My goal here is to give you a reference point, a little context, to attempt to describe my positionality. Perhaps you could say this is my self-trained version of reflexivity. Or you could think of it as the abridged narrative born of a leisurely obsessive mind’s self-study.
If any reader needs to request a disability accommodation for any portion of this blog, please send me a message and let me know.
I am a non-binary autistic adult and a multiple trauma survivor with posttraumatic stress injuries. I seek to be an activist and an advocate. I am a parent to autistic children and a heart warrior-child with complex congenital heart defects. I identify as autistic, neurodivergent, and disabled. I hope to earn the right to call myself an autistic rights and trauma survivor advocate.
I stand firmly against ABA (Applied Behavior Analysis) and coercive therapies.
I consider myself a post-behaviorist.
My perspective has been and continues to be informed by lived experience, trauma studies, the neurodiversity movement, disability rights, human rights and liberties, post-capitalism, psychological anthropology, mindbody studies, and an eclectic blend of non-behaviorist schools of psychology and the psychophysical.
I am a 40-something who was born and raised in the United States in the state of West Virginia. Sitting between Generation X and The Millennials, I don’t feel much a part of either generation. My childhood home’s socio-economics shifted over time from us being lower class to lower middle class and much of my extended family is still impacted by generational poverty. My mother grew up in an Air Force family and was born overseas. My father grew up with 2 working parents who only had GEDs. At the time of my birth, my parents had taken some college classes but neither had a degree. My dad played music nights, and we were blessed to spend a lot of time together as a family in my early years even if we weren’t financially privileged. By age 3, I had two working parents. By age 8, I was part of the latchkey generation. I grew up with an older half-sibling who came to stay for visits but otherwise lived as an only child. I was born in a small Appalachian city and raised primarily in a small, rural town a long distance from any major metro areas. I attended public schools from Kindergarten through 10th grade. Then, thanks to my strong instinctual drive to escape the mounting traumatic experiences in my small town, I won a large scholarship and spent my last two years of high school at a rigorous boarding school. The contributions of multiple family members and a second mortgage on our family home paid for all the scholarship didn’t cover. I went to an in-state liberal arts college thanks to a patchwork of grants and scholarships. And I went to law school on a full scholarship.
I am a lawyer, but I am not currently practicing law. Instead, I am presently a full-time homeschooling parent due to a mix of major privilege and felt necessity related to our concerns about how the schools around us treat autistic children. I intentionally tried to focus my J.D. coursework on disability law, civil and criminal mental health law, and civil liberties. I have a B.A. with majors in psychology and english.
I worked for several years in a group home with adult residents who were disabled by mental health issues, intellectual disability, and/or addiction. I have worked in-home offering support and tutoring to an autistic teen. I briefly worked at a rape crisis and domestic violence shelter as a hotline counselor and shelter support staff. I have also previously volunteered with a child sexual abuse nonprofit, a soup kitchen and kids’ program, a local ACLU, and an arts and music collective.
My last job before law school was working as a case manager in a Medicaid Waiver program that served intellectually and developmentally disabled participants. In that role, I primarily took the cases of autistic children or cases assigned to me due to their advocacy needs. My advocacy work for my case management clients, especially my advocacy for students in public schools, as well as my accompanying abused women to court were significant aspects of my motivation to attend law school. I was also greatly influenced by a family friend who frequently litigated cases for our local ACLU. My interest in disability law grew out of my psychology interests and work experience in healthcare but was also informed by my experiences growing up with a medically complex, paraplegic uncle and having several military veterans, addicts, and abuse survivors in my family. There are not many members of my family who have graduate educations and only a few who have undergraduate degrees. I am a first-generation lawyer.
During law school, I briefly interned for a disability law center, our local designated Protection and Advocacy agency. It was a dream come true to be there, but I was flabbergasted to learn that the attorneys there made barely more than I had made working as a bachelors-level case manager. Later, I also worked as a law clerk for a private practitioner who had a constitutional practice and for a firm that did appellate civil and criminal defense. With the latter job, I still vividly recall having to take breaks to cry and shake in the parking garage as I worked on a piece of appellate writing for a convicted rapist. I learned that summer and through work in trauma counseling that there were limits to the types of legal work I was willing to take on.
I graduated from law school in 2008 near the top of my class. The recession had a major impact on the job market. Most of the legal jobs in the public or nonprofit sector that appealed to me were in a hiring freeze or the process had become inaccessibly competitive, especially for a first-generation lawyer who had graduated from a third-tier law school and couldn’t afford to work for free. After graduation, I waited tables and worked as a bar back while self-studying for the Bar exam. I couldn’t afford a Bar study course, so I purchased used books and learned on my own. That summer, I received debilitating 2nd and 3rd degree burns to my dominant hand and wrist while putting out a grease fire in my kitchen. I had skin graft surgery and spent months in recovery to regain full use of my hand. For a time, I could not work at all. It was a struggle to get dressed or brush my teeth. Once I was able to work, I was still wearing compression garments, a finger splint, and in physical therapy. I noticed that it felt even more difficult to convince anyone to hire me for legal work during this time period, and I was asked about my injured hand if I was interviewed. When would I be better? Could I type? I had no idea.
Eventually I did find a part-time law clerk position with a large firm doing document review. Once I was physically able, I also returned to my restaurant job. I worked both jobs, sat for the Bar, and miraculously passed. Over time, I got more involved with the case at the Firm where I was doing document review as a direct-hire temporary employee. And after spending almost two years “proving myself,” I was eventually offered a permanent position as an associate with health benefits and paid leave–an offer made to me long after my male temp employee peers. I moved into medical records work and then specifically into mental healthcare records, emotional distress injuries, and psychiatric expert evidence. The case involved a major environmental disaster that impacted drinking water. I developed a special interest in research concerning the posttraumatic stress and other psychological and emotional injuries caused by man-made environmental disasters.
In 2012, I quit my job as a litigator to become a full-time parent and work on my writing. I currently reside with my family in the Pacific Northwest. I am a parent to 3 children. Two of my kids are also autistic. The third child has a complex, critical congenital heart defect and is still too young for me to know whether they are autistic or otherwise neurodivergent. I am well aware that children with complex CHDs who have undergone open heart surgery in early life can have neuro-developmental differences, so I will be lovingingly, intentionally supporting my little heart warrior as I learn more about their needs.
It took me quite some time to self-identify as having a disability of any kind or being disabled. I think as a lawyer, there is so much stigma surrounding disability, Bar membership, and fitness to practice. It has been difficult to decide how to self-identify, when and whether to seek formal assessment, and how “out” to be about my identity. I now identify as having a social and stress-related disability and posttraumatic stress injuries. I do not believe disability or disabled are bad words. I won’t treat them as such and am sorry that for many years I did participate in othering disability (and thus the disabled) and treating disability as if it were something unlucky or even per se tragic. With this as with all things, I am learning as I go.
I would also like to share that I am bi/pan-sexual, genderqueer, androgynous, and non-binary. I can benefit from passing privilege if people perceive me in a given moment as a woman or as heterotypical. Because I am still sometimes perceived as a woman and have at times performed femininity as a survival tactic to get work, I have absolutely still been deeply impacted and wounded by toxic masculinity and patriarchal power imbalance.
My family benefits from white privilege related to being white-bodied and having features that come from European ancestry. I have also experienced privileges related to our being English-speaking, being born and raised in a colonizer country, and at least previously participating in the dominant religion of this country. Our family is currently privileged by being middle class and having a family member with full-time employment that comes with a salary and benefits. We are also privileged by me being a well-educated adult. Finally, I believe I am also privileged by my mom working in healthcare most of my childhood and thereafter. I grew up in doctor’s offices and hospitals. I feel very confident talking to medical professionals, legal professionals, and experts in various fields, and I am well-aware that too many people suffer from the paternalism and power imbalance inherent in western medicine as well as the white supremacist legal system.
Over time, as I came to understand what trauma was, I found the words to say that I am a multiple trauma survivor whose life experiences are perhaps well-described by the concepts of transgenerational trauma, complex trauma, and revictimization. I am a complex trauma survivor whose parents were both complex trauma survivors, and while I do not have exact details about all of my grandparents’ childhoods, I have reasons to believe that more than one of them survived childhood abuse and neglect.
I consider all of my mental health diagnoses prior to PTSD and autism to have been misdiagnoses and/or diagnoses that pointed to downstream struggles flowing from my not having appropriate support and accessibility surrounding my trauma and autism. In other words, of course someone who was born with autistic neurology and has endured traumas would sometimes experience… depressive symptoms… anxiety symptoms… and more. Doubly true that I was understandably having downstream “symptoms” because the world around me was filled with ableism and sanism, lacked trauma-sensitivity, and was generally built and run for allistic, neurotypical people who have more psychophysiological resilience than I have had. The systems I live in are not truly accessible to me.
Before I was conceived, my dad subscribed to Psychology Today in the late 1960s when he was just a teenager. As a young undergrad, my mom majored in psychology before leaving school in protest over a religion course requirement. Needless to say, there were psychology textbooks along with pop psych books in my environment from birth, and at a young age I started reading them along with some old medical texts, the dictionary, thesaurus, and encyclopedias. For several years, I thought I’d grow up to be a medical doctor, but over time my interests diversified to poetry, photography, dance, history, literature. If there was anything narrow about my interests, it was that my primary interest was books.
As I wandered into the years labelled adulthood, it was not a huge surprise that I decided to major in psychology and minor in biology when I started college in the Fall of 1995. What was surprising was the breakdown I had my senior year of high school and how that experience became my largest impetus for studying psychology in college. Like many young psych majors, I wanted to understand what was happening inside of me, and I wanted to find the vocabulary and frame for what I intuitively knew but struggled to verbalize about my experience. Additionally, I wanted to understand why I had been so dissatisfied with the care I received from a Psychologist that winter. Back then, I couldn’t put into words what about his care was so off-base, but I knew that with study and work, one day I would be able to do so.
I don’t recall the exact source of my introduction to autism during my time at college, but I remember that my conception of autism involved only its most disabling manifestations. Beyond doubt, the limited portrait of autism I was taught in school contributed to the decades of inability to see myself as potentially autistic. Maybe I heard about autism during my summer course in Abnormal Psychology, or it could have been during my Intro to Psych course my first semester of college. Either way, I remember vividly the first time I sensed that someone in my world was autistic.
During my final years of college, I was also working in a group home with 7-9 adult residents who were disabled enough by their mental health and other sources of struggle that they needed full-time assistance. One of the residents was diagnosed with schizophrenia and the archaic slur previously used to describe intellectual disability. Except he was nothing like any of the the other schizophrenic people I had known, including the ones with co-occurring intellectual disabilities. Over time and after investigating his records and history, I became convinced he was actually autistic not schizophrenic and possibly not intellectually disabled. Given his age, I realized he’d been a child in an era when an autism diagnosis probably wasn’t accessible in West Virginia (or most places). I also realized that the schizophrenia diagnosis was an abusive means to an end that was far too common–he was likely on high doses of anti-psychotic medications as a chemical restraint to control his aggressive meltdowns.
After a few years at the group home, I started to feel burned out. It was a lot of emotional labor. Plus I was also losing hope that I could effect much change in the mental healthcare system from the inside, at least not from the very limited position a BA gave me. It was getting hard for me to manage all the social and emotional demands of work as well as those in my personal life. I had so few social spoons left after work. They were getting used up between my work with the residents and my relationships with coworkers and supervisors. Work politics alone felt insurmountable. When a supervisor sexually harassed me, I had no idea how to navigate the experience. I tried to avoid it, but seasoned coworkers took the initiative for me and began the complaint process with HR.
Further, the more acquainted I became with mental healthcare in its reality versus the ideals I was brewing while reading R.D. Laing books in my spare time, I realized that systemic dysfunction was like a thick, deep, complex ocean of knotted brambles (and that didn’t begin to touch on the societal-level stigma issues that I hadn’t the slightest idea how to ameliorate). I didn’t know words back then like ableism or sanism or psychiatric survivor movement or mad pride, but I did see the systemic oppression. I did know it was a daunting “enemy” I felt called to take to task. But I felt so disempowered by the recurring thought, “What could I possibly do?”
In college, I still forgot to brush my teeth some days and had been struggling to pay bills on time or save any money. My credit was non-existent. I couldn’t drive yet. And I had struggles with my interpersonal relationships from friendships to dating. While my grades were generally excellent, even school was an enormous effort if I disliked a class subject or if I felt my work was subpar. My great work was pretty great, but I needed a lot of breaks and felt myself losing steam. My dad worried I wouldn’t return to school after I took a semester off during my second year of college. However, I was worried that if I didn’t take the break, I would have another breakdown and ruin my GPA permanently. At that point in time, I had no idea what reasonable accommodations were. Given my lack of understanding about my own neurology and needs, I also had no idea I might need accommodations or be eligible for them. I took the semester off despite my dad’s fears. And I did go back the following year. But why did I need the break? I didn’t know. And why did it feel like everything except school work for my very favorite subjects was so hard for me? Who needs food, water, showers, or pee breaks when you have a great hyperfocus going with your favorite subject, amirite?
Freshman year I wanted to transfer to a different college, but I couldn’t get through the application process. When I returned to school after my sophomore year break, I wanted to switch schools so that I could change my major to dance therapy. But then a dance-related injury followed closely by a serious car accident made dance inaccessible. I dropped my biology minor when my perfectionism caused me to struggle with deadlines in my honor’s biology course. And I had a near-miss with a horrible grade in an early english course because it was very hard for me to stay inside my word limits (can you spot the autistic verbosity?).
I got an incomplete grade in a course I had a 97 average in just before the final because I did not make it to the final exam, instead choosing to accompany my roommate to her mother’s funeral. I easily could have worked out a way to reschedule the final, but because of the frightening social-demands created by negotiating another exam date, I opted to receive the incomplete and then re-take the entire course instead. I got an A.
This list is by no means a complete list of my struggles in school or out of school. I am still working on defining my boundaries regarding how much detail to share about my difficulties, and for now, I am opting to keep those boundaries closer in with more of my story kept private than made public. Still, I wanted to share a few of the walls I hit along my path to today, to start the conversation.
As I got deeper into my undergrad education, I became more interested in psychological anthropology, folklore studies, post-Jungians, and myth and literary analysis than traditional psychology. I believed that Indigenous cultures had far more wisdom surrounding holistic psychological wellness and that story was a core feature of human experience. I had long felt like an alien in my family, in my community, in my country. I wondered if somehow I’d been born in the wrong body, place, or time. This sense of not belonging, of nothing making sense to me, led me to study other cultures and religions. I wondered if perhaps I could contribute something useful to humanity by helping to archive Indigenous wisdom. Perhaps this wisdom might serve as teachings for those of us living in the deeply misguided system of western psychology and psychiatry. At that point in the 90s, I did not yet understand concepts like white supremacy or colonialism. I am still not sure that I, as a white-bodied person, will ever fully understand the devastating impacts of these systems in which I am necessarily complicit by my very existence. But I think some part of me could feel their sickness at a younger age, before I had the vocabulary to start confronting those systems and my role in them.
After finishing my B.A. in psychology and english (I had traded in my bio minor for a second major in english, a department where I was offered acceptance and mentoring), I prepared myself intensely to apply for admission to a short list of Ph.D. programs where faculty were doing research on psychological anthropology. Then my best friend died suddenly in a car accident not long after I had survived my own near-deadly car accident. I felt this friend had been the first person to fully see me. She was the first person who noticed and was willing to talk to me about my unusual eye contact and body language and occasional lost words without making them a reason to mock me. And she was the first person who so rightly identified these differences not as emblems of me being stuck-up, arrogant, cold, mean, rude, st**id, re****ed, etc. as most people wrongly interpreted and/or accosted me but as outward manifestations of how shy and afraid I was, how unable to connect to most people. Losing her was enormously devastating for more reasons than can be contained in words. Shortly after her death, our friend who witnessed her accident and held her hand as she died was also in a near-deadly car accident. Between our three car wrecks, my whole world view started a series tectonic shifts. There was no logic to why she died and we lived. Her wreck even involved the lowest amount of speed, and yet it took her life. Everything was indeed impermanent. I had a complicated grieving experience after losing her. For the first time in my life, I went to therapy by choice, completely under my own control. I researched and carefully selected my own therapist. It was a good experience and led to me choosing therapy as a means of self-care at various other major junctures in my life since then.
After getting my B.A., I got extremely mired down in my expertise-anxiety and fears of failure. I could do all the preparation towards graduate school applications from GREs through a year-long, self-directed research project to narrowly tailor my research interests. I self-studied my way through syllabi to intro psychological anthropology courses and looked into professors’ research interests to narrow down school choices. But I couldn’t take the final step. I couldn’t mail my applications and leave my fate to the programs. Everything was at a standstill.
That was the moment, amidst a crossroads of various struggles in my work and personal lives, when trauma revictimization and reenactment took the wheel and completely crashed me. I fell in love with another trauma survivor. It was not the first time or the last. But it was the time that did the most additional damage. He was part of the minority of survivors who become abusers. Together, we re-enacted our traumatic dramas of the past over and over. We were married. Then we were divorced. It was during the lengthy process of separating our lives that I was first diagnosed with PTSD. My intense interest in the study of traumatic stress began that year, 2007.
When my first child was a baby, I watched them like a hawk, tracking their developmental milestones. I kept trying to make sense of why they cried so, so much as an infant, trying to help them, to be better for them, to do my best. At this point, I was still in a place where I viewed developmental disability as abject tragedy and felt overwhelmed by my own anxieties. Not my kid. Not my life. I was comfortable when the roles were that I helped people with disabilities. I was not ok with the idea of parenting a disabled child. I had literally turned that scenario into my personal nightmare. Internalized ableism is mighty powerful poison, and I had indeed been dosed heavily with its toxicity. Perhaps especially so after my multiple miscarriages; I felt some wounded and imbalanced sense of entitlement to a baby and not just to any baby, but naively to a “healthy” baby. I was deeply stuck in my own ignorance, and I was (thankfully) in for a lot of change and challenge to my worldview.
I don’t want to center the telling of my childrens’ stories in this space. Our stories are inextricably interconnected. I believe all human stories, especially stories about trauma, are necessarily transgenerational. So I will talk about my kids, my parents and other ancestors, my childhood, and my parenting experiences–all of that is part of my own story and subjectivity. But I also want to protect my childrens’ privacy, dignity, and rights to their own stories.
Suffice to say that in June of 2015, my first child was diagnosed with autism, a mixed expressive-receptive language disorder, disordered sleep, and alterations of consciousness that are possibly seizures. That first six months post-diagnosis had a steep learning curve as I encountered the writings of autistic teens and adults for the first time in my life and was introduced to neurodiversity concepts. Something about sitting in the role of parent versus the role of paraprofessional changed everything. I was totally unwilling to make choices for my child’s wellness based only on “evidence-based” statistics or the advice of clinical professionals or ivory tower academics. My child was an individual. Autism was exceptionally heterogenous. And statistics and trends were not individualized enough for me to trust them. I knew enough about autism research to know that nobody in the research and clinical worlds really knew much at all with an acceptable degree of certainty. And if any of them projected certainty over the reality of the uncertainty in the field, I knew we should run. So I read. And I read more. I read about autism as quickly as I could take it in. I read journal articles and books. I watched vlogs and read blogs. Over a relatively short period of time, I concluded that I had more trust in the lived experiences of actually autistic people than I did in professionals. I also lost trust in any professional who was not actively engaging autistic people in their process. I would need to observe and relate to my child not some conceptual “autistic child.” The diagnosis raised as many questions as it answered, perhaps more. But thankfully, it gave me a diverse community of autistic people to listen to and hopefully one day to build community with as well.
During this early research dive, something else began to come into focus, something about myself not my child. I encountered multiple sources discussing how autism in non-male persons can look very different than it does in men and boys. Much of what I read resonated intensely with my own experiences. Then my mom kept mentioning that as a child I was so much like my autistic first-born. “But… you did that too.” “But… you were just like that at that age.” “I have seen that exact look on your face when you were little.” I was defensive. I thought she was intimating that his diagnosis was incorrect, but no. She was trying to gently tell me she thought I was also autistic.
Around this same time a parent online, a stranger to me and a fellow lawyer, let me work through my doubts and confusion in a long thread. He encouraged me to seriously take a look at the neurotypes in our family and to consider heritability instead of falling down the rabbit hole of searching for an environmental toxin “cause” for my child’s autistic neurology. Dots started connecting slowly, slowly. A year after my first child was diagnosed, I was also diagnosed. Less than a year later, my second child was diagnosed with autism.
In part, I sought a formal evaluation because I found the relationship between my posttraumatic stress injuries and autistic traits incredibly mushy, gray, and confusing. While I fully support self-identification as a valid means of claiming autistic identity, I wanted some professional insight into this murky land where autism and trauma intersected. Where was the line between the two? There seemed to me to be several similarities. Wasn’t it obvious to other people how many similarities there were? Why was I struggling to find more written about the relationship between complex trauma and autism? Where was the research on this? I chose a female Psychologist for my evaluation, fearing that a male autism specialist might perpetuate male-bias during my evaluation process. The Psychologist I chose had expertise in autism evaluation. She also had a great deal of experience with trauma. I felt confident that she was able to work around the male-bias in autism diagnostics and parse out my autistic traits and my posttraumatic stress injuries. In other words, I was able to trust her opinion almost as much as I trusted my own self-identification. I already knew I was autistic. I felt nearly certain. After all, in 2007 when I was first realizing I had serious posttraumatic stress injuries, I had also confronted my parents and asked if they had hidden an autism diagnosis from me all these years. I knew. But it took my first child being diagnosed and the burgeoning writings on male bias in autism science for me to fully believe my own intuition.
After my diagnosis, I began to tackle my questions about autism and trauma indirectly. If I couldn’t find much by researching autism and trauma head-on, I could at least start to follow research on the systems that appeared to be involved in both neurological manifestations such as the autonomic nervous system. It is very important to note that this stuff is not easy for me to digest or discuss. As the above description of my experience and education indicates, I don’t have formal training in neuroscience or its related disciplines. As I step into this new project, I am asking myself if this lack of training disqualifies me. I don’t think so. I still believe I have something worth saying on these topics by virtue of my own lived experience. I also have good training in research and writing. And who knows? Perhaps I’ll end up pursuing further formal training. Time will tell. And we all start somewhere. I’m starting from here.
I am not a member of the academy or an academic.
I am not a therapist, counselor, or mental health professional.
I am not a medical doctor or other qualified health services professional.
Nothing I write will be or should be construed to be medical advice, psychotherapeutic advice, or other professional health advice or services.
While I am a member of a Bar, nothing I write will be or should be construed to be legal advice or legal services.
At this point, I have no awareness of my having any financial or non-financial conflicts of interests that I believe should be disclosed as a matter of ethics.