Yes, And: How Autism's most common co-occurring conditions can create an important diagnostic domino effect

Why get one diagnosis when you could get three or four?!

Welcome to The Late Diagnosed Diaries, the bi-weekly-ish musings of a late-discovered autistic author and speaker, former journalist, and eternally curious human, featuring educational explanations, critical explorations, and vulnerable realizations, all seasoned with a teeny little dash of feminist rage.

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By the time I went into the specialist’s office for my autism assessment, it was less of a “formal assessment” and more of a formality. When I was first referred, the next available appointment was nearly ten months away, and I spent probably nine-and-a-half months of that wait time researching.

I already knew I was Autistic going into it.

But that’s all that I knew.

• I didn’t understand that 50-70% of autistics also have ADHD, or that autistics are twice as likely to be diagnosed with OCD.

• I wasn’t aware that autistic women are at a higher risk than autistic men and the general population for PTSD, depression, eating disorders, and many forms of self-harm.

• I had no idea that there’s a high prevalence of hypermobility disorders in autistic women, or that autistics are at elevated risk of Postural orthostatic tachycardia syndrome (POTS), Mast Cell Activation Syndrome (MCAS) and food allergies.

• I hadn’t realized that people with autism are four times more likely to suffer from gastrointestinal conditions, or that 84% of autistic individuals also have some form of anxiety.

I didn’t know any of that.

But it turns out, there’s actually a pretty lengthy list of conditions that commonly co-occur in autistics, each of them bringing their own heightened risks and co-occurring conditions¹ with them.

And so, I had no idea that the confirmation I was Autistic would lead me down a path to several other diagnoses, with still more being uncovered years later.

Though, perhaps “uncovering” isn’t really the right word… It’s more like connecting dots: Dots that had always been there but in the wrong place, or dots that were connected to the wrong dots, or dots that lacked connections to whichever other dot would have given them new meaning.

(AI-generated image)

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Of the many follow-on diagnoses I received as a late-discovered autistic, the most impactful wasn’t revealed in my assessment. It came almost a year later.

I was in the office of an orthopedic specialist I’d been seeing for a few months about some mysterious pain in my left hand. The knuckles that connected my fingers to my palms ached constantly, and they often clicked when I bent them. Sometimes my fingers would get stuck, and stiffened in an awkward position.

My doctor was stumped, but he took being stumped as a challenge. We’d done x-rays, tried a variety of braces and supports, and a few kinds of PT, but nothing seemed to help.

“The only other thing I can think of is…” he trailed off during one appointment, shaking his head as if he knew his long-shot guess was wrong already. “Have you ever been tested for hypermobility?”

“No, but I have heard that hypermobility does commonly co-occur with Autism,” I said, “so I guess that would make sense.”

He looked up from his notes, surprised. “You’re autistic?” Suddenly, something clicked, and this time it wasn’t my fingers.

“Stand up! stand up!” he said, jumping up and excitedly waving me over to the center of the room. He began walking me through the Beighton Test² for hypermobility.

I met every single criteria: 9 out of 9.

“THAT explains it,” he said, sitting down finally satisfied at having solved the puzzle.

He suspected I had hypermobile Ehler’s Danlos Syndrome, a degenerative connective tissue disorder characterized by chronic pain as connective tissues wear down and fail to do what they were meant to. In the general population, hEDS is rare, but in Autistic women it’s much more common.

As my doctor put it, most people’s tendons and ligaments bounce back like a thick rubber band. But hEDS tendons and ligaments were more like a cheap hair tie: over time they stretch and get weak, no longer able to hold things together like they’re supposed to. This can cause dislocations, hyperextensions, and clicky joints like I was experiencing in my left hand.

As part of this process, I underwent genetic testing and had the hEDS diagnosis confirmed. The results were delivered by a genetic counselor with the unfortunate job of explaining that there’s no cure for hEDS, and helping me wrap my head around the fact that my condition would continue to worsen over time.

I talked in a recent post about the mind-bending experience of re-living your life post-diagnosis and seeing all kinds of really autistic things you didn’t before. This was like doing that all over again, but now with my sights set on my body instead of my mind.

Since childhood, simple scrapes or cuts would often take months to heal, and my bandages would often leave behind raw patches worse than whatever injury they were meant to protect. But nobody had ever put those things together as evidence of the sensitive and slow-healing skin of hEDS.

My internal injuries always lingered longer than professionals expected, too. Physical therapy rarely made much of a difference, and months-long courses of treatment would frequently end with a sort of defeated shrug on the part of my PTs. I shiver at the thought of all the co-pays I could have saved myself had I known that trying to rehabilitate those connective tissues was a fool’s errand.

So why am I sharing all this?

I know that my hEDS diagnosis likely wouldn’t have come without the Autism diagnosis coming first, and I also know that I’m not alone.

Given autism’s long list of co-occurring conditions, huge numbers of undiagnosed autistic women aren’t just unaware of their neurotype… they’re missing other vital health information, too.

Learning you’re autistic means knowing that you’re at a heightened risk for other conditions, which can help shorten other diagnostic timelines, the way my orthopedic specialist almost immediately identified hEDS as the cause of my hand pain once he learned I was autistic.

I was lucky. Most hEDS patients take nearly 15 years to get their diagnosis, often having up to 10 misdiagnoses in the meantime: everything ranging from anxiety, migraines, and ulcerative colitis, to fibromyalgia and multiple sclerosis.

As heartbreaking as it is to think about undiagnosed autistic women being unaware of their neurotype and unable to accommodate their sensory needs, the diagnostic domino effect of co-occurring conditions makes this fate even sadder and scarier.

There’s a good chance many of those undiagnosed women are also being treated for conditions they don’t have, not being treated for conditions they DO have, and being denied the ability to make accurate health decisions for themselves as a result.

When I experienced a hernia in late 2023, my hEDS diagnosis allowed my doctors to make safer-for-me choices about the surgical timing as well as the repair method and process. Without my autism diagnosis, and the hEDS diagnosis that followed, it’s fairly likely we would have made different decisions about the hernia that could have created far worse outcomes for me, in both the short term and the long term.

There are plenty of valid reasons why someone might not want to or be able to pursue a “formal” autism diagnosis, and it’s not my place to tell anyone what’s best for them.

But you don’t need a “medical” diagnosis to be aware of the increased risks of other conditions that commonly co-occur with autism.

The (perfectly valid) self-diagnosed autistics can still benefit from information on co-occurring conditions, using it to have more helpful conversations with medical professionals and to make better health decisions for yourself.

And if I can help a few women connect a few of those dots, then all that vulnerability will have been worth it. 💜

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Thanks for reading The Late Diagnosed Diaries. Here are some other ways to support this newsletter and its author:

1. I’m calling them “co-occurring conditions” instead of “co-morbidities” because it feels less depressing and judgmental to me. But technicallllly “co-morbidity” does imply a greater level of causality or connectedness, whereas “co-occurring” can just mean happening at the same time, regardless of connection.

2. Learn more about the Beighton Scale here.