Wendy
Graves could not shake her growing sense of dread. Even before reports of a
severe shortage of baby formula emerged in early May in the
US, she had
returned from two grocery shopping trips empty-handed.
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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
four years old, is also autistic and does not eat much beyond pasta and veggie
straws. To fulfill her nutritional needs, 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,
Arkansas, to find a store with some in stock. She 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,” Graves said. “I’ve had to pay hundreds of additional
dollars to cover shipping and just get the formula she’s dependent on.”
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 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.”
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, 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, 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 do
not have autism. Some mothers in Wilson’s study tended to have muted signals
and could not 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 were too stressful to
bear.
The impact of this
stress was not 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 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.
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