Category: Blog Posts

Dedicated to the Ones I Love

Only a few days ago, I decided that I wanted to dedicate my new websites to people I love and who have inspired my work. The obvious choices are (1) my parents for my life’s work, and (2) my daughters for introducing me to Autism Spectrum Disorder. While countless others helped along the way, sometimes with gentle prodding, soaring speeches, probing discourse, deft editing, and at times painfully searing criticism — it just makes sense to dedicate these two new websites to those I hold dearest in my heart. Love is like that isn’t? It’s a guiding light that shows us the way to our authentic expression of Self.

When I presented this idea to a few friends for feedback, I was never so surprised when a close friend said, “I wouldn’t do that. It’s too personal. You want to remain professional, don’t you?”

I was taken aback until I realized that he may not understand the “Life of the Personal.” I first learned about this important developmental stage, after the events of Sept. 11, 2001 awakened me to the fact that I needed to take my life more personally — and I haven’t looked back since.

Below is an edited excerpt from my book, WHEN EMPATHY FAILS: How to stop those hell-bent on destroying you,  where I introduce you to my Empathy Dysfunction Scale (EmD Scale). The book and this blog post are personal and YES! I meant to write them this way. Please take your time to read and absorb all of this, because the bottom line is that if you want to take back your life, and to live it as fully as you can, then you have to take your life personally.

It’s about Waking Up.

“At first the awakening was just emotional, not personal. I knew that something wasn’t right in my world, but I didn’t fully understand what it was I needed to change.

“The catastrophe in New York frightened me and propelled me to take action, but it was action without a plan. Filing for divorce was my first action step. I finally had the courage to break out of a destructive marriage. But this still wasn’t personal; it was an action to move away from someone, a way of life that was not safe for me. There still was no proactive plan for my life.”

It’s about being Strong.

“I got an inkling of an idea about my life of the personal when I spent three days in the county jail, following my first false arrest. The obvious is that I recognized it was not going to be so easy to divorce a divorce attorney in a legal system where he held all of the cards. I needed to learn how to stand up for myself and quickly before I lost everything. Not so obvious was the lesson I learned from a tiny pamphlet left in my jail cell by volunteers from Catholic Charities.

“Desperate for something to distract me from my plight (and my migraine headache) I read the story of the suffering of Mother Mary as she watched her son Jesus carry his cross to Calvary where he would be crucified. I literally wept with Mary as she described her feelings of anguish, fear and anger. . .but held strong her resolve that the son she bore would die for something far greater for all of us.

“What does Mary’s story have to do with the personal? At that first “visit’ to jail, I could definitely relate to a mother’s suffering, but it would only occur to me later how much a mother may be called upon to sacrifice. As the years rolled by and I was sued and stalked and defamed and arrested again. . . as first one daughter left me, then the second, I learned more about the life of the personal. It is actually a source of strength.”

It’s about Radiant Empathy.

“Taking one’s life personally means to realize how incredibly important you are. You were born to be You in every way possible. You are an amazing, one of a kind Soul and with every step you take you walk on hallowed ground. There is no way any of us can truly understand the enormity of God’s plan, but to know you are loved is enough. Mother Mary knew this, which is why she could be strong for her son and all of the rest of us who weep at her feet.

“In other words, the action plan for taking your life personally is to relax and know that you are an instrument of God’s love for you. Throughout this book you will see me ignore this knowledge, struggle to control the outcome. . . and fail repeatedly, even though I had this lesson early on in my fight against injustice.

“I am still learning to take my life personally, to enjoy the beauty of life and to count even adversity as a blessing. (After all, adversities drove me to write this book).

“Regardless of what I said on the radio following 9/11—and with Mother Mary’s help—I think I finally understand the lesson of living the life of the personal. Because only YOU can do it. Living personally is to do everything you can as the God creation that you are . . . and then do a lot more. That’s what I call Radiant Empathy (EmD-5).”

These realizations led me to discover the connection between Empathy and Empathy Dysfunction (EmD). The only way to appreciate this discovery is to take it personally. It is in the Life of the Personal, that we find the resilience to solve the problems we encounter with those having EmD. And it is through that resilience that we can achieve Radiant Empathy.

TO MY PARENTS: Coming of Age in the “Greatest Generation”

TO MY DAUGHTERS: Love in the Chaos of Autism (coming soon)

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.