The Age Problem: Why focusing on Autism across the lifespan is so important (and so rare)

The Problem We Don’t Talk About

Autistic adults don’t exist. Or at least, that’s how it feels when you go looking for support as an Autistic person.

Most organizations that describe Autism are really describing it in children, and most “symptom lists” are framed for caregivers rather than Autistic adults seeking clarity. This isn’t surprising when you look at the history: Autism research and diagnostic criteria were built around children for decades, beginning with early case descriptions that focused on young children and their parents rather than Autistic inner worlds (Kanner, 1943).Embryo Project Encyclopedia

Support for Autistic people is still imagined primarily through behavioral therapy aimed at modifying children’s behavior. Even services that adults could benefit from—like occupational therapy or speech-language therapy—are far more accessible in pediatric settings. For many Autistic people, support simply stops at 18. School-based services end, and adult resources are scarce or difficult to qualify for. Research has described this abrupt drop in available support as a “service cliff,” with nearly 40% of young adults on the spectrum receiving no services at all after high school.PMC

Underneath all of this sits a widespread assumption:

If someone reached adulthood without a diagnosis, they must not be “severe enough” to actually be Autistic.

But this assumption is not supported by current science. Adult diagnosis is common, especially among women, gender-diverse people, and those who masked or were misinterpreted in childhood. Increasing awareness, broader diagnostic criteria, and the concept of the spectrum have all revealed what some researchers describe as a “lost generation” of Autistic adults who were missed entirely when they were young.The Lancet

How We Got Here: The Child-Only Autism Story

There are many reasons why the public conversation about Autism became so tightly focused on childhood, and much of it starts with how Autism was first understood.

In early clinical writing, Autism was sometimes seen as overlapping with or nested under ideas about childhood psychosis or childhood schizophrenia.Embryo Project Encyclopedia

Then another idea took hold: the belief that Autism was caused by cold or neglectful parenting. Bruno Bettelheim’s book The Empty Fortress popularized the “refrigerator mother” theory, framing Autism as a reaction to emotionally distant caregivers.UO Blogs This theory has been thoroughly discredited, but it shaped public perception for decades and cemented Autism as something that happened to children within families, not as a neurotype people carry across their entire lives.

Because of these early assumptions, Autism was studied almost entirely in children. Early interventions centered on behavior modification, leading to the development of Applied Behavior Analysis (ABA) by Ivar Lovaas and colleagues. In parallel, Lovaas co-authored a 1974 paper on “behavioral treatment of deviant sex-role behaviors in a male child,” which is widely cited as a precursor to behavioral conversion efforts aimed at gender and sexuality.PMC A few years later, his 1987 paper reported that intensive behavioral treatment could bring some Autistic children within the “normal” range of IQ and school functioning.PubMed

Underneath these approaches was a clear belief: Autism was something to be cured.

That belief persisted well into the 2000s. Public attention was drawn to now-retracted vaccine research—most notably Andrew Wakefield’s 1998 paper in The Lancet claiming a link between the MMR vaccine and Autism. The paper was later found to be fraudulent and was fully retracted; extensive research has since confirmed that vaccines do not cause Autism.PMC Still, the idea that Autism was an avoidable tragedy lingered in public discourse, reinforced by books and programs promising to reverse or reduce “Autistic behaviors” through diet, supplements, or intensive interventions.

The cultural imagination continued to treat Autism as a childhood condition: something recognizable early, treatable early, and ideally “fixed” early.

But then Autistic people began speaking up.

Survivors of ABA named the harm they experienced. Autistic advocates organized within disability justice and neurodiversity frameworks, published widely, and pushed for Autistic-led research. Autistic scholars introduced new models—such as Damian Milton’s “Double Empathy Problem”—that reframed Autism from the perspective of lived experience rather than deficit.Taylor & Francis Online

At the same time, genetic research revealed that Autism is deeply woven into our development and biology. Large-scale studies have shown that Autism is highly heritable and associated with many common and rare genetic variants, rather than a single cause or a simple environmental trigger.Nature These findings reinforce what Autistic people have long said:

Autism is not something that disappears, cures, or gets trained out of someone.
Autism is a neurotype that exists across our lifespans.
It is part of the human experience.

The Hidden Assumption: “If You Were Really Autistic, Someone Would Have Noticed in Childhood.”

One of the most persistent myths about Autism is the idea that if someone truly were Autistic, it would have been obvious in childhood. This assumption is usually rooted in stereotypes—narrow, outdated ideas about what Autism looks like and who can be Autistic. And those stereotypes are rarely grounded in good research.

The truth is that many clinicians, even compassionate and well-trained ones, never received meaningful education about Autism. In graduate programs for therapists and psychologists, Autism is often barely mentioned or skipped altogether. Medical training isn’t much better. Most providers end up learning about Autism informally, through limited clinical exposure or whatever continuing education happens to cross their path. If someone isn’t Autistic themselves, it becomes very easy to accept surface-level information without examining it with a critical eye—especially when the “official” frameworks they were taught never invited them to look deeper.

And no one asks about how we feel.

For decades, behaviorism shaped the field’s understanding of Autism, focusing attention on outward behaviors and how they compare to neurotypical norms. Autistic people were observed, categorized, and analyzed through the lens of what we did—not why we did it, not what we experienced internally, not how it felt to be in our bodies and in the world. The curiosity was almost always directed at correction rather than understanding. Little attention was paid to the function of our behaviors, or how deeply they are intertwined with sensory overload, emotional regulation, and our efforts to navigate a world that often asks us to move faster, quieter, or differently than we actually can.

If you turn to psychodynamic and psychoanalytic traditions, the picture often isn’t much better. Autistic people were historically described as lacking a theory of mind or empathy—framings that stand in stark contrast to the lived experiences of many Autistic adults. In reality, many Autistic people experience a kind of hyperempathy: absorbing other people’s emotions, noticing microexpressions others overlook, and struggling to untangle where our own feelings end and someone else’s begin. We often feel so much that we must learn how to contain it.

It remains a mystery to me why more clinicians are not fascinated by Autistic inner worlds. From a psychodynamic perspective, our minds are rich, layered, and textured—an entire landscape shaped by sensory intensity, deep pattern recognition, emotional saturation, and self-protective strategies that were built quietly over a lifetime. And yet, because so much of the field has focused on childhood behavior instead of adult experience, many practitioners simply never learned to look inward with us.

This is the hidden assumption:
Adults can’t be Autistic if no one noticed earlier on.

But the truth is much simpler:
No one noticed because they weren’t taught how to look.

What Gets Missed: Masking and the Children We Never Saw

One of the biggest reasons Autistic people reach adulthood undiagnosed is masking.

Masking is a survival strategy, not manipulation, as many Autistic people often worry. Many Autistic children learn it early, especially those who grow up in unsafe, unpredictable, or socially overwhelming environments. When you’re Autistic, you often have to develop complex skills to navigate conversations, anticipate other people’s emotions, or minimize your own needs to avoid conflict. For many of us, learning to do this wasn’t optional. It was how we learned to stay safe.

This is a common story. Autistic people are, by nature, more vulnerable to harm: misunderstood needs, sensory overwhelm in chaotic environments, adults misreading our behavior, or peers targeting us because we stand out. Many Autistic adults later describe childhood as a place where their inner worlds were rarely recognized and their needs were routinely unmet. Over time, masking becomes a way to protect ourselves in spaces that don’t know how to protect us.

When adults look back, they often recall having meltdowns and being labeled “too emotional,” “dramatic,” or “bratty.” Sensory sensitivities were dismissed as pickiness. Food aversions—likely ARFID—were framed as bad behavior that caused stress for caregivers. Perfectionism or rigidity were interpreted as “being bossy” or trying to control others. Distress was misread as defiance. The need was never seen as a need. Instead, the need became the problem.

Children learn quickly what parts of themselves create conflict, disappointment, or punishment. So they adapt. They repress. They swallow their discomfort, quiet their stims, and manage their overwhelm alone. For some, this turns inward: they become the silent, private child who retreats to their room, who learns to take up as little space as possible. For others, the overwhelm breaks outward: they’re labeled rebellious, difficult, or “a handful,” when in reality they were chronically overwhelmed.

Masking is the thread that ties all of this together.
It hides the more obvious signs adults are trained to look for.
It hides distress through overfunctioning and isolation.
It lets children blend in just enough to be missed.

And because masking often works, at least on the outside, many Autistic people spend decades believing that nothing was wrong except themselves. That they were dramatic, too sensitive, that they were the problem.

Masking didn’t mean they weren’t Autistic.
It meant they learned ways to survive.

Why Later-In-Life Diagnosis Matters So Much

For many Autistic adults, the first spark of recognition comes from watching someone else get diagnosed or hearing Autistic people describe their experiences online. Something resonates, and a familiar ache or pattern appears. The pieces that never made sense begin to fall into place.

Most adults I’ve met who self-identify as Autistic have spent years—sometimes decades—quietly learning about Autism long before they ever speak it out loud. Many know more than their assessors. I’m often delighted when a client teaches me something new, offering a concept, perspective, or nuance that deepens the conversation.

There is something powerful about seeing yourself reflected in others after a lifetime of feeling different. We learn our patterns by watching other Autistic people name theirs. And then, in turn, we become the mirror for someone else.

Learning about Autism later in life can be profoundly life-changing. Suddenly, the random quirks or coping strategies you thought were uniquely strange begin to make sense. The sensory overwhelm. The way you process emotion. The patterns in how you relate to others and the world around you. What once felt alien becomes human. What once felt like personal failure becomes a neurotype. Instead of being “too much” or “too sensitive,” there is finally language for your experience.

But alongside the relief, there is grief.

Grief that no one noticed.
Grief for the years spent confused, exhausted, or ashamed.
Grief at realizing how obvious it feels in hindsight, and wondering why teachers, doctors, and therapists never saw it.
Grief for what you didn’t receive—the support, understanding, or protection you needed.
Grief for the knowledge coming so late.

A later-life diagnosis doesn’t erase the past, but it does transform the story. It gives you a map where there used to be fog. It helps you name your needs, honor your patterns, and soften the self-blame you carried for so long.

It reminds you that you weren’t broken, or dramatic, or difficult.
You were Autistic.
You just didn’t have the words yet.

When Autism Is Diagnosed in Childhood — The Story Doesn’t End There

It’s easy to imagine that being diagnosed in childhood would spare a person the confusion or grief that so many late-diagnosed Autistic adults describe. And sometimes that’s true. Sometimes a childhood diagnosis means having a caring IEP team, a classroom with sensory supports, an occupational therapist who understands your body, or a speech therapist who helps you communicate in ways that feel good. Sometimes it means having adults who truly see you.

But just as often, it doesn’t.

For many Autistic children, school is the most painful environment they will ever have to endure: unpredictable routines, constant sensory overwhelm, bright lights, loud hallways, social hierarchies, shifting rules, cafeteria food that feels inedible. And when school ends for the day, instead of rest, they may be taken directly to more therapy—more social demands, more correction, more pressure to behave in ways that feel foreign or impossible.

To come home exhausted from trying to survive an environment that was never built for you, only to be asked to mask harder for an adult who is trying to shift your behavior… it’s not something any child wants. And yet this is the reality many Autistic children grow up with, even when they are “identified early.”

For others, support exists only while they are in the school system. Once high school ends, the scaffolding collapses. Services tied to education fall away. Adult services may be fragmented, difficult to access, or available only in narrow settings like job training programs or assisted living. What remains is a profound uncertainty about the future—for Autistic people themselves and for the families who love them.PMC

And if there is one thing Autistic people often long for, it is to know what will happen next.

A childhood diagnosis may give a name early on, but it doesn’t necessarily give understanding. It doesn’t guarantee dignity. The supports and scaffolding don’t automatically follow the child. Many adults who were diagnosed young tell me that no one ever explained Autism in a way that made sense to them—only in ways that made sense to adults around them. Their diagnosis was something used to manage them, not something that helped them understand themselves.

Later in life, they often have to reclaim that diagnosis, reinterpret it, and rebuild their identity from the inside out. The story that began in childhood must be rewritten in adulthood—not because the diagnosis was wrong, but because so many things were framed around the external environment and rarely explored their internal experiences or identity.

What Needs to Change

We now know that Autism is a neurotype. It is not a problem to solve, a deficit to eliminate, or a set of behaviors to correct. It is a way of moving through the world. A way of sensing, relating, processing, and expressing. It is who we are.

We also know that the things Autistic people do—the stimming, scripting, the need for routine, predictability, and sameness, the deep focus and passionate interests—are not random or pathological. They are regulating. Protective. Meaningful. They make sense when you understand the sensory, emotional, and relational realities of an Autistic nervous system.

And we know, too, that being diagnosed in childhood or in adulthood does not automatically guarantee support across the lifespan. Services disappear. Providers lack training. Systems don’t follow us into adulthood. The world is not yet built with Autistic adults in mind.

So what needs to change?

We need people to listen to us.
We need researchers who study Autism to actually talk to Autistic people—and to work alongside Autistic researchers.
We need medical providers and mental health clinicians to learn from Autistic adults, not from outdated frameworks or purely behavior-based models.
We need training programs, CEUs, consultations, and supervision that center Autistic expertise.

We need social programs built with us, not just for us. That means asking what our needs actually are, understanding how they are (or aren’t) being met, and designing supports that grow with us across the lifespan.

We need people to start learning from Autistic people, not merely about us.
We need people to be curious instead of corrective.
We need people to be kind instead of skeptical.

Autistic adults have always been here.
It’s time for the systems around us to grow up, too.

References & Further Reading

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.autismtruths.org

Bettelheim, B. (1967). The Empty Fortress: Infantile Autism and the Birth of the Self. Free Press.UO Blogs

Rekers, G. A., & Lovaas, O. I. (1974). Behavioral treatment of deviant sex-role behaviors in a male child. Journal of Applied Behavior Analysis, 7(2), 173–190.PMC

Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3–9.PubMed

Wakefield, A. J., et al. (1998). Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. The Lancet, 351(9103), 637–641. (Retracted.) See also coverage of the retraction and subsequent analyses.PMC

Shattuck, P. T., et al. (2011). Post–high school service use among young adults with an autism spectrum disorder. Archives of Pediatrics & Adolescent Medicine, 165(2), 141–147.PMC

Lai, M.-C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013–1027.The Lancet

Grove, J., et al. (2019). Identification of common genetic risk variants for autism spectrum disorder. Nature Genetics, 51(3), 431–444.Nature

Milton, D. E. M. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & Society, 27(6), 883–887.Taylor & Francis Online