The Autism Spectrum According to Autistic People

Autism neurodiversity
Autism neurodiversity

Love, Loss and Mandarin Orange Chicken: How I Broke Up With Trader Joe’s

In February of 2021, I attempted to shop at Trader Joe’s. It was the first time since The Incident five months before, an event so profound it deserves capital letters.

A greeter gave me a disinfected cart and, COVID mask firmly strapped on, I strode inside. The Fremont, California location was moderately busy, and I zipped about gathering items in my cart, trying to ignore the growing feeling of dread.

Then I froze. I just stopped cold. I left the half-filled cart in the aisle, walked outside, and leaned against my car, breathing hard through the mask. My heart was racing. I flipped off the store, middle finger raised in the air, got in, and drove away.

I will never return. I know it the way I know if a mango is ripe.

This is a story of romance that met an untimely end. Trader Joe’s has a special place in my heart, much the same way an ex does. The memories are cherished, but they are no longer a welcome part of my life, and I’ve cut all ties on social media. It’s a tale of bitterness, frustration, legalities and judgment.

When a privately-held company chooses—in a conscious, decision-making process—to refuse to accommodate its disabled shoppers, who loses? Is it the consumer, who can no longer purchase items and take part in the shopping experience? Or is it the store, which loses out on tens of thousands of lifetime dollars per customer?

Certainly there are no winners here. 

***

I was in love. To say that I was a loyal customer of Trader Joe’s is a bit of an understatement. Those of us with what used to be called Asperger’s Syndrome—now enveloped under the heading of Autism Spectrum Disorder, or ASD—have unwavering loyalty.

My history with the company is lengthy, spanning decades. As a teenager, I would walk around the store with my very own cart, a first breath of independence, to spend carefully hoarded cash. It was amazing how much you could buy for $20 back in the early 1990s.

When I moved to Albany, New York, in my thirties, I craved Trader Joe’s so much, yet they didn’t have it yet. Not only did I join a social movement with the explicit purpose of bringing TJs to the Capital Region, but I would drive two-and-a-half hours—each way!—to shop at a location in Hadley, Massachusetts. My family knew I loved Trader Joe’s to the point that my brother got me a TJs gift card for Christmas one year.

I started shopping the Trader Joe’s in Castro Valley, California, when I moved to the Bay Area in 2012. It was my home store. Every few weeks I would pay a visit and drop a hundred and thirty bucks, buying organic dried blueberries and their famous Mandarin Orange Chicken.

I searched shelves in vain, fuming, when the company discontinued its heavenly cinnamon-vanilla holiday tea. I would sometimes see coworkers or friends at that store, and always said hi. I even got to know the staff pretty well.

And… they got to know me, too.

***

The first troubling incident happened in 2018 when a cashier became verbally aggressive with me. I left the store that day feeling nauseous and victimized.

As someone who is sensitive to ambient, arrhythmic sounds—such as the dinging of a cash register or the whining of a toddler behind me in line—I use ear protection. Noise pain is less a stabbing or aching, and more a miasma, agony that sticks around like the smell of burnt tomato sauce.

After a lot of trial and error, I have a great system: squishy earplugs rated at least 33 decibels, atop which are headphones intended for construction workers. I try not to take off the ear protection unless there is a genuine emergency, as my wellbeing is important and I have self respect, damn it.

If anyone tries to talk to me, I read lips. If I’m looking the other way, though, I’m effectively deaf. It also means that I go about with bright red headphones on, marking me as “other.” A target painted on my back.

Also, I have an agreement with myself. I have the right to be autistic during my off hours.

You see, it’s extremely important to be able to function. For those of us who are just disabled enough to be different but not infirm, it is a daily struggle. American society systematically favors those who have a similar brain structure and punishes those who don’t.

Autistics who are unwilling or unable to compromise are shunned, hated, feared, and aggressively pushed to the edges of society. Employment is always a concern—we are either outright fired from our jobs or the first to be handed a pink slip.

For those who have racism working against them as well, such as the late Elijah McClain* or Matthew Rushin, it’s not unusual to be murdered or imprisoned for being autistic or for not fitting in to the status quo. The neurotypical world is not our home, and we don’t fit or belong there. Even if we forget this for a single moment, others remind us on an hourly basis.

*Elijah McClain was not diagnosed as autistic. But, he was targeted for being Black and different— a mood Gemini, in his own words— and flapping his arms happily to the music in his earbuds.

Therefore I must keep my job, first and foremost above all other considerations, and as a professional I should be… well, professional. I interact with over a thousand people a day at work, and am therefore required to wear a metaphorical social mask in order to fulfill my obligations. Autistics call this “masking,” and it’s an essential tool for getting by in an unappreciative world. In other words, I become a fake neurotypical to the best of my ability.

And then, on weekends and evenings, I take the social mask off. To the outside eye, that’s when I become much ruder. I don’t read social cues, I speak too loudly, interrupt people, and have strict and unerring routines. I favor businesses that feature signs with pictures so I can clearly understand what is expected of me during transactions. When it comes to strangers, even helpful ones, I just want to be left alone. This includes when I’m shopping at the grocery store.

Needless to say, my behavior shocks people. These days I look like any other middle-aged, balding, overweight white guy, so unconventional behavior is instantly considered to be my fault and worthy of punishment, or at least outrage. 

For example, when an elderly woman dressed for church is behind me in line at the store, and she says something like, “I see you’re buying very healthy things! You have kale and milk, you must be trying to lose weight,” while smiling and attempting eye contact, my response to this is… um. Let’s just say, less than polite. 

In fact, I have taught myself to look at the center of her forehead, not in the eye, and say, “Pardon me, but what you are doing is called forced rapport, and I don’t have to participate. I just want to buy my things and leave.” Then I turn my back and ignore her verbalized bewilderment from that moment on.

Why do I act this way? Because I don’t want to put on the social mask and smile all the time. I don’t want to be forced to make eye contact. It takes too many “spoons,” and I need that energy for work. I’m sure her small talk was just trying to be nice, but I don’t play neurotypical social games in my off hours because I shouldn’t have to.

Fast forward to 2018 at Trader Joe’s. I was at the cash register bagging my own groceries, which takes fast hands and concentration. I have a system for bagging based on how I put groceries away at home. In the end, everything boils down to logistics, and executive functioning is survival.

Something seemed wrong, though—the groceries had stopped coming. I glanced up to find the cashier frowning at me. Glaring, actually.

“I said, did you find everything you’re looking for?” This time I heard him through the earplugs and headphones.

I shrugged. I didn’t want to talk. My patience was limited, the store was crowded and noisy even at 8:30AM, and—despite ear protection—it had become a physically painful experience, as it often is. 

We reached the point in the transaction when the cashier finished ringing me up. Typically this is when the cashier finishes bagging so I can pay. Not this guy. He continued glaring pointedly at me, arms crossed. My discomfort was mounting into physical agony, to the point of being overwhelming, and he was… doing nothing. After he handed me the receipt, we had a staring contest that seemed to last forever. Oh god, why so much eye contact? I wilted under the intensity; male dominance displays are the worst.

“Are you going to finish bagging?” I said at last.

He looked like he wanted to spit. “I don’t know, am I? You are one weird dude.”

I could have laughed because I am, of course, but the pain was growing unbearable. Under his stormy gaze I finished bagging, cheeks hot, and beat a retreat with my hundred and thirty bucks worth of Orange Muscat Champagne Vinegar, pastrami-style lox, and Israeli Feta.

There is a kind of hurt that I like to call social pain. When you’ve been rejected and bullied all your life, you become sensitive to certain things. A favorite professor of mine was once taking data on a first grader on the autism spectrum. My professor wanted to know how many times per recess the boy would turn down overtures of friendship and play from his peers. It turned out the answer was: none. The boy couldn’t take part in what was never offered. Instead he wandered from group to group, attempting to socialize, interact, and make friends… and was thoroughly ignored.

Children can be cruel, of course. They are very blunt in their opinions, but then, they learn those things from adults who are more subtle with their cruelty. 

Yet here I was, an upstanding, loyal customer of Trader Joe’s who spent a lot of money on a regular basis. Of course I called to complain as soon as I got home. The manager was personable and seemed to understand the issue. I sighed in relief and went on with life.

The next incident happened a few months later. I was getting weird looks from the cashier even before it was my turn in line. The bright red headphones are super obvious, of course, so I’m used to getting double takes and recoils. It wasn’t the same cashier as before, though. I had been very careful about avoiding his line, trying to stay safe.

Except the interaction was very nearly the same as before. This time I did hear the new cashier—yelling?—at me with some kind of innocuous, small talk-y question, which I ignored while bagging at top speed. Then came the time to pay, except he hadn’t pressed the correct button to allow me to do so.

I looked at him reluctantly. Glare, glare. His arms were crossed. I could do nothing but wait uncertainly, debit card in hand. I wasn’t here to argue, I was here to pay and take my groceries home. What was the problem?

He said, “I don’t have to take this shit. I’m going on break.” Then he walked off. Literally, he went to the customer-service desk, then disappeared toward the back of the store.

Um? I stared at his retreating back, card still in hand. I’d missed something, and didn’t know what.

A few helpful store employees rushed over to ring me out and help me finish bagging. This time I went to the customer-service desk and made sure to get the name and hours of the next manager on duty before leaving.

Maybe this guy was a friend of the other one? They must have been talking about me, and had reached their own conclusions. I was severely shaken, but decided to be more than nice. I put on my metaphorical, professional social mask to complain over the phone. I was all smiles, though the manager couldn’t see me.

“It’s my understanding,” I said halfway through our ten-minute chat, “that your employees could really use some professional development training on how to treat neurodivergent customers. I have two masters degrees and used to do adult trainings for a living. I could pull together a half-hour talk with a PowerPoint for your employees, including group exercises and a discussion afterwards.”

The manager was clearly taken aback. After a thoughtful pause he said, “I appreciate the offer, but corporate probably won’t allow us to do that.”

Undoubtedly not, but would he take the hint? The phone call ended on a congenial note with the manager saying he’d like to meet me someday. “Maybe,” he said cheerfully, “the next time you’re shopping I’ll tap you on the shoulder and say hi!”

My smile slid from my face, and I began breathing faster. “Thank you, but that would really hurt. I’m sensitive to physical touch, and if it happens unexpectedly, it’s downright painful. I would jump a foot in the air, and might have to take a sick day afterwards.”

“…Oh.”

This is no joke, by the way. Before I learned how to manage my disability, I took a lot of sick days due to sensory overload, which looks like short-term mononucleosis. It still happens, but I’m usually able to time it so my bad days are on the weekends. I lie in bed for hours, bound by cloying, dreary exhaustion. It’s awful, and I don’t envy anyone required to stay in bed all day because it isn’t fun or relaxing. My teeth clench just thinking about endless, unproductive time. 

The manager had been a good listener and promised nothing of the sort would ever happen again. Surely I’d solved the problem. Things would be fine now. Right? 

***

COVID-19 hit. Everyone’s routines were severely disrupted; for someone on the spectrum, it felt especially personal. On March 13th, 2020, all employees at my workplace were sent home for what was supposed to be a limited, three-week period to “flatten the curve.”

In a burst of intuition, I hauled all my plants home that day, including a giant ceramic pot filled with Devil’s Tongue and variegated Pothos. The custodian—one of my favorite people at work—cracked a joke when I borrowed his hand truck to complete the task, but… it wasn’t funny. Being sent home felt too much like being fired, and though my cognitive mind kept reassuring myself that everything was fine, my emotional self was unnerved.

We all know what happened next. We lived it. Grocery shopping became a nightmare. The rules changed too quickly—it was hard to tell, from one week to another, what would happen. Would there be a line? Would anything be left on the shelves? I started wearing sunscreen to do shopping of any sort, and my bright red headphones vied for space with a sunhat to stand for hours outside, exposed to the elements. 

Trader Joe’s was a leader during the early days of COVID. They were the first to implement certain practices, such as offering disinfected shopping carts.

In eco-conscious Alameda County, where paper bags cost 10 cents a piece, they gave them away for free in order to keep potentially virus-ridden, reusable bags at home. The days of bagging my own groceries were over. There was an “x” marked on the floor in front of each cashier’s station to show where customers were supposed to stand to keep employees safe.

Trader Joe’s implemented a Senior Hour a few days a week, including Sundays, my grocery shopping day. Senior hour interfered with my rapidly fluctuating schedule, but I was fine with it. The experience was like being at war; we did what we had to in order to survive, and we paid a price to keep one another safe.

Then things began to relax, at least a little. The numbers of dead and dying dropped as the summer of 2020 wore on. Trader Joe’s began letting younger people into the store along with the elderly customers during Senior Hour, which meant I didn’t have to wait to do my shopping. I could just get it over with and go home to chores, not spend hours baking in the sun.

Other matters devolved, though. Work grew busy as software platforms were purchased so we could function remotely, and my schedule became frantic, drawn into twelve-hour days without a break. It was wearying, non-routine stresses laid atop the pandemic. 

I kept up with the grocery shopping, trying to retain some measure of normalcy. Why didn’t I just get them delivered, like so many others? The trouble was, everyone was calling for groceries. I found that by getting up excessively early, I could beat the rush and buy essentials without having to pay high delivery fees or waiting for an opening in the calendar. Plus, the earlier I went, the fewer people there were to stress about.

Then came The Incident. This time it wasn’t a Trader Joe’s cashier who was the aggressor. It was me. I was the one who became aggressive.

***

I arrived on a Sunday morning eleven minutes after they’d opened. The fires had recently died down, and I was confident things would be okay. The morning rush to get into the store was undoubtedly over, and I would be let in to Senior Hour just like any other week. Only… there was a line. Blinking, I claimed my position. It had been a while since this had happened, and I wasn’t wearing sunscreen. The wait would be short, I reasoned.

Except it wasn’t. 

I sat with my phone, back to the rising sun. The line grew longer and wrapped around the corner. No Trader Joe’s employee came out to explain what was going on. Twenty minutes turned into half an hour. A couple of line dwellers began griping with one another. I couldn’t hear due to the headphones, but I could interpret the tone well enough to know they were upset, too. What was going on? 

We watched elderly customers make their way toward the door around the corner, out of sight. We even directed older looking customers away from the line so they wouldn’t have to wait. Then a young couple went into the store. Sure, the woman was visibly pregnant, though the man accompanying her wasn’t. But okay. Why not? 

Then, forty-five minutes into the wait, a bright red Mercedes convertible pulled up a few feet from where I sat slumped, sunburning. A woman emerged. Her hair flowed, she had fashionable shades on, and she held an expensive cell phone. Maybe in her early fifties, her face had an aquiline structure; she looked like someone who dieted and exercised rigorously. She breezed toward the entry where the elderly patrons had gone, vanishing around the corner. I waited, incredulous. A while later she emerged with a bag of groceries and peeled out.

I asked the person behind me to hold my place in line and went to investigate. The entrance for senior citizens was manned by a young employee. I held back, watching, as he admitted customers. The process was very simple—he looked at them, smiled and let them in. No ID check. He didn’t seem to be excluding anyone.

In other words, the line was a sham. People were self selecting. Those who knew it was Senior Hour were waiting with patience and courtesy. On the other hand anyone who felt assured that the line didn’t apply to them didn’t wait. And they didn’t have to.

I approached the nice young man at the door, and… totally lost it. I yelled at him, and his cheerful, friendly face crumpled. I hadn’t meant to get angry, but once I started I couldn’t stop, babbling about the unfairness of it all. With great effort, I cut myself short and retreated back to the line. I told the fellow customers what I’d witnessed, then sat on the pavement, simmering.

In retrospect it was a meltdown. For autistic children, meltdowns often involve screaming and crying. My meltdowns tend to be invisible to the naked eye as I am a responsible adult who has to live in society regardless of what’s going on.

The last one I had was at work during a meeting. I’d attempted to crack a joke and said exactly the wrong thing. People stared at me, and I looked down at the desk, mortified. The meeting continued around me, but inside I was a furnace. It’s akin to having your brain melt into glass, fissures opening and closing as magma erupts. During the last volcanic eruption in Hawaii someone posted a video of lava enveloping a Ford Mustang. A meltdown feels that way—inevitable, destructive, and gloopy, your brain on fire as expensive things melt.

Apparently the young employee had gotten help, because a manager came out to talk to the line. At last. 

He said, “Only seniors are being let in. The Senior Hour was cut last week from three days to two, so everyone is crowding into fewer days. We have a limit of 50 people allowed into the store at a time.”

We protested. “What about the pregnant couple? What about the woman with the red Mercedes?”

“I don’t know anything about that,” he said.

I burst out, “Where are signs telling who is okay to be let in during Senior Hour and who isn’t? Where are the visual cues?” As an autistic, such things are super important. When I can’t read social cues, I rely on signs to tell me the rules.

“There’s a notice posted to the website.” 

Does anyone really check a grocery store’s website before shopping? Seriously? I was beyond incised. “Look,” I said. “I have a neurological disability, but I’m out here waiting while some rich lady can just waltz into the store without a problem.”

It’s been my experience that when I bring up my disability during a conflict, I’m automatically positioned to lose since people see it as an emotional argument rather than a logical one. I needed to cool down, but my indignation and outrage couldn’t be stifled.

The manager looked at me. “Oh, then you can come in, too. We help people with disabilities.”

“You do?” I looked up the line and down it. These were people I’d stood with for an hour. They were patient and courteous, awaiting their turn. I couldn’t accept his offer because it just wasn’t fair. The system was corrupt. 

Then I blinked. “Where does it say that you allow people with disabilities to come into Senior Hour? Also, what kind of ID or proof do people have to show at the door?”

“None. There is no proof.”

“Ooookay. So how are people supposed to know? What kinds of disabilities are you talking about? I don’t use a wheelchair or a walker. I’m not blind or deaf. I can shop on my own without an assistant. How are these things defined?”

He was getting impatient. “Look, you can come in, all right?”

“No, I’m good.” I looked at my phone, effectively turning my back on him.

About ten minutes later we were let into Trader Joe’s, trickling in a few people at a time. I shopped. I had to—they had me over a barrel, at least temporarily. I had already endured the physical and emotional equivalent of a marathon. To seek out more lines, crowds and drama at another store would be agonizing, well beyond my endurance. 

After packing groceries into my car, I returned to the store. The line still wrapped around the building. I walked the perimeter slowly, seeking visual cues that referenced their system. Anything. There was a tiny sign hidden by orchids for sale with a few words about Senior Hour, though there was nothing about people with disabilities. Time for yet another conversation with the manager.

“This isn’t right,” I told him at the customer service desk. “Why are you allowing people to self select? Why aren’t you more explicit, or at least checking IDs?”

The manager’s face was closed. “No. We’re not going to do that.”

I went home, put away groceries, and checked their website. There was a tiny notification, though I had to search many pages to find it. It did say that Senior Hour included people with disabilities, but wasn’t explicit.

The Americans with Disabilities Act, called the ADA, was first passed in 1990 after a social demonstration where people left their wheelchairs to crawl up the steps of the United States Capitol. “I’ll take all night if I have to,” Jennifer Keelan, an eight-year old with cerebral palsy, told the press as she slowly drew herself up the stone steps.

It worked, as nonviolent social movements sometimes do. The legislation passed. But when you look at Title III—the part that addresses privately-held companies—it’s filled with court cases that lead off with words such as “failure,” “refusal,” and “must comply.” Strong-arming corporations is a full-time battle taking place within the court system. It’s expensive, and victory is never assured.

I wearily plowed my way through the customer-complaint process with Trader Joe’s. Phone calls were required to fit into my insane work schedule. The woman I reached at the corporate headquarters was sympathetic, but urged me to talk to a regional manager instead, implying that nothing could be done unless I spoke with him. So I left my number.

The regional manager called at nine o’clock on a workday I knew would be eleven hours, minimum. “Could you explain the problem in detail?” he asked.

I was out of patience, emotions flattened by my workload. “I was very clear with the woman from corporate. I spoke with her for twenty minutes. Don’t you have her notes?”

“Yes,” he said quickly. “But maybe you could tell me in your own words what changes you’d like us to make?”

“Have clear signs posted with both pictures and words. Be explicit on your website, and check IDs at the door if you’re going to have this sort of policy. Have an employee regularly communicate to people standing in line.”

“Maybe you should talk to the store manager…”

“I did.” I was being given the runaround. “Look. You can choose to be a company that is friendly to all disabilities, including neurological ones, and train your staff along those lines. Or don’t. I’ve spent a great deal of time talking to you guys about this already. Now you want more of my time. I’m a customer, not an employee. You really need to figure this out on your own.”

“I’m afraid I’m still unclear as to what the problem is.”

And he was. That was the kicker. 

An overseeing manager at the Castro Valley Trader Joe’s did call a week later and left me a voicemail, saying she’d been on vacation. Her tone-of-voice sounded amused, as if she was looking forward to an entertaining circus act. I was exhausted by the whole series of events, but called and left her a message at the customer-service desk. I never heard back.

The Mandarin Orange Chicken in my freezer lasted an unprecedented six weeks. I’d lost my stomach for it. Not long ago I ran out of Lavender Dryer Bags. That’s okay—I can live without.

Oh, and when I go to a grocery store these days, I am careful to wear my metaphorical, social mask along with the COVID-19 one. You should see me smile and be nice to the cashiers. I thank them repeatedly for their service as if they were military veterans. It’s just one more freedom gone, the neurotypical world eating me alive.

It’s bitter, but then, break-ups usually are.

***

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2 Responses

  1. This is why I hate living in the North Korea of the Western Hemisphere (aka Kalifornia) led by Kim Jong Newsom. His draconian lockdown made grocery shopping hell. Newscum and his fellow dictators claim to care about minorities like us autistics and people of colour like me, but they obviously don’t. I always order delivery on Instacart because I’m unable to drive and I don’t like having to deal with long lines and other harsh arbitrary restrictions on movement. The problem is my parents are trying to force me to go to inside the store every time now and I’m too afraid to tell them why I don’t want to. Also, I do not like how you appear to support masking and pretending to act neurotypical. You’re making the problem worse.

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