Updated: Jun 3, 2021
Quick but Important Disclaimer:
We chose to use the word womxn in our campaign title, as the campaign aims to be inclusive to the LGBTQIA+ community. We wholeheartedly understand and respect that individuals may prefer an alternate term. We are open to opinions and suggestions as we want to learn when we can be more inclusive. We will interchange the use of the words "non-men," "woman," "women," and "womxn" in our published articles.
grit & flow understands that there are multiple ways to refer to individuals on the spectrum. We prefer to use identity-first language, as does the author of this paper, but that is not all we will use as we try to be inclusive. We will interchangeably use "autistic person," "person on the spectrum," and "person with autism." Also, our published works include using identity-first language for disabled individuals but understands that others may prefer "person with a disability," so we also interchange these terms.
You know that feeling when you wake up in the morning after a night's rest, and it feels like you never slept? Autistic people can often wake up like this, maybe even every day. They experience poor sleep, insomnia, nightmares, and gastrointestinal (GI) issues that disrupt sleep, and then the lack of sleep impacts functioning.
What do you do when you hear a loud noise? You probably jump a bit, maybe flinch. Like many other autistics, I am challenged with sensory input. Depending on the volume and duration of the sound, it can be intense enough to bring me to tears. The noise can cause an internal parade of chaos, where I barely think or focus, and my entire body feels on edge as fight or flight responses kick in. Lights, sounds, textures, tastes, and touch can all be intense. I sometimes wear pink-colored glasses to warm the appearance of light to reduce its intensity. I wear noise-canceling headphones a lot, and after trying out a few basic options, I spent close to $350 for the ones I currently use.
In addition to sleep disturbances and sensory dysregulation, many autistics also experience physical disability, such as Fragile X Syndrome, epilepsy, debilitating migraines, dysgraphia, and more. I am included in this bunch. Around the age of 20, I was diagnosed with a genetic condition after an extensive workup to try and figure out the source of the pain. For a short time, I used mobility devices to get around; lifestyle changes have since removed the need for them. The pain and mobility issues did not slow me down, but I was tired all the time, and when it was at its worse, the pain could be distracting when trying to work. I learned that the genetic condition I was diagnosed with has a higher prevalence in the autistic community than in the general public. No one understands why, but this finding motivated me to learn what else I experienced that may be common in other autistics.
Last week, our campaign focused on relationships, and we talked about how some autistic people experience social communication. This week we will touch on aspects of the body that impact the lives of some autistics. This paper addresses how elements of our bodies can affect us in the workplace, including food, menstrual cycles, chronic health conditions, and gender. One of the significant components to sustaining an inclusive culture that fosters belonging is doing your personal best when it comes to educating yourself on the aspects of another's life that you may be unfamiliar with and perhaps uncomfortable learning.
Eating and Food:
An autistic's relationship with food can be a central challenge of their life. There are several reasons why this might be, and the reasons may not be what you think. Eating can be associated with gastrointestinal upset that results in food avoidance.[i] Others experience interoception, or the inability to discern internal sensations, and may not realize when they are hungry or full.[ii] Sensory sensitivities can make the taste and texture of food revolting, which can also lead to food avoidance. I rarely feel hungry due to interoception, and most of the time, when I eat, my stomach tells me how unhappy it is with my decision due to GI issues. Sadly, I do not enjoy the texture of many foods and often have trouble knowing what I "feel" like eating. If I eat something that my mouth does not want because of its texture or taste, I can barely get the food down. During my first year of marriage, I tried to eat eggs many times with my partner for breakfast, and I spent most of the meal covering my mouth so he wouldn't see me struggle to swallow the food. Many autistic persons have a different relationship to food than that of non-autistics. We mentioned in Week 1 that 25% or more of anorexics might be on the spectrum.[iii]
Autistics experience a general lack of desire to eat in communal or overstimulating areas, primarily due to sensory aspects of these situations.[iv] Social events that involve food may also be avoided due to the compounded stress of social interaction and food consumption.[v] Some autistics, like myself, might benefit overall from the ability to hyper-focus on tasks and complete a large amount of work in a short time. Still, hyper-focusing can also lead to a tendency to forget to eat or the inability to feel hungry due to an intense level of focus.
Suppose workplace situations that involve food, such as eating in a breakroom or cafeteria and workplace social events are avoided by the autistic. How might coworkers and supervisors perceive them? A few of those I interviewed mentioned that at work, they generally eat alone. The lack of participation in the social aspects of eating may contribute to the autistic employee being viewed as unfriendly, lacking group participation skills, or worse. Humans are prone to all types of bias, including the similarity-attraction effect, which contributes to some employers hiring and retaining employees that are like-minded and comfortable to be around.[vi] More about that later.
As mentioned, autistic individuals may be physically disabled or experience challenges with chronic illnesses. The autistic population may be more likely to experience epilepsy and seizure disorders as well as genetic conditions like Ehlers-Danlos and Fragile X. The presence of these comorbidities further complicates and exacerbates the challenges autistic adults might face in the workplace. They may result in mobility challenges and the potential for regular medical care to maintain health and wellbeing. Working in a place that offers helpful accommodations and a flexible schedule can be the most beneficial for these folks.
Research has also indicated that when compared with non-autistics, autistics experience a higher rate of premenstrual dysmorphic disorder, polycystic ovarian syndrome, and dysmenorrhea.[i] Many of those who struggle with these conditions cite challenges that temporarily impact them in the workplace, ranging from sensory overload to the inability to concentrate and focus because of elevated levels of pain.[ii] These can lead to work productivity lulls and contribute to missed work, mainly if the autistic person works in a stressful or non-supportive work environment.
Think about your company's procedure for requesting accommodations. Is the procedure lengthy or complicated? Some of our interviewees expressed that they would not ask for official accommodations due to the intensity of the process. Does your accommodation procedure let employees know what the definition of "reasonable accommodation" is? Do they know there is a negotiation process? Not all employees will know exactly how to ask for an accommodation; no one really informs us before entering the work world how to go about it. This means some may ask for unreasonable accommodations that some companies may not know they can negotiate for a more reasonable one.
Also, employees do not always know that they can negotiate for a different accommodation if the one they asked for is denied. The more clarity and convenience you can build into your accommodation process, the more likely employees will disclose. The organization will better understand the diversities of their workforce and how best to support them when they incorporate these elements. If employees have what they need to do the job to their best ability, the company and the employee share a win.
Gender diverse autistics experience additional discrimination, especially in the workplace. I feel it necessary to mention that, as a cis-gendered person, I can only share research and conversations with members of the LGBTQIA+ community on this topic.
Academic research is sorely lacking in areas of gender diversity, so for the best understanding of their lives and experiences, engage in meaningful conversations with the LGBTQIA+ community or establish employee resource groups to assist with inclusion efforts. With that said, high rates of gender diversity have been reported in autistic persons. While those assigned the gender of female at birth experience it more often, autistic people as a group are more likely to embrace gender diversity than non-autistics.[i] The potential for gender discrimination, in addition to being autistic, further impacts the individual on the job.
Undergoing a gender transition in the workplace discloses to others the employee's transgender identity, making them more likely to experience workplace discrimination. You can probably imagine how difficult this may be for an individual going through transition while remaining in the same workplace. Some research participants praised their workplaces for their support and acceptance during the transitioning process, stating that "they were shocked at how smooth" the process went.[ii] In contrast, many others (71%) attempted to hide their transition, and 57% reported delaying their transition to avoid workplace discrimination.[iii]
Discrimination during transition comes in the form of being fired or denied employment, being denied access to restrooms, and experiencing physical threats and emotional abuse.[iv] Additionally, many transgender and non-binary individuals struggle with a boss or coworker deliberately using the wrong pronoun or not making it a priority to master using the correct ones. A transgender person's experiences of discrimination may impact their sense of control and the likelihood that they might attempt suicide or struggle with substance abuse.[v] As mentioned, being autistic invites discrimination in the workplace due to how others interpret autistic traits; this becomes even more so for autistics who are transitioning in the workplace. We are all the same human when we leave work and enter our personal lives again, which means that what is said in the workplace transfers into our personal lives, influencing the thoughts and feelings we generate about ourselves and our place in the world.
The workplace climate plays a significant factor in the stress, anxiety, depression, and potential for discrimination. I mentioned the similarity-attraction effect earlier. It is important to note that it may create an unwelcome work climate when employers recruit in this manner. Research stated that "employers may engage in what has been termed 'homosocial reproduction,' hiring workers who reflect their own identities and characteristics."[vi],[vii] This can impact how coworkers react when diversity initiatives are established. A more diverse set of applicants are hired. Research stated 80% - 100% of transgender participants reported feeling distressed, some of which was linked to the fear of discrimination and job loss, and 79% specifically mentioned feeling anxious and depressed during their transition in the workplace.[viii]
Supportive organizational climates, general social support, identity unity, and acceptance and understanding of the transitioning process were associated with improved mental health and positive outcomes in the workplace.[ix] To help workplaces become more inclusive, transgender people shared the need for formal and informal training on transgender issues to increase sensitivity and understanding.[x] One of the most inclusive practices for employers remains that all should provide single-stall, genderless bathrooms for all employees. Finally, gender-neutral work uniforms or dress codes will also reduce the distress during their transition and create a more gender-friendly workplace.[xi]
What can employers do with all of this information?
If your company does not already, bring the need for acceptance and training that focuses on the LGTBQIA+ community to your HR department to reduce gender discrimination. Coworkers and mentors can provide some support through environmental conditions that acknowledge sensory sensitivities. For those who tend to hyper-focus, reminders to eat or small breaks from work encouraged by management might help reduce the tendency to skip meals.
Many autistics are successful in full-time positions but understanding the need to potentially work reduced hours or reduce the workload of stressful tasks during heightened periods of physical discomfort may help to avoid overload and burnout. It is also great practice to have rooms or areas where individuals can minimize sensory dysregulation and maximize work productivity. These rooms can also be used for new moms during breastfeeding stages and individuals who pray multiple times a day. All these measures, including unisex uniforms for inclusivity, training for all, HR support and compassion, and clear procedures for reporting discrimination in the workplace with accountability, help increase the psychological safety of all and increase productivity in the workplace.
As you can see, autistic bodies can be complex. When an organization strives to support the whole person, the company can experience increased inclusion and belonging. This week our interviews will highlight some of the topics discussed in this paper. This week we will highlight some of the experiences autistic employees may have related to their bodies and how they impact job satisfaction and retention. grit & flow has a unique understanding of this content from interviews and conversations with autistics and other neurodivergent persons. If you miss any of the content, visit our grit & flow LinkedIn page.
[i] Cooper, K., Smith, L. G. E. & Russell, A. J. (2018). Gender identity in autism: Sex differences in social affiliation with gender groups. Journal of Autism Development Disorders, 48, 3995–4006. https://doi.org/10.1007/s10803-018-3590-1, p.3996 [ii] Schilt, K. & Wiswall, M. (2008). Before and after: Gender transitions, human capital, and workplace experiences. The B. E. Journal of Economic Analysis & Policy, 8(1), 1-26, p.16 [iii] Brewster, M. E., Velez, B. L., Mennicke, A., & Tebbe, E. (2014). Voices from beyond: A thematic content analysis of transgender employees’ workplace experiences. Psychology of Sexual Orientation and Gender Diversity, 1(2), 159-169. http://dx.doi.org/10.1037/sgd0000030, p.160 [iv] Ibid [v] Ibid [vi] Bird, S. R. (1996). Welcome to the men’s club: Homosociality and the maintenance of hegemonic masculinity. Gender & Society, 10(2), 120-132. doi:10.1177/089124396010002002 [vii] Schilt et al. (2018). Gender, human capital, workplace, p.4 [viii] Brewster et al. (2014). Voices from beyond, p.165 [ix] Ibid, p. 161 [x] Ibid, p. 167 [xi] Ibid, p.167
[i] Toy, H., Herguner, A., Simsek, S., Herguner, S. (2016). Autistic traits in women with primary dysmenorrhea: A case-control study. Neuropsychiatric Disease and Treatment, 12, 2319-2325. doi: 10.2147/NDT.S114439, p.2323 [ii] Steward, R., Crane, L., Roy, E. M., Remington, A., & Pellicano, E. (2018). “Life is much more difficult to manage during periods”: Autistic experiences of menstruation. Journal of Autism and Developmental Disorders, 48, 4287-4292. https://doi.org/10.1007/s10803-018-3664-0, p.4291 [i] Kinnaird, E., Norton, C., Pimblett, C., Stewart, C., & Tchanturia, K. (2019). Eating as an autistic adult: An exploratory qualitative study. PLoS ONE, 14(8). https://doi.org/10.1371/journal.pone.0221937, p.5 [ii] Ibid [iii] Brede, J., Babb, C., Jones, C., Elliott, M., Zanker, C., Tchanturia, K., … Mandy, W. (2020). “For me, the anorexia is just a symptom, and the cause is the autism”: Investigating restrictive eating disorders in autistic women. Journal of Autism and Developmental Disorders, 50, 4280-4296. https://doi.org/10.1007/s10803-020-04479-3, p.4281 [iv] Ibid [v] Ibid [vi] Graves, L. M. & Powell, G. N. (1995). The effect of sex similarity on recruiters’ evaluations of actual applicants: A test of the similarity-attraction paradigm. Personnel Psychology, 48(1), 85-98. https://doi.org/10.1111/j.1744-6570.1995.tb01747.x