Autistic women and girls, like neurotypicals, expect their healthcare providers to understand them
The evolution of understanding of Autistic females is helping more medical and educational professionals learn their role in helping Autistic-girls and women exist at their highest potential in a world that still operates at biased baselines set for non-Autistics. In fact, with schools assessing and accommodating Autistic students earlier in life, more Autistic and neurodiverse people are entering adulthood with more information and acceptance about their difference and with agency over their learning and choice-making. Not only does this apply to academic settings, but it also applies to how Autistics experience, expect, and receive their health care and education. As health professionals, who pride ourselves in education and prevention, we must update our approaches to be inclusive to the emerging generations of adults who know more about how they learn than than anyone else.
And who are they? For the sake of this article, they are Autistic and neurodiverse women and female-identifying/perceived, a demographic of Autistics who have been underrepresented in conversations about Autism until recently.
Why are accommodations for Autistic birthing parents important?
Note: These accommodations can help any Autistic new parent, whether the birth parent or not.
In our educational link about Autism, you learned that Autistics have heightened sensory perception that could make sound, sights and touch especially overwhelming. While distracting and overwhelming scenarios are often faced by Autistics in many life situations, the birth and infant-care season presents a unique opportunity for supporters to help Autistic parents avoid trauma and anxiety with their birth and babies.
During action-filled interactions surrounding birth and infant care, particularly when time sensitive “performance” is expected, one can imagine the stress a person with sensory-processing challenges may experience. For instance, being in a birthing room, half-dressed, with lights that are too bright or too dark, with multiple providers coming in and out asking questions, touching personal areas, family giving opinions, etc.. To any person this would be overwhelming no matter how prepared, but to a person who struggles to process information, a birth space (even calm ones, and even those that have “good” birth outcomes) could be remembered as traumatic for a lifetime. Add to that situations which have high trauma-perception for any parent, like being transferred to from a home-birth setting, having an unplanned surgical birth, having a NICU team whisk a baby away, all without transparent communication, and the likelihood of added trauma increases exponentially for anyone, and for an Autistic or neurodiverse parent, situations like these could present significant sensory challenges that are hard to process, both emotionally and technically.
From prenatal appointments, to infant-feeding consultations, all new parents seemingly experience more questions and teaching than they might during other times in their lives. While the pace of these interactions may seem like a lot even to Allistic (non-Autistic) parents, to an Autistic parent who organizes thoughts better in silence, or who may need extra time to express their thoughts and questions, the pressures surrounding basic appointments can be very overwhelming. While not all Autistics shut down or enter into a “mental block” when overwhelmed many do—but preventing this can be as simple as a provider slowing down their pace, recapping what’s been shared, or stopping frequently to give opportunities for questions.
Accounting for a processing vulnerability does not mean providing less information or less complex concepts (unless intellectually applicable) it simply means slowing down, and presenting ideas in ways that can be retained and used when needed.
What can you change?
While my suggestions are inherently biased toward birth-care professionals, they can be applied to consulting and counseling services of all types and to all genders of Autistic people. In fact, once implemented, you may find that they improve experiences for all of your clients. Know that these are not all-encompassing recommendations, and that you may need to do more to accommodate the needs of all of the neurodiverse people you serve. The ideas shared here are intended as a starting place yet know that the best way to learn how to serve anyone, and especially an Autistic or neurodiverse person is by actually asking them what they need.
How to change (for the better)
Like anything, change starts within oneself, so beginning by creating an accepting environment for atypical and Autistic thinkers will start with identifying, accepting and updating aspects of your practice that need it. Whether you’re a solo-practioner or a member of a group, taking inventory of things you can improve and then genuinely changing individual behaviors to be inclusive and equitable will reflect on your practice’s overall and eventual acceptance of Autism and neurodiversity.
As you start planning your patient/client experience for neurodiverse and Autistic people:
• Accept that the onus of need-meeting is yours, not your client’s. They came to you for help (and unless you’re a neuropsychologist, they likely didn’t come to you for help with being Autistic, they came for what you specialize in). Regardless of your personal neurotype, considering theirs in how you provide care is necessary.
• Update what you previously knew about Autism by devouring every corner of this resource page and the vast resources written by Autistics online.
• Understand what masking means in the context of Autism, and in particular, the nuances and dangers (to them) of encouraging masking in Autistic females/identifying…and provide services that help clients unmask when with you without being judged.
• Know that it is ok to ask your clients/patients about their neurodiversity, processing differences and learning preferences.
Consider adding opportunities to your intake forms for self-identification (without expecting disclosure).
Examples of intake questions:
“Are you a neurodiverse thinker (have ADHD, are Autistic, etc)? If so (and if you’re comfortable sharing) please tell us what we can do to make your experience with us more valuable.”
”Please help us understand how you learn best.”
”What sensory accommodations would you like us to make during your visit with us?”
“Do you need a quiet space in our office?”
“How comfortable are you learning with multiple people present in the consult?”
• Update your use of language and terminology surrounding neurodiversity and Autism; identify and change abliest approaches (you can learn about this in our resource page).
What you can start doing right away:
• Provide anticipatory guidance in a layered approach: provide verbal, written material as well as videos of concepts you have or will teach. Having multiple venues to reinforce teaching is great for everyone, and very good for Autustics.
• Watch your expressions of frustrations and be mindful of any patronizing or cutesy tone that could cause a person to feel inferior. Autistics may be stereotyped as having issues expressing their feelings via gestures or facial expressions, but most are seasoned observers and can be more perceptive to expressions than words.
• Check your use of analogies, sarcasm, and terms not easily understood by literal thinkers (i.e. in lactation, these would be terms like “liquid-gold”, “nose-to-nipple”, “nursing-nest”, etc.).
• Allow extra thought-processing time when asking questions
• Ask for consent to hug or touch (with any person, always!)
• Don’t automatically interpret disinterest from an Autistic person because eye contact or tone isn’t mirrored
Note: Ask about trauma if it is suspected, but also know that some sensory issues look like trauma (i.e. low gaze, fast pace talking, high-anxiety, mentally-stuck, etc.) and that insisting that sensory issues are trauma when they are actually not, can cause client-distrust and create trauma where it did not exist. If you need help teasing out trauma-related reactions vs Autism-related behaviors, discuss your case with an experienced neuropsychologist.
My hope is that this article and it’s resource page have not only given seeds of acceptance and understanding to providers, but that those who learned from it sow these seeds in themselves and them in those they mentor.