“Asperger Syndrome” isn’t a label. It lights the way.
“I like criticism. It makes you strong.” –LeBron James
I started a movement.
“Don’t be distracted by criticism. Remember, the only taste of success some people have is when they take a bite out of you.” –Zig Ziglar
had no idea when I first wrote my book, “Life with a Spouse or Partner with Asperger Syndrome – Going Over the Edge?” that I would engender such animosity that my publisher almost quashed the release. Unbeknownst to me at the time (2009), the editorial Board of AAPC were having a hot debate about whether the book would create hostility among the NeuroDiverse population. Many Board members deemed the book too controversial.
But the owners of the company, Brenda and Keith Myles, believed in me. They built in a fail-safe by having a popular autistic author and professor write the foreword. Stephen Shore, Ed.D. drafted a supportive document that all could accept. While he praised my work, he also stated that many on the Autism Spectrum would have no need of the book if they already had successful relationships. Keith and Brenda hoped his comments would help soothe the critics.
It took a few months after publication for me to learn how hot that debate was, and after some of the hateful criticisms started to spew into my inbox and post to my website. Behind the scenes on private forums such as “Aspies For Freedom,” there were whole pages of dialog amongst those who were offended by the book. They plotted ways to take my book out of circulation and to spread the word that I was diabolical to dare to write such “trash.”
My first clue that these malevolent forces were getting anywhere with their plot was when one of my followers, an ASD man in Britain contacted me. He wrote that he wanted to buy the book but that he couldn’t afford the $200 price! What? I checked Amazon.com (also Amazon.uk, Amazon.au, and Amazon.ca) and amazingly enough the price was astronomical. It took months to get Amazon to fix the sabotage since they didn’t believe that my book, by an unknown author was actually causing this furor. For example, as soon as Amazon corrected the price, the saboteurs would change the release date, or bounce the price back up again. Eventually someone at Amazon finally accepted the reality that the controversy was real and fixed the problem for good.
But I have to tell you that this didn’t stop the attacks from flooding in. Even my ex-husband Howard (Marshack) was chagrined. He threatened to sue me for liable if I so much as implied he is autistic. As shocking and painful as these attacks were, I realized that they were an indication that I had an important story to tell. I couldn’t make these people this mad, if there wasn’t some truth in what I was saying.
I can’t say that these threats didn’t shake my confidence though, but the way I dealt with that was to lean in. I started a newsletter on the topic of “Asperger Syndrome” & Relationships. Next, I sent out an invitation for a monthly lunch meeting through Meetup. People read the book and the newsletter and wrote back to me. More and more people started attending the lunch meeting. Eventually, I was hearing from people around the world who wanted more (more meetings, more books, more guidance for their ASD/NT relationships). I guess you could say I started a movement.
Yet the controversy continues to this day as I release the 15th Anniversary Edition of my book.
The truth has a way of being consistent.
“He has a right to criticize who has a heart to help.” –Abraham Lincoln
One reason I suspect that the book has endured, in spite of the controversy is that the truth has a way of being consistent. Many readers tell me that my stories are relatable, that they live the same life I describe in the book. They write words of appreciation and support for my work. They thank me for my bravery and that through my courage they have felt strengthened too. And these comments come from both NeuroDiverse and NeuroTypical individuals. In fact, this is what keeps me going — the fact that I am reaching people in NeuroDivergent relationships who want help restoring sanity and love to their chaotic lives.
Readers often tell me that “Going Over the Edge?” was the only book they could find at the time that helped them at all. They found books on autism, and how to parent an autistic child. They found books on resolving problems in marriage, and books on managing anxiety and depression. But my book was the first they found that reflected the conundrum of NeuroDivergent relationships — and how to heal. They even reported that they carried around with them their dog-eared and highlighted copy of the book to read again and again.
NeuroTypicals especially felt affirmed, but many NeuroDiverse folks wrote to me too. They asked for guidance on how to resolve the heartache. I remember one Autist who asked me how to “be a better husband.” Another Autist wanted to know how to resolve his guilt for having caused his NT wife such heartache. “Why do I do it?” he asked. These comments were not just heart-warming indications that I was helping people. They were challenges to take on leadership in this unheard-of field of NeuroDivergent Relationships — and make a difference — so that people no longer had to suffer in silence.
Only after my book was published did I learn that I made a personal difference for some of the members of the Editorial Board too — those who fought back against my detractors. Upon reading my prepublication proposal — only one chapter of the manuscript — one Board member wrote:
“OMG, Kathy!
Just read your chapter, it is INCREDIBLE!!!
Your words flowed, You had me in tears!!!!!
Please get this out there!!! I will help you in any way I can.
This is exactly what I had always envisioned in my head but could never put into action.
Keep up the great work and GET THIS OUT THERE!!!! WE NEED TO BE HEARD!!!
I’m too emotional right now, can’t wait to meet you. . .
Hugs, L. ”
Over the years I have received many more comments like this. They far exceed the negative criticisms. My instincts were right. Not only did I need to tell this story, but I was the one to tell it. In the telling and retelling of my story, I came to trust that I knew a lot more than my detractors. Through these confounding lives we share with loved ones with Autism Spectrum Disorder where the worlds of the NeuroTypical (NT) and NeuroDiverse collide, we can lose that trust in our deep inner knowing. We can even come to feel broken and unlovable. But this isn’t true. I hope through my words you come to trust yourself again, too.
Use the diagnosis to light the way.
“If a man isn’t willing to take some risk for his opinions, either his opinions are no good or he’s no good.” –Ezra Pound
As younger folks find their way to my books, blogs, newsletters, and online courses, those who are angry still express their concerns. I view their comments differently than I did at first, all those years ago. No longer shocked or dismayed, I realize that they are at a stage of discovery that involves resistance. After all, it can be frightening to dig into this diagnosis of Autism Spectrum Disorder, or “Asperger Syndrome.” At this “high functioning “ level, ASD isn’t defined by worldly accomplishments, but by a system of thought, a neurological organization that is atypical — and developmentally delayed.
I describe the problem faced by NeuroDivergent couples and families as a “collision of worlds.” I go into great depth in my books to describe the differences in these worlds and why they collide to produce chaos, suffering and dysfunctional relationships. You can certainly make the argument that each world is as it should be, but then how do they learn to communicate, to connect, to love?
I think the answer to this question is to get a proper diagnosis of ASD and work from there. Once you understand the basics, you are better able to build those “work arounds” that I describe in the 7-Step Interface Protocol. As long as those on the Spectrum are defensive about their Empathy Dysfunction, they can’t help their loved ones understand their system of neurological processing. Also, it is true that the NeuroTypical method is unfathomable to the NeuroDiverse if you don’t slow down and explain the details.
For example, I frequently hear from some on the Autism Spectrum that they do indeed have empathy. They complain that they are so sensitive, in fact, that they are overwhelmed by the emotional impact of others. They shut down, or wail, or get fighting mad over things that NTs would take in stride in a discussion. What these NeuroDiverse folks are missing is that Empathy is much more than sensitivity and much more than words. It is more than compassion or having a strong moral character. Empathy is the ability to regulate all of this into a flow of connecting communication that allows both sides to be heard, affirmed, and appreciated. People diagnosed with “Asperger Syndrome” do not have this ability. But with coaching they can learn to work with this limitation.
Another common complaint from the NeuroDiverse is that they are intolerant of small talk and that they refuse to lie. They tell me that this is evidence that they have a higher moral character than NeuroTypicals. Sadly, this is an example of the black and white thinking that many on the Autism Spectrum are saddled with. It is not lying to be discreet. It is not kind to ignore the subtle small talk that contributes to trust. NeuroTypicals weigh every word carefully considering who is speaking. They engage in conversation from the perspective that acknowledging and honoring the other person, is more important than being right or getting to the point.
As long as Autists do not accept the reality of their Empathy Dysfunction they cannot improve their relationships. It is a lonely world without this type of connection. How can I be helpful if I accept that Autism is just another way of thinking? Yes, this is true, but it is a way of thinking that is transactional — and it leaves out connection with your interactional NeuroTypical friends and loved ones.
When you are hurt or angry it is easy for those in a NeuroDivergent relationship to blame the psychologist who bears the news. I have been called a “bully” and “Unfit to be a psychologist” by some disgruntled folks. Instead of making me the target of frustration though, light the path to recovery with a proper diagnosis so that the Autist and a NeuroDivergent couple have a target to work with.
Empathy is more than kind words.
“Pretty words are not always true, and true words are not always pretty.” –Aiki Flinthart
Professional critics have confronted me too. Every once in a while I hear from psychotherapists and marital therapists who try a softer appeal with me. They take one of two approaches. Either they remark that I must be inexperienced in the field, or they kindly offer to expand my consciousness with new terminology.
These well-intentioned folks are often well trained but lack the perspective of what it is really like to live a NeuroDivergent life where the operating systems of NeuroTypical and NeuroDiverse collide. They tell me I am being too harsh and that softer words will make a greater impact.
For example, one therapist agreed with me that the NeuroDiverse have Empathy Dysfunction, or what I call EmD. However, she said it would be much easier for Autists to accept if I used a kinder explanation. She suggested that I explain that the NeuroDiverse have some of the traits of empathy, if not all. Further, she said, since there are many qualities that contribute to empathy, much like the Autism Spectrum itself, not all Autists possess the same empathic qualities.
She went onto suggest a number of books I might read to educate myself about her position, although she has only read a couple of my blogs and none of my books. I find it odd that controversy over my work erupts after reading one blog, not after careful consideration of my research.
But let’s take a look at this position that if an Autist may have some empathy, that it is worth noting. Of course it is, but it is not empathy. If an Autist is kind, compassionate, fair and so forth, these are wonderful virtues, but they do not add up to empathy.
Empathy is like an orchestra concert. There are multiple parts that must come together to produce the concert, such as the violins, tympani, flutes, French horns and many other instruments. The orchestra performance consists of the musicians, the conductor, the musical composition, the composer, the concert hall, the lighting, the acoustics, the audience, etc. All of these parts interact in such a way that we feel exuberant about the performance or walk away feeling let down. The performance is more than the sum of the parts of the Orchestra and so is empathy.
Empathy is alive when it is flowing between people. But in the case of NeuroDivergent relationships, the empathic energy is blocked by those colliding systems. Therefore, it makes no sense to me to congratulate Autists with kind words and even encourage them to believe a few empathic traits is a little bit of empathy. If they want to learn skills to keep the energy flowing within the NeuroDivergent relationship, they will need more than pretty words. Autists deserve the truth.
Polite and honest controversy leads to healing.
“Every human being is entitled to courtesy and consideration. Constructive criticism is not only to be expected but sought.” –Margaret Chase Smith
It is important to be courteous and considerate of others, but that’s not all. I am a psychologist too and that means I want to help people make a difference in their lives. If I am to break through the heartbreak of relationships that do not work, I must trust that the truth will heal. I also believe that those who seek my help (either as clinical clients, students in my courses, members of my support groups, or readers of my books) are resourceful enough to integrate the lessons learned so that their lives improve. Together we are a team.
Here’s an example of the difference between offering pretty words and being a team player. Years ago, when my daughter Phoebe was playing soccer in middle school, Howard and I attended one of her soccer tournaments. I loved being a “Soccer Mom” and on this warm summer day I brought snacks and drinks and my horn for tooting to their success at scoring, and even a bucket of water with squirt guns to cool the girls down after the games. But my oh my when I saw the other team run onto the field I was alarmed. The girls were taller and much more skilled. They practiced with such precision that I thought they were a much older team. I turned to Howard and said, “Oh No! We are going to get creamed!”
Howard looked at me with disdain. He said, “Why can’t you be positive?” He was making this odd comment to the woman sitting there with pom poms and wearing a mask for the team mascot (Red Wolf). You can’t be much more supportive than that.
Of course, Phoebe’s team lost 3-0. After the game Phoebe ran over to her parents at the sidelines where we sat with the other parents. Howard jumped up and loudly announced, “Good game big girl!” and gave her a hug, though Phoebe stiffened in his embrace.
Phoebe looked at me with a questioning look. I read it correctly. “Well Phoebe, you were kinda outmatched by that other team. In fact, I think you and your teammates were scared at first, especially when they scored three times on you in the first half.”
Phoebe nodded and seemed to brighten. “Yes, it’s true. I think maybe I didn’t do as well as I should because I didn’t eat my banana before the game,” she offered tentatively.
I smiled at my dear daughter. She was taking responsibility for her part in the outcome of the game. Doing a little problem solving on her own is a good thing. “You know what else Phoebe?” I said.
“No what?” she asked.
“When you came out in the second half, I bet you weren’t scared anymore. In fact, you kept the other team scoreless throughout that half. Isn’t that amazing? When you no longer had a chance to win, do you think you girls stopped being afraid?”
Phoebe’s face lit up with happy recognition of the problem solved. And I got to see one of her famous smiles. “That’s it Mom! I wasn’t afraid anymore — and I ate a banana at half time!”
Laughing with my daughter. “I quite agree. Bananas conquer fear!”
There is no doubt that Howard loves his daughter and that he wanted to give her a bit of “positive” feedback and kind words after the game. But his words fell flat because he lacked empathy. On the other hand, my words connected with Phoebe because I gave her honest feedback and spoke with respectful consideration for her ability to take on her own problems. She heard my love for her. She felt my love for her. And she reciprocated her love for me. That’s how empathy really works.
Thank goodness for 15 years of controversy.
“I like criticism. It makes you strong.” –LeBron James
Never fear controversy. It makes you stronger, as LeBron James suggests. As a result of the last 15 years of controversy since publishing my first book on “Asperger Syndrome” & Relationships, I haven’t been able to rest on being nice or kind or even truthful. I have had to rethink everything I have believed and been taught.
The controversy that I have faced over the last 15 years has quickened my step. It helped me to examine empathy in depth so that I realized that Empathy is More Than Words. This realization led me to the discovery of the Empathy Triad, Empathy Dysfunction, Radiant Empathy, and the Map of Empathy Territory.
Facing angry and real threats from those who wanted to stop my work has also helped me to realize that pretty words are not empathy either. NeuroTypicals and NeuroDiverse both value the truth over pretty words. Knowing what you are up against takes the mystery away from NeuroDivergent relationships. Reducing the mystery eliminates fear. Out of this realization I developed the 7-Step Interface Protocol, a ground breaking tool to bridge the confounding worlds of NeuroTypical and NeuroDiverse – fearlessly.
I hope you enjoy reading my new book, the Anniversary edition of Going over the Edge? More importantly I hope it helps clear up the mystery of your life and leads to the healing you deserve.
