Interview between Speaker 1 (Meg) and Speaker 2 (Sarah Selvaggi-Hernandez)
Episode 38: Autistic Motherhood & Self-Advocacy
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 our professional therapy practices. 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 38! This is our last episode of the year and then we’ll take a short break until January. Make sure you check out our New Year’s Party at learnplaythrive.com/party. For 2022, we’re sharing all three of our free trainings on demand for a full week in January. It’s totally free and there’s also a private Facebook group for you to share what you learned, ask questions to your community and your instructors, and connect with other like-minded therapists and professionals. Grab your spot because this is a New Year’s Party you don’t want to miss; learnplaythrive.com/party.
All right. Episode 38 is with autistic occupational therapist, Sarah Selvaggi-Hernandez. This episode ties us back to Episode 33 with Moyna Talcer about her research on motherhood and the sensory experiences of autistic adults. So, if you haven’t heard it, you may want to go back and listen to that episode as well. So, in this episode, Sarah and I talk about her own experiences as an autistic mother, as well as her own process of learning about herself and learning self-advocacy. There are really so many takeaways in this episode for people working with children who may have autistic mothers, for people working with autistic children who may grow into autistic mothers one day, and for people working directly with autistic mothers themselves. Here’s the interview with Sarah Selvaggi-Hernandez. Hi, Sarah! welcome to the podcast.
Sarah: Hi, Meg! It’s so wonderful to be back.
Meg: It is always great to have you back. All right, so in this episode, we’re piggybacking off of Episode 33 when I spoke with Moyna Talcer on her research study, which is called ‘ A Qualitative Exploration into the Sensory Experiences of Autistic Mothers’. So, the backstory is that you and I had scheduled a podcast interview on this topic. And then, Moyna reached out just completely coincidentally with her research findings. And so, we got her on the podcast first, talked about her research findings, and now I’m following up with you. And I did talk to her a little bit about your response to reading her research, but I wanted to revisit that with you directly. How did Moyna’s study land differently to you than other research on autistic people that you’ve read in the past?
Sarah: Sure. So, when I first approached Moyna’s research, I immediately — the first thing that came out at me is that not only is she doing this amazing study, which I have a personal love for qualitative research. Whenever I see research on a culture on a community of people, I want to see the voices of those people reflected. So, if that means it’s qualitative, if it means that it’s mixed methods, I really always appreciate seeing the voice of the people the research is intended for. And then, lo and behold, found out that Moyna was autistic, and not in like use-the-word autistic. And really, like, you know, in the beginning of the study, it talks about her experience of she could not find this type of research and so she created it. And immediately, that in itself floored me because I am always talking about and focusing on equity and access in autistic culture. And so, just to have an autistic researcher who claimed that and who owns that was really powerful for me.
The other thing that I was just — I loved seeing was the focus on sensory. In the field, I’ve been astonished at how biased people are about sensory, about research from autistic people. I know we’ve actually talked about this but wildly, I experienced recently, I was in a did a presentation. And there were people, autistic presenters there, and some of them were using a letter board to communicate. And literally in the chat, people were asking as the presentation was going on for evidence that these people were autistic, that evidence that this was, you know, something that was self-controlled. The insinuation that people who could talk were not autistic. And so, to have an autistic researcher come and claim this space is just super powerful. And focusing on sensory, which people have bias about. And why it landed differently from me is that I, like literally every single person in this study, was an undiagnosed autistic mother with an undiagnosed autistic child. And it felt like reading something like a Facebook message, like I could see the conversation. I could feel the conversation. It was probably one of the first times that through the qualitative research I felt represented from my experience. And so…
Meg: That’s really remarkable. And for people who are interested in her methods, she does talk about them a lot in Episode 33. So, if you are listening and you missed that one, go back and check it out. And I know, Sarah, you and I have talked before about the outcomes of research and often what we’re looking for is people performing, masking, and people acting less autistic as the desired outcome. And you’ve talked about how you just sort of have to brace when you read research on autism, like what sort of traumatizing methods and inappropriate outcomes are they looking for here, and kind of how you breathe a sigh of relief, like you just described, as you saw an autistic researcher listening to autistic people, validating their experiences. And that certainly should be the norm and the starting points. But like you said, I want to shift to your experience. So, you’re an autistic mother with neurodivergent kids. And you picked this topic before Moyna sent us her research, and it’s so fun to link these two episodes together. So, tell me why this topic is important to you, sensory processing and self-advocacy through the lens of motherhood?
Sarah: Yes. So, when I became a mother, I was like every single mother, but I almost say — like I always say, I’m two to three standard deviations from typical. So, I did what many typical people did and, you know, looked for the book, looked for the research, looked for, you know, the way to be. Because my autistic mind was seeking that. And I was actually very fortunate and having a really good group of friends, which was something that Moyna did put in her research, having like-minded individual, I also — yeah, I found a community and it helped me to establish my own parenting identity. And when I think about identity work and I think about being an autistic mother, I realized — and I actually — like, this as a continuing realization. A lot of my approach to motherhood was based on my own trauma as a child. And so, what I have realized is that there is no book for me, there is no protocol for me, there is no way that we understand how to tell autistic people to parent, because so many of us were unidentified or identified autistic people with likely unidentified autistic parents themselves who were making decisions based on likely their own trauma.
And so, and then I looked at the literature again. So, I passed by — like, first pass through the literature, I got really upset at it, because you see anxiety, you see — like, I basically see the 1960’s literature which is refrigerator mothers or institutionalized mothers or absent fathers, just rephrased in a nicer way in 2020. And so, that was actually a big for [whoosh] for me. Instant. Oh, man, we are a population of people who almost probably — not almost, I don’t know the — I don’t have a p-value. But many of us were taught how to parent from a traumatized space. And we are parenting to avoid the trauma that we experienced as being undiagnosed, etc., etc.
And so, I have been realizing, for me and for other autistic people, that we have to establish our autistic identity first before we can really put so much pressure on ourselves to be perfect parents, to be, because there’s really no such thing as a perfect parent. It’s, you know, parenting from a place of authenticity. And parenting another person, that’s something — that’s a shift. I know what we’re going to be talking about shifts. But the idea that my child is a person and not just something that I am responsible to mold was not something… It just wasn’t taught to me. And so, I found that I have to give — and other parents — have to give themselves a lot of grace in first learning who they are, and then learning as their authentic self how they parent.
Meg: There are so many connections to some of the themes of the podcast that you’re making here. And they kind of tie through the generations of the autistic mothers’ experiences as a child for as we know, so many autistic women are late diagnosed. And it’s come up over and over again that they were taught they were bad, or defiant, or just weird. They were taught all these negative things about themselves and later it was, “Oh, I’m autistic. I’m okay.” I personally, I did — I have a friend who is maybe neurodivergent who has a toddler who is probably autistic. And the neurologist has kind of been saying yes, she’s autistic; no, she’s not. And she said, “What do you think?” And I said, “Well, I’m not a diagnostician,” but I told her, you know, what I had observed. And she said, “Is it important for me to get the diagnosis?” So let me tell you, you are a person who loves and accepts your kid for who they are. And that’s going to be a big strength for her because you are going to let her be her authentic self. My friend isn’t someone who is really invested in her typicality. So, but your kid is going to be surrounded by other people who are.
Meg: And being able to explain who your child is in a way that is meaningful to other people, that you can advocate for, and that she can learn to self-advocate for and accept, instead of people continually trying to get her to be somebody else is going to benefit her in the long run. It’s like, let’s stop this before it starts, which is impossible, but try to. And do I hear you saying like, “Oh no, I actually went through my whole life kind of being traumatized as a non-autistic — an unidentified autistic person. And now, I’m trying to parent from that place.” And we forget that the moms, the parents who we’re working with, have this whole history. And the other thread you brought in was authenticity. Like, you need to parent in a way that’s authentic to you, and raise a child who’s authentic to themselves.
Sarah: Yes. And the reality is that developing an authentic sense of identity is a rebellion in this society, because the literature —
Meg: Wait, stop. “Developing an authentic sense of identity is a rebellion in this culture.” I just — I just wanted to say that back to you. I love it. Okay.
Sarah: Yes. Because the literature and the way that we think of identity is oft — is always termed, if we’re going from a neurotypical lens, about how we are viewed from other people. And when we know that people are largely viewed from deficit-based… We, I mean, we’re just really set up for learning ways to mask, learning ways to gaslight ourselves, learning ways to accommodate other people. And we miss that piece of we are human, and we have human rights, and we have a right to be and exist and live as we are. We are people. And I think that separating identity, and like personal identity and parenthood, is a really powerful thing because once a parent realizes maybe they never have had the opportunity to establish their identity, to make decisions about their identity, how can they model and teach that for their children? Well, it’s really cool, you just start. You literally, like the moment that you realize that could be a possibility for you, you start. And then, you do it in front of your family, do it in front of your kids. Talk about this process. Because we know, people on the spectrum, we have difficulties with ideation, we have difficulties visualizing what something looks like, we have to see that work being done. And the reality is neurotypical society is never going to do that for us. And while society at a very cultural level — I want to acknowledge that there’s a lot of people who are trying something different. And like Moyna’s research just is one of the things. Like, maybe we experience things differently, you know, and that’s — like, just knowing somebody else experiences differently; again, modelling, seeing that truth, gives permission to ask the question of yourselves.
Meg: I love this. I love how you talk about modelling the process, not some end product being what matters to children. So, our goal isn’t, “Well, autistic mothers need to be fully self-actualized, need to fully understand and accept themselves, have a good sense of what they need, and know exactly how to ask for it.” No, you’re saying whatever the first or the next step in that process is, they can model that for their children, and do it for themselves. And that’s what matters the most. And you show us this, Sarah, you talk — you’re so reflective of your own process. And there’s so much to be learned from that. And one of the pathways that you’ve really explored and talked about your exploration of is learning your sensory profile, figuring out what you need, and figuring out how to get it. So, I want to hear more about your experience of motherhood from a sensory processing perspective. I have two young kids, neurotypical, and motherhood in my, and probably most people’s experience, especially in the early years is overwhelming in every way, right. Executive functions, sensory processing, emotional regulation. But what are some of the ways that might be different for you?
Sarah: Sure. So, the first thing that really popped up for me as a mother, like I said, I was really struggling. I wanted a book. I wanted somebody to tell me what to do. And that’s total typical human behavior, you know. We want to see what’s been done, we want to explore what’s out there. But the second part of that, and then the thing that I find that was difficult for me and also difficult for other people who are on the spectrum, is that we don’t get to the second part, which is, “Is this right for me?” And going through the stages of trialing and seeing if it works, if it doesn’t work, what’s working, and really piecing that like, task analysis. But pulling it apart and seeing what can we keep that’s good, and what do we need to refine or reinforce, or just throw out the window. I think that has been really important for me, the reflection process. Learning a transition process has actually been really important for me as an autistic mother, something that I really commit to. Because as an autistic person, I am crummy at transitions. Like, it doesn’t stop because I passed 18 or 25 or anything. And even just that realization that, “Oh, whoa, wait a minute, this is actually hard for me,” and my friends and I, we joke. Like, we all identify as autistic, we’re all empowered by our neurology, but when things sneak in that we’re not — we’re like, eye roll. Like, darn it. We call it the ’tisms. I’m like, here come the ’tisms again.
Meg: What is the transition process? What does that mean?
Sarah: So, the transition process for me as a mother means that every single time that I go to do something new, my brain wants to go through the entire process of ideating, planning, sequencing; like really having a firm understanding of what it is that I need to do and what I’m hopeful will happen. So, that is a lot of mental practicing. And what I realized is I have to make space for that. I do it in different ways. I do a lot — I personally do a lot a lot of journaling. I write myself a lot of letters, and just kind of give myself adequate space for preparation, adequate space for engagement. Like, what is the activity, what are we doing; and I’m talking like, it’s just as simple as dinner. Transitioning to — like, for example, today, my son is going to his grandparents’ house. And so, really being mindful that my brain wants a lot of information. And in order for me to feel regulated, I need to give it all of that information. Then, during the transition process, or well, after we have the activities, so we transition to the activity, and there’s also the transition from the activity.
So, between that, reflection. How did it go? Are we having fun? Is this even something we like to do? Those are all parts of a transition. And I don’t think that was ever explicitly said to me. The last part of my transition planning was actively working to budget time for restoration. Therapy is all about maximizing the hour, right. And we think about restoration as the ride home. Well, what if number one, therapy is in the home? What if, number two, there’s nothing comfortable about the home? Like, we really need to give people a chance to mentally process and wind down. And I need that as an adult. And so, therefore, it’s reasonable for me to say my kid also needs that. I make the process very explicit for my children. I didn’t do that in the beginning. Transitions? I, we — I used to describe my transition process as a bat out of hell. Like, I would sit there and be like completely still and then all of a sudden, it was time to go. And we just had to rush, and we had to do. That’s what was modelled for me. And when I realized that I was not — when I sat and I really thought about it, I wasn’t enjoying that process. And so, creating a new process for myself and realizing that I have the ’tisms, things are going to be hard for me, I have difficulties with communication, I really do. So, for example, in my family, we largely have migrated to texting. Like, reminders and things like that, no judgement. That’s really powerful. I have started personally using sign language more. What a relief on my brain. Yeah, just…
Meg: I love how you’re bringing all of these different components together for us. That it’s not just sensory processing, its executive function, its communication. And these insights are important to those of us who might have the privilege of working with adults and working directly with autistic mothers. But also, to those of us working with children who have an autistic parent, it’s so easy to act like the child doesn’t exist within the culture and needs of the family. And we just say, “Oh, you just need to do this, this, and this, and this.”
Meg: Without taking the time to ask the questions and reflect on what the parent needs from, for example, that transition, what they need before it, what they need during it, and what they need after it. That’s a lot of us slowing down and becoming curious in our therapy process with our families.
Sarah: And think about the impact of a therapist or somebody who’s working with a family. Again, autistic adults are grown up, theoretically, right. I would — I don’t want to grow up, but theoretically, we’re grown up autistic children. And so, the same thing that our children are struggling with, we likely struggled with as a child, and we may not have had an opportunity to develop those skills in an appropriate way for our neurology. And so, our skills may just be lacking. And that’s not our fault. There’s nothing wrong with us. We’re not broken. It’s just simply something that’s never been done. So, the power, like we talked before about modelling and seeing things done, what if we make this explicit to parents during the therapy process when we’re doing it with our kids, or our caseloads, and our clients, and all these? Like, when we’re doing it, say, “Hey, this is really important.”
That might be the first time a parent, especially an autistic parent, thinks or is told that all of these are a part of an activity and we have to create and protect space for all of these components in order to support success. I cannot tell you personally how many times I have seen another mother, another parent, another father, another uncle, like somebody interact — and I like to call it, it’s transactional negotiation — interact with somebody else, and I see it play out. And I’m like, that was amazing. I’d love to do that. So, it’s just such an opportunity. And we don’t think — like, yes, we think about interacting with parents in early intervention, but not necessarily once they hit that school age or even outpatient. But it’s, we just have such an opportunity to make broad generational impacts.
Meg: Yeah, that’s an important perspective. It really is. So, one of the things that you described is this concrete strategy that helped you, was the transitional plan. Were there other specific things that you found helped you and continued to help you in parenthood?
Sarah: Sure, so I always talk about my sensory profile. I know it, love it, hug it. I mean, it’s one of the things in my family, is that I’m very — we were very concrete with using sensory terms, because it was something that I understood, and my kids picked it up lickety-split. You know, they know thresholds. They know, you know, mommy’s audits. I have — Mama’s like, “Mommy has a really teeny, tiny auditory teacup, and it gets filled,” and we have that kind of communication. And so, sometimes I’m like, “I need to go drink my tea,” which means regulate, and just bring it all down. And what I like about using that type of language is it talks about my threshold. It does not make — and I always reinforce — it’s not their problem. It’s not their fault. I am actually the adult responsible to co-regulate. And so, therefore, I need to know my own thresholds, my own limits; I need to be empowered to communicate compassionate boundaries, because that’s a real thing. We’re still two people interacting with each other.
And I think that another really big thing that I have been exploring for myself is the use of passive strategies. There’s a lot — and when we talk about passive strategies in sensory processing, there is a lot of confusion as to what those are. And I have to tell you something, I did a big [eep], I actually contacted Winnie Dunn. I met with Winnie — I met with Winnie!
Meg: Winnie Dunn is so kind and accessible. I love that about her.
Sarah: Super, super accessible. And I just, you know, I do so much reading and I wanted to actually check in with her and be like, “This is how I’m applying, you know, your words and what you wrote, and how does this resonate with you because this is really powerful for me.” And so, my understanding of passive strategies now is so near and dear to my heart, because passive strategies are things that you do to set yourself up for success in the environment. Make things stick out, making sure that things are there for you, they’re accessible, that things are ready for you when you need to access them. And what I realized through that process of saying, “Okay, I have to set myself up with passive strategies,” I’ve got the ‘doing’ part down, those actives. Like, I’m really good at that. And then, switching it to looking at more contextual, constructional, and environmental, social environment, kinds of strategies to really make me just be okay where I am. It just revolutionized my parenting.
And what I want to say is that also, like engaging in and maintaining and trialing, the research has shown me that there’s difference in types of stress. And so, my amygdala, anytime it has any kind of stress, it’s like, “Danger! Shut down!” And so just to say, okay, well, am I experiencing ‘you’ stress — which is positive stress, when you get stressed out from doing positive things, and it’s actually a really great space to be in order to create some of these new passive structures that I’m trialing — or is this ‘distress’, is something that’s negative for me? And so, even just that, at a sensory level, to tell my brain this stress interoceptively that I’m experiencing is actually a good thing, I’m doing the good work. And how can I then — like, if feels different when I’m looking at reinforcing my passive strategies that I have in my environment, I’m creating a sense of dysregulation for myself through ‘you’ stress. When I regulate that, it feels so different. Because then, it’s about positive. It’s about, “You did this. You’re amazing. Have that tea. Like, please sit down.” It was revolutionary for me. Passive strategies, realizing about how that’s valid and an incredibly important part of sensory processing. Because attitudes and culture, like all of that plays into the processing part. And that’s…
Meg: Yeah. Yeah, I love how you keep coming back to really going through the process of regulating, not kind of reaching an end point. And, you know, it’s just like, we might say to our kids, “I’m feeling really frustrated, I’m gonna take a deep breath,” and we’re modelling that. We’re not just trying to pretend like we’re calm all the time, ideally, to our kids, right? We’re showing them that there’s a range of human emotions and here’s what we do when things are hard. You’re showing them there’s a range of what people can tolerate and what people need from a sensory processing perspective, here’s language you can use around it, and here’s what I’m going to do to meet my own needs. Because I, as a mother, I’m still a person and that matters. And you, child, one day will be a grown up and your needs will continue to matter too.
Meg: Yeah, it’s great modelling. And I should say, Winnie Dunn is, for anybody who might not know, she created the Sensory Processing Framework and the Sensory Profile. She was on the podcast too on Episode 16.
Sarah: I knew it! I said it was Episode 16 in my head. I loved it so much.
Meg: Really? Oh, my gosh, I had to pull up a spreadsheet just now. So, if people want more of her, they can go back and check it out. So, I want to ask you, Sarah, what types of shifts would you like to see in how we as a culture support autistic mothers?
Sarah: Sure. One of the things that I think about, so we talked about earlier in the podcast is that a lot of people really haven’t established their identity as an autistic individual yet. And that is really critical and important before we think about the ways that it’s applied to motherhood. And the reality is that we don’t know that process. We’ve talked about before, that the research just reinforces this idea that we’re anxious in this, that, the other, or aloof, or cold, or absent. That literature in the 60s recommended that all autistic children be deparentized. And what, again, I came back to is we are genuinely anxious, stressed, we don’t know the way, and sensory processing is important to us as an individual. A lot of the conversations that we have come and they focus on, well, what is right, you know, specifically as mothers, or specifically during the act of parenting. But it’s important that we dial it back and look at the individual themselves. Do they know how to regulate? We talk about co-regulation, and it’s important then that we understand and support neurodivergent regulation. Some of the things that I’m shocked that as parents we’re not talking about more.
One of the big literature’s yada-yada is that there’s a disconnect between parents and their intimacy and closeness. Why are we not talking about sensory processing and intimacy? Why are we not talking about how important certain repetitive behaviors are quote-unquote, ‘for regulation’, genuinely important? I actually had a big conversation with my friends this week, and oh, my fancy friend, her name is Jen Soros. She is an OT, who is a professor for Cleveland State, and she literally wrote the chapter on sex. Why are we not talking about how regulating sex is? And oh, you don’t have to have sex with another person. There’s so much shame about some of our most powerful sensory regulators. And so, the conversations that me and my friends are actually having is how do we make space for ourselves for things like functional masturbation? How do we make space for ourselves to have the type of intimate touch that we need? Do we even know at a sensory level what that is?
And what we do also know from the literature is that when you are able to understand who you are, what you need, and how you connect, whoa. That’s extremely powerful. Autistic people, per the literature, autistic adults are largely into BDSM. They’re largely into a lot of different — like, they like things that have structure. They like things that have control. Like, have you ever explored that with yourself, for yourself? And have you ever explored that with your partner? The research is clear that when you have a more attuned relationship with your partner, whatever that looks like, then you are more regulated, and then you can enter into co-regulation with your child. So, I think part of the culture — I bring that up because, like, who talks about sex? Nobody. But what if? And, you know, as somebody who is supporting an autistic family, or what if autistic families themselves really sat down and said, “What am I doing for myself at a personal adult level to regulate so that I can engage from a regulated place with my children?” There is no — and from my time on the board of education, there’s literally — I know this because I tracked it the whole time. We are not teaching neurodivergent strategies in sex education. We are not talking about those kinds of things. And we’re turning — we have parents now who are completely dysregulated, don’t know themselves, don’t know who they are, how to connect, and that dysregulation is carrying on. So, we really need to focus on autistic individuals in what they need.
Meg: Yeah, this is so important. And it does actually make me realize that we haven’t done a podcast episode on sex yet, and should have, and should. And I love that you tie that into a cultural change, because in our current culture, it would be very unexpected and uncomfortable for a therapist working with a child to ask the parent like, “Do you have time for self-regulation and sex?” right, that’s not accepted within our culture. And how can we move towards acknowledging and accepting and embracing all of the different ways we learn about ourselves, and regulating ourselves, including sex from all the conversations.
Sarah: I find, in my — so, in my sessions, that actually comes up a lot for me. I don’t know if it came up a lot for you, but I felt like I was always having the masturbation conversation with parents.
Meg: Oh, about their kids. Yeah. Absolutely.
Sarah: And so, when I reframe that as, you know, “Hey, it’s a really neurological need. How can we create safety around this? How can we create acceptance? How can we support hygiene,” all of these kinds of questions, just again, modelling that it’s important to see this being and all of their needs. Sex is an ADL, and maybe we are first the bridge to support the parent and the child, but we also might be the first person to posit to the parents that whole, “Man, I don’t have this in my life, and it’s super regulating. Why not?” Can I — you know, then there’s a cascade of questions. So yes, I do agree. Like, that might be something that you wouldn’t ask in the outpatient clinic. But I think it’s important to talk about just in general, and reinforce the idea that we are autonomous beings with individual needs.
Meg: Yeah. It’s like you’ve talked about that what the parent models cascades down to the kid, how we respond to a child’s differences and needs can sort of carry over to a potentially autistic parent who’s learning how to relate to themselves differently as they see this affirming way that people might be hopefully relating to their child. That’s lovely. What other advice do you have about those of us who might work with children who maybe have autistic moms?
Sarah: Yes. So, one of the things that I thought about when I approached this question was, “What do I need as a mom?” and I’m actually very privileged that for three months, I hired myself a PCA to really help me. And some of the things that for me were really important, it’s like people assume it’s simple stuff. So, things like cutting up vegetables to have them to eat, or just having things that like, I actually love to clean, but I need everything set up for me because I have a very low — I have a very damaged vestibular system. And so, putting my head up and down and up and down to go gather items and stuff like that is really dysregulating for me. And what I wish that more therapists would do is to be an active part of the ADL and the IADL process, meaning the things that we, you know, all the things that we have to do during the day.
Again, just being with a child while — so, say mom or dad or caregiver is preparing lunch. Well, do therapy in the kitchen with them. Let the child see the beginning of that lunch process and the end of that lunch process. We want to talk about how we have to create and protect space for both the parent and the child to trial some of these new things. We have to create and protect space for the child to see the parents doing typical parenting occupations. Because again, a little child’s autistic mind, we have — like, our temporal cortex? Phew. Like, time means nothing to us. And so, just starting that conversation and letting a child see the beginning and end of a parenting activity, I think would be really important.
Meg: I love this in so many ways. I know often we feel like it was easy to feel like a session is sort of a performance. Everything has to be prepared, the parent has to be fully present and not anywhere else, and with us, and ready and, you know, “Oh, we’re gonna do this food chaining. Please chop this food into this shape in advance and have all of this ready.” And I just sort of relaxed when I heard you describing, “Hey, let’s set all of this up together and have the child, let’s see how that goes. Let me problem solve that with you. Let me make this an important part of the child’s life alongside of you,” that that parent’s routines matter too and are part of the child’s daily routines.
Sarah: It’s so important for us not to make more work.
Sarah: And if we are going to make more work, or if we’re trying to say, “Hey, this might be something beneficial for you to then create and protect that space for people to engage in it.” I think about, you know, I’ve heard a lot of my friends who have PCA’s say that they often feel like they have to train their PCA in their own sensory things. That’s something that we can also be working with, is just having a conversation between a parent. Like, “Is this noise a lot for you?” and starting the conversation. Like, how does noise affect you? The reality is, a lot of times autistic parents have never given themselves the space to even ask that question. And so, we’re asking them to then go or to immediately advocate and know their needs and train. Well, the reality is that they don’t. And so, just being the first person to suggest that this may be affecting them, “How is this affecting your parenting?”, without judgement is powerful.
Meg: Sarah, of everything we’ve talked about today, what key takeaways you hope therapists get from our talk?
Sarah: So, my key takeaway that I wrote down over here, I actually did not talk about today and so I’m going to bring it up. I really want therapists to take a better and stronger role in identifying respite resources for parents. I am — I’ve talked about this before, but for 20 years, we’ve been therapeutic foster parents for the state of Connecticut, and I primarily took in the past almost decade neurodivergent children. And what I realized, which was actually very shocking to me and humbling for me, is that every single parent that I was working with, the biological parents, were just like me. I just had some intersection of privilege that, I don’t know, I don’t know, it just protected me. It protected me. And so, when I thought about that, I was like, respite is so important, and I knew that in foster care. I looked into what was available in the community. It’s not. It’s not available. It’s so expensive. I get vastly underpaid. I’d make $2 an hour as a respite worker. And I do it because it’s necessary. I actually support all of my old family. We have 100% reunification, everybody’s back, and I hold this space for those people because they need respite. I would love to see our profession create more meaningful spaces and opportunities for respite, because we talk about like sensory processing, and how do you regulate, and well, you can’t do that if you don’t have any time for yourself. So, either by creating — you can create non-profits. I looked at it, you can do so many things that has a lot of executive functioning attached that I can’t figure out. But I would love for us to really work on creating opportunities for parents to establish their own identity and figure out sensory processing that works for them.
I want to reinforce that the literature is so deficit-based, and challenge people to invest in cultural competency and realize that they really, really do have a deficit-based opinion and view and perspective of not just the children that they’re working with, but the parents that they’re working with. And it’s affecting therapy, its affecting identity, it’s affecting how these children are turning into adults. I’ve been — I am saddened, frankly. I don’t believe that working with the autistic population should be entry level. Like, I feel like you should have some type of culturally competent autistic-led training on how to really support autistic families. And to — so, my last takeaway is I really think that we need to develop stronger protocols for a therapist to make sure that they are really truly doing contextual analysis, really digging into the culture of the family, and meeting the family and their needs as the whole perfect, beautiful family that they are, and treating them like humans who deserve that support.
Meg: Thank you, Sarah. Tell us what you’re working on now and where we can find you online.
Sarah: So, I’m currently working on my website. I realized that I have to kind of skedaddle — not skedaddle, I need to establish a web presence. I’m primarily on social media. And so, I finally got in contact with a autistic web developer and I am in — it’s gonna be so fancy. So, I’m in the process of releasing that. I’m also proud to tell you that I’ve officially started doing my sensory profile work, and I took my first 20 clients. Like, I’m using my process to figure out what actually works for me. And I’m really, at this time in my life, really just developing myself as a professional. I think, like many OT’s, COVID messed up my perception of what it meant to be an OT. And so, I’ve been saturating myself in being the only person who answers that question. That’s — that’s powerful.
Meg: That is powerful. And I will link to everything in the show notes. Thank you so much, Sarah.
Sarah: You’re welcome.
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.