Self-diagnosis for neurodivergence: how reliable is it?

As more people seek to better understand their unique cognitive traits, self-diagnosis for conditions like autism and ADHD is becoming increasingly common. Facing often-debilitating symptoms, many turn to online resources, forums, and communities to explore their behaviors and feelings. Self-diagnosis can provide a sense of validation, yet it also raises important questions about its benefits and risks. This article examines the motivations and implications of self-diagnosis, highlighting both its advantages and limitations. 

Self-Diagnosing Autism and ADHD

Neurodivergences like autism and ADHD are complex and manifest in various ways, making them challenging for the general public to recognize. In this context, self-diagnosis can be a means for individuals to understand their own experiences, especially when access to formal care is hindered by long wait times, high costs, or complex clinical pathways. Faced with these obstacles, self-diagnosis can feel like a way to find answers where the healthcare system may not provide them immediately.

Self-diagnosis addresses several fundamental needs for individuals questioning their neurodivergence:

• Self-Understanding: Self-diagnosis allows people to put words to experiences or behaviors that have often been misunderstood, sometimes since childhood. This process offers a framework for interpreting difficulties, quirks, or differences in how they think and feel.

• Personal Validation: Self-diagnosis can bring relief by validating experiences and behaviors that may previously have felt isolating or "abnormal." By identifying with specific traits of autism or ADHD, individuals find explanations for their struggles, reducing self-stigma and increasing self-esteem.

• Access to Community Support: By recognizing shared traits, self-diagnosis enables individuals to connect with online communities of others with similar journeys and perspectives. This connection can alleviate feelings of isolation and offer support, advice, and greater self-acceptance.

• Preparation for Clinical Diagnosis: For those considering a formal diagnosis, self-diagnosis often serves as a preliminary step. By identifying and documenting their observations, individuals feel better prepared to consult a professional, structuring their expectations and posing more specific questions.

• Relief from Diagnostic Uncertainty: For some, the healthcare process can be lengthy, costly, or poorly adapted, especially for atypical presentations, such as autism in women or adult ADHD. Self-diagnosis can act as a stopgap for those lacking immediate access to answers, providing clarity in the absence of a formal diagnosis.

The specific characteristics of autism and ADHD also drive many toward self-diagnosis due to the difficulty of obtaining clear answers within the healthcare system. Some forms of autism, particularly among women, manifest in more subtle ways that differ from traditional stereotypes, complicating recognition. Similarly, ADHD symptoms in adults can easily be mistaken for other conditions, such as chronic stress. In such cases, self-diagnosis often serves as an initial step toward a better understanding of oneself.

Self-Diagnostic Tools

As self-diagnosis grows more popular, a variety of online tools have emerged to aid in identifying autism and ADHD traits. While these tools can raise awareness and prompt reflection, they also carry risks, particularly in terms of false positives and misunderstandings without clinical guidance.

Atypikoo's Neurodivergence Test
The Atypikoo neurodivergent test helps users identify potential neurodivergent traits. Though it is not a formal diagnosis, it offers a preliminary evaluation for those who identify with neuroatypical characteristics. This type of tool provides individuals with more confidence in consulting a professional to confirm or further explore these results.

World Health Organization Adult ADHD Self-Report Scale (ASRS)
Widely used for ADHD, the ASRS demonstrates good reliability and high correlation with clinical diagnoses, especially for adolescents and adults. However, studies indicate that self-assessment scores can lack accuracy and lead to misdiagnosis without professional validation, particularly when symptoms overlap with other conditions (Kessler et al., 2007).

Autism-Spectrum Quotient (AQ)
Designed for adults, the Autism-Spectrum Quotient (AQ) is often used to screen for autism traits. While it is sensitive, its low specificity means it risks false positives, especially for individuals with anxiety or other comorbid conditions (Ashwood et al., 2016).

Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R)
The RAADS-R is a self-assessment questionnaire for adults who suspect autism traits. While reliable in raising awareness and detecting autism traits in undiagnosed individuals, it can yield false positives, particularly for those with co-occurring mental health conditions such as anxiety or depression. Experts advise a cautious interpretation and recommend clinical validation.

Autism Detection in Early Childhood (ADEC)
Designed for young children, the ADEC is reliable when used with clinical support. It is recommended to use it alongside professional guidance to avoid misdiagnosis, particularly in young children where symptoms can be more challenging to interpret (Nah et al., 2014).

The Role of Social Media in Self-Diagnosis

Social media, particularly platforms like TikTok, plays a significant role in spreading awareness of neurodivergence concepts. Through short, impactful videos, creators share personal experiences with conditions like autism and ADHD, making it easy for a broad audience to relate to specific symptoms and behaviors. These accessible and often visual testimonials raise awareness of these conditions, prompting many people to consider self-diagnosis.

For many, these platforms introduce neurodivergent concepts. By discovering creators who openly discuss their symptoms, individuals may recognize similarities in their own experiences, sparking curiosity and encouraging them to explore further, either online or by consulting healthcare professionals.

However, TikTok content also poses risks, particularly through oversimplification and the tendency to generalize. TikTok’s short format can prevent nuanced explanations, leading some users to interpret common behaviors such as anxiety, fatigue, or distractibility as signs of ADHD or autism without clinical validation. This simplification can promote incorrect self-diagnoses and an excessive identification with unconfirmed disorders. Research also shows that social networks can reinforce incorrect perceptions through social similarity effects, where individuals recognize themselves in others’ experiences without considering diagnostic subtleties (Davidsson et al., 2017).

Limitations of Self-Diagnosis

While self-diagnosis can be a helpful first step, it presents certain risks:

• Risk of Errors and Overdiagnosis: Self-diagnosis can lead to errors, as many autism and ADHD symptoms overlap with other conditions. For example, ADOS-2, a standard diagnostic tool for autism, shows a high rate of false positives in complex psychiatric settings (Maddox et al., 2017).

• Impact on Mental Health: An incorrect self-diagnosis can worsen anxiety or lead to self-stigmatization. Individuals may also develop an excessive identification with a disorder they do not have, impacting their mental health and self-perception.

Professionals often stress that self-diagnosis cannot replace a clinical evaluation, but they acknowledge the need for self-understanding that drives many people to seek it. However, a lack of training among professionals in recognizing neurodevelopmental nuances, such as autism in women or adult ADHD, can further complicate diagnosis. Studies indicate that many practitioners believe a lack of resources contributes to both overdiagnosis and incorrect diagnoses (Davidovitch et al., 2021).

This highlights the need for ongoing professional training on the specificities of autism and ADHD, particularly in atypical cases. This would help practitioners better discern symptoms, reduce reliance on self-diagnosis, and ensure appropriate care from the first consultation.

Conclusion

Self-diagnosis reveals a deep need for understanding and personal validation, and it can serve as a valuable starting point. However, it has limitations and risks, especially regarding overdiagnosis and errors that may impact mental health. Ultimately, only a clinical diagnosis provides reliable answers and suitable support, underscoring the importance of professional guidance to address the limitations of self-diagnosis.