May 2025 Shell Exchange

Welcome to the May 2025 Shell Exchange!

Midway through each month, I drop a list of recommended reads. I try to feature winning hermit crab essays when possible. But those charming crabbies aren’t always easy to find. So I also make it a point to share pieces on invisible illness.

If you come across an essay or article I haven’t mentioned that you feel warrants attention, drop the link in the comments, and I’ll add it to the rotation next month.

1. “RFK Jr.’s autism study to amass medical records of many Americans” by Alexander Tin from CBS

“The new data will allow external researchers picked for Kennedy's autism studies to study ‘comprehensive’ patient data with ‘broad coverage’ of the U.S. population for the first time, NIH Director Dr. Jay Bhattacharya said.”

2. “My Son’s Inheritance: He has my eyes and my laugh. What if he has my depression, too?” By Arianna Rebolini from The Cut*

“As a newborn and then infant, Theo would abruptly pause in the middle of playing or babbling and gaze at nothing I could pinpoint, quiet, as if lost in contemplation. When he was just six days old, I recorded a video that I often revisit. I’m holding Theo with one arm and filming with the other; his face fills most of the screen. His lips are pursed, a small dribble of milk from the corner, and his eyes scan slowly back and forth, up and down, in an expression that mimics deep consideration. It lasts fifteen seconds.”

*Again: A certain 12-foot ladder will gain you access over the paywall

3. “A Particularly Brutal ‘Autism Acceptance’ Month” by Rebecca Upton from Disability, Chronic Illness, & Culture

“It isn't like autism has never been a topic of conversation before. We've had to watch non-autistic people use ableist rhetoric to devalue, infantilize, scapegoat, and demonize us time and time again. We've had to listen to our existence be used as a reason not to vaccinate kids against deadly infectious diseases. The headlines say we're tragedies, outcasts, inspirations, cautionary tales. Non-autistic people have felt threatened by the ways we have started to change the narrative ourselves in the last few decades, especially now that finding others like us is so much easier thanks to social media.”

4. “HHS Plans to Cut the National Suicide Hotline’s Program for LGBTQ Youth” by Julia Lurie from Mother Jones**

“Mental health experts say that trained counselors provide key cultural competency to LGBTQ youth, understanding the stress caused by recent political attacks, the importance of using appropriate pronouns, and the ways in which the youth often face lack of family support and harassment.”

**Incidentally, if you’ve seen/shared the post about Canada picking up the slack with a new number, it’s fake. In addition, one of the posts absolutely uses AI art, making it even more detrimental to share.

5. “My son has profound autism. And we are still a family” by Alysia Abbott from WBUR

“Ordinarily I’d be proud of Finn for mastering these tasks, but today I wonder: is this the best he'll ever do? And then I feel ashamed for even having these thoughts. In my head I hear the words of Robert F. Kennedy, Jr., the United States Secretary of Health and Human Services.”

6. “The Texas County Where ‘Everybody Has Somebody in Their Family’ With Dementia” by Marion Renault and Cheney Orr from The Atlantic*

“Today, Ramona will approach a taco or hamburger quizzically; she’s forgotten how to bite into them. At times, she doesn’t recognize the house where she’s lived for decades. Still, Monica is determined to keep her there. “‘ou want to keep them home, so they’re in a familiar surrounding,’ she said. ‘It’s not all the time that she doesn’t know she’s home.’”

*You know where to go

7. “Talk therapy is up, and use of psych meds without therapy is down, a study finds” by Rhitu Chatterjee from NPR

“Since the late 1990s, use of talk therapy first declined, then plateaued. It was also a time when use of psychiatric medications rose.”

8. “‘She’ll fall through the cracks’: Parents of kids with disabilities brace for new reality” by Barbara Rodriquez from The 19th

“As the Trump administration overhauls federal agencies with budget cuts, layoffs and inexperienced leadership, parents of children with complex medical needs and disabilities told The 19th they are navigating uncertainty over how the federal government plans to maintain key pillars of their kids’ lives.”

9. “Why Can’t We All Have Zofran? The prescription anti-nausea medication is miraculously effective. Some say it’s time it was available over the counter” by Katie Arnold-Ratliff from The Cut*

“Nausea remains one of the only quotidian ailments for which there isn’t a great OTC solution, and no over the counter antiemetic comes close to being as effective. So why is such a well-tolerated, non-addictive, widely proffered medication gate kept in this way?”

*I don’t know why so many cropped in this month, but the ladder is always your go-to option.

This one hits a little harder than usual, for me. For the past month, I’ve been fighting with my insurance who spontaneously decided to demand—and then rejected—a pre-authorization for my Zofran. (I’ve been on it for the past two years because of my intermittent nausea and alpha-gal)

They claimed I didn’t have the proper “diagnosis” to qualify to receive more than six (6!) tablets.

Granted, before my GI doctor started me on it (again, two years ago!), I horded the medication like an addict. I never knew when I’d be able to get it again, and it’s the only thing that calms my stomach.

But to change your mind out of the blue?

I was pissed.

I filed an appeal, demanding to 1) know the specialty of the doctor who made the first decision, and 2) insisting a GI specialist be used to review the appeal. (If you didn’t know you could do this, you’re welcome)

They just granted my appeal.

No one should have to live like this, though. Just saying.

Incidentally, I wanted to point out that the “Like” and “Comment” buttons for Beehiiv are at the top rather than the bottom.

You know, in case you wanted to use them.