An Autistic Woman’s Guide to Asking for Help: Self-advocacy in the Workplace When Living With a Non-visible Disability
As part of the DisAbility Affinity Group’s spotlight month, Trisha Matthews, the AG’s professional development chair, reflects on her experience advocating for herself as a woman engineer with autism.
- October 8, 2024
Note: In this article, the author uses both identity-first and person-first language. For example, “autistic person” vs. “person with autism.” The author prefers identity-first language when referring to herself, as she believes that any disability should not be considered shameful. However, people with disabilities have historically been referred to by the name of their disability, which can deny their individuality and feel dehumanizing, and may prefer person-first language for this reason. Always approach language around disability respectfully; if you’re not sure how to refer to someone, ask them.
Growing up, I was taught that disability was something that affected an unlucky few — that “disabled” was the polite way to refer to a few small groups of people: wheelchair users, blind people, and deaf people. In truth, around three in every 20 people globally have some form of disability. And for a billion people across the world, their disability is invisible. (Yes. Really. One billion people.)
Some examples of invisible disabilities include:
- Physical health conditions (such as chronic pain or fatigue and chronic illnesses like diabetes, lupus, migraine, and sleep disorders)
- Mental health conditions (such as anxiety, depression, and obsessive-compulsive disorder)
- Neurodivergence (such as autism, ADHD, and learning disabilities)
Despite the prevalence of non-visible disabilities, social stigma and societal barriers remain high. In one study, more than a third of respondents with disabilities said they have experienced discrimination or bias at work. They are also just as likely to report being ambitious as individuals without disabilities, but are more likely to feel stalled in their careers and more likely to have an idea that would drive value for their companies fail to win endorsement.
With the fear of being “othered” at work, many people with invisible disabilities may not know how to request the help they need to thrive in their careers. I’m going to share my own experience with navigating the workplace with a non-visible disability. I’ll discuss my experience with requesting formal accommodations, as well as the informal paths I’ve taken to meet my health needs and grow professionally without risking the stigma that I could face with explicitly disclosing my autism diagnosis.
How I Created a More Inclusive Work Environment for Myself
Ideally, everyone would work at a company with inclusive policies, empathetic leadership, and equitable teams. That’s not always the reality. In the United States, the Americans with Disabilities Act (ADA) provides legal protection to people with disabilities. Similar protections exist in other countries as well. Under the ADA definitions of disability, there are protections against discrimination for anyone with a condition (“impairment”) that makes it more difficult to do certain activities and interact with the world around them. These same protections extend to people who are regarded as having a disability. These people may not feel that their life is substantially limited, may only be limited by the attitudes of others, or may be treated as having a disability even if they don’t. People who have a past record of disability (such as a misdiagnosis or an injury/illness that doesn’t impact them anymore) are also covered by these legal protections.
My Experience With Formal Workplace Accommodations
Since I work in the U.S., my employer is required to offer me reasonable accommodations per the ADA. The accommodations process is meant to be an interactive process between the employee and employer.
Pre-pandemic, a typical day for me involved going into the office from around 7:30 a.m. to 4 p.m., heading home and falling asleep at 5 p.m., waking up around 9 p.m. to take a shower and maybe eat a quick dinner, and going back to bed at 10 p.m. to do it all over the next day. I was completely exhausted from the mental effort of masking my autistic traits to appear friendly, behaving in line with social norms, and responding correctly to social cues. I was drained by the over-stimulation of the office lighting and noise. I had near-constant migraines from the lighting, to the point where throwing up in the office bathroom from intense nausea was a common occurrence. By the time I got home in the evenings, I had nothing left in me at all. I’d complain to my friends, “All I can do is just go to work and sleep. I don’t have the time or energy to do anything else!” And was met with agreement in how exhausting adulthood was and how unfair it was to not have time for friends and hobbies. No one realized I was speaking literally, and I didn’t realize that the people around me were agreeing figuratively.
It wasn’t until the COVID-19 lockdown forced my company into an extended work-from-home period that I realized that my intense exhaustion was not the normal adult experience. At home, I started to thrive. There were many days where I was still tired after work, but it became increasingly rare to sleep through all my free time. I had time to learn and grow. I had the energy to explore my interests and hobbies. And — since I wasn’t in an environment that drained me and made me physically ill — my workplace performance improved, too. I ranked in the top percentiles in my formal performance reviews at work two years in a row while working from home and only heading in the office as needed.
When my employer announced return-to-office policies, I knew I couldn’t go back to my old way of life. It wasn’t healthy for me, and it didn’t benefit the company either. I decided to seek out a formal workplace accommodation to allow me to work flexibly between home and the office. I value a good in-person brainstorming or collaboration session as much as the next engineer, so I didn’t want to become fully remote while the rest of my team worked in the office — but I did want the freedom to stay home if I felt like that’s what my body needed.
My own experience in requesting accommodations at work was straightforward, but intimidating. I work for a large corporation. I was able to find the request form for workplace accommodations through a quick search on the employee intranet, which is sent to a department dedicated to handling these requests. The automated response that my employer’s accommodations team sent out included a clause that I could be put on an unpaid leave of absence during the workplace accommodations process. This was extremely stressful to read and opened my eyes to the reality of what people with more severe disabilities face every day, despite legal protections. I was asked to have my doctor fill out a form describing my medical necessity and specific accommodation requests. I wasn’t comfortable formally documenting that I’m autistic, since the stigma around autism is still very strong. My doctor and I worked together to fill out the documentation in a way that focused on the conditions I had as symptoms of my autism (hypersensitivity to sound, light, and smell, which trigger nausea and migraine), so I did not have to officially disclose my autism diagnosis. I submitted the form by email and received a very generic recommendation of the accommodations I would be allowed, which I didn’t feel applied to me at all. I pushed back, and after some back-and-forth over email, I was eventually told to work with my direct leader on what an appropriate amount of time in the office looked like. I’m lucky enough to have a very empathetic and supportive manager, so that resolution has worked well for me. I would escalate the situation with the workplace accommodations team and HR if I were to find myself with a less understanding leader in the future.
How I Practice Informal Self-Advocacy
Even with a medical diagnosis and a supportive doctor and manager, I had to strongly assert myself before I was granted the workplace accommodations I needed in order to live a normal life. But there are many reasons why an individual may feel like requesting formal accommodations isn’t a valid option. They may not have a formal diagnosis of their disability or access to a supportive medical staff to provide the necessary paperwork. They may have an unsupportive environment at work, making them unwilling to risk being othered or singled out, especially if they’re part of the 80% of disabled individuals who don’t look disabled. Or they may be unwilling to risk the social stigma around disclosing that they have a condition that’s considered a disability.
Even without formal accommodations, there are steps I’ve taken throughout my career to ensure my success in the workplace. The biggest of these involve using partial disclosure to advocate for my needs. Partial disclosure involves being candid about what you need to succeed, without necessarily getting into the details on why you need it. One example that’s commonly given outside of a disability perspective is around leaving work early to go pick up your children. You don’t have to explain that you’re heading out because your kid has a dance recital tonight. It’s enough to simply say that you need to leave early for family reasons. Or even just that you need to leave early. Full stop.
For me, enacting partial disclosure around my autism works the same way. When my company still worked in cubicles, I put in a request with the facilities team to have the fluorescent light directly above my desk turned off. At the time, I hadn’t been diagnosed, but I knew that the lights made me feel unwell. One morning, the overhead lights came on late and I was chatting with my coworker about how much nicer it was. I mentioned that I wasn’t a fan of the fluorescents and wished they could just be off all the time. He agreed, and we put in the request to turn off the shared overhead light above our cubicles. That experience taught me that I don’t have to explain myself. I can simply state a need or preference and act on it.
I took a similar approach when I brought up to my manager that I was requesting formal accommodations to be able to work remotely some of the time. I chose not to disclose my autism diagnosis to my manager during the accommodations process, since I had just joined the team and that relationship was very new. Instead, I explained to her about the exhaustion I experienced when going into the office full-time, and told her about my hypersensitivity to stimuli, without framing that discussion around my autism. It was still an exercise in trust to be vulnerable with someone I didn’t know well, but I felt safe sharing information that most people would be sympathetic to, while keeping the most stigmatized parts of my identity private.
I’ve found I don’t have to disclose sensitive medical information about myself to get the support I need, both in terms of formal accommodations and professional development. For example, I strongly prefer direct communication and clear instructions, and can struggle with ambiguity. These traits are common among autistic individuals, but not exclusive to the group. I keep an open, candid dialogue with my manager during our one-on-ones. Since I know that I struggle with ambiguity, I’ll outline what I think my priorities are and ask for confirmation or clarification around my work. I’ll also ask people I know well for feedback on whether I’m coming across abrasive or disengaged in meetings, since it can be difficult for me to appropriately match my tone and body language to the social norm. I believe it is important to find a balance between knowing my limitations and understanding that some of my weaknesses are growth areas. It’s important not to burn out, but it’s equally important not to stagnate.
Final Thoughts
I’m just one woman, and I represent a tiny slice of the autistic community and an even tinier slice of the disabled community. Still, I hope I’ve been able to offer some level of insight into invisible disabilities by sharing my lived experience. I also truly believe that self-advocacy at work is beneficial to everyone, regardless of their ability or identity. I hope you come out of this feeling empowered to ask for help.