Beautiful Chaos of an Autistic Mind

Beautiful Chaos of an Autistic Mind

Memories of a dream long ago.

Every mother has a photo like this one — snapped on the fly at a water park – a little fuzzy – but bringing back the memories of childhood innocence – memories of a dream long ago — and the joy of a mother remembering.

August 10, 1997, is the date stamp on the photo. My daughters Phoebe (age 7) and Bianca (age 10) posing for a split second before they squeal with laughter and dash back to the water slides.

I remember this day very well. We were travelling to Glacier Park in Montana when our Winnebago broke down. We were in a small town still west of the park so services were slim. As Howard searched for a repair shop, I suggested to the girls that we find a donut shop. Bianca looked out the window of the motor home and noticed a police car near-by. She said, “Hey Mommy, let’s ask the police officers. They always know where the donut shops are!”

As I look at her sweet picture I am smiling as I remember her adorable conclusion (based no doubt on some television sitcom she watched). At the time I said, “I am sure they do know Bianca, but let’s not bother the police. I bet we can find a donut shop soon enough if we just walk around.”

We found something better than donuts – the water park. With snacks and drinks and water shoes, we made a picnic while we waited for Daddy to come back with a repaired camper. The girls and I splashed our way through the park multiple times. It was a glorious summer day in the foothills of the Rocky Mountains. What could be a better memory than this?

Beautiful Chaos of Bianca’s Mind.

I have another mother’s memory from a few years later – this one is darker but just as precious.

Bianca sat on the window seat in my home office, drawing on a paper tablet. This was a common sight. Bianca loved to draw, so I let her be in her contemplation, while I sat in front of my computer composing a work document.

After a while I was curious though, so I took a peek at her drawing and noticed a bird wing drawn in the far upper right corner. I was always astonished at her ability. Even at age 14 her drawings were sophisticated, intricate and meaningful. I asked her, “How do you draw the whole bird Bianca? I mean, if you start with the wing on the corner of the page, do you already see the entire drawing before you complete it?”

Beautiful Chaos of Bianca’s Mind

Bianca didn’t look up from her drawing. She continued with her pencil and said, “Yes. It’s in my mind.” Drawing, drawing.

“I love it,” I said. “Can you draw anything you want to?” I asked. I was making an effort to have a conversation, to show my daughter that I admired her. I was excited by her talent.

This time she looked at me. “I can’t draw real things. Only stuff I make up,” she said. Then she returned to her drawing. Nothing more. Drawing, drawing.

When she finished her art work, Bianca explained that it was an assignment for school. At that time, she attended an online school for exceptional children. She asked me to scan her drawing and upload to her teacher. Fortunately, since I scanned the drawing I could save it. I asked Bianca, “May I make a copy for myself? It’s a beautiful picture and I would like to hang it on my bookcase near my computer.”

“Sure,” she said and shrugged her shoulders. Then she left my office to get a snack. My conversations with Bianca were always like that. She never extrapolated. If I didn’t ask a question, she didn’t go deeper. But we went deeper later.

A couple of days later she came into my home office again. I turned and smiled at her and said, “I just love this drawing Bianca. It is amazing.” I was filled with love and pride for my daughter and I wanted to share those feelings with her.

She said, “How do you like the bats flying out of my nose?” No emotion.

However, I had emotion. I was so startled by this comment that I turned quickly toward the drawing and exclaimed, “What?!” Then I swiveled back to Bianca and looked for an answer in her face, “What do you mean Bianca?”

I hadn’t noticed the meaning of her drawing before. I hadn’t seen the intricate weaving of the pictures. I hadn’t gone deeply into the drawing to see the mind and heart of my dear daughter.

Without skipping a beat, Bianca answered my question. “The assignment was to draw a self-portrait, Mom.”

Now as I looked at her drawing, I noticed and my heart leaped into my throat. I saw the snakes come out of her nose, and the bird screeching in her ear. I saw animals howling inside her head. I saw a jungle filled with plants and animals and symbols of the beautiful chaos she lived with. Still does live with as an autistic woman.

I wanted to hug her, to console her, but also to praise her for her insight and courage. In fact, over the years this drawing has meant much to many people who have seen it in my book, “Life with a Partner or Spouse with ‘Asperger Syndrome’ (ASD): GOING OVER THE EDGE?” One reader told me that he used the drawing as a screensaver on his computer, in order to be reminded of what his ASD wife lives with every day.

Memories and Drawings are All That is Left.

Bianca is 37 now. Phoebe is 34. Many birthdays have been celebrated since those early years when I was a young mother joyfully splashing with my children at the water park or proudly taping a child’s drawing to my bookcase. I haven’t seen Bianca in 18 years. For Phoebe it has been 11 years. Never in my wildest dreams could I have imagined that my dear daughters would find our relationships so difficult that they would soothe their pain by cutting me out.

I loved them both so much and still do. But the love is convoluted these days. I don’t have the joy of remembering as other parents. Nor can I share the amusing stories with my daughters or my grandchildren the way other mothers do. I long for those moments when Bianca or Phoebe says to me, “Oh Mom! Please don’t tell that story again. It is so embarrassing!”

I tell the stories anyway – in my podcasts and blogs and blooks – because to tell the stories again makes the love grow stronger. It’s the love that helps me endure the loss and gives me the courage to reach out to others in similar families with autism.

My daughters (both of them) carried the burden of the chaos of our NeuroDivergent family. Bianca tried to warn me about the chaos with her incredibly insightful drawing, but I didn’t fully understand. I hope she knows I get it now and that I am here for her. I am here for both of my beautiful daughters and I need them both too. We can help each other heal by making new healthy, honest and happy memories together.

Retelling the story.

The most recent retelling of the stories of our lives together is published in the Anniversary Edition of “Life with a Partner or Spouse with ‘Asperger Syndrome’ (ASD): GOING OVER THE EDGE?” This time I don’t disguise the stories as I did back in 2009 (the first publishing). Not only do I admit that I am the main protagonist, Helen, but I finally acknowledge Bianca as the book cover illustrator.

Retelling our stories has been no less painful than the first time around, I have to say. But I do have that warm and cozy feeling of remembering with the ones I love. I hope they can feel it too.

Going Over the Edge

15 Years of Controversy

15 Years of Controversy

“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.

Autistic Women: The Lessons They Can Teach Us About Sensitivity and Empathy

Autistic Women: The Lessons They Can Teach Us About Sensitivity and Empathy

The autistic woman is a woman first.

I watched Pris (Priscilla) run excitedly across the room from the stage to an audience member ticket holder, enjoying her duty of checking the lucky winner’s raffle ticket. She’d read the ticket aloud and if it matched the number held by the announcer on stage, she would squeal with delight and say, “Oooo! We have a winner!” She would wait for the applause and then with a ceremonial flourish, hand the prize to the happy winner. Then audience members would ooh and aw over the winner’s prize and their good fortune.

Pris was having a wonderful time, if the flush on her cheeks and the bounce in her step were any indication. And she didn’t stop running back and forth with each raffle ticket announced and claimed. The audience loved it too. Even though we all checked our tickets for a possible winner — and even if the prize went to someone else — the excitement grew because Pris infused us with her joy. We all felt like winners to bask in the open heartedness sunshine of this woman who gave people the gift of her giddy joy.

The joy was interrupted for only a moment, but it was powerfully disrupting. A person in the audience yelled out for all to hear: “Well you don’t see that every day! My wife is running across the room.” Pris’ spouse, Donny looked smug as he surveyed the audience and laughed. His comment caught Pris in mid-air and she landed hard on one step. Looking startled, Pris turned toward her husband. As she caught his eye, she laughed a silent laugh — the kind of laugh that is not really a laugh — and then started running toward the stage again. But I wonder, I wonder what she was thinking at this micro-aggression by Donny. And I wonder if he caught her look, or the fact that the rest of us picked up on the unkind comment. The room was silent for a moment, with Pris in mid-air and that silent laugh. Then we all drew a breath and returned to the fun.

The next day Pris came up to me at breakfast and confided that she suspected she was Autistic. She said, “I hope you don’t mind that I Googled you, but when I heard you use that term, “NeuroDivergent” — a word I had never heard before — I had a feeling I should learn more. I can’t believe it but at 58 I am finally figuring out who I am!”

I smiled and assured her that I didn’t mind. Even though we were attending a weekend charity fund raiser — when it comes to this topic — I am never off duty. People seek me out because it is a relief to know — to know who you are after so many years of living a NeuroDivergent mystery.

“Of course I don’t mind Pris. I am happy to help.” Then I waited, waited for the characteristic NeuroDiverse pause, as the Autist finds her way into the conversation.

Pris was full of questions about how to get a diagnosis and where to start in therapy. Then a really big pause. I waited. “Well, you know that my husband is a psychologist and the director of several clinics in town don’t you?”

“Yes” I answered. I waited.

“Well, why hasn’t he ever suggested this to me — you know that I may be NeuroDiverse? Shouldn’t he know these things, especially if it could help his own wife — and us?” She didn’t look hurt, but she was puzzled. She obviously had registered Donny’s microaggression from the night before. And she was aware of a pattern of relationship problems that caused suffering for both of them. It’s logical to ask her question, but the answer isn’t simple.

I needed to tread lightly in a personal situation between husband and wife, especially since they are not my clients. But I didn’t want to leave her hanging with such a life changing awareness. “Well, you know Pris, it’s not easy even for us psychologists to peer into our inner workings and examine our loving relationships. And then there is the fact that your husband probably never studied high functioning autism in graduate school. But now that you know, you could take the lead.”
Before I could finish the last sentence, Pris was impatient to leave. “I’m running late and Donny will be angry with me if I am late. So, we can talk later, OK?”

“OK.” I said and put the incident at the back of my mind to percolate.

Eventually what percolated to the top is the vision of Priscilla’s happy face, radiating that sunny glow, as she ran among the audience members checking raffle tickets. She was genuinely happy to help with the fund-raising effort. She was also deeply puzzled by her spouse’s ridicule. I am not sure if she recognized the ridicule consciously, and Pris tells me that she can’t read between the lines, but it was enough of a microaggression to register later. Later, when she wanted to share her discovery that she is autistic, she also revealed that she lacked the empathy to quickly track what is going on in conversation. She opined that this Empathy Dysfunction (EmD) may be the underlying reason her marriage was so oppressive.

Even with EmD, Pris is a sensitive, loving, big-hearted woman. When she gets into her emotions, and is truly enjoying herself, everyone around her is happier too. When she feels the intense emotions of others (such as her husband’s negativity) she is startled and struck dumb. Good for her, that she only took a moment to feel the verbal abuse, and then returned to her delight in the raffle process. But there are only so many times that a beautiful soul like this can take these comments and still survive. I have seen this many times, when sensitive ASD women do not know how to assert themselves.

The lesson I learned from Priscilla is that even though she is an autistic woman, she still wants what most women want — to be heard, to connect, and to be loved by their partners. Priscilla has abundant sensitivity without a way to balance it with the skills to manage a relationship with a strong-willed NeuroTypical. And like many women, her curiosity about NeuroDivergence will most likely be the impetus to resolve the couple’s relationship problems. She is a woman on a mission now that autism is no longer a mystery.

The autistic woman is a woman first.

Unlike Priscilla, Anna gets fighting mad right out of the gate. She is autistic and aware of being misunderstood. As she wrote to me on a blog post entitled “Can Autistics Lie?,” she wrote “. . .I am so sick and tired of this stereotype that autistic people don’t feel and aren’t capable of empathy.”

She goes on to write, “If anything I feel too much, too intensely. I can express my feelings and emotions better than my neurotypical boyfriend.”

Anna’s sensitivity is obvious. Empathy — not so much. She mistakes her sensitivity for empathy. And she mistakes a lack of empathy as having no feelings. In an effort to get around her defiant response, and offer a more positive perspective, I wrote back.

“Thank you [Anna] for your candid response to this blog. First, it is certainly no shame that Autists do not have empathy. It is just a neurological detail. With Alexithymia there is a delay between cognitive and emotional processing, so the resulting lack of integration is Empathy Dysfunction. For example, when you mention that you “feel too much, too intensely,” this is an example of Alexithymia. The intensity of emotion that has nowhere to go is problematic. NTs can regulate the interaction of emotional and cognitive elements as they go, whereas those on the Spectrum need time to process before they can make sense of what is going on for them, or others.”

Anna showed even more defiance in the second half of her written comments (and before receiving my response). “I also do not lie, not even when it would benefit me to. People get offended by me sometimes because I’m too honest. It is completely offensive to compare autistic individuals to psychopaths. Autistic people have a moral compass and sense of social justice.”

I don’t blame Anna for being angry and even her defiance is a strength — one that is good to have if you are a woman with autism who is frequently misunderstood and gaslighted (as Pris experienced with her husband). Just as sensitivity is not empathy, and defiance does not define a sense of justice, Anna needs help facing the inevitable collision of worlds that is a result of NeuroTypicals and NeuroDiverse interactions. I tried my best to help her understand these basics of human nature in the next part of my response.

“As to the lying, it is quite characteristic for those on the Spectrum to lie about totally inconsequential things, not just the big stuff. The lying is probably a masking or PTSD reaction to the Empathy Dysfunction. When an Autist has spent a lifetime covering for their lack of emotional integration (i.e. not understanding what is being discussed, or over-reacting/under-reacting emotionally) often they have learned to get by socially by fibbing.

“In some ways it is admirable that you pride yourself on never lying but the fact that you mention that people get “offended” because you are “too honest,” is an indication that you are not quickly recognizing the social cues. These social cues tell the rest of us when to speak up and when to be silent or when would be the best time to finally “be honest.” This is not to say that NTs are better at being honest. For sure, lying is a common human trait. But being “too honest” just means that you are not reading the intention of the moment — empathy enables us to read the intention in the moment.

“Sick and tired” of hearing that Autists lack empathy is certainly understandable and I feel for those who struggle with empathy. But if the NeuroDiverse are to find new ways to communicate with their NeuroTypical sisters and brothers — and vice versa — then it is important to deal with reality. Just because an Autist is slow to pick up the nuance of the moment or appears abrupt or too harsh — or just because NTs rattle on with what appears to be irrelevant chit/chat — doesn’t mean we should judge each other harshly. These differences should give us pause to pay attention to the inner world of the other. Instead of worlds colliding, we could try to create complementary worlds.”

I may never know if Anna changed her mind. She did write one more time, stepping up the vitriol. She wrote, “She’s [Dr. Marshack]a bully. She’s no better than other neurotypicals who judge and misunderstand us only it’s worse because as a psychologist she should know better.”

You may be able to relate to Anna’s deep wounding. You don’t have to be an autistic woman, to have felt overwhelmed with distress by some wrong doing — so overwhelmed that you wanted either to crumble or lash out in defiance. Both are understandable emotional responses. Just not very productive. Certainly not effective at resolving problems between people.

The lesson I learned from Anna is that psychological wounds can run so deeply for an Autistic woman that it is not easy to let go of the anger and hurt. I thought I could send Anna a reasoned response as if her pain was not paramount. Her pain is the center of her response and needs to be acknowledged as real. Of course, it is real as it is for many women on the Autism Spectrum. Many have struggled for a lifetime to manage their distress. To get angry enough to reclaim their worth is a huge step. Anna took that step and will not be deterred. Good for her.

The autistic woman feels like an imposter.

“When I get applause at the end of a performance, I feel like an imposter!” Marlee tells me during one of her sessions. “I keep thinking that the audience will know I am an Autist and just faking it. I am teetering on depression again.”

Marlee is a singer, songwriter who came to this career later in life, after having spent three decades of her adult life thinking that all she was worth was to do menial office work. She had no idea she was on the Autism Spectrum until she walked into my office one day, seeking therapy. She had seen many therapists and psychiatrists over the years but none had recognized that this bright, creative woman was also autistic.

On our first encounter I could see some tell-tale signs of high functioning autism but I waited to hear her story. I asked her what she was looking for in scheduling with a new psychologist. She said, “I am 45 and I am at the end of my rope. I have been to psychiatrists and social workers and psychologists from coast to coast, and I am still no better. In fact, I am sick and exhausted and desperate. I know that you do hypnosis and NLP, so I hoped those techniques could help me. I am just miserable.” Marlee looked at me with fear in her eyes, as if she knew I would judge her harshly.

“Marlee, I know you are unhappy and want a new approach. I am also pleased that you haven’t given up yet. However, before we try a technique, I’d like you consider a new diagnosis that may help you better understand the troubles that have plagued you. Have you ever considered that you may have ”Asperger Syndrome”?

Marlee had never heard of the diagnosis before so I explained it. As I walked her through some of the symptoms, particularly the ones that seemed to fit her self-description of her life, her eyes widened in amazement. “What the hell!” she exclaimed. “Do you mean to tell me that no one every figured this out before, and that my life has been dangling by a thread, when there is an answer? Are you saying I’m autistic?”

I leaned into Marlee’s amazement. “Yes Marlee. I think this might explain it. I want you to read more about it and I am referring you to a psychiatrist so that he can adjust those terrible medications you have been using. Then we are going to talk some more about what to do to help you.”

The look of fear crept back onto Marlee’s face. “Are you sure you can help me? I have lived like this for so long. How does knowing about autism make a difference.?” Marlee had an ounce of hope but a ton of skepticism.

I said, “It will take us some time to unravel the beliefs and behaviors you have developed to adapt to your life. Lots of things aren’t true about you and it is time to let them go. You accepted what your parents and teachers and others have told you is the truth about yourself, but I suspect they never understand the autism that you live with.”

“I’ve always felt like an imposter, Dr. Marshack. I could never quite do things right. I was always messing up. And even when I studied the behaviors that my mother and grandmother wanted of me, I never did them quite right. Then they would scold me for not trying harder. It has been a nightmare.”

“That’s the problem Marlee. By pretending to be normal, in a way you were an imposter. You were mimicking life or what we call masking in order to fit in and belong. But these behaviors weren’t coming from the real Marlee, so you felt like an imposter. Time to free Marlee to be all that she is meant to be.”

I can’t tell you that Marlee resolved her severe depression quickly, but little by little she started to know who she really is, separate and distinct from those masking behaviors. The complex PTSD that haunts her continues to crash into her awareness from time to time, but we are working on methods to shut it down as quickly as it comes on. Even though Marlee feels like an imposter almost every day of her life, she now knows this is an artifact of the lessons she learned from the NeuroTypicals around her.

Not long ago I had a Zoom conference with Marlee. With a very serious expression she announced, “It’s our fifteen-year anniversary Dr. Marshack.” She paused and waited for my response.

I said “Congratulations Marlee. Have you and Fred been together that long? That’s wonderful.” I thought she was referring to her long-term boyfriend.

“No. That’s not it. It has been fifteen years since you first diagnosed me. Can you believe it?” She didn’t bat an eye or offer a smile.

“Oh, my goodness Marlee. Is that true? How amazing. Look how far you have come. You have written dozens of songs, have a one woman show, and an album near completion. You have finally surpassed your wildest dreams for your life. What an amazing and wonderful journey.” I wanted to help Marlee celebrate her accomplishment, not just our time together.

Marlee looked at me with a bit of sadness. “But will I ever stop feeling like an imposter?”

The lesson I have learned from my 15 years with Marlee is that the imposter syndrome is tough to quash after a lifetime of autism without guidance on becoming a person. Desperate to please and to fit in most people on the Autism Spectrum figure out how to mask by age four or five. Most of us learn a modicum of masking in order to navigate the social world, but never should we accept masking as the truth about who we are. In spite of those feelings of being an imposter, discover who you are and be the truth of who you are. The world needs your talents and your love of those talents shines a bright light for the rest of us.

Autistic women who loved me.

I have written extensively about the Autistic women in my personal life, my mother Irene and my daughter Bianca. However, it has taken a long time for me to fully appreciate how much they loved me. It was tough to feel their love because of their Empathy Dysfunction and transactional style of communication. Now, after all of these years I am coming to appreciate their love, especially after meeting so many women on the Autism Spectrum and learning of their struggles to be loved and to give love.

My mother was a practical woman. When she volunteered to manage the elementary school safety patrol program, she didn’t host parties for the kids, or hang out with us at the school crossings. Instead, she rallied the community to buy brand new equipment for the students. She wanted us to be safe so she bought us water proof reflective gear.

Likewise, my daughter Bianca was creative in her endeavors to be helpful. For example, she recommended my professional services to some of her classmates at Clark Community College, when they revealed that they had ASD like her.

I recognize these behaviors for what they are, a transactional attempt to do the right thing by someone they loved. However, these actions didn’t feel loving at the time. I could be proud of my mother’s accomplishment for the safety patrol. I could feel honored that Bianca shared my credentials with her friends. But it didn’t feel like love to me, an NT who needs to be touched and affirmed for who I am — and who would like to touch and affirm back. I needed them to hug me and look into my eyes and tell me how much they loved me.

The lessons learned from my mother and Bianca took many years for me to learn. After meeting women like Priscilla, Anna and Marlee (and many others) I gained a fuller appreciation of the experience of being female on the Autism Spectrum – and what my mother and daughter had to live with. I only wish I had learned sooner about the sweet sensitive strength and tenacity of these women, so that I could have loved my mother and my daughter better. Now I know that they held their love for me deeply in their hearts, locked up by a life of Autism in a NeuroTypical world — waiting for me to love them unconditionally.

A Love Letter to my Ex-Husband

A Love Letter to my Ex-Husband

Healing begins where the wound was made.” ~ Alice Walker, author

Love is an antidote to terror

It took me twenty years before I could write this chapter. I was so wounded by a contentious divorce from a man with High Functioning Autism (Autism 1, or Asperger Syndrome) that waves of nausea consumed me every time I thought about it. Since outlining the topic, I have had nightmares and I woke up screaming more than once. Just a few mornings ago I awoke after a fitful night of being unable to breathe. It is clearly not easy recuperating from the trauma of parental alienation.

I decided to brave my fears and write this chapter to free myself of the painful hold Howard has over me. I hate being trapped by my angst and anger. I can still condemn his actions, as atrocious to his family, but I don’t need to carry the humiliating dilemma of loving someone who is also my enemy.

Once you give your love to another person, I don’t think it really goes away. It might fade a bit, but it is still there, waiting to surface and be acknowledged. In fact, allowing the love to be felt again for Howard Marshack, a man who tried to destroy me, is what contributed to the terrorizing breathless nightmares. However, instead of backing away from those feelings, I decided to lean into them. What emerged is acceptance — and the realization that Love is a marvelous antidote to anger and terror.

Falling in love with Howard – circa 1978

I parked my Desert Sand VW a block away from the Horse Brass Pub and walked through the December slush to the front door, for the agency Christmas party. Portland winters are wet, cold and occasionally slushy from the crust of snow and ice that partially melts during the day, and freezes over at nightfall. I was prepared though. Had my warm one-button black wool swing coat, leather gloves, waterproof boots, and a sassy turquoise hand-knit wool beret holding back my long, wavy hair. It was 1978 and I was fond of the Annie Hall look1.

Inside the pub I found my way to the banquet room where the party had already started. It was a fund raiser hosted by the Multnomah County Foster Home Unit of the Oregon Children’s Services Division. I was a young social worker then, working for the Child Protective Services Branch. Everyone at the party was an employee or spouse or date of some social worker at the agency. And by the time I arrived the party was in full swing.

My admission to the party was a toy for a foster child. After depositing the toy in the collection bin, I left my coat, hat and boots at the coat room, slipped on my party shoes, and headed toward the no-host bar. There was a long line, but I couldn’t help noticing the cute bartender pouring champagne for a dollar a glass. He seemed to be drinking a glass for every one that he poured. It was clear he was having a great time.

I liked the cut of his jaw, very handsome, with a mole on his right cheek, just like a young Robert De Niro. He looked like he had just stepped out of “Fiddler on the Roof.” He had wire rimmed glasses, and wore a sporty leather “newsie” cap. His curly dark hair peeked out from under the cap. The black vest he was wearing fit snug against his torso, making him look even more dashing. And for a note of whimsy, he wore a red ribbon rose on his lapel. I could hardly keep my eyes off of him.
He graciously poured me a glass of champagne and I made my dollar contribution. I flashed him a smile and he smiled back. There was a twinkle in his dark brown eyes and he said something, but I couldn’t hear him above the party din. So, I just smiled and turned to find my friends.

I still remember this Christmas party as the best ever. We were all young twenty-somethings, and happily starting out in life. We ate pizza and drank champagne and laughed . . . so much. Most of us were single professionals, so there was plenty of flirting going on, but it was all in good fun. There were a few married couples, like Jim and Sue, and Paul and Vicki. But mostly we were young single social workers, full of idealistic energy. We had made a commitment to pursue a profession of service to the community. Low pay, hard work, and a life-long purpose. We deserved a Christmas party where we could let our hair down.

My face was flushed with champagne and laughter when Howard came to my table and asked to sit with me and my friends. It was then I realized he wasn’t a real bartender but a volunteer from the Foster Home Unit. He was a social worker too.

“Of course,” I said, and scooted to the left on the bench, so that he had room to sit next to me — very close to me. I was energized and having the time of my life.

Howard brought a bottle of champagne to the table and poured drinks for all of us. My boss Bill, and another social worker Jim, sat across the table from us, but it soon became clear that Howard and I only had eyes for each other. By then the fund raiser part of the party was probably on the back burner.

I can’t tell you what Howard and I talked about exactly. He touched my hair with his hand and his fingertips gently brushed my face, “ I saw you when you came in,” he said. “I haven’t seen you before. Where do you work?” I knew from the look in his eyes and his soft touch on my face, that he could care less what I answered.

But I answered anyway. “I just started at CPS. Bill’s my boss,” and I gestured toward Bill on the other side of the table. Bill gave me a knowing smile, but I ignored him. I didn’t think anyone noticed what was going on between Howard and I. Love is blind.

“Oh,” Howard said. “Would you like more champagne Bill?” He poured Bill and Jim more champagne without taking his eyes off of me. I wanted this man and he wanted me.

Time passed. We were falling in love. People were leaving the party. But we didn’t notice. The only thing important was the electricity of the moment between us.

Eventually, I looked around and saw that the room was emptying out. Howard noticed too. He said, “Would you like to go somewhere else? We should get some real food. There’s a Chinese place not far from here.”

“Love to,” I said. As we started to slide across the bench seat, peanuts in the shell fell from our laps. Laughter erupted from another table. A few of our friends had been lobbing peanuts at us all evening, but we hadn’t noticed. We were so “into” each other that time had stopped still.

I turned toward the laughter. Sue lobbed another peanut, just to be sure I knew it was her. Then she said, “Have fun tonight, you two.” We all laughed.

It was the best night of my life with Howard.

Sweet moments – few and far between

I realize now that Howard loved me. That’s why he has never forgiven me for leaving him. As an autistic man, he has no way to explain our rift. He loved me in his own way, a way that seldom reached me, but he felt the love — deeply.

I remember the way we held hands when we walked together. I would put my hand into his and he would gently slip his index finger between my pinkie and ring finger as our thumbs linked.

He used to call me “Kath” — on the rare occasion he called me by name. When I heard him use my name, I felt loved. It wasn’t often, so this makes it all the more precious in my memory.

Trust was implicit. Howard trusted that I would take care of him and our family. He didn’t always like my decisions but he usually cooperated. Like a child he seemed to know that one of us needed to take charge — and that it should be me. I used to feel burdened by always being the grown up in the room, but now it feels like love. Trust is a kind of love.

I remember the day he made me laugh, and I loved him for it. I frequently complained about the way he dressed. He had no sense of style and would often wear smelly, worn-out clothing even to work (and as a professional man, an attorney, this was shocking to me). I would scold him and send him back to the bedroom to change. One workday morning he came out of the bedroom wearing high water light gray polyester knit pants showing white socks. Tucked into the pants was a red and green plaid shirt, sporting a yellow and blue Rep. tie. I couldn’t believe it! In fact, I was so stunned at this outlandish outfit, I couldn’t utter a word. I just stared. He asked, “What do you think?” I caught the twinkle in his eye and burst out laughing. “You had me going there for a minute. Where on Earth did you get those clothes?” Howard had made a special trip to the Goodwill to find this outfit. I loved that he went to all of that trouble to make fun of himself — and to delight me.

In fact, when we were dating he would send me correspondence addressed to “Kathy Eye Johnson,” teasing me about my professional signature “Kathy I. Johnson.” One day I got a white business envelope addressed to “Kathy Eye Johnson” and when I opened it, hundreds of paper punch scraps fell out onto my desk. It was cute. It was juvenile. But I loved this quirky guy and his antics made me smile.

Over the years though, Howard’s love language became tedious to me. He never grew beyond that middle school behavior. It was tough for me to see the love, to feel his love for me. Now I know this is the best he could do. I know that it was love in whatever form he was capable. I expected the love to grow and mature, but just because he couldn’t do that, doesn’t mean he didn’t love me. It’s not easy being loved this way — to have to accept the love in an intellectual way – an autistic way.

The children drove us apart

I hate to admit this but our children drove us apart. It’s not their fault of course. Howard was just not equipped to be a parent. I often say that if we had not adopted Bianca and Phoebe, we might still be married. I might have been able to grow in my acceptance of his autism and the way he loved me — in his one-sided childish way.

But the problem is that we had kids and they needed more love and attention than even I did — or than Howard was capable of. I could instruct Howard on the way to diaper a baby, or how to mix the formula. Or give him a basket of towels to fold — that he would forget to put away. I could give him assignments, such as taking a child to her soccer practice, but if I wasn’t specific, he would forget her cleats or how to get to the practice field. I could walk him through how to comport himself at a parent-teacher meeting, but I couldn’t control all of the outlandish things he would say to the teacher.

Parenting is more than following the color-coded calendar I prepared to help Howard track his responsibilities. Parenting requires engaging with the child, getting to know her, putting aside your own needs so that she feels appreciated and encouraged. Parenting is sharing the joys with your wife of helping two daughters become all they are capable of.

I was the parent who planned for the children and recognized their developmental needs. As our oldest daughter Bianca started showing signs of a developmental disorder (later identified as autism) I was the one to research the mental health and educational system for the best fit for her. As Phoebe became angrier, drinking alcohol, and doing poorly in school, I was the one to search for alternative education and therapy to keep her from emotional collapse.

Howard couldn’t fathom the complications required of ordinary parenting, let alone parenting two children with disabilities. I didn’t know at the time that Howard had Empathy Dysfunction and Autism (Emd-0). While he could do assigned tasks (when reminded) he struggled to understand the inner needs of his wife and children, so the three of us were left behind, feeling unloved and unappreciated.

After a while we no longer held hands. Howard may have tried to entertain me with his juvenile humor, but I was too busy dancing as fast I could to protect our children. I longed for those days, when Howard would rub my back at night, or send those silly messages to “Kathy Eye Johnson.” It is very tough to hang onto feeling loved by an autistic man, when he never even says it. Now I know he still felt it, but that’s not the same as giving it freely, is it?

Love is a conversation, not a transaction

I got a call from Richard Marshack, Howard’s brother when we first separated. I was surprised to hear from him since we weren’t particularly close. He said, “Howard told me that you want a divorce. He said you were not happy with the sex.”

I demurred that this was not a subject I cared to talk about with my brother-in-law, even though it was true. After the first year of our marriage, Howard showed very little interest in intimacy. Often months would go by. One time a whole year elapsed, as I tried to be patient with his excuses and fatigue. In 25 years, it never improved. I was heartbroken. How does a wife keep the love alive when her husband is not interested in sex?

Richard continued. “You don’t have to tell me about it, but I want you to know that Judy and I separated for a while a couple of years ago. I complained that she functioned at a C- level in that department, and I was sick of it. So, I moved into an apartment and started dating.” Judy is my sister-in-law and the mother of Richard’s three sons. I knew that he was tough to live with because of his abrasive personality. He also would embarrass his wife with his public flirting with other women. In fact, the first time I met Richard he walked out of his bedroom wearing nothing but his boxers even though he knew I was alone in the kitchen having breakfast.

I said, “Richard, I am not sure what your situation has to do with Howard and I.”

He said, “Well Judy begged me to move back home and so I did — on one condition. I told her that she had to do better in the bedroom or I would leave again. That scared her! She notched it up to about a B+ level so I compromised. It’s not what I want, but it is better than it was.”

“I’m not sure that would work for Howard and I. Shall I tell him you called?” I wanted to get off the phone and get some fresh air. The one thing I know about Howard’s family is that they are so transactional that I am not sure if any of them are motivated by kindness and love.

I consider love a conversation not a transaction, as Richard suggested. Love is a reciprocal knowing, sharing, and understanding of the loved one that feels precious, special. Love is not an object or even an idea. Love is dynamic energy. I felt that energy with Howard on the night we met, but it disappeared much too soon. I loved Howard very much, but I couldn’t bring myself to bargain with him for sexual favors. I suppose I stayed as long as I did for the memory of what we once had.

I failed Howard

I was very hurt when Howard became vindictive during our divorce. I’ve written elsewhere of the harm he inflicted, but I failed him too. I don’t blame myself for not knowing of his autism at the time. But this ignorance contributed to my codependency. In other words, I worked harder and harder to cover all of the mistakes and social missteps that Howard demonstrated. Most of my daily life and my children’s lives revolved around accommodating Howard.

For example, on weekends I would have to remind him to shave and take a shower and put on clean clothes. He would complain that he should get the weekend “off,” like he was that middle school child who doesn’t want to use deodorant. I would insist that he clean up since we had friends coming over, or we might be heading out to shop. Sure, it was OK to dress casually, but I would explain that it’s a common social courtesy to clean up. I would also explain that I wanted him to create a good example for our daughters — to which he retorted “Why do they care if I shave?”

No matter how much I cajoled or complained, Howard did not improve, so I just ramped up the codependency. Since he couldn’t seem to pay the bills on time, I took over the family finances. I drove the car most of the time since he was erratic on the highway and frightened me and the children. I made lists for him often using Post-It notes so that he could tack the list to the bathroom mirror, or the visor of his car. He would even carry extra pads of Post-Its in his pocket to hand me when I would make a request. “Would you write that down for me?” he would say and pass me a pad of Post-Its.

I kept using the strategies you would normally use with NeuroTypical adults, such as seeking conversation to create a win/win solution. I would paraphrase, ask for his opinion, seek a compromise, etc. But Howard never understood how to reciprocate my bids for connection. He never grew in social skills. Not understanding his developmental disorder of autism (and concomitant Empathy Dysfunction), I grew increasingly frustrated, weary and angry.

As I mentioned before Howard usually cooperated with my decisions, but when we separated I had even less control of his behavior. He became petulant and uncooperative. For example, he refused to contribute to the medical and educational bills for our special needs children. Worse, when he got angry with a child during a visit, he would refuse to let her visit again for a lengthy time. I would implore him to change his mind, but he would say, “I’m not ready yet.” How can a parent say they’re “not ready” to love and care for their own children?

I started waking up to his disability at this time of our separation. The decisions he made shocked me, but I shouldn’t have been surprised. Howard’s lack of conscience was long known to me if I had only digested the evidence earlier. For example, as a grad student in Social Work, he was pulled from a practicum because of his failure to meet standards of care for clients. Later as a Social Worker (when I first met him) and he was charged with the vital responsibility of supervising children in foster care, Howard bragged about how he had coffee and donuts with foster home parents but never met the children. Why didn’t he know this was wrong?

I can still hear his complaint when I asked him to take his own children to visit their grandfather in southern California. We were separated at the time and Howard had yet to take the children on a vacation or even a weekend excursion. I said, “Why don’t you take the girls with you to visit your father when you go this time? They don’t get to see their grandfather very much. You could even take them to Disneyland for a day.?” He stopped me cold with this response, “I don’t want them ruining my vacation!” I was speechless, utterly speechless.

But Howard’s transgressions are not the reason that I failed him. By growing codependent, I failed to set clear boundaries of conduct and care. In fact, I became such a super hero, that when I finally crashed and burned — when I just couldn’t carry the load any longer, Howard felt justified in blaming me for nearly everything that had gone wrong for us. He was so used to me handling it all, that when I stopped, it never occurred to him to pick up the slack. Since I was the only adult guiding Howard, he had no one to confront his immaturity. Sadly, there were plenty of people surrounding him encouraging the worst. And our whole family suffered accordingly.

Healing the wound

Alice Walker wrote, “Healing begins where the wound was made.” There’s a lot packed into this message, a lot more that I will need to unpack over time. For now, the healing is three-part. First, forgive myself for not knowing about High Functioning Autism (Autism 1 or Asperger Syndrome) at the time I was living in a NeuroDivergent marriage. Goodness knows I asked for help from therapists and doctors and read many books. But I just didn’t realize the system was rigged. My empathic skills were no match for Howard’s transactional mind set (and professional training as a win/lose litigator).

Secondly, I can accept that Howard did love me and I can forgive him for not knowing any better how to be a better husband and father. He has done a tragic disservice to our family, but he doesn’t know any better either. I don’t think he meant to be so destructive. I suspect he doesn’t believe he has been, but if I am to heal, it is important to place the responsibility where it belongs. He tried to destroy me and our daughters, whether he believes it or not2.

Thirdly, I spent decades of my life enmeshed in codependency, trying to “fix” a man with autism, instead of accepting him as he is. If I had let go of all that goes with this codependency — the shock, the hurt, the rescuing, the anger — I might have spared all of us the years of suffering, or at least given room for each member of my family to discover their divine nature.

This is true for all of us who face overwhelming relationships.

  • Take responsibility for your part in the problem.
  • Give responsibility to the other person for their part.
  • Let go of trying to fix anything, especially the other person.

Yes you may still need to set firm boundaries — and maybe even leave a relationship that is dangerous for you — but love is what heals all wounds, especially your own. Never deny it. I loved Howard deeply in spite of the tragedy he caused my daughters and me. It wasn’t wrong to love him. It was a gift — the gift that comes from God. I will treasure those moments of love that I shared with Howard because now I understand that tragedy does not destroy love.

Even in your grief, remember that Love is your super power.

——

1. Annie Hall is a 1977 Woody Allen movie, staring Diane Keaton as Annie.

2. For more on the specifics read my book, WHEN EMPATHY FAILS: How to Stop Those Hell-Bent on Destroying you.

Only You Can Know Your Duty

Only You Can Know Your Duty

We are the world
We are the children
We are the ones who make a brighter day, so let’s start giving
There’s a choice we’re making
We’re saving our own lives
It’s true we’ll make a better day, just you and me
~ 1985 lyrics to “We Are the World” by Lionel Richie and Michael Jackson

My song.

I was startled out of a dream by the sound of an amazing orchestra with a chorus of backup singers, singing the famous Michael Jackson song, “We are the World.” I was in the spotlight on stage, singing too, but the words I was singing were different.

Only You can know your duty.

Only You.

No one else.

Only You can know your duty.

 

I don’t usually forget powerful dreams like this one, but apparently I did until last Saturday. On that day, I opened my iPad to pull up the New York Times, a habit I have each morning. I like to start my day by checking the news and maybe a few emails or texts, just so I have a handle on what happened during the evening, and what is coming up for the day.

What came up — out of seemingly nowhere — was a handful of emails I had sent over five years ago, including one about the dream that I had sent to my minister. He was impressed and suggested I record the song before I forgot. I meant to, but I got busy with other things. Isn’t that the way with human beings? We can be awakened by a potent message and then toss it aside in the busy-ness of taking a shower and looking for the right scarf to wear with that sweater — and matching earrings too!

This time though, I paid attention. On Saturday, five and a half years after I sent this email, why on Earth did it pop into my feed today? Plus, there were other emails too — all from that time period — reminding me of something very important — but what? So, I read every single one of them and the pieces started to fall into place.

My email.

I was shocked as I read the emails I had written to my cousins all of those years ago, warning them of my concerns for one of their siblings. Why was I shocked? Because I was reminded that I had tried desperately to warn the family of the tragedy that lay just around the corner. 

I sent these emails just days after returning from an out of state visit to a part of my extended family which was supposed to be a joyous celebration of the birth of a new grandbaby. Even as I held and admired the new baby, I struggled to contain my disbelief when I saw my dear cousin. The deterioration was intense. B– was morbidly obese, with pockets of fat skin spilling out of their shoes. They could hardly walk through the doorway. Although I intended to visit at B—‘s house too, the rest of the family advised against it because their house was an “awful mess.” 

I listened and watched and thought during that trip. I hadn’t seen B— in several years, so I hadn’t witnessed the disintegration of their health — and their life. But now it was obvious that B— was suffering and needed protection. I spoke privately to one of their siblings but got the brush off. Not quite denial but more an excuse that their hands were tied since “B—wouldn’t listen anyway.”

When I got home from the trip, I sent an email to the other siblings suggesting that B— was in “life threatening danger.” I listed my concerns specifically, not just about the obesity (about 400 pounds on a small-framed person), but also about the possibility of hoarding (i.e. the “awful mess” at their house), and a host of other symptoms that appeared to be autism to me. I considered it urgent that B—‘s family get on board. I suggested an intervention if B–  wouldn’t voluntarily seek professional help.

The responses I got back were painful enough the first time but excruciating on Saturday. All of the responses were defensive and nasty. 

  • The first response denied even the obesity (i.e. they “just need a good diet”).
  • I was accused of conspiring behind my cousin’s back. 
  • I was told that it was unethical to diagnose a relative.  
  • My professional standing was belittled (i.e. “You think everyone is autistic”).
  • They even went after me personally (i.e. “Just because your family is a mess, don’t come after ours”).

More emails four years later.

Why was it so excruciatingly painful to read these emails many years later? Because four years after I sent them, my dear cousin was hospitalized, near death, in a coma.

Here’s the short story. After not hearing from B—for a few days, a couple of family members went to their house. Amid the filth and the flies and the stench of the out-of-control hoarding, they found B— huddled in a corner, hallucinating and terrified to move. In the hospital they were diagnosed with encephalitis and place in an induced coma. The recovery was slow but after several weeks, they were transferred to a nursing home, and later assisted living. There was more than one incident of decompensating while under medical care — each time followed by a miraculous recovery. B—‘s home was stripped and disinfected — and sold in order to provide for their medical care and living expenses. They lost all of their belongings, including family heirlooms that had been entrusted to them by the family.

I called and texted and offered my help to this part of my extended family. They seldom responded, or  only sent a brief text of “thanks, we got this.” But they didn’t. They still were in massive denial about B—‘s problems. Yes they now accepted that a sweet life was in danger, but they could not accept their complicity. 

I get it that the guilt would be horrendous, but denial means they are still not prepared to do the healing that is required for the entire family to recover. So, I sent more emails, explaining what I know. Crickets.

What’s My Duty now?

As you can imagine, on Saturday when I re-read those emails from 5 ½ years ago, I burst into tears. I need some healing too. I tried to warn my family. I offered not just my professional opinion but also my love. But I couldn’t reach them. I couldn’t get past their confusion, their denial , their defensive accusations. I watched helplessly as a precious member of our family suffered without anyone to understand them and guide them to the medical and psychological help they needed.

So, what is my duty now, as my dreams from years past suggested? I am still unfurling that flag. I know it has something to do with being resilient so that I don’t cave when I know what I know. It also has something to do with trusting that there are lessons even in suffering. Another duty is to respect the rights of others to be wrong — in their wrongness are lessons unique to them.

“Only you can know your duty. Only You. No one else.” What I know, I will share with you shortly, so that it is not only me who knows this important fact — facts.

The first duty is to me. Easier said than done, but if we all take note of this you can do so much more with your lives. Frequently  I tell my clients to be brave, to take on the tough stuff of your life, to be authentic — to Stand Up, Speak Out, and Talk Back. But this is so much easier than living your life for joy. Think about it, if you treat yourself with the love and respect you offer others, and if you FIRST create each day with a joyful embrace — then you can’t help but make the world a better place.

The second duty is personally mine, not yours, but it is yours to share with me if you wish. You see, I know quite a bit about family systems, and in particular NeuroDivergent family systems. It is the breakdown in my family system that contributed to the terrible consequences my cousin faces. This breakdown doesn’t have to happen again to any other family if you understand how to intervene when the worlds of NeuroTypical and NeuroDiverse collide. I will discuss the nature of this collision in the next installment. 

Uncle Ed: ASD in the Family Tree

Uncle Ed: ASD in the Family Tree

Quiet Uncle Ed was autistic.

My Uncle Ed was a cowboy. Truly! He wore a cowboy hat, western boots, those plaid shirts with fancy snap closures, and one of those impossibly big belt buckles. He smelled like leather mixed with the scent of aftershave. At least as a child that is how he smelled to me, when he would drop in for a surprise visit. I can still see his immaculate yellow and white ’55 Chevy sedan parked in front of my childhood home. He always kept it in pristine condition, even the white sidewalls.

Edwin was the antithesis of John Wayne, however. He was short and stocky and wore a pencil-thin mustache. He rarely talked, but I do remember his smile. He seemed happy with his life. In fact, I often remember that smile when I walked into the kitchen where he was sitting at the table, drinking coffee with my mother Irene (his baby sister). The conversation always stopped when I walked into the room, but not because it was anything private or profound. Uncle Ed would look at me, smile a broad warm smile and say the same thing he always said when he visited.

“You have your Grandmother’s hair. Did you know that? It’s the exact same color.”

I wasn’t sure this was a compliment. It felt more like an observation. Mom never said anything either. She gave no indication that she was pleased with my uncle’s observation. So, I just accepted it as a sort of odd Uncle Ed greeting, and quickly found a way to exit the room.

Uncle Ed was an itinerant farm mechanic, who made his living travelling between the ranches of eastern Oregon and Washington. Behind that ’55 Chevy, he towed everything he owned in his little travel trailer. It was a simple life. Ed would park his trailer at the ranch and start to work repairing whatever the farmer needed. When his work was completed, he’d move on to the next ranch. 

Sometimes he’d stay for a week at one ranch, sometimes longer. Between gigs, he would drop in on our family. I suppose that’s why he smelled like aftershave. When he came to town, he’d clean up, wash his car and trailer, and arrive on our doorstep to visit. He never called ahead but in those days no one did. You just showed up for a visit. 

Uncle Ed was always gone before I knew it too. I don’t remember him ever saying “Goodbye.” Nor did he bring gifts for my mother or either my sister or me. He just showed up, sat and talked quietly with my mother over a cup of coffee.

Many years later when he passed away, my Uncle Phil (another of Mom’s brothers) went to Wenatchee to close down his meager estate. Uncle Ed had “retired” and parked his trailer on a small lot he purchased near Lake Wenatchee. In the process of cleaning out his trailer, Uncle Phil found something he thought I might want to have. Sitting atop his TV set, Uncle Ed had placed three tiny photos in a folding golden metal frame — all photos were of me as a child. There were no other decorations or photos in his travel trailer, just pictures of me that my mother must have given him long ago.

I never realized I was important to my uncle, other than having hair color that he treasured. He never brought me a birthday present or even gave me a hug. Like my mother he must have been autistic. He kept to himself and kept his feelings quiet too. But now that I look back, I realize that he must have loved me and didn’t know how to tell me. All he could do was drop in for a visit, sit at the table conversing with my mother, and admire me from a distance.

Discovering Autism in my family tree.

Many NeuroTypicals who are married to someone with High Functioning Autism soon recognize the autism in our own family trees. First, I realized that my adopted daughter Bianca is autistic. Then I could see it in my mother, Irene. Slowly I awoke to the traits that were obvious in my ex-husband Howard Marshack. Eventually, I started waking up to the many relatives who are on the Autism Spectrum. Howard’s father Irving is classic. Also, there are several of my cousins, especially on my mother’s side of the family.

Soon I could see it in other relatives such as my Uncle R– and a couple of his children. Uncle R– married my father’s sister, so there is no genetic relationship to me. But that got me to thinking, why did my father and his sister marry people with High Functioning Autism?

Maybe that is the wrong question anyway. “Why” is the booby prize if you think about it. Besides autism is much more common than you think. When I first started to study this developmental disorder (autism) about 20 years ago, the estimate then was that one in 100-150 children were born on the Autism Spectrum. Today, the Centers for Disease Control and Prevention estimate that one in 36 children are born with autism.

Researchers suggest the numbers are growing because of better and earlier diagnosis, not because there is an epidemic. In fact, retrospective studies show that the number of autistic individuals in the population has remained very stable over hundreds of years. While we didn’t have the modern diagnosis until only the last few decades, we know that autistic people were mistakenly diagnosed with other disorders long before they could be properly identified.

So, it makes sense that my father and his sister, both of whom were outgoing and intelligent themselves, would each marry a smart, yet aloof Autist. Like my Uncle Ed, my mother and my Uncle R– were reserved “Aspies” who led quiet lives, spent long hours on their special interests, and left the rest of family life to their NeuroTypical spouses to tend to.

Getting past family resistance to the diagnosis.

That last sentence ought to hook you. How do you raise children in a NeuroDivergent home, when you have had nothing but convoluted NeuroDivergent family relationships for generations? How do you clear up the mysteries? How do you help family members come to know who they really are if they have memories that confound them?

Shortly after my mother died I had a dream about her. I saw her walking through the dining room at the home of my Uncle R– and his wife Aunt P– (my father’s sister). Even in my dream state, I knew my mother was dead, but I was puzzled about what the dream was about. I wanted to talk with her, but she didn’t look in my direction. She said nothing. She just walked past everyone silently. I saw her but apparently no one else did, in the dream.

I was only 25 when my mother died, but there was a message in that dream, a message meant for me.  As she walked past my uncle and his wife and their four children, I now realize what we had in common. Autism. Another message in the dream is that no one, but me could see my mother’s message — only me. Many years later that premonition would bear out, tragically.

Last summer, my cousin’s wife K– leaned across the picnic table and asked me if I had any recommendations for her granddaughter. Apparently the young woman was reluctant to return to college because she suspected she was on the Autism Spectrum, and she was fearful of failure. She confided in her grandmother and asked for guidance. I was surprised she asked but was happy to help and referred her to some books that might appeal to a college age young person. Of course, I also suggested to K– that she ask her granddaughter to seek professional psychotherapy back home on the east coast where services are abundant.

I had been visiting my cousins on a wine tour in California at the time and we were having lunch in the backyard of K—‘s brother (who fortunately lives in California wine country). I was surprised when K– asked me for help since the family was very reluctant to consider the diagnosis in the past (and had actually been quite hostile to the subject). But I guess worry for the welfare of her dear granddaughter got her to be more open — and perhaps the recent hospitalization of her husband’s sibling.

I was hopeful that this new interest might lead to more openness in my family. It had been a real struggle getting them to reach out and help one of their own. Five years before the picnic I had suggested that one of Uncle R–’s children was on the Autism Spectrum, OCD and morbidly obese. I urged the siblings to talk among themselves and plan an intervention. However, I was summarily dismissed with some very unkind comments:

 

  • “Oh, you think everyone has a diagnosis just because you are a psychologist!”
  • “How dare you talk that way about one of our family! And behind their back too!”
  • “I don’t see any problem here at all. B– is smart and productive and doing just fine.”
  • “Just because you have problems in your own family, you want to find problems in ours!”
  • “I don’t want to get involved, frankly. B– has been a nuisance all of their life. I’d just as soon let them pay the price for their mistakes.”

So, I was ignored for five years. I found some old emails the other day in which I implored the family members to reconsider their attitude. I feared that this dear cousin of mine was in “grave danger,” and making some terrible life altering decisions. I spoke directly to this cousin too, but B– did not comprehend the severity of the problems they lived with. K–’s granddaughter is living in a more enlightened generation that is willing to look at the diagnosis of Autism Spectrum Disorder. But my cousin, having grown up with no help and no awareness, faced tragic deterioration — all alone.

Facing the tragedy of untreated autism.

When I got the phone call, I was not surprised but I was horrified. My cousin was in the hospital in a coma. B– had been found huddled in a corner of their house, hallucinating amid the clutter and filth that accumulated over the years of their life as a hoarder. Near death with encephalitis,  they were rushed to the hospital.

The story is long and painful and I won’t go into the details. Thank God B– survived after many months in the hospital and a nursing home. But the home was so infested with vermin that it had to be stripped of everything, so my cousin lost all of their belongings, including family heirlooms that the siblings treasured. After the house was disinfected, it had to be sold to help pay for B–‘s medical care and living expenses — in an adult foster home.

You would think that this tragedy would help my cousins come to their senses, but this is a slow process. For many years they blamed their NeuroTypical mother for the problems. “She drank too much and was too controlling,” they would confide. Never once did they consider why their NeuroTypical mother drank too much. Why was she distressed in her marriage? Why was she a helicopter parent, fighting with every scrap of her being to manage her troubled family?

Time to rewrite your family legacy.

This is the legacy of undiagnosed and untreated autism in a family. I see it often. Anger and resentment divide a family so that they are unable to come together for one of their own. Even in my own nuclear family, it is tough for them to listen to me. If anyone knows about the dysfunction in untreated NeuroDivergent families, it would be me. But by the time I became aware of these problems as an adult and a psychologist, my family had been suffering for generations.

My own children blame me, their NeuroTypical mother, rather than taking a long hard look at the family system that produced these problems. When the worlds of NeuroTypical and NeuroDiverse collide, it can literally destroy families. It doesn’t have to be this way. There are NeuroDivergent families charting a healthier course. But without guidance, it can be so confusing and painful that it is the sorrow that rules the day. 

It will take a lot of courage for my cousins to realize that they got it wrong. There is no blame. No one meant to do harm. But harm was done nonetheless — serious unalterable harm. Before more harm is done, I hope they can forgive themselves and reach out to each other to create a new healthier legacy for their children and grandchildren.

In fact, the other day one of them sent me a text asking for help for a colleague. He wanted to know how to help his colleague who is diagnosed with High Functioning Autism. Apparently she is being harassed at work, and my cousin wanted to know how to get protection for her. Of course, I responded right away with some tips on regulations that protect Americans with disabilities, as well as referral to mental health services. 

Ironically the dream I had so many years ago (when I was only 25) — and before I had professional training in the field of autism — when my deceased mother walked through the dining room of my autistic uncle — that dream was not just waking me up to autism in my family tree, but also a reminder that it would be a long journey before anyone would listen to me. 

My cousin dropped the ball with his sibling and allowed a tragedy to unfold. But if he can make a difference for someone else on the Autism Spectrum, who is struggling and frightened— well that’s a win for all of us. But deep in my heart, I hold out hope for my family too, that they can do even better than help a stranger. If our family can heal and come back together, that would be a terrific gift to give the world.

If you have a loved one on the Spectrum, please check our private MeetUp group. We have members from around the world meeting online in intimate video conferences guided by Dr. Kathy Marshack.
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