“ASPERGER SYNDROME”: What’s in a Name?
“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
What’s in a Name?
“Asperger Syndrome,” Autism Spectrum Disorder, High Functioning Autism? I have been conflicted for a long time about what to name our group. Unlike Shakespeare, “Asperger Syndrome” is not a rose. Nor does it smell as sweet by any other name. Not only is the disorder complex, but the name itself is rife with controversy (political and clinical).
Eventually I settled on the name for the website, ASPERGER SYNDROME & RELATIONSHIPS: Life With an Adult on the Autism Spectrum, for reasons practical, professional and personal. The name does matter because this website is a beacon to those who need the support. I wanted a name that could be easily recognized and that represents what our group stands for. To know that you are not alone, and that your voice matters — well, this is huge for the Neuro-Typicals (NTs) who seek us out, and join our community.
- 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 term.
- The Professional Reason? I have published three books using the term “Asperger Syndrome.” My work as an author and psychologist is associated with this term. Plus, many mental health professionals still use the term for similar reasons.
- The Personal Reason? For over 25 years using the term “Asperger Syndrome” has helped many of us NTs be more supportive of our ASD oved ones, because we could see them differently than “garden variety” autism. The term helped distinguish those with High Functioning Autism as unique and capable in many ways. Even those on the Autism Spectrum embraced the difference and coined the term “Aspie” to set themselves apart.
The Lesson of the Self-Portrait—Relationships
While the term “Asperger Syndrome” is an important part of our membership 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 by my daughter Bianca when she was a young teenager; an assignment for school to draw her self-portrait. Bianca has “Asperger Syndrome.”
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. But it was the stunning message behind her drawing that broke my heart.
“How do you like the bats flying out of my nose?” Bianca asked. It was only then that I recognized the disturbing message in her self-portrait. Not just a noisy creative brain, but a frightening cacophony of wild, angry, primitive animals. What I 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, such as an Orca breeching, a flower and a butterfly; apparently a little calm in the jungle of her mind.
The incredible depth of Bianca’s self-awareness is revealed in how she etched her hand. The fingers are intelligent animals (dolphin, horse, wolf, and hawk)—but her thumb is a woman, wearing a long cloak from head to toe. The opposable thumb distinguishes her as human, but her humanness is still shrouded.
As if my mother’s heart needed even more to ache over, I noticed a small figure of a girl, hidden among the wilderness of her mind/drawing. The girl looks frightened and alone, as she hugs her knees to her chest, and huddles beneath the tail of an iguanodon, with a ferocious plesiosaur swimming by. How did I not know that my beautiful child felt this alone and in danger?
Given the personal nature of Bianca’s drawing, I asked my NT reader 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 is that our group name has to include this important concept—Relationships. It is through the Complex Relationship between the NT and our “Asperger” loved ones, that we come to know ourselves at a deeper level. As my reader recognized, his efforts are of value. He does make a difference. With his request for a copy of Bianca’s drawing, he has started to take back his life from the chaos so that he can appreciate the radiant Soul within.
On April 19, 2018 the New York Times (https://www.nytimes.com/2018/04/19/world/europe/hans-asperger-nazis.html) published findings showing that Dr. Hans Asperger was a Nazi sympathizer during WWII. As an Austrian pediatrician he made an important discovery in the field of autism, that there are children with high functioning autism. Later this diagnostic category was given his name, “Asperger Syndrome.” As important as this discovery was, Dr. Asperger also helped identify children that the Nazi’s deemed defective, referring these children to the Third Reich’s child-euthanasia program.
The term “Asperger Syndrome” has become widely accepted in common parlance, so it is not easy to replace. My books were written prior to this discovery about Dr. Asperger. For revised editions, my publisher AAPC (Autism, Asperger Publishing Company) has asked that I remove the term in my books where it is convenient to do so. In order to maintain continuity for readers, I continue to use the term, interspersed with ASD, Autism Spectrum Disorder, and High Functioning Autism. Therefore, the terms “Asperger Syndrome,” “Asperger’s,” and “Aspie” remain on some pages, where to change them would cause too much confusion.
I hope you appreciate the sensitive nature of this discovery about Hans Asperger. As with my books, I made the tough choice on our website to keep using the term. However, I have made every effort to substitute other terms where they fit (i.e. ASD, Autism Spectrum Disorder, High Functioning Autism).
I hope you will also 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 italicized and put in quotes all references to “Asperger Syndrome,” and its variants.
I have often written of ASD/NT couples and families, that these are very challenging relationships. It appears that even in a name, the challenge persists. I hope that you find in our community a way to reconcile the painful inconsistency inherent in our name, but also the painful inconsistencies in your Life With an Adult on the Autism Spectrum.