I no longer recall exactly how much a modest funeral and burial in my hometown cost in 2009. I just know that it was exceptionally more expensive than an assessment for autism at a private mental health center. 

I remember doing that math in the waning moments of what I now recognize as a meltdown. 

I’d always had what I used to call “episodes” for lack of any better terminology. Moments where some seemingly tiny thing would set me off and leave me unable to understand or manage my emotions. Or times where the smallest mistake could send me spiraling into self-loathing. But this one, a few months after my 27th birthday, felt different. Scarier. 

I’d made a small mistake a few hours earlier — little more than crossed wires and unrealized lunch plans — and lost my shit. No one was angry or even annoyed with me, but I was honestly convinced that I should die to pay for my failings. And with no better options apparent to me, I was working up the nerve to take care of the matter myself. 

Somehow, before I could settle on the means, I managed to reach out to my mom. Somehow she’d managed to talk me down. When we were through the worst of it, she kindly added, “I think it’s time that we started seriously pursuing testing.”

“I can’t afford it,” I replied.

“We’ll pay for it,” she said.

“You can’t afford it,” I snapped.

Mom insisted that she and my dad would figure something out. “Whether you are or you aren’t, it will help us to know what we’re working with here.”

I wasn’t entirely sold on this idea. I desperately wanted the guidance and awareness she was talking about. But not as much as I wanted to spare my beloved parents the burden of some medical expenses. Just because I didn’t think that I deserved to die anymore didn’t mean that I thought I was worthy of their help. 

So I crunched the numbers and came to this conclusion: If testing could clarify what was going on with me — and what I might be able to do about it — then there was a slight chance my mental state could improve. If it did, then maybe I could spare them the greater expenditure. 

I was 27 when I was finally diagnosed with autism. By that point, I’d wanted an assessment for five years and needed it for at least 20 more. There are a number of crisscrossing and snowballing reasons why it took me so long to get there. 

There was nothing particularly hidden or unique about my autism when I was growing up. Everything from my sensitivity to getting my nails cut to my inability to navigate shoelaces to my overly formal manner of speaking to my all-encompassing interest in the Titanic were textbook symptoms. I simply never encountered anyone in my small hometown in the late 1980s and early 1990s who knew enough about autism to know what to look for — or that they should be looking for it in a girl.

The general consensus among education and medical professionals and anyone else who felt the need to weigh in seemed to be that … I was smart. I was different because smart people are eccentric. I was struggling socially because everyone was jealous of how smart I was. It would all sort itself out when I got to university and found my kind. 

That was not the case. That is not what happened.

As general knowledge about autism (slightly) improved, resources became my next hurdle. I am extremely grateful for the publicly funded health care that I have in Canada, but I am also aware of its major limitations. And I am painfully aware that those limitations include almost any meaningful or accessible support for autistic people over the age of 18. 

Canadian health care can be wonderful if you have a recognizable ailment with a relatively straightforward treatment. Whether I had a simple bacterial infection or a life-threatening viral illness — or even a seizure in the middle of sex-ed class — the process was simple and accessible. I saw my doctor. I got whatever testing I needed, including referrals to any specialists I might require. Based on the results, I received whatever treatments and prescriptions I needed, with follow-ups as necessary. 

Anything less definable than that becomes more hit-and-miss in terms of quality and coverage, especially when it comes to something related to mental health and/or disability. By the time I realized that I checked off almost all of the diagnostic criteria for autism — and was pretty sure that any professional I saw would agree — I had aged out of the majority of resources that were covered by health care. I was at a loss as to how to access anything that might be left. If there were any form of testing or treatment for adults at the time, it was far beyond my research capabilities. Everything I read on autism in Canada suggested that paying for private testing was my best course of action. 

Which meant money was the primary barrier. I couldn’t afford testing because I was starting to have issues maintaining gainful employment as a result of my undiagnosed autism. My occasional writing assignments weren’t paying the bills. I was landing gigs as a fitness instructor but was eventually let go from most of them — usually for “not connecting with the clients well enough.” Efforts to secure anything more long term in either media or fitness never made it past the job interview stage; I never heard back from most of my prospective employers. The nice ones gave me vague feedback like “we didn’t feel you fit the culture here.” (I was far from alone. Unemployment statistics for autistic adults are staggering.) My parents couldn’t afford to help me out in part because my autistic father, who was also undiagnosed at the time, had autism-related work issues of his own. 

I was stuck in this vicious holding pattern for years. I couldn’t pay for autism services because I couldn’t figure out what about me might be putting employers and clients off. I couldn’t figure out how to improve my employment situation — or address the impact this constant rejection and failure were having on my mental well-being — without any guidance from an expert. I couldn’t figure out how to find or pursue alternate resources that might be more affordable because I was struggling with executive dysfunction. I didn’t have the professional assistance that could have helped me figure out how to manage that — or even explain to me what it was and how many autistic people have problems with it. I couldn’t get help because I’d never had help. 

My rule-following autistic brain wouldn’t even allow me to think of myself as really autistic until someone officially diagnosed me as such. I had it in my head that it would be presumptuous to seek out any materials or communities for autistic people if I wasn’t a certified real autistic. So I remained confused and alone. 

During that time, an autism assessment became an abstract fantasy to me: Something I’d treat myself to if I ever achieved any level of success. I’d daydream about paying an expert to confirm a fundamental piece of information about myself that I was 99.9 percent sure I already knew the same way I once imagined buying an open-concept mansion if I won the lottery. 

I imagined that it would be freeing and life-changing. I’d learn how to fix myself and become a functioning member of society. Other people might be more patient with me if they knew what I was up against and how hard I was trying to exist in their world! Maybe I could forgive myself for all of the mistakes I’d made when I didn’t understand myself. Hell, maybe I could even give myself a little credit for any progress I made during those years. 

In the meantime, I figured I’d probably get by okay. If I’d made it this far, then maybe my Schrödinger’s autism wasn’t that bad. Surely I could handle it.

That was not the case. That is not what happened. 

Instead, the holding pattern wore away at me. The haphazard coping mechanisms I was employing to handle my not-so-bad autism crumbled, and I had a life-threatening crisis. It wasn’t prosperity that got me my dream assessment; it was desperation. 

The process itself was about as anticlimactic as an arguably life-saving event can be. Mom and I went to a nondescript midtown Toronto building and were led into a quiet office with soft, indirect lighting. (Although I never asked, I’m assuming these design choices were a conscious effort to cater to a clientele with a wide range of sensory issues.) A man with an equally gentle voice introduced himself, outlined the process, and asked me to explain, in my own words, why I was there. 

I don’t recall exactly what I said, but I think it was something like, “Well, there are a number of reasons but, most recently, I wanted to kill myself because I missed a lunch date and I don’t think that’s appropriate.”

I filled out some written questionnaires. I answered a bunch of verbal ones. We covered everything from bullying and toilet training to the repetitive way I play with my hair. Mom provided additional observations from my childhood. 

“Watching Sarah try to socialize when she was little was like watching her try to play jump rope games,” she mentioned at one point. “She’d watch and watch and watch, but she could never figure out when it was her turn to join in.”

“I still haven’t figured that out,” I added. “The talking or the skipping.”

Two weeks later, we returned and were informed that I was, in fact, autistic. 

Those two appointments came to $500 Canadian. My parents had budgeted for more, originally planning to follow through with a more clinical round of testing, but the assessor suggested investing that money in therapy with an autism specialist instead. So we did.

The fallout from this grand revelation didn’t exactly live up to expectations, either. The clemency I’d imagined never came. From me or anyone else. When I told people — family, friends, random people who made the mistake of approaching me at parties — about my new diagnosis, they were mostly confused and suspicious. Was I sure I was autistic? I didn’t seem so. There were labels for everything these days. Wasn’t that just a label rich parents bought to excuse their kids’ poor discipline? 

In the months that followed my diagnosis, I worried that I’d wasted my parents’ nonexistent money. The way I saw it, they paid for little more than my right to call myself autistic, and I still couldn’t make people understand me. Or believe me at all, in some cases.  

The only immediate benefit seemed to be that, when people accused me of pretending to be autistic for attention (which still happens regularly), I could say, “I was diagnosed!” And it shut about 40 percent of them up.

Through a number of meandering baby steps, I was able to see more and more value in the expense and the experience.

First, I made a little progress in therapy. With that came a new outlook: Maybe I’d spent the money on validation. On finally having someone confirm something I’d known about myself for so long. Maybe we’d even invested in my long-term well-being. I now had a valuable piece of information that could help me figure out healthier ways to take care of myself, navigate a world that wasn’t entirely in sync with my wiring, and manage my reactions to disruptions like thwarted lunch plans. 

Once I felt like I was allowed to use the word, had gained some post-diagnosis perspective, and had the energy to do something with my life other than basic survival, I started to write about my autism. Through that writing, I connected with other autistic people and a few great allies. I learned about the ways in which we were similar and the differences between us. And one of the topics I learned about was testing and diagnosis. 

While many of the nonautistic people I talked to in those years seemed to assume that autism was at risk of being over-diagnosed, I was more worried about who was still being left behind. I wasn’t seeing rich people buying autism labels for their kids or people pretending to be autistic for fun. I was seeing the same lack of awareness that failed me decades ago still failing other autistic people — especially autistic people of color. I saw people who had done years of their own research being written off as fakers because they couldn’t access or afford an assessment. I wondered how my life might be different if I had been diagnosed earlier. I also wondered what could have been prevented if I’d felt like I was allowed to consider myself autistic all along. Now I wonder about what I can do to prevent other autistic people from experiencing my lowest moments.

When I became a diagnosed autistic, my opinions on matters revolving around diagnosis and money magically began to hold a little weight with general audiences. In a sense, my parents bought me a license to talk about my life and a chance to make life at least a little less harrowing for people like me. 

Sarah Kurchak is a writer living in Toronto and the author of the forthcoming memoir I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder.

After 12 years of loyal and increasingly glitchy service, my beloved sixth-generation black 80GB iPod Classic finally died this summer, taking a small chunk of my ability to function in the outside world with it. I’m autistic, and the media player had become a mix of a sensory regulation aid and security blanket for me. Smoothing my thumb around the click wheel was one of my favorite stims (a repetitive movement that many autistic people can use to help self-regulate). Making and listening to playlists — generally one to three carefully selected songs on repeat — helped me drown out other potentially overwhelming noises when I was out in public. And it gave me something to focus on when I was struggling with anxiety or dissociation.

I’ve been a bit lost since the iPod’s demise, but the only thing that upsets me more than not having it is the idea of replacing it with anything other than the same iPod. Just thinking about having to adjust to a media player that operates and fits in my hand in a slightly different manner — or even having to look at it in a different color — viscerally upsets me in a way I can’t quite articulate. So I’ve been spending a lot of time on eBay, looking at the refurbished sixth-generation black 80GB iPod Classics that are available and trying to determine which refurbisher I should order from. And how many I should get. 

Autistic people can have an aversion to change and disruption. “Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds and sights,” autistic writer and researcher Therese Jolliffe explained in “Autism: A personal account.” “There seem to be no clear boundaries, order or meaning to anything. A large part of my life is spent trying to work out the pattern behind everything. Set routines, times, particular routes and rituals all help to get order into an unbearably chaotic life. Trying to keep everything the same reduces some of the terrible fear.”

This effort to establish some stability is often reflected in the way we use consumer goods. We might only wear particular pieces of clothing or only eat a limited number of foods — sometimes only when they come in a specific package. We tend to use the same items over and over again until they fall apart, or we lose them. 

If there’s a disruption in these patterns, the fallout can range from discomfort to potentially life-threatening dietary changes. The market is its own confusing, interacting mass of events, fast fashion, trends, rebranding, and planned obsolescence, though. Which means that trying to procure the goods we want and/or need becomes yet another thing that autistic people do atypically. 

In their most pressing form, these quests can go global, sometimes with heartening results. This past July, Twitter mobilized to help replace a Next brand dress for an autistic girl who wouldn’t wear anything else. Other girls who owned the tunic and the British clothing retailer itself sent backups in multiple sizes after a family friend’s plea went viral. In 2016, Tommee Tippee made 500 blue sippy cups for a 14-year-old autistic boy who only drank from its recently discontinued model when his father ran out of replacements and turned to the internet for help.

But the practice is far more widespread and varied than the occasional human interest story. Most autistic people, and our supportive family members and friends, have at least something that makes our lives more manageable. And we also have some sort of stash, hack, or search network to sustain our access to it. 

Carole Ann Littlehales has been ordering the same few clothing and food items in bulk for her autistic son Edward, who is now in college, since he was a child. He’s relaxed his wardrobe restrictions somewhat since turning 18, but his diet remains rigid. She reports that he eats an increasingly limited diet of specific brands, including Nesquik chocolate powder, Jaffa Cakes, two flavors of Capri Sun, and Laughing Cow cheese spread. “His only concession to something different is that he will eat some chips from our local Chinese takeaway, but he only ever eats these on Saturdays,” Littlehales says. 

In response, her grocery shopping habits have become vigilant — and creative. “I stockpile everything as if I can’t source them in the shops, and he will not have alternatives. I can’t substitute ASDA cream crackers with other brands as the ‘pattern is different.’ Our local shops were not selling Laughing Cow anymore at one point. I wrote to Laughing Cow in France and they sent, via courier, a refrigerated package with 48 boxes of cheese in it.”

Beyond his basic needs, Littlehales also does her best to facilitate Edward’s lifelong interest in photography, for which he requires a particular model of camera that’s been off the market for a number of years. Edward and his family first settled on Videotec cameras out of practicality. As a child, he didn’t know how to cope with batteries running out, so he threw the cameras when it happened. “We went through many of them until we found a sturdy one,” she recalls. 

The Littlehales now purchase every Videotec camera they can find on eBay and source spare parts as needed. ”I did have to contact Videotec at one stage as the battery compartment had broken, and they actually sent me spares that they had in their office.” Edward now changes the batteries himself. 

When the current wave of straw bans (which, it bears repeating, are harmful to disabled people) diminished the accessibility of Starbucks’ iconic straws, Shannon Des Roches Rosa began collecting them for her son.

“The world is typically an unwelcoming place to non-speaking yet exuberantly autistic people like my son Leo — and he notices. This means he is stressed out a lot, so I think he deserves unfettered access to things that make him feel safe, comforted, and happy, like green plastic Starbucks straws,” she says. “My reaction has been to stockpile: A couple of straws here, a couple of straws there. I don’t know what we’ll do if the straws become completely unavailable, because he is visibly contemptuous of every single plastic straw substitute he has tried so far.”

Social media campaigns and e-commerce sites have been a godsend for autistic people. Not only do they help us source much-needed or much-wanted goods, but they also allow us to do so without having to risk the potential sensory overload of visiting physical stores. But some items are too rare for even the most dedicated and widespread hunt. 

Angelica Hill, an autistic single mother, found the ideal job interview shirt at a thrift store for $4.95. Like many autistic people, Hill finds the interview process especially challenging, and she describes herself as “extremely sensory-sensitive.” Having clothing that didn’t cause her discomfort or distraction helped her navigate it a little easier. “[It was] very plain, no extra details. Think a men’s fitted dress shirt, but designed to accommodate breasts. 98 percent cotton, 2 percent spandex, so it had just a little bit of stretch. The arms were the right length, the darts were in the right places, the collar wasn’t too tight, and no gaping between buttons. An absolutely perfect fit.”

When the shirt yellowed with time, Hill tried to replace it through more traditional methods. “The search took me weeks. I’m not great in crowds or malls, so I couldn’t do it all in one day. I think I spent about 20 hours in malls trying to find a shirt that worked. A lot of them were rejected before I tried them on, as I had a budget of $50 before tax and they were well above that. The ones I did try on, though? Awful.”

Hill knew how to sew, though. So she started researching pattern-making, took the original shirt apart, and taught herself how to replicate it. “Now, I don’t have replacement problems with clothes anymore. I’ve solved that in a very permanent way. Plus, I get to avoid malls, and touch all the fabrics in the fabric stores, which are much less busy than malls. Sensory fun-day!”

Sometimes replacing a necessary item isn’t an issue of supply but finances. The unemployment rate among college-educated autistic adults is 85 percent. Meaningful support for autistic individuals is often costly and underfunded.

When access and money aren’t an issue, though, there’s still another hurdle that autistic people can face in trying to replace something important to us: self-consciousness. When you know that you’re different — and how harshly you’ve always been judged for it — it can feel hard to justify these kinds of searches and purchases. Especially when the products might not seem necessary to others. 

“As you get into adulthood, you’re kind of told that you’re not supposed to have comfort items,” says Zoey, a 32-year-old autistic social worker. “You’re supposed to have things that are useful. Things that you need, not things that put your mind at rest. It’s not an exclusively autistic thing, but it gets drilled into us that we have to outgrow certain childish tendencies, like having comfort stuffed animals or comfort items that you take with you all the time. If autism is seen as a developmental disorder, then autistic people are seen as people who have to outgrow childhood.”

Zoey herself had to contend with this judgment when she lost her favorite plushie en route to Stockholm in 2018. Dipstick, a stuffed dalmatian she got at the Disney Store when she was 11, had sentimental and practical value. He was the first thing she purchased with her own money and a coping mechanism as she got older. “He’s always had a very, very special place in my heart. He’s kind of a travel companion for all of my years. To the point where it’s like I would consider it really unlucky if I didn’t have Dipstick with me [when I] travel.”

Despondent without him, she decided to look for a new Dipstick. Returning to the Disney Store for a new model wasn’t going to cut it. After one fruitless Amazon search and about 15 different keyword combinations on eBay, Zoey found a similar make for $20. Shortly after the new Dipstick — who does not travel — arrived, she shared the experience during a workshop at her job. 

“I could tell it touched a lot of people. My co-worker, the clients, and the people running the group expressed a lot of sympathy for the troubles I had with this goddamned stuffed animal,” she laughs self-deprecatingly before catching herself. “I don’t even know why I feel the need to qualify this. I should be proud! No shame. This means so much more than just buying another thing.”

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Like many autistic people, I don’t handle background noise well. My senses and brain can’t separate it from any other sounds. It’s often just as loud as, if not louder than, what I’m trying to listen to. And the effort it takes to try to handle that issue while focusing often leaves me frustrated and drained.

I’ve been experiencing this a lot lately in regards to information, specifically around news stories that feature some terrible combination of anti-science or pseudoscience and autism panic. Whenever I see a story a headline like “Fake science led a mom to feed bleach to her autistic sons — and police did nothing to stop her,” I get that same overwhelmed and panicked feeling — and I’m just as incapable of tuning it out.

And there has been a large upswing of stories that focus on the largely underground phenomenon of parents using everything from turpentine to urine in an effort to “cure” their children’s autism. NBC News recently published an exposé on the dangerous and all-too-common practice of orally and anally administering bleach-based treatments to autistic children. In March, a UK ad watchdog organization ordered 150 homeopaths to stop claiming that they could cure autism through treatments such as giving children up to 200 times the maximum recommended vitamin C dose. Amazon recently stopped selling books that promote bleach as an autism treatment or cure. And on Monday, the FDA put out an official warning that drinking bleach is dangerous and it won’t cure autism.

None of this news comes as a surprise to me. I’ve been aware of autism-related vaccine conspiracy theories for as long as I’ve been officially aware that I am autistic.

Anti-vax myths start and spread online

Many of these myths have flourished during the social media age. Emma Dalmayne, an autistic advocate with autistic children, discovered online groups dedicated to fake autism cures in 2014 and has been working to expose them ever since. These groups have operated under the radar for years, so it’s hard to track their origin or how they’ve spread. But the treatment that most of them push — a sodium chlorite formula known as “Miracle Mineral Solution” that produces chlorine dioxide when used as instructed — can be traced back to The Miracle Mineral Solution of the 21st Century, a book self-published by former Scientologist Jim Humble in 2006.

Humble and his followers have pushed MMS as a cure for everything from HIV to the common cold. Now a subset of desperate parents who have convinced themselves that autism is caused by toxins or parasites believe they can cleanse their autistic children by giving them MMS enemas, forcing the solution down their throats, or putting it in their baby bottles.

Much of this panic stems from the anti-vax movement. While there are many reasons parents choose not to vaccinate their children, the American anti-vax movement is fueled in part by privileged white people who have bought into conspiracy theories about the risks of vaccines — one of the most pervasive of which is that vaccines cause autism. The anti-vax situation has become dishearteningly worse since I first wrote about the movement’s impact on autistic people four years ago. But so has the public’s awareness of anti-vax narratives and fake autism cures.

Still, all of this adds up and contributes to the constant buzzing reminder that people continue to be ignorant and fearful about autism. It’s hurtful on a personal level. To be constantly reminded that a chunk of the world would rather risk public health crises or funnel bleach into their terrified child’s orifices than have or love anyone like you can’t help but weigh a person down. But what really bothers me is that innocent people are being endangered and abused based on what amounts to little more than overly simplistic and alarmist fiction. The autism that terrifies these parents and guardians is as divorced from the realities of autistic life as their methods are from actual science.

Autism is not some monstrous fate

When it isn’t being caricatured in shows largely produced by and for non-autistic people, like The Good Doctor and The Big Bang Theory, autism is often characterized as a horrible way to live. We cost too much to raise. We destroy marriages, even though the statistics around our supposed home-wrecking powers were made up. A 2009 commercial for Autism Speaks directed by Oscar winner Alfonso Cuarón claimed that autism makes it “virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.” That particular ad has since been pulled, but the sentiment remains.

If I didn’t have a lifetime of experience with autism, I might be scared by these constant messages of doom too. How can we expect people to react to the possibility of loving and caring for an autistic person in a rational manner when the stories this world tells about us are, themselves, irrational? Our society isn’t going to make any meaningful progress against the anti-vax or snake oil cure movements unless we change the way we talk about autism.

I’m not saying we should give it a shiny PR campaign. Autistic people can face significant challenges as a result of both our neurology and a lack of understanding and acceptance. We — and our care partners, for those who need them — are desperate for better services and more financial and emotional support to help us exist in a world that wasn’t built for people like us. Even the most privileged among us face a suicide rate nine times higher than the general population.

Just because autistic life can be difficult doesn’t mean it’s worse than a death sentence, though. We have bad days, but we good ones and neutral ones too. We are human beings, and our lives have value. We don’t need to prevented or eradicated at all costs; we need better services and better public education than what we have now.

We are people, with all of the complexity of the human experience that entails, not a looming boogeyman. Treating us as such could be a far more powerful weapon against anti-science conspiracy theories than any statistic.

Sarah Kurchak is an autistic writer from Toronto. Her first book, I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder, comes out in April 2020.

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On March 21, 2017, CNN published an article on a new study from the American Journal of Public Health that found the average life span of an autistic person is 36 years. I wasn’t shocked by this news. I know how dire things can be for so many of us on the spectrum, but that number struck me for a very specific reason. I had just turned 35 the previous month.

Since I learned this news, I’ve been anticipating the milestone of turning 36 with a mix of confusion, dread, and a host of other feelings I can’t quite articulate. I’ve had more existential episodes than usual, brooding about the meaning of life. It’s been a lot like a midlife crisis — except that (I kept thinking) my own midlife might have happened as long as half my life ago. The average age of death for autistic people who live to adulthood might be older than 36 (and as of now, there is still no age-specific data). Still, the figure from the research journal haunted me.

At some point between that moment and now, I made a pair of promises to myself:

1. I had to make it to 36.

2. Once I did, I needed to do something to mark this morbid accomplishment — perhaps writing something to help the next generation of autists approach their own birthdays just a little easier.

The good news is that I have officially, as of 8:35 am Eastern on February 7, made it.

The bad news is that living while autistic doesn’t always leave one with much energy to write all of the meaningful things that you want to write to improve your life and the lives of other people like you.

Turning 36 scared the shit out of me. I want the fact that autistic people die so much earlier than the average American to scare the shit out of you too.

Here’s why that number is so low — and all the ways I’m lucky to have made it to 36

Some caveats. First: Not all studies on autism and mortality agree on the average age of our deaths. If you think I’m being overly dramatic by picking one that appears to cite the youngest age, here are some other recent studies with more positive results. One says 39 is the average life span; another says 54. By “positive,” though, I mean “studies that determined autistic people live longer, on average, than 36, but still found that we die significantly earlier than our non-autistic counterparts.”

Second, whenever I write about autism, there’s always someone who shows up to point out that I’m not really autistic enough to count or that I’m not the kind of autistic person that people are thinking about when they think of the tragedies and pressures that face people on the spectrum.

Because I can speak, work, and maintain a semblance of a social life — and because I am able to hide my most severe symptoms from other people — they assume that I am too “high-functioning” to be considered autistic. Before that happens here, let me say that, yes, I am probably at a lower risk of death than many autistic people. Not because I’m “higher-functioning” or because my autism is mild, but because I happened to be born into a certain body and a certain set of circumstances.

For example, the study that CNN cites, “Injury Mortality in Individuals With Autism,” primarily focuses on — as you can guess from the title — death from injury. As a child, I was never a wanderer (as many autistic children are), which put me at a low risk for drowning and other related deaths. I’ve had seizures, but I don’t have epilepsy (as many autistic people do), which puts me at a lower risk of death.

I also don’t have to worry that my incredibly supportive parents will murder me for being too much of a burden to them. That  makes me luckier than others with my condition. More than 550 disabled people have been murdered by their parents, relatives, or caregivers in the past five years in the United States, according to the Autistic Self Advocacy Network.

“We see the same pattern repeating over and over again,” ASAN says of the grisly phenomenon. When disabled children are killed, the media focuses on the “burden” that the murderer faced in having to care for them. People sympathize with them instead of the victim. And in the worst cases, this can lead to lighter sentencing.

There are also ways that I am safer than many of my fellow autistic people that we don’t yet have the statistics for but that I can definitely see in the world right now. As a cisgender white woman, I do not worry that I’ll be killed by the police like 15-year-old Stephon Edward Watts or 24-year-old Kayden Clarke. Nor will I have to suffer the serious long-term health effects that this kind of constant fear and dehumanization can have.

The stress of living with autism is exhausting

You can’t entirely separate my incredibly privileged and lucky autistic ass from these devastating statistics. Autistic adults who don’t have a learning disability, like me, are still nine times more likely to die from suicide than our non-autistic peers. Autistica, a UK charity, explores some of the complex reasons that might be behind this alarmingly high suicide rate in a report on “the urgent need for a national response to early death in autism.” Or you can just take a look at my own laundry list of issues to get the general idea:

I’m tired all the time. The coping mechanisms that I developed as a bullied and undiagnosed child — from learning to mimic the behaviors of people who are more naturally likable than me to holding entire conversations where I reveal nothing about myself for fear of being too enthusiastic, too annoying, too overbearing, or simply too much — are not great for managing a remotely healthy life or building self-esteem. The effort it takes to fit in is increasingly exhausting as I get older.

All that hard work to make other people more comfortable around me feels more and more pointless. I appreciate that I have people in my life who have assured me that I can just be myself, but unlearning almost 36 years of shitty coping mechanisms and performances also takes a buttload of work. My sleeping patterns, due to anxiety and possibly to autism itself, are erratic at best.

I value the social and career gains that I made when I had more energy and inclination to blend into society. I’ve wanted to be a writer since I was old enough to read, and I’m now lucky enough to survive on writing alone. But with it has come chronic anxiety, which seems to increase exponentially. There is, however, one calculation that I’m always doing in my head: whether my contributions to my family, friends, and the world are at least equal to all that I feel like I’m taking from it. I always feel like I’m at a deficit.

I repeatedly have to tell people I’m not a math savant. I’m tired of watching people who aren’t on the spectrum tell shitty versions of our stories while I can’t find the funding or the audience to tell my own. I’m tired of watching people get feels and inspiration from shows like The Good Doctor while they can’t seem to give a shit about autistic people in real life.

I’m so, so sick of watching people pay lip service to the value of autistic life while funding research into prenatal testing for autism at one end and supporting euthanasia for autism on the other, all in the name of preventing suffering. As if these measures that suggest that autistic birth should be prevented  —  or that they have a duty to die if they are too much of a “burden” on their loved ones — don’t make me feel worthless.

Even when I’m not actively struggling with any of the above, there’s the constant stress and anxiety. My resting heart rate is in the 90s. My body aches in ways that I can’t entirely attribute to age. My energy level appears to be similarly deteriorating.

This should not be a good enough outcome for any autistic person. We all deserve better than this.

So what do I want you to do about it?

I’ve spent my whole life being told that non-autistic people are so brilliant and intuitive when it comes to social issues. Like many autistic people, though, I haven’t always felt like I’ve seen much empathy, compassion, or understanding. And the evidence is starting to suggest that we’re not wrong about the level of judgment and stereotyping we face.

If you want to understand people on the spectrum, I’d recommend starting with some of the following: Listen to us. Invest in our work. Invest in science and actions that actually make our lives better now instead of chasing a hypothetical cure. Don’t kill us. Think twice about sympathizing with the parents who do kill us. Don’t rush to armchair-diagnose every mass murderer with autism — like what happened with the most recent Florida school shooting. Give your money to marginalized autistic people instead of charities like Autism Speaks, which dedicate only a small percentage of their budget to programs that will actually help autistic people. Think about how hard we’re working to exist in your world and consider meeting us halfway.  

Tell us we don’t bore you. Tell us we don’t drain you. Look at us somewhere other than the eyes — we’re really not comfortable with eye contact and are tired of being forced to make it for your benefit — and tell us that we deserve to be alive.

And then act like it.

Sarah Kurchak is a writer, autistic advocate, and retired professional pillow fighter from Toronto. Her work has appeared in outlets including the Guardian, the Establishment, Fusion, and Vice. Find her on Twitter @fodderfigure. This piece was adapted from an essay first published on Medium.

First Person is Vox’s home for compelling, provocative narrative essays. Do you have a story to share? Read our submission guidelines, and pitch us at firstperson@vox.com.

When I was finally diagnosed with autism spectrum disorder at 27, the thing that helped me the most wasn’t therapy or autism organizations. It wasn’t even my introduction to the neurodiversity movement and the idea that I didn’t have to be “cured” to have a worthwhile life. It was watching television.

One of my favorite shows was the cult favorite sitcom Community. The character Abed Nadir, though never officially labeled autistic on the show, is heavily coded as autistic. He was intensely interested in pop culture, and his use of sarcasm was a work in progress. He liked people but didn’t always know how to connect with them.

He was both a rare chance to see someone like me onscreen and a cultural touchstone that I could use to help explain parts of myself to new people without feeling like I had to teach Autism 101 every time I opened my mouth.  

Abed was to me what Sesame Street’s writers are hoping the new autistic Muppet Julia will be to today’s children on the spectrum. Julia debuts April 10 on HBO.

When I wanted to describe anything from my off-kilter understanding of pranks to my interest in pop culture to my desires and imperfect efforts to relate to other people, I could say I was a little like Abed. Some people responded with references to issues that he’d experienced on the show. Some hadn’t heard of Community, which at least gave me the chance to talk about a great show instead of giving them a straightforward list of my symptoms and needs. At the very least, it got a few people to stop joking about whether I could count cards. That one little reference inspired a lot of understanding that I hadn’t really experienced before Community.

Julia’s presence on Sesame Street is a bold step forward for autistic awareness and inclusion. And based on my own experiences on the spectrum and in the world, I think her existence has the potential to be even more powerful than that. Thanks to Julia, autistic kids now have a chance to find their Abed decades before I found mine. She’s not just someone who might look and move a little like them. She has the ability to teach a whole new generation of autistic kids that they belong.

Learning social skills through television

In the show, Abed learned some of his social skills from watching movies and television shows. This was something I related to a lot. My interactions with people in real life didn’t always make perfect sense to me, so I turned to their scripted counterparts to help me figure out what I’d been missing and how to join in. I’ve since learned that using television shows and movies as a way to learn social skills is somewhat common for people on the autism spectrum.

To a certain extent, this is true of all people. Generations of kids have grown up on the kind and increasingly inclusive lessons of Sesame Street, for example.

As Autumn Singer-Califano observes in the 2008 Journal of Educational Psychology article “The Use of Technology in Enhancing Social Skills,” kids and teens can use their television watching as a way to mentally “rehearse appropriate interactions with peers and selectively apply them as appropriate situations arise.” Television can also be used as a kind of tool to help children and adolescents better understand themselves and others.

When you have a disability that affects the way you can read and respond to other people, those benefits become even more important. Some studies have started to look into ways of harnessing the potential of television to help young people on the spectrum improve their social skills, but, as with most things autism-related, people who are actually autistic are way ahead of the experts on this topic. Many of us have been using TV shows to help us fill in the gaps in our social development since we first realized we weren’t like other kids, and those lessons often continue well into adulthood.

Autistic bronies and pegasisters of all ages have embraced My Little Pony: Friendship Is Magic both for its charming plots and for its explicit lessons about nurturing personal relations.

“As a person with Asperger syndrome, I learned more about theory of mind, friendships, and social interactions from this season than I had in the previous 31 years of life,” a brony named Luke Allen told Wired in 2011.

Dori Zener, an autism therapist I interviewed for a story on media and autism representation last year, told me that a number of her young female clients were big science fiction fans, because social conventions tend to be better spelled out on shows where outsiders or actual alien species are involved.

Friends was also a popular choice with the girls she saw. One client went so far as to watch every episode of Seinfeld in an effort to teach herself how to understand sarcasm and the nuances of acerbic humor that she struggled to pick up in real life.

As for me, I have several shows that I’ve turned to over the years. I continued to watch Sesame Street and Canada’s Polka Dot Door long after my peers had moved on — and long after the programs’ math and language lessons had started to bore me — because I was still getting something out of the way the characters treated each other. I also went through a Friends phase in my early teens — I can’t speak for other girls, but I think the goofy, larger-than-life plots helped me parse group dynamics — before switching to NewsRadio and fantasizing about finding my own group of misfits instead.

When I was a teenager, the overly wordy cast of Dawson’s Creek became the perfect bridge between my overly wordy self and the “normal” teenagers I was trying so hard to figure out. The fact that the characters could articulate their feelings in great detail and at great length gave me a better glimpse into the teenage mind than anything in my day-to-day life did.

I even turned to pro wrestling for a while because its over-the-top feuds, betrayals, and alliances are a surprisingly effective way to navigate the darker sides of human interaction and subterfuge when you don’t have any natural ability to intuit people’s intentions.

This all helped me integrate into a world that’s not built for people like me. I could study interactions, take time to process them, and start to practice my own variations before attempting them in real life, where the potential for failure — and the cost of failure — is so much greater. Studying and mimicking characters has also helped me learn to modulate the tone of my voice, make my conversation more reciprocal, and project some things with my body language.

Still, autistic characters are rare in television or films

There’s one glaring omission from most shows that makes this kind of makeshift study incomplete at best and harmful at worst: autistic characters. Or at least autistic characters who are more than an object of other character’s pain, inspiration, and/or teachable moments. When you’re learning social skills from examples that don’t include anyone who is like you, there’s a good chance you’ll come to the conclusion that there’s no genuine place for you in situations like that.

At least, that’s what I got from them. I became good at mimicking and accommodating allistic — non-autistic — people, but I didn’t know how to stand up for my own needs and desires as a person. I’m not entirely sure I even knew I could. I shaped myself into such a cypher that I actually made a few friends in my 20s who knew almost nothing about me after years of hanging out together.

So when I saw in Community Troy, the popular high school football hero, finding a kindred spirit in Abed and not just delighting in his differences but actually sharing a few of them, it was a revelation for me. For the first time in my life, I was seeing an outside example of how an autistic person might be able to form a mutually beneficial friendship with another person without having to fundamentally change or hide who they were.

It’s one reason I’m excited about Julia — but it’s an imperfect representation

In the wake of the announcement that Julia, an autistic Muppet, would make her television debut on Sesame Street this month, a lot of allistic people have been discussing how her presence on the show can raise awareness and help teach allistic children to be more understanding and inclusive.

I’ve written about how Julia, as imperfect as her representation of autism is, can potentially help save a new generation of kids from the kind of bullying I suffered in my own undiagnosed and misunderstood youth. But what few of us have mentioned is that this Muppet doesn’t just have the potential to teach allistic kids how to treat autistic kids better. She can also teach kids like me how to treat themselves better.

Take these two clips: one where Abby notices that Julia is humming “Sunny Days” to herself and initiates a sing-along, and one where Elmo sings the praises of playing side by side when Julia isn’t immediately interested in his suggestion of games.

When children who aren’t on the spectrum watch these clips, they’re learning how to treat their autistic peers like human beings with their own wants and needs.

When kids on the spectrum see those same segments, they are learning that it’s perfectly valid to have those needs and that friendship can and should be a mutual exchange. It doesn’t have to be an interaction where you have to pretend to be “normal” just to earn a modicum of tolerance.

Sesame Street’s use of Julia so far isn’t perfect. I wish the other Muppets and the adults around them didn’t spend so much time explaining Julia or talking over her. That’s a habit that allistics really shouldn’t pick up and autistics should not be taught to passively accept. But this is still an important step forward for a population that often has a unique relationship with the things we watch.

I’m a firm believer in the power of media representation for everyone. Seeing a part of yourself reflected back in the stories you love is an incredible experience, one that can make you feel like you matter, like you have a place in this world even — or especially — when you’re being yourself. If you’re a person who also relies on those stories to teach you about the world, meaningful representation also provides you with something else: a template to help you make all of those life-changing things a part of your reality.

Sarah Kurchak is a writer, autistic advocate, and retired professional pillow fighter from Toronto. Her work has appeared in outlets including the Guardian, the Establishment, Fusion, and Vice. Find her on Twitter @fodderfigure.

First Person is Vox’s home for compelling, provocative narrative essays. Do you have a story to share? Read our submission guidelines, and pitch us at firstperson@vox.com.