ADHD and the Self-Diagnosis Validity
Table of Contents:
Overview
Incomplete Diagnostic Criteria
Financial Barriers
Self Diagnosis Validity
Accessible Diagnostic Assessments
Author’s Note
Helpful Resources to Support Your Sense of Self and Community
Overview
October is ADHD Awareness Month. In honor of this, I want to dive into a topic that can be viewed as a controversial one: self-diagnosis. The purpose of this blog post is NOT to discount medical diagnosis, but rather to help ease the sense of imposter syndrome and foster a sense of “normalization” in self-identification when necessary/appropriate. With more accessible and inclusive first-hand experiences being shared, self-diagnosing seems to be on the rise. Though I don’t think one should self-diagnose solely based on a few reels, I do believe there are many obstacles in receiving an accurate diagnosis for a majority of folks; therefore, reflective self-discovery is not only acceptable, but can be necessary for some seeking answers. When I’m asked why self diagnosing is valid, my short answer explains it is due to the fact that our individual brains are more complex than what is currently listed in the DSM-5’s (The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition) criteria. It does not apply to most of us when understood at a surface level. Luckily, there are more clinicians coming out to delve deeper into how ADHD traits can manifest within different identities. However, most of the time, these clinicians are not through insurance, which brings in the barrier of financial accessibility. For these reasons, folks are doing their own research and self-discovery to diagnose themselves with what feels most authentic to their own experience and identity. Let’s take a look at why so many people, primarily women and/or folks in the BIPOC community, are so often late or misdiagnosed, and why self diagnosis is in fact valid.
Incomplete Diagnostic Criteria
You may know there are three subtypes of ADHD listed in the DSM: Inattentive Type (formerly ADD. Difficulties with regulating attention), Hyperactive and Impulsive Type (hyperactivity and impulsivity), and Combined Type (a combination of hyperactivity/impulsivity, as well as difficulty with attention regulation). However, our understanding of how these subtypes present themselves in different individuals is incomplete. As with most diagnoses in the DSM, when research was initially conducted, the participants in the studies were predominantly, if not entirely, white males. It was not until 1993 that it became a federal law for the NIH (National Institute of Health) to include women and BIPOC participants in these studies (Nerenberg, 2020). It makes sense that white boys are more likely to be diagnosed with ADHD than children of other demographics (Elgaddal and Reuben, 2024) since this is the group that diagnostic criteria was based off of and designed for. In order to more accurately diagnose ADHDers, clinicians must take into account many factors such as race, gender, environment, masking, etc. before determining the diagnosis. When this is not done, that’s when we start to see misdiagnosis. For example, BIPOC children are more likely to be diagnosed with ODD (Oppositional Defiance Disorder) than ADHD for a variety of reasons, though perhaps most concerningly is the presence of implicit racial bias amongst clinicians (Fadus et al., 2020). In our society, girls more often are taught to conform to social expectations and behaviors than boys which results in subconscious masking (Nerenberg, 2020).
Across all demographics, masking can be a major contributing factor for misdiagnosis. Let’s look at a specific example within ADHD Inattentive Type. One of the criteria for this subset is overlooking details and making careless mistakes. Some ADHDers may not check this specific box because of learned masking- they do not show careless mistakes or missed details. That may be, but clinicians need to look deeper to ask what is this individual doing to compensate? This person does not miss details, but perhaps that is because they have learned to compensate by taking much larger amounts of time than non-ADHDers to check things over and over repeatedly to ensure there are no mistakes. They are putting in so much extra energy to complete the same tasks as their non-ADHD peers. During assessment, a clinician who may ask follow up questions regarding compensation/coping skills, relationships, energy level, and other important factors in a person’s behavior may have a clearer picture of how ADHD may or may not be manifesting in that individual. However, these types of clinicians (typically neurodiversity-affirming) are not always as easy to come by, leaving suspecting ADHDers less likely to seek support, expecting they will be misunderstood.
Financial Barriers
Fortunately, there are in fact clinicians who assess ADHD with this neurodiversity-affirming lens that takes in a person’s intersectionality into account when diagnosing. However, in order to not be limited in their work, this often means they are out of network with insurance companies, resulting in higher prices. This can feel like another obstacle for suspecting ADHDers who can not afford out of pocket assessment rates, let alone continued services. Financial accessibility in quality inclusive healthcare is another reason folks often opt for self-diagnosis.
Self Diagnosis Validity
What is the purpose of diagnosis? The answer to this is different from person to person; as it should be. The vast majority of the neurodiverse community views diagnosis as a part of their identity. Some see it as an unnecessary label, separate from their identity. Some want a diagnosis in order to access helpful medications and/or accommodations in school or work. Some seek diagnosis simply as an answer to better understand themselves. Everyone has their own reason for wanting or not wanting a diagnosis. Due to the obstacles in our healthcare system and society, this often means finding the answer on your own. And that is okay. This world was not built for many of us, and it is difficult to find answers in the same ways as others. If you sense there is something different about the way you experience the world than the way the world tells you to experience it, you deserve to find the answer to the identity and community in which you feel most authentic.
There are so many misconceptions about traits associated with ADHD that diagnosis can help reframe. An ADHDer who’s pile of laundry now lives on their desk chair is not lazy, but rather they are likely experiencing ADHD paralysis due to environmental/information overwhelm. An ADHDer who appears bored and inattentive in a lecture is not rude, but rather they operate from an interest-based nervous system. An ADHDer who seems overly sensitive or anxious is not “too much,” but rather may experience RSD (Rejection Sensitive Dysphoria). Having a diagnosis can help give us some answers and support shifts away from shame. Understanding our experience as “this is how my brain works,” instead of viewing it as “character flaws,” can have a massive impact on our self-image and overall mental health.
Accessible Diagnostic Assessments
Yes, there are obstacles to diagnosis, and self diagnosis is valid, BUT if an official diagnosis is important to you, there may still be options! Some neurodiversity-affirming therapists who understand the importance of looking deeper at the whole person throughout assessment offer other financial accessibility options. Some have sliding scales, provide superbills to submit for reimbursement, or use Equitable Pricing Models (three rate options offered: Accessible- less than cost for those with less access to financial resources, Sustainable- the “normal” rate of services, and Equitable- slightly more than sustainable rate to redistribute wealth make accessible rate available). Check out the resources below to find more information on diagnosis accessibility and support.
Author’s Note
Though I am fully in support of self identifying, I do encourage folks to seek additional information/support when possible. Social media is helpful in serving its purpose of being a platform for sharing and relating to firsthand lived experience, but this should be used in conjunction with other resources. Social media can be helpful AND it may not always be accurate for everyone. OR it is, but can be interpreted in different ways. So many neurological experiences can have shared traits, meaning there may be other potential answers to your experiences such as anxiety, autism, bipolar, OCD, and more. Use the resources below as a starting point as you conduct your own self research. If you’d like more resources/support, feel free to reach out to me at mikaila@melodymt.com!
Helpful Resources to Support Your Sense of Self and Community
Neurodivergent Insights Website with helpful infographics, blog/articles, community building, trainings and so much more!
Divergent Conversations A podcast with two neurodivergent therapists discussing and reflecting on their own lived experiences, as well as how it impacts their clinical work. ADHD comes up often (as both hosts are AuDHDers), and they even have a 7 episode mini series dedicated to topic of ADHD, as well as an episode on self diagnosing (Episode 17)
Divergent Mind: Thriving in a World That Wasn’t Meant For You A book about neurodivergent women’s experiences and why they are so often left out of/dismissed in medical settings
Neurodivergent Therapists This website has a directory of neurodivergent therapists in which you can search by state or country. Check it out to find a diagnosing therapist who understands the many layers of diagnosis and see what financial accessibility options may be available!
Play. Learn. Chat. Resources Page A whole page dedicated to Neurodiversity-Affirming resources!
You are seen, you are valid, and you are valued just as you are.
Mikaila Vieyra, LPMT, MT-BC
References
Fadus, M.C., Ginsburg, K.R., Sobowale, K. et al. Unconscious Bias and the Diagnosis of Disruptive Behavior Disorders and ADHD in African American and Hispanic Youth. Acad Psychiatry 44, 95–102 (2020). https://doi.org/10.1007/s40596-019-01127-6
Nerenberg, J. (2020). DIVERGENT MIND : thriving in a world that wasn’t designed for you. Harperone.
Reuben C, Elgaddal N. Attention-deficit/hyperactivity disorder in children ages 5-17 years: United States, 2020-2022. NCHS Data Brief, no 499. Hyattsville, MD: National Center for Health Statistics. 2024. DOI: https://doi.org/10.15620/cdc/148043.