Humans have fluid identities. The names or labels we use influence how we see ourselves and our place in the world. We build our experiences, emotions, and communities around those labels. As new labels are added to our lives, we reevaluate our identities to incorporate our new understanding.
This process happens after an autism spectrum disorder diagnosis. Names have value in our identities so it’s no wonder that a “battle over the name” has cropped up since the removal of Asperger’s Syndrome from the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Published in 2013, the DSM no longer supports an Asperger’s Syndrome diagnosis. Instead, the DSM reclassified it as autism spectrum disorder.
The general argument for the change is that the parameters for Asperger’s were not accurate and inconsistently applied. By reclassifying it, the methods for diagnosis are more standardized. It helps cut down on the confusion when diagnosing.
Asperger’s fits comfortably on the autism spectrum. As a spectrum, individuals have different needs, but the types of symptoms remains consistent. To be diagnosed with Autism Spectrum Disorder, an individual must have social communication and reciprocity deficits and restrictive and repetitive behavior. These parameters for a diagnosis encompass those who would have received an Asperger’s Syndrome diagnosis before 2013.
Despite the exclusion from the DSM, many continue to use the term Asperger’s, and it has caused a debate within the autistic community. It turns out there is more to the term Asperger’s than just a name.
For those diagnosed before 2013, Asperger’s has become a part of their identity. It was the label given to them. It explained why they are the way they are. For a group of people who rely on routine and predictability, it is easy to see why a change in diagnosis can cause anxiety. They researched and learned about themselves in relation to an Asperger’s Syndrome diagnosis.
Although my diagnosis is high-functioning autism, the psychologist who diagnosed me continued to refer to it as Asperger’s. (Had I been diagnosed before 2013, she said, I would qualify for the Asperger’s Syndrome diagnosis.)
It was with this term in hand that I set out on a path of understanding and self-acceptance. Following my diagnosis, the books I read to learn more about myself were written by adult Aspie women. Those early days of research aligned the Asperger’s label with my identity. The women I’ve learned from still use the term. I built my community on the term Asperger’s.
But I know it isn’t my “official” diagnosis. So, in the past few months, I’ve worked harder at moving between the two labels; increasing my comfort as an individual on the autistic spectrum.
There is a stigma associated with autism. People are less familiar with Asperger’s than autism; and this opens the door for me to educate them. It’s the groundwork to influence their perceptions before diving into the “it’s on the autism spectrum” part.
Besides, we all know about Rain Man. He’s laid out some restrictive assumptions about what autism is and isn’t. I do not align with most people’s perception of autism. My life is littered with rejections, abuse, and bullies; people have always misunderstood me. Misconceptions about autism stare me down like a beady-eyed schoolyard bully ready to corner me on the playground. I fear those perceptions.
While I feel “Aspie,” I catch myself using autistic more often. In expanding my connections to other autistic women, I feel less alone in my responsibility to educate the public. My confidence in confronting other’s assumptions about autism is also growing. The more I understand myself, the more comfortable I am in educating others. Maybe there is a correlation between the two.
Eventually, I will catch up with the DSM. I’m a high-functioning autistic (there is also a debate about the low, middle, and high functioning classifications).
The only way to change incorrect assumptions is to confront and counter them. Asperger’s was my introduction to what makes me tick. And it will be the pathway to accepting my formal diagnosis.
Whatever your take on the labeling debate, patience and consideration should be at the heart of it. Those who continue to call themselves Aspies have their reasons. And those who decided to make the switch have their own set of reasons.
As humans, we spend our lives struggling with our identities. For many late-diagnosed women, the road to understanding our differences is a long one. Society makes autistic life difficult enough as it is. Let’s give each other a break and the space to explore our identities and our world in the ways that work best for ourselves. At our own pace, we will embrace this piece of our identity. More than a year has passed since my diagnosis, and I’m still trying to embrace it. Let’s allow each other to do it at our pace because each of us is different – and so are our experiences.