“Well, they never looked autistic, and now all of a sudden, they are autistic! I don’t get it.”
Unfortunately, I’ve heard this or similar sentiments about late autism, ADHD, or learning differences such as dyslexia diagnoses from many managers and HR personnel. “How can this be? How did they get so far without being diagnosed? Is this for real?”
While curiosity is understandable, disbelief can be hurtful. Some extent of disbelief when it comes to non-apparent differences or conditions has always been a problem. However, when sensationalist stories about neurodivergent experiences appear in the media, the treatment of adult-diagnosed neurodivergent individuals can become particularly problematic. The cultural portrayal of developmental differences as something associated with noticeable impairments in children can also interfere with understanding the phenomenon of late diagnosis in adults.
Nevertheless, adult diagnosis of developmental differences is recognized and well-documented. Numerous studies identify the reasons for late diagnosis. Generational differences, gender disparities in diagnosis, cultural factors, socioeconomic barriers, and masking all contribute to delayed identification in all neurodivergent conditions, although autism is the most researched.
As a notable example, estimates of autism have changed with improved diagnostics. While older estimates suggested that autism occurs in approximately 1% of the population, modern estimates are close to 3%. However, the diagnosis is very unevenly distributed due to the historical lack of diagnostic opportunities for specific groups. A substantial body of research highlights the underdiagnosis of older individuals, women, people of color, and those from lower socioeconomic backgrounds.
Generational Differences. Diagnostic criteria and awareness have evolved over time, leading to better recognition of neurodivergent conditions in younger generations. However, individuals from older generations have grown up without the same understanding and resources, leading to missed or delayed diagnoses or misdiagnoses of depression, anxiety, and other conditions.
The Gender Gap: One significant aspect influencing late autism diagnosis is the gender gap. Historically, autism has been predominantly associated with male presentation, and few clinicians are familiar with the female autism profile, resulting in missed or delayed diagnoses for women. The presentation of autism in girls and women can differ from the stereotypical male traits. In some cases, suspicion of autism has been dismissed based on the false belief that “only boys have it.” As a result, many girls and women go undiagnosed until later in life, hindering their access to appropriate support.
Females who are diagnosed in childhood have more severe autistic difficulties as compared to males, and greater cognitive and behavioral problems. Because females are not “seen” as autistic, teachers are less likely to notice and report autistic traits in their female students. Women are also often diagnosed with depression or anxiety rather than autism. Ineffective treatment can contribute to feelings of personal failure.
A similar gendered dynamic exists with ADHD – females are less likely to be identified and referred for treatment than males. The referral bias may have influenced the researchers’ ability to separate the possible gender differences in ADHD presentation from the effects of the lack of referral in females.
Cultural Perspectives: Cultural factors and varying ways of explaining psychological phenomena within different communities can impact diagnosis rates. This may often result in national and ethnic disparities.
Character Attributions. In cultural contexts and families with limited neurodiversity awareness, people may attribute behaviors related to developmental differences to laziness, “not paying attention,” or “being bad” on purpose. This may result in the mistreatment of children, as well as the mistreatment of parents by other adults for their supposed “bad parenting.” Individual and family psychological suffering may create significant trauma dynamics, further complicating a diagnosis.
Racial, Ethnic, and Cultural Bias in Diagnosis. A stereotypical autistic person is a white boy. Hence, children and adults from Black and Brown communities traditionally have been less likely to receive an autism diagnosis. Black boys might be misdiagnosed with ADHD or a conduct disorder rather than autism. Ethnically and linguistically different immigrant groups may also be impacted by the effectiveness of diagnostic instruments for these populations, as documented by a study of dyslexia diagnosis in immigrant, bilingual populations in Netherlands.
Class Disparities and Access to Resources: Socioeconomic factors play a significant role in late diagnosis. Individuals from low socioeconomic backgrounds may face barriers in accessing diagnostic services due to limited financial resources or inadequate healthcare systems. This lack of access can contribute to delayed identification and intervention, prolonging the journey to diagnosis and sometimes completely excluding individuals from diagnostic opportunities.
Intelligence and Giftedness: Individuals who are highly intelligent or gifted are likely to be missed in autism, ADHD, dyslexia, dyscalculia and Non-Verbal Learning Disability (NVLD), and other related diagnoses because their abilities mask or compensate for their challenges. Their neurodivergence manifestations may also be attributed to being “bad.” In a misinformed dynamic that adds to psychological trauma, when gifted autistics are bullied, they are often blamed for “provoking” the bullies, leading to internalized blame, shame, and a sense of brokenness.
Masking. In the face of social rejection, neurodistinct individuals, especially females and those with higher intelligence, may develop masking behaviors, consciously or unconsciously mimicking social norms to “fit in” and avoid criticism. This can mask autistic or other neurodivergent traits and delay diagnosis.
There is growing recognition of the lasting impact of the diagnostic delay on individuals. Late-diagnosed individuals often endure a lifetime of trauma resulting from their delayed understanding of self, challenges faced without appropriate support, and societal misconceptions and mistreatment – in addition to sensitivities associated with difference in neurological wiring. This makes trauma-informed management practices and fostering a supportive and inclusive work environment a must. Unfortunately, workplaces are often an additional source of trauma for undiagnosed and late-diagnosed neurodivergent. In many cases, work – related stress is the “last straw” leading to a crisis that results in a diagnosis.*
What Can Trigger an Adult Diagnosis:
Stories of many late-diagnosed adults show similar patterns. Autism, as well as ADHD, is often identified in parents after it is identified in their children. It may also show dramatically, such as in the form of autistic burnout, when individuals experience an increase in demands or challenges and their coping resources are drained.
In many cases, challenges and changes that trigger an adult diagnosis can be work-related.
From the perspective of the social model of disability, the struggle of developmental differences such as autism or ADHD often reflects a mismatch between an individual and the environment. A change in the workplace context can create of increase the mismatch, exceeding individuals’ coping capacity. This can even occur while someone is still in “the same” job. In the case of a long-term employee, it is possible that someone has been thriving in their position, until the organization has changed their work environment or their job responsibilities. For example, all items below – and many others – substantially change one’s work environment:
- Increase in the workload due to layoffs, unfilled vacancies, or otherwise taking on someone else’s responsibilities (e.g., covering someone’s parental leave).
- Change in responsibilities leading to increased social, political, or other demands idiosyncratically taxing to the individual (multitasking, interruptions).
- Reorganizations leading to new reporting lines and work responsibilities.
- A new manager who is less flexible, empathetic, or competent.
- Increased social demand from a new manager or a coworker.
- Change in responsibilities requiring more customer contact.
- Change in organizational climate, specifically, an increase in political behavior or within-organization competition.
- Bullying/increased organizational permissiveness of bullying.
- Being moved from a private office into an open office, or into an otherwise taxing sensory environment (in my case, a move to a much colder building with no ability to regulate the temperature one of the “last straws”).
For many late-diagnosed individuals, diagnosis can bring on a range of emotions, from relief to regret. It may elicit strong emotions of grief or sadness and a sense that some of life’s struggle could have been avoided. It is also often a time of increased self-awareness and self-acceptance. It can bring the realization that their experiences were not solely due to personal shortcomings but instead rooted in neurodivergent wiring that is different, not deficient. A caring workplace support can help make the diagnosis a start of a positive chapter in one’s life.
Supporting Late-Diagnosed Employees
It is important to support an employee with individualized consideration and accommodations. At the same time, creating inclusive work environments that support late-diagnosed employees also means creating work environments that will support all employees. Promoting understanding, empathy, and acceptance benefits everyone’s wellbeing. Here are some strategies to consider:
Increase awareness and understanding of neurodiversity: Management, HR personnel, and all employees should be educated about neurodiversity and the unique experiences of late-diagnosed individuals, as well as empathy and inclusive communication. Workshops, seminars, guest speakers or informal sharing by employees can help provide insights into neurodivergent experience and strategies for creating an inclusive environment. This type of education can also help bust misconceptions and reduce stereotyping and sigma.
Make offering accommodations and adjustments the norm rather than an exception: It is essential to provide reasonable accommodations tailored to the specific needs of late-diagnosed individuals. This may include flexible work arrangements, job-crafting, creating sensory safety, or providing assistive technologies. By actively seeking employee input, organizations can ensure that the workplace environment is conducive to their success.
Encourage a culture of inclusion and appreciation: Cultural norms that value diversity in all its forms and prioritize open communication benefit all team members, and promote the safe disclosure of neurodivergent identities. It is important to also specifically appreciate the distinct perspectives and valuable contributions that neurodivergent individuals bring to the workforce.
Create support networks and employee resource groups: Support networks and employee resource groups specifically dedicated to neurodivergent individuals can provide a valuable platform for sharing experiences, exchanging ideas, and offering mutual support. Regular opportunities to meet, networking events, or mentorship programs can nurture a sense of belonging.
Make all practices neuroinclusive. Organizations should regularly review and update policies and practices to ensure neuroinclusion. This means evaluating recruitment and hiring processes to minimize bias, revising performance evaluation criteria to account for diverse strengths and communication styles, preventing bullying and incorporating feedback from neurodivergent employees into decision-making processes. Embedding principles of intersectional inclusion – employee participation, focusing on outcomes, flexibility, organizational justice, transparency, and the use of valid tools in decision making across all aspects of employment benefits all. So do trauma-informed organizational practices.