birthdays. We have so much to learn from and about each other.
I’ve been listening to your podcast for a few weeks too… so honest. Thank you.
So much of your list and everything you wrote about is me….it’s a great comfort to know I’m not alone (I’ve, of course, been intellectually aware of this but this was gut real knowing it again). It was a true “gift” to me….appreciate it.
It just occurred to me that as a male in the church, I don’t ever recall my birthday coming up at all. Hmm.
This is amazing and so validating – it is nice to know I am not alone in so much of my experience, even without anything that qualifies me for a diagnosis. I really, really appreciate that you have such clear words to put to your experiences and opinions, so others of us can feel community on our atypical walks through life.
Thank you for putting this into words. It helps so much to hear your description of what seems to match some of my own experiences too. It was only a year or so ago when I told my wife: “Sometimes I feel like an autistic person feels” when I am supposed to enact some ‘social performance’ that is a ritual that I simply cannot perform without great discomfort. I want to be the normal me and not just a normal person who fits all the norms.
I have to laugh (or I would cry) about the comments from others saying how much they relate to what you say. Because, yeah, me too. My autism spectrum daughter tells me I need to be evaluated for autism but at my age, what’s the point. I know where I have difficulty, and many on your list apply to me. I also have had a frustrating time trying to explain something as simple as I can hear into higher frequencies than most people, so I can hear when the microphone is whistling or someone’s hearing aid is malfunctioning. Because they can’t hear it, they don’t believe that I can.
So, thanks for describing your experience. Apparently there are many of us.
Yep, me too. And my son (who does have a diagnosis). Every now and then the Primary will “invite” him back and continue to ignore me when I tell them that sharing time is essentially designed as a waking nightmare for people with sensory issues. I’ve spent most of the last year just spending time with him during the second hour of church, and it’s been good in many ways.
Love and hugs (or fist bumps, or non-eye-contact nods as you prefer) for everyone. (Also, hi Anna! I hear those things too!)