“. . . It’s a cold and very lonely Hallelujah.”
~ Leonard Cohen, lyrics from “Hallelujah” 1984

The loneliness of autism.

The December holidays tend to encourage us to believe in love again. We attend church services, decorate with colorful ornaments, bake sugary goodies, light candles, invite guests to feast on turkey or prime rib or Chinese buffet. We select gifts for our loved ones and wrap them carefully. We hold in our hearts the belief that all of our woes will magically disappear with a bit of holiday glitter.

For those of us in NeuroDivergent relationships, the illusion of a “happily ever after Christmas” is hard to swallow. For us the holidays are even more lonely than the rest of the year. As Leonard Cohen’s lyrics suggest the December holiday season holds a “. . . cold and very lonely Hallelujah.”

It’s a puzzle isn’t it that so many listen to Cohen sing his rendition of “Hallelujah” and yet miss the words. The music is mesmerizing, but the lyrics are just as transcendent as the reverberating chorus, “Hallelujah, Hallelujah, Hallelujah, Hallelujah.”

To me, the lyrics represent more than the typical loss of love between lovers. The poignant lyrics, carried on the primitive melody and sung by the throaty Cohen, is about the loneliness that comes when two different types of love don’t seem to come together (i.e.NeuroDivergence).

Clearly this is no ordinary Christmas song, delivered from the heart of a Jewish man.

Growing up alone with an Autistic mom.

Shortly after my mother Irene died, I had a dream about her. I had hoped that she would visit me after her death — to say a loving goodbye — to let me know she had passed through the veil — that she would always love me.

In the dream I was in the home of my Aunt Patty and Uncle Ray, as it was when I was a child. My cousins and my aunt and uncle were sitting around their large kitchen dining table. We were enjoying lively conversation. It was warm and loving and fun, just as I remembered it on my many visits to their southern California home.

Mom walked through the back door into the kitchen dining area. I was the only one to see her. I was surprised that no one else saw her — but then, even in my dream, I knew she was dead.

I watched her walk through the room. I held my breath. I was speechless. I wanted her to notice me. I wanted her to smile and tell me she loved me. I wanted her to reassure me that she was OK (safe and in God’s hands) and that I was safe and loved too. But nothing. She walked through the room — as she had in life — unaware of me or anyone else.

I awoke with a feeling of aloneness. I feel that way most days, even now.

I didn’t realize that my mother was probably autistic until many decades later. It may have helped to know sooner but I am not sure. I would still have grown up with an autistic mother, who treated me as if I were invisible.

My mother was not loving or comforting. She was an enigma. When she looked in my direction there was no expression on her face — rarely a smile. Her eyes were blank — no energy. I don’t think I ever heard her use my name.

I always knew that my mother was filled with intense anxiety. I walked on egg shells around her to avoid triggering tirades of vulgar language directed at me.

No matter how much I tried to be a “good girl,” I disappointed my mother. But it never made sense to me, even when I was a child. I knew her outrageous anger outbursts were some kind of mental illness — that it couldn’t be me.

That’s the problem though. If a child is to know who she is, she needs a loving mother (and father) to bond with. She needs to feel that she is loved. She needs to know that she belongs to her parents. Children want to belong. It is the belonging that makes a child feel special enough to engage in life as the unique person she is becoming.

I didn’t belong to my mother. We had no emotional connection. Irene engaged in many of the tasks of mothering, except the most important one — to love me unconditionally.

Mom left me as she had lived. She walked right past me, without recognizing me, her daughter, her beloved child. I have suffered ever since with a sense that I am alone and don’t belong to anyone.

What’s in a name?

When my daughter Bianca was a young preteen she approached me with a disturbing problem.

“I don’t think I know what love feels like,” she said.

Immediately I felt alarmed that I had failed her somehow. I looked at her with a worried mother expression and said, “Oh Bianca. You know that I love you, don’t you?”

“Yes,” Bianca said matter-of-factly, without a trace of warmth. “I just don’t know what love feels like.”

Like my mother, Bianca is autistic. I knew it at this time of her life but I hardly comprehended how she really thought — or felt. When Bianca mentioned that she didn’t know how love felt, I leaped in as any NeuroTypical mother would. Firm in my belief that love is an interactive process, and that I could resolve her dilemma by offering my loving concern — it never occurred to me that she was analyzing the concept of love, rather than embracing the emotion.

I really thought that if I offered her my love in that moment, she would know what love feels like — right then. In fact I assumed she wanted to experience my love for her, when she was clearly on a different track. I was skunked once again.

Bianca’s behavior reminded me of my mother. I knew I loved my mother. I even knew somehow that she loved me. But I never felt loved or acknowledged or affirmed. Even more confusing is how I knew I was loved. It was through words alone. My mother never used my name, but when I was very young she called me “Angel Baby.”

You’d think this sweet nickname would make me feel special, but it was the only name Mom used with me. In fact, my younger sister Debra thought my name was “Baby” until she was about seven. I used to tease her about it. In front of other children I would ask her what my name was. When she said “Baby,” we would all laugh at her and make her cry.

Mom just could not affirm who I was. When I made childish mistakes, Mom accused me of all kinds of wrong doing, when it was really a failure on her part as a mother. She never seemed to understand normal child development. This is yet another way Mom left me hanging. Her child was left to navigate normal child development without maternal guidance –and yet it was all wrong somehow for me to be a child. For example,

• Mom reported that I was a difficult baby and refused breast milk. Others reported that I was a sweet, easy baby.
• She assumed that I did not like being held when I was a toddler, because I would slip off her lap to run around. Don’t two-year-olds do that?
• She accused me of being stubborn and always having to have my way. I presume I was just asserting my right to exist.
• She scrubbed my face raw in an attempt to clean the tiny bit of acne I had as a preteen. How could she not know it was normal for a 12-year-old to have pimples?
• She did read to me for a brief time because my Grade 2 teacher asked her to. Once the teacher reported that I was in the top reading group, my mother stopped reading to me. Deed accomplished I guess.
• She never comforted me when I was ill. Instead, she told me to go back to bed and sleep it off. “That’s how you build immunities,” she said. It’s true that I am extremely healthy to this day.
• Not once did she attend any of my school concerts, even the ones in which I played a solo in the band. Who was I playing for if not for my adoring parents?
• She always bought my clothing and shoes two sizes too large, because she claimed I would “grow into them.” This goes beyond practicality if you ask me. I never felt pretty and none of my friends admired my new school clothes.

BUT — I had a T-shirt when I was about five that I loved so much I cried when I outgrew it. The shirt was striped with my name — Kathy-Kathy-Kathy. No wonder I cried since that little T shirt was about the only thing that affirmed me.

Bonding with your child is their first experience with love, especially the kind of love that is unconditional. Using your child’s name is important in honoring their uniqueness in the family. Kathy may be a relatively common name in my generation, but there is only one of me and my mother never seemed to know this.

What did that leave me with? Look at this precious child, standing barefoot in the summer sunshine, holding her baby doll and wrapped in a hero’s cape. Yes, and wearing her “Kathy-Kathy-Kathy” T-shirt. How hard would it have been for my mother to sweep me into her arms and tell me she loved me? How hard would it have been to smile at my nurturing instincts and help me put a diaper on my “baby”? But she did none of this. Eventually my doll was left on a shelf in my bedroom – just like my heart.

Heartbreak is proof that you have loved.

Leonard Cohen’s famous song “Hallelujah” is a melancholy rendition of the complications of love in this life. Even King David got caught up in the desires of the flesh and lost track of his duty to God.

And so it is for all of us. We desire to be loved. It starts with our parents and continues with friends and teachers and classmates and boyfriends and girlfriends and bosses and coworkers — and hopefully the love of your life.

We make mistakes along the way but these mistakes make us stronger, more lovable and more loving. Heartbreak is proof that you loved deeply — and can love again.

But what if you grew up with a parent who could not or would not notice you? What if you married a man who did the same? What if you parented a child who said she doesn’t know what love feels like? I suspect if this is you, then you have not really felt loved and lovable. And you have not been able to fully give the love back.

What do you do about this primal need to love and be loved? How do you reclaim your humanness when you started life with a loveless mother? Cohen sings of a “broken Hallelujah.” I cling to his words because that is all I have. No fond memories of a loving childhood. No visits from daughters and sons-in-law and hugs with my grandchildren. But I do have this sense that I am part of something greater.

In fact it is from my loveless childhood that I was first motivated to seek out answers to the dilemmas of NeuroDivergent relationships. I failed time and again to understand that I was not alone in my experience. Apparently I needed to be reminded of my mother’s cold, aloof, cognitve kind of love by marrying an autistic man, and adopting an autistic child. I loved them all dearly, though they never loved me back – emotionally.

Through my books, and online support group, and my recorded video course, I reach and support many people who feel alone as I do. I appreciate them in the ways I needed affirmation from my family members. And they affirm me back. It feels like love to me when I get sweet messages such as this one from Cindy in Canada, regarding an online conference call:

“Thank you again for another hour of connection with women who truly understand the journey. I am encouraged by the sisterhood of similarity. Today’s questions and sharing from other women had me nodding in agreement once again. . . I continue to learn so much from you, Dr. Kathy. Your insights and compassion are so essential. Thank you!”

Two kinds of love.

Jackson, a NeuroDiverse client of mine asked me once how he could be a “better husband.” He knew that his wife was dissatisfied and on the verge of leaving him, but it was beyond his comprehension why — when “I love her so much.”

Further Jackson was deeply troubled by his wife’s anger. She cursed him often because of his lack of empathy. While he could accept that he was more cognitive than emotional – and that he lacked an awareness of her inner state – he was puzzled that she would treat him with such disrespect, when she claimed to be a sensitive, nurturing person. It seemed to him an obvious contradiction for his wife to demand empathy.

I quite agree, but it’s not that simple. Little Kathy wanted empathy too. She wanted to be loved unconditionally (i.e. without having to do anything for it except to belong to her mother). That’s what Jackson’s wife wants too. Only instead of quietly removing herself from life as I did, Jackson’s wife is fighting back. I don’t blame her, even though it won’t work because anger and love are a mismatch.

Another verse from Leonard Cohen’s famous song can help us understand two kinds of love. This could have also been Jackson’s lament:

“I did my best, it wasn’t much
I couldn’t feel so I learned to touch.”

Don’t you think it would be a lot easier if we helped people understand that “feelings” are “touch” as much as “emotions”? That they both create love, enhance love, and help us know our worth in the eyes of the beloved?

Even if Cohen is just singing about a man’s loss of a woman’s love, I like to think of the lyrics as the greater message that we can transcend our human missteps in romance by knowing that God loves us. In this Earthly world of human contradictions loneliness doesn’t have to hang you up if you know God is with you.

“And even though it all went wrong
I’ll stand before the lord of song
With nothing on my tongue but hallelujah.”

I wish all of you a Merry Christmas and Happy New Year.

 

Who Gets It?

What’s it worth to have another person “get it”? What’s it worth to finally be heard after decades of being lonely in a NeuroDivergent relationship? What’s it worth to reclaim your sanity from conversations that go nowhere? What’s it worth to be seen, heard and affirmed?

The answer is that it is worth plenty to join a group of like-minded people to learn that there is relief. By helping each other, in a similar situation, we come to know and share lots.

• That you are not alone.
• That others want to help.
• That there are answers, if only you know where to look.
• That it feels wonderful to help those new to the NeuroDivergent journey to clarity.
• That you can heal and reclaim your sanity.

I started this membership group, “Asperger Syndrome,” Partners & Family of Adults with ASD, back in 2009, right after publishing my first book, “Going Over the Edge?” Even after publishing this book, I wasn’t sure anyone would really understand my life — the life of a psychologist who had lived with an ASD mother, married an ASD man, and adopted an ASD child. But I hoped I would find you, and I did.

Over time our little once a month lunch group, grew to national and international proportions. We have members from every continent, and almost every country. It’s stunning when you think about it. Regardless of nationality, native language, age or gender, we have grown from a small group of interested people, to a community who “Gets it.”

Julie Gets It.

I was talking with Julie, our Ambassador and new Membership Manager, the other day. It was a Zoom call of course, since I live In Oregon (USA) and she lives in New Zealand. We were laughing about how we first me, and how we have grown over the years.

“I was on a vacation with my family in Egypt, when I decided I just had to attend one of your teleconferences, Dr. Kathy.” Julie recounted her trepidation on that first call.

I said, “I had no idea that you were on holiday and that you took time to listen in to one of my calls.”

“I had to. I had to know that I was sane. I was worried that you wouldn’t understand what I lived with. I was so worried that I didn’t want to give my name.” Julie admitted.

We both laughed. “Yes,” I said. “Many of our members are so afraid that no one understands or that they will hurt their families, so they keep silent or even disguise who they are at first. Eventually, though they come to love our little community and open up completely.”

Julie has grown from that first timid phone call, to become a regular at events and eventually tapped to be our Ambassador. This is an important role, since the Ambassador helps “newbies” find their footing in our community. Julie knows what it’s like to be new and uncertain if you will be accepted. Of course, with her warm spirit “newbies” don’t feel new for very long.

In fact, because of Julie’s talents she has been promoted to Membership Manager. With Daniela leaving this position at the end of the year, it seemed a natural fit for Julie to expand her role as Ambassador to include Membership Management. After all who better to answer your questions about our community than Julie, someone who “Get’s it,” — gets what you live with day and day out.

Where’s my rocket ship taking me?

A few years ago, I had a premonition that appears to be coming true. I dreamt that I was remodeling a long-forgotten rocket ship in my basement. It was a rocket ship that was specifically meant for me, but until I retrofitted my ship, it wasn’t ever going to lift off. I think it is ready now, with the addition of Ambassador Julie, and my first ever online recorded course, “Asperger Syndrome”& Relationships.

Even as I write this blog, I am drafting yet another course, Conversational “Aspergian.” This second course will take an even deeper dive into what I know about NeuroDivergent relationships. It is once again designed for the NeuroTypical and the NeuroDiverse, so that we use the 7-Step Interface Protocol to resolve the problems when ASD and NT worlds collide.

These courses are an opportunity to augment what I offer in my books. The courses are a place to learn skills for sure — but also a way to share with others in the community. I’ll soon set up a convenient online meeting room for those taking the courses. This is where the real healing takes place, isn’t it? In conversation with others, we come to know who we are and where our rocket ship is taking us next.

I am looking forward to meeting more of you. Thank you for being part of an amazing, healing and loving journey.

Our one big mistake.

There is one big mistake that all of us make, whether NeuroTypical or NeuroDiverse. This is the assumption that we are operating in reality and that we know the truth, when in fact, we are operating in our “map of reality,” or our perception of reality. Therefore, the truth as we know it, is a fabrication of our conscious processes.

Wow! That’s a serious philosophical way to start this blog, but I wanted to put it out there right up front. Once you get it that your mind can play tricks on you, you should be better able to understand the differences that abound in a NeuroDivergent relationship.

If you want your relationship to go more smoothly, to be more loving, and to be understanding and understood, you must follow these five steps.

1. Slow down in order to access your conscious mind, not just your intuition or instinct.
2. Be conscious and listen to all of the cues you are receiving from the other person; and those cues you are sending.
3. Be consistent, so that you are saying what you mean and use the words that convey this meaning. Check your intuition for consistency, but don’t rely on it alone.
4. Correct your errors of perception. This is not so easy to do, but if you get resistance (or disagreement from the other person) you are not being consistent. Change your approach.
5. Stay in the flow. You know you are in the flow when your consciousness and that of the other person are in synch. If you aren’t in the flow, go back and (1) slow down, (2) be conscious, (3) be consistent, (4) and correct your errors of perception.

 

The basic nature of consciousness.

On October 3, 2022, scientists published a new theory that consciousness is a function of episodic memory — that consciousness arises from our memories. Stay with me while I walk you through the basics of this theory. More importantly, this theory will help you understand why your NeuroDivergent relationship hits the skids so often.

Simply, it is the fact that the NeuroTypical and the NeuroDiverse process and store episodic memories differently. If, as the researchers suggest, consciousness develops (i.e., grows and matures) as a function of memory (episodic memory or the things that happen to us and the people we meet along the way), then each NT and Autist will acquire consciousness very differently from the other — and build a map of reality that is unlike their partner.

Further complicating the communicating and relating parts of the relationship is that we continue to confound each other with new memories based upon the old constructs in our mind — and wander even further away from each other.

This process of developing consciousness is unique for all of us, of course. No two “maps of reality” will be the same, due to a variety of human temperament, personality, culture, etc. However, for those in NeuroDivergent relationships, the maps of the partners are profoundly different — and explain the divergence when trying to connect.

 

First comes memory – then consciousness.

There are different types of memory but let’s stick to a short discussion of “Declarative Memory,” which includes semantic and episodic memory. Declarative memory can be consciously recalled (as opposed to unconscious memories which need a little prodding to surface), such as facts and knowledge. Autobiographical memory is one type of declarative memory. While semantic memory involves the recollection of facts, episodic memory involves the recollection of previous experiences in life. (Read this again.)

This is key to our discussion. Studies of those with ASD show impairments to their episodic memory but preservation of their semantic memory. If consciousness is formed through retrieval of our memories, and the NeuroDiverse rely heavily on words and facts (semantics), then conscious awareness of who they are — and who are others — and their sense of contributing to the community in which they live — is about the parts of life, or the details.

On the other hand, if NeuroTypicals rely heavily on episodic memories of experiencing life, then conscious awareness of who they are — and who are others — and their sense of contributing to the community in which they live — is about how the parts interact, or the whole of life.

Think about how critical this is to communicating, to relating, to knowing yourself in relation to another. If our NeuroDiverse loved ones store their memories semantically and develop conscious awareness of the truth of who they are, and we are, through these semantic memories — well that leaves those NeuroTypicals without a way to use experiential/episodic learning as a method of connecting. This often leaves the NT feeling misunderstood, unheard and even emotionally invisible.

 

The loneliness of A-Synch communication.

A NeuroDiverse client of mine complained that my description of him as transactional was pejorative. He offered that his communication with his wife may be “A-synchronous” rather than merely transactional. He knows that he loves her and that he wants to improve the relationship, so he reasons that he can’t be transactional. However, he is aware that he is not always conscious of her meaning when she talks. Often, he needs time to process her meaning (which is characteristic of the semantic processor).

This is a perfect example of semantic memory versus episodic (whole experience) memory, and the underpinning of their marital problems. Semantic memory predisposes the NeuroDiverse spouse to use facts and very specific words to retrieve memories and meaning (i.e., his insistence that I use the term A-synchronous rather than Transactional). The episodic memory predisposes the NeuroTypical to use intuition and feelings to retrieve memories and meaning.

Those of us living in NeuroDivergent relationships know how much slower our ASD loved ones are at processing their own feelings, and ours. We watch as they pause, close their eyes, or inexplicably walk away from a conversation. Occasionally NTs have to endure an outburst of anger, as the NeuroDiverse person feels confused, overwhelmed, and even threatened by the NTs request for “deeper” emotional meaning. On the other hand, if given enough time to process (even writing down their thoughts), the NeuroDiverse person can reach some of those episodic memories that have been stored as life-experiences-with-others.

The NeuroDiverse individual develops a transactional consciousness as a result of relying on semantic memory. The NeuroTypical develops an interactional consciousness as a result of relying on whole life experiences memory (episodic memory). Let me give an example.

Tasha, a NeuroTypical wife says, “Hey Hon. Would you mind picking up the living room before our guests arrive?” The wife gives her spouse a prompt to affirm her (i.e., “Would you mind. . .”).

“OK,” says Gustaf, the NeuroDiverse husband, but he wanders off to his study instead. He does not recognize his wife’s emotions, nor does he figure in the timing of taking care of her request. In other words, he does not retrieve episodic memories of similar interactions to help him recognize what his next move should be.

“Hey Honey,” she prompts. “I really do need you to pick up the living room. We don’t have much time.” She is relying on his recognition of her anxious concern about getting ready for guests. She appeals to his empathy for her by saying “I really need you. . .” Empathy is a function of episodic memories with others, something lacking in her NeuroDiverse husband.

“I said I would do it. Don’t worry.” He closes the door to his study. Gustaf truly means that he will “do it,” relying on semantics to seal the deal. However, he has not acknowledged Tasha’s emotional need to be understood. Nor has he included a review of past experiences to help guide him in future behavior. 

Exasperated, the NT wife starts cleaning up the living room. He walks out of his study as the first guest arrives. As she fluffs the last pillow on the couch he says, “Why did you clean up? I told you I would take care of it.”

As the NeuroDiverse husband smiles a gracious greeting to their first guest, the NT wife is ready to explode, but she has to calm herself for her guests. No one knows that she has had this frustrating exchange with her spouse.

In this simple exchange between transactional spouse (semantic memory) and interactional spouse (episodic memory) there are so many errors that each are making. The Big Mistake for the NeuroTypical is that she believes her spouse will retrieve memories that help him consider the time, timing, his wife’s emotional needs, the mess in the living room, a plan for taking care of the living room, etc.

The Big Mistake for the NeuroDiverse spouse is to respond only to the words his wife is speaking and promising to do something he has no plan for. He is waiting for more data, which doesn’t come until the guests arrive and he witnesses his wife cleaning the living room.

This simple, yet big mistake carries huge consequences. Tasha feels ignored when she made a simple request. Because she wants things to go well for the evening, she takes over for Gustaf rather than nag him to finish the task. Gustaf may feel frustrated too if his wife is angry with him for not doing his part to ready the home for guests. After all, he intended to clean up the living room, but she decided to do it for him. His reasoning is that it’s not his fault that she jumped the gun.

When the NeuroTypical and NeuroDiverse worlds collide daily in these not-so-ordinary moments, the emotional toll is heavy. In addition, over the years the consciousness that grows from the semantic v. episodic storing of memories, leads to a NeuroDivergent life with no connection in sight for a couple. How can the NT feel loved when none of her requests are honored? How can the NeuroDiverse feel loved when he is treated like a child who never quite gets it right?

 

Conversational Aspergian.

I’ll be offering a course soon on “Conversational Aspergian,” in which I outline theories and techniques that help us to better understand the mindset of the NeuroDiverse v. the NeuroTypical, such as this theory of consciousness. You can register to be the first to know about it on this page.

As you can imagine, there is a great deal more to this theory than the tidbits I have presented in this blog. However, I hope you get the idea that it takes a lot of effort to cross the boundaries of NeuroDivergent communication to get some understanding, connection, and love.

With this new research published just this month, we can now add to our language of NeuroDivergence the theory that consciousness evolved following the development of memories (in particular episodic memories). As those memories were encoded semantically or whole life experientially  individuals developed transactional consciousness or interactional consciousness. The deficit in episodic memory that is seen with the NeuroDiverse (and primarily transactional person) doesn’t mean they lack consciousness of others, nor of their responsibilities in their community — but it does mean it takes them longer to access that level of consciousness.

If these two systems are to be understood and appreciated, both parties to a NeuroDivergent relationship need to accept and affirm the conscious reality of the other person. Correct your Big Mistake with the Five Steps and realize that even if it is disorienting to do so — and it takes a bit longer to finish the conversation — it is better to step into the territory of the other person for a better understanding of how their consciousness works.

Please let me know if you are interested in my new course, “Conversational Aspergian.” Click here to be announced when it’s ready. Or contact Daniela with your interest/questions, at drkathysocialmedia@gmail.com