“ASPERGER SYNDROME:” What’s In A Name?

About Hans Asperger, M.D.

Juliet: “What’s in a name? That which we call a rose
by any other name would smell as sweet.”
Romeo and Juliet (II, ii, 1-2)
Author: William Shakespeare

The conundrum

“Asperger” Syndrome, Autism Spectrum Disorder, High-functioning Autism? I had been conflicted for a long time about what to name our membership group website. Unlike what Shakespeare wrote, “Asperger” Syndrome is not akin to a rose. Nor does it smell as sweet by any other name. Not only is the disorder complex, but its name is also rife with controversy (political and clinical).

Eventually—for reasons practical, professional, and personal—I settled on this name for my membership website, “Asperger” Syndrome & Relationships: Life With an Adult on the Autism Spectrum. The name matters because this website is intended as a beacon to those who need support. I wanted a name that would be easily recognized while representing what our group stands for: to know that you are not alone and that your voice matters. These two things are, well, huge for the NeuroTypicals (NTs) who seek us out. Here’s more about those reasons:

• The Practical Reason? Hundreds of members have tracked down our group because they searched the Internet using the popular term, “Asperger” Syndrome. Accessibility is vital to a group of NTs who feel lost and adrift. They may not know there is any other term for “Asperger’s.” They certainly don’t know the history of the word.
• The Professional Reason? I have published three books that use the term “Asperger” Syndrome. My work as an author and psychologist is associated with it. Plus, many mental health professionals still use the term for similar reasons.
• The Personal Reason? For more than 25 years, using the term, “Asperger” Syndrome, has helped many NTs learn how to be more supportive of loved ones with Autism Spectrum Disorder (ASD). “Asperger” Syndrome was developed to help distinguish between those with traditional autism and those at the high-functioning end of the Autism Spectrum.

This term has allowed us to see our ASD loved ones more clearly, recognizing that those on the higher end of the Autism Spectrum (i.e., those with “Asperger” Syndrome) are often extremely capable in many ways. Even those at the high-functioning end of the Autism Spectrum embraced the name difference as something positive. It was an Autist who coined the term, “Aspie,” in a desire to be set apart.

The Lesson of the Self-Portrait—Relationships

While “Asperger” Syndrome is an important part of our membership group’s name, so is the word, “relationships.”

Recently, one of my NT readers asked if he could have a digital copy of a drawing I published in my book, “Going Over the Edge?” It is a drawing my daughter Bianca created when she was a young teenager. The illustration was how she’d responded to a school assignment to draw her self-portrait. Bianca has “Asperger” Syndrome. My reader wanted the drawing because it reminded him to focus on the struggles he has in relating to his ASD wife.

I remember watching that day as Bianca drew with a No. 2 pencil. She started at the far right top of the page, drawing the bird’s wing. Then, she filled in the rest of the bird and, quickly, the other details. I was amazed at her talent. It was the stunning meanings behind her drawing that broke my heart.

“How do you like the bats flying out of my nose?” Bianca had asked. It was only then that I recognized the disturbing messages in her self-portrait. It depicted her noisy, creative brain and a frightening cacophony of wild, angry, primitive animals. What I’d thought was a beautiful bird with outstretched wings was screeching in her ear. Snakes writhed around her mouth. Prehistoric raptors clashed. Wolves howled. There are some peaceful aspects to the drawing—an Orca breaching, a flower, and a butterfly—apparently representing a little calm in the jungle of her mind.

The incredible depth of Bianca’s self-awareness was revealed in how she sketched her hand. The fingers represent intelligent animals—a dolphin, horse, wolf, and hawk, but her thumb is a woman, wearing a long cloak that covers her from head to toe. The opposable thumb distinguishes her as human, but her humanness is shrouded.

As if my mother’s heart needed yet more to ache over, I noticed a small figure of a girl, hidden in the wilderness of her mind as depicted in the drawing. The girl looks frightened and alone as she hugs her knees to her chest. She huddles beneath the tail of an iguanodon with a ferocious plesiosaur swimming by. How had I not known that my beautiful child felt this alone and so in danger?

Given the personal nature of Bianca’s drawing, I asked the NT reader who’d requested a copy why the picture was so important to him. He said he wanted to use it as a screensaver, as an ongoing reminder of what he and his “Aspie” wife live with every day. He said:

“. . . I’ve been struggling with finding and defending my self-worth and establishing a sense of value. Seeing the drawing opened up an epiphany in me: For all these years, I’ve been providing that little girl curled up in a ball in the middle of all that screaming chaos with a normal, fulfilling life that I don’t think many other people would have been able to do. That’s real value right there and an effort worth a life. I’m sure I’ll continue to struggle with needing recognition and appreciation, but at least I might now start to have and eventually internalize a context to appreciate myself.”

The lesson of Bianca’s self-portrait was that our membership group name needed to include the principal concept—relationships. It is through the complexities in the relationship between NTs and their “Asperger” loved ones that we come to know ourselves on a deeper level. As my NT reader had recognized, his efforts are of value. He does make a difference. He has started to take back his life from the chaos in his relationship, which will enable him to again appreciate his radiant soul.

About Dr. Hans Asperger: A painful inconsistency

On April 19, 2018, the New York Times published findings showing that Dr. Hans Asperger had been a Nazi sympathizer during WWII. As an Austrian pediatrician, he’d made an important discovery in the field of Autism: There are children with High-functioning Autism. Later, this diagnostic category was given his name and called “Asperger” Syndrome.

This was an important discovery, but it doesn’t negate that Dr. Asperger had also helped identify children deemed defective by Nazis. He’d referred those children to the Third Reich’s child euthanasia program. Details in the New York Times article.

Before Dr. Asperger’s allegiance to Nazis was exposed, the term, “Asperger” Syndrome, had become widely accepted in common parlance: It is not easy to replace. My books were written before this discovery about Dr. Asperger. For revised editions, my publisher at that time, AAPC (Autism, Asperger Publishing Company), has asked that I remove the term in my books where it is convenient.

On our website, as with my books, I have made the tough choice to keep using the term with the doctor’s name. Given the sensitive nature of the bone-chilling revelation about Dr. Asperger, I have made every effort to substitute, “Asperger” Syndrome, “Asperger’s,” and “Aspie,” with ASD, Autism Spectrum Disorder, or High-functioning Autism.

I hope you will accept my humble attempt to resolve this inconvenient truth, at least on paper. I have chosen to distinguish between the man, Hans Asperger, and the diagnosis he discovered. I have put all references to “Asperger” Syndrome and its variants in quotation marks.

The challenging relationships of ASD/NT couples and families are a common theme in my writing. Now, it appears that even in the name of the diagnosis, challenges persist. I hope you find in our community a way to reconcile the painful inconsistency inherent in our group name as well as those in your life with an adult on the Autism Spectrum.