Why the Labels Matter
- Amelia Loveland
- Oct 2, 2025
- 7 min read
Updated: Dec 20, 2025
The Life Changing Power of Neurodivergent Diagnosis
(The Abridged Version)
We live in a world which is becoming more aware of neurodiversity as normal human variety. However, for millions of autistic, ADHD and other neurodivergent people, obtaining a formal diagnosis is much more than just identifying your medical condition — it will be the doorway to the knowledge, community and help you need.
Beyond Pathology: Reframing Diagnosis in the Neurodiversity Age
The neurodiversity model was developed by autistic sociologist Judy Singer in the 1990s to challenge traditional medical ways of looking at neurological differences (Singer, 1998). It defines neurodivergence as being like ethnic or cultural variation, rather than as something needing to be cured.
Although there is a growing movement towards accepting neurological variation, neurodivergent people still have to get diagnosed so that they can obtain the support they need to adapt to a world that does not accommodate neurological diversity. A diagnosis, therefore, moves from being a signifier of pathology to being an empowering tool for accessing support and rights in a world that is not yet designed to accommodate neurological diversity.
The words we choose to use also matter greatly. Using identity-first language — "autistic person" instead of "person with autism" — is part of this paradigm shift and recognises neurodivergence as being a core element of one's identity, as opposed to something happening to them. Research shows that autistic adults overwhelmingly prefer identity-first language (87%), viewing autism as an integral part of their identity (Taboas et al., 2023). Choosing this language is making a fundamental statement about one's sense of belonging and worth.
Psychological Freedom in Understanding
For many neurodivergent people, diagnosis gives them a huge amount of psychological freedom. After spending years trying to make sense of why they think, feel or behave differently than others, a diagnostic explanation turns their whole life story around. Their struggles are now recognised as being due to a neurological difference, not as personal failures.
The psychological release experienced by neurodivergent people is especially significant for those who have spent years "masking" — consciously hiding their neurodivergent traits so as to seem neurotypical. Studies show that chronic masking leads directly to anxiety, depression, and burnout (Mantzalas et al., 2022; Raymaker et al., 2020), resulting in many saying they have completely disconnected from themselves. Diagnosis allows them to stop masking and begin their journey of self-acceptance and authenticity.
Another layer of complexity is added by the fact that neurodivergence is inherited. Estimates of heritability range from 70–90% for autism (Bai et al., 2019; Sandin et al., 2017) and 70–80% for ADHD (Faraone & Larsson, 2019; Grimm et al., 2020), which means that diagnosis for many people is the moment when they realise that they see neurodivergent traits in all members of their family systems.
The Window of Opportunity: How Early Diagnosis Matters
When a neurodivergent child receives a diagnosis, it has a major impact on how well they do in school and in life. That is because when children receive a diagnosis of a neurodevelopmental disorder (e.g., autism), and then receive early supports to help develop skills and learn to adapt to a world that is not always accommodating to neurodivergent individuals, they are able to take advantage of their brain's great ability to adapt — called neuroplasticity — to develop skills and create adaptations during a time when the brain is still developing rapidly. Neuroplasticity is a complex process with increased sensitivity during foetal and infant brain development, and early intervention can capitalise on this enhanced plasticity to facilitate cortical specialisation for social and linguistic information (Chen et al., 2024; Dawson, 2008; Sullivan & Dawson, 2014).
There is a bias in the way diagnoses are made and recorded, with respect to how often females or gender non-conforming individuals are diagnosed as autistic. While the ratio of autism diagnosis in boys vs girls is often stated as 4:1 (boys to girls), recent studies indicate that this ratio is likely to be significantly lower — perhaps even 3:1 or closer to 2:1 — as we continue to learn more about the various forms of presentation of autism (Loomes et al., 2017). Diagnostic tools and criteria were historically developed based on observations of predominantly white, male children (Kalb et al., 2022; Williams & Casanova, 2022), which has resulted in systematic underdiagnosis of girls, women, and people of colour.
Receiving a diagnosis at an early age allows families to find out how to best support their child and to establish relationships with organisations that provide support and advocacy. When provided with these types of resources, children are more likely to succeed academically, socially and emotionally, and are less likely to experience secondary mental health issues as adults.
The Long-Term Cost of Missed Diagnosis
On the other hand, if a neurodevelopmental disorder goes undiagnosed, the long-term effects can be devastating. Individuals who are unaware of their neurodevelopmental differences are more likely to experience anxiety, depression, substance abuse, and social difficulties. Chronic stress and frustration of navigating an environment that does not support neurodivergent individuals results in what researchers call "autistic burnout," which requires extensive recovery time (Arnold et al., 2023; Raymaker et al., 2020).
Additionally, undiagnosed neurodivergence often results in poor academic performance and lack of success in the workplace. Students who are not diagnosed or supported may be labelled as lazy or defiant, leading to a lifelong negative association with learning. Employees who go undiagnosed may struggle with the social aspects of working, sensory overload, and communication expectations, leading to frequent job loss or underemployment, despite possessing many abilities.
Undiagnosed neurodivergence causes problems not only at the individual level, but also at the systemic level. Diagnostic criteria and assessment tools were largely based on observations of white, middle class boys and do not reflect the diversity of neurodivergent presentations, such as those of women, people of colour and individuals from different cultural backgrounds (Durkin et al., 2017; Maye et al., 2021). These biases result in unequal access to diagnosis and support, with Black and Hispanic children significantly less likely to receive timely autism diagnoses compared to their white peers (Mandell et al., 2009).
Embracing the Label for a Better Future
A neurodivergent diagnosis is a profound step toward self-discovery and empowerment. In the age of neurodiversity, the diagnostic label is vital for accessing accommodations, fostering self-acceptance, and challenging systemic bias.
For individuals, a diagnosis offers psychological freedom, reframing personal "failure" as neurological difference, enabling authenticity and shedding masking. For families with children, early diagnosis is a crucial opportunity to leverage neuroplasticity and secure supports for success.
Conversely, failure to diagnose leads to higher rates of mental health issues, burnout, and chronic underachievement, a systemic failure due to historically limited diagnostic criteria.
Embracing the label acknowledges a core identity, building a more inclusive world where difference is recognised human variation. The label is the key to knowledge, community, rights, and a life lived in full understanding.
Linked Posts
References
Arnold, S. R. C., Higgins, J. M., Weise, J., Desai, A., Pellicano, E., & Trollor, J. N. (2023). Confirming the nature of autistic burnout. Autism, 27(4), 1188–1194. https://doi.org/10.1177/13623613221147410
Bai, D., Yip, B. H. K., Windham, G. C., Sourander, A., Francis, R., Yoffe, R., Glasson, E., Mahjani, B., Suominen, A., Leonard, H., Gissler, M., Buxbaum, J. D., Wong, K., Schendel, D., Kodesh, A., Breshnahan, M., Levine, S. Z., Parner, E. T., Hansen, S. N., ... Sandin, S. (2019). Association of genetic and environmental factors with autism in a 5-country cohort. JAMA Psychiatry, 76(10), 1035–1043.
Chen, L., Shi, J., Wang, X., Liu, Y., & Zhang, H. (2024). Neuroplasticity of children in autism spectrum disorder. Frontiers in Psychiatry, 15, Article 1362288. https://doi.org/10.3389/fpsyt.2024.1362288
Dawson, G. (2008). Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorder. Development and Psychopathology, 20(3), 775–803. https://doi.org/10.1017/S0954579408000370
Durkin, M. S., Maenner, M. J., Meaney, F. J., Levy, S. E., DiGuiseppi, C., Nicholas, J. S., Kirby, R. S., Pinto-Martin, J. A., & Schieve, L. A. (2017). Socioeconomic inequality in the prevalence of autism spectrum disorder: Evidence from a US cross-sectional study. PLoS ONE, 12(5), Article e0155399.
Faraone, S. V., & Larsson, H. (2019). Genetics of attention deficit hyperactivity disorder. Molecular Psychiatry, 24, 562–575.
Grimm, O., Kranz, T. M., & Reif, A. (2020). Genetics of ADHD: What should the clinician know? Current Psychiatry Reports, 22, Article 18.
Kalb, L. G., Vasa, R. A., Ballard, E. D., Broder-Fingert, S., Daniels, A. M., Gatto, C. L., Gioia, G. A., Goodman, A., Hess, K. A., Kasari, C., Kuhlthau, K. A., Lounds Taylor, J., Menon, D., Ochoa, Y., Odom, S. L., Sather, L., Tomczuk, L., Vasa, R. A., & Mandell, D. S. (2022). Analysis of race and sex bias in the Autism Diagnostic Observation Schedule (ADOS-2). JAMA Network Open, 5(4), Article e229498.
Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child and Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013
Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., Giarelli, E., Morrier, M. J., Nicholas, J. S., Pinto-Martin, J. A., Shattuck, P. T., Thomas, K. C., Yeargin-Allsopp, M., & Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493–498.
Mantzalas, J., Richdale, A. L., Adikari, A., Lowe, J., & Dissanayake, C. (2022). What is autistic burnout? A thematic analysis of posts on two online platforms. Autism in Adulthood, 4(1), 52–65.
Maye, M., Boyd, B. A., Martinez-Pedraza, F., Halladay, A., Thurm, A., & Mandell, D. S. (2021). Biases, barriers, and possible solutions: Steps towards addressing autism researchers' under-engagement with racially, ethnically, and socioeconomically diverse communities. Journal of Autism and Developmental Disorders, 52(9), 4206–4211. https://doi.org/10.1007/s10803-021-05250-y
Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). "Having all of your internal resources exhausted beyond measure and being left with no clean-up crew": Defining autistic burnout. Autism in Adulthood, 2(2), 132–143.
Sandin, S., Lichtenstein, P., Kuja-Halkola, R., Hultman, C., Larsson, H., & Reichenberg, A. (2017). The heritability of autism spectrum disorder. JAMA, 318(12), 1182–1184. https://doi.org/10.1001/jama.2017.12141
Singer, J. (1998). Odd people in: The birth of community amongst people on the autism spectrum: A personal exploration of a new social movement based on neurological diversity [Honours thesis, University of Technology Sydney]. https://www.semanticscholar.org/paper/Odd-People-In-%3A-The-Birth-of-Community-Amongst-A-Singer/0c37c5b0fa3ef3dc4e4e6d33a5a2d95a7d62ca7f
Sullivan, K., & Dawson, G. (2014). Potential neural mechanisms underlying the effectiveness of early intervention for children with autism spectrum disorder. Child Development Perspectives, 8(2), 119–125.
Taboas, A., Doepke, K., & Zimmerman, C. (2023). Preferences for identity-first versus person-first language in a US sample of autism stakeholders. Autism, 27(2), 565–570. https://doi.org/10.1177/13623613221130845
Williams, Z. J., & Casanova, M. F. (2022). Race and sex bias in the Autism Diagnostic Observation Schedule (ADOS-2) and disparities in autism diagnoses. JAMA Network Open, 5(5), Article e2213236.
Comments