Embracing Life’s Challenges: The Journey of an Autistic Person with Epilepsy, Autism, and ADHD

Written and Art by Ash Ward

Image Description: A disabled trans male being told He's enough and the person saying that is making him feel important. Surrounded by the disabilities he has, the pain of having them are fading farther away once he hears those words of encouragement.


 Image Description: A disabled trans male being told He’s enough and the person saying that is making him feel important. Surrounded by the disabilities he has, the pain of having them are fading farther away once he hears those words of encouragement.

 Living with disabilities is a unique journey that shapes one’s perspective and invites a myriad of experiences. Today, I tell you my life story of navigating through the complexities of autism, epilepsy, and ADHD. It was a long process, and I surely struggled, but it became harder and the road to where I am today was, indeed, bumpy.

 • Discovering Differences

From an early age, I began to notice my innate differences from my peers. My initial encounters with autism manifested in distinct communication and interaction patterns. Socializing became an intricate dance that required both patience and understanding from those around me. Despite these challenges, I found solace in my burgeoning creativity and unique perspectives on the world.

 • Epilepsy’s Unpredicted Twists

As life unfolded, epilepsy unexpectedly entered the stage, adding another layer to my journey. Seizures brought forth uncertainty and fear, each episode altering their path momentarily. However, with resilience and support, I discovered ways to manage my condition, embracing life’s unpredictability with open arms. Medication played a huge part, but overcoming my fear helped.

 • The Dual Nature of ADHD

ADHD joined the ensemble, introducing a whirlwind of hyperactivity, impulsiveness, and difficulty concentrating. It challenged my ability to stay on task, especially in school, and sometimes made me feel restless in an environment designed for neurotypical individuals. Nevertheless, their ADHD became a catalyst for innovation, enabling me to approach my problems from unique angles and harness my boundless energy for creative pursuits.

 •The Obstacles

Life was far from smooth sailing, as societal stigmas and misconceptions surrounding disabilities often stood in the way of my progress. I faced educational barriers and workplace discrimination various points in their life. However, with determination, advocacy, and the invaluable support of friends, family, and mentors (staff in my previous and current homing situations), I overcame these obstacles.

 • Finding a Voice

In my quest for self-acceptance and resilience, I discovered an artistic outlet that allowed me to share their experiences. With writing, Drawing, or any creative medium, I was able to express my unique perspective on the world, enlightening society on the true nature of disabilities and eroding the boundaries between neurodiversity and the mainstream.

 • Embracing Neurodiversity

The journey towards self-acceptance led me to embrace the concept of neurodiversity. I became passionate advocates, fostering inclusivity and understanding within their communities. My experiences with epilepsy, autism, and ADHD gave me invaluable insights into the diverse tapestry of human existence and the beauty that lies within the differences we all possess.

 ABOUT THE AUTHOR: Ash Ward

I am Ash Ward. My pronouns are He/they and I am 23 years old. I enjoy drawing and listening to music. I like helping others and volunteering at animal shelters!

 

Image Description:  Trans man with pink fluffy hair, hazel eyes and an anime shirt on Trans man with pink fluffy hair, hazel eyes and an anime shirt on


Image Description: Trans man with pink fluffy hair, hazel eyes and an anime shirt on Trans man with pink fluffy hair, hazel eyes and an anime shirt on

The Importance of Transportation for Disabled Peopl.

Ryan Robinson

Meanwhile, on the east side of town, an elderly man named Sam whispers, “I understand,” into the phone as a paratransit dispatcher explains why he’ll be late to dialysis due to issues with driver staffing. Sam doesn’t understand though and he can’t understand why people would play with his life.

       It’s 7:30 a.m. on November 1st in Indianapolis. The driveway outside Henry’s apartment complex where he waits with his guide dog Stanley is full of discarded candy wrappers that are wet from last night’s rain. Henry and Stanley have been waiting outside for an hour. Henry’s screen reader announces, “Your ride share has been cancelled, for the third time that morning as Stanley pulls hard at his harness, agitated from the wait. The  visually impaired executive at the place where Henry has just been hired advised prospective workers to avoid public buses when possible to “project an aura of dependability.” If Henry hadn’t heeded the executive’s advice, Stanley could be with him inside the warm office building right now.

On the westside,  a woman in a motorized wheelchair screams,“I don’t have $30,000 for a van,” at her boss who has just fired her for habitual lateness and indicated she might be able to keep her job if she could just get a lift-equipped vehicle and driver.

 

These scenarios are fictional, but these scenarios happen all the time. The nation’s car-centric mentality and infrastructure, coupled with anti-transit policies at the state and federal levels, have led to public transit agencies that are drastically underfunded, under-staffed, and unsupported. Many cities were drastically expanded in an outward direction after World War II and haven’t been updated since. This has largely meant very wide streets and few, if any sidewalks for pedestrians to get where they need to go. All across America, people with physical disabilities are dismissed from their jobs and late to critical medical appointments every day due to lack of adequate transportation options. The ADA is, in theory, is supposed to protect disabled people from this type of systemic discrimination, but it is clearly still there.

Even though public buses are now required to be accessible for people in wheelchairs, there are often equipment malfunctions, ill-trained drivers, and the afore-mentioned public infrastructure issues that make getting to and from bus stops impossible in some cases. This is where the paratransit system, which is door to door service, is supposed to come in and fill in those gaps. However, most paratransit systems receive their funding the same way as the public bus system, so they face the same short-comings of staffing, as well as route structures that either cause disabled people to ride around on the paratransit buses for hours or not get picked up at all. For example, IndyGo Access, the paratransit system in Indianapolis, reported an on-time performance rating of 74% in July, 2023, according to the August 2023 board report. To the uninitiated, that percentage doesn’t sound too bad, but keep in mind that that’s 26% of people who didn’t make it to their jobs, appointments, and leisure activities. This service is imperative because Uber and Lyft are not possible for everyone. Most cities do not have wheelchair accessible vehicles in their ride-share fleets, and many drivers are hostile towards service animals, often canceling rides without explanation.  This type of discrimination is expressly forbidden in the driver code of conduct, but it still often happens. This is what happened to Henry in our example above.

 

So, the question is, what can we do about this problem? The answer is simple. Public transit needs more funding and more backing on both the state and federal levels. Public transit needs to be seen as a vital part of our cities, not just a service to the poor and disadvantaged. As long as it is seen as a service to the poor and not an important part of our infrastructure, funding for these vital services will continue to fall through the cracks and we will continue to observe the status quo. Our cities need to allocate money and resources to upgrading infrastructure such as sidewalks, curb ramps, and accessible public bus stops, so that more people can use the regular buses and take some of the load off of the over-burdened paratransit systems. There need to be more micro-transit projects started in larger cities, such as accessible shuttles that will take people from outlying areas and drop them off at public bus stops, again making it so that more people can make use of the regular transit system instead of specialized vehicles coming directly to their homes. These are just a few starting points, as there is such a very long way to go to get transportation for disabled people right in this country. The most important thing to do, I believe, is try to get people in office who see these issues as important and worth their attention.

Many people think that it just doesn’t affect them, but it could someday be your mother in that wheelchair waiting in the cold for a bus that will never come, or your daughter who can no longer get a ride in a Lyft because she decided to partner with a dog guide. And even if we were to never interact with a disabled person in our day-to-day lives, we are all going to get old someday, and need a little more help than we do now. Let’s try to build a world where everyone has ready access to enjoy the fullness of their communities.

ABOUT THE AUTHOR: Ryne Robinson

 

My name is Ryne Robinson, and I currently reside in Indianapolis, Indiana. I was born blind due to a genetic eye condition called Leber Congenital Amaurosis. My younger sister shares this condition and is also blind. I attended the Indiana School for the Blind and Visually Impaired from preschool through 12th grade. During this time, I participated in many extracurricular activities including track and field, swimming, and the forensics (speech) team, as well as playing the saxophone in the high school band. During my time at Ball State University, where I attended college, I met my wife, Stacye, who uses a power wheelchair due to cerebral palsy. Life took us in different directions at the time and we reconnected on social media years later, marrying in 2014 and subsequently moving to Indianapolis later that year. We use the city’s public busing system to get around, and for the most part it serves us well. However, there are gaps in coverage as well as service infrequencies that make it challenging to use at times, so I am an advocate for better regional transit for disabled people. We all deserve to get to our jobs, appointments, and recreational activities in a timely and dignified way.

Ryne Robinson
My name is Ryne Robinson, and I currently reside in Indianapolis, Indiana. I was born blind due to a genetic eye condition called Leber Congenital Amaurosis.

Masking Pains

G. Rice


 Image Description: digital drawing of a cartoonish person standing in a grey and plain landscape, looking up at the viewer with a hand extended forward, offering a hand shake. The person is wearing a polo shirt and long pants along with a mask showing a smiling face, all the same color as the background. The person is vibrant blue, their arms, hair, and exhausted eyes visible.

 

“Masking Pains” is about the difficulty in trying to get employment and housing when you’re forced to hide your symptoms as best you can in interviewing processes.

 

ABOUT THE AUTHOR: G. Rice

 

I’m 23 years old and have been drawing digitally for around a decade now. I started drawing regularly after discovering anime at 12 but my current art and writing is more inspired by the humour and surrealism of the 90s and 00s cartoons I grew up on. I’m a very big fan of horror in multiple mediums (games, art, writing, movies, etc.) and am part of goth, punk, and metal head subcultures which have influenced the style and content of my art.

Ableism in Public Health Discourse: What is the Effect?

By: Gwen Strickland, MPH

I went to a conference recently and witnessed a very ableist presentation about lead poisoning in children. The researchers were well-meaning. They looked at how lead poisoning altered the development of the human brain and body. The researchers found that children exposed to higher concentrations of lead had higher rates of ADHD and developmental delays as they got older.  Over the course of the rest of this presentation, the public health professional was less well-meaning. The main presenter, who had a master’s degree in public health, took a very specific angle in how she approached the prevention of lead poisoning in children. She consistently used scare tactics throughout that were reminiscent of Autism Speaks advertisements. She highlighted the behavior issues in children who had been exposed to lead and talked about how greatly this disrupted families. She started her presentation/slides with a story about a boy in South Bend who “suddenly, one day” stopped developing and it took another year after that to determine he had lead poisoning. His developmental delays, she said, lead to their family falling apart and losing their house. That this “was the reality” for children and families affected by lead. She seemed confident that lead was “causing” ADHD and autism in her healthy community. If you replaced any of the times she said “lead” with “vaccines,” she would have been called an anti-vaxxer. This speech was not, in the end, about lead. It was about finding something else to target to eradicate “problem children.” It was “I did not sign up for a child with disabilities” and lead was the scapegoat.

Later it was confirmed the effect that this had had. Someone asked what to do if they had a child with ADHD or autism and if it was lead that caused it. The researchers said “there is no way to determine that” but the other lady was clear that lead could be behind it and to test their child immediately. She was not a scientist and not able to give that sort of correlation/causation statement. Everyone in the audience left with the message that lead could cause ADHD and autism and that we could erase “problem behaviors” from those by addressing lead poisoning. I heard so many people in the hallway talking about how they just had to share with everyone they knew about this threat. I felt so stigmatized and like this was just going to increase the erasure and masking of people like me.

I only recently discovered I am autistic and in the past few years have been diagnosed with/put on medication for ADHD. I have been so high masking (hiding and over-compensating for my autistic/ADHD behaviors) my entire life and have had the privilege of being able to maintain that up until this point, but that comes at a cost. I have only just been able to start unpacking how much damage and trauma have occurred as a result of masking for this long and not recognizing what my needs are. Not even knowing that I had different needs, because as far as I knew I was allistic (not having an autistic neurotype) and the reasons that I wasn’t completely fitting into that box were a myriad of character flaws. What caused this? People like this speaker, who punish or medicalize needs like these as “problem behaviors” instead of having compassion and realizing that not all “abnormal” behavior is inherently a problem requiring a fix.

I think researchers and health advocates get the wrong idea. They think we need to be “saved” from our disability, that preventing other people from experiencing disability is the highest priority. The reality is that I don’t need to be “saved” from my autism or ADHD. I need society and our structures to accept me the way I am and meet me where I am rather than creating arbitrary rules that keep me from being able to participate fully. The reason, in large part, that my autistic/ADHD experience is that of disability is that society is not built for the way my brain works. It is also inherently traumatic to live in a world that is not built for you. And it wouldn’t be much of a stretch to make those adjustments and be cognizant that other people may have different neurotypes than you. Everyone loses when we squash the neurodiversity our species is capable of.

Though I struggle a lot with my mental disabilities even outside the constraints of a society not built for me, when I am able to be as fully my authentic self as I can, I am capable of amazing things that my allistic and neurotypical peers are not. Contrary to the pervasive narrative that autistic individuals have no empathy, most autistic people I have come across have an over-abundance of empathy and an innate sense of justice. We are often creative, have great attention to detail, and think about problems outside of the box. Autistic brains tend to do what is called “bottom-up processing.” This means that when we approach a problem or question, we collect as many details and smaller pieces of information about the problem as we can to then form broader conclusions about the problem. Allistics tend to do what is called “top-down processing,” which is the opposite. They approach a problem by finding generalities about the problem, typically based in what they already know, and then move into the details. It is valuable to have both approaches, as they can come out with differing perspectives to be considered for the problem or question.

I will end this narrative by emphasizing that if you’ve met one autistic person, you’ve met one autistic experience. We exist on a spectrum (which looks more like a radar chart, not a line from “more autistic” to “less autistic”) for a reason. We all have our own unique support needs, strengths, and struggles. But we are valuable to the human species just like everyone else and should not be erased or suppressed. If there were a magic button right in front of me that could “cure” my autism or ADHD, I would walk away. (Not everyone with my disabilities may feel this way. I have lower support needs than some and can be relatively high masking when needed, which gives me privilege.) I know my worth and I’m going to keep fighting for it, regardless of what people like this public health professional have to say about it.

Bio

Gwen haas white skin and long brown hair.  They are wearing glasses aaand a dark top.

Gwen (she/they) is the Violence Prevention Program Evaluator for the Indiana Department of Health. They did their undergraduate degree in public health and bioinformatics at Miami University in Ohio and Master of Public Health in epidemiology at Indiana University Purdue University Indianapolis (IUPUI). They are AuDHD (autistic and ADHD) and proudly part of the LGBTQ+ community. Outside of public health work, Gwen likes to engage with her special interests and spend time with her spouse and dog. Together with their spouse, they go to comic conventions and play Dungeons and Dragons. They also occasionally volunteer for a dog rescue.