The truth about living with autism

🧠 In honor of World Autism Month, three neurodivergent people share their stories
Also today: A devastating dual diagnosis, everything you always wanted to know about ticks (but were too creeped out to ask), and the power of living abroad
By Jon Gluck

Every April, the advocacy group Autism Speaks celebrates World Autism Month. Their intention is to spread awareness of the complex developmental condition, which affects some 75 million people worldwide, and dispel misconceptions about it.

In “I’m a ‘highly functional’ Autistic. It takes a lot of work,” social psychologist and Unmasking Autism author Devon Price does just that, providing frank and moving insight into what it’s like to navigate a neurotypical world as a neuroatypical person. Here he is, for example, on the struggles he faces with noise: “For a few years, my partner and I lived on a busy corner where traffic fed into the highway. Loud honking, yelling voices, and ambulances would annoy me all day and night. It left me constantly on edge. I’d yell out my window, at no one in particular, to drain off some of my frustration and rage. I’d stomp around the house, pissed off, wanting to smack myself with a hair brush to calm myself down. I’d close myself away in the closet and turn all the lights off, but it didn’t help much.”

“My journey to being diagnosed with autism at 32,” by Janna Lynn, meanwhile, sheds much needed light on that experience. Did you know it can cost as much as $4,000 just to get screened for autism? That the severe premenstrual disorder PMDD disproportionately affects people with the condition? That many adults with autism report feeling “more autistic” as they mature? “Which is untrue,” Lynn writes. “Those with autism are born with it, but at a certain point the weight of societal expectations and layers of overwhelming demands or trauma become too much for us to handle, and we hit a breaking point.”

Lastly, Shamiha Said outlines the many ways autistic people experience gaslighting. “I have been told by colleagues, family members, friends and trolls online that my symptoms aren’t autistic and that I am making it up,” Said writes. She then documents some of the specific ways people try to deny her condition — “You don’t look autistic,” “Everyone is a little autistic,” “It’s all in your head” — and explains why each of them is untrue, hurtful, foolish, or all of the above.

What else we’re reading

• “Petit Munster Is an Acquired Taste,” by Dim Nikov, a straightforward, six-paragraph ode to one particularly fragrant fromage, is short and sweet. Or perhaps more accurately, short and stinky. Nikov writes: “For the intrepid eater who can stomach the rind’s pungent smell — somewhere along the spectrum of cheese crisps, sweaty feet, and bird poo — a surprise awaits on the inside: a lush, creamy, spreadable interior with a mellow flavor and a decadent mouthfeel that lingers on your palate and practically melts your heart.” As someone who appreciates the value of a good, simple recommendation, particularly if it involves cheeses that smell like feet, I say, “Yes, please!”
• Julio Vincent Gambuto is a longtime Medium contributor whose 2020 post “Prepare for the Ultimate Gaslighting,” a re-examination of what is, and isn’t, important in life inspired by the COVID-19 pandemic, led to his book Please Unsubscribe (Simon & Schuster). In “And Then Cancer Struck. Both of Us,” Julio tells the story of how his fiancé and he were diagnosed with cancer — acute leukemia and colon cancer, respectively, in that order — within a matter of months of getting engaged and offers unblinking insights into what the almost impossible to believe experience has been like. Gambuto’s fiancé has undergone chemotherapy and a bone marrow transplant. Gambuto recently had surgery and will begin chemotherapy soon. “It’s all been so extreme,” Gambuto writes. “All I can do is what I know has worked in life’s other dark moments: take a deep breath, forget about the past and the future — neither exist right now — and just take the next step.” We wish you both nothing but the best, Julio.

From the archive

“Spring is the time of plans and projects,” Tolstoy wrote in Anna Karenina. He forgot to mention ticks. Tickpocalypse, a collection of nine stories published in 2019, tells you everything you ever wanted to know about the subject, and then some. In addition to documenting a burgeoning Lyme disease pandemic (a term, eerily enough, that wasn’t yet in wide use), the package also covers everything from how, exactly, a tick sucks your blood and makes you sick (one fun part of that: a tick’s saliva contains an anticoagulant that prevents blood from clotting, allowing it to feed continuously for days) to gene-edited tick-resistant mice being developed to curb the spread of Lyme (researchers are using CRISPR to edit the genes of white-footed mice, the primary carriers of the Lyme bacterium, so that they can’t be infected in the first place).

Your daily dose of practical wisdom (about broadening kids’ cultural horizons)

“Living in another country teaches young people perspective, humility, and appreciation — about other countries and their own. If you get to know people in another country, it is impossible to slide into hatred towards the people of that nation.” — Sandra Plourde in “Save the World: Send Your Kids Abroad!”

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Edited and produced by Harris Sockel, Scott Lamb, & Carly Rose Gillis

Questions, feedback, or story suggestions? Email us: tips@medium.com