Unraveling the Mystery of Touch in the Autistic Brain

This is a guest post from ASF Science Writer Jerri Sparks Kaiser. Jerri, a parent of four children, one of whom has autism, blogs for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.

Me: Jared, do you like to be hugged?

Jared: I don’t know.  Kind of.

Me: How does the hug make you feel?

Jared: Pretty happy, bye.

Then he hung up on me.  Such is the life of the mother of an autistic child.  It is so hard to get a conversation out of him, much less a phone conversation with its inherent lack of visual cues and persistently following him around the room.  Jared is also a teenager who wants to do his own thing.

The reason I asked Jared these questions is because a new study out of the Yale Child Study Center by Martha Kaiser (no relation) indicates that individuals with autistic traits may not process hugs as socially rewarding.  Specifically, two areas of the brain, the STS (superior temporal sulcus) and the OFC (orbitofrontal cortex), were found not to be stimulated during slow, light brushes with a watercolor brush.

In my own experience with my son Jared, I remember the day he was born when the nurse placed him in my arms.  I tried to initiate breastfeeding but Jared turned away.  I noticed then that whenever I stroked his cheek like the books said to stimulate the nursing instinct in your baby that my son turned the opposite direction.  I thought I was doing it wrong and I visited with several lactation consultants.  Nothing worked and finally my milk dried up at 12 weeks because Jared just didn’t get the sucking down properly.  I even pumped and used a crooked syringe designed to teach babies how to breastfeed, but nothing worked.  I was so immensely disappointed in myself and felt like a failure as a mother.  The unkind comments of disapproving moms at the mall when I pulled out Jared’s formula bottle added to that pain.  It is amazing how cruel people can be when they don’t know the situation.  To this day I feel like crying when I remember one woman saying “you do know that breast is best” as she shook her head at me.

What I came to realize years later is that not only did Jared have difficulty in the muscle movements needed to suck efficiently, he also did not crave that physical touch that my later born children did.  My three younger children would gently caress my arm, neck or chest area as they nursed and they would squeeze me with their other hand.  It was so enjoyable.  They also curled their body around mine as if we were still attached.  The only time Jared did that as a young infant and child was when he was terrified of something.

In fact, to this day Jared only seems to crave physical contact when he is in distress, such as when he has had a “bad moment” at school or the group home where he now lives or when he has been hospitalized for behavioral problems.  It is bittersweet that I can only get that bonding from him when he is in distress but I tell myself at least he needs me.

Recently Jared called me late at night from his group home, crying hysterically.  He had an altercation with another client at the group home, which is about an hour away from our home, and he wanted me to make him feel better.  I spoke to him in soothing tones over the phone, my heart breaking because I was not beside him to comfort him, and he slowly calmed down.  We did a visualization technique I learned from the book “When My Autism Gets Too Big.”  I guided him through deep breaths and encouraged him to close his eyes and rub his upper legs slowly as we both visualized the creek in Vail, Colorado or the beach at Martha’s Vineyard, two of our favorite vacation stays.

Then Jared asked sadly “Who is going to hug me?”  It was a remarkable thing for him to ask.  My heart was so broken by this point, but I said into the phone “I am, right now.  Wrap your arms around yourself and know that it is me.  I am coming through this phone to hug you right now.”

“Can you read me a story?” he then asked.  “Yes,” I said.  Then I recited “Good Night Moon” from memory and my son fell asleep.  Sometimes a virtual hug is all I can give my son, late at night and so far away.  Our journey with autism is not at all an easy one.  I take comfort in the fact that Jared does now ask for the occasional hug and every now and then tells me he loves me, maybe not always with words but actions.

The research may indicate there is no social reward but personally I feel the results of the study indicate a different way of expressing and processing the social reward.  Scientists just haven’t decoded the autistic brain’s response to social stimuli yet.  Different does not mean absent.

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