The Importance of Lived Experience

Hearing first-hand how sharing real-life perspectives, strategies, and resources can change the lives of autistic people and their families. 

Written by Kelli Yeagley, OCALI

Several years have passed since I first discovered that I have an autistic neurology. Like many autistic women, my path did not begin with a diagnosis in childhood, though I always knew that I had what my family and now-husband once called “sensitivities”. Growing up in an under-resourced and underserved community in the late 1980s – 90s, information about autism, disability, and mental health wasn’t widely available. Any challenges that I had ever experienced were generally attributed to being born two-months premature, so we did what many people choose to do — ignore the little things and adapt to others.

Because clothing made for premies was (and still can be) prohibitively expensive for many families, I spent the first few months of my life dressed in dolls clothes. My family became used to making sure buttons were sewn tight and cutting out itchy tags; after all, those outfits weren’t originally designed for wiggly infants. Diapers, detergents, and soaps were purchased with great care as they learned early on that I couldn’t tolerate the slightest hint of fragrance (something doctors advised I would eventually grow out of but never did).

Once I was big enough to fit into the clothes worn by children my age, my wardrobe preferences didn’t change much. I tended to prefer soft and stretchy —  sometimes worn inside out if I could get away with it — anything to avoid what felt like an endless attack on my skin. If I had my way, I would have spent my days floating in a swimming pool, surrounded by glittering sea life. My family thought it was because I had developed a keen interest in all things mermaids and marine biology, but it was also because being in the water was the only place I ever felt my body truly relax. It was something I could point to, even though I didn’t have the words to describe what was happening, and say this makes me feel better.

As far as my parents were concerned, only one or two things ever warranted visiting a doctor. I was lucky; though I had been born without depth perception and had always been extraordinarily clumsy, no broken bones or other major physical injury had ever come to pass (outside of a brief stint as a backyard stunt bike star and ending up in dental surgery). It seemed their biggest concerns were that I often spoke too loudly and that I always complained about my stomach hurting. Since multiple hearing tests had come back within normal range, my life quickly became a series of “shh’s” and “you need to use your inside voice”. I couldn’t distinguish between what I perceived my voice to be and what everyone else called an “inside voice”, so it became increasingly difficult to participate in conversations without becoming consumed by intense anxiety. Though I had always experienced unexplained stomach pain from a young age, it was when my stomachaches appeared linked to anxiety that my parents became concerned. Doctors who treated me dismissed them as the result of my food preferences, lots of salty and sweet, with very little else (my favorites were chips and ice cream).

With no clear solutions to my parents’ concerns and my associated anxiety, I responded in the only way I knew how – by either blending into the background or acting as the performer, deliberately putting myself in the center of attention for attention’s sake. As the performer, I observed, I mimicked, I rehearsed facial expressions, conversations, and lines from my favorite movies in front of the mirror in my bedroom. I tried on different personalities like elaborate costumes to see which best fit each situation. I tried too hard and often came off as awkward or overly rehearsed, but practice seemed like the only way to get better, so I tried harder to make everything seem more fluid. Eventually things did appear more natural but acting like everyone else was exhausting and I needed a lot of down time. I spent hours alone in my room. Many autistic people describe this experience as wearing “masks”.

When I wasn’t home from school sick with a stomachache, I showed up at school with one. But generally the days seems to go fine…at least to others. I was the sort of kid who tried to keep out of sight. I was quiet and didn’t have many friends. When I did talk, I wanted to talk to the more interesting people — the teachers. It seemed as if they found me interesting because I enjoyed creating elaborate stories in my head and playing any piano I could find – even if it was the one I drew on notebook paper. I became fixated on things like being on the honor roll and perfect attendance. Though perfect attendance didn’t last all that long, I knew I liked the idea of goals. Working toward something. Routine. Perfection. And academics came easily (except for math), so I stayed off of most people’s radar.

Even the daily challenges I faced seemed to go unnoticed by teachers and classmates. Hate gym class because it’s too loud and no one ever follows the rules? Help out in the office! Loathe recess because all of the kids are running around screaming uncontrollably? Ask for extra homework! Finished with homework? Ask to borrow a book from a teacher’s personal collection! I had multiple exit strategies for almost every activity. Without an understanding of how and why I was experiencing things differently, I told myself that anything that seemed “off” was probably nothing. Besides, any time I mentioned anything, people would brush it off and say something like “that’s weird” and go about their day.

I only started to reexamine things after I graduated from high school and began to experience escalating panic attacks. Trying to juggle graduate school, work, and a new marriage, it took a few years to finally make the decision to visit my university’s counseling office. I kept telling myself that if I only tried a little harder, things would fall into place. Every conversation, every grocery trip, every project, or every time I had to find my way home unassisted felt like I was walking into the biggest exam of my life — totally unprepared. Did I really need help or was I just doing this adult thing all wrong? Maybe I missed that day in class…

Knowing that I needed support and having to navigate a complex and often confusing system was one of the scariest experiences of my life. It was not a quick or easy process. After being referred by the counselor to a psychiatrist for what I thought was typical twenty-something anxiety, an assessment eventually lead me to a diagnosis of Bipolar Disorder II and down the long and winding road of medication trial and error. Having worked professionally with mental health teams, I knew this process was typical; I wasn’t really concerned. When the first medication did not have an effect, we decided to move to a different prescription. As the new medication began to have serious adverse health effects with no apparent benefits, I began to question my BPD II diagnosis. Over several months, I had a series of conversations with my doctor which led to an autism assessment and ultimately a formal diagnosis. I stepped down and eventually stopped all of my medication and continued seeing my counselor as needed.

Though going through that process taught me to self advocate, it was painfully difficult. I’m still recovering from the effects of the unnecessary medication, and I’ve struggled not to blame myself for not knowing more sooner, not recognizing traits within myself, and not knowing how better to advocate when I needed more support. I’ve also found myself asking: Where were the resources and support for families like mine whose child had all of these “sensitivities”? Why didn’t the other adults in my life – trusted teachers and doctors – know what to look for or how to support me and my family? What information, training, strategies would have helped all of us throughout this journey? What about children and adults with and without intellectual disability, complex health challenges, or additional access needs? Barriers like access to affordable and accessible health care, high-quality education, and diagnostic biases often prevent people from getting an autism diagnosis or even knowing if it is something they would like to pursue.

With all these questions in mind, I looked for answers where I had always been most comfortable — books and the internet. But to my surprise, what I was seeking couldn’t be found in a textbook or research paper. While statistics and figures were great, what was most helpful for the day-to-day came from connecting with people with lived experience; it came from sitting back, being quiet, and listening. Really listening. It was life changing to find out that my family and I are not alone in our experiences and  that there are diverse and experienced communities of people with similar neurodivergences and other disabilities and chronic health conditions. I now had people who really saw me for who I am. As I continued to learn more about what it meant to better care for myself as an autistic adult, people kindly shared their own experiences so that I might adapt strategies that I found useful and I shared those I found most helpful.

Personally and professionally, I have been fortunate to share parts of my story with others. Currently, I focus much of my work on developing resources, tools, and trainings for autistic people, our families, and those who work along side us in professional or other supportive roles. As a staff member at OCALI, I contributed to an innovative online learning tool – ASD Strategies in Action. It is a video-based training series about autism spectrum disorder, based on evidence-based strategies with strategies for different stages of life and across settings. It combines research with real-life experiences and features the perspectives of autistic people, our families, as well as those of the educators and professionals who have worked with us along the way.

After years of navigating doctors offices, hospitals, and other medical facilities, I have come to understand important role that medical professionals play in each of our lives. Our physical, mental, and emotional health and wellbeing are so deeply interconnected. It is my hope that doctors, nurses, and related professionals use ASD Strategies in Action as one of the resources that you refer to families, schools, and neighborhood communities to create a welcoming and informative space around the topic of autism. As a possible training tool for your own practices, it can also support your ongoing efforts to to become more inclusive, accessible, and effective in your support of autistic and disabled people and our families as you continue your invaluable work.

Author’s Note: A statement on identity-first vs. person-first language: The author chooses to use identity first language as in “autistic person” or “disabled person” vs. “person with autism”. For more on this please visit http://autisticadvocacy.org/home/about-asan/identity-first-language/

ASD Strategies in Action are divided into four courses: Many Faces of Autism, Toddler & Preschool Age, School Age, and Transition Age.  All of the courses are available at no cost for all Ohioans, and the age-based coursework is available via subscription for those who reside outside of Ohio. ASD Strategies in Action was developed by OCALI (www.ocali.org) in consultation with a blue-ribbon panel of internationally-recognized experts.  The project was funded under the leadership of the Ohio Department of Developmental Disabilities in collaboration with the Ohio Department of Education and the Governor’s Office of Health Transformation.

For more information, you can visit www.autismcertificationcenter.org. Families should be directed to www.autismstrategies.org.