Interview between Speaker 1 (Meg) and Speaker 2 (Moyna Talcer)
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Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in occupational therapy practice. I’m Meg Proctor from learnplaythrive.com.
Meg: Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘autistic person,’ rather than, ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 33 with Moyna Talcer. Moyna is an autistic occupational therapist and researcher with over 20 years of clinical experience in the field. She runs a private practice in the United Kingdom focused around supporting neurodivergent people across the lifespan. Moyna has completed postgraduate training in sensory integration, and she teaches and mentors on this approach. So, in the summer of 2021, this year that we’re recording, Moyna published a qualitative study on the sensory experiences of autistic mothers. She reached out to me with the study the very same week that I had planned to interview Sarah Selvaggi-Hernandez on this same topic, the sensory experiences of autistic mothers. So, we shifted things around and got right on Moyna’s interview.
Today, we’ll talk about Moyna’s study from her inclusive methodology to her results and how they should impact the way we work, whether we work with adults or children. One of the big takeaways from this talk is that self-discovery and self-advocacy start as early as possible. And Moyna and I talk about how we can bring that message into our clinical practices. And if you love this topic, be sure to tune in next week when we go even deeper into sensory processing, self-advocacy, and motherhood with Sarah Selvaggi-Hernandez. But first, here’s the interview with Moyna.
Hi, Moyna! Welcome to the podcast.
Moyna: Hi, thank you so much for having me.
Meg: It is such a pleasure. So, you first reached out to me with a link to your research article titled ‘A Qualitative Exploration into the Sensory Experiences of Autistic Mothers’, and I was so excited to get that message from you on Facebook, actually. And I knew immediately that we needed to connect over this more. So, I want to dive into what your study was, and why you did it, and how it connects with you personally as well. Can you tell me a little bit just as we dive in about why you chose this topic?
Moyna: Yeah. I think at the moment, as you’re probably aware, there’s so much research out there in the field of pediatrics in relation to autism. And when you look at the adult population, it kind of thins out quite a lot. And there’s almost nothing on parents who are autistic. And there’s — well, there’s in fact only two studies, really, that related to the sensory experience of autistic mothers, and they didn’t really specifically focus on that topic. So, for my research, I was exploring the sensory experiences of autistic mothers, and to my knowledge at the time — well, even now, it’s the only paper that’s ever been written specifically on this topic. And I was first inspired to complete the research after doing my MSc. part-time in sensory integration at the university.
And I myself, like many other women, had just been diagnosed late as autistic. And this was following the birth of my son. And I think, for me, having a lack of downtime and a lack of opportunity to withdraw and have some time to myself, it meant that I felt completely overwhelmed a lot of the time. And this led me on to questioning whether I needed to go for a diagnosis of autism. And obviously, that’s how it turned out. I’ve always had sensory processing differences ever since I was a child. I think I was able to manage them up until a point. But then, when I had no downtime and no time to myself, that’s when it became really problematic.
So, this really was the inspiration for my research. Because as a clinician, I was looking for evidence-based practice, I was looking at ideas as to why somebody who is autistic as a mother might struggle with the sensory side of things. And as I did a literature search, I found almost nothing on that topic. And I think at that point, it really hit me. Wow, this is really what I need to start my research on, and this is really what motivated me to do it. So, there was nothing out there that was relatable. And I turned to the online communities of other mothers who are autistic, and really just sort of asked them and said, if you’ve got any information, do you know where you found anything? And there was nothing. But there was a real need for that literature and that resource. So, that was the big motivation for me to do that research.
Meg: You know, that really resonates. I think all of us who have gone through pregnancy, and childbirth, and early motherhood, or even early motherhood through adoption, know the experience of seeking out community and connection, and finding out if others share your experience. Because it’s so isolating, and it’s so challenging. And I hear you saying, yeah, I was going through this, and my experience felt different from others, and I needed to figure out where to put it.
Moyna: Absolutely. And I think, as a clinician who works with people throughout the lifespan who are autistic, you know, I’ve got a lot of clinical experience of, you know, sensory processing, sensory differences. And even with that knowledge, I was still feeling really overwhelmed and like I needed to have something to lay my understanding down in a bit of a clearer way, really. So, yeah, that was what motivated me to go ahead and do this research. It was kind of a calling, I guess you could say. [Laughs]
Meg: Absolutely. We’ve had so many late diagnosed women on the podcast who talk about how finding out they’re autistic helped them understand and accept themselves. I just — I hear that thread coming in over, and over, and over again.
Moyna: And it’s supported in the research as well, you know, having a diagnosis, it gives you a better understanding, it improves your self-concept, your self-identity, and it can improve the long-term trajectories of your life. So, I feel it’s a really important step and one that as a society, we’re not quite good enough at early identifying people as autistic. I think it’s something that we really need to focus more on.
Meg: Absolutely, yeah. Okay, so, before we talk about your study findings, I want to talk about your methodology. I was talking to autistic OT, Sarah Selvaggi-Hernandez, who I’ll interview in the next episode on the same topic about her experience and how your research landed with her because she’s also an autistic mother. But I was talking to her about your research study and about research in general, and she told me how triggering and painful most research can be for her to read. So much of it is used to justify the othering and, frankly, the abuse of autistic people. So, she looked at your article, and she said, first, she sort of cautiously scanned it, then she realized it was safe, and then she read it again. And she said it was so healing just to read your research, because you were elevating the voices and experiences of autistic mothers. And I thought that was so lovely. So, I want to learn more about how you set your study up. How did you set it up in a way that would give rise to this safety and empowerment?
Moyna: Well, firstly, I just think that’s amazing for somebody to feel that way reading the research. And I think, as somebody who is autistic, I felt that I had to be really careful about the way I approached the research to make sure it’s authentic as possible, and that I gave the participants every opportunity to share their experiences as safely as possible, like you said. I chose a qualitative methodology because it’s well suited to the question and it enabled me to really explore their experiences from their own voices, and I found that to be a really important part of the study. Prior to even running the study, I spoke to a lot of autistic mothers beforehand and I ran through with them my questions, I ran through with my thoughts, just to make sure that my experience wasn’t in isolation, that it was a shared experience, and that the questions I was asking weren’t ambiguous, they were appropriate, the language that they used was safe and easy to understand.
I also developed some protocols to use throughout the study. So, the first one was a distress policy. So, when I was talking to the participants, obviously, some of these discussions I was having with them, it may have brought up emotional experiences for them. And I wanted to make sure that they felt safe throughout the study when I was talking to them and having those interviews. And so, that distress policy was really helpful to guide me and to monitor their reactions when I spoke to them, and just to ensure that they were feeling okay. And I also had a vulnerability and unexpected circumstances protocol as well to put in place should something happen or be disclosed during the interviews where I could make sure I could signpost them to the correct place. And following the interviews as well, I had a debriefing policy where I sent them relevant information or resources that might be helpful to them following the study if they had any emotions or things that came up after the study, to make sure that they had somewhere to go to discuss those challenges.
Meg: That’s so lovely and thoughtful. Is that sort of protocol standard in qualitative research or emerging? Or did you come up with it yourself?
Moyna: I think when you’re talking to people about difficult situations, and I think, you know, I didn’t know if all the mothers that I spoke to would have had a difficult birth, a difficult experience going through motherhood. But I imagine that there may have been difficulties there that could have brought up some emotional situations. And I think my supervisors and myself, we were really clear that we wanted to make sure that they felt safe talking about those things. So, if you’re going through ethics, you need to make sure that you’re thinking about all the options that could come up where somebody might display as distressed, or they may be upset, and you need to make sure that you’re looking after the people who are coming forward and sharing their true experiences. So, yeah, I think it’s something that’s required. I know it’s something that’s required for rigorous research.
Meg: Yeah, I want to highlight one other thing that you said before you walk me through the rest of the ways that you set up your study. You said that you wanted to set it up in a way that would promote authenticity. And I also hear authenticity coming up as a theme for what we should be aiming for in our work. I wonder how research would look different if the criteria weren’t compliance in our quantitative studies on therapy interventions, or our criteria weren’t less autistic qualities, for criteria were authenticity; self-rated, authentic expression of self. It seems like, that’s so key to shifting how we look at what’s our goal with evidence based practice? Is it compliance or is it authenticity?
Moyna: I would say it’s authenticity, of course.
Meg: Of course. Yeah, me too. I wish that were always the case. Okay, so, tell me more about your methodology.
Moyna: I think one of the things I felt was really important, and I did some research around how to set people up for interviews, and what would be really helpful for people who are autistic. And one of the things that was coming through the research and certainly my own experience is it’s really nice to be prepared. It’s really nice to know what you’re going to talk about, it’s really nice to know what’s expected you in the interview, and what that interview might look like, you know, how it might be scheduled, how it might be kind of run through. So, I ensured that before all of the participants engaged in the research with me that they were sent all of the questions beforehand. Well beforehand, at least two weeks before their interview where I could. So, they had lots of time to process the questions, to think about their answers, and they could ask me questions if they wanted beforehand. And I felt that this was a really good way to set them up for success so that there was nothing that was a surprise. They knew the routine that we would run through. It was very formulaic, so that I think that gave them a sense of safety within that. There wasn’t a shock, and they could process their thoughts and get their true feelings out, I guess. And I think I got the best of them, you know, through doing that.
Meg: That’s wonderful. All right. Let’s dive into your study. Tell us a little bit about what you did and what your key findings were.
Moyna: Okay, so I had a qualitative study. I interviewed seven mothers that were eligible for the study. I use semi-structured interviews that were all conducted via telephone, and the data was gathered between May 2019 until June 2019. It’s quite a while ago now. The information from the studies, from the interviews, they were transcribed immediately and then I went through the data analysts — analysis process. Five major themes were identified from the data and 17 sub themes. So, the five major themes were antenatal experiences, the sensory experiences of motherhood, the impact of sensory experiences upon motherhood, the strategies and needs that we use — so, those are the used strategies that were currently being employed, and then the needs, things that were missing, really, for those mothers — and then there was a big theme of diagnosis. So, the fact that nearly all of the participants were diagnosed late, and the impact of diagnosis is really important. So, those are the main themes.
Meg: Okay, this is interesting. I want to talk through those with you one by one. The first one you said was antenatal.
Moyna: And so, yeah.
Meg: Before birth. What did you find in that category?
Moyna: What was really interesting out of my small sample, out the seven mothers, six of them experienced significant sickness. So, lasting longer than five months after becoming pregnant. And that’s a significant number. It’s much more than the typical population. And of those mothers, a lot of them reported that the sickness was brought on due to specific sensory reasons, such as visual disturbances. Smell, obviously, is a big one. And movement as well, which was atypical from neurotypical populations. And also, all of the mothers were undiagnosed as autistic at the time of their birth. And when they were going through their labor and their pregnancy, they didn’t realize they were autistic. So, they had all these sensory experiences, they didn’t have a name for that, they just felt that they were strange and different, and they felt quite separated from their peers in their pregnancy experience, which, obviously, is quite difficult. And all of them struggled with the sensation of touch throughout their pregnancy. Because obviously, you know, when you’re pregnant, you have lots of medical appointments, you’re touch constantly, people feel your bump, and anyone can touch that zone, which is obviously really difficult if you’re sensitive to touch. So, those are the main differences in the antenatal theme.
Meg: We’ve had a few episodes on self-advocacy. And the process that Dr. Stephen Shore talked about was, first, you have to know that you’re autistic, know what that means, and know what that means for you. Then, you have to know what contexts are hard for you, and what supports help you. And you have to know how to ask for them. And all of these mothers were missing that very first piece to even potentially work their way down of knowing what they needed and why.
Moyna: And some of the mothers were, when they were sharing their experiences, they were sharing that they were in these really high stress situations. You know, labor isn’t, for most, it isn’t a pleasant experience. It’s quite stressful, it’s quite painful, it’s very painful. And a lot of them felt that they weren’t able to self-advocate in those situations. And as a result of that, they weren’t able to get the care that they needed. And one of the mothers that spoke to me said that she didn’t get adequate pain relief, because her face didn’t register pain. So she had stitches without pain relief. And she said she was in the most excruciating pain, but she became mute because she was so overwhelmed, and she couldn’t express that. And I think it’s so sad that people have to go through these experiences. And I truly believe if they were aware that they were autistic, and they’d had training and understanding about what sensory processing differences can mean for somebody who’s autistic, and how to advocate for themselves, I really feel that their experiences hopefully would have been different as a result of that knowledge.
Moyna: It’s a big missing piece,
Meg: I can imagine you could put that in a birth plan.
Meg: “I’m autistic. My face doesn’t look like I’m experiencing strong emotions when I’m in pain. Please believe me if I tell you I’m in pain, or if my partner tells you I’m in pain.”
Moyna: Yeah. Yeah, it’s shocking. It’s shocking. And another mother, she ripped her stitches off. She had her baby, because her sense of self within space was so altered that she couldn’t perceive her body — that shape within space — so she moved up the bed too quickly, she ripped her stitches. And that could have led her to have, you know, higher incidence of infection and everything else. I think, you know, in those early stages to have had the knowledge that they were autistic with associated sensory processing differences, that would have been such a helpful part in their process.
Meg: Yeah, I imagine there’s a lot of mothers listening having big feelings now, because those of us who have very typical and usually not very challenging experiences of being in our bodies in our sensory world, are pushed to and sometimes beyond our absolute limits in pregnancy, childbirth, and early motherhood. And it’s sort of painful to imagine if you’re already closer to your limit in day to day life being neurodivergent in a world set up for neurotypicals, I can’t even imagine without the proper supports.
Moyna: It’s really good way to put it.
Meg: Yeah. So, the next category that you said was the sensory experiences in motherhood. Tell me what you found with that.
Moyna: Yeah, so, all of the participants talked about extreme sound sensitivities. And that was the main thing that they reported on, and this echoes a lot of other studies that have been written previously. And the two main things — well, the three main things that they reported was really difficult was the pitch of their baby’s cry. And some of the mothers were saying that as soon as the baby started crying, they couldn’t do anything, they had to go to them and just make it stop. And they’d be rocking, they’d be caressing, they’d be doing anything they could. And it sent this kind of high level panic, because they couldn’t cope with the sound; it was utterly overwhelming. And then you have the mothers who have children with colic who can’t sleep, who are, you know, always crying. It’s really overwhelming.
And the other thing was, you know, the toddler phase when there’s all the questions, the ‘Why’, and the ‘Tell me’, and that incessant talking was often described by the participants as being really challenging. And I think for a lot of mothers listening, they can probably relate to this in general. But if you’re already sensitive to sound, there’s toys that are making noise, there’s lots going on in the environment. You might be in a soft play, you know, I was in a soft play today for four hours, it was full on. You know, you’ve got all of this, it’s filling you up during the day, and then you’ve got incessant talking, and it just doesn’t stop. So, that was really tricky as well. The other thing with the noises of the toys and the equipment, you know, the uncle that buys you the whiz-bang-pop toy, you know, as a brilliant gift, but it’s actually really torturous for the mother because they can’t cope with the sound. So, it’s those sorts of things that were really hard.
The other thing, that the next sensory experience that was really reported high level was touch. So, being overwhelmed with light touch, and touch in general. And if you think of the role of a mother, the main primary caregiver, you’re the one providing all of the tactile input, mostly. You’re doing the changing the skin to skin, you’re often providing breastfeeding, if you’re able to, and that for a lot of the participants was utterly overwhelming. But the interesting thing, and this was something that was found in poll study 2021, and 2016 as well, it’s really good study about autistic parenting, of all the women that they also gather data from, they persisted in their breastfeeding even though it was painful, even though it pushed their through their limits, because they knew it was the right thing for their child. But I think for the participants in my study, it had a big payoff in terms of cost, because they were giving all of this tactile input to their infant, but then that would mean it would have an impact on their personal relationships, either with their family members or their other half. When about the children, they just — one of them said, it’s like it’s burning my soul, you know, that the feeling is burning my soul. It’s so intense. So, that was really, really difficult.
And the other thing that was mentioned quite frequently was difficulties with body awareness, you know, altered space, altered body awareness. One mother was saying that she was so frightened about falling because she — she really felt a different sense of herself in space. Her weight had changed, her physical body had changed, she really found it hard to calibrate where she was in space. That in the morning, her partner had to take her child downstairs for her and she had to remain downstairs all day. She couldn’t manage the stairs or go out, she was so terrified she’d fall over holding her baby, and she didn’t want to leave the baby. So, it’s these sorts of things. When you think about it, it has a really big impact on, you know, functional daily skills and that caregiving role as a mother.
Meg: Yeah, so that was your next category that you mentioned, the impact of all of this. Talk us through, what did you find?
Moyna: It was really interesting, actually. The biggest thing that the participants reported was the impact on their social role, or their social aspect. And a lot of them found that because they were unable to get time alone for themselves — so, if you think pre-children, you have lots of time after work, where you can just sit and watch TV, you can listen to radio, the time as your own. But when you’re a mother, that time isn’t your own until they go to bed, if they go to bed. So you’re constantly having this sensory stimulus throughout the day. And that was a big thing that impacted their social part of their life. They felt that they couldn’t engage in social interaction because they were just so full up with parenting. I think one of the mothers, I’ll quote her, said, “I’m just so full up with parenting that I have nothing else left for anybody else.” So, the way that they dealt with that was by withdrawing from work events, withdrawing from social events, and then that left them really quite isolated. So that that was — that was really difficult. So, the social side of things really impacted their lives.
And also, as an autistic mother, if your natural way of coping with sensory overwhelm is to withdraw and have periods of time on your own, as a mother, you’re expected to go to playgroup, to swimming, you’re expected to do those playdates, to go to school. All of those things involves social interaction, and you’re encouraged to do that right from the get go, you know. All of the — all of the nurses, all of the early years advisors are always saying, “Yeah, go and meet other moms, go out for coffee, don’t isolate yourself.” But for a lot of the autistic moms, they found that really difficult. They wanted to do it but they couldn’t do it in a way that made them feel comfortable and relaxed. And it had a payoff. So, they’d get home and feel even more exhausted. So, that was a big thing.
And also the other impact was work. Some of the mothers said that they felt work for them was a really important role, but it wasn’t always sustainable because they felt so full up with parenting and so full up with the sensory input of being with their child and meeting their child and their family’s needs. So, one of the mothers gave up work completely. So, she was unemployed as a result of that. Another mother went down to part-time because she couldn’t fulfil her work role properly. She couldn’t pay attention or focus. So, it had a huge impact in the area of work.
Meg: What about — what about their mental health? Did they talk about the impact that it had on their own well-being?
Moyna: Yeah, that was — that was a big thread that ran through a lot of the conversations that we had with the participants. And I think most of the participants experienced a level of anxiety, whether that was depression or not, it was a low level of anxiety which exacerbated following the birth of their child. And a lot of them linked that to their inability to withdraw and find a quiet time to recharge. They were unable to withdraw from the sensory impact of being a mum. And as a result, it kind of filled them up and led to high levels of anxiety and stress — higher levels of anxiety and stress, I should say. And some of the mothers reported that they experienced a delay in connecting emotionally to their baby when compared to the neurotypical mothers that they were friends with, and that concerned them. But I think when they were talking about it, some of them felt that it was because of the sensory overwhelm, and it took them a while just to process what they’d been through, you know. The birth and the experience, and then after that, they were able to connect when they felt more — more calm.
And then, there’s the overwhelming fatigue, that was that was another big thread. It was a constant thread of constantly feeling exhausted, and just feeling shattered. You know, the experience of being a mom with all the sensory input led to high levels of fatigue. And as I said before, many of the other mothers, they felt that they were burning out quite quickly. And they had far less energy and capacity to engage in other functional aspects of their life and meaningful occupations. Like, some of them were saying they used to do art, they used to do music, they used to engage in walking their dog, but all of these occupations that gave them meaning and gave them — kind of recharge their batteries, gave them more spoons — they weren’t able to do those things. So, it was — I think that was really difficult for a lot of the mums.
Meg: Absolutely. So, that’s a lot of needs that you were able to identify together with your participants. What about strategies? What did they need and what helped them be successful?
Moyna: Unsurprisingly, the main thing that a lot of the mums spoke about was the need for downtime. And I think downtime for a lot of the mothers was fairly similar in the way they described. It was total silence in an environment that was sensory soothing for them, so that that would have been walking in a wood with no one else. It might have been in a room with calm lighting, with their favorite music, with nobody else interrupting them. Some of the mothers were saying that their children went to their other parent on the weekend, and they would sit in their flat or their house for the entire weekend. They wouldn’t leave and that was enough for them to charge up to have enough energy for the next day. So, a lot of them reported this essential need for downtime.
Meg: That’s interesting, because, you know, I think a lot of neurotypical moms might have been listening to some of the last points you made and said, “Yeah, I also lost my hobbies and needed a break.” But it diverges here with what the needs are. Because, for me as a extroverted neurotypical mother, having coffee with other new moms was extremely recharging. And if I had sat in a room in complete silence, you know, somebody would have questioned, is this postpartum depression, what’s happening with you? And being able to identify this might look unfamiliar to you, but this is how I recharge my battery with —
Meg: In a room by myself that’s totally quiet, or out in the forest, or whatever. It’s really useful to be able to identify that because that could so easily be misinterpreted.
Moyna: Yeah. And I think some of the participants did report that they had a diagnosis of depression, but the majority didn’t. And I think the shared voice with the participants was the need for downtime. So, I don’t think that’s dependent on depression. I think it’s dependent on the fact that they’re just so full up in terms of their sensory input throughout the day that they just need an opportunity to reduce their sensory input. And the thought, for a lot of these mothers, about going out and socializing, that was not something that would be helpful at all. It was a clear, distinct difference. So, yeah, it’s good that you’ve highlighted that. Absolutely.
Meg: All right, what else?
Moyna: The other thing is, I said that it was really important to ask for help, but a lot of the participants said that they found it really hard to ask for help. Because in the past, they’ve been concerned that they’ve been judged. Their behaviors have been interpreted as lazy, or depressed, or mental health difficulties when in those situations, they weren’t always the core reason. So, I think asking for help was an important thing that they felt that the people that gave them the most amount of support were other autistic mothers. And a lot of the people that I spoke to in my study, they sought out informal support online, you know, in online forums with other autistic mums. And that was a godsend, you know, some of them said, it was a godsend, you know, these are the people that I can call in the middle of the night, and I don’t get judged, you know. And that’s really important to have people around you, that you can have those conversations with and don’t feel judged. So, asking for help was very, very important.
But the people in my study, only one person received formal help, and that was for attending appointments and such because they have such severe sensory overwhelm. But they reported that they had to train the person that was helping them about autism, because the person helping them didn’t really know what to do and didn’t really understand. So, she said it was — “It was frustrating, because I like the person, but it was really annoying. I had to train them what to do, because then that’s putting more pressure on me when I already need support.” So, I think, you know, help is important, but it has to be the right kind of help. And it has to be trained and professional help that understand.
Meg: Yeah, this just ties us back to the double empathy problem, right, that just non-autistic people are just not good at imagining and understanding the experience of autistic people. And fine, like maybe we’re in a position to support an autistic mother, and we’re neurotypical. So, we need to be listening, reading research like yours, so that we can listen to the voices of autistic mothers, and realize where we might be imposing our own perspective, and really missing the mark, and putting more burden on that autistic mom to train us and show us the way.
Moyna: Absolutely. And I think that the biggest thing was the sensory strategies that were used by the participants, this was something that was really helpful, because they were able to make really small changes to their environment. They’re using headphones or listening to their favorite music if they’re going into an overwhelming space, you know, these are low-level resources that have a really big impact. But I think the important thing is, if you don’t know you’re autistic, you don’t know you have sensory processing difficulties or differences, how are you going to know what kind of strategies to use, you know? It’s almost like you’re going through this blind. So, this is where I feel it’s really important, that if somebody is needing sensory accommodations or sensory strategies, that it’s informed with — an assessment is informed by a professional who’s trained to do that. Because a sensory strategy for one person might not be helpful for another, and I think that’s why they have to be really individualized. And you have to know the person that you’re trying to provide those strategies for and really understand them.
And this is where a lot of those sensory strategies in the past have just gone wrong, because they’re a blanket strategy that’s applied across, you know, a population of autistic people, you know. Everybody needs a weighted blanket. Well, no, they don’t, not everyone does. And, you know, not everyone needs are different. Not everybody needs to be chewing gum all the time, you know. You have to know the person really well and help them come to the realization of what might help them. I think that’s really important.
Moyna: Yeah. One of the other used strategies was all of the mothers, they read so much literature on ‘How to Mother’, you know, ‘How to look after their children’. They were very, very well read. But a lot of the mothers found that the resources that were available for autistic mums were not relatable, and they often read the resources and felt rubbish about themselves, because they didn’t feel this gush of love. They didn’t feel this overwhelming need to touch and hug and be with their baby. They were doing what they needed to do to meet the child’s needs, until their, you know, sensory needs caught up. It was — it was quite challenging. So, I think for a lot of the participants, they felt that there was a discrepancy between what they were reading, and how they felt that they should feel. So, there needs to be more relatable resources for autistic mums. And in fact, most of the participants found that speaking to other autistic mums online and reading about their experiences was the most helpful thing. So, again, if you’re going to help an autistic person, you really need to speak to an autistic person to get the right kind of advice, so I think that’s really important.
Meg: Yeah, it’s nice that the Internet makes our world a little bit smaller in that way. But again, to know that you’re searching for the experiences of other autistic moms, you do have to know that you’re autistic.
Moyna: Exactly, exactly. And the final thing in terms of strategies that were really helpful were planning and routines. So, a lot of the participants found that after the birth of their child, they were feeling overwhelmed. So, managing daily routines and getting routines that worked for them and established was really quite tricky. But some of the mums found that if they did something active in the morning, they could have a rest in the afternoon. So, talking about pacing, you know, as OT’s, we talk about pacing, we talk about energy out versus energy in, you know, we talk about all of that. And as an OT, that was really nice to hear that that’s something that was a helpful strategy that they were using. So, pacing, organizing their time, and having additional support for that.
Meg: Yeah, I do feel like you’re really speaking the OT language here talking about participation in meaningful daily routines, and how that’s impacted, and what support they needed to be more successful, including how they regulate their energy throughout the day.
Moyna: Yeah, yeah. So, I think, you know, in terms of — in terms of occupational focus, occupational therapists have a really unique role in this, in the understanding of how to manage occupations and how to pace and organize somebody, support them to organize their daily routines in a way that’s functional and meaningful to them. And in terms of needs, the autistic mums said that there were two main needs. They they needed access to other mothers who were autistic, you know, face-to-face in particular. They really wanted face to face. But of all the autistic mums I spoke to, they found it really difficult to find that face-to-face group. And then also they highlighted that professionals that they encountered throughout their journey into motherhood, they all predominantly needed really good training in how to support somebody who has a diagnosis, but also how to understand the sensory needs that might be presenting and some of the accommodations that might be helpful to suggest. So, those are the things that they said were really important.
Meg: I hope some of the trailblazing therapists listening are already planning their in-service presentations for professionals working with pregnant women and new moms to help build cultural competency in the needs of autistic people based on your research.
Moyna: What’s really heartening is since the research was published in the UK, I’ve had a few OT’s who are based in those services actually contact me and say, “Can you come and speak to us about the research and talk to us about how we can improve our services in identifying and supporting these women?” So, I think what’s great about OT’s is if they see that there’s a difference or difficulty, they’re really proactive in making changes in their pathways and their protocols. So, I’m really hoping that this is going to be part of that and can inform that.
Meg: Yeah, that is really hopeful. Okay, any other findings that you want to share with us from your research?
Moyna: The main final finding, really, is that, you know, we’ve been talking about it throughout this whole discussion, is the fact that diagnosis is so important. It’s the key to all of this, you know. If you don’t know what you don’t know, you’ll never be able to overcome some of those challenges, or at least face them with better informed information. And I think all of the seven participants were diagnosed after they had their child. And I think, after speaking to them, it was really clear that up until the point when they had their child, they had really good coping strategies in place, you know, they could — they could avoid, they could withdraw, they could manage their sensory needs with simple accommodations, they could access meaningful occupations in a way that made them feel good. But after they had their child, all of their time was taken up in the primary role of caring for their child, which absolutely, as it should be, but they were so drained and so exhausted from the sensory overwhelm that they couldn’t access that downtime, and they couldn’t access that renewal. So, I think diagnosis is so critical if autistic mothers are going to have the right support and the right kind of services at the right time. So, yeah, so late diagnosis. All of the mothers were diagnosed late.
The impact of not having a diagnosis was that nearly all of the people I spoke to had a simulated and negative sense of self, negative self-concept. Some of them said that they thought they were weird until they were diagnosed, or they were crazy because they were so different from others in terms of how they experienced their sensory world. And also, I think if you have significant sensory processing differences throughout your life, you don’t know that you have them and your needs are unmet. It can lead to mental health difficulties. And I think, you know, within my sample, there were individuals that had diagnosed depression, you know, anxiety, and difficulties in that respect. So, I do wonder whether there was a big contribution of the lack of understanding or lack of knowledge of their sensory needs and their diagnostic profile. If they had better awareness or better support, it might have been a different outcome. I don’t know.
Meg: Right, yeah. There’s so much opportunity here for better diagnosis, especially for autistic girls and women, a better process of supported self-discovery, understanding your needs, learning self-advocacy, support people being trained for the spaces where we are pregnant, and give birth, and experience early motherhood being more supportive. So many opportunities there. I want to circle back to you as a mom, and a newly diagnosed autistic person doing this research. Did these findings resonate with your own experience?
Moyna: Simply, yes. Yeah, they did. I mean, I think they resonated so much so that when I was doing the research, I spent a huge amount of time reading and rereading the data, reading and rereading, bracketing my assumptions, reflecting on my thoughts to make sure that what I was interpreting and how I was analyzing the data was truly the voices of the participants, not my own. And I spent a huge amount of time making sure I was accountable for that. And I spent a lot of time in consultation with my supervisors, I also sent the transcripts back to the participants to check that they were happy with my data analysis, that it reflected their experience, you know. I felt really strongly that I wanted to make sure that it wasn’t about my experience that it was truly about theirs.
And I think in particular, you know, for me, I had severe sickness. I was sick up to 25 times a day, up until five months. And for me, the sensory sensitivities of the sickness was so pronounced, I couldn’t even smell my own skin. I mean, can you imagine being that sensitive that the smell of your own skin makes you want to, you know, brings upon an episode. Sorry to listeners talking about this. It was so awful. And I just remember just feeling utterly overwhelmed by it. I couldn’t work because it was so bad. It really, it floored me completely. And my sickness was very much different from another person, you know, I assume a neurotypical — you never should assume. But, you know, they were saying it was more about the smell of food. But for me, it was, you know, the movement of screens, I couldn’t watch a television that was moving, I couldn’t look at my phone and scroll, because I would be sick. I couldn’t go from lying to sitting because I would feel very dizzy and I would vomit, you know, it was so intense.
So, I think, you know, a lot of the experiences that the participants shared, for me, were really aligned with my own experience, and particularly the sound sensitivity. I mean, even now, that’s still really hard. And I manage it with additional strategies, and I try and book in downtime with myself. So, that’s something that I do as well. Talk the talk and walk the walk. So, it’s — yeah. But yeah, it did. It really resonated quite deeply, I would say.
Meg: So, what impact do you hope that your findings will have on the clinical practice of OT’s and other professionals who are — most of us are working with kids, right? There’s a need for more services with young adults and adults, and often that need isn’t being met, as you’re highlighting. So, I want to ask you, what impact you hope it has on people who might be working with autistic mothers, but also, for those of us who are working with autistic children who likely or possibly also have autistic mothers?
Moyna: Yeah, that’s a really good question. I think as an OT, you know, if you work in pediatrics, and you work with lots of children who are autistic, you know, we’re finding that if you have a child who’s autistic, the likelihood is that there will be one of the parents that will also be autistic. So, I think it’s really important to be mindful of that fact that when you’re working with young autistic individuals, that you may also be working with an autistic family, and to be really sensitive about that and use really positive language when you’re describing some of the difficulties that the child might be experiencing. And reframing it in a way that doesn’t make it the child’s fault that it’s actually, you know — I always talk a lot in my own clinical practice about the environment. You change the environment, you’ll improve the trajectory of this child’s functioning, you know, within the environment, despite the sensory challenges.
And I think it’s important as OT’s that we remember that young autistic people grow into autistic adults, and some of those may want to go on and have families. And I think the important thing is if we empower these young people with the knowledge about their sensory differences and how it can be great for them in some ways, you know, they can hear things that other people can’t, they can smell things that other people can’t, and that’s amazing, you know, it can be brilliant. But it can also be really challenging in the wrong environment. You know, and I think if we can, as OT’s, if we can discuss with these young people, also with teenagers and adults, about what the impact of sensory processing may be and how that might affect them growing up, but also empower them with strategies that might help them cope, I think that will lead to a better trajectory in terms of when they’re getting older.
Meg: Yeah, so not pathologizing —
Meg: — what we’re seeing, describing it, identifying contexts that are challenging, and supports that might help a child be successful. And I hear you saying, we’re starting with children, laying that groundwork for self-advocacy throughout their lives, that peace and compassion these mothers never got. We’re starting with our kids.
Moyna: And I think, you know, you’ve probably had it in your own clinical practice when you’re talking to a parent about a child’s sensory differences. And I always say ‘differences’ rather than, you know, ‘difficulties’ or ‘disorder’, because I think, you know, there are differences, you know, and it’s across a spectrum of, you know, brilliant to challenging. And I think you have to be careful about the language that we’re using. And I always spend a lot of time explaining to the parents, this is what’s going on in my opinion for this child. This is how I feel that it’s impacting their life. But I also encourage the parent to discuss that with their child so that they have a good language to talk about that. And in those discussions, if the parent recognizes — I mean, you may have had experiences where you’re talking about about sensory differences with the parent and then suddenly you get that look on their face, it’s the dawning of realization, “Oh, that’s what it is. That’s — oh, I feel that too.” And I think those, I’ve had so many of those conversations with parents, and I think it’s about being really sensitive, really careful, and really compassionate about those conversations, and saying, “Okay, you know, if you have those experiences, you know, that’s okay. Do you want to talk about it a bit more,” you know, obviously, within the remit of your role within the care that you’re giving at that time. But I think having those conversations are really important and normalizing it, as you say, not pathologizing it. It’s really important.
Meg: Absolutely. I love that. So, what about those of us who might be in a position where we’re working with an autistic mother? What do you hope that they would do given your research findings?
Moyna: Well, I think professionals working with autistic mothers, I would love to hope that they’ve read this research and they can develop a deeper understanding of how some of those sensory differences might affect their participation in everyday life, and particularly affect their role as a mother, and have conversations around what they can do to improve their accessibility to downtime, their accessibility to strategies that can soothe their sensory experiences, that can kind of offset some of that overwhelm. That would be really helpful. And for them to really empower the person to develop their own self-regulation strategies that meet their needs, so that they feel that they’ve got a toolkit of things that they can use to then go ahead and deal with their daily life on their own terms, so that they’re not withdrawing so much and more at risk of isolation. I think that would be really helpful.
I hope that local services that provide support and care for mothers have more training, but in particular, I really want them to have more specific sensory processing training from professionals that have had additional postgraduate training in sensory processing. And I think it’s important that these services understand how sensory processing challenges or differences may present in autistic mums, or autistic people in general, and so that these service protocols and pathways can then be redesigned or expanded upon to improve the user engagement and accessibility to those services. Because at the moment, what I’m hearing from the community is that the services as they are currently are fully accessible, that they’re not set up to be sensitive to the needs of individuals with sensory processing differences, particularly mothers in, you know, birthing units with bright lights and lots of noises and open plan rooms, you know, I think there could be a lot to be done environmentally that would just be so simple, not high resource, but could actually be really impactful. So, that would be amazing if that was considered.
Meg: Yeah. There’s so many calls to action here in your research and in your talk, and we’re gonna — we’re gonna wrap it up with key takeaways. If people listening change one thing, do something differently, what would your key takeaway or key takeaways that you hope professionals listening to this talk get from us today?
Moyna: I think the the key takeaway is that all of my participants were undiagnosed at the point that they came to become a mother. I think, you know, it’d be great that we can improve accessibility to diagnostic protocols, diagnostic pathways; earlier identification would be amazing. I think it would definitely improve the trajectories of a lot of autistic mums. That would be a great takeaway, I think.
Meg: I love this reclaiming of early identification. It’s not, “We need to diagnose red flags for autism disorder early because it’s bad and we need to identify it,” it’s, “We need to teach children that they are autistic as early as we can, so they can learn their authentic selves and get the supports they need to be their authentic selves fully in the world.”
Meg: I love that reason for early identification. Moyna, it’s been so lovely talking to you today. Tell us what you’re working on now and where we can find you online.
Moyna: Well, I’m currently working full time in my independent practice. I’m a lecturer for a Master’s program in sensory integration. I provide supervision and mentorship to students and therapists. When I’m not doing that, I’m training my rescue dog to be a therapy dog, I volunteer for the National Autistic Society locally. And you can catch me on my website or on my Facebook page.
Meg: Wonderful. I will link to your research study and your website and your Facebook page on the show notes. Thank you so much.
Moyna: Thank you so much for having me.
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.