Category: Fieldwork

Autoimmune Disease in Graduate School

Graduate school in the sciences is, by all accounts, challenging. This is widely publicized and for the most part incoming students have an idea of what hurdles they’ll need to overcome on the road to an MS or PhD, at least in concept. In the U.S., one expects rigorous coursework, difficult exams, hands-on research training from senior lab members, committee meetings, a candidacy exam, a lengthy writing process, and a final defense. The specifics differ between fields and countries, but generally the process is well outlined for prospective graduate students.

When I started my PhD I may not have felt prepared for everything, but I thought I had a complete picture of the challenges I would be facing over the next several years. I couldn’t have been more wrong.

At the end of my first semester I was suddenly hospitalized with severe abdominal pain. One week later I returned home diagnosed with an autoimmune disease for which there is no cure. Over the past nine months I have faced some unique challenges unlike anything I was prepared for when starting graduate school, and now that things have stabilized I feel ready to document what I’ve learned.

The original purpose of this site was to promote inclusion and self-advocacy for autistic natural scientists so this topic may seem out of place, but I feel it’s thematically appropriate given the overlap in coping strategies and resources. Further, unlike the autism issues I tend to focus on, there are a litany of blog posts and articles online discussing living with a chronic illness in grad school. Rather than repeat these existing resources I want to focus on issues most relevant to those with autoimmune diseases. What follows are lists of challenges associated with managing this type of chronic illness in graduate school and resources or support structures helpful in doing so, informed by my experiences over the last nine months.

Challenges

Symptoms

Time management skills are key for graduate students as they try to fit classes, teaching, meetings, research, and maybe even some social time into their days, but unexpected symptoms can throw a wrench into the works even when your planning is on point. My symptoms have cropped up during exams and a couple of key meetings. Aside from being distracted, I was outright embarrassed when I had to cut meetings short to rush to the restroom. I also imagine a symptom-less exam would lead to decreased stress levels and perhaps an increased score compared to one taken in constant pain. Exhaustion is also a major concern, whether as a direct symptom of the disease or while recovering from episodes of pain.

Managing Treatment

In the U.S., managing a chronic health condition requires an additional time commitment beyond scheduling and attending appointments. The American system also places the responsibility to coordinate different bureaucracies on the patient, necessitating several hours on the phone just to receive care. I regularly had to call my insurance company to verify that providers were in-network with my plan and to understand coverage stipulations that I then needed to relay to my doctor. My medicine is purchased from a specialty pharmacy which must also receive approvals from the insurance company, which in my case took about five multi-hour calls over the course of a month. When mistakes inevitably happened it fell to me to figure out what went wrong and to call each company to correct the issue. I estimate that I collectively lost 4-6 hours per week to these responsibilities over the first several months with my diagnosis, severely cutting into my working hours.

Travel Logistics

While not applicable to all autoimmune diseases, the challenges of traveling with medication that requires constant refrigeration have been significant for me. Travel-sized insulin coolers are available that can keep meds cool for 24-30 hours, but trips to remote field stations sometimes take longer than 30 hours and refrigerators/freezers need to be mapped out along the route to refreeze the gel-based ice pack. If you experience a non-trivial loss of power while traveling with medication you may be stuck ordering a replacement dose. Insurance may not pay in all such cases, and specialty medications are often prohibitively expensive without insurance. For example, one dose of my medicine costs about $3,300 as of September 2023. I suspect these prices would be less of a consideration in other countries, though I have no personal experience ordering medicine outside the U.S.

Additional Health Concerns

A common treatment strategy for autoimmune diseases, in which a patient’s immune system attacks tissues it shouldn’t, is to apply an immunosuppressant. An unfortunate side effect is that the patient may now be considered immunocompromised because their immune system is less able to fight off infections. Those receiving this type of treatment need to take additional precautions to prevent infections, as simple colds may last for weeks instead of days, and something more serious like a COVID-19 infection could require hospitalization.

Financial Cost

As I’ve mentioned previously my experience comes exclusively from the U.S. This issue is likely to vary across national boundaries, but it is a significant concern for Americans of nearly any economic standing. Graduate students are likely to have health insurance either through their school, an independent plan, or through a parent. Most student plans will not have small deductibles or out-of-pocket maximums as such benefits drive up premiums. As a result, the out-of-pocket costs of diagnosis, hospitalization, and specialty medications can pose a significant financial burden. In my case the initial hospital stay alone cost over $4,000 after insurance.

Support Structures

Formal School Accommodations

Most universities will have some form of accommodation process for students with disabilities. These programs typically include students with chronic health conditions and are how students are granted extra time on exams, more generous attendance policies, deadline extensions, and other accommodations designed to make coursework more accessible. You will likely need to provide documentation of your condition to access accommodations, but the process should be outlined clearly on the university website. I heavily recommend students with any chronic illness initiate this process as early as possible, even if they don’t think they will use the accommodations. Having a formal agreement in place guarantees you will be given some leeway if your symptoms cause an unexpected problem, even if your instructor tries to put up roadblocks.

Scheduling Freedom

Outside of classes, graduate school is probably one of the most forgiving workplaces for those with chronic illnesses. In most programs you will manage your own schedule and thus be able to plan your days around your symptoms and energy levels. While unexpected flare-ups can still derail meetings and other scheduled commitments, for the most part you should be able to rearrange your schedule as needed.

Lab and Department Support

As a grad student in the sciences your lab will be your primary source for all kinds of support. The professors, postdocs, and other students you work with will ideally support you through both your research and the general struggles of grad school. Your ability to cope with a chronic illness will be greatly aided by flexibility, understanding, and occasional help from your lab-mates. You don’t need to share details of your condition beyond your comfort level, but making your colleagues aware of your struggles will make them more likely to understand if you need to cancel a meeting last-minute or to send you their notes if you miss a class.

Support Groups

At larger universities you may be able to find formal support groups for disabled students, or perhaps for students with chronic diseases specifically. While I haven’t been able to participate in such a group, I have read testimonials from students who highly value them for the chance to talk with people going through similar challenges. When I have met other people with autoimmune diseases it has felt validating and relieving to discuss and complain about the pains we deal with, and that alone has often made me feel more optimistic about managing my condition. Further, comparing notes with other people dealing with the same insurance company can help you cut through the bureaucracy more efficiently than you otherwise would. I recommend taking advantage of campus support groups for these reasons.

Additional Funding

There are a number of funding sources available to graduate students with autoimmune diseases or other chronic illnesses. Sometimes these funds are intended to offset medical costs, other times they are general scholarships or research awards set aside for students with disabilities. Universities will often provide internal awards through a disability office. These are typically less competitive than national awards and should be the first place you look, but there are also external sources like the Foundation for Science and Disability (http://www.stemd.org/) and the Buckfire Law firm (https://buckfirelaw.com/scholarships/disability/). [Note: Both links are current as of September 2023, and each is for a $1,000 award] Look for other funding opportunities like these and keep applying! They exist to support students dealing with chronic illnesses and other disabilities, and there is absolutely no shame in applying to all of them.

Rebate Programs

If you have been prescribed an expensive medication there may be additional ways to pay beyond your insurance policy. Many drug manufacturers make so much money from patients’ insurance companies that they have established programs to ensure patients stay on their medicine. This is often done through rebates, where the manufacturer reimburses patients for some or all of their out-of-pocket expenses up to a certain amount. I’m not an industry expert on this topic, but I would encourage anyone facing untenable medication costs to research support opportunities that may be available through their drug manufacturer.

The greatest lesson of my autoimmune disease experience has been patience. Patience is required to push through the insurance process, patience keeps me calm and reduces the chances of symptom flare-ups, and patience allows me to strategize when tackling travel logistics with my medicine. Patience will help at every stage of grad school, doubly so if you have a chronic illness. My intention is for this collection of support structures to serve as a starting point for grad students who find themselves suffering from an autoimmune disease or similar condition. With the right support and a lot of patience you can make it through.

Photo Credit to Charlotte May via Pexels

Scuba Diving as an Aspie

Scuba diving can be a wonderful, potentially life-altering experience. For many people, descending beneath the waves of the ocean, or even into a lake or quarry, can feel like exploring an alien planet filled with unfamiliar forms of life. While humans evolved to live in terrestrial environments, about 71% of the Earth is covered with water and about 97% of that is ocean. Further, all life on Earth is thought to have originated in an aquatic environment. One could then argue that the oceans, with their variety of distinct ecosystems, represent the primary habitat on Earth. This, I feel, drives an intense curiosity about the undersea world for many of us.

Recreational scuba diving is a fast-growing sport and is by no means restricted to those with related jobs, but scuba can also be used in a range of natural science careers (both marine and freshwater). There are many scientists whose fieldwork includes underwater surveys of fish, algae, and invertebrates, collecting samples at depth, or even conducting habitat use, feeding, or reproductive studies while diving. If you are interested in this sort of work, earning scuba certifications while in high school or college can be enormously beneficial.

However, it should be noted that scuba diving is not for everyone, can be quite expensive, and is absolutely not required for a career in marine/aquatic science. The message you take away from this post should not be “I have to spend a lot of money on scuba courses and gear or else I can’t be a marine scientist.” A lot of marine science is done in labs and on computers, rendering scuba training unnecessary. I know many marine scientists who can’t even swim, let alone scuba dive! Even amongst those who are scuba certified, most only dive for fun, not work.

I bring up scuba here because, in addition to being a moderately common tool for marine and freshwater scientists, it can be a unique experience for those on the autism spectrum. In particular, the sensory and organizational aspects of autism and Asperger’s can have massive implications when scuba diving, both positive and negative.

General Therapeutic Effects

There have been anecdotal stories of individuals diagnosed with ASD (DSM IV autism and Asperger’s) experiencing moderate relief from sensory stresses and anxieties while scuba diving for some time. As far as I am aware the only formal study on the subject came out of Midwestern University in about 2014, though this study simply analyzed personal accounts of autistic divers to identify common themes and experiences. Drawing on my experience as an autistic divemaster, I can confirm that many positive aspects of the scuba experience can (sometimes, in some people) impact common types of sensory issues. Neurotypical scuba students frequently report these benefits as well, though they may be more striking for autistic divers.

Many autistic people derive comfort from weighted blankets or similarly thick clothing; this is thought to be the result of increased pressure on the body. While I can’t explain why this works physiologically or psychologically, it is a widespread experience. When scuba diving, the ambient pressure on your body increases rapidly due to the weight of the water above you. That pressure is double what you experience at sea level after descending only 10 meters (33 feet) and increases linearly with depth. Autistic divers have commonly reported that this increased pressure, in addition to the squeeze of their exposure suit, provides a comparable effect to that of a weighted blanket.

For some people on the spectrum oversensitivity to certain stimuli can cause headaches, anxiety, and stress. Because diving narrows your perception through impairment of most senses, it can significantly reduce sensory distractions. When diving, your vision is narrowed by your mask, smell and taste are severely limited, hearing is minimal, and tactile reception can be reduced with gloves. Some have described this as freeing, simultaneously relieving the anxiety and headaches associated with overstimulation and improving focus. I cannot speak to the medical validity of this, though it is an interesting possibility.

Finally, dive training can offer a sense of confidence and accomplishment to anyone willing to put in the time. This is frequently cited as a major benefit of recreational dive training for neurotypicals, and I feel it extends to the autistic community. Particularly for those of us who may not have a lot of agency and control in other areas of our lives, building confidence through dive training and execution can be intensely fulfilling.

Potential Aspie Advantages

In some ways, Aspies are built for scuba diving. Virtually all scuba training makes use of extensive lists, acronyms, and mnemonic devices. Aspies are commonly drawn to this type of mental organization, and many of us already rely heavily on lists and categories to manage our daily lives. Personally, scuba training felt almost familiar because of how it was structured. Neurotypicals face a potentially high barrier to entry during their initial scuba training because they must adapt their existing mental organization system to keep track of gear, conduct equipment and buddy checks, and establish and remember dive plans. For many Aspies, this manner of organization is more naturally grasped.

Humans (except for fluent sign-language speakers) lose our primary means of communication when diving. To compensate for this, the dive community has developed a set of hand signals that allow for limited communication at depth. Although there are small variations in the use of niche signals and the overall syntax when multiple signals are used in sequence, the most important signals are considered universal. However, because these signals are so simple and so few, divers need to be deliberate when communicating. This system will appeal to some Aspies. Because it reduces communication to only the most necessary messages, normalizes the practice of “speaking” methodically, and eliminates confounding factors like tone of voice and facial expression, some Aspie divers I know find this “language” preferable to speaking on land. Aspies may indeed find they are well-suited to this form of communication and therefore better prepared to become divers.

For Aspies, plans and expectations that are thorough, clear, and explicit are frequently a source of comfort. Due to safety concerns and limited communication at depth this is always the case when diving. Every dive training course will emphasize the importance of making thorough plans for each dive and clearly articulating any goals or expectations. Divers are also taught to stick to the plan, erring only on the side of safety. As the saying goes, “Plan your dive and dive your plan.” I imagine many Aspies will find this culture of safety and explicit communication comforting, as I have.

Potential Aspie Disadvantages

I think I’ve made a fair case so far for why Aspies tend to make good divers, but there are some ways in which we may be naturally unprepared. The biggest of these relates to the diving medical requirements and associated sensory issues.

While I am not aware of any proven correlations between autism and other specific medical conditions, the sensory under- and over-stimulation common amongst those on the spectrum can be a problem when diving, depending on how it manifests. For example, the rapid pressure changes involved in diving affect gas pockets in the body including the lungs, inner ears, and sinuses. Divers must compensate for these changes by breathing full, calm breaths and exhaling while ascending (lungs), equalizing/clearing their ears, often manually (inner ears and sinuses), and always ascending slowly (both). Although I have never witnessed autism-related sensory issues prevent a would-be diver from properly performing these tasks, someone prone to over-stimulation in their sinuses, for example, would almost certainly require extra help during training to get used to it. Similar sensory issues could arise with breathing compressed air, which is necessarily cold and dry and can be uncomfortable in the mouth and throat.

Another skill that may present some difficulty to autistic divers with sensory issues is the conscious regulation of breathing rhythm and overcoming the instinct to hold one’s breath. As mentioned above, lungs are fundamentally gas pockets that will expand and contract as the ambient pressure changes. This can cause a serious lung over-expansion injury if a diver, for example, holds their breath and swims upward. Slight changes in lung volume (inhaling and exhaling) will also influence a diver’s buoyancy, allowing for fine mobility control. For these reasons, dive training courses emphasize conscious control of breathing and expect students to maintain that control throughout every dive. I know one individual on the spectrum who struggles with sensory over-stimulation when she starts to think about her breathing. While I imagine this might be a rare issue, it would be a significant problem when undertaking dive training.

I have known some Aspies for whom anxiety is a defining facet of life and who are prone to panic easily. If this sounds like you, I recommend that you approach diving with caution. While scuba diving can be a tool to regulate anxiety and panic through comfortingly thorough training, clear communication, and reduction of sensory over-stimulation, this regulation must be learned early in the training process. The best advice I can give to someone in this situation is to share their concerns with their instructor clearly, and to accept that extended training time in the pool may be necessary. Anxiety does not preclude you from becoming a successful diver but pretending that it isn’t part of the equation might put you in a dangerous situation.

Finally, diving is a social sport. While Aspies generally don’t experience speech delays in childhood, many of us have to work very hard to figure out the unwritten social rules that neurotypicals grasp quickly. Different Aspies do this at different rates during different stages of their lives, and some will probably never understand their neurotypical peers. I don’t personally see this as a failure or shortcoming, but it does create practical issues when entering a highly social activity that is, like most things, dominated by neurotypicals. There is no magic advice that will make your dive peers like or understand you. All you can do is keep a good attitude and open mind, give your best effort, and communicate genuinely. If possible, it may also be best to dive with a friend or family member who knows you well and will not be put off if a social rule is broken.

Getting Started—Finding a Healthy Dive Culture

While the vast majority of dive operations are shining examples of safety, there are plenty of less-than-reputable businesses that cut corners either out of laziness or to minimize expenses. Once you have engaged with such a business, they will frequently use peer-pressure (yes, really) to get you to finish your training while overlooking equipment safety issues or rushed instruction. All prospective divers should make sure that they are pursuing training through a reputable organization, especially those on the spectrum who anticipate needing extra time or assistance.

You’ll want to start by looking for an open water or introductory scuba course (these are common terms for a “basic” recreational scuba certification) offered by an internationally recognized dive training agency. These include the Professional Association of Diving Instructors (PADI), the National Association of Underwater Instructors (NAUI), Scuba Schools International (SSI), Scuba Diving International (SDI), the British Sub Aqua Club (BSAC), the Confédération Mondiale des Activités Subaquatiques (CMAS, also called the World Underwater Federation), the National Academy of Scuba Educators (NASE), and others.

Visit a dive shop, school, or training center associated with the agency of your choice and inquire about the dive certification process. Voice any questions or concerns you may have, including relevant sensory issues or significant anxieties. This initial conversation can tell you a lot about how a dive operation is run and, when coupled with online reviews, will form the basis of your decision. Learning to dive requires honesty and vulnerability, particularly if you have sensory/autism related concerns. That can be scary! You need to decide whether you feel comfortable being honest and vulnerable while working with this operation’s staff. All the effort will pay off when you receive patience and individual attention during training, and with a certification card that will be recognized by dive operators around the world. If you decide to pursue advanced dive training or even a career as a dive professional, you can rely on this familiar and trusted operation for guidance.

Getting Started—Adaptive Diving

The world of adaptive scuba training is growing rapidly, and new opportunities are popping up all over. This type of training was originally conceived for paraplegic divers, but it has expanded to cover a range of physical and mental conditions including most forms of autism. While the process I’ve outlined above may work for many Aspies who are capable of “passing” as neurotypical and/or who have relatively mild sensory concerns, people (Aspie or otherwise) elsewhere on the autism spectrum may benefit from adaptive training. This includes anyone who struggles with basic verbal communication or learning in a traditional academic setting, has severe sensory issues, or who does not function autonomously to the degree a diver normally would.

If you fall into this second category and want to learn to dive, your best bet (in the U.S., at least) is to find a shop with an instructor certified by the Handicapped Scuba Association (HSA). This sort of thing will usually be emphasized on a store’s website. The HSA site (hsascuba.com) is supposed to help you find instructors, divemasters, and dive buddies who are HSA certified, although at time of writing each of these links causes the site to crash. I recommend starting with an internet search for “HSA Instructor” followed by your area.

HSA instructors are scuba instructors who have undergone additional training and are qualified to teach students with a range of physical and mental disabilities and conditions. Depending on the dive operation and your unique situation you may be placed into a class with neurotypical students and given the extra attention and support you need, or you may get entirely private lessons. If you have a friend or family member who dives and would like to dive with you, the HSA offers a Dive Buddy Course (DBC). This course prepares divers who are already certified to partner with paraplegic, quadriplegic, amputee, and blind buddies. I have been told that the most recent version of the DBC includes information about diving and the autism spectrum, though I can’t personally confirm this.

For me, scuba diving is as much about focusing my mind on a single task as it is about exploring. It grounds me, calms me, and keeps me active. While I can’t guarantee that diving will have these effects for all Aspies, I encourage you to try it if you are at all interested.

Your best source of advice about diving in the context of a science career will be faculty mentors engaged in diving research, so seek them out and talk to them. Lastly, remember that diving is far from required in the aquatic sciences; it’s just one of many tools that can be used to study marine or freshwater systems. Whether or not you decide to (or are able to) take up scuba diving, you are welcome in the natural sciences.

I am not a medical professional; the advice and views expressed here do not constitute formal medical advice. Further, these writings are my own and do not necessarily represent the official positions of any dive training or safety agencies with which I am affiliated, including the Professional Association of Diving Instructors (PADI), Scuba Schools International (SSI), and Divers Alert Network (DAN), or that of any dive operations for which I have worked.

Fieldwork as an Aspie

Fieldwork is all but certain to play a part in your career as a natural scientist. Even if you plan on exclusively analyzing data, working in a lab, or teaching, your education will likely include a field component somewhere along the line. Working in the field can create challenging situations for Aspies that aren’t an issue in other types of work. Whether you are taking a course at a field station, occasionally collecting samples for your research, or working a full-time field job, you should be aware of and prepared to meet these challenges.

Perhaps the most obvious issue with fieldwork is socialization. Not only will the number of people with whom you can regularly interact decrease, but you will probably be spending long periods of time in their company. For some work you will have to spend weeks at a time working with only one person. As an Aspie this can be a terrifying prospect. What if interacting with this person drains you too much to work? How do you cope if you don’t get along with this person? How do you move from seeing a person on and off during the workday to spending the full day working exclusively with them? Socially exhausting situations like this are unfortunate, but they may be unavoidable depending on your line of work.

My first full-time field job is a good example of this struggle. After graduating from college I spent a summer working as an electrofishing technician for a state agency. My unit would send out 2-5 person teams on 4-day data collection trips every week, weather allowing. This is what the job demanded. My first time working with a new person was always socially intimidating, especially if it would only be the two of us that week. Working ten plus hour days together, eating dinner together, then doing that three more times can get exhausting even for neurotypicals, so you can understand how an Aspie might be extremely stressed.

Your first line of defense concerning fieldwork is deciding whether a position is right for you. The last thing I want to do is discourage Aspies from pursuing fieldwork, but you should know that the nature of the job often requires situations like the one I’ve just described. It is important that you read up on a job before applying. You need to have a good understanding of what that position will expect of you, and what you need in order work well. Don’t despair if this limits you, though, because there are plenty of jobs that can give you field experience without the socially intimidating conditions. You just need to sort out which ones are which.

When in the field, try to identify and retreat to “your space” whenever you can and feel you need to. This can be your hotel room or cabin if you have one, a walk away from the campsite, etc. It won’t always be possible to do this, but there will be opportunities for you to step away from your partner/group. You can explain that, when appropriate, you need a little alone time. This is not an unreasonable request, and your teammates will understand. Even if the whole group eats dinner together, you are not required to eat with them. Neurotypicals may consider you rude for disappearing without explanation, but most will understand so long as you make it clear that you need time to unwind, and that it isn’t personal.

Another helpful strategy is to familiarize yourself with the expedition details beforehand. If you are preparing for a marine research cruise, there may be an opportunity to do a walkthrough of the ship before departure day. This will allow you to start acclimating to the environment gradually, potentially striking that from your list of stressors. If you will be spending some time at a field station, you are likely to find online photos, videos, and maps of the station that can similarly help. For short-term expeditions, I recommend you participate in the planning process as much as possible. Provided you are not in charge of the trip, hearing those who are discuss equipment and methods that will be used, as well as the team’s goals and priorities will give you a better sense of what to expect. This will also give you a chance to ask questions.

Finally, know that it is ok to discuss your needs and apprehensions with your partner or teammates. If you feel comfortable having an open conversation, your team’s understanding can go a long way toward alleviating your social stresses. In my experience, scientists are generally aware of Asperger’s Syndrome and tend to be supportive of their colleagues on the spectrum. However, you should not feel pressured to share your diagnosis and personal struggles with anyone. Only do this once you trust your teammates and are comfortable enough to be open with them.

I hope these strategies for coping with the challenges of conducting fieldwork as an Aspie are as helpful to you as they have been to me. This post will be updated as I continue my career, encounter new challenges, and develop new ways to meet them. If you have your own related challenges or advice that you would like to share, feel free to reach out. I am always happy to learn from the experiences of others.

I would like to clarify that the above personal anecdote is in no way a criticism of or complaint about any of my coworkers or the agency in general. The people I met in this job were all wonderful, fascinating people, and I did enjoy my time there. I simply want to characterize the fears and frustrations I experienced as an Aspie in this situation that my neurotypical coworkers likely did not.