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Mothers with autism, who are less likely than others to breastfeed, have been hit particularly hard by the baby formula shortage.
Wendy Graves couldn’t shake her growing sense of dread. Even before reports of a severe shortage of baby formula emerged in early May, she had returned from two grocery shopping trips empty-handed.
Mx. Graves, who is autistic and particularly sensitive to touch, has relied on formula since giving birth to her daughter in 2018. She had wanted to breastfeed, at first, but changed her mind when the hospital’s lactation consultant grabbed her breasts without warning.
Her daughter, now 4, is also autistic and doesn’t eat much beyond pasta and veggie straws. To fulfill her nutritional needs, Mx. Graves needs about six cans of hypoallergenic formula a month. But that specialized type has been especially limited during the shortage, requiring her to drive hours from her home in Hope, Ark., to find a store with some in stock. She has even enlisted friends, family and strangers on Facebook support groups for neurodivergent parents to ship her whatever they can find.
“I’m in a hole, and it’s just snowballing,” Mx. Graves said. “I’ve had to pay hundreds of additional dollars to cover shipping and just get the formula she’s dependent on.”
Months into the formula crisis, millions of American families are still in the lurch. In mid-September, stores were about 19 percent short of being fully stocked for powdered formula, according to the market research firm IRI. Mothers with autism, who are less likely to breastfeed, have been hit particularly hard.
In a recent review, British researchers found several reasons for low breastfeeding rates among autistic women. For some, motherhood means less control over day-to-day routines and a higher risk of anxiety and depression. Lactation services are rarely tailored for autistic people, leading to uncomfortable situations that may deter women like Mx. Graves, who also has Ehlers-Danlos syndrome, a rare connective tissue disorder.
“The gap is already there for the white middle-class mum, who is still not getting enough support,” said Aimee Grant, a researcher at Swansea University’s center for Lactation, Infant Feeding and Translational Research, who helped write the review. “So when we add in extra barriers like being autistic and from a marginalized group, then those issues get worse.”
Dr. Grant has studied breastfeeding for years. She decided to look at autistic mothers in 2019, when she was diagnosed with autism.
One of the most common hurdles for autistic mothers is their sensitivity to touch, researchers said. Breastfeeding is an intense physical experience. A hungry infant, snuggled warm against the chest, might kick or send her fists flailing, only to latch onto a breast that is sore and engorged.
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 to reach her breastfeeding 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.
Researchers also have tips for autistic people expecting a child. Speaking with a lactation consultant ahead of time can ease anxiety around breastfeeding. Some mothers may also find comfort in connecting with other autistic parents who chose to breastfeed.
Jay Eveson-Egler and Tayler Egler are autistic and expecting a baby girl in October. Although the couple have been preparing for months with the help of a care team that specializes in advising neurodiverse individuals on childbirth, breastfeeding and postpartum depression, the formula shortage has left them feeling anxious and uncertain.
Jay, who is carrying the fetus, fully expects to have sensory overload from breastfeeding, and baby formula was going to be the family’s backup. With that support in jeopardy because of the long formula shortage, Jay has been having recurring nightmares of not being able to adequately care for the pair’s newborn.
As a result of these uncertain circumstances, Tayler, who is more sensitive to sensory stimuli than is Jay, has nevertheless started taking medication to induce lactation. The parents are both determined to breastfeed their baby, despite their sensory challenges.
“People oftentimes don’t think that autistic people can be parents or even have the capacity to be parents,” Tayler said. “We do need more understanding from the medical system.”