Breastfeeding can become a ‘sensory nightmare’ for autistic mothers

Wendy Graves was increasingly worried, even terrified. Before the media even started to report an acute shortage of infant formula in the United States in early May, she had returned from two trips to the supermarket empty-handed.

Graves, who is autistic and particularly sensitive to touch, has been relying on infant formula since having her daughter in 2018. She initially intended to breastfeed the baby, but changed her mind when the hospital’s lactation consultant touched her breasts without telling her beforehand. .

Her daughter, who is now four, is also autistic and doesn’t eat much of anything but pasta and vegetables cut into sticks. To meet his nutritional needs, Graves has to buy six cans of hypoallergenic formula a month.

But this special type has been particularly in short supply, forcing her to drive hours from her home in Hope, Arkansas, to a store that has a few cans in stock. Graves has even asked her friends, family and people she doesn’t know personally, participants in Facebook groups supporting neurodivergent parents, to buy her and send what they can.

“I’m in a bind, and the situation is only getting worse,” he said. “I’ve had to pay hundreds of extra dollars to cover shipping just to get the formula my daughter depends on.”

The infant formula shortage crisis began months ago, and millions of American families are still struggling. According to market research firm IRI, in mid-September there were still 19% left for stores to have a full stock of baby formula. Autistic mothers, who are less likely to breastfeed their children, have been especially affected.

In a recent review, British researchers identified several reasons for the low rate of autistic women who breastfeed their children. For some, being a mother means having less control over their routine, leading to an increased risk of anxiety and depression. Lactation services are rarely tailored for autistic people, and this leads to uncomfortable situations that can discourage women like Wendy Graves, who also has Ehlers-Danlos syndrome, a rare connective tissue disorder.

“It’s hard enough for the middle-class white mother, who still isn’t getting enough support,” said Aimee Grant, a researcher at Swansea University who helped write the review. “When you add the extra barriers, like being autistic and being part of a marginalized group, the problems get worse.”

Grant has been researching breastfeeding for years. In 2019, she decided to study autistic mothers, after receiving the diagnosis herself.

According to researchers, one of the most common obstacles for autistic mothers is their sensitivity to touch. Breastfeeding is an intense physical experience. A hungry baby, snuggled against its mother’s chest, may kick or shake its fists and then grab a nipple that is already painful and swollen.

These sensations are uncomfortable and painful for many women, but the heightened sensitivity of autistic mothers can turn breastfeeding into a “sensory nightmare,” according to Jane Wilson, a professor of nursing at Palm Beach Atlantic University and an expert in maternal and child health.

In 2020, Wilson and a colleague, Bri Andrassy, ​​conducted a small study on the experiences of autistic mothers around the world with breastfeeding. They interviewed 23 autistic women, 14 of whom lived in the United States, asking only one question: “Can you tell us about your breastfeeding experience?”

Most women said that physical contact during breastfeeding was excessive for them. Studies have shown that autistic people experience bodily signals — such as goosebumps, a tense stomach or a full bladder — differently from non-autistic people. Some of the women in Wilson’s study only felt pain when their nipples were already bleeding. Others, however, had hyperactive body signals, making the act of breastfeeding incredibly painful.

Sam, a 40-year-old woman from Washington, had difficulty producing enough milk after giving birth to her daughter. The lactation specialist advised her to pump milk regularly. But the cold, hard pump and the loud rhythmic noise it made were unbearable for her.

The impact of the stress generated by the breast pump was not just psychological: it affected the amount of milk Sam could produce after 30 minutes of pumping. “Sometimes I looked at it and wanted to cry,” she said, who asked that her surname not be given. “I couldn’t even fill a cup for a drink.”

When her daughter was five months old, doctors advised Sam to give her a hypoallergenic formula to help her gain weight. She still tried to continue breastfeeding occasionally, but felt intense sadness at not being able to reach her lactation goals.

To improve these mothers’ experience, experts said that professionals who provide care to breastfeeding mothers should ideally receive training from an autistic person in how to communicate with autistic mothers. Even simple considerations can make a big difference, they said — measures like never touching a mother’s breasts without asking permission or dimming the bright hospital room lighting.

The researchers also have advice for autistic people who are expecting a child. Talking to a lactation consultant before delivery can lessen anxiety around breastfeeding. Some mothers may also feel reassured if they can make contact with other autistic mothers who choose to breastfeed.

Jay Eveson-Egler and Tayler Egler are autistic and will have a daughter in October. The two have been preparing for months with the help of a team of professionals specializing in counseling neurodiverse individuals with childbirth, breastfeeding and postpartum depression. But the shortage of infant formula is causing them to feel anxiety and uncertainty.

Eveson-Egler, who is carrying the fetus, predicts she will experience sensory overload when breastfeeding and thought infant formula would help. With this support compromised due to a shortage of formula in the market, she has had recurring nightmares about not being able to properly care for her baby.

Due to the uncertain circumstances, Egler, who is more sensitive to sensory stimuli than Eveson-Egler, nevertheless began taking medications to induce lactation. Both mothers are determined to breastfeed their daughter, despite her sensory difficulties.

“A lot of people think that autistic people can’t be good mothers or aren’t capable of being mothers at all,” Egler said. “We need more understanding from the medical system.”