The Autistic Lactation Experience. It’s no Different and So Different:
By Genny Stiller, IBCLC
This story begins in the usual way, with you walking in to see your next lactation client, they are wearing gloves to change their baby’s diaper. There’s an element of surprise seeing a parent work so hard to avoid feeling the wetness of baby wipes and saturated diapers. If we’re being honest here, it’s both unexpected and intriguing to learn that the gloves are from a personal stock inside their diaper bag. They come prepared.
The dialog between you and the client unveils concerns about oversupply, the intense feelings of fullness, and extreme difficulty sitting still for 20 minutes every hour, all day long. They mention they’ve been advised by friends and family to enjoy the down time, but they simply can not. The don’t feel prepared.
I feel confident saying that most of us have met someone autistic in our lifetime. But what you may not have thought about is the space where autism and lactation support intersect. In recognition of Autism Acceptance Month, I will illuminate that space and invite you to see it with more clarity. Whether it’s your first time learning about autism and lactation or you’re a seasoned neurodivergent lactation support person, this is 100% relevant to your practice. And, what I have to say next might go against what you thought you knew about the autistic lactation experience.
It’s no different. And yet, it’s so different. Autism is magic, it’s challenge, it’s a super power and it’s a micro power. It’s also a developmental condition that impacts emotional regulation, sensory processing, coordination, speech, and more. Autism is vibrant, dynamic, and indivisible from the person. I can’t fully deliver or articulate the many individual expressions and nuances, but I can confidently say this: If you’ve met one autistic person, you’ve only met ONE autistic person.
Now that we’ve (un)covered what Autism is, let’s talk about what it’s not. It is not something that a person can press pause on or separate from for a few hours. It isn’t “always an issue”. It is not a primary or secondary lactation dysfunction. And yet it’s completely possible that all, some, or none of the aforementioned aspects of magic, challenge, and superpowers will show up as part of the lactation experience. While we don’t need to be experts in autism to support effectively, we do need to understand that the lactation experience can look different. Or not.
This isn’t a motion to modify support to make things easier, it’s a call to action to acknowledge the autistic lactation experience exactly how it is. It’s an invitation to see that space where the typical lactation concerns we know so well intersect with the nuances of the autistic lactation experience we’re still learning about. We all have differences, needs, and distinct parts of ourselves that make us who we are as individuals. Diversity in our nervous systems is reflected in the way we organize, process, and express responses. Variations like a strong need for movement, necessity of routines, hyper-focus, attentiveness to everything and nothing…they are all part of the autismagic.
The typical experiences of lactation like leaking milk and frequent feedings, for example, can vary across an expansive spectrum. Pun totally intended here. Rather than imagining this spectrum as linear, try to visualize it as a kaleidoscope with variation and dimension. For some, the feeling of fullness preceding leaking can be almost undetectable until there is severe engorgement and intense pain. Their individual nervous system responds differently and can necessitate a much higher amount of stimulation to trigger a response. In another part of that kaleidoscope is the experience of breast or chest fullness that can be felt so briskly and viscerally with very little stimulation, and often without the distinct visual or physical appearance of engorgement. Additionally, scant amounts of leaking milk can be perceived as extremely alerting to the nervous system activating an intense sequence of processing that doesn’t immediately resolve after the trigger is discontinued.
What we cannot see is the heightened level of intensity that the lactating person is working through. Furthermore, these experiences are not mutually exclusive. It’s highly likely that an individual will be working concurrently through multiple sensory triggers of varying degrees and stages. The typical lactation experience can have over 40 sensory triggers during a single nursing session. When we do the math, we’re looking at 400-480 sensory triggers being processed in a single day, every day. I fully acknowledge that the autistic nursing person is working hard to process the same lactation experiences, differently.
Let’s walk back into that client visit for a moment. This time, we’ll prepare by putting on a sensory conscious lens and track the experience with an enhanced awareness of the autistic experience. What may have been overlooked initially was the work of the client processing the cacophony of sounds from the hallway, adjusting to the change in temperature from outside the exam room, the visceral experience of the skin on their chest expanding by the minute as they concurrently change their little one’s diaper, while waiting to have a deep conversation with a stranger. They were doing the hard work of processing.
The autistic lactation experience is different. It’s not something that needs to be fixed. The invisible load of sensory processing is heavy at times and manageable at others. By increasing our own understanding around the nuances of the autistic experience, we are more capable of appreciating the details in the space where autism and lactation intersect. In turn, our knowledge base grows and accessibility to care expands as we learn how to align with clients’ needs on another level. If you’re realizing you haven’t properly considered that lactation might look different for autistic parents, you’re right where you’re supposed to be.
If you’re recalling past encounters that felt unresolved, this might be why. Our role isn’t to see the unseen, but rather to hold space for individual lactation experiences, even if they are slightly out of focus initially. Clarity in this work comes from continuing education, open dialog, listening, and practice.
The autistic lactation experience is no different and yet, it is so different. Demonstrate your interest and commitment to neurodivergent affirming lactation support by including autism spectrum condition in the past medical history and add sensory sensitivities alongside the food sensitivities portion of your current clinical practice forms. Start a conversation with colleagues about the necessity of learning more about the autistic lactation experience and try on that sensory conscious lens to see the lactation experience differently.
I recognize our time together is brief, and you’ve got to go soon, so thank you for spending this time with me today. I look forward to connecting with you in future posts and educational opportunities. Additionally, I want to extend a sincere gesture of gratitude to USLCA for continuing to provide a platform for this work in the lactation space.
Genny Stiller @ The Neurodiverse Lactation Education Center
Genny Stiller, IBCLC, Genny Stiller earned a Master of Science in Nursing degree in 2005, board certified as a Pediatric Nurse Practitioner in 2006, became an IBCLC in 2017, and certified as Neurodiverse Lactation Specialist in 2022. She has been humans, big and small for over 20 years. Her area of special interest is neurodivergent lactation support and speaks internationally on the subject. She currently manages the Neurodiverse Lactation Education Center and homeschools 3 magical beings.