Finding Yourself or Finding Autism? When Teens Hunt for Labels Online

My Office Diaries: Young Women Searching for Answers

Recently, a bright 19-year-old I'll call Emma sat across from me, her eyes pleading. "I've taken all these online tests. I match so many of the symptoms. I'm sure I have autism." It was our third visit, and I found myself in that uncomfortable position again—wanting desperately to give her the validation she craved, yet knowing professionally that she didn't meet the diagnostic criteria.

I've been seeing more and more young women like Emma in my practice lately. They arrive convinced they have undiagnosed Autism Spectrum Disorder. They've done their research—hours scrolling through TikTok videos, Reddit threads, and Instagram posts where others share similar experiences. They've found community there, and a framework that seems to explain why they've always felt "different."*

These moments take me back to a play I read in college: Six Characters in Search of an Author by Luigi Pirandello. In this groundbreaking 1921 work, six unfinished fictional characters interrupt a theater rehearsal, desperately seeking an author to complete their stories and validate their existence. Similarly, these young women come to me seeking a diagnostic "author" to make their narrative complete.

The Diagnosis Dilemma

I often feel torn when I sit across from these young women, seeing the hope in their eyes. Part of me wants to give them what they're searching for—to say "Yes, you're autistic," and watch the relief wash over their faces as they finally have an explanation.

But my responsibility as a clinician runs deeper than providing comfort. Getting this right matters.

When I evaluate someone for autism, I need the full picture—including their early childhood years. That's why I ask to speak with parents and sometimes even their pediatrician, since autism requires specific symptoms to be present from early development.

Autism Spectrum Disorder: What the Official Criteria Actually Say

To understand why so many young people might identify with autism but not receive a formal diagnosis, it helps to know what the official diagnostic criteria require. Here's what the DSM-5-TR (the diagnostic manual used by clinicians) says about autism spectrum disorder in plain language:

All of the following:

• Social interaction issues: Trouble with conversation flow, turn-taking, sharing interests/feelings

• Nonverbal communication differences: Unusual eye contact, difficulty with body language, facial expressions

• Relationship struggles: Problems making friends, adjusting behavior to different social situations

Plus at least two of these patterns:

• Repetitive behaviors: Hand-flapping, lining up objects, repeating phrases

• Need for sameness: Distress with changes, rigid routines, difficulty with transitions

• Intense specific interests: Unusual focus or knowledge in particular areas

• Sensory differences: Over/under-sensitivity to sounds, textures, lights, smells

Additional requirements:

• Early appearance: Signs must be present in early childhood, though they might not become obvious until social demands increase, or may be masked by coping strategies

• Significant impact: Symptoms significantly impact daily functioning

• Not better explained: Not better explained by other conditions such as intellectual disability

What makes diagnosis tricky? The same external behaviors can have completely different internal causes.

Take social disconnection, for example. Someone might appear awkward in conversations, avoid eye contact, and struggle with friendships—looking outwardly "autistic." But peer beneath the surface, and you might find intense social anxiety driving these behaviors. Their disconnection doesn't stem from a fundamental difference in how they process social information, but from paralyzing fear of saying the wrong thing, embarrassing themselves, or being rejected.

This creates a vicious cycle. The anxious person avoids social situations, which gives them fewer opportunities to practice social skills. Others perceive this avoidance as disinterest or oddness. The person then feels even more rejected and isolated, reinforcing their anxiety and making them appear even more "different"—despite having a fundamentally different underlying cause than autism.

These symptom overlaps create real confusion, both for the person experiencing them and for clinicians trying to make accurate diagnoses. When multiple conditions share similar external behaviors but come from different underlying causes, careful assessment becomes essential.

The TikTok Self-Diagnosis Explosion

The rise of #ActuallyAutistic, #AutismAwareness, and #NeurodiverseAndProud hashtags has created virtual communities where young people find belonging. Sarah, another patient, showed me her TikTok feed during a session—an endless scroll of creators describing sensory sensitivities, social anxiety, and communication struggles, all attributed to their "late-diagnosed autism."

"See?" she pointed to a video. "She's exactly like me. She got diagnosed at 22."

This social media explosion has real consequences. Young women are self-diagnosing in record numbers, often based on content created by peers and influencers who may themselves be self-diagnosed.

Why this trend? Several factors are at play:

• Finding Your Tribe: These teens desperately want to belong somewhere and understand why they feel different

• Quick Answers: Who wants to wait months for a specialist when TikTok offers instant explanations?

• Girls Left Behind: Traditional autism criteria were created by studying boys, leaving many girls undiagnosed

While self-diagnosis can be a valuable first step in understanding oneself, it also comes with potential challenges:

• Diagnostic Precision: Without professional assessment, it can be difficult to distinguish between conditions with overlapping symptoms

• Treatment Pathways: Different underlying conditions may benefit from different approaches to care

• Identity Formation: Building your identity around a specific diagnosis can be complicated if professional assessment suggests a different understanding

When It's Not Autism: The In-Between Group

Science is catching up to what I've been seeing in my office for years. Research shows there's a group of teens and young adults—especially young women—who don't quite fit existing labels. They identify as "neurodiverse," struggle with various types of anxiety, have strong sensory reactions (like being bothered by loud noises or certain textures), and face communication challenges. Yet they don't fully match the criteria for autism or other communication disorders.

A recent study from 2024 found distinct groups of young adults who show some autism-like traits alongside anxiety and sensory issues. Instead of fitting neatly into one diagnosis, their experiences overlap several categories.

Even more interesting, another study discovered that teens with high social anxiety—whether they have autism or not—share many of the same traits. These include difficulty handling uncertainty, trouble identifying their own emotions, and heightened sensitivity to sensory input. This suggests these traits aren't exclusive to autism but can appear across different conditions.

Additional research shows that sensory processing difficulties—like being overwhelmed by bright lights or scratchy clothing—are common in young people with anxiety and obsessive-compulsive disorders, even when they don't have autism. This further supports what I'm proposing: there's a distinct group of people whose experiences bridge multiple diagnostic categories.

The Female Autism Experience: Hidden in Plain Sight

The underdiagnosis issue is particularly acute for girls and women. A recent review in New Scientist explains how decades of male-biased autism research has created a skewed understanding of what autism looks like. While studies of primarily male subjects showed reduced activity in social brain networks—fitting the stereotype of the socially withdrawn autistic person—newer research reveals something surprising: many autistic girls actually show higher activity in social reward areas of the brain than both autistic boys and neurotypical girls.

This helps explain why so many young women come to my office convinced they're autistic despite not fitting the classic profile. They experience intense social anxiety and sensory sensitivities, but also have strong desires for social connection—a combination that doesn't match traditional diagnostic criteria but causes significant distress.

Many develop sophisticated "masking" or "camouflaging" behaviors, studying social interactions like anthropologists and creating scripts to navigate conversations. While these strategies may temporarily help them appear "normal," they come at a tremendous cost: chronic anxiety, exhaustion, depression, and sometimes suicidal thoughts.

Bridging the Gap: When Is It Autism and When Is It Something Else?

This creates an important question: How do we distinguish between females who are genuinely autistic but missed by traditional diagnostics versus those who experience similar challenges but don't have autism?

The answer isn't simple. Some young women I see clearly meet autism criteria when assessed with female-specific considerations in mind. Their social differences, sensory experiences, and developmental histories align with what we now understand about female autism presentation. For them, an autism diagnosis provides crucial validation and access to appropriate support.

However, others show a different pattern. While they experience real sensory sensitivities and social challenges, their developmental history, cognitive patterns, and underlying motivations differ in important ways from autism. Their struggles aren't any less real or significant—they simply reflect a different neurological organization that our current diagnostic categories don't adequately capture.

Neither group's experiences should be dismissed or minimized. Both deserve recognition, understanding, and support tailored to their unique needs.

The PRISM Framework: A Different Way of Understanding

Then there was Jessica. She came to me after comprehensive neuropsychological testing had diagnosed her with a learning disability. Despite clear evidence and documentation that would have provided her with valuable school accommodations, she flatly rejected the diagnosis.

"I'm not learning disabled, I'm autistic," she insisted during one of our meetings.

Her rigid rejection of the learning disability diagnosis was so extreme that she refused to allow the neuropsychological testing results to be shared with her school—effectively cutting herself off from support services she genuinely needed. The autism label felt more complete, more validating to her self-perception. Something was indeed being missed.

After working with dozens of similar cases, I've been contemplating a conceptual framework that might better capture what I'm seeing. While the term "PRISM" has already been adopted in various autism support contexts—from UCLA's research to clinical centers to academic analyses—I'm applying it differently to describe this unique population.

I've further developed PRISM: Perceptive, Relating differently, Inhibited, Seeking Meaning, Misunderstood as a framework for understanding these individuals:

• Perceptive: They notice details, patterns, and sensory information that others miss, processing the world with heightened awareness

• Relating differently: Their social style isn't "wrong"—it's simply different from neurotypical norms, with its own strengths and challenges

• Inhibited: Many experience anxiety, hesitation, or a sense of being "held back" in social situations and daily functioning

• Seeking Meaning: They have a deep drive to understand themselves, often searching for frameworks that explain why they feel different

• Misunderstood: Perhaps most painfully, they consistently feel that others don't "get" them or misattribute negative intentions to their behaviors

The prism metaphor is particularly apt. Just as a prism transforms ordinary white light into a spectrum of colors, these young people process everyday sensory information and social interactions with heightened intensity. They don't filter input the way most do—they experience the full spectrum of sensations, emotions, and details others might miss, which can be both a gift (greater perception) and a challenge (overwhelming when too intense).

Research by Lei and Russell (2021) supports this concept, showing shared constructs of social communication difficulties and fear of negative evaluation in both neurotypical and autistic young people with high social anxiety.

The PRISM profile typically includes:

• Social communication challenges that don't meet full autism criteria

• Sensory sensitivities to sounds, textures, or tastes

• Anxiety that fuels rigid thinking and behavior

• Difficulty with transitions and unexpected changes

• Executive functioning struggles

• A deep desire for social connection, despite challenges

• Focusing problems stemming from rumination, hyperfocusing on details, and sensory overwhelm—which is why traditional ADHD medications can sometimes worsen rather than improve symptoms

This isn't "autism lite" but rather a qualitatively different neurological organization deserving its own recognition and tailored support approaches. It's important to note that this isn't a formal diagnosis I use with patients but a proposed framework to better understand this population that doesn't fit neatly into our current diagnostic categories.

Why Labels Matter (But Sometimes Mislead)

During a particularly moving session last month, I watched Mia break down in tears after I gently explained why she didn't meet autism criteria.

"But if I'm not autistic, then what am I?" she sobbed. "Why do I feel this way?"

My heart ached for her. In that moment, I realized how powerful diagnostic labels have become for this generation—they're not just medical terms but identity markers.

I leaned forward and said, "You're someone with a uniquely wired brain who experiences the world more intensely than most. That difference doesn't need an autism diagnosis to be valid."

The relief on her face was immediate. She needed validation more than a specific label.

The Truth About Rising Autism Rates

The CDC reports that autism rates have skyrocketed—from one in 150 eight-year-olds in 2000 to one in 31 today. But what's driving this increase? A recent Scientific American article explains why this isn't actually an "epidemic" as some public figures have claimed.

Several key factors contribute to rising autism diagnoses:

• Diagnostic evolution: The definition of autism has changed dramatically over time. Before 1980, autism was labeled as "schizophrenic reaction, childhood type" in diagnostic manuals. Through successive revisions, diagnostic criteria have broadened substantially, with the 2013 DSM-5 creating a much wider "autism spectrum disorder" that absorbed previously separate diagnoses like Asperger's. Research shows that 60% of the increase in autism diagnoses in one major study could be attributed to these changes in diagnostic criteria and reporting practices.

• Diagnostic substitution: A study of special education enrollments found that between 2000 and 2010, the number of children labeled as having "intellectual disability" declined by nearly 180,000 while autism diagnoses increased by over 325,000. This shifting of children from one category to another explained two-thirds of the autism increase.

• Improved screening and reduced stigma: As awareness increases and stigma decreases, more parents seek evaluations for their children. States with aggressive early screening programs, like California, show dramatically higher autism rates (53.1 per 1,000 children) compared to states with less robust screening, like Texas (9.7 per 1,000).

• Parental age and medical advances: People are having children later in life, and older parents have a higher likelihood of having autistic children. Additionally, improved neonatal care means more premature babies—who have a higher risk of autism—survive to be diagnosed.

There are genuine environmental risk factors that researchers have identified, including maternal infections with fever during the second trimester and exposure to fine particulate pollution during the third trimester and first year of life.

Let me be absolutely clear about what does NOT cause autism: vaccines. The hypothesis that the measles, mumps, and rubella (MMR) vaccine is associated with autism has been extensively studied and thoroughly refuted by multiple high-quality studies:

• A comprehensive Danish cohort study of 657,461 children found no increased risk of autism associated with MMR vaccination

• A meta-analysis of studies including over 1.2 million children concluded that vaccinations are not associated with autism

• The Cochrane Database of Systematic Reviews found no evidence of an association between MMR immunization and autism spectrum disorders

• A JAMA study examining children with older siblings with and without autism found no increased risk associated with MMR vaccination

• The New England Journal of Medicine has reviewed measles-containing vaccines' safety profile, noting that serious adverse events are rare and much less common than risks from natural measles infection

There is, however, another factor rarely discussed: overdiagnosis. One alarming study found nearly half of community-diagnosed autism cases didn't meet criteria when evaluated by experts.

Social media accelerates this problem. A parent who sees autism content online becomes more likely to question their child's physician, seeking second opinions until they get the diagnosis they expect.

The Psychological Impact of Self-Diagnosis

When Alexa came to me, she'd been "autistic" for three years—at least according to her TikTok followers. She'd built an entire online identity around this self-diagnosis. When formal assessment indicated she instead had anxiety with sensory processing differences, she spiraled.

"Who am I if I'm not autistic?" she asked, devastated. "My followers...my friends...they know me as autistic."

This highlights some important considerations about self-diagnosis:

• Identity Integration: When a diagnosis becomes central to your self-concept, reassessment can trigger profound questions about identity

• Finding Balance: Self-exploration is valuable, but remaining open to professional perspectives allows for more comprehensive understanding

• Community Connection: Finding people who share your experiences is healing, whether or not you share the same formal diagnosis

Self-diagnosis often represents an important first step in a person's journey toward understanding themselves. It reflects genuine self-awareness and recognition that one's experiences differ from the typical. While professional assessment can provide additional insight and clarity, it should build upon rather than invalidate this self-knowledge.

Honoring Differences Without Misdiagnosis

As I write in my clinical notes after these sessions, I often feel like that absent author from Pirandello's play. These young women arrive with unfinished stories, seeking someone to validate their self-written narratives. They want me to stamp "autism" on their character description and make it official.

But I've learned that the kindest response isn't always the one they want to hear. True compassion means helping these young people understand their genuine differences without incorrect labels. It means creating treatment plans that address their actual challenges—anxiety, sensory issues, social communication—rather than forcing them into an autism framework that doesn't fit.

Moving Forward: Creating Stories That Heal

What these young people need most isn't just a diagnostic label but something more fundamental: connection and narrative.

A diagnosis alone is just a collection of symptoms on a checklist. What transforms those clinical terms into something meaningful is the story we build around them—a personal narrative that explains, validates, and guides. In my years of practice, I've watched the power of collaborative storytelling fade from clinical work, replaced by an overreliance on diagnostic manuals and terminology. While diagnoses serve important purposes for treatment planning and insurance, they're hollow without a narrative that connects them to the person's lived experience.

When I sit with patients like Emma or Jessica, we're not just discussing symptoms—we're co-creating a story that makes sense of their past challenges while opening possibilities for their future. This narrative-building is perhaps the most healing aspect of therapy, yet it's increasingly rare in our label-focused healthcare system.

"Think of your life as a book," I often tell my patients. "Your past chapters help explain how you got here, but they don't dictate what you'll write next. You're holding the pen now."

For these young women seeking autism diagnoses, their search isn't really about a label—it's about finding a story that explains their differences and validates their struggles. Whether that story includes autism or something like the PRISM framework I've described, what matters most is that it resonates with their experience and provides a path forward.

For clinicians working with these young people, I encourage becoming compassionate co-authors. When someone has built their identity around being autistic, challenging that self-diagnosis requires tremendous sensitivity and the ability to offer an alternative narrative that's equally validating. Remember: they're not attention-seeking; they're explanation-seeking.

And for young people wondering about themselves: Your experiences are valid, whether or not they fit neatly into existing diagnostic categories. Finding community is wonderful, but working with a professional who can help you craft your unique story provides the clearest path to self-understanding and growth.

In the end, perhaps we're all characters in search of our own stories—like those six characters from Pirandello's play who interrupted a theater rehearsal, desperate for an author to complete their narratives. The difference is that with proper support, we can become the authors of our own lives, writing futures not limited by labels that don't truly fit.

*All patient examples described in this article are composites based on multiple individuals with identifying details altered to protect privacy while preserving the essence of their experiences.