Temple Grandin is an internationally famous spokesperson whom I had never heard of. This is silly, because what she’s most known for is her advocacy for autistic people. I’m an autistic person. I first got diagnosed like 24 years ago. And I read books. Temple’s written fifteen entire books, largely about her experiences with autism, and I didn’t stumble across a single one of them until last year. She has a Wikipedia article listing all of the media in which she appears. Time, People, Discover, Forbes, and the New York Times, all of which I swear I read, have run features on her. There are Temple Grandin songs.
Somehow, I missed every single car on this train until a copy of Thinking in Pictures: My Life with Autism (2006 revision) appeared in my neighborhood’s Little Free Library. Then it sat on my nightstand for a bit.
Last Wednesday, I finally finished it. This might be the first book I’ve ever read by an autistic person. It’s certainly the first where that author talks about being autistic. The most immediate effect on me is that I feel less like I have to hide. You see, I usually don’t tell people I’m autistic. I rather thought people would dislike me for it. That would be in line with my past experiences.
People must like Temple. Despite that she bit other kids, had tantrums, spectacularly torpedoed multiple social encounters, got fired from jobs, constantly had to ask for extra help, and still seems to not understand certain lessons I’ve drilled into my head. She’s thriving. I feel some kind of way about that. Not the way you’d think.
First and foremost, I feel that she’s lucky, and I’m happy for her. But in a way that makes me want to cry.
I have spent most of my life trying (failing, often) to be as normal as possible. When I’m clocked as autistic, I immediately ask what gave me away, and take pains to not do that thing anymore. On several occasions where I’ve chosen to divulge that I’m autistic to maybe-friends, it has not gone well. “Autism” flips a switch in certain people’s brains that relegates the perceived sufferer to the Idiot Box— At best.
At worst, people have launched into diatribes about some other autistic person they know and why that guy is awful and they hate him (why would you do this?!), or flat-out told me I must be lying. Usually because it’s unthinkable that I, an autistic person, can make words with my mouth. Hurrah. Those are relationships I burn in a tin can for disposal. I have the ‘bad with people’ disorder, yet I still know to not do that kind of shit!
Probably my worst habit as an autist is lying about my feelings. I do this reflexively, because I was always in trouble for feeling the wrong way about things as a child. I will not admit to negative emotion with a gun to my head unless I have already thought through whether it’s socially acceptable to have the reaction I’m having. Thinking through is rather incompatible with the immediate experience of having a reaction. So I try to just not; I clam up. I cannot tell someone to their face that I am upset, or why. Instead, I start acting Weirder, they take further offense, I scuttle away to safety, and my perspective remains an obscure mystery.
This has led to situations where, for example, one woman with a crush on me thought I was ditching her in favor of another woman. The truth was that she had said several things I found very callous. I wanted to retreat, so I tried to use woman #2 as an escape avenue. This was not a good plan! It did not work! Only in retrospect did I realize (*I was told) that it looked like I rejected woman #1 because I had feelings for #2— Not because #1 had burned through my goodwill, while #2 happened to also be there and have a car. But #1 never knew she upset me. She came up with her own explanation for my behavior. I really don’t like what she decided. But I’d kept my mouth shut, so it became the truth.
(I prudently and deftly resolved this conflict by never talking to either of those women, or our mutual acquaintances, again. That’s sooo many potential friendships burned. Whoopsie daisy. But so it goes.)
In her book, Temple repeatedly says that she does not think autistic people experience ‘complex’ emotions. She likens her emotions to those of a child or an animal. That’s none of my business; it’s not my place to contradict her understanding of herself and the world. However, the dissonance I experienced hearing her views on this became a major takeaway. I absolutely experience complex emotions. (I can’t always tell you what they are, but give me ten minutes in a calm room to work on the puzzle and I’ll come back with something.)
That was what surprised me the most, reading her book— Temple and I are such different people. The perspectives she has on thought processes, intellect, emotions, rationality, relationships, and spirituality don’t align with mine. I assume that part of the difference is generational, and the rest might have to do with our respective diagnoses.
Temple’s initial diagnosis was brain damage, realized in her adult life to actually be autism, which she sometimes calls “Kanner syndrome” (a now-outdated term I had never heard before her book). Meanwhile, decades later, I would be caught out elsewhere on the spectrum, and diagnosed with Asperger’s. Temple was given extensive intervention by a concerned mother who made sure she was tutored, coached, supported, and trained to navigate the world and manage her symptoms. My mother put my diagnosis in a box. She later said I should’ve been diagnosed with bipolar disorder, since that’s what she’d already told the ladies at her new church. (I emphatically do not have bipolar disorder, or any of the symptoms. Sorry I didn’t really have a tearjerking mental illness you could score sympathy points with, Mom.)
I would not learn about my diagnosis until I found the box during a move, shortly before the Asperger’s label was merged with Autism Spectrum Disorder (ASD) in 2013. (I still remember how it happened: The box was open in the living room, with its contents spread across the piano and bench. The paper with my name and ‘Aspberger’s’ on it was propped up where sheet music goes. It was dated three years prior. This entire scene was baffling to me. It had to have been orchestrated by my mother, because we were on our way out of that house, so why spread all those papers around? Maybe she’d been hoping to upset me— That’s why she did most things. Maybe she wanted me to rail at her over this revelation. Well, I must’ve disappointed her yet again, because she’d already convinced me that I was broken, and I’d worked through being upset on my own. Having any label for the brokenness seemed inconsequential. Though later, when I learned it was a shared label, and there were millions of other people like me, I was ecstatic.)
I’m kind of glad that the diagnosis of Asperger’s wasn’t merged with ASD at the time I saw that paper, because it was down to 11-year-old me and Google to figure out what on earth ‘Asperger’s’ was, and why my mother thought it wasn’t a good enough diagnosis. I might not have recognized myself from descriptions of ‘classic autism’ any more than the people who later insisted I must be lying about having it did.
There is so much talk of how autism looks from the outside, particularly the ways in which autistic behaviors are disruptive and difficult for others. But early on, I’d internalized that I would be rejected if I caused anybody issues, so the ways I expressed distress departed from the stereotypes. Temple threw tantrums, built herself rule-breaking escape routes, and asked trusted adults for help. Meanwhile, I mostly just said thoughtless things that came across as crazy, or hid from other people, because trying to figure out what they’d think was crazy was exhausting.
Where Temple and I converge is our sensory perception. We both have issues with ‘scrambled senses.’ Additionally, Temple knows way more autistic people than I do, and reports their experiences throughout her book. Sensory problems seem to be the unifying theme across a broad spectrum of autism.
Understanding of autism has evolved way more in the past few decades than I’m prepared to discuss here. I will say that I fully sympathize with Temple’s frustration that the sensory issues angle was ever relegated to a secondary focus in research. It kind of seems like the biggest deal to me, and to her too. The information our senses report about the outside world is faulty and overwhelming. Especially for kids, who’ve got so much novel information about life to parse, can’t you see how getting janky sensory data, or struggling to interpret and integrate that data, would disrupt everything?
(Fun fact: When I’m in a conversation with someone new, it takes me more mental energy to ‘hear’ the words they’re saying. I’m not used to their voice, their turns of phrase, their speaking cadence, or their cues. I don’t have a script to fall back on for easy-effort answers. Do you remember your first time driving, before you built up muscle memory? Having to pay conscious attention to the gas, accelerator, turn signal, steering, all at once? Wasn’t that exhausting? Every conversation with a new person is like that for me forever. Consequently, my eyes ‘shut off.’ I exhaust my RAM on dialogue and stop being able to process visual data. Then I walk away with almost no recollection of what the other person looked like! Every goddamn time. I’m fully aware that I do this—it is noticeable when my vision fades—but I can’t change how my brain functions through force of will. What’s my line here? “Can we be quiet for thirty seconds while I stare at your face, to help me remember it later?” Noooo.)
For autists, certain everyday textures, sounds, and visual stimuli are too much. ‘Too much,’ for children, usually looks like a screaming meltdown. My preferred Adult tactic is to take an extra-long bathroom break. (Wherever you go, bathrooms are often the only place you can count on for some semblance of quiet. This is a great failing of modern life, imo.) Temple puts forward that the most severely autistic people are probably those who have the worst sensory processing issues, particularly with understanding the spoken word. We know that there are critical years for language development in early childhood. Kids that don’t get the opportunity to learn language look an awful lot like severely autistic kids who weren’t able to learn language the way their peers do: by listening.
Like Temple, I have trouble discriminating between pitches. She also writes about autistic people who took a long time to realize that speech conveys meaning through words, not just the tone. I had the opposite problem. While I found it challenging to discriminate between spoken words, I did even worse with tone. I was perpetually in trouble for taking the ““wrong tone”” of voice (an accusation that kid-me could not understand). I’d like to think that I’m better-adjusted as an adult, but I’m still usually the last person to realize when someone is upset. Tone is something I have to consciously tune into to figure out. I rely on applying rules I’ve memorized, because I have no intuitive sense for it.
This makes me somewhat impervious to ‘catching’ emotions in a social situation. This is a bad thing. It means I’m at least one step offbeat from everyone else, and the chilling alienation from a group that follows is something even I can’t miss. Despite this, and unlike Temple, I’ve managed to maintain romantic relationships. My spouses and I are coming up on six years together, in fact. I just needed to find people who put in as much effort to understand me as I put into understanding them. They get that I don’t like to be touched, so they leave it to me to initiate touching. They get that certain textures and actions are incredibly grating for me, so they don’t do those things on purpose. My husband does like to turn up music and sounds and lights and generally be a headache, but that’s why my space is a floor above his, and he very considerately buys me big bags of earplugs.
I’m lucky in my own way. I played through my early life on hard mode without a guidebook. Nobody I knew back then tolerated my autism. I became convinced that, to survive, I needed to achieve the impossible task of changing how my brain worked. Of course I failed, but I managed to craft a convincing mask. It’s very easy for me to imagine how devastated I would have been if my efforts to devise coping mechanisms amounted to nothing. My first husband complained that my personality kept changing. That wasn’t it; it was that I kept refining my expressions, tone of voice, gestures, speaking cadence, etc. I had to evolve a strategy for how to not push the buttons in strangers’ brains that set off their Weirdo Alarm. I’ve almost got it down now. More often than not, people understand me the way I want to be understood.
I’ve wanted to be understood as normal for years. It’s only recently, because of examples like Temple’s, that I’ve considered wanting to be understood honestly. This might be a strange place for a writer with four manuscripts under their belt to be in. But maybe I should put something more of myself in my work. Tell stories that incorporate this perspective, instead of trying to strip the autism away out of fear that it would be a barrier to entry for any audience.
I just need to convince myself that there are more people out there who’d want to understand me the way I want to understand them. Maybe we could meet each other halfway.