A look at how the diagnosis of asperger’s disorder being replaced with the broader diagnosis of autism spectrum disorder (ASD) has had an impact on a mother and son.
Prior to 2013, individuals diagnosed with asperger’s disorder were described as possessing degrees of characteristics that were distinct and different from neurotypical people. Though varying from one another in their unique presentations, people with asperger’s generally struggled with deficits in common areas.
They possessed difficulty with various aspects of communication and social interactions and, though usually intelligent, navigation through their days was often a struggle. Ritualistic and repetitive behaviors were common, change was resisted, and they often exhibited extreme interest in certain topics which they researched, engaged in, or spoke of fanatically.
Differences in sensory sensitivities often caused distress and challenge, and many more characteristics additionally affected their daily life. These individuals are sometimes described as “quirky” or “odd,” but are also creative or gifted in many ways.
Historically, there has been controversy as to whether asperger’s existed on the high functioning end of the autism continuum, or rather, if it existed as a distinct subset. But in May of 2013, with the new classification of the American Psychiatric Association (APA) in the DSM-5™, the diagnosis of asperger’s disorder was replaced with the broader diagnosis of autism spectrum disorder (ASD).
Moving forward, the diagnosis of asperger’s would never again be given; it was eliminated and absorbed into ASD. Persons diagnosed prior to this time did not require reassessment to take on this new diagnosis of autism spectrum disorder. However, many people with the now-obsolete diagnosis of asperger’s prefer to continue to use the label rather than the updated ASD terminology. Many identify with “asperger’s” and share a community of understanding for the characteristics, challenges, and strengths that have become associated with that surviving term.
Accepting my son’s ‘new diagnosis’
So, having lived through that change and the surrounding unrest, what were our opinions? My son, David, was just shy of 20 years of age when the DSM-5™ was released. He had been diagnosed at age two with pervasive developmental disorder, which evolved into high-functioning autism (two other diagnoses that have also been similarly eliminated). As his presentation further emerged, the diagnosis was re-specified as asperger’s disorder during his school-age years.
Initially, I admit I was concerned with the new classification. Despite professionals adding further specifications and severity levels when officially diagnosing ASD according to the DSM-5™ criteria, all the public hears is “autism.” Although I understood the rationale behind the new classification and accepted David’s autism, I was still reluctant to embrace the decision.
The spectrum is so broad; without knowing the levels and specifics of a person’s professional diagnosis, the general term “autism” can encompass vast possibilities of characteristics and functioning, and it is associated with stereotypes. Despite the individual variability inherent in asperger’s, it at least narrowed things down. I felt the APA changes added to public misunderstanding.
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Wearing autism as a ‘badge of honor’
Surprisingly, despite David’s difficulty with change, he had no problem at all accepting his new diagnosis and labelling. Here is his current explanation for his openness:
“The way I saw it; the two terms were interchangeable. I wasn’t wrong using either expression, and it didn’t faze me to say I was autistic. It didn’t alter my life in any way. The concept of me having autism wasn’t foreign to me, and it didn’t change who I was or how I acted. I had already embraced and accepted the life I led with my differences in tow. I never saw any negativity in the term ‘autism’.
In a way, I wore it as a badge of honor. The name is just the name, and it didn’t affect how I utilized my abilities in life or how I thought of myself. It didn’t change the accommodations that I needed to succeed, and it never made me question my ability to achieve success. We can change the title, but that doesn’t change the person.”
Several years later, I am definitely more on board with the new classification and respect it, though it took some adjustment for me. Although asperger’s continues to be part of the identity David grew up with and a term we still intermittently use (it is actually part of our website name), we are totally comfortable with David’s diagnosis of ASD.
Personally, although I believe the new classification brought more confusion to the world in 2013, it also brought headlines and conversation—which brought about increased awareness. I feel like the term “autism” is not as taboo to discuss or disclose as it seemed to be in the past. The strengths and gifts of individuals on the spectrum are now commonly being showcased in the media. I feel there is more familiarity, openness to learn, and interest within the neurotypical population.
Though there is still much work to be done regarding stereotypes and understanding, I believe we are much farther along than we were in 2013. The huge hurdle is this: It is not enough to increase awareness; we must also increase acceptance—and that must translate to opportunities.
That is exactly what David and I strive to do via our book, writings, and public speaking. David personifies autism and brings new perspectives and enlightenment to people, and that, we hope, will stimulate understanding and change.
This article was featured in Issue 112 – Understanding Diagnosis & Disorders