My Path to Self-Discovery
As a brand new mama who also happened to be a physician who takes care of babies, I thought I knew what I was doing. My baby had other ideas. She made it clear, in no uncertain terms, that everything I’d learned in medical school was painfully inadequate for taking care of her. The world was too loud, too bright, too fast – and she let us know, in no uncertain terms, that the environment was a mismatch for her needs and was interfering with her becoming her best self.
As I devoted my life to learning everything I could about how to be the best mama possible for my sweet little love, I opened up to a whole new world of things I never learned about in medical school – sensory processing, motor learning, alternative augmentative communication. I also began the process of unlearning the deficit-based paradigm that I had been indoctrinated into by my medical education. I read Uniquely Human, which is still hands-down my favorite book of all time. I immersed myself in the wisdom of autistic adults, consuming every book, blog, or vlog I could get my hands on. And two years to the day from my child’s autism diagnosis, I received my own.
Like many late-identified autistic adults, I received my autism diagnosis in the context of autistic burnout – that is, a chronic state of profound depletion of internal resources. In the early days of the COVID era, I was caring for sick patients in our small community hospital (working 24/7 for a week at a time), homeschooling a then-3 year old, and experiencing the most prolonged period of chaos, sleep deprivation, and uncertainty that I’d ever known. As my executive functioning imploded, I lost the ability to mask. It was only through painful dysregulation that I had the opportunity to discover my true self, rewrite the narrative of my entire life, and discover my life’s purpose.
Shifting the Narrative of Autism
Shortly after receiving my autism diagnosis, I learned that autistic adults die at an average age of 36-54 – with leading causes being premature cardiovascular disease and suicide. I was 37. I flipped my lid, quit my job, and decided that I needed to do something to shift the community conversation on neurodiversity and inclusion, so that my then 4-year-old could grow up in a world where autistic people do not die in the prime of our lives. And that’s the story of how my nonprofit organization, All Brains Belong VT, was born.
Launched in November 2021, All Brains Belong provides neurodiversity-affirming healthcare, education, and social connection opportunities for kids and adults. Autistic and otherwise neurodivergent people spend our lives in a world that was not designed with us in mind. When our access needs to fully participate in school or work or social relationships are not met, this has a profoundly negative impact on our health. So in order to improve the health of autistic people, I wanted to build a model that could impact life outside of the exam room – to shift the way that the broader community frames accessibility. We use universal design principles to demonstrate to the broader community that there’s no one right way to do anything – no one right way to think, learn, communicate, or play. There’s no one right way to be a human being.
Neurocultural Competency in Healthcare
When I train healthcare professionals about what I like to refer to as “neurocultural competency,” not only do I teach them strategies for overcoming environmental, communication, and system-wide barriers to healthcare access for neurodivergent patients, but I teach them brand new concepts about autistic physiology. Not only do most healthcare professionals receive inadequate / outdated training in what autism is, but there is hardly any training about the co-occurring medical problems that autistic people experience. Even before I learned that I was autistic, I knew about some of these things – hypermobility, dysautonomia, sleep disordered breathing, Long COVID, to name a few – but I didn’t understand the totality of the picture until I launched All Brains Belong. Now that I primarily provide medical care to neurodivergent kids and adults, the patterns jumped right out at me! One of the many strengths of many autistic brains is to be able to zoom out, recognize patterns and systems, and be able to apply those systems consistently. Turns out, 70% of my practice has a pattern of multi-organ system autoimmune conditions – a trend that despite being well-known on social media, is not widely known by primary care providers.
Thanks to a generous grant from the Organization on Autism Research (OAR) and the Autism Intervention Research Network on Physical Health (AIR-P), we are developing a primary care screening tool for autoimmune conditions in autistic patients as well as a companion guide for best practices in medical management. We are carrying out this project as a task force of multidisciplinary clinicians and autistic community members, elevating lived experience as a guiding principle for understanding the challenges of medical management. What makes management challenging? Common treatments for some parts of these conditions can worsen other parts. For example, some medications can worsen blood flow to the brain or interfere with sleep quality or breathing. Misunderstanding and mismanagement of these medical conditions can further contribute to premature death. Too often, the healthcare system fragments each part of the body as a separate entity – whereas in reality, everything is connected to everything. Together with my patients, we are breaking down silos and building a community of learning and healing.
Building a New System
The distinction between healthcare and the rest of life is quite arbitrary, given the wide number of factors that invariably impact health. The “ABB Village,” as we often call it, is a neuroinclusive community where people with all types of brains come together to reimagine what’s possible. In addition to our healthcare programs, we have a range of free community programs open to everyone, everywhere – educational training and social connection opportunities for kids and adults. For everything we do, we offer flexible, multisensory options for engagement and give people freedom and choice to pick what options work best for their brains. We bring people together based on shared interests. We ask people what makes them feel comfortable (and we do those things for them). We ask people what stresses them out (and we don’t do those things!). We help people better understand their access needs, and how to negotiate when their access needs conflict with those of others. Through it all, we work together to bridge the Double Empathy Problem – Dr. Damian Milton’s term to describe the impact of mismatched world views and communication styles. In many ways, I spend most of my day as a neurocultural broker.
Some people wonder why a healthcare organization is doing all these non-medical care things. The thing is, health is more than one’s interactions with healthcare providers. Health is community. We need to be able to show up as our authentic selves at school, at work, at play, and in relationships. I wanted to create a model where we are holistically supporting the inclusion and self-actualization of our community members.
Many, many things need to change in order to improve the health of autistic people. I believe that it is the strength of autistic brains that can zoom out, recognize the failures of systems that are not working, and reimagine what’s possible – for ourselves, for our children, and for the broader autistic community.
Dr. Mel Houser (she/they) is an autistic family physician with a clinical focus on providing primary care for neurodivergent patients across the lifespan. She is the Founder and Executive Director of All Brains Belong VT, a nonprofit 501(c)(3) community health organization in Montpelier, Vermont that provides neurodiversity-affirming healthcare, education, and social connection opportunities for kids and adults. At age 37, Dr. Houser was diagnosed as autistic, ADHD, dyspraxic, dyslexic, and dyscalculic. She is also the parent of an autistic 5 year old, who is her guru of so many keys to the universe. Learn more by listening to Dr. Houser’s interview on Uniquely Human: The Podcast.