What Difference Does a Label Make?

The ongoing battle between Autistic and HSP

It is normal for me to crash and burn after a big effort. It is normal for me to have one friend at a time, to disappear when I’m overwhelmed, and to tire more quickly, suddenly, and unpredictably than others.

I cope. Strange rituals cradle me.

They include low-paid writing, forest walks with my pepper spray, telling people no, over-explaining myself, re-writing to-do lists, canceling plans last minute, and having an ant colony as my emotional support animal.

You have an ant colony as your emotional support what?

Cracks emerge in the armor. Emotional meltdowns, periods of depression, fear of flying, mistrust of “nice” people, hypervigilance, and burnout.

After nearly six decades on the planet, I finally have an answer. I’m autistic. Or, I’m a “highly sensitive person (HSP).”

Wait, which am I? What’s the difference, anyway?

The neurodiverse zeitgeist can’t get autism and HSP to the negotiating table, and that’s because one is a box of pathology and the other is a tilting pedestal of idealization.

The pathology box describes mostly men, while the tottering pedestal describes mostly women.

If only they could meet in the middle, but for that to happen millions of women need to learn they are autistic, thousands of psychiatrists need to get into the 21st century, and society at large needs to stop pathologizing disability.

Housecats and tigers would need to cross rough waters.

When Two Worlds Collide

I follow r/hsp and r/autism chat groups because I’m trying to learn more about my people.

If the comments were thrown out randomly, without self-identifiers or the label “r/hsp” or r/autism,” they would be indistinguishable.

People who identify as HSP are usually female because the book “The Highly Sensitive Person,” by Elaine Aron, was a huge hit in the self-help space with women. It was written by a woman. It spoke from a personal experience and a sociological perspective, rather than a medical and diagnostic viewpoint.

It satisfied a hunger women didn’t know they had, because there are millions of women who are autistic and never got diagnosed.

It described and did not pathologize.

Sensitivity is, according to Aron, an inborn trait. It affects “15–20% of the population,” and is equally divided among males and females.

It is also found in over 100 species of animals.

Which would you rather be: a relatively common, non-disabled HSP or an autistic who — according to science that is more outdated than shag carpeting— comprises about 3% of society, and reminds everyone of Rain Man?

I would rather be a day-glow lizard drinking a pina colada, thank you very much.

The online tribe who post at r/autism usually brings a formal diagnosis. Some older women like me don’t bother getting a test. We’ve been invisible for decades, and we’ve learned to mistrust the psychiatric and psychological experts.

We know how much Wellness costs, and you better believe we’ll be shelling big bucks so we can buy the right label, and be taken seriously.

The experts didn’t see us.

HSP describes us and sees us, but strangely enough — continues to gaslight us by pretending we aren’t autistic.

Mr. Spock Was Autistic

No one is normal but some of us are different.

In order to see our differences, we tell stories like Rain Man.

Raymond was so different it was possible for everyone to recognize him. He was our cousin, brother, son, parent.

The film used a sympathetic slant to show how neurotypical Tom Cruise learned how to be less of a jerk by helping someone “disabled.”

It was a shocker to everyone that a “disabled” person was still human and — gasp — even “smart.”

Autistic characters are everywhere.

We have Willow from Buffy the Vampire Slayer — the nerdy girl who dressed badly and got constant verbal abuse from Cordelia, the popular yet vapid ‘normal’ girl.

We have Spock, the egghead alien who was logically astute but emotionally clueless, tormented by his half-breed nature — neither at home with his human nor Vulcan self.

Characters and real people who don’t “fit in” make groundbreaking contributions to culture and our survival as a species. Einstein, Turing, Curie, Newton, Darwin, Edison, and all the less famous but equally brilliant artists, writers, and innovators.

How many were HSP, or autistic, and why do labels matter?

Why I Chose Autistic over HSP

Something didn’t smell right.

When I read the HSP book, I felt the author was understating how difficult my life has been.

She spoke of success. She is a successful professional, whereas I’ve never found work to be a safe place.

The HSP documentary with Alanis Morisette didn’t help me relate. Sensitive girls become artists and you, too, can get famous by leaning into your superpower!

It felt like a lot of self-help aimed at white women: try harder and believe in yourself, girls!

But what if you aren’t musically gifted, tall and statuesque, lucky and supported, creative and famous?

What if you sing, and people hear a frog croaking?

I related to the autistic label because although I’m very bright, I’ve often been treated as stupid.

The IQ tests were infrequent, given to me in numbers I could understand, from adults. I believed them (because I am autistic, and also once looked gullible up in the dictionary) until decades of failure and exhaustion made me question why I’d been labeled “gifted.”

The social tests were informal, daily, relentless, and disorienting, and came at me from all sides. They came from my peers and I knew they had my number, but they didn’t involve numbers I could measure.

I don’t read between the lines, because I’m autistic.

Others were running once around the track. I was running a slow mile, and they passed me up and won. I kept running, thinking I’ll get faster!

I got tired.

The HSP book doesn’t confront the mental health crises this “trait” engenders, mostly for women.

Social deficits devour self-esteem. If you are female you must learn to get it right, but you are exquisitely aware every social scene is a stage, a performance, and a test.

This creates anxiety. Don’t let your guard down.

Social mistakes are wounding. If you are female, you must apply a tonic. You will cling to others, get a therapist, or get on meds. You will do those things anyway because most autistics can’t handle more than one or two relationships at a time.

This creates depression. Why can’t I get help?

Being “sensitive” isn’t a trait like being outgoing, funny, athletic, artistic, energetic, or kind.

Nope, it’s a problem. You might even be the very worst, an unpopular girl.

The HSP book doesn’t acknowledge that most of us feel broken while putting on a smiling face.

Some autistics turn sensitivity into an identity or a high-paying career: artist, actor, nerdy computer programmer, mad scientist, goth singer.

But most of us are wounded, angry, and ready to march in the streets (except we’re autistic and that’s too many people).

So I choose autism because it better reflects how I’ve tried socially and failed and calling it sensitivity throws the ball, once again, back into my court. And I’d pick it up and play, but I fell for that trick already.

A Fancy Label Is Everything and Nothing

Reading an interview with the actor Anthony Hopkins made me realize the conundrum of labels.

He was diagnosed with “Aspergers” (a designation for higher IQ autistic people and/or HSPs) in his early 70s.

He noted that his strategy in life was largely due to recognizing his differences early.

He noticed he was slower in school, so he worked harder and focused on small details.

When Hopkins was a schoolboy, the people who were recognized as autistic were severely impaired, often suffering from additional issues such as low IQ or communication problems, and almost always male.

So he dove into one of the hardest professions out there: artist. In my experience, being an actor is a good choice for an autistic person because doing a lot of acting is a daily occurrence. He didn’t achieve fame until he was well into his 40s.

Hopkins called Asperger’s a “fancy label” that didn’t change his own approximation of himself.

Yes, we have a label problem — but labels can help us learn. They can inform rather than pathologize or patronize.

I wish the HSP/autistic community could shake hands and start working together. After all, it might just be that HSP is a broader, kinder slice of reality on the spectrum of abilities.

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Jean Campbell is based in Hot Springs, Arkansas. She has been writing on Medium for years and recently published her first novel, Down and Out on the Road South, with Wings ePress. She is serializing the first part of her second book, City of Lies, on Substack.