On the eve of my twenty-sixth birthday, I frantically googled the phrase, I don’t feel like a real person. This online investigation came during a mental health crisis that has come to define most of my mid-twenties. Two years prior, I began suddenly experiencing recurrent panic attacks, derealization episodes, and a rapidly developing case of agoraphobia. I contacted a therapist, and then another, and then another, and got to work. 

There were a handful of diagnoses and treatments during the first couple of years of my quest to get better: mindfulness for generalized anxiety disorder, cognitive behavioral therapy for panic disorder, exposure and response prevention therapy for obsessive-compulsive disorder. Xanax to take as needed for a combination of the three. And little by little, I did improve. I stopped hyperventilating when I had to go into public. I stopped picking at my cuticles until they bled and plucking out my eyelashes. My appetite slowly returned, and so did my willingness to get out of bed before noon.

But, still, something was missing. I was functioning, but I was just going through the motions. So, I turned to Google. I don’t feel like a real person. Amongst the pages of results, mostly ads for online therapy providers, I found a Reddit post.

I’m a high masking autistic– here’s what that feels like. 

The post detailed exactly what I’d been trying and failing to put into words for nearly all of my life: intense sensory experiences, mirroring or mimicking peers in social settings, missing social milestones like dating, a flimsy sense of self, obsessive interests that were shrouded in shame, chronic guilt, a constant feeling of being observed even when alone, and a dozen other bullet points. It was like someone found a way to read my mind and hand my own thoughts back to me.  

My initial reaction was a fair bit of shock. How could I be autistic? Autism, in my mind, was a peculiar boy with a knack for advanced mathematics, or chemistry, or theoretical physics. Sheldon Cooper (The Big Bang Theory), or Raymond Babbit (Rain Man). I was a woman with a liberals arts degree from a mid-range university, with no special talents of which to speak. I’d never been socially graceful, but I had a husband and a couple of close friends. My interests, though much more intense for me than for my peers, were relatively mainstream and socially acceptable. I was nothing like the stereotypical portrayals of autism I’d consumed in television and film. Like most people, the only times I knowingly encountered autism was when I was being confronted with a stereotypical portrayal. 

There are many reasons for reductive portraits of autism in popular media, but chief among them is the fact that diagnostic criteria, and the representation they inspire, are based on the behaviors of young autistic boys. Autism presents differently in girls and women. (Of course, it is worth mentioning that many boys fall outside of traditional presentations, as well.) Girls are more likely to experience sensory symptoms than boys but less likely to experience communication difficulties like mutism. Girls are more likely to internalize their symptoms than boys are, which leads to fewer visible meltdowns but higher rates of depression or anxiety disorders. (Many autistic women will be diagnosed with those disorders first, even though they develop as a result of underlying autism.) 

Also, though girls experience intense special interests at the same rates as autistic boys, those interests are often more socially acceptable on the surface. Think of how often the term ‘fangirl’ is thrown around to describe a female presenting individual who is deeply obsessed with something that her peers casually enjoy. We, as a society, tend to dismiss those interests as intense or passionate, when we should be acknowledging them as special interests– a uniquely autistic trait. Further, autistic women tend to do something called ‘masking’– an intricate and exhausting process that involves mimicking neurotypical peers to hide their autistic traits. Also, the thing I was doing for twenty-five years that ultimately led to the mental health crisis that defined my mid-twenties.

Nearly two years of research led me to a much more well-rounded and inclusive idea of what autism can look like. Yes, sometimes an autistic person is a child prodigy making sitcom-esque social missteps. And sometimes, an autistic person is a shy girl who really loves Taylor Swift and has always been almost, but not quite, like her peers.  

            In the end, after days of interviews by (yet another) therapist and more paperwork than was required to buy my house, I was diagnosed with autism.

In the most earnest of terms, being diagnosed as autistic saved my life. A diagnosis came with many things: the language to properly explain my experiences, access to resources and accommodations that allow me to thrive instead of just survive, and a community of autistic adults who welcomed me into their midst.

            Most of all, it gave me permission to hang up the carefully crafted mask I’d been wearing for most of my life. With the help of a great therapist and a network of new autistic friends, I nurtured all of the fractured parts of myself and rediscovered who was underneath that mask all along: me. 

            She’s not perfect. She’s insatiably curious, wilful to a fault, and hopelessly obsessed with collecting vinyl records…but she’s me. And I’m happy to finally meet her.

An earlier diagnosis would have expanded my world in ways I can hardly imagine. I would have been able to access accommodations in school and professional environments– like sensory supports, direct communication, or flexible work time. I would have been able to focus more on developing fulfilling friendships with kids like me instead of working so hard to build friendships with people with whom I had little in common. Most importantly, I would have avoided the extended period of autistic burnout that occurred after masking for so many years.

            Experts estimate that nearly 80% of autistic women are undiagnosed as of their eighteenth birthday. Many of those women will spend their entire lives without ever being properly diagnosed and receiving appropriate support and accommodations. This is largely because of the stereotypes that exist around autism, so we have to change the conversation. We have to be able to step outside of our own preconceived notions and see autism for what it is: a wide and diverse spectrum. Not a line graph between barely and very autistic, but instead, a community of unique individuals sharing a neurotype. 

            My life is now full of autistic people who exist far outside of the same stereotypes that prevented an earlier diagnosis for me, and who, because of that, were also diagnosed later in life and missed out on valuable accommodations and therapies. Autism already comes with its own set of difficulties– outdated portrays and diagnostic criteria shouldn’t be among them.

At no point in my life was I Sheldon Cooper (The Big Bang Theory) or Shaun Murphy (The Good Doctor).  I was shy, and lonely, and desperately longing to bond with my peers in a way that I just couldn’t. I was deeply obsessed with political theory, classic literature, and the TV show Supernatural. I was called an old soul, or wise beyond my years, or kind of weird. But I was then, I am now, and I have always been autistic. 

This article provides a very abridged description of autism. If you suspect you may be autistic, please check out the resources available at https://autisticadvocacy.org/about-asan/about-autism/ or at https://awnnetwork.org/. 

This was written by our contributing writer, Kate Schifano.