The Access Needs I Didn’t Know I Had
How discovering my neurodivergent access needs changed the way I experienced pregnancy.
Around this time 3 years ago I was a little over halfway through my pregnancy perusing the Disabled Parenting Project’s Facebook group and came across a post from Dr. Kara Ayers looking for disabled pregnant people who would be willing to participate in a new intervention she was developing called an Accessible Pregnancy Action Plan. I saw it and immediately knew I wanted in and looked for how to sign up.
I had been doing all of this work on my own trying to identify my needs and figuring out how to communicate them. Not having to build that from scratch when I was already doing so much additional cognitive and emotional labor to arrange a COVID-safer pregnancy and birth (not to mention physical labor growing a baby) felt like such a relief. To be held by someone else instead of holding it all together myself! I also wanted my experience included in the development of this intervention and I wanted COVID to be an explicit consideration in that room. I completed the survey and waited. When I got a response from Dr. Ayers that I was eligible, and to book my first session I was so excited.
Preparing for physical safety.
Going into pregnancy my main concerns were around my hypermobile Ehlers-Danlos Syndrome and COVID safety. I was worried about the way my body might be impacted by my pregnancy, how it may worsen my existing issues or present new problems. hEDS on its own does not make a high risk pregnancy, but I was worried about whether my providers would have enough knowledge about it (or not) to keep me safe and avoid treatments that might further harm me.
The Ehlers-Danlos Society had not yet published the clinical guidelines for pregnancy that would come a year later. I was also extremely worried about COVID safety. In early 2023, when I had gotten pregnant, most places had started to drop COVID safety mitigations despite the fact that it's (still, even today) an ongoing pandemic, and pregnant people are at high risk for severe COVID infection. I felt fear, anger, and disbelief that the midwifery OBGYN practice I went to, which primarily sees pregnant people who are by definition at high risk for severe COVID infection, wasn't practicing any mitigations anymore.
Physical safety wasn’t my only concern.
Physical safety wasn’t my only concern. I had a history of PMDD and knew that meant I may be at a greater risk for postnatal mood disorders. And while I didn’t have a formal ADHD or autism diagnosis at the time I suspected one or both and knew from a lifetime of living with my brain and nervous system that they operated differently. From almost a decade of living with poorly understood chronic illness, I’ve found what works best for me is thorough, careful planning.
Being supported by someone who understood
The APAP sessions themselves were invaluable. I was one of Dr. Ayers’ first participants while the intervention was still being developed (she was both my facilitator and the researcher), and would be the second birth during the research project. Working with a peer facilitator who was also a disabled parent made a huge difference because I didn’t feel like I had to explain myself or justify anything or navigate the stigma that might otherwise be present. She already knew it and felt it. It was important to me that I wouldn’t be patronized or talked down to and she didn’t do any of that. My facilitator didn’t assume she knew more than me about my situation. She held me as the expert in my own life and my own needs. But she also had the context of living as a disabled parent which also meant that I didn’t have to completely explain everything from scratch either.
What Matters Most?
The central question that follows through the APAP process is “What matters most?”
What matters most to me during pregnancy? During birth and labor? Postpartum?
Dr. Ayers described the sessions as grounded in health empowerment theory and self-determination theory (which delighted the coach inside me). She said the APAP helps to:
“remind you that what matters to you matters, because when you have this whole swirl of other people and other parties around you it can be easy to feel lost in that or like yours aren’t as important.”
Every pregnant person gets lots of messages about what should matter most to them but they may not align. Maybe it’s my health, or my comfort—lots of messages are that it should be your baby, but the APAP does not make that assumption.
More than a birth plan
We spent a little bit of time in our first session talking about how this is different from a birth plan (and I’d say complementary to it!). The part that is most different is that an APAP includes the environmental, societal, and cultural factors of disability. This is also what made it most different compared to every other kind of support care I sought out and received during pregnancy. While the end result of this was an actual plan, the process of creating it was just as meaningful too. During one of our sessions Dr. Ayers shared a list of accommodations and supports categorized by type of disability and my homework was to identify what applied to me and add any I didn’t see there. While looking through the list I saw things on there that I didn’t know I could even ask for! Things that I didn’t know counted as accommodations or supports.
Some that I didn’t even know I needed until I saw it and recognized instantly how that would support me.
What surprised me most was that many of these things were actually neurodivergent access needs that I hadn’t ever named as such before or hadn’t known that I was “allowed” to have.
Things like:
Checking for understanding
Providing information in advance
Providing written summaries
Limiting touch
Closed captions and recording options for telehealth
Writing instructions, timelines, or what to expect on a whiteboard or notepad
Give me additional time to think and speak
A support person to discuss medical decisions with during visits
Need for reduced sensory input during birth/labor and postpartum.
The difference that information in advance can make.
Going through and highlighting them from the larger list brought a lot of what I had experienced in the first half of my pregnancy into focus. At one of my first appointments, the midwife explained how I would be seen once a month for a while, then every two weeks, and then toward the end of pregnancy weekly, and that they would do an anatomy scan at 20 weeks, and a gestational diabetes screen at 24 weeks, etc.
I remember I asked her if they had a handout, even just a one-pager that listed this all out so I could be prepared in advance for what to expect and she looked at me blankly and said no.
I explained to her how helpful that would be because otherwise here I am just spending a fair amount of our limited appointment time (hmm…maybe I should have added to my list longer appointments to account for processing and communication as an accommodation?) asking about what I could expect the “agenda” to be for the next couple of appointments.
A plan that could be shared.
The APAP itself ends up as both a multi-page document and a one-pager you can share with your providers (which they are much more likely to read than a multi-page document). I couldn’t fit all of these bullets on my one-pager so I selected a few and made sure to bring up the rest in my appointments otherwise and talk through them with all my support people and providers. Alongside the APAP I was also preparing with some forward planning for postpartum around postnatal mental health: a safety plan.
Safety planning was something a friend mentioned to me during my third trimester and I talked about it with my therapist who agreed it would be a good exercise to do. Creating a safety plan because of my PMDD history was a different kind of preparation but came from the same instinct of making sure my needs were met and that I would be safe. My loved ones care deeply for me and also want to see me healthy and well. They were very supportive when I shared my safety plan with them. Some even asked clarifying questions so they knew exactly what it meant.
What happened during labour and birth?
It’s hard to remember whether all of my accommodations were met. And I’m not really surprised by that, I was in labor, my brain was in outer space! My doula was there to be my brain on Earth and translate. Things like the whiteboard—I don’t think that happened, but I’m not sure if that’s because it wasn’t needed or was ignored. I do remember a dim rather than bright environment, few people, limited touch. The parts of my APAP about what mattered most during each phase absolutely were followed, namely COVID safety measures. The APAP didn’t make everything perfect, it didn’t eliminate uncertainty, but it absolutely gave us a resource to use and point to if and when it was needed whether preemptively or in the moment.
The needs did not end with birth.
Ultimately, the APAP process showed me that accommodations and supports for my neurodivergence in addition to my other disabilities are valid, can be communicated, and deserve to be supported. All of these accommodations I identified also don’t stop with birth. They’re still just as needed and valid and have bolstered my ability to communicate my needs and what matters most to me so that I can continue getting the kind of care I deserve.
I didn’t want to have to coordinate from scratch getting all my needs identified, communicated, and met while I was pregnant and managing everything else. I wanted someone to hold it with me who understood what it meant to be disabled and pregnant, someone who already understood many of the things about this experience that go unsaid. Frankly, this is what we all deserve, and this is why I now facilitate APAPs too.
About Erica Evans
Erica Evans is a disabled and neurodivergent parent, coach and fertility awareness educator. She supports disabled, chronically ill and neurodivergent people as they prepare for conception, pregnancy and the transition into parenthood.
Erica is also the host of the Disabled Parenthood Podcast, where disabled parents and parents-to-be have the honest conversations that are often missing from mainstream pregnancy and parenting spaces.
Most pregnancy and parenting advice was created around a non-disabled baseline. Erica’s work helps people explore what pregnancy and parenthood can look like when their body, brain or circumstances do not fit that assumed norm.
Instagram: @ericaevansofficial | @disabledparenthood
Website: ericaevans.com
Podcast: Disabled Parenthood Podcast