Since learning I have autism and attention deficit disorder I’ve been looking back over my life with a completely different perspective. This new understanding fundamentally changes the context and landscape of my personal history, each moment refracted through a different lens. It’s comforting because everything finally makes sense — and I am filled with grief. Why did it take four decades to gain this insight? How did something so obvious, in hindsight, get so overlooked.
Growing up my friends called me schizo, a seemingly affectionate nickname that I didn’t understand. My favorite high school teacher often pointed out my diarrhea of the mouth episodes in front of classmates. On more than one occasion my partner has asked me why are you like that? referring to my being on the spectrum, I guess. Many times I’ve been reprimanded by bosses for bypassing unspoken workplace etiquette. Growing up plenty of adults have made fun of me or scolded me for something very obvious to them, but not to me.
Conversely, after my last post a number of you reached out to share your surprise and confusion about my revelation. It’s funny, as a child people constantly pointed out the ways I was different and now I find myself trying to explain how I’ve built an entire life around shape shifting to conceal my autism/add. These conversations (thank you for your gentle curiosity) illuminated what a great job I have done concealing my autism, how little we know about autism in women, how complex trauma and undiagnosed autism can look similar, and significant mental health issues (substance abuse, anxiety, depression, trauma, relationship issues and isolation) may obscure the underlying disability.
Autism spectrum disorder (ASD) refers to the wide range of symptoms and characteristics, including sensory processing issues, difficulties with social interactions and communication, unique and special interests, and restricted and repetitive behaviors, activities or interests12 However, the lived experience of being on the spectrum can vary greatly and exists in all of the intricate details of a persons life. Explaining my autism/add is highly reductionist — to describe a person's life by telling you about a single moment in their day — but I am willing to give it a shot since the only place I was able to recognize myself was in the stories shared by folks with autism.
Some of the ways my autism/add shapes my daily life is through constantly needing to regulate the sensory input my body is receiving from the external environment so I can be present. There is a lot of negotiation in my house around seeking or avoiding sounds, temperature, touch, smells, and lighting. Getting dressed is filled with angst because wearing clothes that don’t feel right makes me instantly want to peel off my own skin.
Larger gatherings are intensely confusing as well as sensory and empathically overwhelming so I prefer small social gatherings in quiet spaces or outside, ideally walking or engaging in a shared activity. I love my friends and family with all my heart and reaching out to friends is on my weekly to-do list, otherwise, I get lost in my daily routines and special interests.
Communicating requires me to translate my kinesthetic experience of the world into words and sometimes I can’t find the words to adequately describe my felt sense of the world. There is a lot of subtle and implied communication that I often miss. I’m aware enough to know I have social blindspots but it’s hard to grasp what you can’t see. Reading lips and faces helps me deal with my auditory processing challenges. I have a hard time going out to eat because I am unable to read a menu due to my attention difficulties and my thoughts and words get jumbled when it’s time to communicate my order to the waitstaff or cashier.
My repetitive behaviors, actions and interests have been carefully camouflaged to look pretty ordinary. Exercising, watching the same shows, listening to the same songs, wearing the same clothes, eating the same food, walking or running the same route make up the contours of my day. Any small change to the routine or plan is very upsetting, even if it’s a seemingly positive change.
And I have been lucky enough to turn my special interest in psychology into a career. My intuition, empathy and creativity combined with my interests have allowed me to build a career I love and share my work with clients and a community I adore.
So I understand why you might be confused and surprised by my news given how highly I mask my autism and how little we know about autism in general. Research suggests that autism is much more common than was previously believed.3 Males are diagnosed with autism at much higher rates than females. Men and boys who present as ‘higher functioning’ are fifteen times more likely to be diagnosed than ‘higher functioning’ women and girls.45 The constant pressure for girls and women to smile, make eye contact and be responsible for other people's comfort in social situations means that girls and women learn to hide their autism. In addition, children with ASD and ADD are bullied at a rate 3-4 times that of their peers.67 Therefore, for folks, who have the ability, masking becomes a protective response.
I hope this inspires you to get curious about learning more on this topic so people, particularly women and girls, like me, who have survived by masking, overriding, disassociating and avoiding can be supported.
Each person’s experience with autism is unique to the individual. These are just a few of my personal experiences living with autism/add, from a particular moment in time, as someone who has been recently diagnosed. I will never be able to capture and convey the totality of my experience as someone who is neurodivergent because it’s woven into every part of my life and I am aware of my privilege and ability to write and share this post with you all. Thank you for being here and taking the time to read this post!
Books on Autism and ADD
Here’s a list of books from my nightstand that I’m making my way through:
Camouflage: The Hidden Lives of Autistic Women by Sarah Bargiela
Divergent Mind: Thriving in a World That Wasn't Designed for You by Jenara Nerenberg
Look Me in the Eye: My Life with Asperger's by John Elder Robison
Strong Female Character Hardcover by Fern Brady
Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman
Scattered Minds: The Origins and Healing of Attention Deficit Disorder by Gabor Maté
Uniquely Human: Updated and Expanded: A Different Way of Seeing Autism by Barry M. Prizant
Unmasking Autism: Discovering the New Faces of Neurodiversity by Devon Price PhD
What I Mean When I Say I'm Autistic: Unpuzzling a Life on the Autism Spectrum by Annie Kotowicz
There are lots of reasons I might be drawn to a particular book, this doesn’t mean I agree with the every word nor is it an endorsement of the author or book. This is just a list for my book people!
Bennie, M. (2021, June 21). Definition of autism. Autism Awareness. https://autismawarenesscentre.com/definition-autism/
American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://doi.org/10.1176/appi.books.9780890425787
Gillberg, C., & Wing, L. (1999). Autism: Not an extremely rare disorder. Acta Psychiatrica Scandinavica, 99(6), 399–406. https://doi.org/10.1111/j.1600-0447.1999.tb00984.x
Bargiela, S., & Standing, S. (2019). Camouflage: The hidden lives of autistic women. Jessica Kingsley Publishers.
The terms ‘low functioning’ and ‘high functioning’ autism are unhelpful, misleading, and outdated. However, I have used the terms here as these are the terms used in the original research findings.
Hoover, D. W., & Kaufman, J. (2018, March). Adverse childhood experiences in children with autism spectrum disorder. Current opinion in psychiatry. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6082373/
Montes, G., & Halterman, J. (2007, May 18). Bullying among children with autism and the influence of comorbidity with ADHD: A population-based study. Ambulatory Pediatrics. https://www.sciencedirect.com/science/article/abs/pii/S1530156707000317