Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / Can One Autism Spectrum Really Hold All of This? A Conversation with Laurie Dove of Everyday Autism Essentials

Transcript

Can One Autism Spectrum Really Hold All of This? A Conversation with Laurie Dove of Everyday Autism Essentials · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to the Inchstones podcast. Today I'm talking with truly my dear friend Lori Dove, the mom behind everyday autism essentials, and someone who I so deeply respect about the way she talks about autism through the lens of nervous system regulation, behavior, safety, lived experience. And Laurie has been parenting autistic children for well over a decade, first with her older son, and now her daughter Liberty. And she brings such a honest and vulnerable perspective and deep humility to conversations that can be polarized very, very quickly. And Lori recently posted an article that was in the New York Post questioning about whether the diagnosis of autism, the definition of autism, has become so broad that the diagnosis has lost some of its meaning. And I have a more complicated reaction than, Than. Than she did. But I think it's because Lori and I trust each other so, so deeply enough to disagree on some persnickety things without diminishing one another. And we decided to have the conversation out loud, and that's what we do. It's not a conversation about deciding whose autism is more legitimate. It's a conversation about whether we can have different realities honestly and preserve the dignity that comes from the entire spectrum, but be willing to ask the really important questions that might be uncomfortable, and we don't shy away from that. So, Lori, you're the best. Thanks for being here today.
• 1:25
  Speaker B: Thanks for having me. I love being on your podcast. I. I think it's a wonderful platform, I think coming on to talk about this specifically because I think that I think a lot of people think and worry and have these conversations either, you know, behind closed bedroom doors, you know, so to speak, but it's. It's okay to have them out loud. That's where change will happen. So. So I'm hoping that this does that and gets a lot of people thinking differently and also communicating honestly with no judgment.
• 1:56
  Speaker A: Yeah. So without giving air to, like, the author or anything, there was a post, and we don't even have to give that air. But what was the biggest sticking point for you? That you were just like, oh, man, like, here we go. I have to, I have to put my name in the ring to just comment on this. Like, what was.
• 2:12
  Speaker B: Yeah, I, I was just overwhelmingly. And I. Because I don't tend to put out content like that. I'm not one who's going to, you know, want to get into debate with. With anyone. Right. My platform is to talk about the opposite. Right. I'm here to talk about how to regulate your nervous system and how to co. Regulate and make sure that your nervous system is as grounded as it can be so that the person that you're looking to, that's, you know, relying on your nervous system. Right. Our autistic children in this case. So something like this only, you know, usually just gets me dysregulated.
• 2:48
  Speaker A: Right.
• 2:49
  Speaker B: I was from head to toe, just like, how could something like this even be said in the way that it was? And I thought it would give, and it did, and people commented, and I was happy to hear and open to both sides of the. The conversation, and as long as it's done respectfully. And that's also another reason why I was like, yeah, Sarah, let's talk about this. It's. It's okay to talk about. Just do it in a way that's respectful and kind to one another and everyone's position. Right. We're not trying to measure whose heart is harder. We. We. We fiercely love our children wherever they land on the spectrum. But I, you know, there. There is some conversation around, you know, profound to, you know, where. Where it needs to land. So that was. That was my overall overarching feeling when I post Saturday morning.
• 3:38
  Speaker A: Yeah. I mean, and I think two things.
• 3:39
  Speaker B: One, what was yours?
• 3:41
  Speaker A: Well, I think. Yeah, I mean, I. I guess my thought was, is that I get, like, a daily briefing every day on, like, what the autism news is going on, you know, around the country. So two things. One, I feel like in general, the post, I mean, they. They want to do this. This is exactly. They are. They are. They are so happy that we are doing this right now. Right. Like, that's what the post is meant to do. And so for me, it stems from that. Like, that, like, they. And then I think about, what's the ground underneath this? Like, who's the author and how is this elevating their career or who they're bringing in? So I'm trying. I tend to look up, like, okay, move the topic aside. Who's underneath this that's stirring the pot and using the New York Post as their platform. That was my number one thing.
• 4:22
  Speaker B: Yeah. And look, we talk publicly about autism, so that gives us a responsibility. And. And. Exactly.
• 4:27
  Speaker A: Exactly. Exactly. I think the. The thing that was complex for me is that I have. Have gotten to the point where I do believe the autism spectrum needs to be split. I think that it has got. It has gotten so broad that the. The. The pres. The presentation of Liberty versus Milly and Mac simply is like saying that someone has, like, lymphoma and the other one has, like, a glioblastoma. Like, it's just it's so different in a. In. In a diagnostic way. And I don't mean to sound simplified in that. Like I. Cause I, I agree with you like what your management is of autism spectrum disorder for your children and my and mine are so different. And I think that that in and of itself should give the medical community reason to separate it. I don't think we should even be having this conversation. I think there's some overlapping things like you know, in psych psychiatry that there's a lot of diagnoses that sit really close, nestled close to each other and have some overlapping traits. That's how I feel about the different levels of autism. But I don't. But the, but the whole thing that we're all going to be on the spectrum. I have a different feeling on that. And I probably aligns exactly with you.
• 5:38
  Speaker B: Yeah, it aligns exactly with me. And, and I think that. But. And I agree with you. I think that there, it should. There is a. There is a dramatic difference. I'm doing it from the lens of. And why I would also push and agree with you on that is not so much because your heart is harder than my heart, but because the services and how things are going to be allocated things that. Resources that are needed. Right. I want that to be measured accordingly and properly as it relates to the needs of each family. And the only way that that's going to be done is if there is a distinction between the levels.
• 6:17
  Speaker A: Yeah. And that's like the distinction. You know, the spectrum doesn't account for like this heterogeneity and that's. I think those of us living this life where our child is on that broad spectrum right now. We just, we both know like, we both know that the subtype in this is like not the same thing or it is it just the.
• 6:38
  Speaker B: The.
• 6:39
  Speaker A: For me, when I think about how the dysregulation point is like absolutely a blanketed symptom or a behavior. You know, behavior as part. But it shouldn't be an ex. Just like the behaviors, the meltdowns, the nervous system regulation. That shouldn't be the one thing that categorizes us for like it has to. It has to be more precise than that. Like we just need the prec. Of that spectrum so that we treat and properly mother, like literally just mother and do the work that you are so beautifully putting out there for the child that you are raising. You know, my children's autism and their co occurring, you know, other diagnoses create a beautiful child that is going to need 247 care. That doesn't mean that yours might not 2. It's just that your kind of care is going to look wildly different. So that's a different, that's a different. In my mind, that's a different kind of diagnosis.
• 7:32
  Speaker B: I, I, I completely agree. I do. Um, and you know, it's why I, I try to stay in the content that I create less about my children, my two children's, you know, diagnosis and their autism. I, I almost sometimes say while it's it. Autism is the lens in which I learned the technique. I talk about.
• 7:54
  Speaker A: Yes.
• 7:55
  Speaker B: That is just, that is my story on, on how I know what I know and why it's so important to teach it. But I almost for a very long time don't talk about autism at all.
• 8:06
  Speaker A: It's about right.
• 8:07
  Speaker B: Regulation nervous system co regulation dysregulation and what's happening in the body. There's. And mine outside of their diagnosis.
• 8:18
  Speaker A: Yeah. Which I think is why it should. That's why the, that's the only beautiful part of the spectrum here is that we, we were drawn together because of something was probably too wide. Wasn't that funny? Like, it's like this, it's like this. I think I, I think that's just like that diagnostic expansion has brought this conversation there. But in now that we have the broadening of it, we do have to be again like discerning of those that talk about it. You and I. I'm not a physician. You're not a physician or clinician yet. You know, we do do our own research, but we don't have the. What's the word I'm looking for like that, that TikTok Fluencer. You know, I'm autistic too. And I found this out and like I need XYZ in the adaptation of this. And then it becomes this, like what I feel is this recognition of autism in a way that, that's not what you and I are discussing at all.
• 9:06
  Speaker B: No.
• 9:07
  Speaker A: And we, and we have different children.
• 9:09
  Speaker B: I remember what, what I heard. I, I mean I, I think I, my head must have whipped around it was that you had two children on the spectrum. I think you and I've heard you say it a few times. You know, hold my, it was on my bingo car. Hold my beer twice or what is the line?
• 9:23
  Speaker A: Yeah, no, I literally, I'm, I'm like God was like, you know, hold my beer and like hold it again. Like exactly. Never in a million years.
• 9:30
  Speaker B: And when I heard that I again so different than you know, our children. But I, I, that for me you were immediately. We were the same person totally because we, we love our kids fiercely. We were in this same category. Right. Miles apart, but we were in the same. And, and that, and I recommend, you know, if you are in a, in an environment or a group or a community where you're only just talking to similar and liked individuals, which is important for so many reasons, but it is also so important to open up and widen your, you know, your, your community to different lenses and approaches. And that's what you and I for now years have been able to do and bounce things off of one another and collaborate on various things. And I think that that's, that's where the community, you know, can get, can get stronger. But I agree about where we are right now with the, with the diet that takes.
• 10:32
  Speaker A: But that's, you know, again, why you're like something central to your platform allows for both of us to do this side by side. Is that my nervous system regulation and yours is the reason why we're able to even talk and have these bridges in the diagnosis. And I think I'm preaching, probably anyone that's listening here is that like we are central to our children's nervous systems. We are central to how well they are going to do and, and at the same time they are still full, individualized human beings. And that's like the pain of motherhood across the board is like we can do as much as we can to be the central. Tethering their ability to become the best version of themselves. And at the same time they are still a hundred percent separate physically. Right. And I think that the lens, this is what I love. I, I think, and this is maybe what the article touches on is that I, I believe and I actually, I actually did do this and I did not receive it. I, I went through at the SAC center in New York City to, to see my own neurodiversity, you know, a few years ago and, and received an ADHD diagnosis which was confirmed. I did not receive an. I went through the autism evaluation process too. And they were like, you are not autistic. And I thought to myself, I probably could have answered a few things differently that have happened that might have pushed me onto that. And I wonder about that as someone because I, and you, you use the words. It's, it's the diagnosis that gives you a lens and like the, the, the, the map. And if you use a map to help yourself regulate, there's like, there's no downside to that to me, except if you start using that as like a white flag for every situation.
• 12:08
  Speaker B: Yeah, I mean, I think that was perfectly said and I think that there's some value to, you know, to asking yourself the hard questions, whether it's going through that. But yeah, absolutely. I, I think, you know, because at the end of the day, you want to be able to, you know, answer them honestly. Right. So in order to answer things or have an honest conversation like we are, or a difficult conversation, you have to kind of be honest with yourself because if not, you're just, you're just looking through the lens of this is hard or you're competing to be in the most hard situation. Right. What, whatever it is. So I think, I think that that's pretty interesting, Sarah.
• 12:45
  Speaker A: I wonder if that I, I, I wonder what your take is on that. Is that when, when content creators or people that are sharing like you and I do on social media, are they themselves not realizing how it could have a, have a potentially negative effect because if they can't pull back and understand their own agency start losing the more marginalized. And that's always become something that I wrestle with a lot and why I really think that the spectrum needs to be split. I mean, I, I sat at a point even a year ago, I was like, I'm not sure. Like, I feel like this gives so much recognition to something that's so important in this country. And at the same time, you know, I just always think about the agency that, that, that, that those that are on the higher end of the spectrum that have support and can ask for support. I know that the same life demands still so much from everyone else that, that is in that support network. So how do we, how do we divide it? While also saying this still causes an immense amount of high needs, but those needs don't mirror what my children's needs are. I don't know.
• 13:49
  Speaker B: I don't know. I don't know either. I mean, I don't, I don't know. I, I, I think about it often too, and that's probably one of the other reasons I posted that article. Just the more we ask these questions, I think the more we'll find out the answers.
• 14:04
  Speaker A: What, what do you think is certainly
• 14:06
  Speaker B: open to, I'm, I'm certainly open to, you know, something changing, something being different.
• 14:11
  Speaker A: I, and again, like, you know, I've, I've gone down to some of these meetings at the NIH of this, you know, IAC committee. I'm realizing more and more how I don't want Anything to do with the government level. I mean, because the amount of energy, like you and I have a lot of energy used every day in mothering our children. And like the amount of energy that I saw poured into something and then to just watch it just need even more and turn even more, I'm like, this is insane. So sometimes I think the conversations around, you know, funding for autism or funding for neurodiversity or funding for this and that I'm like, after experiencing it down in dc, I'm like, good luck. I don't. This is not the conversation we should be having. Like, go back to your community and affect one person and then another one person. Another one person. Because there I've never realized the exhaustive nature of the laws around.
• 15:01
  Speaker B: Yeah.
• 15:01
  Speaker A: Funding.
• 15:02
  Speaker B: It's why I create the content that I do for free to explain and to walk people through in real life how to. What you're looking at, what you're probably seeing, what you're probably experiencing, you know, options and ways through what's really, you know, that's why I try to break it down. Right.
• 15:19
  Speaker A: What about you? We, before we press record, we had sent some questions back and forth and I love the one that you said, which was what, maybe something that you don't know about my family that you'd want to share with me and vice versa. I think that'd be a great thing to answer. So like, what is something that, that I might not understand as clearly about your day to day with specifically Liberty that I have just not nearly as much of a understanding or acknowledgement of.
• 15:49
  Speaker B: I think, I think just to answer it quickly, I think the, the need for. Her need for a fierce control, this, this demand avoidance or this PDA kind of cleanse that, that we're in. It all comes back to agency, which you were talking about earlier. Right. So the need for her to feel in control, it is so hyper intense at the moment. And we're at. Because of her age and where we are and just seven years old. And that is a typical time where, you know, typical child would be pushing the envelope and trying, you know, just testing waters where every parent can, you know, tell the story. This is amplified for us by so much. So it's a lot of validating her feelings. Thank you for telling me how you feel. Thank you for showing me you're upset. Thank you for saying you don't want to take a bath. I mean, we were trained, we were parented. You know, my word is, is good. Up the stairs, in the car, socks on, one More bite. You have to. And I know again, when we talk about your struggles and I'm, I'm excited to hear your, I mean, excited to hear yours. When I say excited to put it into perspective, it's, it's so different. But that is a struggle. And I think that it's why I talk about it so much. Because if you are like a family like mine and a child like my children on the spectrum, you're likely struggling and will struggle for a really long time. Then you get into behavioral issues, then there is a whole other host of, you know, issues. So I think that's where you might not know. That's a day to day. That's a minute to minute thing.
• 17:29
  Speaker A: That's a minute to minute thing.
• 17:30
  Speaker B: That's a minute to minute thing. I mean, how many times do you give your child a direction, a redirection?
• 17:36
  Speaker A: Yeah.
• 17:37
  Speaker B: Yeah.
• 17:37
  Speaker A: I mean, I've never, you know. Yeah. I mean to your point, it's like it's, it's incessant. But the incessant nature presents so differently because you're how, how you are having to positively reinforce or react or lead. Honestly, on a macro level could, I guess if someone was looking from like a 30, 30,000ft view and we're like, oh, that mom has to. Is constantly there, like at a pivoting. That's the only way it, it lines up. Everything else there's the way in which what I'm saying, the activity for what I'm saying it for is so different.
• 18:11
  Speaker B: Yeah. Yeah. What about you? What's, what's something. I don't know.
• 18:14
  Speaker A: Like my children can barely get to the bath without being led by an adult. Like there's no directive that I can give them. And even multiple times, like, even with transitions, even with something that they're very used to, like the evening routine. There's no, like I'm in my bedroom. Hey, Milk.
• 18:35
  Speaker B: Say it one time and it go. Yeah.
• 18:37
  Speaker A: Or even, or even prepping, like from afar or walking in. Cause their bedrooms are nearby and being like, hey guys, we've got about 15 minutes, you know, hey guys, five more minutes till bath time. And doing that they're still. They completely have to be assisted to get even to the bathroom. And then it's pants off. Tapping of the le. There's so much physical reminding, regulation hand over hand. I mean it never, I mean it truly never ends. And like the, and then the growth, which I love to see, is that like, yeah, Milly can take off her pants and her socks and everything. And if I Turn around and grab, oh, I need a loofah from my bathroom. She's in the tub with her T shirt on and she has no idea. She, she's, she has, she didn't do anything. There's nothing. And then I guess essentially. Is there anything wrong with that? No. But she's 11 and we have been working on bath time for 11 years. So there's this, like, you've got to be. Sometimes my thing is, like, you have got to be kidding me. Like, I turned around for literally one second to grab a washcloth and she is in the tub with a T shirt on. And there's no acknowledgement at all that maybe we, maybe I forgot a step or, you know, and then the getting out and the control things, like all the letters have to be put back, all the foam letters have to be put back into the tub. You know, if one falls out and she sees it start over again. She's not a small girl anymore. She's, you know, well around a hundred pounds and mama's staying about the same size. So that to me has become, you know, the reality that is not going away, that the consistency of my presence to get them to even their hygienic care is still at max capacity.
• 20:20
  Speaker B: Yeah.
• 20:21
  Speaker A: And that becomes one of those things where you, your mind can't believe, like your adult grown woman mind cannot believe that your children of a certain age can't literally do not have the capacity or the ability or neurological functioning to do something that seems so beautifully normal and they just can't do it.
• 20:45
  Speaker B: Right.
• 20:46
  Speaker A: And it's not to say they won't one day, but like, the, the conditioning of my mind of, like, what they look like and how big they're getting to, what they are still limited in capacity to do has this like, grief and then societal conditioning, like, not in me always.
• 21:02
  Speaker B: Yeah, always.
• 21:04
  Speaker A: So that's, yeah.
• 21:05
  Speaker B: Sharing. Those are so important for, like. And I know all of those things. Right. But to hear them again, and that's what I don't think we do enough of. So I, I mean, I think that's why we both were quick to jump on this and say, let's talk about this.
• 21:23
  Speaker A: Yeah.
• 21:23
  Speaker B: And I hope more people talk about it and, and share because I think that that's how we can help each other. So.
• 21:30
  Speaker A: Yeah. And I, I, I want to, like, this might be a good way to, I guess, really, I guess the word bridge is coming up a lot. But, like, is there real tension here? I just want your opinion on this. Is there real tension between autism Parents, or are we fighting over attention and resources because the systems have like supported all of us are so inadequate. Like, is it between us parents that not, not you and I specifically, but is it between parental advocates or are we fighting over the attention?
• 22:00
  Speaker B: I think it's both. Yeah, I think, I think, I think you are, you're, you know, you and I are special. That we can not only share it and not have any resentment. Right. So resentment, I think there's, there's a very, very strong resentment through.
• 22:17
  Speaker A: Yeah.
• 22:17
  Speaker B: Various pockets of, of profound autism. You know, that is understandable.
• 22:23
  Speaker A: But I just think it all, like I was sharing with you that story before we press record. Like there's, every time I hear that though, or I get the polarized, like, I don't want to say DM attack, but like the person that will say, like, how dare you give, you know, airtime on the podcast or support or prom, you know, a higher functioning autistic, you know, content creator. I, I just so vehemently put my foot down because that's all like figures in this world. That's not the ground at all. That's. I, I want to talk about the ground. I want to talk about, I want to talk about, you know, what's actually going on between all this noise. Right.
• 22:58
  Speaker B: Yeah, no, I, I, I agree. I get it pretty regularly too.
• 23:03
  Speaker A: Yeah.
• 23:04
  Speaker B: So, and I don't, I mean, I just don't, I don't have any space for it. You know, we, everyone is welcome every situation. There are times earlier on, you know, for, you know, more high functioning that just seem as intense as 11 years later in the bath that you do. Exactly. You felt it at some point. It doesn't make it less real. You know, this isn't a contest. This isn't a competition on whose heart is harder.
• 23:31
  Speaker A: Nope. And I think, you know, they, they talked about this in the article and I, I, I will say I have thought about this and I, I, I might have even written about this, that if we don't separate the spectrum, if we don't make more clear diagnoses, that's where I think the article is trying to like clickbait that, that tried to clickbait us on this. Is that like, is that, you know, at some point, you know, the kid on the street that just plays Tetris but becomes like a, you know, bajillionaire in the tech world one day, you know, is he autistic or not? Like that. That's what we, that's what, I'm sorry, why are we even Talking about that. But that is what the figure like people, publications like this want to keep that they want us to jar. They don't want us to have conversations like this at all. They don't. But that comes from what I think, you know, your most beautiful part of teaching is the, is the regulation piece. They don't want us to be regulated about our lives and what we are actually living. They want us to be at odds with each other about what our realities are. And I won't do that.
• 24:27
  Speaker B: I won't do it either. So I mean, for that we're.
• 24:31
  Speaker A: Yeah, exactly.
• 24:32
  Speaker B: We're in this together. You know, I'm getting my wagon to your train and I learned so much from you and I learned how to help, you know, higher functioning families like, you know, that are similar to mine so much from the conversations that we have on and where they can support in other, in other, in other areas. So I'm, I got no problem with, you know, us bridging the gap between profound autism and higher functioning autism as long as we're, as long as we're doing it with kindness. And again, you know that this is, this is your. Yeah, I think it's not harder.
• 25:05
  Speaker A: Yes, it's not. And I think that I hope maybe this conversation, if we were to give a call to action or any sort of charge to anyone listening, make it a point to have a conversation like this, because it does. Again, you know what? When you talk about nervous system regulation, talking to another person that is on the opposite side of the spectrum and realizing that that is we are meant to, to be communal. We are meant to be in community with each other. And just because the diagnosis might not be what it, what I believe it should be or what you believe it should be or it's gotten too broad, that doesn't take away the community that was formed from a very wide spectrum. So I think, you know, Lori, thank you for being willing to have such a brave conversation and especially ones that are useful and in this very wild time in our lives, all the time,
• 25:50
  Speaker B: anytime I, you know, I, I will talk to you and, and to anybody else who's like us, who, you know, will, will gain from having these conversations. So.
• 25:59
  Speaker A: Yeah. And naming those differences does not diminish anyone else's reality, but listen and listen more and then ask another question and listen again because you might start to integrate someone else's reality simply as a way to not back away from your own and your own truth about it. And so, Lori, we'll make sure on this episode to post everything, too, about your content with parenting and everyday autism essentials. And as always, being so willing and to stay curious. Because you know, that's one of my favorite words, stay curious even when things become uncomfortable.
• 26:31
  Speaker B: Absolutely. Thanks, Sarah.
• 26:32
  Speaker A: All right, well, until next time, here everyone on the Inchtons podcast.