It is surprising how little we know about autism and breastfeeding. Reviewed the research evidence a few years back and found that there was limited information on the experiences of parents with autism. The only thing we knew about their challenges was the sensory differences they experienced when breastfeeding. We found that health professionals did not always communicate in a way that met the needs of autistic parents.
In our recently released Study, we asked 152 parents with autism from all over the UK to share their experiences of formula and breastfeeding. While 87% of mothers who breastfed expressed a strong desire to continue breastfeeding, only 54% of the parents interviewed admitted using infant formula. This is significantly lower than the rate we see in the UK, where 88% of babies are given infant formula for their first six months.
Nearly half of our respondents said that breastfeeding was a positive experience or enjoyable most of the time. It was also a positive experience to feel bonded with your baby and enjoy learning about breastfeeding.
Many of these parents with autism have reported sensory issues, and touch-related problems are the most common. The topics ranged in severity from “little hands” rubbing against their skin to infants sucking, biting, and “latching” onto the breast.
Some 10% of participants expressed their breastmilk every time. It is higher than what we would expect from a group of parents, as expressing breastmilk for every feed is only done if babies are premature or parents return to work. Some parents found the sound and feel of breast pumps to be too much for them.
Interception
The five basic senses of touch, sight, sound, taste, and smell are well-known. We also have three additional reasons, which are equally important. The vestibular system helps us keep our balance and move around safely; different interoceptive feelings than non-autistic individuals. For example, they may not be aware of their hunger or thirst or whether or not they need to go to the bathroom.
In relation to breastfeeding, 41% told us their interoceptive experience relating to the Milk Let-Down Reflex was painful or uncomfortable always or most of the time. The let-down reflex could be accompanied by a “feeling of dread.” One of our parents said that it “felt like an old-fashioned phone ringing” in her breasts.
Adaptation strategies
The intensity of frequent feedings can be overwhelming, whether our parents are formula or breastfed. This is an issue that parents of all kinds face. Autistic parents may find that their carefully developed strategies for staying regulated and reducing stress, such as taking a walk or watching an episode from a favorite TV show, are disrupted when they become new parents.
Parents in our Study were very creative and problem-solving when it came to feeding their infants. The parents in our Study adapted their clothing and distracted themselves by using a phone while providing.
In general, there is no evidence to suggest that the use of smartphones while breastfeeding negatively impacts bonding. These distractions should be encouraged by all parents who find breastfeeding difficult but still want to continue.
Despite 76% of parents receiving some breastfeeding support, a staggering 71% still felt unsupported. There was not enough breastfeeding support and conflicting health information from professionals. Non-autistic parents also expressed these concerns.
It also appears that those supporting infant feeding, such as midwives and health visitors, did not have a good understanding of autistic communication. For example, some parents felt they were not listened to or that their concerns were dismissed.
Some parents also felt that the staff didn’t seem to understand autistic people’s specific sensory and interoceptive needs while breastfeeding.
There is always room for improvement.
Our Study shows that those who provide infant feeding support need to understand autism better. This situation in England can be improved by the national autism training program, which was developed and delivered by autistic adults. Similar programs should be introduced in other UK nations.
Autistic parents, partners, and others who support them should be more aware of possible feeding issues so that they are better prepared. To help parents and health professionals with autism understand this information, we have created a series of videos.