I frequently hear this comment or another variation: “Aren’t we all on aSpectrum?” The answer to the first question is “No.” The answer to the second question is “Yes.” So let me clear up this confusion.
We are part of something greater than a “Spectrum.”
I’ll start with the second question first. As human beings, there is a wide range of what is considered “normal” human behavior, including intelligence, physiology, and personality, to name just three. In fact, human beings are really unlike any other life on the planet in this regard. We have hundreds of languages, temperaments, interests, and diets. We can live in a townhouse, near a river, in a sandstone adobe, in a metropolitan area, in the Yukon or the Amazon. Human beings are remarkable in our diversity.
There are even finer distinctions that can be made. If you are playing poker, one person will be able to win with a pair of threes, while another folds their cards when they have less than a “full house.” Or some of us have that broccoli gene and we can’t stand the smell of broccoli cooking, while others can’t wait to eat the savory vegetable.
Another amazing quality of human beings is our ability to transform ourselves. For example, some of us are lucky enough to have inherited the “happiness gene.” Yes, it apparently exists and I didn’t get it. But what the rest of us can do is indulge in a variety of psychological exercises to increase our happiness potential. We may not see the bright side of a disaster at first glance, but with enough therapy, meditation, prayer, and good healthy living, we can come to appreciate the lessons in our misfortune.
I suppose we can describe this multitude of diverse traits as “a Spectrum” of human behavior, but I think that is selling us short. We are so much more than a collection of traits, great and small. Sure, we can categorize our height along a spectrum of short to tall, but that’s where the “Spectrum” analogy ends.
Milton Erickson, M.D. used to remind us that no two people have the same fingerprints (true). DNA researchers tell us that our DNA is remarkably similar to a frog’s. Good grief, this leaves us in a pickle if we are looking for a “Normal Human Spectrum.” Rather it makes more sense to me to consider people as part of a complex system of interacting systems, producing infinite varieties of Human Beings.
Archbishop Desmond Tutu used to say that we “are made for each other,” which has nothing to do with a compilation (or Spectrum) of traits. What we Humans are capable of is coming to know who we are — and who the other person is — by relating to each other as special, unique, lovable gifts from God.
Autism is defined as being “On the Spectrum.”
Don’t be waylaid by the term “Autism Spectrum Disorder.” While the diagnosis is grounded in scientific research, the term itself (Autism Spectrum Disorder) is just a concept invented by the American Psychiatric Association when they updated their latest Diagnostic and Statistical Manual of Mental Disorders. The term represents what they felt was the “best fit” for the diagnostic criteria. However, It tells you nothing of the complexity of each human being with this diagnosis. It only helps you understand one little part of the complex interacting systems of the Autist’s life.
In other words, your Autist is just as complex as any NeuroTypical. In the Autist’s Venn Diagram of their interacting traits and experiences, they have a bubble for Autism Spectrum Disorder (and a bubble for their relationship with an NT). For NeuroTypicals, the Venn Diagram includes a bubble for having a relationship with a person with ASD. You can expand this concept exponentially.
Yes, I have spent much of my adult life pondering the components of this diagnosis — and how it affects the quality of life and interpersonal relationships. I do think a diagnosis helps us better understand how our Autists think. And that knowledge is vital to improving our NeuroDivergent marriages and families. In fact, it might even be critical. But it is only one part of the human experience for ND couples.
We are part of something far greater than aor theSpectrum.
If you are following me so far, what you should get is that Autism Spectrum Disorder is a micro concept — a way to categorize a handful of traits and create a diagnosis. But who that person is? — where they fall into the macrocosm of Human Life — well that is for us to discover withthem. That’s what Desmond Tutu meant when he said we are “made for each other.”
It’s been a long time since I cried over my children. I have felt sad, shed a few tears, sat quietly as I watched other parents celebrate special moments. But it has been a very long time since I have felt the deep grief that is stored in the depths of my psyche. I keep it hidden.
But today I cried. I cradled my face in my hands, since there was no one there to hold me. I sobbed and my whole body shook. Wave after wave of grief poured forth — scaring me — soothing me.
I suppose I pretend that I am fine. No one asks me how I am coping. No one seems to comprehend what it is like to be an alienated parent. Most people don’t believe it actually. They say silly things like, “I am sure your daughters will come around someday.” Or they laugh and say, “Oh my goodness, my Mom sure makes me annoyed too!” But they get to see their Moms on Thanksgiving. I spend every holiday by myself.
It’s been 16 years since I have seen Bianca and 8 years since I have seen Phoebe. Both daughters are now in their 30s. I missed the decade of their twenties entirely. My grandson Jameson was only 8 months old when Phoebe screamed, “You’ll never see Jameson again!”
I can’t tell if my grief is over the loss of my girls, or if it is over how cruel they are. It is confusing. I adored my daughters and threw myself into mothering. It is beyond my belief that my love was wasted. It can’t be true, can it?
This is the nature of parental alienation — or rather, where it ends. Profound unremitting grief. The targeted parent can never seem to unravel the tragedy. Am I unlovable? Are my children just brainwashed? Will they come around to the realization that they still have a loving mother? What have I done to deserve this? Is there no way to escape this searing pain?
I am strong and resilient. I find ways to keep the grief at bay. I have long stretches where I don’t feel it — so much. But every once in a while it gushes forth – like one of those unpredictable volcanic eruptions. It’s not an on-time geyser like Old Faithful at Yellowstone Park. No, it erupts without warning and tears the landscape apart, killing everything in its path. I can’t bear it. I want to die.
I saw Bianca’s picture today, on LinkedIn. I was having a Zoom call with my website developer. We were discussing some improvements to my website that involved stories of my life with my daughters. My web developer googled Bianca and her picture popped up. When I saw her beautiful face — and she was wearing a cute pink hat — I felt so much love for her. Later when I went to LinkedIn on my own computer, I found that Bianca had blocked my access. I just wanted to see her — to have a little moment with my daughter. But she blocked me.
My colleague googled Phoebe too and found her on Facebook. But again I was blocked, when I tried later. My daughters have gone to great lengths to shun me, to deny that I exist, to cruelly banish me from their lives. Why? If you asked them, I suspect they could not tell you. There is nothing that warrants this abuse, but that is how parental alienation works.
It’s not reasonable. It is destructive beyond belief. It is not just cruel to me, to the mother. Like the volcano, it spews scalding hot ash and burns the landscape of the lives of everyone in the family.
The moment I say, “I want to die,” I know it is not true. It is just a way of saying that I am in pain. How does a mother live without her children? For the rest of her life? She takes back her life the best she can. She devotes herself to her work and her writing and taking care of her home and her pets. This is my life, if you want to know.
Last week, I attended a professional conference in Sedona. It’s a beautiful place, in the high desert, with pine trees and waterfalls and ancient Native American pueblos nearby. As I pulled my rental car into the B & B, a young employee approached me. He welcomed me and asked if I needed anything. I had rented a modest little cabin next to the rushing stream.
He looked intense as he asked, “What are you here for?’
I answered, “I’m attending a conference. I am a psychologist, so I am attending a professional health conference.”
He brightened. “Oh, that is amazing. My name is Edwin. What’s yours?”
I smiled. “I’m Kathy, Edwin. Nice to meet you.”
I thought the pleasantries were over, but Edwin persisted. “Would you have time to talk?” he asked. “I’d like some help.”
I am used to this. I am often asked to help. Out of the blue total strangers seem to recognize that I am a healer. It must be something that I radiate. “Of course I will help Edwin. Let me get settled into my room and I will find some time for you tomorrow.”
Edwin beamed a huge smile. “Good night Kathy. Thank you very much,” he said.
As it turns out Edwin is 19 years old and has never talked with a psychologist. He wants to break away from childhood trauma. His father is a heroin addict and ex-con. His mother is chronically depressed and in and out of the hospital. He frets over his younger brother who is acting out and following in his father’s footsteps. We talked at length over the next few days, but especially on my last day at the conference. I taught him some meditation techniques to keep him calm in the face of his family’s distress.
I didn’t expect to hear from Edwin again, as I dropped back into my busy week with clients. Now all of my work is remote. Monday morning, I turned on my laptop in preparation for Zoom meetings with my clients — started a cappuccino in my Nespresso machine. Each day is like this — punctuated with snuggling my cats — watching the ocean — doing a few household chores — writing — taking a short stroll on the beach.
By Thursday I learned that God had another lesson for me. God came to me through a woman, who is married to a man with High Functioning Autism (HFA). She is suffering terribly in this marriage due to verbal abuse. She found no solace in her religion, or her therapy, and turned to me when she discovered my books. It is bad enough that the couple now sleeps in separate rooms, but her worst fear is materializing — her children are angry with her for being “mean to Papa.”
“I want a divorce, Dr. Marshack,” she says. “But I am terrified that I will lose my children. Instead of a divorce, maybe I should just go back to grad school and become a psychologist. My friends encourage me to do this, since they know I’ve wanted to for so long. But my kids will hate me for this too.”
“Whatever you choose to do, Rebekah — it is not wrong to take care of yourself,” I said.
“But what if all of my children turn on me? One of them has moved far away and hardly ever talks with me. The youngest is complaining that I am never there for her. I can’t believe it since I have been her only parent — really — for years. Her father is all wrapped up in his work, so it has just been me and the children.” Rebekah is tearful and distressed as she explains her double bind.
“Of course these are not easy choices, Rebekah. But because of your life and these heartbreaking choices, you would make a good psychologist, wouldn’t you? I mean to say that you could reach your clients from your heart, not just your head.”
Rebekah looked at me plaintively and said, “But who would trust a psychologist who has lost her own children?”
I smiled at Rebekah — a knowing smile meant for both of us. “Well you know Rebekah — that’s my story too. My children have been estranged for years. You already know that, since you’ve read my books.”
Rebekah dismissed my statement quickly. “That’s different, Dr. Kathy. You’re famous. You’ve written books.” Rebekah gave me a look of confusion as she blurted out this last statement.
Once again I got it. “I know it’s hard to believe that you could carry on without your children. I certainly hope you never have to live with the grief I do. However, it’s also important to live your life for your blessings, not your fears. Sadly we tend to manifest the worst when we try to avoid our worst fears.”
Rebekah wiped tears from her cheeks. “I know Dr. Kathy. You have told me this before. It’s just that it is so frightening to be my authentic self when it could be the loss of everyone I hold dear. I wish it were easier.”
I left Rebekah with those painful and confusing thoughts. I know we will talk again, as she grapples with a life that she hadn’t planned. I wrapped up my work week after that call. But before the day was through, I got a text from Edwin.
“Dr. Kathy, are you still in town?” Edwin asked. “I just had lunch with my Mom and it didn’t go very well. Can you help me?”
“Hi Edwin,” I said. “No, I am back in Oregon but I am here for you. What’s going on?”
“Is it wrong for me not to want to see my mother anymore? It’s so hard to be with her.” Edwin is young and wanted permission from me to take his next step. But how could I tell this child to never see his mother again?
“Edwin, I suspect your mother loves you very much, but as you have told me she is troubled. I know you love her too or you wouldn’t have met her for lunch. It’s OK for you to take time for yourself if you need to. Sometimes we love someone so much that it hurts. Give Mom over to God, even if you can’t help her right now. Don’t stop loving her, but allow yourself time to find your inner strength. Life is a crazy, mixed-up thing isn’t it?”
God has a way of reminding me that my life is not a waste — that I am loved — and that there are other mothers’ children who need me. – and other mothers too. No doubt I will have more times when the grief over my daughters is unbearable — and I want to die — but what keeps me going is the resilience of young people like Edwin – and the anguish of a mother like Rebekah. Edwin, Rebekah, and I are a team, along with the rest of you who won’t let the unbearable grief hold you back from your mission.
This blog is very personal to me. I had to write it as a way out of my deep despair recently. It is also an excerpt from a book that I am currently writing. The book is about the devastation in families that occurs when a parent is targeted for parental alienation. I may change the title eventually, but for now, I am calling it “Love Gone Bad.”
Please give me your feedback on this blog. And if you are willing to share similar stories from your own life, please do. Only when we are willing to share our fears does it become easier to come to terms with our grief – express our authentic self – and create a radiant life.
“Take responsibility for your actions.” How many of you heard these words as a child, or uttered them as a parent? Mom knew what she meant. You know what you mean. But does your ASD loved one? Have you ever wondered why you even have to say this to an adult (or think it)? How often do you wonder why your ASD adult doesn’t seem to take responsibility for their own behavior?
When one of our members, Julie commented in our recent video conference on the topic of “Fatigue is Normal in ASD/NT Relationships,” she was referring to the mental fatigue of constantly rearranging her life for her two Autism Spectrum family members. Among the many things she finds fatiguing is that “. . . My husband takes no responsibility for his behaviors. . .”
I agreed right away with her comment because I have experienced the same dilemma, but then I wondered what it means to “Take Responsibility for Your Actions.” Think about it. We NTs do this all of the time. To take responsibility for our behavior, or our actions means to consider HOW our behaviors affect others. In order to do that, we have to anticipate how others might feel or think about our actions. We have to assess how the relationship will be impacted by our words and deeds. We have to care about these things too — because of caring means we try harder to keep the relationship healthy.
This sounds like empathy to me. Empathy is to care enough to anticipate how the other person will feel before you take an action or speak a word. Empathy is to care enough about the other person’s feelings to recognizethey may be affected by our behavior before or after the fact. Empathy is to apologizewhen our behavior is unhelpful or damaging. In fact, empathy is going so far as to repairthe rift we may have caused.
Since our “Aspies” do not have empathy (as defined by the Empathy Triad) they don’t take responsibility for their actions. Without empathy, they don’t anticipate our feelings, nor recognize our feelings, nor apologize for their conduct, nor attempt a repair for our distress (or confusion, hurt, annoyance, etc.). They might care at some level, but they do not demonstrate it by taking responsibility for their actions.
Instead, they assume all is well because they mean well. “Aspies” struggle to understand that their good intentions are not enough. It’s a start to have good intentions certainly. But as my mother used to quote an old aphorism, “The road to Hell is paved with good intentions.” To take responsibility for one’s behavior (as Julie noted) requires the empathy to use your good intentions to clean up the mess you inadvertently created. It’s not that you are a terrible person for causing distress to the other person. It is caring to use your empathy skills to repair the emotional connection that means so much to others. It is this empathic behavior of taking responsibility that is so important to respecting, honoring, and loving the other person.
Without empathy, our “Aspies” seem not to take responsibility for their actions. These are the common phrases that we often hear from them, which denote this lack of empathy and no attempt to repair the damage:
“What do you want from me?”
“If you didn’t want to know my opinion, why did you ask?”
“Why are you always complaining?”
“Why didn’t you tell me that you wanted that?”
“You never said that.”
“It’s not my fault. You didn’t tell me.”
Need I say that these phrases are stupefying for NTs? We would never say these things. Our empathy circuits make us evaluate the situation and try to resolve the unpleasantness. We want to keep the connections with our loved ones whole and healthy. So, we look at ourselves and how we can do better. Not so with our “Aspies.”
Can Awareness substitute for Empathy?
In stark contrast to Julie’s revelation, I have received many angry messages from “Aspies” who are incredulous that I would say they have no empathy. They describe themselves as “highly sensitive.” In fact, one woman describes herself as so sensitive that,
“. . . I am so bombarded with strong feelings/discomfort/sensory overload, I feel unable to sympathize with others, even when they need me to be. I get frustrated with them and believe my needs are greater since they physically/emotionally feel like they’re killing me. But I wonder, am I unable?”
This woman’s subtle awareness is significant. She is wondering about her ability to empathize. She muses that perhaps awareness can substitute for empathy or even lead to empathy. It is something to consider. But I think there is no substitute for the intrinsic ability to rise above one’s own feelings and really listen to the heart of another person.
“As much as this article was uncomfortable to read, it opened my eyes to the realization that I almost never think about what I might put my parents/siblings/friends through when I push for autonomy and express my needs/wants, but fail to remember theirs are just as important. . .”
Yes, I do think awareness helps. “Aspies” like this woman want to be understood for the autistic features that make their lives so fraught with complications. It is equally important for “Aspies” to understand that NTs can only handle so much self-absorption and emotional disconnect. I concur wholeheartedly with the woman’s final comments when she alludes to the fact that awareness at least can be a start:
“. . . I have obviously been hypocritical in the past and hope to do better in the future. Thank you for sharing your insights. I hope that by mutual understanding/respect/love NTs and Aspies can learn to live/love one another in more compassionate ways, too.”
Taking responsibility is a moral choice.
You will find more about this topic in my upcoming book “EMPATHY: It’s More Than Words.” It’s a moral choice to take responsibility for your actions, whether that is motivated by conscious awareness or empathic “knowing.” Both might be valid ways to get to the loving connections we all desire – NT and “Aspie” alike.
I would like to hear from you regarding this complex topic. Let me know what you think about the connection between awareness and empathy and taking responsibility for your actions.
THE SPAN OF LIFE by Robert Frost
“The old dog barks backwards without getting up.
“I can remember when he was a pup.”
Thanksgiving was the day 2020 ended for me.
I meant to write this blog by Christmas, but I needed more time to tell you this story. I needed more time to adjust to 2020, the year of incredible sorrow. This year has been like a giant tornado of chaos, hasn’t it? Just when you thought your life would calm a bit, another earthquake or fire – or death emerged. And each setback, sent me reeling into the unknown. I have never in my life been through a year like this.
However, out of the chaos is an opportunity to take back your life – or perhaps it is better to say that we can build life anew. That’s what Simon’s death has meant for me.
For me, 2020 ended the day my dog Simon died. It was Thanksgiving Day. At the time I was so traumatized that all I could feel was anguish, unbearable, gut-wrenching anguish. I felt cold and scared and totally alone. I had no one to comfort me. I had nowhere to hide from my feelings. I had no one to listen to my excuses for what I had done. I had never taken a life before. God, I was wracked with guilt and grief.
I had an impossible time believing that Simon would not get better, even when he stopped eating and my Vet told me all she could do was keep him comfortable until I was ready to make “the call” — the call to the Vet who euthanizes animals. She gave me literature to read on how to know “when it is time,” but I ignored it. She reminded me that Simon couldn’t make this decision on his own; that it was up to me to do “the right thing.” She was kind but firm. “No,” there was nothing else left to help him, she confirmed.
When Simon refused his meds and supplements — and he hadn’t been eating in days – I realized it “was time.” I looked at his sweet face, patiently sitting with me as I tried to get him to eat. Finally, I caved. “OK, Simon. Go ahead, honey, and go back to bed. I guess this is it, isn’t it?” I said with resignation. Simon walked slowly over to his bed and found a comfortable spot for his stiff and weary body. He sank into his bed because he couldn’t hold himself up anymore.
I started to walk away from him but I turned to see him eyeing me with that look of anticipation he always had when he needed to know if I was OK with his decision. It seemed to me that he was saying, “I’m done. I’m tired. I don’t want to go through anymore. Just let me sleep.”
I smiled back at him and said, “It’s OK Simon. I love you.” He looked comforted by my words.
I walked back to the kitchen with Simon’s uneaten food and meds. I rested my hands on the sink for a moment to steady myself. Silently I dumped the contents of the bowls into the trash. I knew I wouldn’t try anymore. I felt numb.
I left the kitchen and walked into the living room, where I found Neo, my 16-year-old Russian Blue cat. Neo was such a lover. He greeted me at the door when I came home each day. He especially liked to snuggle under the covers with me at night. He was always first in line for cat treats. He loved sunning himself on the upper deck. And he always had a childlike curiosity, even on his last day of life. I adored my darling little Neo.
Like Simon, Neo also endured a plethora of meds and supplements that I popped into his mouth several times a day; although he didn’t mind home visits from Dr. Rita who gave him chiropractic and acupuncture. He had a royal diet of raw cat food. His favorite was rabbit. But age and disease had ravaged his body too. He only weighed in at about four pounds by Thanksgiving, down from his usual 13 pounds.
After cuddling Neo for a moment, I went to my home office and texted the only person I knew on Whidbey Island (Jodi) to ask for a local Vet to help me. I had just arrived on the island the day before, with all my worldly belongings and my four animals. I sold my Portland home and wanted to start fresh on this lovely island in Puget Sound. I rented a little beach house, thinking it would make a good landing spot until I could find my next home. But I also secretly hoped that leaving Portland (the scene of so much heartache for me) would somehow restore Simon and Neo to better health. I didn’t want a miracle. I just wanted a beautiful and calm environment for all of us to heal.
The terror behind PTSD.
Without going into more detail, I want you to know that Simon and Neo passed graciously and peacefully. But it took me many more days to realize the significance of their lives and their deaths. I fought the pain. I blamed myself. I had a constant headache and my thinking was fogged. Eventually, though I decided to honor their passing and face my worst fear.
As the fog lifted, I felt the terror for the first time. I couldn’t stay numb forever. I couldn’t pretend that I was simply afraid. No, I was terrified. Once I couldn’t deny any longer that I was not in control, that I had no answers, that I couldn’t bring Simon and Neo back, nor could I have prevented their ultimate deaths – and that I had no idea how I would carry on – I felt the terror with all of its force. It was shocking.
Stay with me for a momentary sidebar, because this is important for any of you who have PTSD (Post Traumatic Stress Disorder). PTSD is an odd diagnosis since it is a rare disorder that is considered a normal reaction to abnormal events. In other words, PTSD is what normal, healthy people do/feel when faced with a life-threatening event, or they fear for the safety of loved ones.
It is the terror that survivors fight to suppress with denial, psychic numbing, self-recrimination, and rescuing others from their worst inclinations. To feel the terror means that you know for a fact that you are helpless to correct the losses and devastation rolling your way (whether it be the pandemic or the deaths of beloved animals). Once I accepted that what I was feeling was terror, I could trace it to the traumas in my life. Simon’s death triggered those traumatic feelings, causing a cascade of retraumatization (both remembering the past traumas and feeling the traumatic feelings all over again — as if it is happening now). You see, traumas can’t be resolved neatly. They can only be accepted. And that means the feeling of terror surfaces over and over again with each loss. PTSD is not curable, but with spiritual awakening, survivors can manage their retraumatization a bit better.
“For survivors of trauma, one thing that keeps us going is to believe that we can learn from our mistakes and do better next time. We take on huge responsibilities for the lives of others in our mistaken belief that all we have to do is try harder, do one more thing, take on the impossible. In other words, I felt guilty for letting Simon go because I clung to the irrational belief that I could save him. Better to believe that than to feel the terror of past traumas, or so I thought.
Out of Limbo and into Life.
A couple of weeks after Simon’s death, I awoke with a headache — just a headache and not uncommon for me, when I am going through such a powerful transformation. I got out of bed and took a couple of Excedrin, which quickly dispatched the headache, but also left me wide awake. So, I opened the New York Times on my tablet, and read the first column that got my attention, ‘Numb’ and ‘Heartbroken,’ the U.S. Confronts Record Virus Deaths (December 10, 2020).
Obviously, I could resonate with the column. I too felt numb and heartbroken. I have many losses to grieve and yet I am grieving again. But I also recognized in this news column that I am not alone. The authors stressed this for their readers. They wrote about how the pandemic has changed our focus in life. Yes, it is important to protect oneself from the exigencies of the pandemic, but it is also important to love and forgive and reach out to those who need to know they are not alone.
The following quote from the column is particularly poignant because it brought into my awareness not just the fragility of the human experience – but the power and majesty too.
“The new daily death record – 3,055 individuals who blew out birthday candles, made mistakes, laughed and cried before succumbing to the virus – far surpassed the spring peak of 2,752 deaths on April 15 and amounted to a stunning embodiment of the pandemic’s toll. In a single day, the country, numbed and divided, lost more Americans to the coronavirus than were killed in the Sept. 11th terror attacks or the attack on Pearl Harbor.”
My mistakes and my trauma pale in comparison to the suffering going on in the world during this pandemic. Nevertheless, I am grateful for my old dog, who taught me that the only thing I need is love. What Simon’s death reminded me is that it’s the mistakes that make us human – and forgiving ourselves and others those mistakes. God made us this way, not as a punishment, but as a way to help us learn lessons and grow from them. If we didn’t have free will (to make those mistakes) we would never understand the importance of loving each other.
As these truths washed over me, I also felt marvelously freed. I didn’t feel afraid anymore. I didn’t feel guilty either. Yes, I want one more walk with Simon and one more cuddle with Neo. Yes, I miss other loved ones every day. But I am not to blame. I am healing and I am on a mission to help others heal. This is what Simon’s death taught me.
Dear sweet Simon. Even in death, he protects me – and his angelic love guides me.
I am certain that you all have stories like mine and I would love to hear from you. Was there a pivotal point in 2020 when you had enough? When you fell to your knees and thought you couldn’t go on? When did you regain the courage to take back your life? Or if you are still in the fog let me know how I can help you. You don’t have to go it alone. Not anymore.
There’s a new diagnosis floating around. It’s colloquially referred to as “Covid Brain.” After this many months into the Corona Virus Pandemic, many of us are experiencing fear, fatigue, depression, and confusion. Our normal routines are up-ended. Without our normal social interactions and daily activities, we are just not ourselves anymore. We have been social distancing, quarantining with only a few people (and often with only one person), and we have been waiting — waiting fretfully for the crisis to pass.
But the crisis is not passing. This is discouraging. Plus, we humans were not designed for extended periods of crisis. We eventually break down under this pressure. We are wired for each other. We not only need the joy of companions, but we take solace from others in our situation. How do we do that now? When you can’t stop to talk to your neighbor or let your dog run up to a group of children at the park, and where are those children anyway?
As for me, my life has been in crisis mode off and on for years, simply because I have lived nearly my entire life with Autists and their multiple emotional/psychological/physical demands. When the pandemic took hold, I barely noticed. I was used to the isolation, as so many of us are who live with “Aspies.” Plus, Wonder Woman is my middle name. However, seven months in, I hit a wall.
I didn’t crash and burn. Not to worry. I am still here, alive and well and sitting in front of my computer, writing this message to all of you. What happened in September though, is that the city I live in was inundated with Pacific Coast forest fire smoke. Not only had the pandemic isolated me, but I was fighting for my life and the lives of my loved ones, because our air quality was at a hazardous level. For two weeks, I fought the invasion of the smoke, not daring to walk outside, swapping out air filters in my AC unit, eating what I had in the house, not daring to walk my dog for fear he would collapse.
And then it happened. I lost track of time. In fact, I lost a whole week. I have no memory of the days from September 21-28. I mean, I know I did things on those days. I had numerous video appointments during that week. But I was convinced that it was September 21st, a week later when it was September 28th. This is no little blip. It’s Covid Brain.
If you have little signs like this, it is no small thing. Please don’t ignore Covid Brain. Are you irritable, have headaches, feeling dizzy, trouble breathing, stomach/GI distress, chest pain, chills — or in my case, a bitty foggy-headed? Then it’s time to seek help. Seek a therapist, get a good physical, and come to our group to talk.
Disaster researchers tell us that we have hit the “Discouragement Phase” of the Corona Virus Pandemic. At first, we thought it would pass. Some of us stepped it up and volunteered at social service organizations, as if this thing were short-lived. But now we have entered the “Discouragement Phase,” since there is no end in sight. Not only do we have to live with Pandemic protocols for a long time — our world has changed, and there is no going back.
Some people are starting to accept these changes and refer to “The Before Times,” or “BC” (Before Covid). The message is clear. We have gone past the point of no return, and that old life is not coming back. But there is something after discouragement. It’s called the “Reconstruction Phase,” where we rebuild our lives.
Those of us who have successfully traversed severe trauma know how to reconstruct our lives. We are in better shape than many to face the losses imposed by the Pandemic. We don’t have to stay discouraged, or wish for “The Before Times,” but we can use all of our collective creativity to find a new way forward — by being our loving, creative, and authentic selves.
I think of my Covid Brain incident as a little reminder that I have a huge light to shine in the world, and so do you. No sense staying stuck in “Discouragement,” waiting for “The Before Times” to return. Instead of racking up symptoms, it’s time to show your resilience and take on the adventure of your new life where “No one has gone before.”
In Washington, there is a phone number to call to get information about the latest on Covid 19 (Washington Listens: 1.833.681.0211) and there might be one in your state too.
ADDitude Magazine has a survey about the ways uncertainty has affected you. I encourage you to fill out this survey if you are an adult with ADHD, and/or your child(ren) have ADHD. They’ll share the results in the coming weeks.
I have spent a lot of time in my books and blogs and seminars defining empathy. One of my most popular blog posts is Empathy: “Asperger’s” Style. Each time, I get better at it. That is the nature of empathy, actually. It is a process that grows stronger over time, as it is used and refined. Think about it, without empathy all you have is words (i.e. context and conversation), but no meaning to connect one person to another.
We see children first making attempts at empathy when they are about age six. For example, an NT child may offer to share a cupcake with a friend at school, even though they have been warned not to share food. The NT child’s need to connect is greater than the rule, or the repercussions for being scolded over breaking the rule.
On the other hand, the ASD child may also try to share their cupcake and then be humiliated when they are scolded by the Duty Aide. The ASD child is humiliated not because they shared the cupcake, but because they didn’t know the rule about sharing (or they got caught). It is kind to share the cupcake. It is empathy to do so in spite of the rule.
Subtle, isn’t it? Empathy is like that. It is the ability to know what you are feeling and thinking (such as, “I can’t wait to eat this yummy cupcake”) — at the same time that you see another child without a cupcake, and you wonder what they are thinking (such as, “I sure would like a bite of her cupcake”). The child acts on this wondering by offering some cupcake to the other child. If the child looks interested, the first child breaks off a piece of cupcake, and hands it to the other child. They smile at each other, as they wipe cupcake crumbs off their lips. Then they both wink at each other with an understanding that they broke a rule — and started a friendship.
However, the ASD child learns another lesson. The ASD child may want the cupcake. They may want to be polite and accept the offering. They may even want the friendship of the other child. However, breaking the rule is anathema to the ASD child. When they are caught sharing the cupcake by the Duty Aide, they may blame the other child by saying something like “she made me do it.” From this encounter, the ASD child learns that rules are more important than friendships. Sadly, she cut off a budding relationship.
If simple mistakes like this are made by six-year-olds, is it any wonder that the empathy gap widens as we grow up? By the time we are adults and engaged in life with a marital partner, and perhaps children, NTs and “Aspies” are light years apart in their abilities to connect.
As I have described many times in my books and blogs, empathy is more than emotion, or feelings, or sensitivity, or even understanding another person’s emotions, thoughts and feelings. True Empathy requires integrating a complex array of social and interpersonal information, and in a split second be able to talk about it with another. This is what is meant by “connecting,” or being “in tune,” or “in sync,” or “vibrating,” or “resonating” with another person (or life form).
My goal with this blog post and my MeetUp group, Asperger Syndrome: Partners & Family of Adults with ASD, is to enlighten and to search for the elusive communication, so that even without empathy, “Aspies” and NTs can connect. If you are not a member of my group, please join and if you are a member, please join our events and our discussions. You are not alone.