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.
11 thoughts on “What’s In a Name? Asperger’s vs. Autism”
Very well explained. It can be exhausting explaining the condition to neurotypical people.
Thank you, Chris! I certainly know the feeling.
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Can I just say what a comfort to uncover somebody that genuinely understands what they are discussing over the internet. You actually understand how to bring a problem to light and make it important. A lot more people should read this and understand this side of your story. It’s surprising you are not more popular given that you most certainly possess the gift.
Thank you very much, Ward! I appreciate the kind words and am grateful to know that my work and experiences are resonating.
Aw, this was an extremely good post. Taking a few minutes and actual effort to produce a superb article… but what can I say… I put things off a whole lot and never manage to get anything done.
Scot – Thank you for the feedback. I have to say, I mull over my posts quite a bit. Posting my thoughts for public view is scary. I understand putting things off. Life gets in the way sometimes. Thank you, again.
Your style is so unique in comparison to other people I’ve read stuff from. Thanks for posting when you have the opportunity, Guess I will just book mark this blog.
Thank you, Patrica!
Hiya, I’m really glad I have found this information. Today bloggers publish only about gossips and web and this is actually annoying. A good website with exciting content, this is what I need. Thanks for keeping this web site, I will be visiting it. Do you do newsletters? Cant find it.
Hi, Marlana! I apologize. For some reason it bumped your comment to my spam folder. I don’t have a newsletter at this time. It is on my mind for the near future. You can sign up to receive notices each time I post. It’s in the middle of the Home page. I’m glad my content is resonating. I started this blog because I felt it was a great way to explore myself and what being an autistic woman means for me. A newsletter is in the future for me but not quite yet.
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This is an awesome post. I have a very similarly titled one in my drafts. I, too, identify as having Asperger’s. So glad you posted this.