“. . . 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.
Dear Dr Kathy
I feel a deep connection to the themes of this post. I was normalized to autistic behaviors as a child. I am 61 now and it is nearly 11 years after the start of my journey of understanding, gained by reading material on your website as recommended by a friend, then followed up by library book reading that validated my experience over and over. I now understand that my mother, my fathers father, my mothers cousin x 2+, my fathers sister, my brother, my partner, a daughter, my partners father, … all tick/ed enough boxes to be high functioning autistic. In fact also, that the academic world I inhabited then is an autistic space. I am transforming my life step by step, no longer desperately unhappy though not yet freed from obligation or the sadness of the past, always striving & often struggling to do the Right things, but now guided by Reason not Madness. I thank you for your courage & your love, & that you have shared your understandings freely on the web to help those like me who are distant from professional assistance to break the cycle and take up a new lease of life ♥️
Thank you Sue. Your comment means a lot to me. There are so many of us who live without understanding and support. It doesn’t have to be that way anymore. Love, Dr. Kathy
Thank you, both. I’m in the same boat. Exactly. Amazing to know others have had such similar, hurtful experiences.
Thank you for sharing, and thus for making life less lonely for me.
Let’s hope for (at least) a peaceful and pleasant new year for us all.
Kathy thank you for being so honest about your pain. It explains the loneliness in these neuro diverse relationships so graphically. I can identify, not with my mother but with my husband.
I also rejoice that you have found the love of God to help you navigate life ongoing. I have too and it has, and continues to nurture me in my journey. Where would I be without His love and grace.
Even so I still hit times when I so long for nurturing from my husband as well. Like at the moment. I can identify with Jackson’s wife. There are long periods when I can be sustained by Gods love and nurture. Then something within me comes up and I try to ask for more in my relationship with my husband. It leaves a big disconnect between us. It pains him deeply. Then shame hits me hard as I have been seeking to be nurtured by God instead!
Also do you have an article written about why aspies find it so difficult to affirm us. I joined the final meetup on this topic recently. Thank you for that. You said each meetup you share different things depending on the participants questions which is good but I would love to see your fuller understanding of this topic please. There may be one on your website and if so could you please direct me to it. Thank you so much for all your understanding and openness, which sure makes us not feel we are so alone.
Hello Olivia and thank you for reading my blog. I am glad you found our Meetup group too. You will get lots of support there.
As to your question about affirming, that’s really huge. I have written several blogs on this topic so you will be busy reading for awhile! One of my favorites is this one “I Know You.”
In addition, I would check out my new online course. If your spouse is open to taking it with you, all the better. “Asperger Syndrome” & Relationships.
Thanks Kathy. It will not work for us to both do your course sorry. Appreciate the article on affirmation. Where can I find others too please?
Dear Dr. Kathy,
I can’t thank you enough for all you do for our community of NTs with close family members or partners on the spectrum. Reading your blog post brings tears to my eyes, for my losses, your losses, and the losses of many other NTs. I, too, grew up with an autistic mother. The description of your mother fits my mother, too, “When she looked at me,…Her eyes were blank – no energy.” And “I didn’t belong to my mother. We had no emotional connection. Claire engaged in many tasks of mothering, except the most important one – to love me unconditionally.”
Very confusing for me, my Dad (NT) always claimed Mom was a good wife and mother. My hunch is that his mother was also on the spectrum. Dad poured his life into his career, and after retirement volunteered on several boards. He always had numerous friends. Sadly, I and my 2 siblings have suffered terribly in very different ways.
Not surprisingly, I married a man on the spectrum. We’ve been married 42 years. It is fraught with disappointments and loneliness for me, more than for him. We have 2 adult children, 1 ND and 1 NT.
Dr. Kathy, you are a lifeline. You understand and affirm us so well. I thank God for you and the community you’ve created.
What a wonderful Christmas present you have given me Lynn. You are a treasure.