Is self-assessment enough?

Historically, autism has been underdiagnosed, especially in women, nonbinary individuals, and people of colour.^[1]Autism diagnosis among US children and adults, 2011–2022 (Grovsner et al., 2024) This post explores the increasing identification of autism in adults, the role of self-assessment, and the challenges that come with self-diagnosis.

The increasing identification of autism in adults

The rise in autism diagnoses among adults, particularly those who are not young white males, is not due to an “epidemic of autism.” Rather, it is the result of improved recognition and growing awareness. Diagnosing autism is complex and requires extensive training in observation, testing, and interviewing. As clinicians refine their ability to identify autistic traits, more cases are being diagnosed, especially among people of colour.^[2]What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis (Loomes et al., 2017)

Historically, the medical system has focused on diagnosing young white boys, often overlooking autistic girls, women, and individuals from diverse backgrounds who present differently. Biases in the medical community have led to widespread misdiagnoses and underdiagnoses. The current male-to-female autism diagnosis ratio, reported as 4:1 by the CDC, has been called into question, with experts suggesting that many autistic females remain undiagnosed.^[3]Gender differences in self-reported camouflaging in autistic and non-autistic adults (Hull et al., 2020) One study even found that 80% of autistic women remain undiagnosed at age 18; and that the true male-to-female ratio may actually be 3:4^[4]Finding the True Number of Females with Autistic Spectrum Disorder by Estimating the Biases in Initial Recognition and Clinical Diagnosis (McCrossin, 2022)—so more autistic females than males.

The role of self-assessment in autism identification

Self-assessment is a valuable tool for many reasons. It allows individuals to reflect on their experiences, identify patterns in their behaviours, and gain insight into their neurodivergent traits. Five themes emerged when exploring the experience of realizing a self-diagnosis: feeling “othered,” managing self-doubt, a sense of belonging, understanding oneself, and questioning the need for a formal diagnosis.^[5]Exploring the experience of self-diagnosis of autism spectrum disorder in adults (Lewis, 2016)

Feeling “othered” refers to the persistent sense of being different from peers throughout life, which can lead to social isolation and a lack of understanding from others. Many individuals who self-identify as autistic report experiencing a lifetime of misalignment with societal expectations, often feeling out of place in social interactions. Managing self-doubt is another significant challenge, as self-diagnosed individuals frequently struggle with imposter syndrome. They may question whether they are “autistic enough” or whether their experiences truly align with diagnostic criteria, particularly in the absence of external validation.

Beyond personal self-reflection, external factors also play a role in the self-identification process. Many autistic adults report facing significant barriers when seeking professional assessment, including high financial costs, long wait times, and a lack of knowledgeable clinicians.^[6]Understanding the self-identification of autism in adults: a scoping review (Overton et al., 2023) Some also experience frustration with the medical model of autism, which may not align with their lived experiences. Adults who self-identify as autistic often do so after extensive research, personal reflection, and interactions with the autism community. Exposure to social media content, personal relationships with diagnosed autistic individuals, and taking online self-assessment tests frequently act as catalysts for self-recognition. Many describe their self-identification as a validating and liberating experience that helps them make sense of lifelong struggles.

Accuracy of self-diagnosis

While concerns about misdiagnosis are valid, emerging research supports the accuracy of self-diagnosis, particularly within autism. Recent philosophical and psychiatric discussions argue that autistic individuals may have privileged access to their own cognitive and sensory experiences, granting them a unique ability to recognize and assess their autistic traits more accurately than non-autistic clinicians or external evaluators.

A recent study by Fellows examines the epistemic foundations of self-diagnosis in psychiatry, emphasizing that individuals possess direct access to their internal states in a way that professionals cannot.^[7]Establishing the accuracy of self-diagnosis in psychiatry (Fellows, 2024) This argument aligns with the notion that autism, being largely defined by subjective cognitive and sensory differences, is best understood by those who experience it firsthand. The study critiques traditional diagnostic models that rely solely on external observations, highlighting that autistic individuals often develop a deep self-awareness of their neurotype, informed by lived experience rather than solely by clinical criteria.

Additionally, the study explores how self-diagnosis differs across psychiatric conditions, arguing that while some diagnoses rely heavily on clinical interpretation, autism is uniquely suited for self-identification due to its intrinsic, lifelong nature. The findings suggest that autistic individuals, through extensive reflection and comparison with both neurotypical and neurodivergent experiences, are often well-equipped to recognize their own autistic traits. Therefore, dismissing self-diagnosis as unreliable overlooks the epistemic authority that autistic individuals have regarding their own neurology.

This perspective challenges the assumption that professional assessment is always superior to self-assessment. Instead, it suggests that self-diagnosed autistic individuals may arrive at an accurate understanding of their neurotype through introspection, community discourse, and comparison with established diagnostic frameworks. Given the barriers to formal diagnosis—including systemic biases, financial costs, and clinician misunderstanding—self-identification serves as a legitimate and valuable means of recognizing and validating one’s autistic identity.

However, self-identification can also bring challenges. Some individuals experience imposter syndrome, doubting whether they are “autistic enough” without formal validation. Additionally, skepticism from friends, family, or healthcare professionals can lead to distress and self-doubt. A strong sense of belonging is crucial in this process. Many self-identified autistic individuals find support in online autism communities, which often serve as safe spaces for discussing sensory sensitivities, social difficulties, and neurodivergent traits without judgment.

The debate on self-diagnosis

The increasing recognition of self-diagnosis in autism has sparked significant debate within both the medical community and the autistic community. While many self-identified autistics find empowerment and validation in self-assessment, others raise concerns about the potential for misdiagnosis, misinformation, and the limitations of self-identification without professional evaluation.

Self-diagnosis is often a necessary step due to the significant barriers to obtaining a formal autism diagnosis. Many adults who suspect they are autistic face financial constraints, long waitlists, a shortage of knowledgeable clinicians, and concerns about stigma or discrimination. Some individuals may also avoid seeking a formal diagnosis due to fears that it could negatively impact employment, healthcare, or relationships. As a result, self-identification can be a deeply meaningful process that allows individuals to better understand themselves, find community support, and implement accommodations that improve their quality of life.

However, not all experts agree that self-identification is sufficient for understanding one’s neurodivergence. While self-assessment tools and community discussions can be valuable, autism is a complex neurodevelopmental condition that overlaps with various other mental health conditions. This brings up a key counterargument—the potential for misdiagnosis.

Recent research has highlighted the mental health impact of late autism diagnoses, including post-diagnosis grief, imposter syndrome, and difficulties in restructuring self-identity.^[8]De novo network analysis reveals autism causal genes and developmental links to co-ocurring traits (Miller et al., 2023) Many late-diagnosed adults report struggling with the emotional aftermath of recognizing their neurodivergence. Some experience grief over lost years, realizing they were unknowingly masking their autistic traits and struggling without necessary support. Others describe feeling anger at systemic failures, while some feel relief at finally understanding their experiences. This period of emotional adjustment often leads to a reevaluation of identity, relationships, and career paths.

Potential for more counterarguments

While self-identification is a meaningful and valid process for many autistic individuals, it is not without its complexities and challenges. One of the primary concerns raised by clinicians and researchers is the potential for misdiagnosis. Many conditions share overlapping traits with autism, making self-assessment a difficult and sometimes uncertain process. Without a professional evaluation, individuals may misinterpret their symptoms, leading to misunderstandings about their neurodevelopmental profile and, in some cases, an inaccurate self-diagnosis.

Overlapping conditions & misdiagnosis

ADHD & autism

Attention-Deficit/Hyperactivity Disorder (ADHD) and autism frequently co-occur, yet they also have distinct differences. Both conditions involve executive functioning challenges, sensory sensitivities, and social difficulties. However, ADHD is primarily characterized by impulsivity, hyperactivity, and difficulty with sustained attention, whereas autism is defined by differences in social communication, repetitive behaviors, and cognitive rigidity.^[9]Autism spectrum disorders and ADHD: overlapping phenomenology, diagnostic issues, and treatment considerations (Antshel & Russo, 2019) Misdiagnosis between these conditions is common, as individuals with ADHD may struggle with social interactions due to impulsivity and difficulty following conversations, which can sometimes be mistaken for autistic social differences.

Furthermore, research indicates that some individuals who self-identify as autistic may actually have ADHD or a combination of both conditions, necessitating careful evaluation by professionals.^[10]Adult attention-deficit hyperactivity disorder: key conceptual issues (Asherson et al., 2016) A study by Joshi et al. highlights that the overlapping symptoms of ADHD and autism often lead to diagnostic delays and inaccuracies, particularly in those who seek self-diagnosis.^[11]Symptom profile of ADHD in youth with high-functioning autism spectrum disorder: a comparative study in psychiatrically referred populations (Joshi et. al., 2017)

Trauma & autism

Trauma, particularly complex PTSD (C-PTSD), can mimic autistic traits, such as difficulties with emotional regulation, sensory sensitivities, and social withdrawal ^[12]Traumatic childhood events and autism spectrum disorder (Kerns et al., 2015). Some individuals with prolonged trauma histories report experiences of dissociation and emotional numbness, which can resemble autistic traits such as flat affect and difficulties with emotional reciprocity ^[13]Trauma and autism spectrum disorder: review, proposed treatment adaptations and future directions (Peterson et al., 2019).

A study by Reuben et al. ^[14]Interpersonal trauma and posttraumatic stress in autistic adults (Reuben et al. 2021) suggests that trauma-exposed individuals might identify with autism due to struggles with interpersonal relationships and feeling different from others, but these difficulties may stem from trauma responses rather than innate neurodevelopmental differences. Distinguishing between autism and trauma-related dissociation is crucial, as the treatment approaches for these conditions differ significantly.

Personality disorders & autism

Certain personality disorders, such as Avoidant Personality Disorder (AvPD) and Schizoid Personality Disorder (SPD), share key similarities with autism, particularly in the areas of social withdrawal, discomfort with interpersonal relationships, and emotional regulation difficulties. However, autism is a neurodevelopmental condition present from birth, whereas personality disorders typically develop in response to environmental factors and life experiences ^[15]Identifying the lost generation of adults with autism spectrum conditions (Lai & Baron-Cohen, 2015).

A study by Dudas et al. ^[16]The overlap between autistic spectrum conditions and borderline personality disorder (Dudas et. al., 2017) found that individuals with AvPD often exhibit high levels of social anxiety and avoidance behaviours that may be confused with autistic social difficulties. Additionally, those with SPD may show emotional detachment and a preference for solitary activities, which can resemble autistic traits but stem from a different underlying mechanism ^[17]On the continuity between autistic and schizoid personality disorder trait burden: a prospective study in adolescence (Cook et al., 2020). Without a comprehensive clinical assessment, differentiating between these conditions can be challenging.

Social anxiety vs. autism

Some individuals who struggle with social interactions and sensory sensitivities may assume they are autistic, when in reality, they may have severe social anxiety. Social anxiety disorder (SAD) involves an intense fear of judgment and embarrassment, leading to avoidance of social situations. In contrast, autistic social difficulties stem from differences in processing social cues and engaging in neurotypical communication norms (Spain et al., 2018).

Research by Halls et al. (2020) found that individuals with SAD often experience heightened self-consciousness and excessive worry about social performance, whereas autistic individuals are more likely to struggle with intuitive social cognition. Misinterpreting social anxiety as autism could lead to an inaccurate understanding of one’s needs and challenges, potentially delaying access to appropriate interventions.

The role of professional diagnosis

Given these overlapping conditions, a professional diagnosis can provide clarity by differentiating between autism and other conditions with similar traits. While self-assessment is a valuable tool, a thorough clinical evaluation considers developmental history, behavioural patterns, and standardized diagnostic measures to ensure an accurate diagnosis. Despite the challenges associated with obtaining a diagnosis, a formal assessment remains an important tool for those seeking clarity and access to accommodations. Clinicians trained in autism evaluations can differentiate between autism and overlapping conditions such as ADHD, personality disorders, and trauma-related responses, leading to a more precise understanding of individual needs.

The importance of informed self-assessment

Despite the potential for misdiagnosis, self-identification remains an essential part of many autistic individuals’ journeys. Engaging with autism literature, community discussions, and self-assessment tools developed by autistic researchers can help individuals navigate their experiences with greater accuracy. While self-diagnosis should not be dismissed outright, it is beneficial to approach it with careful consideration, openness to multiple possibilities, and an understanding of overlapping conditions.

While these overlapping conditions highlight the potential complexities of self-identification, many autistic individuals still find self-diagnosis a crucial step toward understanding themselves. Engaging with autism-informed literature, professional evaluations when accessible, and neurodivergent communities can help ensure that self-identification leads to the most accurate and supportive understanding of one’s neurotype.

Key findings on self-assessment in autism

Barriers to a formal diagnosis

Many self-identified autistic adults report significant obstacles when attempting to obtain a professional diagnosis. These barriers include high financial costs, long wait times, lack of access to knowledgeable clinicians, and concerns about stigma or discrimination. Some individuals also express frustration over the medical model of autism, which may not always align with their lived experiences.^[18]Understanding the self-identification of autism in adults: a scoping review (Overton et al., 2024)

Motivations for self-identification

Adults who self-identify as autistic often do so after extensive research, personal reflection, and interactions with the autism community. Common pathways to self-identification include:^[19]Understanding the self-identification of autism in adults: a scoping review (Overton et al., 2024)

• Exposure to social media content
• Personal relationships with diagnosed autistic individuals
• Taking online self-assessment tests

Many describe their self-identification as a validating and liberating experience that helps them make sense of lifelong struggles.

Psychological & social impact

Self-identification can be both empowering and challenging. Many self-identified autistics feel a sense of relief upon discovering that their experiences align with autism, allowing them to reframe past difficulties in a new light. However, others experience imposter syndrome, doubting whether they are “autistic enough” without formal validation. Additionally, some face skepticism from friends, family, or healthcare professionals, leading to further distress.^[20]Understanding the self-identification of autism in adults: a scoping review (Overton et al., 2024)

Community & support systems

A strong sense of belonging is a crucial factor in the self-identification process. Many self-identified autistic individuals find validation and support in online autism communities, where they can connect with others who share similar experiences. These communities often serve as safe spaces for discussing sensory sensitivities, social difficulties, and neurodivergent traits without judgment.^[21]Understanding the self-identification of autism in adults: a scoping review (Overton et al., 2024)

The debate on self-diagnosis

While some researchers and clinicians acknowledge self-identification as a legitimate and meaningful process, others express concerns about its accuracy and potential for misidentification. The review highlights the need for greater recognition of self-identified autistics and calls for more accessible diagnostic pathways to bridge the gap between self-assessment and formal diagnosis.^[22]Understanding the self-identification of autism in adults: a scoping review (Overton et al., 2024)

Conclusion

Receiving an autism diagnosis is not an endpoint but the beginning of a transformative journey. It opens doors to self-understanding, validation, and meaningful community connections. For me, my diagnosis provided clarity on lifelong challenges, helped me recognize that my struggles were not personal failures, and allowed me to find a community where I truly belong. Learning about autism has empowered me to better advocate for my needs and embrace my neurodivergent strengths. However, the journey has not been without difficulty—I have faced self-doubt, frustration over years of being misunderstood, and challenges in navigating a world that often does not accommodate neurodivergent individuals.

Whether formally diagnosed or self-identified, autistic individuals deserve access to support, accommodations, and a society that values neurodivergent ways of thinking and being. Although self-assessment provides valuable insight, it is not without its limitations. The lack of formal recognition can impact access to accommodations, medical care, and social support, making it a deeply personal and complex decision for many individuals. Research continues to highlight the need for increased accessibility to formal diagnostic services and greater societal acceptance of self-identification as a meaningful step in understanding autism.

By advocating for better diagnostic processes, challenging misconceptions, and embracing the diverse ways autism manifests, we can work toward a world where all autistic individuals are recognized, respected, and supported.