iiinova — where your digital self keeps evolving

Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 01/10/2026

I wrote “How Far Is Far Enough?” about being diagnosed autistic later in life, after years of pushing through things I didn't understand. Maybe you'll see some of yourself in it too. 🎵 More of my music: tinyurl.com/PatriciaMacD...

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 01/10/2026

“Up in Flames” was inspired by what happened to Haitian-Canadian writer Thélyson Orélien. It’s about how easily an online allegation can become a verdict overnight, and how an unproven accusation can destroy a reputation built over a lifetime. 🎵 More of my music: tinyurl.com/PatriciaMacD...

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 23/09/2026

Yes. Regulation doesn’t necessarily mean stopping an emotion. It can mean managing its intensity or how we respond to it. But I was thinking more about how understanding an emotion doesn’t automatically give us control over it.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 23/09/2026

Understanding an emotion and regulating an emotion are different processes. Knowing why you feel something doesn't necessarily give you the ability to stop feeling it.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 22/09/2026

Genetics doesn't determine when someone will be diagnosed, and many other factors still matter. But there was enough of a genetic signal for researchers to conclude that age of diagnosis isn't ONLY about who happened to get noticed first. 8/8

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 22/09/2026

This research suggests there may instead be multiple, partly overlapping roads. Different genetic influences and developmental trajectories may help explain why autism becomes recognizable at very different ages. 7/8

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 22/09/2026

Imagine autism isn't one road. Maybe we aren't all travelling down the exact same road, with some people's autistic traits noticed at 4 while somebody else keeps going until 15, 30 or 50 before anyone recognizes what's going on. 6/8

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 22/09/2026

And this is important: that does NOT mean a late-diagnosed person “became autistic” later. It means autism may not follow one single developmental path where everybody starts at essentially the same place and the only difference is when somebody notices. 5/8

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 22/09/2026

In the later-diagnosed group, some difficulties became more pronounced as children got older, particularly around adolescence. The genetic pattern associated with later diagnosis also overlapped more strongly with ADHD and some mental-health conditions. 4/8

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 22/09/2026

Researchers also found different patterns in how difficulties developed over childhood and adolescence. In the earlier-diagnosed group, autistic social and communication differences tended to be more apparent relatively early in childhood. 3/8

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 22/09/2026

For a long time, one explanation for late diagnosis has been pretty simple: we're all dealing with the same underlying autism, but some people's autistic traits are more obvious in childhood, while others are subtle enough to be missed. 1/8

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 22/09/2026

Sometimes we just want a friend we don't have to pretend we aren't autistic around.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 11/09/2026

Maybe the answer isn’t being social or being alone. Maybe it’s finding the amount of human connection that nourishes us without overwhelming us.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

At what point did “I don’t want to” become a more acceptable reason than “this is genuinely difficult for me”? And why did so many of us learn that difficulty wasn’t enough reason to say no?

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

And this can create another conflict. You may have learned a rule: you endure discomfort without making it somebody else's problem. So when somebody else openly refuses discomfort, one part of you can judge them for violating the rule - while another part thinks, Wait. You're allowed to do that?

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

That’s very different from saying demanding behaviour is somehow better than autism. It isn’t. But socially, people may interpret confidence and entitlement as personality- “Oh, that’s just how they are”- while interpreting an invisible limitation as negotiable: “Come on, you were fine last time.”

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

And there's a paradox in that: The better you become at hiding the difficulty, the less believable the difficulty can look when you finally ask for consideration.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

Meanwhile, someone who has spent a lifetime being taught don’t complain, don’t inconvenience anybody, smile, cope, push through can become extraordinarily capable of looking as though they don’t need anything.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

This person didn't feel they had to prove they had a legitimate reason. They wanted something, stated the boundary, and expected other people to deal with it.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

And then there’s something else: why do people have more tolerance for someone being demanding or spoiled than for somebody having a genuine limitation? For example, someone can simply say, “No. I don’t want to. I’m not doing that. I don’t want to be inconvenienced. Someone else can do it.”

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

But if you go to a restaurant Saturday, appear perfectly fine, and then say on Tuesday, "I really can't handle that tonight," somebody can think: "What do you mean? I saw you do it." They saw the performance, but not the energy expenditure.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

And I think that is one reason autism can be so misunderstood. People tend to understand inability much better than variable capacity. If you couldn't tolerate a restaurant ever, people might say, "Okay, she can't do restaurants."

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

Sleep, stress, sensory load, predictability, familiarity, how much you've already done that day, whether you can leave when you want to, who you're with - all of that can change how much capacity is available. Something you handled Tuesday can genuinely be much harder Thursday.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

So "I can do it" and "this is easy for my nervous system to do" are not the same statement. That's also why autistic functioning can look maddeningly inconsistent.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

A neurotypical person is doing plenty of processing too. The difference isn't that they're sitting there neurologically doing nothing. It's that more of those processes may be sufficiently automatic or less taxing for them.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

.. figuring out what someone means rather than merely what they said, regulating your own reactions, and perhaps consciously or unconsciously making sure that you look okay while you're doing all of it.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

In a noisy restaurant, for example, the brain may be dealing with the sound of dishes, overlapping conversations, music, lighting, smells, physical sensations, figuring out when to speak, filtering one person's voice from everything else, monitoring facial expressions...

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

That's part of what Doherty's "speaking neurotypical" comparison is getting at. And with autism, it isn't necessarily one extra task...

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

But that doesn't necessarily mean their brain is processing French exactly as effortlessly and automatically as their native language. They may be monitoring grammar, interpreting idioms, searching for words, translating certain things, watching the other person's reactions - all incredibly quickly.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

Think about speaking a second language. If someone becomes extremely fluent in French, you might listen to them for an hour and have absolutely no idea it isn't their first language. They can do it...

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

Autistic limitations can work differently because a lot of them aren't an absolute “this function is unavailable.” They're much more like “this function is possible, but expensive.”

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

If the capacity exists, why isn't it simply available the way it seems to be for somebody else? Think of someone who can't walk. We understand that limitation: they can't walk. With autism, we may do something sometimes, not at other times - and even when we can, we need to recover afterward. Why?

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 02/09/2026

This had me thinking: If an autistic individual can do the thing, why does doing the thing sometimes cost so much? Why can you go into the restaurant, have the conversation, work in an office, smile, make eye contact, behave appropriately - and then need to recover?

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 01/09/2026

The question worth asking is: How do we keep autism diagnosis rigorous without excluding people whose disability is partly hidden by masking, intelligence, language or achievement? What we see from the outside isn’t the whole story. 7/7

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 01/09/2026

I think of it like looking at the stars. Better telescopes didn’t create more stars. They allowed us to see stars that were already there. Better recognition of autism doesn’t mean more autism. It means we’re finally seeing people we missed before. 6/7

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 01/09/2026

Doherty compares the rise in autism diagnoses to left-handedness. Once people stopped being forced to suppress left-handedness, its recorded prevalence rose. There weren’t suddenly more left-handed people. We simply became better at recognizing what was already there. 5/7

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 01/09/2026

She’s a successful doctor who lectures publicly, yet describes sensory overload so severe she temporarily couldn’t access fluent speech. Someone’s abilities in one environment don’t necessarily tell us what they can manage in another. 4/7

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 01/09/2026

Doherty describes being able to “speak neurotypical” almost like speaking a second language. You can become very good at it. But being good at appearing socially comfortable doesn’t tell anyone how much effort it takes. 3/7

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 01/09/2026

Frith’s concern is diagnostic precision. Doherty’s concern is what happens if we narrow autism around traditional outward presentations: we risk excluding people who mask, communicate well, have careers, or whose difficulties aren’t immediately visible. 2/7

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 01/09/2026

An interesting article about autism researcher Uta Frith, who argues that the autism spectrum has become so broad it risks losing diagnostic meaning. Autistic physician Dr. Mary Doherty disagrees, their debate raises an important question about who gets missed. www.thetimes.com/life-style/h... 1/7

Preview of a Times article titled “I’m a top doctor and I’m autistic. I know why diagnoses are up,” featuring a photo of Dr. Mary Doherty in blue medical scrubs. The preview says she argues the rise in autism diagnoses is not inflated.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 01/09/2026

When someone appears socially capable but is paying an enormous invisible price to function that way, should diagnosis be based on what the clinician can see — or on the person's lifelong internal experience as well?

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 29/08/2026

Some days, the hardest part of being a writer isn’t writing. It’s trying to get the work seen.

Image of a screenplay titled “Beyond Shadows” by Patricia MacDowell beside a pen and a coffee mug reading, “Write. Query. Hope. Repeat.” Written on the screenplay: “Another query. Another rejection. Keep going.” Text reads: “Creative industries are brutally oversupplied, subjective and relationship-driven. You can create great work and still never get the opportunity for anyone to see it. From the outside, you can feel like a single grain of sand on an endless beach, not because the work isn’t worth discovering, but because discovery itself is so difficult. So you send another query, get silence, get rejected, and somehow manufacture hope to do it all over again.”

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 26/08/2026

Never assume someone isn't struggling or doesn't need support just because they are masking well.

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 26/08/2026

Autistic individuals often have to work harder because our natural ways of processing and communicating don’t always fit what’s considered “normal.”

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 26/08/2026

The contradiction isn’t that we’re inconsistent. It’s that we can have conflicting needs at the same time. Structure AND freedom. Predictability AND stimulation. Rest AND movement. Focus AND escape. And sometimes, we’re simply caught between them. 7/7

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 26/08/2026

And when our abilities fluctuate, we can become our own harshest critics. We remember what we accomplished yesterday and wonder why we can’t do it today. We think: I know I can do this. So why can’t I just DO it? 6/7

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 26/08/2026

This is one reason AuDHD can be missed. We may appear capable, organized or productive while using an enormous amount of energy just to keep everything functioning. People see what we manage to do. They don’t see what it costs us to do it. 5/7

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 26/08/2026

We can hyperfocus for hours on something that captures us, yet feel completely unable to begin a task we genuinely want or need to do. That inconsistency is often mistaken for laziness or lack of effort. But being able to do one thing doesn’t mean we can simply make ourselves do another. 4/7

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Patricia MacDowell (Human Being) @actually-autistic.bsky.social · 26/08/2026

Our sensory needs can contradict each other too. Noise, light, touch or movement can overwhelm us at one moment — and at another, we may actively seek stimulation. What helps us regulate today might be unbearable tomorrow. Our needs aren’t always fixed. 3/7

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