The Dangers of Medical Gaslighting for Autistic Folx
“Gaslighting is when someone in power uses manipulation to make another person doubt [their] own judgment, or even sanity,” according to Sarah Fraser MD in her article The Toxic Power Dynamics of Gaslighting in Medicine. It is a common tactic used by emotional abusers and unfortunately a common issue faced by women, people of color, the disabled, and other marginalized communities, specifically within healthcare. According to a study published in 2019 by sociologist Dr. Paige Sweet, gaslighting is rooted in systemic oppression, social inequalities, and abuse of power. As an autistic nonbinary person, I have first hand experience with medical gaslighting and the serious damage it can cause.
I was a teenager when I realized that I responded to sensory stimuli differently compared to my family and friends. My family would spend a day out shopping and I would be drained hours before them. I would become moody and irritable. I didn’t understand why cluttered spaces and fluorescent lighting or even just sunlight zapped me of all my energy. I began to research the term “sensory overload” and kept seeing Autism as a cause. I stopped researching for awhile because it seemed outlandish. I ignorantly believed that if I was autistic then surely I would’ve been diagnosed as a child and know it.
At the time, I didn’t know that many autistic women, trans, and people of color mask their autistic traits to fit into society. If you are undiagnosed and grew up learning how to hide your autistic traits, it can be difficult to realize that you are masking. It is even harder to unlearn those habits and rediscover yourself. Masking is very alienating. It is a constant social performance. You put all of your energy into appearing “normal” while everyone else does it easily. Constantly masking is damaging for an autistic person’s mental health and usually leads to severe burnout. Burnout causes autistic traits to be exacerbated because you have less energy to mask those traits like you used to.
This is what happened to me throughout middle and high school. I was not able to keep up with masking my traits and began to struggle with my mental health at eleven years old. I didn’t know that I was autistic but I knew that it was very hard for me to understand, identify, and process my big emotions. I began to repress my emotions at a very young age which led to me developing panic attacks and meltdowns at twelve years old. I didn’t know that I was experiencing autistic meltdowns and shutdowns. I was instead considered very emotional or a moody/irritable teen. I struggled with maintaining friendships, making new ones, and even communicating with my parents. No one realized that my social and communication struggles were connected to Autism. Instead, I was diagnosed with social anxiety by a therapist that triggered my social anxiety so badly that I refused to go back after two visits.
As a junior in high school, I dove deeply into researching Sensory Processing Disorder and Autism. My partner at the time was supportive of my autistic identity and I began to unmask slowly. I made a conscious choice to start stimming (self-stimulatory behavior that autistic people use to process the world around them). I did so much research and I knew that this identity made sense for me but I was nervous to bring it up to family and doctors because I knew that there was a lot of stigma and misinformation.
I was right to be nervous because I was met with lots of gaslighting when I initially tried to open up to my family and doctors. My mother’s response was “it’s impossible that you’re autistic because you were affectionate and loving as a child.” This is obviously an ignorant notion because affection and love has nothing to do with Autism. Autistic children can be loveable and cuddly. Autistic people are not devoid of emotion or empathy. In fact, we can even be hyper-empathetic.
When I was beginning my journey to unmask and learning how to stim to manage my sensory overload, I was very self-conscious of people seeing and judging me for these repetitive behaviors. But I knew that if this helped me feel comfortable and get through the day, then why should I stop? That’s what I thought when I visited a spa with my mother and sister. Before the spa we went to a small, cluttered, noisy bakery. I lightly rocked back and forth in my chair to comfort myself through the overstimulation. My sister glared at me and said “stop rocking back and forth. You look so weird. You’re not autistic. I know autistic people at my school and you’re not that.” My heart broke and I closed myself off. I no longer unmask around my sister. I spent the rest of that day feeling hurt and misunderstood. My mother and sister were annoyed that I was upset and quiet.
At that age, I trusted my therapist. I opened up to him about my suspicion that I’m autistic. He shot down that idea very quickly because I wasn’t similar to his other autistic patients. I could make eye contact and understand his jokes. I had good grades and extracurriculars and friends. According to him, that meant that I’m definitely not autistic. But when he described my diagnosis of depression and anxiety, he admitted that I have unexplained symptoms (sensory issues and emotional dysregulation). When I explained that I suffer from sensory overload to my psychiatrist, he wouldn’t consider Autism but recommended I see a neurologist. When the neurologist heard that I got into Boston University, he also dismissed Autism. Instead, I had an MRI and was tested for seizures. The only thing I learned about myself from that doctor’s visit is that I have a deviated septum (a wonky nose). That was three different doctors that refused to even consider that I might be autistic. What would you think? I thought that I was wrong and maybe if I just ignore this whole Autism thing it’ll go away.
So I went to Boston University at 18 years old with undiagnosed Autism and very little support while deeply involved in an abusive relationship. I’m sure you can guess that my first year of college did not go well. In fact, it was traumatic. Very quickly, I was unable to take care of myself emotionally or physically. My grades plummeted and I made so many risky decisions. I ruined an old friendship and failed to make any new ones. Covid-19 was the cherry on top that made me certain I was not returning to Boston University next fall. Throughout that school year at BU, it became so much clearer that I was struggling because I was ignoring my needs as an autistic person.
During that difficult year, I decided to try again to find validation from a doctor. Someone that I was very close to, went to an autistic therapist. I had even met this therapist and done a session with him and this person (let’s call them R). I sent R a short list of reasons why I thought I’m autistic and asked them to share it with their therapist for me. Finally, I wasn’t gaslit. He believed me and said it is possible. He assured me that Autism isn’t an illness and I don’t need to suffer to be autistic. Even if I have friends and can laugh at a joke, that doesn’t mean I’m not autistic because it affects everyone differently. He acknowledged that Autism presents differently in AFAB people and the diagnostic criteria/process is inaccurate particularly for non-men which means many women and trans people are undiagnosed or misdiagnosed for a long time.
Gaslighting from doctors and even my own family, forced me to continue masking my Autism which directly contributed to harmful coping methods and emotional trauma. Medical gaslighting has been a huge obstacle in getting an accurate diagnosis for me and probably many other self-diagnosed autistic adults. Even autistic people that are officially diagnosed often deal with gaslighting. Our sensory needs are dismissed with phrases like:
“Get over it. It’s not that bad.”
Allistic people often don’t understand that certain sensory stimuli can be painfully uncomfortable for us. They also don’t understand our discomfort in social situations and dismiss us with phrases like:
“Look me in the eyes. You’re being rude.”
They don’t understand that sometimes we don’t have the energy or ability to process language. They get angry and say:
“Why are you ignoring me? Just speak up!”
All of these are examples of gaslighting that autistic people face on a daily basis. These harmful comments make us feel broken and outcast. They are ableist statements that make us scared to show our true autistic selves.
Dear reader, if you are not autistic, please make every effort to believe, validate, and accommodate the autistic people in your life. And if you are autistic (or suspect that you are), you are valid and you deserve to have your needs met in whatever way that looks like for you.
