Many employees don't disclose their disability, and employers need to move past 'transactional accommodations,' says expert
On July 26, Governor of California Gavin Newsom declared July 26 would be known as “Americans with Disabilities Act Awareness Day” in California — 33 years after the Act was signed into law in 1990.
And while the systemic changes the Act has brought about are worth celebrating, many neurodiverse individuals still face considerable barriers — and one of the first hurdles is disclosing their disability to HR or a manager.
While 93% of 483 U.S. corporations encouraged employees to self-identify as disabled, only 4.5% of them chose to do so, according to the 2023 Disability Equality Index (DEI) from Disability:IN (formerly the US Business Leadership Network), which advocates for more disabled representation in corporate America.
This number, far below the 25% of people in the workforce who identify as disabled, according to a BCG survey, reveals a hesitancy to disclose.
Dr. Hala Annabi, associate professor of information science at the University of Washington, specializes in neuro-inclusivity in organizations — particularly how to recruit, retain and advance individuals with autism. ADHD, dyslexia, OCD and Tourette’s syndrome are other examples of neurodiversity.
“Most employers that I talk to state that they wish that more employees would disclose and engage with them, so that they can provide the right support,” Annabi told HRD.
To address hesitancy around disclosure, Annabi identified three distinct areas that HR leaders can focus on to increase neuro-inclusivity in their workplaces. Awareness and action around these areas can help facilitate the disclosure process and take the onus off the individual to normalize neuro-inclusion.
1. Fear of stigma around neurodiversity
Fear of judgement and “self-concept barriers” are especially present for older employees who may have been diagnosed later in life, and who may have experienced any number of negative reactions to their divergence throughout their professional careers. Because of those experiences, they may simply not trust organizations enough to disclose. And, Annabi says, their fears are founded.
“Throughout schooling, throughout their life, they've been told that they are not enough. They've been criticized for their behavior, and their behavioral training and supports have been really pushing them to change and assimilate and ‘mask’.”
As an example, Annabi describes a common disclosure experience: an employee will share their diagnosis with a manager, who will then tell them that because of their good work performance and lack of visible or problematic symptoms, they are “fine” or “doing great.” Essentially, they are praised for masking, or hiding, their divergent traits, and their disorder is minimized.
2. Complex or unclear processes around disclosing neurodiversity
A second area which HR departments can address are the often complex and intimidating procedures around disclosure.
“The processes are sometimes very complicated, and not easily discoverable or understood,” Annabi said. “So an advocate tries to figure out ‘What's the return on investment for me to engage in this process and expose myself?’”
Annabi also points out that some individuals don’t want their colleagues and supervisors to have to adjust or make accommodations for them, so they choose to keep quiet rather than initiate the process.
“We have a very high barrier to cross, with educating accommodation professionals and HR professionals and talent development professionals around disclosure and around inclusion,” she said.
3. Increase neurodiversity inclusion with a ‘social model’ of disability
For neurodiverse individuals to truly feel included in work environments, there needs to be a shift away from the medical, compliance-focused model of disability, Annabi said.
"At different times in our lives, we all face different challenges. And we might face disability at different points, whether it's because we got sick, whether it's because we had a life event that had an emotional consequence. We normalize it… and the environment can adjust around us, rather than a disabled person continuously trying to adjust and continuously trying to push the environment to be inclusive of them.”
Annabi calls these frameworks ‘success enablers’ rather than accommodations, placing responsibility with employers to present staff with open discussions around what they need to succeed, as individuals.
“Now, inclusive organizations are giving a range of possibilities that will help with a challenge or a need. So instead of saying, ‘Hey, what do you expect?’ [They say] ‘Here are some things to consider, would any of these work for you? And how can we make them work?’”
