Nothing about us without us
Who: Wilson and colleagues
Journal: MCN in Advance
Title: Breastfeeding Experiences of Autistic Women
Breastfeeding Experiences of Autistic Women
This study wanted to look into the experiences of autistic adults who breastfeed.
They recruited breastfeeding autistic adults through Facebook groups. All of the participants were over the age of 18, identified as a woman, spoke English, and who breastfed at least one infant.
They had 23 participants. 20 were Caucasian, 17 were married, and the majority had attended university.
There were three overall themes, and three subthemes.
- Intense Sensory Perceptions
- Focused Determination
- One Size doesn’t Fit All
Intense Sensory Perceptions: Overstimulated
All participants reported breastfeeding as overstimulating, leading to discomfort & extreme irritability. Milk let-down (release), infant sounds, and sucking sensations were very overstimulating, and many described it as “sensory weirdness”.
Many found coping strategies, including distracting themselves, and physical barriers like nipple shields.
“People need to recognize boundaries. I use nipple shields so there’s a little boundary space between me and my baby.”
Intense Sensory Perceptions: Overtouched
Uncomfortable touch included skin-to-skin contact, the baby latching onto the breast, and sucking sensations produced by the baby or by a pump.
They also found being touched by health care professionals to be very uncomfortable, but didn’t always feel able to ask them to limit their touching.
“The midwives would physically grab my breast to try and get him to latch. I felt so uncomfortable having her touch me but I didn’t feel confident enough to tell them to stop.”
Intense Sensory Perceptions: Overwhelmed
They felt overwhelmed by anxiety, frustration, and stress, which led to meltdowns.
“It’s usually when he is crying. I feel overwhelmed, like I can’t take it anymore.”
“I try to focus my thoughts, try to get use to the sensation, but I often feel overwhelmed.”
Many women said they experienced breastfeeding as a hyperfocus, and became engrossed in learning about breastfeeding to the detriment of other things. They felt they were able to become a breastfeeding expert. They described it as an obsession, and they described a determination to breastfeed, even if that meant not asking for help.
“I was obsessed-had a one-track mind… I knew intellectually I was an expert, but it was hard in practice. I felt so knowledgeable, but breastfeeding was different.”
One Size doesn’t Fit All
Many women said that as each autistic person is unique, their breastfeeding experiences will be unique. They wanted to be seen and understood as individuals. However, many felt misunderstood. They said there was a need for supportive acceptance.
“I think we need understanding, acceptance, respect, and nurturing towards us. Don’t view us as broken and less, but different. It’s a neurological difference-don’t judge us if we seem less attached emotionally.”
“My face and tone are not indicators of how much pain or turmoil I am in. I don’t have control of the tone of my voice. Don’t imply my tone is what my mood is. Don’t try to make eye contact. It isn’t necessary. Eye contact is a socially constructed thing. Basically, don’t assume we are all terrible mothers. It is demeaning.”
Clinical Nursing Implications
Ask consent before touching, even if the touch is casual.
Explain what you will do before you do it.
Anticipate intense sensory perceptions and be aware that this can cause anxiety, frustration, and stress.
Be aware that while autistic people may be very well informed, they may still need step-by-step instruction & support.
Understand that many autistic adults may mask, and appreciate that each individual is unique. Do not view autistic people as broken or less, but different.
Preserving continuity of care can reduce anxiety.
Ask for clarification of understanding.
Clinical Nursing Implications
• To avoid sensory overstimulation, nurses should ask permission before
touching during treatment, even with casual bodily contact.
• Anticipate intense sensory perceptions at the beginning of each interaction and adopt sensory sensitivity to touch, sound, smell, and lighting.
• Be aware that women are concerned about the nurse’s perception of them, desiring an appreciation of their uniqueness.
• To enhance learning, use a variety of education methods including step-by-step verbal instructions, videos, illustrations, demonstration, and the teach-back method.
• To diminish social anxieties, should strive for continuity of care in nurse staffing so new relationships do not need to be repeatedly developed