I want to preface by acknowledging that I am aware self diagnosis (of any kind) is frowned upon. I don’t disagree that it’s potentially dangerous and/or invalid in a lot of situations. That being said, I’m self diagnosing myself anyway.
I’m doing it because I was quoted 5k out of pocket for a full adult assessment, and that’s outrageous.
I’m doing it because I’ve gone too long being misunderstood in a variety of ways, and that includes misunderstanding myself too.
I’m doing it because my self acceptance might give someone else the courage to embrace who they are too.
But mostly I’m doing it for the little girl I used to be, who lived her entire childhood thinking she was innately broken. I know now that she wasn’t broken. However, she was overlooked as being on the autism spectrum, despite the adults in her life acknowledging a variety of red flags. It’s now suspected that females of my generation have gone largely undiagnosed and untreated for ASD. Or if they were diagnosed and treated it was for their comorbidities or even sometimes misdiagnosed with things like ADD (now just ADHD), OCD, MDD, BPD, APD, etc.
So, I would like to offer insight for anyone interested in my personal experience and current perspective. Perhaps what I have to share could be useful to some, but also my sharing is just deeply cathartic at this point.
And I want to be clear that I do not place blame on any of my parents, caretakers, teachers or any professionals who saw me. I’m not interested in pointing fingers. What’s important is that we learn and grow so that we can collectively do better for the future.
The following is a list of neurodiverse related traits I exhibited in early childhood:
• Dysgraphia (extreme spelling/writing difficulties)
• “Selective” Mutism (not a choice, despite its name)
• Obsessive thoughts and hyper-focus
• Hypersensitivity to sensory stimulation
• Stimming; self soothing repetitive behaviors
• Emotional dysregulation
• Paralyzing perfectionism
• Perceived laziness
• Intense need for predictability and routine
• Shutdowns
A lot of struggle came with these traits.
I struggled in school. I exhausted the resources available. I frustrated adults… parents and professionals. A million things never clicked for me. I didn’t process information in a way that allowed me to move forward. I would shut down and fall asleep in class or while trying to do homework assignments. I constantly turned in incomplete work, often times not at all. Once I reached high-school, my GPA was as low as it could be. I watched as one teacher in particular debated in front of me whether or not to sign off on a passing grade for my ability to graduate high school. I fell through the cracks of a school system unhelpful for someone like me, over and over, and I was often given passing grades out of pity.
I struggled with mental health very young. I was too much and too little at the same time. Everything was too intense for me, and I was too “sensitive”. At the same time, I was often nonverbal and hard to help. I was an easy target for abuse and was often scapegoated. I was hyper-vigilant and focused on getting ahead of any perceived threats. I self harmed, shamed and hated myself. I constantly daydreamed about not being alive by the time I reached adolescence. Medication for depression only made things worse for me personally, and I wonder now how much of it from such a young age was actually “autistic burnout”.
I struggled with relationships. I wouldn’t look people in the eye. I wouldn’t speak. I rarely felt compelled to talk. I enjoyed being alone. I didn’t know how to connect with my peers. I didn’t understand my own emotions. I feared other people and their emotions because I felt them just as much as my own. I was painfully awkward. I latched on intensely to people who fascinated me. I didn’t understand boundaries. I feared abandonment.
Somewhere down the line in my teens, I began to hyper fixate on people in general. I became obsessed with what made them think, feel and behave the ways they do. Rather than seeing myself as one of them and interacting with them naturally, I instead began to observe them. This is where I learned and practiced a lot of my social masking skills.
Masking, if you are unfamiliar, is when a neurodivergent person mirrors neurotypical behaviors even if it’s uncomfortable for them. For me something like making eye contact is a masking habit and I have many others. Masking is often seen as an attempt to fit in, but ultimately it’s a form of self-protection from ridicule.
In early adulthood, I discovered I had a favorite type of person: children. Children would gravitate toward me. I didn’t realize it at the time, but it was because I innately treated them as equals in a world where they so often aren’t perceived as such. They often overwhelmed me, but I developed an energy management system and built up a tolerance for the sensory challenges they presented me. I’ve been told that children benefit from my calm demeanor. Which is interesting because inwardly I’m anything but calm. Luckily, very little of what goes on internally for me gets translates outward, and I’m glad children benefit from this.
Early adulthood is also where I began self-medicating with alcohol. Turns out there’s a significant link to substance disorders and neurodiversity, especially among those undiagnosed and untreated. For me personally, alcohol dulled the intensity of sensory. With it, I was able to better focus on socializing, and it made a lot of my initial practice with masking possible. Anytime I was in a social situation or stressed out I turned to alcohol and society encouraged my consumption. To my knowledge, most people never considered me to be an alcoholic. My life wasn’t being impacted by my drinking in ways typically associated with “hitting rock bottom”. But there were major impacts happening underneath the surface, perpetuating and worsening issues with my nervous system, mental and physical health.
Last fall, I was scrolling on social media when I came across a post by a woman and mother about my age announcing that she was about to enter rehab. She spoke about her mental health struggles and her secret dependence on alcohol. I related so strongly that by the time I was done reading her story I realized that if I was ever going to truly heal and give myself a “full cup to pour from” I too needed to enter recovery. But I didn’t have the option of entering a rehab, so I just went cold turkey on my own. Today, October 2nd 2022, I am one year sober. To say I’ve processed a lot in that time frame would be an understatement. It’s been excruciating, but worth it. For the first time in my life I feel genuinely proud of myself.
As far as my self diagnosis goes, I consider myself to be a person with “high functioning” autism. I personally prefer the term “low needs”. Despite those terms I am still impacted on a daily basis, and I’ve discovered without the use of alcohol, over time, some of my traits are becoming more difficult to suppress.
Things I struggle with and/or are difficult for me as an adult on the Autism spectrum:
• Being tactful
• Interrupting in conversation and understanding conversational cadences
• Being casually touched
• Light and sound sensitivity
• Taking things too literally
• Conveying my thoughts both verbally and written
• Over-explaining
• Hyper focus on my passion/work
• Recognizing faces
• Not knowing what I am feeling and why I am feeling it
• Emotional control
• Trying new things
• A compulsive focus on future
• Accepting changes or embracing whim
• Understanding some social cues
• Task initiation
• Aphantasia
I was in active addiction for all of my adult life, and the recognition of being a person with Autism is just one aspect of the recovery journey I’m on. I am happy that with this knowledge, I am able to develop real acceptance and compassion for myself. As I enter my second year of sobriety, I am hopeful that I will continue to make strides in healing and accomplish the many things I once told myself I never could accomplish.