These sensations are uncomfortable and painful for many women, but autistic mothers’ heightened perception can make breastfeeding “a sensory nightmare,” said Jane Wilson, an associate professor of nursing at Palm Beach Atlantic University who specializes in maternal and child health.
In 2020, Dr. Wilson teamed up with a colleague, Bri Andrassy, to run a small study on the breastfeeding experiences of autistic mothers around the world. They interviewed 23 autistic women, 14 of whom lived in the U.S., asking only one question: “Can you tell us about your breastfeeding experience?”
Most women answered the question by talking about feeling “touched out” while breastfeeding. Studies have shown that autistic individuals experience body cues — like shivers, a tight stomach or a full bladder — differently from people who don’t have autism. Some mothers in Dr. Wilson’s study tended to have muted signals and couldn’t sense pain until their nipples were a bloody mess. Others, however, had overactive body cues, making the act of breastfeeding incredibly painful.
Sam, a 40-year-old woman in Washington, struggled to produce enough milk after giving birth to her daughter. Her lactation specialist advised her to pump regularly. But the cold, hard pumping parts and the machine’s loud, rhythmic noise was too stressful to bear.
The impact of this stress wasn’t only psychological; it affected how much milk Sam could produce after 30 minutes of pumping. “I would sometimes look at it and just want to cry,” said Sam, who asked to withhold her last name to protect her privacy. “You couldn’t even fill a shot glass.”
At five months, doctors advised feeding her baby a hypoallergenic formula to help her gain weight. Although Sam still tried to occasionally breastfeed her daughter, she experienced intense grief for not being able toreach herbreastfeeding goals.
To improve these mothers’ experiences with maternity care, experts said that professionals should ideally be trained by an autistic individual on how to communicate with and support autistic parents. Even simple considerations — like never touching a mother’s breasts without asking for permission, or dimming bright lights in the hospital room — can make a big difference, they said.