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Diagnosis changed my life because it changed how I see myself.

Formerly, I saw myself as a broken human. Now, I see myself as a different human—a critical distinction.

I have unusual social instincts and needs and reactions, and now I can trace them to specific autistic traits.

Autism doesn’t relate to everything about me, but it relates to a lot. Diagnosis helped me realize my deck is stacked a certain way. I don’t need to beat myself up over it. It’s just the way I am.

But it was only through diagnosis that I came to this self-acceptance. I didn’t earn it through a meditative journey or deep journaling; it didn’t come from the five years of therapy I did in my early thirties. It was the flip of a switch, a post-intermission Act 3, a reopening after change in ownership.

This makes my shift to self-acceptance seem binary: no, and then yes. It’s not quite that simple, but it’s close. About as close to simple as the messy headspace of self-regard can get.

If diagnosis allowed me to accept myself, what would denial of diagnosis have done? I fear it would have deepened my feeling of defectiveness. That I couldn’t even fit with the misfits.

That’s the problem when self-acceptance rests on an external trigger. The person with the authority to diagnose holds a lot of power.

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Within the autism community, there’s significant backlash to the idea that “everyone is a little autistic.”

But I believed a version of that statement long before I seriously considered I might be (fully) autistic. I used those exact words, “a little autistic,” in self-deprecating jokes to my husband as I groaned over social obligation and became insensibly annoyed over minor transgressions by colleagues or neighbors.

It was only when I better understood what autism really is that I saw how much it fit me.

By the time I booked my assessment, I was convinced. In my case, the idea that you can be a “little autistic” was a stepping stone to self-realization.

As it happened, my psychologist agreed with me. But it could have gone differently.

Because in the end, the question of diagnosis is an examination of how autistic you are. Are you a little, or are you a lot? Only if you cross an impossibly slippery line—a line calibrated differently depending on the psychologist—will you receive a diagnosis.

Some people sail over that line. Others may tip just over it, or fall a hair short. The diagnostic assessment is a binary: yes, or no. Either you are or you aren’t.

Mine came back yes, and where exactly I landed on the other side of that line should be irrelevant. But I do wonder.

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Now that I’m a regular on the autism forums, I see adults, often women, post about being denied a diagnosis. A handful of examples:

“I’m crushed. The psych told me she can’t offer me a diagnosis because I am able to maintain relationships despite fulfilling literally every other requirement for a diagnosis. I told her throughout […] that maintaining relationships and making friends is and always has been difficult for me, but I’ve learned the steps and I know that relationships are important. I force myself to maintain relationships, it doesn’t come naturally. I’m just so frustrated.” (link)

And:

“No autism because I have friends? The lady [...] said she wouldn’t assume I have autism because I have friends and can feel empathy for my sister. [...] She also said that it doesn't really make sense to diagnose people ‘like me’ anyway, because it wouldn’t change anything for me. [...] I keep finding more symptoms in my research and I have scores in the clinical range on each of the tests that is available. [...] I don't think they are even open to other forms of autism other than the ‘classic’ picture or don’t have the capacity to diagnose everyone of their clients properly. I am so frustrated because I waited so long and then I didn’t feel I was being taken seriously.” (link)

And:

“It basically took me two years to find a psychiatrist whos even willing to write a referral to an ASD clinic and then another year on the waiting list and waiting for the results. This wednesday I finally got my results […] and they basically diagnosed me with everything under the sun except for autism. I knew this could happen so I was prepared to challenge them instantly on all the criterion/symptoms that can only be fully (and best) explained by an ASD diagnosis and they literally shrugged and said I was a highly sensitive person LOL. I am still processing since I cannot believe the ignorance and lack of information (and interest) in how autism presents in AFAB people. They even told me I cant be autistic because I can make eye contact. Are you clowns or doctors lol what is happening?” (link)

The reasons for denial concentrate around themes: you can’t be autistic if you have friends or a romantic relationship, if you graduated college, if you’re a teacher or nurse or other professional, if you’re smart. If you have empathy.

The official term for that is bullshit.

Although it’s true that self-diagnosis is accepted within the autistic community (as part of a general “no gatekeeping” principle, one of many reasons I have immense pride in and respect for this community), self-diagnosis and diagnosis are different things.

Autistic people generally have a low threshold for uncertainty. Gray areas and ambiguities are not just regrettable, they can cause distress. We’re also uncomfortable with things that feel like deception. We strive, compulsively, for truth.

So when I see responses to the forum posts above saying: just self-diagnose, that’s perfectly valid, I agree in theory, but I also see it as an imperfect solution.

Because even if people accept your self-diagnosis, you still remember the denial. And that creates a disconnect, an internal tension, that can grate at you and fester over time.

Perhaps, given that a professional denied you a diagnosis, calling yourself autistic makes you feel like a fraud. Like you’re pretending, or you don’t belong. Maybe not completely, but a little bit. Which is enough to reprise the lifelong cycle of self-rejection you’re trying to break free from.

Sometimes, the forum posters who were denied diagnosis are asked why they’re seeking a diagnosis in the first place, as if that sorts it out.

That question always confuses me. It’s my nature to want to know as much as possible, especially about myself. To resolve uncertainty. So why wouldn’t I seek a diagnosis from a professional if I thought I was autistic? Not all autistic people feel this way. But many of us do.

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To top it off, a vocal Autism Purity Army has emerged to complain that people like me are misdiagnosed. Their vitriol especially targets women who think they’re autistic but are not deemed to meet diagnostic criteria.

There’s one really offensive person calling herself the “Antifeminist Psychiatrist” (she’s apparently licensed!) who argues that adults seeking diagnosis are just narcissists who want to bypass accountability for their offensive behavior—and, horror of horrors—to celebrate their “quirks.”

I try not to give her airtime, but Substack keeps feeding me her “antifeminist,” pseudoscientific garbage. And rather than mute her, I’m magnetically pulled to the comments, where I correct misinformation as calmly as I can (calmly, so as not to fuel this narcissism fever dream).

I also comment for the women who wrote those forum posts, and the ones who could have. The ones who recognize their struggles as autistic but are denied the label, with the implicit message that no, you’re just bad at this.

If they see her post and the derisive comments piling on, I want them to also see my pushback.

I want to tell them: I see you. I know you’re struggling. You’re not broken.

You are the only expert on what it is to be you.

And you deserve the same permission and acceptance that diagnosis has given me. I hope more than anything that you find it.

If you have a diagnosis journey you’d like to share, or a question about diagnosis, please drop a comment or send me a DM. You’re very welcome here.

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• When you see yourself in your child—and start worrying for two

• "I can't make it sincere enough": Karen Read, Amanda Knox, and the performance of innocence

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Stay curious,

Laura

Is autism really exploding? It can feel that way—diagnoses have skyrocketed, social media brims with self-disclosures, and headlines warn of an autism epidemic. But the reality is that we’re getting better at seeing what’s always been here.

Continue reading for seven evidence-backed reasons why it feels like autism is everywhere.

When I was diagnosed with autism at 39 and told one of my oldest friends, she was underwhelmed. Why? She felt like autism was everywhere. The latest trend. Another one of her friends had recently shared that she suspected she was autistic, too.

It’s strange to feel like my neurodivergence is part of a trend, and my friend’s reaction has been at the back of my mind ever since.

After my diagnosis, I made it my mission to learn everything I can about autism. I’ve come to understand why it feels like autism is on the rise. Because diagnosis is more prevalent these days. Not because autism itself has increased, but because we’re seeing it more clearly.

Here are seven research-backed reasons why it feels like autism is more common. While I’ve sourced data from the United States, similar trends are happening worldwide.

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1: Autism has expanded beyond kids to include adults

It’s not that people today are different. It’s that the definition of autism has expanded to include more people.

When Leo Kanner published his first systematic description of autism in 1943, it was limited to children. He had glimpsed something real, but he was standing on the deck of a ship seeing only the tip of the iceberg.

Since then, research has revealed that autism extends deeper into human populations and is linked to a broader array of traits.

Most impactfully, autism is not just a childhood condition. Between 2011 and 2022, diagnoses among US adults aged 26-34 increased 450%. (Source: Harvard Medical School).

2: Diagnostic substitution reclassifies older labels

Many people diagnosed with autism today would have received diagnoses in the past—but for different conditions, such as intellectual disability (ID) or personality disorders. While you can have autism and ID or a personality disorder, in some cases these were misdiagnosed, and the reversal of that trend is called diagnostic substitution. (Source: Penn State University via Education Week).

As autism understanding evolved, many people who in years past would have been diagnosed as something else are now being diagnosed with autism.

Want proof?

Check out the diverging trendlines for autism versus ID diagnosis from 2000-2010:

3: Reduced gender bias reveals more women & non-binary people

For years, autism screening tools were based on male presentations and resulted in a 4:1 male-to-female diagnosis ratio. That meant non-male cases were being missed. Today, that gap is narrowing.

When screening tools in research settings are adjusted for gender bias, the male-to-female ratio approaches 1:1. (Source: University of Minnesota).

4: Improved detection in minority communities

Historically, minority children have been under-diagnosed relative to their white peers for a number of reasons. That disparity is starting to improve.

Between 2011 and 2022, the CDC reports that autism diagnosis increased at higher rates for minority children (defined as Black, Asian, American Indian or Alaska Native, and Hispanic children) compared with white children. This doesn’t mean the absolute numbers were higher, but it means the gap is beginning to close. (Source: JAMA Network).

The same trend was not seen for adults during the same period, however. A large disparity still exists for adults, suggesting that a large number of minority adults are under diagnosed.

5: Universal pediatric screening catches more cases, earlier

The American Academy of Pediatrics first recommended universal autism screening for children in 2007, and that recommendation is slowly being adopted. When you look for something more often, you find it more often. Not because it’s spreading, but because we’re paying better attention.

A recent randomized trial showed that pediatric offices with universal screening found more instances of autism and at younger ages than those offices without it. (Source: Drexel University).

6: Practical incentives drive more assessments

As more programs are created to support autistic people, there’s more reason to go through the trouble of getting a diagnosis. Studies have found that autism diagnoses tend to cluster in geographic regions where there’s available community support.

This makes sense, as in the US there’s a cost to getting a diagnosis, both in terms of out-of-pocket expense (free assessments are hard to access) and the time and disruption to already difficult daily lives. (Source: Academic Pedatrics journal).

7: Lower stigma encourages exploration

Many parents and adults were once reluctant to pursue diagnosis for fear of judgment or discrimination. That trend has reversed as increased openness and acceptance of neurodiversity has made it feel safer to seek answers without fear of ostracism.

While the situation is improving, stigma still remains a significant issue for autistic people. (Source: Frontiers in Psychiatry).

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Looking for more to read? Check out these past posts:

• My autistic special interests: the fire that burns itself out

• What we know about genetics & autism

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Stay curious,

Laura

Carl Linnaeus, Leonardo da Vinci, and Emily Dickinson are three eminently different historical figures, but they share a key trait: they were relentless systemizers.

Linnaeus, the father of taxonomy, famously created the classification system we still use today. Leonardo’s lifelong pursuit was to find a universal pattern that linked nature at every scale: from the proportions of the human body, to the heavenly bodies in the cosmos. Dickinson’s unique poetic grammar is well known; less understood is her use of rigid communication systems to maintain a highly active social life.

I’ve been examining their lives as part of my historical figures project. Toggling between their stories and modern autism research, I came across a concept I hadn’t encountered before: intolerance of uncertainty (IU).

As I sifted through the research, I started to suspect that the concept of uncertainty—and its opposite, certainty—may be a hidden key to autism.

And a way of seeing the systemizing tendencies of Linnaeus, Leonardo, and Dickinson in a fresh light.

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First, a brief history of the concept.

Intolerance of uncertainty first gained traction in the 1990s, primarily in research on generalized anxiety disorder. Psychologists Michel Dugas and Robert Ladouceur were instrumental in defining IU as a dispositional characteristic (i.e., a trait) resulting from a set of negative beliefs about uncertainty and its implications. They argued that people high in IU perceive uncertain situations as stressful and threatening, which leads to worry and avoidance behaviors.

As the concept proved robust in generalized anxiety disorder research, in the 2000s-2010s IU began to be investigated across a range of disorders, including OCD, social anxiety disorder, and depression.

In the 2010s, researchers began to study IU in autism. They found that autistic people often show:

• Elevated baseline IU scores (link to study)

• Correlations between IU and sensory sensitivity, after controlling for anxiety (link to study)

A key finding was that IU may mediate the relationship between autism and anxiety, meaning that the distress many autistic people experience in unpredictable environments might explain their high rates of anxiety.

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An episode from my past shows just how profoundly intolerance of uncertainty has shaped my behavior.

It was Thanksgiving, and I was visiting my then-partner’s family. We weren’t staying with them—we had a hotel room in a nearby city—and the day stretched into night. His siblings and their families trickled out. Still, we remained, sitting with his parents in what I experienced as awkward, trying small talk. I wanted to ask when we’d be leaving, but doing that in front of his parents would have been rude.

As the minutes passed, my unease mounted. It wasn’t just social fatigue; it was the not knowing. If I knew that I had to withstand 30 minutes, an hour, two hours more, I could mentally prepare. But not knowing how much longer I would be there, expending energy playing my social role, was agonizing. Even painful.

When his parents stepped out of the room and we had a brief private moment, I erupted. Why hadn’t he checked in with me about our plans? Why didn’t he tell me when we’d be leaving? I thought the lack of a definitive plan was inconsiderate. From his perspective, I was displaying my trademark inflexibility. Why couldn’t I just go with the flow?

In truth, we were caught between competing values. I prize clarity. I assume others do too, so I communicate timelines and expectations as a form of care. He prized flexibility, and assumed others could ride the moment just as easily as he could. Neither of us was trying to be inconsiderate, and we were frustrated by our inability to understand the other’s behavior.

Back then, I didn’t see any of this. I just knew I felt trapped at his parents’ house. My autism diagnosis and linked insights have given me the perspective I once lacked.

This episode mirrors what researchers have increasingly found: intolerance of uncertainty plays a major role in autistic anxiety.

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But I suspect IU reaches even deeper than that. I see potential links to a number of traits, including ones central to my own experience: compulsive curiosity and the drive to uncover patterns.

Autistic special interests are well-documented, often described as intense, absorbing, and detail-focused. In a previous post, I wrote about mine, and particularly how they burn hot and then fizzle out. As I returned to that post while writing this one, the comments took on new resonance:

• One reader wrote, “the challenge of the learning curve is what keeps me hooked, but once the curve flattens and it’s all about maintenance, the interest fades.”

• Another described the beginning of a special interest as “a rocket ship taking off,” but said once it “levels off […] the really good stuff is over.”

• A third noted, “if I ‘know’ how to do the whole thing perfectly, it’s as good as done, and I don’t need to struggle through the uncomfortable mess of actually doing it!”

Each was circling the same explanation: curiosity fueled by an intense phase of understanding, and disinterest once a certain level of knowledge was reached.

That’s when it hit me: Could IU be at play here too?

But “intolerance” of uncertainty feels like the wrong frame. What if what animates these special interests isn’t the discomfort of uncertainty, but the satisfaction of resolving it? A positive pull rather than an aversion.

Maybe what draws us to a special interest is the potential to dispel uncertainty. There’s a mystery to solve, a wilderness to tame.

Leonardo’s vanishing drive

Leonardo da Vinci first caught my attention because of his tendency to abandon works. It reminded me of my own cycle of intense but fleeting fascinations.

The pattern was clear: a burst of deep engagement, followed by disinterest. For instance, Adoration of the Magi—one of his most iconic works—was a study for a more complete painting that never materialized.

Often, what he turned to instead were intellectual pursuits driven by his own curiosity, not a patron’s commission. Leonardo’s voluminous notebooks, which we still have today, brim with ideas on patterns of waves and water, engineering and construction methods, reflections on shadows and human anatomy.

Let’s apply our reader-derived special interest theory to Leonardo: perhaps once he had mentally solved the core problems of a painting, its pull vanished. He’d resolved the uncertainty. The mystery was gone, and so too was his interest. In grabbing the Adoration image for this post, I was intrigued to see the Uffizi’s description of its unfinished state:

Leonardo took the development of the work to different stages: some of the characters are barely sketched out, while others, as if to grasp an idea, are more finished.

This was a recurring pattern for Leonardo; the historical record is dotted with complaining patrons trying to track him down. In a letter to a noblewoman inquiring about her long-overdue portrait, an acquaintance wrote: “He devotes much of his time to geometry, and has no fondness at all for the paintbrush.” After performing some initial work on her portrait, he had moved on—never to return.

To an outsider, it looked like flakiness. But if IU or its inverse—the desire to make the uncertain, certain—was a driver of his creative pursuits, then he may have left the work once he figured out how to solve its core problem. Knowing the solution was what mattered. Execution for its own sake, once the path was clearly mapped, was trivial.

There’s a direct correspondence between Leonardo’s pattern of rotating special interests and my own (not, of course, concerning their impact on the world…).

This certainty/uncertainty model offers interpretive lenses for other historical figures, too.

Carl Linnaeus: order above all

Carl Linnaeus, for all his avowed empiricism, sometimes sacrificed truth in service of a larger goal: preserving the coherence of his classification system. When empirical facts clashed with his framework, he was known to ignore them.

“Without the system,” he wrote, “chaos would reign.” For him, imposing order took precedence over sticking strictly to facts. What mattered in this framework was not that his system was empirically sacrosanct but that it imposed a close-ended order, without gaps.

He also treated dissent from his system as a kind of betrayal. Students who spread his method over Europe were his “disciples.” Those who questioned it were treated as traitors.

Is there an autistic resonance in Linnaeus’s thin-skinned reactivity? Perhaps. It’s tempting to invoke links to vulnerable narcissism or Rejection Sensitive Dysphoria.

But there may be something more elemental: a defense of the system not only because it’s “mine,” but because it’s the moat between order and chaos. Question the framework, and you reintroduce uncertainty. Depending on your tolerance for uncertainty, that can feel painful. A state to be avoided, even at the cost of social relations.

Emily Dickinson: controlled communication

Emily Dickinson’s poems weren’t just artistic expression; they were part of a tightly choreographed communication system. They were often sent with letters to her intimates, forming part of her overall message.

While she’s remembered as a recluse, she was in fact intensely social—just not in person. She built deep relationships entirely through letters, short notes, and poems, even with people who lived nearby.

Dickinson maintained regular and frequent social contact. For instance, she wrote to her brother’s family next door every day, sometimes several times a day.

If she desired social connection, why did she avoid face-to-face encounters? In one letter, she explained her preference this way: “A Pen has so many inflections and a Voice but one.”

Live conversation was uncontrollable and unpredictable. Limited as she was to a single “Voice,” she couldn’t play with different registers of delivery, and her communications could be painfully misconstrued. She would also have to extemporate, robbing her of the chance to be deliberate with her words. In-person communication was a blunt instrument. Writing allowed calibration, nuance, and control. Through it, she was able to impose rules on the chaos of social interaction.

I suspect that’s why many autistic people sometimes prefer asynchronous or text-based interaction, as well as one-on-one socializing over groups. I certainly do. In one-on-one settings, I can have more influence in how things go. Control allows prediction. Prediction reduces uncertainty.

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The more I reflect, the more this framework holds explanatory power for autism. For instance:

• We engage in ritual and routine not just to soothe, but to reduce unpredictability to a manageable level.

• We pursue interests not just out of passion, but for the satisfaction of rendering the uncertain, certain.

• We become stressed by sensory overload in part because we struggle to habituate (as I covered in a previous post), which means things become familiar to us less quickly.

• We teach ourselves things because only firsthand experience, rather than truths handed down by others, fully resolves our doubts.

• We find socializing difficult not just because we mask to fit in, but because it’s unpredictable, chaotic even.

What if a desire to create certainty, and an avoidance of the uncertain when we’re helpless to resolve it, is the hidden logic beneath many autistic traits?

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For a pattern seeker like myself, this hypothesis has the allure of something big, something fundamental. The idea that intolerance of uncertainty could link so many disparate traits into a coherent whole scratches an itch, in an immensely satisfying way.

Still, given the seductive power of elegant theories, a dose of caution is warranted. IU excites me because it promises to impose order on what can feel like a chaotic grab-bag of autistic traits. But perhaps that’s reason enough to be skeptical. Linnaeus, after all, reminds us how the drive to classify can sometimes sacrifice accuracy. (Though to his credit, his system did leave a lasting mark.)

Even so, my gut tells me there’s something here. I’m working now on developing this idea into a conceptual framework paper. My first attempt at writing for peer-reviewed publication! I’ll share a link once the preprint is live.

And because I can’t let go of the historical figures I’ve touched on here, I’m also exploring their stories more deeply for a nonfiction book on autism, pattern-seeking, and the minds history has misunderstood.

I’d love to hear—what role has uncertainty played in your life, in your patterns of behavior?

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Research cited in this post:

• Michel J. Dugas, Fabien Gagnon, Robert Ladouceur, Mark H. Freeston, Generalized anxiety disorder: a preliminary test of a conceptual model, Behaviour Research and Therapy, Volume 36, Issue 2, 1998, Pages 215-226, ISSN 0005-7967. Abstract link

• Keefer A, Singh V, Jang YS, Alon L, Surmacz M, Holingue C, Mostofsky SH, Vasa RA. Exploring the Symptom Profiles of Intolerance of Uncertainty in Autistic Children. J Autism Dev Disord. 2024 Jan;54(1):121-130. doi: 10.1007/s10803-022-05744-3. Epub 2022 Oct 13. PMID: 36227445; PMCID: PMC10097837. Full text link

• Neil L, Olsson NC, Pellicano E. The Relationship Between Intolerance of Uncertainty, Sensory Sensitivities, and Anxiety in Autistic and Typically Developing Children. J Autism Dev Disord. 2016 Jun;46(6):1962-1973. doi: 10.1007/s10803-016-2721-9. PMID: 26864157; PMCID: PMC4860201. Abstract link

• Jenkinson R, Milne E, Thompson A. The relationship between intolerance of uncertainty and anxiety in autism: A systematic literature review and meta-analysis. Autism. 2020 Nov;24(8):1933-1944. doi: 10.1177/1362361320932437. Epub 2020 Jun 22. PMID: 32564625; PMCID: PMC7539603. Full text link

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Stay curious,

Laura

In my last post, I described the feeling of “losing access” to parts of my life—of relying on others to fill in memory gaps, especially emotional and narrative ones. I now know these autobiographical memory deficits are common in autism.

But we haven’t talked about the reasons for it. Why do these life memory deficits exist?

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Since social processing is different in autism, you might theorize that we can’t remember life events because they’re expressions of the self—and more specifically, the social self.

Contrast your birthday celebration at age 9 with the fact that earth has four layers, which maybe you learned around the same time.

The former is an instance of autobiographical memory (a blend of semantic memory that relates to yourself as well as episodic memory of personally-experienced events); the latter is semantic memory alone (semantic memory is mostly just factual information, like state capitals or why composting is good for soil).

I’m far more likely to remember that the earth’s core is liquid1 than how I celebrated a birthday. (Writing this, I realize I can’t remember any specific birthday celebrations before age 13).

Research supports the social-deficit theory, and also points to sense-of-self deficits as the culprits.

For example:

• In 2020, researchers found that people with autism (without intellectual disability) tend to have a fuzzier sense of their own identity. They also found that autistic people were less likely to use autobiographical memory for social purposes, like sharing stories. They suggested that these findings explain why autobiographical memories—especially socially significant ones—are harder to access than factual knowledge.

• In 2017, another study found that autistic adolescents (without ID) had trouble recalling both components of autobiographical memory: semantic facts about themselves (like personality traits) and personal experiences (especially ones with emotional detail). The researchers suggested that differences in how autistic people process self-knowledge may help explain why some memories—particularly those with emotional or social meaning—are harder to retrieve.

Explanations rooted in self and social relationships would explain why I can’t remember specific conversations during my birthday celebrations, or even who attended them.

Yet I also don’t remember where these birthdays took place, what the themes were, what kind of cakes I had. Those are semantic memories: facts. It’s not obvious why birthday-related facts are irretrievable, when I can remember random facts unrelated to me (like most—but not all!—of Henry VIII’s wives).2

Which is why a recent research review suggesting an additional explanation is particularly interesting.

In 2023, a review of multiple studies proposed that an altogether different challenge may explain autistic autobiographical memory challenges: scene construction.

This refers to the ability to mentally recreate the visual experience of an event: what the place looked like, how things were arranged. For instance, researchers have found that even when social or self-specific elements were stripped away (like imagining a fictitious beach or museum), autistic people described scenes with less vividness and spatial detail. The same was true for the real events of autobiographical memory; the challenges spanned both kinds of scene visualization.

This suggests that scene construction deficits may help explain why specific events from personal memories are hard to access.

This problem may also affect future thinking and spatial navigation, researchers theorized, since those skills also rely on imagining detailed scenes.

(Some anecdata to ignore at your leisure: I’ve always been known within my family for having a poor sense of direction. I get lost or disoriented easily. The correlation between spatial navigation and autobiographical memory holds up in my particular case—I have challenges with both.)

Even when given strong prompts or visual cues, autistic participants still recalled fewer sensory and spatial details than non-autistic people.

To be clear: the scene construction theory isn’t a replacement for existing explanations. The researchers argue that it is distinct from—but likely interacts with—social and self-related differences, offering an additional explanation for why autistic people may struggle to recall specific life events.

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Why was this overlooked previously?

This is one of the most interesting parts of the theory, because it demonstrates how advanced technology can reveal that earlier conclusions may have been incomplete or based on flawed data.

Our brains’ “social” and “scene-construction” networks sit right next to each other. Which may explain why researchers previously overlooked this spatial dimension of memory in autism.

Take a look at this graphic:

The brain regions shown in (a) are the “canonical social processing regions, defined from large-group studies.” They are frequent targets of autism research.

The regions highlighted in (b) were more recently identified through advanced brain imaging, fMRI. This enabled more precise location targeting, and it reveals that “social regions (blue) are adjacent to, and often interdigitated with, regions involved in scene processing (red), with little apparent overlap (purple).”

If you compare the (a) and (b) images, you’ll see that some regions thought to be social processing are actually used for scene construction, not both.

The study goes on to observe that although the red and blue regions are functionally distinct (as shown by the dearth of purple, the overlap), “the two networks can nevertheless be difficult to disentangle at the group level.” That is, group-level research might mistakenly attribute a mental process to a social region of the brain because it wasn’t able to pinpoint the highly specific scene construction brain location at work, a mere hair’s breadth away. Averaging across brains blurs the resolution needed to distinguish between closely adjacent regions.

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With that, I’m curious: if you identify with poor autobiographical memory, what’s your experience specific to scene construction—for instance, spatial navigation?

As for imagining spaces, like the museum and the beach in the example, the findings were that autistic people had deficits on a relative basis (their scenes were less vivid and detailed than those imagined by non-autistic people), which is hard to form the basis of a self-report. But if you have insights on that as well from personal experience or otherwise, please share!

PS: Are you starting to feel like I post about deficits too much? I am too. The cool thing is that deficits are sometimes one half of an evolutionary trade-off, freeing up brain resources to create strengths in other areas. I’ll explore that aspect in future posts.

Did you enjoy this post? Ways to support my work—for free!

1. Subscribe for regular updates and 2. Tap below to heart this post so others discover it.

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Looking for more to read? Check out these past posts:

• What we know about genetics & autism

• When the DSM gets it wrong: vulnerable narcissism and autism

Research cited in this post:

• Romain Coutelle, Marc-André Goltzene, Eric Bizet, Marie Schoenberger, Fabrice Berna, Jean-Marie Danion. 2020. Self-concept Clarity and Autobiographical Memory Functions in Adults with Autism Spectrum Disorder Without Intellectual Deficiency. J Autism Dev Disord. 50(11):3874-3882. Read online.

• Sally Robinson, Patricia Howlin, Ailsa Russell. 2017. Personality traits, autobiographical memory and knowledge of self and others: A comparative study in young people with autism spectrum disorder. Autism 21(3):357-367. Read online.

• Anna M. Agron, Alex Martin, Adrian W. Gilmore. 2024. Scene construction and autobiographical memory retrieval in autism spectrum disorder. Autism Research 17(2):2024-214. Read online.

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Stay curious,

Laura

Debate over autism’s causes has been nonstop lately. A lot of misinformation is circling, which can happen with even the best of intentions.

This is especially true when it comes to genetics. The science is complex, the language is opaque, and public conversation often lags far behind what researchers are learning.

With so many competing claims in circulation, I wanted to understand for myself what the research actually says.

I’m not a geneticist, and I haven’t read every study. But I’ve now read dozens of them, and I’ve done my best to translate what I’ve learned into plain English.

Two genetic branches of autism

Autism’s genetic pathways can be put into two groups: the first are de novo mutations, and the second are polygenic variants.

Branch one: De novo mutations

Rare, high-impact, mostly spontaneous mutations

In the 2000s, researchers zeroed in on de novo mutations as a cause of autism.1

De novo means “new,” signifying that these are wholly new mutations. They were not inherited from the person’s parents.

These mutations are associated with intellectual disability such as severe speech and cognitive delays, as well as seizures and motor delay.

This is probably why they were discovered first: they have greater individual impacts than the polygenic factors we’ll discuss next.

The presence of a de novo mutation doesn’t mean a person will have autism. Researchers believe these mutations increase autism risk about 20-fold. In other words, someone with one of these mutations is about 20 times more likely to be diagnosed with autism than someone without.2

Initially, it was thought that these rare genes were entirely de novo (non-hereditary), but there is a wrinkle.3 Researchers have found some rare variants that are similar to the de novo mutations (in that they contribute to developmental delays), but these variants were inherited. This development somewhat complicates the two-branch story I’m tracing here, but these inherited variants are even rarer still. They remain more of a footnote than a challenge to the broader pattern.

Despite their dramatic effects in individual cases, de novo mutations are relatively rare. They don’t account for the majority of autism.

Branch two: Polygenic variants

Subtle, inherited variants that are found in the general population

In the mid-2010s, researchers discovered a polygenic basis for autism. Detecting these subtler genetic factors required large sample sizes and advanced statistical methods, which weren’t as feasible before.

A 2014 study4 articulated the shift that came about from this discovery:

Individual risk-associated genes have been identified from rare variation, especially de novo mutations. From this evidence, one might conclude that rare variation dominates the allelic spectrum in autism, yet recent studies show that common variation, individually of small effect, has substantial effect en masse.

These “common variations, individually of small effect” are the polygenic variants – poly denoting multiple.

Polygenic variants are inherited, in contrast with de novo mutations.

Notably, these polygenic variants are “normally distributed” in the population, “which means that some degree of common variant risk” for autism “is present in all of us.”5

(Which supports my first foundational principle: “We all (autistic and non-autistic alike) have the same traits, just to different degrees.”)

This kind of genetic risk accumulates like sediment. Some of the relevant genes are present in everyone walking around today. But if they become concentrated in a single individual, a presentation of autism emerges.

When the branches combine

Some people with autism have both bases — de novo and polygenic.

When this happens, there is a cumulative increase in risk.

For instance, one study found that 20% of autistic people with de novo mutations have contributing polygenic variants that, if they were absent, would have meant no presentation of autism.6

When we disentangle the branches

Researchers are becoming better at pinpointing the unique contributions of each genetic branch. Here’s how to understand the differences between the pathways:

De novo mutations:

• Are rarer among autistic people and the general population

• The statistically significant mutations are spontaneous (not inherited from one’s parents)

• Tend to have large, disruptive effects on early development

• Are often associated with more visible disabilities or higher day-to-day support needs

Polygenic variants:

• Are common across the general population

• Can contribute to autism when many such variants accumulate

• Are inherited from one’s parents

• Tend to shape cognition in more distributed, often subtler ways

• May bias development toward a different cognitive style, without necessarily resulting in developmental disruption

Categorizing these differences is not meant to imply a hierarchy. Both pathways shape how autism can look and feel.

As one study notes: “These differences strongly suggest that de novo and common polygenic variation may confer risk for [autism] in different ways.”7

New discoveries are being made as we speak

For a variety of reasons, what we think we know now will be adjusted as more research is conducted.

The polygenic variants are difficult to catalog

Although much progress has been made in understanding the polygenic basis of autism, researchers haven’t yet aligned on a definitive set of risk-related variants.

For starters, not all contributing variants have been identified yet. Since each variant by itself presents little risk of autism (it’s the cumulative effect that matters), it’s challenging to detect each contributing factor.

It’s also hard to say whether a variant has a big enough impact to count. It’s an exercise in line drawing. How much impact is enough to justify inclusion in the official set?

Researchers are focused on these issues now. For instance, the Psychiatric Genomics Consortium ASD Working Group is actively working on refining and validating the set of variants that are used to score polygenic risk for autism.

The more we learn, the blurrier the polygenic lines become

Many of polygenic variants associated with autism are associated with other polygenic traits or conditions – like ADHD and schizophrenia. For instance, 25% of polygenic risk factors for autism are shared with schizophrenia.8

This makes it impossible to isolate a set of gene variants that are purely related to autism. Instead, the picture is one of gradients between neurological profiles and conditions.

Some research also suggests that the traditional definition of autism warrants a second look. A 2024 study found that the three primary domains of autistic traits (which the researchers defined as social, communication, and restricted behavior) have only modest polygenetic correlation.

According to the researchers, this finding “suggests largely independent genetic effects may affect different autistic traits.”9

If true, this could suggest the diagnostic definition of autism is somewhat arbitrary, as it groups together traits that don’t deterministically co-occur.

There is still much to learn about de novo genes, too

All this focus on polygenic research is not to say that de novo mutations are fully figured out, either. Every year, multiple studies identify new de novo mutations that contribute to autism.10

Researchers are also uncovering new mechanisms for how these mutations contribute to autism, like the 2024 discovery of “butterfly effect” genes.11

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Why does all this matter?

It’s important to understand the genetic framework of autism for many reasons.

But one stands out right now: science is under threat.

The current U.S. administration is making drastic cuts to medical and scientific research, including autism research. At the same time, the Secretary of Health and Human Services has claimed, without evidence, that a genetic basis for autism is a “myth” and that pursuing this line of research is a “dead end.”

As I hope this post has shown, there is overwhelming scientific evidence that autism has genetic origins — plural. De novo mutations and inherited polygenic risk factors both contribute. And new discoveries are still being made every year, deepening our understanding of the autistic brain.

If we abandon research now, we risk shutting the door on future breakthroughs.

It can be hard to keep up. Genetic research is intricate and often buried in inaccessible language. But the science is there, whether politicians understand it or not. The more we can bring that knowledge into public view, the harder it becomes to erase.

Thanks for reading Strange Clarity, where I write about neurodivergence, cognition, and the hidden architectures of thought.

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With curiosity,

Laura