Episode 22: Autism and Pregnancy Loss: An Autistic Journey of Grief and Identity (featuring Dr. Kiley Hanish)
Dec 25, 2023
Show Notes:
Pregnancy loss is traumatic and the grief process that follows is complex. And when you are Autistic, the way you express grief and loss might not meet the expectations of society, which can result in feeling ashamed and isolated.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, speak with Dr. Kiley Hanish, a neurodivergent occupational therapist specializing in mental health during the perinatal period, about autistic grief and loss while focusing on pregnancy loss.
Both Dr. Neff and Kiley, who are both Autistic, experienced pregnancy loss and they talk about their experiences personally, within the medical system, going through pregnancy again after experiencing loss, having to parent their children after pregnancy loss, then sensory overwhelm that comes with pregnancy and parenting, and the ongoing process of grieving.
Top 3 reasons to listen to the entire episode:
- Hear about the profound grief associated not only with losing a child but also with the loss of one's identity when becoming a parent.
- Understand some of the many ways that grief can manifest, and learn how to incorporate rituals and practices into the grieving process to honor your loss that is tailored toward the needs of autistic individuals.
- Identify the ways that the healthcare system can improve the responses to individuals experiencing pregnancy loss to help create safety and reduce trauma in difficult times.
When experiencing loss, it’s not realistic to just “get over” the grief and move on. There are many complex emotions and often misunderstandings about what is the right way to deal with grief, especially when autism is brought into the equation. If you are experiencing this loss, you’re not alone and your experience is valid regardless of whether other people say you are “doing it right.”
More about Dr. Kiley Hanish:
Dr. Kiley Hanish is a neurodivergent occupational therapist specializing in mental health during the perinatal period, which includes pregnancy, postpartum, and perinatal loss. After suffering the stillbirth and loss of her first child Norbert, Kiley co-created the Emmy-nominated film Return To Zero to break the silence and stigma around pregnancy and infant loss for parents around the world. The film’s success and critical acclaim led to her non-profit organization Return to Zero: HOPE. This organization provides inclusive and compassionate education and support for bereaved families after pregnancy and infant loss. In addition, they provide training and support for health providers in order to foster more confidence when working with these families.
- Return to Zero: HOPE Website: https://rtzhope.org
- Kiley’s Instagram and Facebook: @rtzhope
Additional Resources Mentioned
- Worden’s Four Tasks Of Grieving: https://whatsyourgrief.com/wordens-four-tasks-of-mournin
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Transcript
DR. MEGAN NEFF: So, Patrick, I don't know if you know this, but October is a busy Awareness Month, especially, for the topics we talk about here on this podcast. It is ADHD Awareness Month, it's OCD Awareness Month, it's Depression Awareness Month, Dyslexia Awareness Month, and it's Pregnancy and Infant Loss Awareness Month, which is what we're going to be diving into today.
So, I do want to just offer kind of a gentle disclaimer, if you are in the process of trying to get pregnant or recently experienced a pregnancy loss, do take care of yourself while listening to this episode because we will be talking about pregnancy loss.
So, first, I just streamlined through the intro. Patrick, anything to add to the intro before I introduce our guest?
PATRICK CASALE: I have nothing to add. I appreciate you laying the groundwork, so that's where [CROSSTALK 00:01:00]-
DR. MEGAN NEFF: …role reversal, there's a role reversal happening here.
PATRICK CASALE: [INDISCERNIBLE 00:01:05]. I told Megan and Kiley before we got started, been up since 3:00 AM. So, I'll be here in existence, but maybe also not…
DR. MEGAN NEFF: Appreciate how you name how you can come into this space however you are. Yes, so we have Kiley on today, who is, do you go by doctor? Because you're a occupational therapist, right?
KILEY HANISH: Yeah.
DR. MEGAN NEFF: How do you introduce yourself?
KILEY HANISH: Well, my students call me Dr. Hanish, but Kiley is perfectly fine.
DR. MEGAN NEFF: Okay. So, Dr. Hanish or Kiley is an occupational therapist, autistic ADHDer, newly diagnosed, you mentioned. And you started a nonprofit around pregnancy loss I think to help families, but also to help educate the medical field around how they can be walking through families and people, walking through that process better. Do I have that right?
KILEY HANISH: Yes, yeah. So, we're supporting families who have experienced different types of losses. And then there's a lot of trauma that can be done, like with health care providers, and especially, in the hospital, and so they don't receive training in their formal education. And so how can we kind of share information to help them be more confident working with bereaved families, and then therefore reducing trauma and other negative mental health outcomes.
DR. MEGAN NEFF: I love that so much. I think I've mentioned it on here a few times, but I used to work as a therapist in an OB-GYN clinic. And this was an area where it was evident there was just so much growth for the medical community in how this process is handled. And yeah, I love your lens of reducing trauma.
So, yeah, I'm backing up bird eye view a little bit, we connected because you emailed me. We were asking folks for like topic ideas and you emailed me with four or five wonderful ideas, but one that caught my eye was autistic grief. And we've heard other followers ask for us to cover autistic grief as well. I think it is a really important and complex topic. So, we're going to be looking at that today, we're going to anchor in the experience of pregnancy loss.
Oh, partly you reached out because you heard me mention that I had had two pregnancy losses on the podcast, which you have a good ear because I think it was a really passing comment. But I also think once you've lived through pregnancy loss, you hear it when people talk about it.
Okay, that was a long-winded intro. To anchor our conversation today, we do have a broad framework we're going to follow. I'm going make it explicit because I think structure can be helpful. We're going to talk through different phases of the pregnancy loss experience. And I think this is really important to think through it in phases in the sense that this is actually something we know helps people walk through the grief process is when they can story tell and narrate their experiences.
So, we'll be talking about the acute phase of coming to know the processing around that, the postpartum experience, and then grieving itself. And when we get to that fourth part, we're going to globalize it to talk more broadly about autistic grief. Does that sound like I have that right Kiley of what we talked earlier?
KILEY HANISH: Yeah.
DR. MEGAN NEFF: Okay.
KILEY HANISH: And I think just so for other people who are listening that have not experienced pregnancy loss or maybe have but other types of loss, like loss, isn't only death, and that you can take what we're talking about and apply it to your own situation because it will be in some way relatable. It just may not be the exact same story. But I think there's a lot of lessons that can be just like, well, lessons learned, and then just like, exploring for yourself. Like, "Well, how did I react? And what, you know, my interactions with…?" I don't know, it's complicated for sure.
DR. MEGAN NEFF: Yeah. So, Kiley, can we go back to starting kind of at the beginning for you of your experience around pregnancy loss, but then also how you got interested in this topic of autistic grief, and then supporting families, and people through this process?
KILEY HANISH: Yeah, so yeah, I'll first start just by sharing, like setting the stage of like, my situation. So, 2005 I was pregnant with my first child. You know, everything was fine, you know, up until when I was 35 weeks pregnant, which is like five weeks before due date. And I started bleeding. And because it's my first child, like, you don't know what's normal, and what's not normal. And so my midwife was like, "Oh, you probably just lost your mucus plug."
And so I didn't think anything about it. I had no awareness of baby movement because no one told me to pay attention to it. And there's this, like, myth that babies slow down when they're, you know, getting bigger because there's less room, which is not true. But you know, there was no talk about paying attention to baby moving or anything. So, I wasn't even aware of baby movement. But thinking back I'm like, "Yeah, I didn't really feel him move."
So, when I went to the doctor the next day, they couldn't find a heartbeat, they did an ultrasound. And at that point, told me that he had passed away. And I went into immediate shock. I was by myself. I didn't know what to do, I didn't know what that meant. And it was just like, I feel like I really left my body.
And so, like, I said to the provider, I said, "Well, what am I supposed to do?" Like, I wanted to understand, like, okay, my baby is there but then what happens, you know? And I know, I've mentioned this to you before, but then, you know, she says, "Well, maybe you could cry." And I was just like, "No, that's not what I'm asking." I'm like, "I'm asking for you to tell me what is going to happen?" Because when you're that pregnant, you have to deliver your baby. Unless there's, like, a threat to your life, they're not going to do a C-section. But I'm like, "How does the baby come out?" Like, I don't know.
DR. MEGAN NEFF: Yeah.
KILEY HANISH: So, there was… go ahead.
DR. MEGAN NEFF: Maybe pause there just to, like, that feels really powerful of in that moment you needed to know what to expect to get back into your body, to get back to safety. And that probably really threw the medical provider off of like, where's the emotion? We should process the emotion and then talk about logistics, which I think would be a very allistic way of moving through grief. But for you, I almost wonder if you needed to know what to expect to have enough safety to experience your emotions.
KILEY HANISH: Yeah, I mean, it's like the [INDISCERNIBLE 00:10:06] right? Like, I'm just learning about myself. Like, with the autistic piece, the uncertainty brings so much more fear and anxiety in a situation that's already horrible. And from her, I got nothing. And I'm not going to go into details, but just like her obsessing about other things that were really not important, and then she sent me home. And I was already in labor, actually, which is really odd.
DR. MEGAN NEFF: It is odd.
KILEY HANISH: You know, and then even at the hospital the following day, very little telling me what was going to happen, what to expect, and then, also, like, once your baby is born, there are lots of things… this is going to sound creepy to some people, or strange, or whatever, but like, there's a lot of things you can do to make memories to parent your child that it seems strange to talk about, but it's like your only time with your baby.
DR. MEGAN NEFF: It's really important, yeah. I actually went to a training on this about how important it is to touch your baby, be with your baby, take pictures with your baby. And from an attachment lens, just how important that is. I literally have shivers talking about it and how rarely, parents are given that opportunity unless the medical system really understands how important that is.
KILEY HANISH: Yeah, and so it's just like, what I really needed was a guide. I mean, I needed the doctor, or the nurses, or social someone to be a guide. It's like, you haven't been through this, but here's what's going to happen, and here are things that you can choose to do if you want to do that could be helpful to you. And I didn't get any of that.
And so, like, the trauma in the hospital was so horrible. And then just, also, like, when you're in that state of shock, and I think this is anyone, it's like, then they took my baby out of the room, they put him in a box in front of me, like to take to the morgue. But then also you're just like, I can't even talk. Like, I don't even know what to say. And it's just like trauma upon trauma, was really, really hard for me.
So, I think that, like, there was just too much without any guidance, and I shut down for like six months. I don't remember very much from that six months following. So, that was kind of, I would say the, like, acute phase but it lingered.
DR. MEGAN NEFF: Well, it lingered… I mean, going back to those post-birthing rituals, it lingered partly because you didn't get, I mean, I'm sure it lingered for many reasons, but you didn't get to say goodbye and like I feel so much heaviness hearing you talk through that of it was such an ambiguous grief in the sense that there wasn't a goodbye and there wasn't clarity around what was happening and I think for any human that's incredibly difficult and then through being autistic on top of that, it's just so much.
KILEY HANISH: Yeah. So, do you want to share any of your experiences in terms of like finding out, like, that part?
DR. MEGAN NEFF: Yeah, I do. Yeah because I think there's some similar patterns. I think I also, and this is probably for my own self that I'm saying this. You know, I know that whenever we're comparing grief, that's not like a helpful thought experiment. I think it also, for me, I do want to name that it feels like we're comparing apples and oranges in the sense that from my own experience and walking with a lot of people through this first-trimester miscarriage,e 35-week stillbirth are very different experiences. So, I want to name that.
I did share some of that medical confusion. I've had two complicated first-trimester miscarriages, one in which, like my HCG kept going up, which is the hormone that says you're pregnant. So, there's about a three-week window where it's like, well, actually, maybe you're still pregnant. And I kept getting conflicting messages from nurses when I would call of like, "Well, your HCG is rising, but it's not doubling. Maybe they were twins, and you lost one, and another one's in there." So, there's like a three or four week, I was getting a lot of mixed information. And that was really hard for me of like, "Am I supposed to be grieving right now? Am I still pregnant?" So, just that.
And that's actually more common than I think people realize there can sometimes be this roller coaster, especially, in early pregnancy of maybe I'm losing the pregnancy, maybe I'm not.
And then my second pregnancy was a missed miscarriage, which means that a heartbeat never developed, but the miscarriage didn't organically happen. So, it wasn't identified till nine weeks.
And then, similarly, I didn't know what to ask and I didn't know what to look for. And I was reading a lot of things from like, kind of natural childbirth and midwives, and I love the work of midwives. And at the same time, I think it's very much set on typical pregnancies, a lot of the advice. And as an autistic person, I got really attached to the right way of being pregnant and the right way of walking through a pregnancy loss. And this was my second pregnancy loss and we very much wanted to have another child. So, I was convinced I shouldn't do a DNC because it might cause scarring, which could impact future pregnancies.
That lead to what I think at the end of it, I, essentially, was like in my first trimester hormones for 20 weeks because I started miscarrying at 12 weeks and then miscarried for eight weeks and should have sought medical advice, should have known what to ask for, but I didn't and I'm kind of has medical avoidance. So, I didn't actually get help until I started developing an infection.
So, there was a lot of uncertainty around those times. I wasn't advocating for myself very well and I think, partly, because I was also very shut down. I responded by shutting down, similarly. I was confused by kind of the absence of emotions during that period. So, yeah, that was my experience.
What happened when you went home from the hospital and when you made it through after those six months? You talked about six months of shutdown, what happened after that?
KILEY HANISH: Well, like I felt somewhere a shift inside of me of, like, the wanting to engage in life again. And that was like a month of that maybe, or maybe even less, and then I found out I was pregnant with my daughter which I hadn't had a chance to grieve. And then, like, grief process… whatever, and then pregnancy after loss is just like anxiety-
DR. MEGAN NEFF: So, anxiety. Oh, my gosh!
KILEY HANISH: …on steroids.
KILEY HANISH: It is anxiety on steroids, yeah.
DR. MEGAN NEFF: It's crazy.
KILEY HANISH: And so that was a whole nother thing.
DR. MEGAN NEFF: And did that, again, I'm thinking about potential education, like, when I was in the medical setting, I did a lot of education of like, after pregnancy loss there can be a lot of anxiety, you might find yourself resistant to attach to the baby growing.
KILEY HANISH: Yeah.
DR. MEGAN NEFF: Like, did anyone walk you through that?
KILEY HANISH: Yeah, which is why I created everything I created. I created the guide for the hospital. I mean, all because it's like, when I learned things like, well, people knew this, why didn't they tell me? You know, and it's like I feel like the OBs are dealing with the waist down. They don't want to touch the emotion piece. And if there's a problem, they don't know what to do. Nobody, like, unless you get fortunate to have a therapist who knows about this, really, it's like luck. No, there's nothing, you're just like going blindly into everything. And you feel like you're going crazy, you can't talk about how you're going crazy because other people are going to think you're crazy.
DR. MEGAN NEFF: Well, and especially, when you start showing, and people start coming up to you. I mean, like outside of pregnancy loss, right? Like, I hated being pregnant. When people would come up to me and touch me, and like, be like, "Are you so excited." And then I'm expected to have this positive emotion, right? That was just hard for me, even with my first pregnancy before any pregnancy losses. But throw in there, like, I am so anxious that this baby will survive, and then strangers are coming up and like expecting you to be all teary. Did you have some of that experience?
KILEY HANISH: Yeah. Well, I mean, for me, it was my first, also. So, like, when I was pregnant again, like, "Oh, is this your first?" And then the whole question was like, "Well, do I tell them about, well, I had a baby that died or do I not?" And most of the time, personally, I feel like my business is my business. And I don't need to tell other people my business, you know? But you feel like you're like, kind of, disrespecting your child.
DR. MEGAN NEFF: Absolutely, absolutely.
KILEY HANISH: You know?
DR. MEGAN NEFF: And it's that small talk, right? It's small talk that is so painful. Like, there's so many questions we ask pregnant people I've since learned not to ask like, "Are you planning to have more? Is this your first?" Like, things that we think are small talk is not small talk. And that's for non-autistic people, too.
KILEY HANISH: Yeah, yeah.
DR. MEGAN NEFF: Let alone throw in the, like, we hate small talk component.
KILEY HANISH: Yeah. I had a thought, but it went. Oh, no, I know what I was going to say, in the pregnancy after last piece, like, there was like, what you were starting to say is like, denial of the pregnancy, non-attachment, which is called emotional cushioning. So, you're like-
DR. MEGAN NEFF: Oh, I like that term.
KILEY HANISH: I found that word somewhere recently and I'm like, "Oh, I like the term." You know? And so, it's like, oh, there's an explanation of, like, fear of getting attached because maybe the baby will die. And like the thought is, well, if I'm not as attached, and the baby dies, it won't hurt as bad. Which is a joke, but it's your brain trying to protect itself. Yeah, and just like not, like, I didn't buy anything. I didn't want a shower. I just I was like, "No, we're no, we're not doing anything to prepare." Like, so I did nothing.
DR. MEGAN NEFF: So, even setting like setting up a nursery or a lot of the things, you did none of that.
KILEY HANISH: The second time no because I did it the first time.
DR. MEGAN NEFF: Yeah, yeah.
KILEY HANISH: And then I had to take it all down. So, then I was like, "No way."
DR. MEGAN NEFF: Yeah, it's actually really logical.
KILEY HANISH: Yeah. And then I will just throw in here, like, looking at our agenda because agenda is postpartum. So, I will say after you lose a baby, even though your baby's not living, you are still in postpartum. But I was in such shock and like, disorientation. It didn't really matter.
But after my daughter was born, my second pregnancy, I went into, I don't even know what it was, undiagnosed for 10 years, whatever. I just suffered a lot. But it was like this total hypervigilance, anxiety. I mean, so I first diagnosed myself with like postpartum PTSD, like, a few years ago, but now I'm wondering is like how much is it like sensory overload of being a parent? Like, I mean, or both?
DR. MEGAN NEFF: I would argue both-
KILEY HANISH: Yeah, and so-
DR. MEGAN NEFF: [INDISCERNIBLE 00:24:29] on top of each other in really brutal ways.
KILEY HANISH: I feel like… and this has nothing to like, say bad things about my children, but becoming a parent broke me. Like, it turned me crazy, into like, my mental health it just was never the same and I think part of it's like, with things I used to do to self-regulate that I didn't know where self-regulation strategies were no longer possible once I have children. And just the feeling of like being claustrophobic, and constantly on, and all of that, so…
DR. MEGAN NEFF: Yeah, Kylie, first of all, just thank you for saying that. Thank you for saying becoming a parent broke me. I think, again, like we've got to hold space for so many complex emotions. And I think this gets really tricky to talk about as a parent. Of course, we love our children, I'm so thankful for my children, I wouldn't have life any other way. But I feel similarly.
Like, so my children are now 13 and 10. So, I'm through the thick of it, I would say. Those 10 years, especially, those five years, when they were like two neurodivergent children, I didn't know were neurodivergent, no one was sleeping. They're sensory seekers. Like, I was so, first of, all tired and I think partly because of the pregnancies and complications my body felt very broken. I wasn't sleeping, being touched, and sounds all of the time, having a hyperverbal toddler talking all the time. Like, for someone with a sensitive sensory system, that's a lot to absorb. And I think there can be a lot of shame, especially, for mothers around, like, why is it so hard? And I did the hyper-vigilant thing, especially, with my second. Like, it's true.
KILEY HANISH: Yeah, and you're worried they're going to die. Like, constantly, like, are they breathing?
DR. MEGAN NEFF: Yeah, yeah, all that.
KILEY HANISH: So, it's just so complex, all of it.
DR. MEGAN NEFF: Yeah.
PATRICK CASALE: I imagine that there's this, like, really confusing simultaneously, like, held grief experience. Obviously, I cannot relate, but where it's not only postpartum, and grief, and grief around loss, but then there's also grief around loss of identity because as a parent your identity has completely shifted and changing. And then, you have to hold space for, I'm grieving the loss of who I was, or what my role was, or how I moved through the world. Now, I'm also grieving this newfound role in my life and I'm kind of, it sounds like there's a lot of shame-inducing experience too, of like, I'm not getting it right? Why do I feel this way? That's so complicated and that's so heavy to have to carry.
DR. MEGAN NEFF: I love that, Patrick, that inclusion of identity, I don't know about your experience, Kiley, but like that was huge for me. I was kind of coming out of academia, I had just finished my first graduate degree, and I thought I was going to love being a stay-at-home mom. I now understand like, how much of my identity comes through my interests and my values.
And my husband will talk about this, it felt like I was like trying to find something to orbit in those years. Like, I remember, I got really into sewing, and I got really into like, kombucha making, and all the DIY stuff, but none of it, like, felt robust enough. And then the shame of like, why am I not content as a stay-at-home parent? Yeah, yeah.
KILEY HANISH: Yes, I agree. And looking at other people, well, number one, like I couldn't leave the house very often because I was like, obsessed with nap schedules. And it just overwhelmed me and all that. But then all the other people were like, "Oh, I'm taking my baby everywhere." And all that.
And then being a bereaved parent on top of that, you can't go into normal spaces with parents and children because you're like, "I have just been through, like, a trauma and you don't understand and so it's way different." Yeah, I mean, I feel like there's a whole nother parenting episode here.
DR. MEGAN NEFF: Yeah, there's a lot.
KILEY HANISH: There's a lot. Yeah, I mean, yeah.
DR. MEGAN NEFF: Yeah. Did you find community like…
KILEY HANISH: No, I didn't. I was very isolated. It was super isolating. It was hard. And I also feel like my interests are not… yeah, I cannot be a stay-at-home mom. Like, I am a disaster. And, I mean, I'm good at all the things and all that, but it's just like, there isn't enough, like, intellectual meaning and purpose.
DR. MEGAN NEFF: Yes, I literally had, like, I feel like my brain is atrophying.
KILEY HANISH: Yeah.
DR. MEGAN NEFF: Yeah, yeah.
KILEY HANISH: And then not being able to connect to other parents, even like as kids go through school. Like, I'm so intense and I'm like wanting to talk about like, things that I care about, and being able to talk to men more than women because men talk about things rather just women it's just small talk.
DR. MEGAN NEFF: Yep.
KILEY HANISH: So, it's interesting.
DR. MEGAN NEFF: Yeah, I think mom culture has been the hardest place for me to integrate. And I didn't understand it for so long, that that brought on a lot of shame. But yeah, I have like a visceral response to mom culture. I actually hosted last year an autistic moms group. And it was the first time that I felt connected in a group with other moms.
KILEY HANISH: Yeah, well, there's this woman [PH 00:30:37] Moinia Taslon who wrote an article, a qualitative study of sensory experiences of autistic mothers, which I recently read, and was like, "Oh, this explains everything." And then with my students, we kind of took that and one other article, and did a survey with autistic mothers to just understand their experiences, and right? Like, they're all diagnosed post-children. And just all the things that are hard for them, that are different than, I mean, parenting in itself is really hard anyways, but you add the autistic piece, and the sensory challenges, and all that. It's fascinating, so…
DR. MEGAN NEFF: I would love to see your research from that.
KILEY HANISH: Yeah.
DR. MEGAN NEFF: Yeah, I think, you know, I've shared this before, maybe it's changed by now. But if you Google like, you know, autism and pregnancy or anything related, yeah, to kind of birthing, you'll find a lot of it like how to avoid having autistic children, but the experience of the person birthing who's autistic, like, we're only now beginning to get curious about that experience. And yeah-
KILEY HANISH: Yeah. And, like-
DR. MEGAN NEFF: Go ahead.
KILEY HANISH: So, I was going to say, like, there's like the pregnancy itself, so the interaction with medical providers, the sensory pieces in the hospital, all that. And then there's the after… It's fascinating.
But I even remember, like with my last child, so I have two living children now, but I went in, and it was like a very quick, like, one hour, I got to the hospital, and he was born. But like, I hired a doula for that one because I wanted to, like, reclaim my birth experience. And she and my husband were talking the whole time. And I was like, "Just shut up." Because like, when I was there, like, I don't know, for me, I mean, labor for everyone's different, but I was very much in a meditative state. And I just like, "Why are you talking…"
And then I heard the nurses like, "Oh, well, we need to do this." And like all these questions, I was like, "I'm in labor. Like, just nobody talk to me right now." And even, like, the doula did not understand pregnancy after loss. And was like telling me at eight months, "Well, you should really talk to your baby. You know, you're having a baby." And I was like, "You have no idea."
So, I mean, that's the other thing is just like, my nonprofit, which I don't think we said the name of is Return to Zero Hope. And my husband made a film about our experience called Return to Zero Hope that like, is a feature film, has mini driver in it.
DR. MEGAN NEFF: Oh, wow.
KILEY HANISH: But then she did an incredible job. So, it's like, emotionally, our story, but with the nonprofit we have all of these free webinars on there, some for health care providers, some for parents, right? Just like educating and empowering people, which I think is so important. And so, that's just my little shout-out there.
DR. MEGAN NEFF: Well, please talk about your resources. I mean, these are the resources and I love this. Like, you built what you would have wanted and needed. Actually, I feel like I see that a lot with autistic people. Like, when we have an experience it's like, okay, how can I build the thing I didn't get? And I love that you've done that. So, yeah, please [CROSSTALK 00:34:11] for like pregnant and birthing people?
KILEY HANISH: I mean, so first of all, I'll just say to, like, normalize this, the film didn't come out until nine years after our loss, a long time. And the first, like women's healing retreat I held, which is the first thing I did was nine years after the loss. So, it was a long time. And so I tell people, like, you know, I think people want to do something. Like, there's sometimes there's that urge. And for me, it took a lot of time until I feel it's a very spiritual journey for me. Like, I heard a voice in the shower that said, "You should do a retreat." I'd never been to a retreat, I never hosted, I didn't know anything.
But it came from this email I received about there was a lack of resources and a lack of connection of other grief parents. And I hadn't had any support. It was like this isolated me and my husband for nine years. We understood, but no one wanted to bring it up to us because they thought that it would bother us. And I mean, well, that's a whole nother thing.
So, with that, I just started doing that. And that's been an evolution and now has evolved. We do in-person retreats, we're doing a provider retreat in 2024, which I'm so excited about because I mean, first of all providers after COVID it's so hard, but also providers working in perinatal health, perinatal mental health it's hard, and there's nowhere for them to go so…
DR. MEGAN NEFF: Yeah, it's one of the highest burnout professions among physicians is OB-GYN, which, like I think makes so much sense. People often think about, like, working in OB-GYN is like, oh, it's all happy. But no, I mean, it can also be traumatizing for providers in a different way. But I love that you're thinking also through [INDISCERNIBLE 00:36:35] plans and community among providers.
KILEY HANISH: Yeah. And then with the pandemic, I think there's been a lot of gifts with being able to do virtual support groups, reaching people who are anywhere in the world, really, because a lot of people even if there was a in-person group before the pandemic, a lot of people don't live in places where they can attend. And so we do a really unique structure.
And I think everything, my partner, Betsy, in the nonprofit, like we have really pulled our life experiences and sort of unknowingly created resources that are neurodivergent affirming, and trauma-sensitive, and resilience-focused. And I think that what we offer is really unique. And so like with our support groups, they're six weeks closed support groups, so it's the same people. So, you can build community, but there's trying to create safety as much as possible. We have a curriculum that we follow, we walk people through things that you don't even know that you need to know about grieving and navigating life after loss. And then the group itself is very structured.
And like, we did this because I would never go to a support… I went once, like, right when the movie was coming out. And I was like, "Maybe I should go and process." And I went to this group, it was in a hospital, which, first, hospitals freaking scare me. Secondly, it was in the cafeteria, so it was like uncomfortable. And it was zero structure. And it was like people just telling their traumatizing stories. And I left. And I was just, like, at a certain point, and I also, like, get tired early in the night, like, because my brains been on all day. And I just got up and left at a certain point. Like, I'm not sitting through this.
But being like in our groups, it's like very structured. Like, we have a topic, we have a psycho-education piece, we have a discussion question, people answer one by one, so there's no like crosstalk. Then there's like weaving it in, and then there's self-reflection, but it's very tightly structured.
DR. MEGAN NEFF: I love that, I love that.
KILEY HANISH: So, like, and I love it, too. I would never do any like… and I tell people even at the retreat, I was like, "I would never go to a retreat, but don't worry, like we got you here." Like, it's all super tightly held and I feel like really holding space is what we are doing. And so there's all sorts of different support groups. You know, we started out with pregnancy and infant loss and now there's early pregnancy loss, recurrent loss and infertility, termination for medical reasons, people of color. We do like an LGBTQ drop-in group, pregnancy after loss, parenting after loss. So, there's like-
DR. MEGAN NEFF: Oh, my goodness, you do so much. And because these are all such different experiences I love how it attuned you all are.
KILEY HANISH: Yeah, well, like, for example, before I would say people who had a TFMR termination for medical reason, that they could just come to the pregnancy and infant loss. So, I was like, "Yeah, of course, you're welcome, you lost your baby."
And some would come. But like, no, they have a very unique experience and that group sells out all the time. And we're the only, like, pregnancy and infant loss organization who sees that as a loss. I think there's a lot of groups out there who feel like it's abortion, and they're not going to be supportive of that. And I'm like, "But these people… you don't understand. Yes, they made a choice, but you know, it's for their health, sometimes, or their baby is going to die, or live a very disabled life." And you don't even know, you cannot get the information that you need. I mean, that's… So, it is a very specific space that needs their own space.
DR. MEGAN NEFF: Absolutely, absolutely, yeah.
KILEY HANISH: Okay, what other things do we… We offer, just the website itself is a wealth of education information. We have downloadable PDFs, that is all free, we have beautiful printed brochures for provider offices. Like, for example, partners grieve too, grandparents, siblings, loss of multiples, like early pregnancy loss, and even wanted, like, all these different things, so there's so many different topics.
And then the webinars I mentioned, so like we have a YouTube channel with different playlists, which is amazing. And then providers, we offer monthly provider consultation groups. One is for, like, more of the hospital medical providers, one is more for mental health providers. And I don't know, I mean, that's kind of the main. We have a pregnancy and infant loss directory, also, I forgot about that. So, like, that has-
DR. MEGAN NEFF: Really helpful.
KILEY HANISH: Local and virtual resources, depending on whether you need, like, counseling therapy, or like a support organization, psychiatry. Like, I'm really tied into Postpartum Support International, which offers like the perinatal mental health certification. So, reproductive psychiatrists.
DR. MEGAN NEFF: Yeah, I like that. You have [CROSSTALK 00:42:44]-
KILEY HANISH: So, like, I send everyone. I'm like, "You need to see a reproductive psychiatrist, regular psychiatrist do not know about, like, they give you the wrong information." And I'd be like, I had someone working for me who became pregnant, and they were on an antidepressant, and the psychiatrist says, "No, get off of it." And I said,
even the OB, and I was like, she was not able to get out of it. I was like, "Oh, no, we need to get you to someone who knows what they're doing."
DR. MEGAN NEFF: Oh, yeah, that's scary.
KILEY HANISH: [CROSSTALK 00:43:17]-
DR. MEGAN NEFF: Yeah, and I think you've built neurodivergent, like, accessible resources without even realizing that's what you're doing just by being you and by caring. Like, you built this, and like, because right, only in the last year you discovered you're-
KILEY HANISH: Well, I did like a self-diagnosis in December, which was like, nine-ish months ago, and then a formal diagnosis because I wanted to see what was going on with like trauma, like [CROSSTALK 00:43:46]-
DR. MEGAN NEFF: Yeah.
KILEY HANISH: …because there was a significant amount of trauma from all of this, stillbirth and stuff like that. But I got a formal diagnosis of, you know, autism, ADHD, plus some other mood disorder stuff, but I knew it all. So, now, I'm like, very much an advocate of self-diagnosis. I was like, "You know what, this didn't really do anything." I mean, it validates me and there's not something else hidden in there, but I was like, "Whatever." I'm like…
DR. MEGAN NEFF: I love that because I think sometimes it can be put on this pedestal like medical diagnosis all of a sudden huge things will change. But I love they're like, "You know."
KILEY HANISH: Well, and then it's like, they're like, "Oh, here's your diagnosis. Okay, good luck." Nothing, nothing. And I was like, if I was that person, obviously, they're not neurodivergent, if I was the person doing the assessment, I would be like, "Hey, here's the whole website I built, here's the all the blog." Blah, blah, blah, blah, you know? Kind of like what you did. That would be something that I would do, but they just like, "Okay, here you go." So, I don't know.
DR. MEGAN NEFF: Which was your experience around pregnancy loss.
KILEY HANISH: Yeah.
DR. MEGAN NEFF: Yeah.
KILEY HANISH: And so I also feel like, I cannot take this on right now, but the gap in, like autistic adults, like giving information, and just like, but how many people I talk to now who share, I mean, they share the same, "Oh, my kid has autism." And then I self-disclose. And then they're like, "I think I might, too." And then I'd like, "Here's my Google Drive with a bunch of stuff." Which is totally informal. But I'm like, "There's so much stuff I put together go read it."
DR. MEGAN NEFF: I love that. You're so good at like systematizing and building systems, and I love that.
KILEY HANISH: It's like a superpower that I didn't even know that I had, but it's so, I mean, I think going back to kind of that initial experience of coming to know so many of us who by getting access to information, and that psych-ed piece, I mean, that's something you are so good at is building like, here's the things that are helpful for you to know about your experience, about your body, about what to expect.
DR. MEGAN NEFF: Yeah, yeah. I'm cognizant of time and I think the part on our agenda we maybe didn't hit was around the grieving process. And I know that you mentioned like, I think there were some collective rituals or practices that you felt were helpful or that were distinct as an autistic person. Do you want to share a little bit about the grieving process?
KILEY HANISH: Well, okay, I think actually, for me, up until I started doing the retreats there was not a lot, you know? There was, basically, like, I didn't have any guidance. I mean, I don't know. And at that point, the Internet was, like, not really a thing. It was so long ago.
And so I feel like my connection was very private and I connected, or my son appeared to me as a white butterfly. Like, I feel like the deceased of any kind can send us messages through animals, insects, things like that, or signs, different, you know. There's a great couple of books out there by a medium named Laura Lynn Jackson, The Light Between Us and Signs, and I just love it, just, basically, the veil between this world and the other world is very thin.
And I think I've had a lot of like psychic abilities in terms of like being able to, like, because I'll hear… Everything with Return to Zero has been inspired by other. I'm a very, very left-brain person. So, this is not how I operate. However, it is very much nothing I ever would have thought I would do is like, I was being chosen to do this. And I know that sounds woo woo, but it's just the way it is.
DR. MEGAN NEFF: I actually love it because I'm so similar to you. I'm so science-based, except when it comes to, like, collective energy, spirituality, and like I sometimes say I feel like a lot of autistic people would have been Shamans in a past life, like, in historic times, of like, I've definitely had moments of knowing when something is about to happen, or like, these spiritual experiences. I'm like, this does not fit within my scientific frame, but yes. So, I actually love that. And I know it sounds really woo woo too, so I often don't talk about it. And these are very real experiences I've had and I know a lot of autistic people have.
KILEY HANISH: Yeah, and so I think, you know, I didn't really do a lot. It was through the retreats, through other people who were even more connected to the spirit, I would say, that the importance of bringing in ritual and collective ritual. And I think the biggest things we do are, we like light a candle, like, we have like a group circle, and we have like this, I'll say altar, but it's not just on the floor. And we have candles with every baby's name tied around the candle, and we light it every morning when we sit down, and we [CROSSTALK 00:49:36] candle, they say their baby's name.
So, I like I'd say, "Norbert." And everyone else would say, "Norbert." And just like you don't ever get, if you named your baby, not all people do, but you don't ever get to hear their names spoken. And so it is really powerful. So, like that's something that we do as a group.
We also allow people… we set up like a memorial table that people can bring things or pictures, whatever because that's also something that people don't always put out in their home, or they put it out, but it's in this, like, a more private space.
I don't do a lot and I sometimes feel bad about it, right? But I know that that's just me. You know, I think like, green-
DR. MEGAN NEFF: [CROSSTALK 00:50:29] oh, sorry.
KILEY HANISH: No, like, right, there are societal expectations-
DR. MEGAN NEFF: Yes, yes.
KILEY HANISH: …of grief and also gender expectations.
DR. MEGAN NEFF: Yes, yes. And especially, I think, for autistic women, those conflate because, especially, if we have alexithymia. Like, I definitely experienced that through my grief, specifically, around my pregnancy loss is I'm not doing this right, there's a right way to grieve this and I'm not doing it right.
KILEY HANISH: Yeah, like, I never cry. Like, I mean, occasionally, but it is rare. And so like, after my loss, I didn't cry. My husband was way more emotional than I was. And I was just like, super stoic, and I go to these retreats. And the last retreat, I actually knew I was autistic. And so I said to everyone, I was really excited. I was like, "Hey, just to let you know, I'm autistic and I don't show a lot of emotion. So, it might look like I'm really stoic, but I do have a ton of emotion inside of me, it just doesn't show. And when I'm there, also, it takes a tremendous amount of concentration and energy to hold space."
And like when Patrick talks about his retreats, I'm like, preaching to the choir. Like, I do this. Now I know when I have to go like, take a little sensory cocoon nap in the middle of like, in the afternoon, but the draining, like I am drained at least a week after. Like, I cannot schedule anything and then you're like, at what cost? But it is such a powerful experience. And it is such an honor to be with these women. It's so powerful. You can't even put words to it. And it drains the life out of me. So, it's very interesting, but it-
DR. MEGAN NEFF: Yeah, yeah. Well, and there's some interesting research that, like, we are more impacted by kind of the affect of people around us. We don't always know how to identify it, which actually makes it kind of more of a sensory load, but that we pick up energy tone a lot of us very sensitively. And again, that disconnect of like, maybe looking really flat, but being so deeply impacted by the emotional tone, I would think, especially, in grief spaces that's a complex autistic experience.
KILEY HANISH: Yeah, I mean, I am hyper-empathic and hypersensitive to other people's energy. And that's also, like, I know, auditory is one of my big sensitivity areas, but energy, like literally, someone walks in the room, I can sense what's going on, even if I drive outside, and there's like, we had, like, a hurricane warning here a few weeks ago. And like, I wouldn't be here to put it together. But I went to the grocery store, and everyone was like, and I was like, "What the heck is going on?" Like, just superpowers, but it's hard to say what it is.
DR. MEGAN NEFF: Yeah, yeah, absolutely.
KILEY HANISH: Yeah, okay, more about grieving. Like, I mean, I think that one big one is like not grieving as other people think you should be grieving.
DR. MEGAN NEFF: I think that's a great global. Like, whether it's a death of a loved one, whether it is an identity shift. I think that's a really global, like, autistic experience of the way we grieve, especially, what people observe from the outside doesn't always match kind of the cultural expectations.
KILEY HANISH: Yeah. And then I think there's also the false belief in, like, old grief culture, that like, oh, like, you get over your grief, you move on from your grief. And I feel like for me, and I think this is similar, like people are really great for about three weeks after something bad happens. And then they all continue to go on their life and your life it's like there's a before and an after, your life will never be the same. And you're just, like, standing there in shock, and you're like, "What the heck?" You're like, "My life, I can't go on."
And so, it's this long, long process of integration and processing, and other people, like, "You look better or you seem better?" You know, things like that. And maybe even not to me, I don't know. But I hear this all the time. And you're like, well, this is complicated. And this just doesn't happen over a week or a month, like grieving is a lifetime, and it changes. And like, it's not linear at all. There's no stages. And it's like, back and forth, and up and down. And you and your partner are grieving on different timelines, and different, like phases. And it's messy.
DR. MEGAN NEFF: It's so messy, it's so messy, especially, with yeah, the kind of co-grief, if someone has partnered, and then the timelines don't always, like, sync up. And that can create confusion and kind of disconnect. Yeah, yeah. I love how you were talking about grief of, I'll often talk about like, yeah, learning how to carry the grief well, but I love your language of integration. And that, yeah, this myth that it's like something we get over, and then move on from versus like, it becomes part of us and we live with that in an integrated way. That's like, yeah…
KILEY HANISH: And I think for, like, anyone that dies, so in my case of my stillbirth, like, I still celebrate my son's birthday, he would have been 18 this past July, but people do that, that will be forever. But even with loved ones who die who are not babies, like you're going to remember their birthday. You might remember their death day. Like, those are days to like, whether you do something or not, it is a touch point, I think. But other people around you don't see that necessarily.
DR. MEGAN NEFF: Yeah, yeah. They forget the touchpoints. And yeah, yeah, yeah.
KILEY HANISH: You were going to say something but you probably forgot.
DR. MEGAN NEFF: Well, it's like, it was in response to something you said like two comments ago. So, [CROSSTALK 00:57:44] connect now. I was just going to share I appreciate the wave metaphor of grief. That was, I was 18 when I first had my significant loss. My best friend in high school died of a brain tumor. And learning, like, I remember the first week or two it was just constant. And then I remember the very first time I forgot that David had died I was in a movie theater. And maybe I forgot for five minutes. And then it hit me like a wave. And that idea of, at first, like the wave, that it's like a tidal wave, it's constant. And then there might be some spacing out of the waves, but like, it can catch you off guard. Like, maybe it's been a stretch since there's been a wave, but there'll be some remembrance. And a wave can just kind of be like a sneaker wave and catch you off guard.
But that imagery of waves was really helpful in my initial grief of, like, just understanding that this is a process. It ebbs and it flows, and there's some really heavy grief days and there's, like, lower impact days.
KILEY HANISH: And I think, also, like one thing I experienced myself, but also hear a lot is, you know, you will over time have moments of respite from that intense grief. And hopefully, those moments get more often and longer. But there is this connection… like there is an attachment with you to your loss or your baby through the pain. And so you start feeling guilty if you don't feel the pain or you begin to feel moments of joy. And so teaching people that okay, we don't only have to connect through pain, we can also connect through joy or through other ways. Like, there's lots of ways to connect and so, you can let go of the pain and still remain connected. So, I thought that was like something else that I learned.
DR. MEGAN NEFF: I love that because you're absolutely right, that can lead to complex grief. In the DSM, there's a diagnosis of complex grief, especially, when people kind of get stalled in the grief process. And I think it's part of that, of I don't want to release my pain because this is my attachment to that person. But I love your expansion of it, of there's so many ways that we can continue that attachment beyond pain.
KILEY HANISH: Yeah. And so, like the term or a term or is continuing bonds. You can go out there and Google that. And the idea that, yes, there is a physical relationship that is not there, but there's other relationships that can continue. So, it's interesting.
DR. MEGAN NEFF: I'm going to put a plug, I don't know what you think of this theory. But since you said continuing bonds, I'm going to put a plug out for Wordens for tasks of grieving, and much appreciate that to the stages of grieving. They're, like, active steps that a person takes in the process of grieving and they're nonlinear. So, there's four tasks, and the thought is like, you will be in one of these tasks, like, and you'll go back and forth. And it's a process, but one of them has to do with the continuing bonds. And I'll put a link in there, but that's another great... if someone is experiencing, especially, the loss of a loved one, I think Worden's tasks of grieving can provide a framework, which again, is helpful for autistic people to learn how to integrate that loss and live with it.
KILEY HANISH: Well, I'll look it up.
DR. MEGAN NEFF: Yeah, yeah. I'll send you a link.
KILEY HANISH: I know we're sort of running short of time, I just have one other thing that I didn't really think about before that I think is important. So, right, as autistic people our friend circle can be small, very, very small.
DR. MEGAN NEFF: Yes.
KILEY HANISH: And so I know that, like, we talk about, like in our relationships module, like with your partner, that your partner is also grieving, and you can't be the only support for each other. However, when you're autistic and you don't have a lot of other people to talk to that's really hard. And like, for years, the amount of therapists I tried to find that didn't understand my experience at all, you know, and so being really lonely.
And it wasn't until I met other people who had been through this, that I was like, "Oh my gosh. Like, you get what I've been through." And it's the same as being autistic, but just like being with other people who've been through this type of loss and not having to explain yourself. Like, those are my closest relationships now, but it's lonely.
DR. MEGAN NEFF: Yeah, yeah. I think after this episode record if you start an autistic pregnancy loss group, I think that would fill up really fast.
KILEY HANISH: But the question is, do people know they're autistic?
DR. MEGAN NEFF: Oh, probably not. Like, I definitely didn't when I was going through it. And I would imagine a lot of people even five, 10 years later, would still benefit actually, from-
KILEY HANISH: Yeah.
DR. MEGAN NEFF: Because I do think that we perhaps are more prone to getting stalled in our grief process because of alexithymia, because of interoception, because of lack of community. So, I actually think people who have now since discovered they're autistic, even if this was 10 or 12 years ago, like would still benefit.
KILEY HANISH: Interesting, yeah.
DR. MEGAN NEFF: That's my hypothesis.
KILEY HANISH: I don't know. I think like, if you suspect you're autistic, if you have a autistic child, or you're highly sensitive.
DR. MEGAN NEFF: Because I think if you're highly sensitive person.
KILEY HANISH: Because I'm attached to the highly sensitive person thing about like, five years ago, like that was my language.
DR. MEGAN NEFF: Yeah, like, that's the pathway for a lot of, especially, women, I notice, yeah.
KILEY HANISH: Yeah, so, okay. That's all. I mean, we could keep on talking forever, but there's a lot of things in here.
DR. MEGAN NEFF: There are so many interweaving themes, which is kind of what we do here. We try to create space for how complex these topics are. And I think we definitely did that today. There's a lot of interweaving pieces here between identity, autism, loss, grief, advocating the medical systems. There's a lot here, yeah, yeah.
Thank you so much for the generosity of your time. Like, I know you're wildly busy, but also just the generosity of sharing of yourself, and your experience, and of the community that you've built.
It's interesting, this episode might be listened to less, because people will see the title and be like, "I don't relate to that." But I think the people that listen to this will be so deeply impacted because of what you said, of, there are so few spaces for autistic people to talk about this. And our worlds tend to be small. So, I think the impact of this episode for those who relate to this subject, I think, will be really incredible. So, thank you.
KILEY HANISH: Thank you. Thank you for having me on. Like, I feel like I've been devouring your podcast. I've been like, I haven't done this so deep dive into your website because there's so much but just like I joined your membership just because I want to learn about myself. And it's just so amazing to find language, to feel validated. And that you both are so vulnerable and that it's hard to do that, I think. But like, what is most personal and intimate is really most universal and people identify. And I know that they're grateful. So, thank you.
PATRICK CASALE: Thank you so much for coming on. Okay, well, awkward goodbye time. So, new episodes are out every single Friday on all major platforms and we will see you next week.
