Diagnosed as an Adult

For about 20 years, Kiki Rakowsky tried to unearth the root cause of her panic attacks, disorganization, and analysis paralysis, which stopped her from finishing school and made her life feel increasingly difficult. Originally diagnosed with anxiety and PTSD, ADHD only came onto her radar in her 40s—in part because the Instagram algorithm clocked her interest in ADHD-related memes. “I started to feel like, wow, these posts are posting at me.” She broached the possibility in therapy and was eventually diagnosed with ADHD and dyscalculia, a math-related learning disability.

Emboldened by diagnoses that fit, Rakowsky went back to school at age 44. “At the beginning of this semester, I was sitting in my math class crying,” she says. By the end, she had scored a 95 on her final and an A- overall. “I thought my life was ruined; now I have a 3.94 GPA,” she says. “When I got my grades, the first person I called was my therapist—I just cried and said, ‘Thank you so much.’”

As a girl growing up in Adelaide, Australia, Erin Bulluss spent a lot of time in front of the mirror. Driven neither by vanity nor a dislike of her appearance, she instead sought to replicate and master the facial expressions and social niceties that her peers all seemed to decode and deploy with ease. If she heard a laugh she liked, she practiced that, too.

Yet her mimicry rarely amounted to much. “I got so much wrong socially”—though exactly what, she couldn’t always say; sometimes she knew an interaction had turned sour only when she was later uninvited from a birthday party. “It felt like everyone else knew something I didn’t—like no one had given me the memo.” She retreated into herself, speaking to few people and often only in a whisper when she did.

It wasn’t until her 30s that Bulluss’s lifelong social challenges—along with other symptoms like intense interests and repetitive behaviors—were recognized by a doctor as autism spectrum disorder. Receiving the diagnosis “felt like a celebration,” an affirmation that she wasn’t just difficult or boring or awkward.

But months later, grief set in. “I realized, Oh, some things are always going to be hard”—dealing with the sensory overload of a grocery store, expressing her emotions to nonautistic loved ones. “The way the world is set up and the way my brain functions—there’s just a mismatch.”

Her emotional roller coaster might sound familiar to the growing number of people who first learned that they had a lifelong mental health or neurodevelopmental condition—such as autism, ADHD, or bipolar disorder—as an adult. While a diagnosis often feels like discovering a long-missing puzzle piece, it can also trigger a kind of reckoning. Questions—Why didn’t I know sooner? Could my life have been different?—can feel all-consuming.

Integrating a diagnosis into one’s identity can be a long and sometimes painful journey. But on the other side often lies the self-acceptance that many late-diagnosed adults have long struggled to achieve.

Why Now?

Across all age groups, diagnoses of neurodevelopmental disorders, such as ADHD and autism, have risen steadily for decades. Recent years have seen notably sharp increases, especially among adults.

One 2019 study found a 123 percent increase in adult ADHD diagnoses over a 10-year span; another found that, in a sample of 400,000 adults, autism prevalence more than doubled between 2011 and 2019. And some evidence suggests that the pandemic drove many to finally seek a diagnosis—for one, prescriptions for ADHD medications surged from 2018 to 2022, especially among women and adults ages 20 to 39.

While some long-term conditions like bipolar disorder may, in fact, not manifest until adulthood, symptoms of neurodevelopmental conditions, including autism and ADHD, typically do first appear in childhood. Indeed, per the Diagnostic and Statistical Manual of Mental Disorders (DSM), a diagnosis should be granted only if symptoms were present in the first decade or so of life. Yet for many adults—even those whose childhood symptoms seem crystal clear in hindsight—the possibility that they might have autism or ADHD was not raised until well past their teen years. Why were their early symptoms ignored, minimized, or overlooked?

For many, the transition to adulthood was itself the catalyst that turned symptoms from inconvenient to truly unmanageable, says Scott Shapiro, an NYC-based psychiatrist who specializes in adult ADHD, CBT, and productivity coaching. The structure and support provided by parents and teachers can serve to lessen or even altogether hide a child’s academic or social challenges, often all the way through high school.

Yet “as they go off to college and then to the workforce, a lot of the scaffolding they had is removed,” he says. At the same time, responsibilities and demands increase. Expected to hold a job, maintain a social life, and perhaps care for children or aging parents, adults with neurodevelopmental disorders can find themselves adrift and overwhelmed. At that point, “the challenges that were perhaps masked at an earlier age may start causing problems,” Shapiro explains.

Symptoms may not only become more visible with time; they may, in fact, also worsen. Early episodes of bipolar disorder, for example, tend to be milder and more responsive to treatment than subsequent episodes; if teen or young adult mania goes untreated, it’s likely that later episodes will be harder to manage. Increasingly destructive bipolar symptoms can thus be a double-edged sword: They can wreak havoc on an individual’s life—yet their escalating nature may be what finally secures a life-changing diagnosis.

Following years of increasingly erratic behavior, Gregg Martin, a now-retired two-star Army general, was only diagnosed with bipolar disorder after his boss, the Chairman of the Joint Chiefs of Staff and the nation’s highest military officer, gave an ultimatum: Resign and get a psychiatric evaluation or be fired. He chose the former, though the psychiatrist he saw cleared him for duty. “Over the next four months, I spiraled, then crashed into a total breakdown—mind, body, spirit—and went into crippling severe depression and psychosis.” He forced himself back to the doctor, where he finally, at age 58, learned that he had bipolar type 1 with psychotic features.

For women, more likely than men to be diagnosed with a neurodevelopmental disorder later in life, gender likely plays a key role. Both autism and ADHD are stereotypically seen as boys’ disorders—the former is nearly four times as common in boys as it is in girls, the latter nearly twice as common, the CDC reports. In part, this is because early research on the conditions focused primarily on boys, whose symptoms shaped how the disorders were conceptualized and understood.

It’s a problem not just of bias but of visibility. The symptoms that are indeed more likely to appear in boys—hyperactivity for ADHD, intense niche interests for autism—also tend to be the most readily observable by adults. Girls, meanwhile, tend toward subtler internal symptoms, like distractibility, and autistic girls in particular are more likely to engage in “masking,” compensatory strategies aimed at helping them appear neurotypical—all of which can make their symptoms easier to miss or dismiss.

“My brother was diagnosed with ADHD when we were young because he was acting out—hyperactivity, anger,” recalls Allie Jaynes of Toronto, who was herself diagnosed at 36. Yet her own symptoms of forgetfulness and crippling disorganization were glossed over. “My parents knew that I was losing stuff all the time, that I was scattered and disorganized. But they were like, That’s just how she is”—even as her confidence plummeted and her anxiety spiked. “I spent so much time trying to hide my problems; everywhere I went, I was waiting for people to find out how deficient I was.”

Such feelings of deficiency aren’t a given for late-diagnosed individuals, but neither are they uncommon. One research review from the Journal of Attention Disorders found that women with undiagnosed ADHD scored lower on self-esteem and self-efficacy than non-ADHD peers; conversely, a study in the journal Autism found that individuals who received a diagnosis in childhood felt better about themselves than those who did as adults. Sharp fluctuations in self-esteem are common in untreated bipolar disorder, with self-worth usually at its lowest during depressive episodes.

That lack of self-worth, which may begin in childhood but last well into adulthood, can manifest in ways that, from the outside, look a lot like depression or anxiety. Indeed, it’s extremely common for adults to be diagnosed with one of these disorders before being diagnosed with ADHD, autism, or bipolar disorder, notes J. Russell Ramsay, a clinical psychologist and cofounder of the Adult ADHD Treatment and Research Program at the University of Pennsylvania.

These diagnoses aren’t necessarily wrong, he stresses; while true misdiagnoses can occur, it’s also possible for multiple conditions to coexist. But often, late-diagnosed individuals find that the “depression” or “anxiety” label is incomplete. Even if mood-related symptoms abate somewhat, a major underlying cause—often the inadequacy and stress caused by the still-undiagnosed disorder—remains obscured.

And without a conclusive explanation for why so much feels so hard, some adults with undiagnosed ADHD, autism, or bipolar disorder retreat into self-criticism and shame. “I felt that if I just beat myself up more and more, then I wouldn’t lose valuable things, or be late, or screw something else up,” Jaynes says. A journalist, she often passed on jobs she wanted, convinced she could never work fast enough to succeed.

Gregg Martin always felt blessed by seemingly superhuman energy, enthusiasm, and drive. It propelled him through West Point and the ranks of the Army; sent to MIT to get a master’s, he returned with two—and a Ph.D. “My mind was like a high-speed computer,” he recalls. “I could accomplish much more than what the Army told me to do, or what most humans even could do.”

Martin’s vigor, it turned out, came not from mere good fortune but from undiagnosed bipolar disorder. He hovered in low-level mania until the Iraq War, when the pressure of commanding 10,000 troops tipped him into a full-blown manic state. He barely slept, moving ceaselessly around the battlefield, seemingly everywhere at once. “I felt like Superman—like I was bulletproof.”

Afterward, he fell into his first deep depression, starting a cycle between higher highs and lower lows that ended with his being removed from duty—and securing the diagnosis and treatment he’d needed. “Bipolar disorder helped me enormously—but it also could’ve killed me,” he says. “After being so low for so long, I’m really just happy to be alive.”

Relief, Recognition, and Regret

When a clinician finally hits on the explanation that makes sense, the relief for late-diagnosed adults can be overwhelming. If they’re lucky, their sense of self shifts rapidly and decisively for the better.

“The diagnosis is what finally made me stop beating up on myself,” Jaynes recalls. It triggered the realization that what she lacked was not willpower but tools to manage her challenges. She shared her newfound ADHD status freely, thrilled to have an explanation for why she was the way she was. “I’m more ready to reach out for help when I’m stuck, instead of just letting it loop in my head forever,” she says. Her anxiety, though not fully eradicated, “doesn’t have the same grip.”

Similarly, learning his diagnosis filled Martin with a deep sense of gratitude—not just toward the doctor who saw the signs others had overlooked, but toward the boss who made the tough call to remove Martin from his post. “People didn’t want to hurt me, so they treated me with kid gloves—but they didn’t take the hard actions that were necessary to diagnose and treat what was wrong with me.”

Research indicates that the majority of newly diagnosed adults share this sense of recognition, gratitude, and relief, at least to some degree. Yet feelings of frustration, disappointment, anger, or sadness may not be far behind; across several studies exploring late diagnoses of autism and ADHD specifically, between 30 and 50 percent of participants reported negative emotional responses, including regret for lost time, that often occurred concurrently with more positive reactions.

Megan Neff of Portland, Oregon, diagnosed with autism at age 37 and ADHD shortly after, remembers an immediate wave of catharsis and delight, a sense of finally being free. “All of a sudden, I understood that I’m not broken. My brain is different. I had something that explains everything; I never thought I’d get that.” And unlike diagnoses she’d cycled through in years past, autism felt fundamental to who she was, “like a part that weaves through all the parts,” she says. “It was an identity shift.”

But those heady emotions were quickly followed by a wave of sorrow. “All those years that I could have known,” she says, were instead spent feeling incompetent and struggling with self-harm. “I always felt like I had so much potential, but for so long I had no idea how to harness it.” She mourned for the future, too, for the sensory limits she would always have and the challenges she was likely to face going forward. “I was holding liberation and self-acceptance in one hand and grief in the other.”

Grieving what could have been, while normal and relatively common, can in some cases start to feel all-consuming for many late-diagnosed individuals, notes Vanessa Bal, an associate professor and the director of the LifeSPAN ASD Lab at Rutgers University. “It turns into a negative spiral,” she says. This may be further compounded by pressure, felt by some late-diagnosed adults and often exacerbated by social media, to move rapidly to self-acceptance, Neff says. “But the grief isn’t going to magically disappear.”

Bal encourages patients to focus less on what could have been and more “on how they want this diagnosis and knowledge of themselves to affect their future.” When that feels easier said than done, it may be useful to channel those negative emotions into compassion—both toward oneself and toward those who missed the signs—and perhaps even look for a bright side of a late diagnosis.

Ludmila Praslova, a professor at Vanguard University in Costa Mesa, California, spent nearly five decades trying to understand why seemingly simple things—hearing loud music, driving on the freeway—made her want to cry or vomit, or even triggered thoughts of suicide. At age 48, she finally got her answer: She is on the autism spectrum.

Knowing earlier would’ve been preferable, certainly. “If I’d been diagnosed in my 20s or 30s, I wouldn’t have had to try different antidepressants for years and years,” she says. Much of her career was spent in companies with no understanding of neurodivergence; being aware of her diagnosis might have empowered her to choose more inclusive environments, she speculates.

But it’s possible to mourn missed opportunities without looking back in anger, she’s found. “Very few people my age got diagnosed as children. The research just wasn’t there.” Born in Moscow to poor, working-class parents, Praslova’s childhood was characterized by poverty, chaos, and familial trauma. “My parents just wouldn’t have known what to do—and you can’t hold people responsible for things that they had no way of knowing.”

Acknowledging this has helped her to see her late diagnosis as a sort of blessing. “I don’t think I would’ve taken the risks I did, in my education and career,” she says, if she’d been diagnosed in childhood. “And all of the crud I’ve been through, like being mistreated at work, informed what I know now.” Today, Praslova’s research and writing focus on how companies can create truly inclusive spaces—not just for neurodivergent people, but for everyone. “Everything we’ve been through makes us who we are.”

Though Jacey Criswell was a straight-A high school student, college always felt out of her reach. “I could understand everything in my mind—but as soon as I tried to explain anything, or isolate a thought, it was just a mess.” An unexpected scholarship changed her tune—but a year into her college career, she was on the verge of giving up. “Other people who didn’t seem to try were doing fine; I was putting my all in, and it wasn’t helping. I felt so depleted.”

An ADHD diagnosis in her sophomore year changed her perspective: “It wasn’t that I wasn’t smart enough or had tried so hard for nothing.” With treatment, traits that once felt like obstacles started to feel like superpowers. “My mind has always liked to think of everything all at once”; now, she can recognize those moments of overstimulation, strip away what’s irrelevant, and see the big picture. “The process used to feel paralyzing,” she says. “But in the past four years, I’ve gotten incredibly decisive.”

Moving Forward

Ultimately, whatever someone pulls out of the postdiagnosis emotional grab bag—whether joy, regret, gratitude, anger, or relief—their reaction is OK and perfectly normal, Shapiro emphasizes. “There’s no ‘typical’ path; everyone has a very individual reaction.”

Fortunately, research suggests that even the most labyrinthine postdiagnosis paths end happily more often than not. In literature reviews looking at either autism or ADHD, self-acceptance and an increase in self-esteem following an adulthood diagnosis are consistent themes; diagnoses, on the whole, tend to reduce self-blame and increase feelings of control. Most of the studies are relatively small and qualitative in nature, but the findings are promising, Ramsay says. “There might be some back and forth, but at least in the data we have, it seems that almost everybody gets there.”

Yet not everyone moves at the same pace, and those individuals who struggle with lingering feelings of shame may find their path to be rockier than others. Shame caused by untreated autism or ADHD often first takes hold in childhood or adolescence, fueled by feelings of being “lazy,” “stupid,” or otherwise defective; individuals with bipolar disorder often report feeling shame for hurting loved ones while in the throes of mania.

Shame, whatever its source, can be sticky and is unlikely to disappear the moment a diagnosis is granted. But taking steps toward letting it go, with the help of a therapist if needed, is essential to the healing process, Shapiro says. “I really believe that if you don’t address the shame, it can keep the person from reaching their full potential.”

Simply learning as much as possible about the condition one has been diagnosed with, and the various ways it can manifest, can have a surprisingly positive effect on self-esteem. “ADHD is not a character flaw—it’s a neurodevelopmental disorder that can cause significant challenges across a lot of realms of a person’s life,” Shapiro says. With his own patients, “going through the narrative of how ADHD has impaired their lives up until this point can help people with this core belief that they’re unworthy or defective.” The same goes for any other previously undiagnosed disorder.

The process, like any kind of unlearning, takes time and patience, but many late-diagnosed individuals, especially those who pursue therapy or other evidence-based treatment, feel that progress came quicker than they expected. Says Neff, just a few years postdiagnosis: “I’m at a place where when shame bubbles up, I’m like, There you are, old friend. I catch it, name it, and then can distance myself from it pretty quickly.”

How much space a diagnosis takes up in one’s identity might also naturally evolve over time. “In the first few years, it was so much of my identity,” says Neff; she came out as autistic on social media and began speaking publicly on neurodivergence and inclusion. “Now, I’m at a point where I feel safe to put it a bit in the background, so I can expand and create space for other aspects of my identity.”

Some late-diagnosed individuals have found that finding a therapist who shares their diagnosis—an increasingly common thing for therapists to disclose—is particularly valuable. This is perhaps especially true in the case of autism. “There’s some really interesting cross-neurotype research that suggests that autism is not a communication deficit but a difference,” explains Neff, herself a psychologist. One 2020 study, for example, found that autistic people scored higher on rapport in conversations with other autistic people, compared to those with neurotypicals; in fact, autistic pairs had even better rapport than non-autistic pairs. Diagnosis-specific support groups, whether online or in person, can be helpful for this very reason.

Neurodiverse or not, effective therapists should approach late-diagnosed adults not from a deficit framework but from one that both acknowledges their challenges and celebrates their (many) strengths. “My ADHD brain? I love its creativity, its expansiveness,” says Neff. “My autistic brain? I love how fascinated it becomes; it can get lost for hours in research, and it has an unquenchable thirst to understand and know things.”

Above all, a diagnosis can give someone permission to finally unmask their authentic self. “Now, I can focus on making genuine connections with people who enjoy the same things I do, rather than trying to adhere to social expectations I didn’t understand,” says Bulluss. “I can carve out a life that’s Erin-shaped, rather than try to fit a mold that’s not the same shape as me.”

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