Autism Stories
I Want Touch | Don’t Touch Me
Touch shouldn’t be this difficult
“I’m not sure I would have married you had I known.” My wife said this to me one night. We were talking about our relationship in a rare expression of deep honesty and an almost as rare discussion of my recently diagnosed autism. I have always struggled with touch: the longing for it, the deep resistance to it that sometimes repulses me. I have felt deep shame about this. Knowing that it is likely connected to my autism has been useful to my self-understanding, but it has not yet improved my relationship with touch.
That night, during our discussion, I described this realization about my autism and touch. Unfortunately for both of us, my wife deeply needs touch — she says it’s her “love language.” Then came her words: “I’m not sure I would have married you had I known you were autistic and struggle with touch.” I was glad for her honesty. I am crushed by it.
I am crushed to know that, because of what I am, my wife’s life has been much less fulfilling for her. Her greatest need — and I haven’t been able to provide it.
We humans are hard-wired for touch
In the worst times of Covid-19, many articles were written about touch starvation. People were staying away from each other, hoping not to catch and not to spread an illness that was not understood and profoundly feared. Neurotypical people suffered, in ways similar to neurodivergent people, with touch aversion. The consequences were apparent and often distressing. For example, Asim Shah, M.D., professor and executive vice chair of the Menninger Department of Psychiatry at Baylor College of Medicine, was quoted in “Touch starvation is a consequence of COVID-19’s physical distancing.” There, he said:
When someone is touch starved, it’s like someone who is starved for food. They want to eat, but they can’t. Their psyche and their body want to touch someone, but they can’t do it because of the fear associated with, in this case, the pandemic.
Going an extended period without positive physical touch, he added, can even lead to post-traumatic stress disorder.
The article continues:
Touch starvation increases stress, depression and anxiety, triggering a cascade of negative physiological effects. The body releases the hormone cortisol as a response to stress, activating the body’s “flight-or-fight” response. This can increase heart rate, blood pressure, respiration and muscle tension, and can suppress the digestive system and immune system — increasing the risk of infection.
Several touch starvation articles cited two telling examples of our need for touch. In the first, the “Harlow’s Monkey experiments (Harlow & Harlow, 1965),” Harlow created inanimate surrogate mothers for baby monkeys made from wire and wool. One “mother” was a cuddly cloth one; the other was wire without the comforting cloth. Even though the bare wire mother was the only one that held a bottle of food, the baby monkeys spent far more time snuggled with the cloth mother, even though she had no food. The baby monkeys needed food to survive, but they needed touch to thrive.
In the second example, children growing up in Ceauşescu’s Romanian orphanages were abused and neglected in horrifying ways. They had very little contact with nurturing adults, no adult caregiver to bond with. Nor did they receive the loving touch they so profoundly needed. A generation of those children were left traumatized; their brain structures were damaged. Even children who were adopted into loving, nurturing families continued to be affected.
Self-Observations about touch
What have I learned about my autistic conflict with touch? This has been on my mind for a long time now and is impossible to escape. First, even though I am autistic, I am no exception to the hard-wired need for touch. I long for touch, to touch and be touched. I have that deeply human need just as neurotypical people do. Yet, there is something in me that turns away from the very touch I crave. This is loss, this is a form of death. I mourn the death of my natural relationship with touch.
Second is the dilemma of hugging. I go to functions with my wife’s family and everyone wants to hug. Part of me craves the hug, the other part pushes the hug away. Then my mind becomes involved, looking for the rules of the hug. How long should it last? What body parts should touch? How do you know when the other person wants to hug? Sideways or front hug? Where do the arms go? What do you do after? Do you look the other person in the eye and smile or is the hug the end of it? Where does my attention go during the hug? Is my awareness of the other person’s body different depending on their gender? Are there sexual elements to the hug or not? Oh good lord, let my mind just stop.
Third, In some ways, touch with familiar people is harder than from strangers. When my mother wants to hug me, or especially when she tries to hold my hand, I flinch. I feel a resistance that approaches nausea. When my father lay dying, I thought I should take his hand; that’s what they do in the movies, that’s what hospice workers might tell you to do, what the dying person might deeply want. I could not do it. I could not bring myself to reach across the abyss between my chair and his bed to grasp his large and somehow shrunken hand. That memory still echoes shame in me.
A final observation (at least for now): Before I understood anything about being autistic, when my children were still young, I committed to giving them abundant touch and affection. I felt the empty memories of my father’s distance, his not hugging me, not showing physical affection (I believe he was autistic as well!). I saw myself as somehow damaged by his not touching me (although I’m sure he was affectionate when I was a young child, before I have memories).
I speculated then that my upbringing is why I struggle so much with touch. I vowed not to make the same mistake with my children, and I did not. I hugged them, held their hands, read to them each night with their heads upon my arms. This touch I could do. Somehow it was easier, more natural, voluntary, not forced.
Now that I know I’m autistic, I don’t know how to process my ability to be physically affectionate with my children. My resistance to touch simply was not present. I may not yet understand this, but I am grateful I could share touch with them.
A Neurotypical Poet’s Take on My Conflict
A while ago, I replied to a Medium poem titled “Touched,” by poet Amy Ganser.
I said: “Amy, I feel the deep honesty and vulnerability in your well-crafted poem. It is good for me to read what others write about touch, as I am so conflicted about it. Your poem, even in its beauty, was painful, even embarrassing, for me to read. Don’t worry, this is helpful, as it helps me better to understand both my longing for touch and my autistic resistance to it. Thanks for letting me in to your experience.” She responded: “What a beautiful compliment. I can understand how complicated your feelings about touch are and I can’t imagine that internal conflict. I’m so glad that this gave you some perspective. Thank you for sharing your vulnerability!”
Those words: “I can’t imagine your internal conflict” about touch. There it is, my autism. A normal person craves the touch but does not have the resistance. I crave touch but resist. That is where I am hauntingly different. As I write this, it feels like my use of the word “different” is but a feeble euphemism. It feels like something in me is horribly broken, that I am not fully human. This feeling will pass. It always does. But until it does, the pain is severe.
A Brief Detour: Maybe I Could Become A Massage Therapist?
There was a time that I considered becoming a massage therapist, attending the local massage school. This is another way my longing for touch has spoken. Can you imagine? Me at a massage school? I’d be with a group of other students for whom touch is central in their lives, their relationship with the world. Doing touch exercises with people alarmingly comfortable with it. Maybe it would have been good for me. Or maybe I would have suffocated like the proverbial fish out of water.
I thought more about massage, about my experiences being massaged. I pictured myself on the table, draped in sheets, a skilled therapist working on me. Where am I? Often I distract myself from the massage, from the touch. I either try to enter constant conversation (difficult for me!). Or I draw myself away from my body, almost disassociate from it a bit. What would it be like to fully open to the massage, to immerse myself in it? I never realized it until this moment, as I write about it, that I brace myself against the touch of massage.
Where Do I Go From Here?
What advice might I receive from the advice givers? Just ignore the resistance and engage in touch: you will be glad you did. I guess it’s like when people say to introverts and the socially anxious: Just go to the party even when you don’t want to. You will have fun at the party. Really, you will!
Nope. At least not for me, at least not yet. Of course I can mask, I can touch others and pretend it’s natural and normal. Then watch my anxiety rise up and my energy drain away.
My need for touch, to be touched, remains. Do I contract out for touch, via massage therapists, professional cuddlers, barbers? Like I apparently pay for human connection via psychotherapy? Should I attend therapy with my wife to better connect physically? Do I take suggestions from articles on touch starvation, such as petting my cats, massaging myself, connecting with people through video chat, doing yoga, hugging a stuffed animal?
I Guess This Story Ends Here (for now)
If I could end this piece on a happy note, I would. If I could offer encouraging advice to myself, to you who reads this, I would. But I cannot. The truth is I don’t know what to do, even now that I have a deeper understanding of the issues. Perhaps I will live with this painfully unfulfilled need for the remainder of my years, much like a paralyzed person who longs to walk again. Or might I overcome my resistance to touch, through some therapy I haven’t tried or an unforeseen epiphany? Or will I discover a middle way? I don’t know. For now, it hurts, it simply hurts.
And so I leave you with this strand of music unresolved, the final note longing to be played but remains waiting. I search for any phrase that would complete the song.
Wait, I Lied, I’m Not Done
For a moment yesterday, my ADHD brain overcame my autistic one and acted on impulse. I scheduled an appointment with the massage school’s student clinic. The students practice on me, I get a massage at a greatly reduced price. The opening was for that very night. Carrying my anxiety and wet armpits with me, I went to the appointment.
I gathered my intentions: Feel into the massage, try to recognize what I like and like less. What amount of pressure do I prefer? Tell the therapist I will not talk much so I can fully feel the massage. I checked in, filled out the forms, and discussed my needs and hopes for the massage. Then I went into the room, disrobed, crawled under the covers, and waited for the therapist to knock. The massage started.
My intensions were well-formed and helpful. I lay quietly, feeling into the therapist’s touch. I focused on pressure, realizing that I prefer firm pressure to light. I gave feedback to the therapist, often to increase her pressure. She may have been a student, but the massage was good for me. It touched my longing for touch. I walked away lighter and better regulated emotionally.
Maybe I’m on the right track… .
Please Share Your Comments
If you have thoughts or reactions to what I have written, please leave a comment. I read every one and usually respond. If you have suggestions for me, and for other people who share this struggle with me, I would be grateful.
