But, before we get to the questions, let me take a minute to explain how we got here. April of 2021, during the global pandemic, I began a life changing journey. My wife and I had watched a documentary about the comedian Amy Schumer and her husband Chris. During the documentary, Chris receives an Autism Spectrum Disorder diagnosis. The couple discusses the gravity of the diagnosis and how it had gone undetected for so long, but also how it makes so much sense in hindsight. At that point in the documentary, my wife looked over at me and said "I think that's you! I've wondered if you might be on the Autism spectrum for a while now." To say I was blindsided would be an understatement. Over the course of the next 2 years, I slowly remembered and uncovered a bunch of signs that I missed and so did friends and family. Being born in the 70s, Autism wasn't really on the radar of many people. Especially people in a small town in Western Michigan. ADHD was barely on the radar at that time, but there was so much stigma around labels and diagnosing children at the time, that I was unfortunately grouped in with a bunch of other kids who's doctors and parents missed the opportunity of an early diagnosis that could have changed the course of our lives and eliminated a lot of unnecessary struggle and floundering.

After my wife and I finished the documentary that April. I took every single online survey, quiz, questionnaire, etc that I could find on Autism, Aspergers, ASD, etc. I already had an official ADHD diagnosis from a few years prior, so I was really interested in the overlap of the two conditions and how a doctor might differentiate between the two diagnoses in an assessment scenario. After the quizzes all pointed to a potential ASD diagnosis, I started reading every book I could find. (34 books and counting at the time of writing this). I also joined several Facebook groups for late diagnosed Autistics. It was through this self discovery and through reading the experiences of so many other people my age and older, that I started to see all of the similarities. All of the shared struggles, life experiences, incorrect diagnosis, and co-morbidities that many of us shared. 

In May of 2021 I went into hyperfocus mode to find a doctor or therapist that could diagnose adults on the autism spectrum. By June of 2021, I was officially diagnosed with ASD Level 1. As I continued to come to terms with the diagnosis and what it meant for me, I also started to try to come to terms with all of the other diagnoses that I received over the years and with all of the other conditions that I seemed to have "collected" over the years. I won't bore you with all of them, but there is a lot. And I'm not alone. This seems to be a common experience for a lot of adults that weren't diagnosed with ASD until later in life. This slow collection of various diagnoses and conditions had also taken a toll on most everyone that I encountered or read about. It was around this time that I started thinking about a way to better understand our experience. A way to better explain or come to terms with everything that life has dealt us. Sure there were surveys, support groups, instruction manuals, strategies, conferences, retreats, and research on the individual conditions, but I wasn't able to find anything that talked about what it was like to live with SO MANY conditions at the same time. Not just mental or psychological conditions, but also physical, emotional. I can't even begin to guess how many hours I spent searching for something that tried to bring all of these things together. I slowly started to formulate my thoughts and ideas around this idea of encumbrance. Anyone familiar with D&D will have an innate understanding of where I was going with this. It's the basic idea that the more you carry (intentionally or unintentionally), the harder it is to navigate life. The slower you become. The harder it is to move. To live. 

While I was wrestling with this idea I started to aggregate questions that would get to the heart of what someone like me was living with. Questions to uncover all of the things that I carried with me every day. Things I collected over 40+ years of life. One day, someone on one of my ASD Facebook groups shared an article about Allostatic Load. This was the term that I had been missing! There wasn't a ton of research, but there was enough that lead me to the UCLA Laboratory for Stress Assessment and Research, led by George M. Slavich, Ph.D. In January of 2018 he co-published a paper titled 'Assessing Lifetime Stress Exposure Using the Stress and Adversity Inventory for Adults (Adult STRAIN): An Overview and Initial Validation'. This was very close to explaining exactly what I had been thinking through. And they had actually built " the first online system for systematically assessing lifetime stress exposure, called the Stress and Adversity Inventory (STRAIN)". Terrible name in my opinion, but probably makes sense to academics. STRAIN is apparently only available to those in research or academia. I requested access and never heard from anyone. I also discovered that Dr. Slavich started work on a tool that was more suited for the general public, facilitated by trained professionals, called the "Life Stress Test". This might still be under development, as it's hard to find any approved testers in the US other than Dr. Slavich himself or a yoga teacher in Toronto Canada. 

So, I decided to continue to work on this idea of an encumbrance score on my own, with the help of my therapist who happens to specialize in working with folks on the autism spectrum. I read through Dr. Slavich's paper and pulled all of the questions that I believed that they used in the original STRAIN tool. And that's where we are today. I've kept as many of the original STRAIN questions as made sense, and also added some of my own. I developed a scoring algorithm that takes each questions' response into consideration based on a weighting scale. The result is a LOT of questions that try to uncover many of the long term conditions that a lot of adults are burdened with. It then distills all of this information down to a single score. Distilling things down to a single score and seeing the data helps me focus my attention on key areas that I can then address with my therapist or a doctor. And once I made progress on that area, I could retake the survey and see my overall score go down. Ideally I would be able to take notes for that point in time, to document what was done to lower the score. And similarly, if something happened in life that increased the score, such as the death of a family member or other event that negatively impacted my life, I could add that to my score. I started to envision a survey and then visualizing the data as a timeline of my life with a corresponding score that would represent the burden that I was carrying at that time in my life. 

So there you go. That's the story. That's where things are as of June of 2023. I still have more plans for this survey. For example, I'm thinking of ways to incorporate other modules or sets of questions specific to various demographics, age groups, military veterans, trauma doctors and nurses, to bring to light other sources of encumbrance the people live with, that I'm not exposed to. My vision for this is to create a way for people to better understand themselves, their loved ones, their patients, etc. And then to be able to use this information, knowledge, score, to have conversations. To relate to each other. To care for themselves. To empathize with those around them.