Self-Diagnosis vs. Formal Diagnosis: Why Both Are Valid and Necessary
Bridgette Hamstead
The debate over self-diagnosis versus formal diagnosis in the neurodivergent community continues to be a source of discussion and, at times, contention. While some people argue that only a formal diagnosis from a medical professional is valid, others recognize that self-diagnosis is a necessary and valuable tool, especially for those who face barriers to accessing healthcare. Both paths to understanding one’s neurodivergence are legitimate and necessary, particularly in a world where systemic obstacles prevent many from receiving an official medical assessment. Rather than dismissing self-diagnosis as invalid, it is crucial to understand the reasons behind it, the legitimacy of self-identification, and the systemic inequities that make self-diagnosis not only valid but essential for many neurodivergent people.
Formal diagnosis can provide individuals with validation, medical recognition, and access to accommodations in school, work, and daily life. For some, receiving a diagnosis from a licensed professional offers a sense of clarity, relief, and an explanation for lifelong struggles. A formal diagnosis can open doors to disability services, workplace accommodations, and legal protections under laws like the Americans with Disabilities Act (ADA). In many cases, an official diagnosis allows individuals to access therapy, medication, occupational support, and other resources that can significantly improve their quality of life. The validation that comes with a diagnosis can also help neurodivergent individuals process past experiences, improve self-understanding, and navigate relationships more effectively.
However, the process of obtaining a formal diagnosis is riddled with systemic barriers that make it inaccessible to many. One of the most significant obstacles is the high financial cost associated with diagnosis. In many countries, diagnostic assessments for autism, ADHD, and other neurodivergent conditions can cost thousands of dollars, often requiring out-of-pocket expenses due to limited insurance coverage. Many individuals, especially those from marginalized communities, simply cannot afford these costs, forcing them to seek alternative means of understanding their neurodivergence.
Another major barrier is the inaccessibility of qualified professionals. Many medical and mental health providers still rely on outdated diagnostic criteria, leading to frequent misdiagnoses or dismissals of individuals who do not fit the stereotypical presentation of a condition. This is particularly true for women, nonbinary people, and people of color, who are significantly underdiagnosed compared to white men. Historically, autism and ADHD research have been based on studies of young, white, cisgender boys, meaning that many people who do not match those narrow criteria struggle to receive an accurate diagnosis. As a result, many neurodivergent adults go undiagnosed well into adulthood, despite having exhibited traits of their condition for their entire lives.
Even when professionals are available, the diagnostic process itself can be emotionally exhausting, invasive, and dismissive. Many neurodivergent individuals report feeling invalidated by doctors who dismiss their concerns or attribute their struggles to anxiety, depression, or laziness. This is especially common for adults seeking an autism diagnosis, as many providers are unfamiliar with how autism presents in adults and rely on childhood-based diagnostic models. Others may face gender bias, with professionals downplaying symptoms in women and nonbinary individuals or insisting that certain traits are merely personality quirks rather than evidence of neurodivergence.
In contrast, self-diagnosis is often the only viable path for individuals who recognize their neurodivergence but cannot access formal assessment. Self-diagnosis is not about casually labeling oneself, but rather a thorough, research-based process in which individuals study medical criteria, read personal accounts, engage with neurodivergent communities, and reflect on their own experiences. Many who self-diagnose spend years researching and questioning before settling on an identification that feels accurate. It is a deeply introspective process that requires critical thinking and an understanding of medical frameworks.
Self-diagnosis can be incredibly empowering, allowing individuals to seek out strategies, coping mechanisms, and community support that improve their quality of life. Understanding oneself as autistic, ADHD, or otherwise neurodivergent can provide a sense of belonging and self-compassion, helping individuals reframe their past experiences and recognize their needs. Many people who self-diagnose experience significant personal growth, finding relief in finally having an explanation for their differences and struggles. For those who have spent their lives feeling out of place or misunderstood, self-diagnosis can be a crucial step toward self-acceptance and mental well-being.
Despite its validity, self-diagnosis is often met with skepticism and dismissal, particularly from medical professionals and neurotypical individuals who argue that only a formal diagnosis is legitimate. However, the reliance on professional gatekeeping ignores the reality that the diagnostic system is deeply flawed and inaccessible for many. Moreover, medical professionals are not infallible; they often misdiagnose or fail to recognize neurodivergence in individuals who do not fit a narrow mold. While formal diagnosis is beneficial for those who can obtain it, it is by no means the only way to validate neurodivergent identity.
Ultimately, self-diagnosis and formal diagnosis are not opposing forces but rather complementary paths that serve different needs. Those who are able to obtain a formal diagnosis may find it beneficial for accessing services and accommodations, while those who self-diagnose may use their understanding to advocate for themselves and find community. Both paths lead to greater self-awareness, personal growth, and the ability to navigate life in a way that honors neurodivergent needs. The real issue is not whether self-diagnosis is valid, but why so many people are forced to rely on it due to systemic failures in the medical and mental health fields.
Rather than gatekeeping neurodivergent identities, the focus should be on making formal diagnosis more accessible, challenging medical biases, and ensuring that all neurodivergent individuals—diagnosed or self-identified—have the resources, support, and validation they need. No one should have to struggle for recognition of their neurodivergence, and the legitimacy of self-diagnosis must be acknowledged as a vital tool for those whom the system continues to exclude. Whether through formal diagnosis or self-identification, every neurodivergent person deserves to understand themselves and access the support they need to thrive.