Episode Transcript
[00:00:01] Speaker A: Hey everyone. Welcome back to the latest episode of the Instance podcast.
Today's guest brings such a rare and deeply powerful combination of what I like to say is intellectual rigor, deeply lived experience like my own, and a deep moral clarity when it comes to this autism conversation. Christina Gaudio is a legal, policy and advocacy fellow. There she is at the National Council on Severe Autism.
She's currently pursuing her JD and Master of Public Policy at Vanderbilt after graduating from University of Chicago with degrees in both mathematics and economics. But what I love so much about Christina's voice and it is especially important, is not just her academic nor her professional path, it's her deeply personal one. Christina is a sister of an autistic individual and really works alongside the intersection of my own work, which is policy and reality. Christina, I love that your focus is clear.
It's evidence based policies to actually improve the lives of those on the more severe end of the spectrum, but also when it comes to just the reform and understanding housing, access, long term care and what meaningful support looks like. So, Christina Gaudio, thank you so much for being here on the insurance podcast.
[00:01:19] Speaker B: Thank you so much for having me. It's great to be here.
[00:01:22] Speaker A: So you jumped into working with National Council on Severe Autism because you wrote an incredibly powerful article kind of calling out that your generation of Gen Z was sort of unable to sit in these deeply complex conversations and sit in nuance and really listen when it comes to neurodiversity. Maybe we can start there and talk to us about that article.
[00:01:50] Speaker B: No, I think, I think that's a great place to start. So my brother is actually level two autistic. So I'm at the National Council on Severe Autism which focuses on law and policy for people with very severe forms of autism. So we're talking like level three, but my brother and my lived experience is with someone who is level two. So he's going to need, he's squarely in the middle, I like to say, like he's kind of borderline intellectual disability. He's going to need support for his whole life. You know, he's always going to need someone. He's not going to have a, probably a traditional job, but so my lived experience is not with someone with level three. But I've ended up in this space. And the reason that I got into this space was because I felt like the conversation around autism in public discourse had become extremely intellectually dishonest. So when I was in college, I was in this club for student, University of Chicago students wanting to help people that had disabilities.
And I noticed there was all this talk about neurodiversity and neurodiversity. And we use the word neurodiversity now instead of the word special needs. And I was like, okay, well, let me look into like the neurodiversity movement. And the neurodiversity movement corrected some gaps that needed to be corrected. Right. Historically, autism has been portrayed as very stigmatized. And you know, the deeper you go into history, the more dehumanizing it becomes. But when I was in college, I kind of was like, okay, great that we've moved on from that. But I kind of feel like there's been this overcorrection because I keep seeing articles in the media that's like, autism is a gift and autism is just a difference. And like in my life, in my lived experience with my level two brother, like, that's not true.
So I was like, okay, this feels kind of just like insulting. And once you see this gap, you can't see it. So I started like digging deeper and I was like, if that's not true for him and he's level two, what about those with like clinically defined per the dsm, higher support needs? So I started looking at the profound autism space and I saw this degree of erasure of need in law and policy and public portrayal that was just completely unacceptable for me. So that's where I decided to take the direction of this, of my career to filling and fixing that gap.
[00:03:52] Speaker A: It's phenomenal work. And I think the position that you sit in, again, not only elevates your credibility, but what something I like to call it all the time is you have to go inside the home to really see what this looks like. Because something that I speak on about a lot is this division of like interaction over isolation. Right? I'm someone that, and I know a lot of other mothers too, we attempt as much as we can to interact with the community as much as we can to get out inside the world. It takes 30,000 times to even potentially go on a trip when it comes to energy levels and at the same time, what it looks like outside the home and what is a live day to day inside. Because as we all know, typical child or not, your children bring everything into their safest space. And when their behaviors are the toughest, everything is in the safest space. And they will exhibit those when they are most safe, which is generally in the home. So I think that what you're calling out is we need to get the eyes on what that actually looks like from the mothers and caregivers, siblings, and speak to that not as a reason to exploit, but as a reason to expose the depth of the truth. Would, would you agree with that?
[00:05:05] Speaker B: I would 100% agree with that. And I think we cannot speak out of both corners of our mouths here. We can't on one hand say, like, autism is a spectrum and all autistic people are different, which I, I've got some problems with that framing, which we, I'm sure we'll get into. But we can't say that on one corner of our mouth and then on the other corner be like, know only autistic people can control this conversation. Because the fact is the spectrum, which really is that huge, as we're saying, includes people who cannot use their own vocal cords, who cannot sit at a table in D.C. and like, advocate for policy. So we have to have space for mothers, for siblings, for fathers, for grandparents, because a lot of these marriages fall apart. A lot of kids are in care of the grandparents, direct support professionals. Right. All of these people that are like, on the front lines of supporting a person with autism who cannot really fully help themself or who has very significant needs and cannot advocate for themselves, I should say those people need to be part of this conversation, and that conversation needs to be shared.
[00:06:02] Speaker A: Well, I think, you know, you're striking on something. You know, I love the work of like, basically the, the grandfather of public relations, Marshall McLuhan. You know, his whole theory was like, the medium is the message, right? And we live in a world right now where this social media AI being online. That is the medium of how messaging and how our culture is shaped and so deeply, unconsciously. Right? So in the space that we're talking about in autism, what I hear you saying and what I want to echo is that these, the loudest narratives, the things that are so prominent, like on social media, online, TikTok, Instagram, Facebook, whatever, whatever platform any generation uses, the loudest narratives often become, often come from the least impacted experiences. So what I tend to say is those that have higher functioning, lower support needs, autism, have the ability to benefit from the medium that we live in right now.
And so that takes, that takes a lot of depth and ability to hold complex thought.
And what that actually means as a whole for structural support, the system to reform itself. Because unfortunately, the least impacted have a sounding board that is a megaphone right now.
And the families that don't have that ability as much do, unfortunately, are getting pushed off to the more erasure side of things, not because it's not powerful, it's just that the bandwidth in the medium doesn't support that story.
[00:07:35] Speaker B: Absolutely. And I think there's multiple things going on. I think for profound autism families, there's so much, so many barriers that come within the home. Right. Every single day is a challenge. And it's particularly difficult because not only can the individuals not speak up for themselves, the parents are so busy that like, to get, like you said, to get the parents to come out and speak is like an infrastructure, a luxury that a lot of them do not have because we don't have an infrastructure for autism care.
So the microphone is very hard for you to grab and to access. So we've got that access barrier to representation now. I think it is compounded by the direction that all of this has gone in the mainstream. And so like, I know we've, we've had a little, a little bit of talking about the words awareness and acceptance.
And so I think we both agree with the attention behind those words. Right. Promoting kindness, inclusion, basic respect, supports needed to flourish in life, is incredibly important, especially given the history of this community. Right. But we have to fight stigma without rewriting facts. And that's for me, where it starts to feel incomplete is when those values stop at the surface. Because if we want to be able to support people, we have to be honest about what people actually.
And so when we actually get into the weeds and we start talking about differences in support needs and we start stratifying what targeted care actually looks like and how to allocate resources, people flip out and they get uncomfortable. Right.
[00:09:06] Speaker A: And that's because they're, because the public narrative centers, identity and empowerment. If you are an identity based need, you are going to strike at we, you and I, people of our cut from the same cloth of us.
We are going to hit nerves that hit identity politics, not support based politics. And practically that affects policy.
So if a need isn't accurately understood, the support won't either. But that's gonna really piss off the people that identify as the need being equal.
[00:09:41] Speaker B: Well, yes. Right. So we get into the weeds and we start then people, people, we, we start having uncomfortable conversations and so then we start hearing claims almost like backpedaling that it's like, oh, well actually all autism is just autism or there's no more or less severe. There's only difference that for me is like not acceptance and not aware awareness. For one. It's clinically untrue. Autism is stratified in the DSM 5 by differences in functional impact and support needs. And here's the key for me, right? Those differences are crucial for targeted support. Targeted support necessarily requires recognition of those differences. And it is not because one person is more valuable than another. It's not because this is a competition. It's not because this is a zero sum game where like talking about severe people cancels out how functioning people. It's because different people require fundamentally different levels of care. And right now, not only is the microphone and controlled by those kind of more level one voices, but if we look at the infrastructure about how Medicaid is set up and how autism support is set up, it is less expensive and less complicated to provide intermittent situational supports, which again are valid, right. For lower support needs, level one or level two that we're talking, right? Those supports are less expensive and less complex and easier to build an infrastructure for than what the Level 3 group needs. In fact, the Level 3 infrastructure is pretty much absent. Drawing attention to that is not hurting, is not taking away from what's already there. We are trying to build something up. That is the point here. It's like my, my boyfriend is in med school and he wants to be a oncologist and right, We've talked about this. Like you take two cancer patients, right? One has stage one cancer and one has stage four cancer. Are we going to look at them in the eye and really be like, all cancer is cancer?
[00:11:30] Speaker A: Yeah.
[00:11:30] Speaker B: No, no. I mean, they both have the same right to life. They've got the same right to life. But the level, the stage one treatment is nine times out of ten going to be a lot less complicated than someone who's got a really like progressed severe form of the condition.
[00:11:46] Speaker A: Rare, terminal. Yeah, I think, you know, I made a similar analogy in an article recently because a veteran reached out to me and said, you know, I lost three limbs in Afghanistan.
When the, when the lost appendage society approaches me and the majority, 90% of them lost a pinky, we are not in the same reality of lost appendage club. And it doesn't mean that it's wrong. Like, Godspeed, like, yeah, the pinky really affects how you move around, right? But that is not the same loss appendage reality that I live as a, as a combat victim with three limbs lost.
[00:12:22] Speaker B: The person that's lost three limbs is really going to need like an expensive wheelchair and all sorts of different care. The person that's lost a pinky, they deserve to get their pinky back and like, you know, a sensitivity and like, you know, whatever they may need. It's going to be harder to help the person that doesn't even have an arm. Like, you know, and that's, it's really, really frustrating. And I think that, for me, is a very big core of this discourse problem.
I know we kind of have, like, ping ponged a bit back on this, but I see the discourse problem happening in three pillars. There's the overcorrection problem that we've talked about, where the media is now way too comfortable framing autism as like a mere difference, sometimes even a gift. So you'll see these articles like, oh, it's nothing to cure. It's just a different way of being. And that's like an insult for this population when we're talking about people with level 3 autism. People who cannot speak, cannot live independently, require constant care. Like, okay, we agree with the, with the premise this is a difference, but the word for this type of difference is severe disability.
[00:13:33] Speaker A: Yeah, exactly.
[00:13:35] Speaker B: Policy is built on a narrative that refuses to acknowledge this and refuses to engage any deeper than that premise. We as individuals, and frankly, any individual who's like, oh, my God, I, I, you know, I need help, is gonna get left behind.
[00:13:49] Speaker A: Well, right, because families like mine, you know, my kids are 11 and 8, and on the severe end, we start to feel like when we tell the truth, we're doing something wrong. Right? Because when we, when we describe reality, we're actually just describing our lives.
There's no there. But that. But that's. That friction point that you're describing here is that that that difference hits something and it strikes some sort of nervous system, like, nerve, literally, like in others that don't want to even touch that severe end. Would that, would you say that that's true in the discourse?
[00:14:26] Speaker B: I think that's absolutely true. And I think as a general rule, right. Everyone wants to do the right thing or at least be perceived as saying the right thing, especially in the social media age. Right? And I wrote, I wrote about this in my piece. We all want to be on the correct side of every hot but.
And if not, you better, like, either shut your mouth or prepare to, like, you know, be totally crucified. But so with that intention, public narratives will promote uplifting stories. And that's great until it crosses a line into obscuring the truth. Then families like yours come out and they're heated and they're emotional because they've been on a Medicaid waiver list for five years and they can't get care and they can't get all these things that they need and they're like, hang on, whoa. Like, that is not true in my family.
And then they fake. They face backlash because they're supposedly being too negative. So in effect, they're cornered into silence by public mouthpieces and public narratives that purport to be like, helping them and spreading positivity and doing the right thing, but in reality are working against us. That's, I think, what it feels like a lot of the time.
[00:15:28] Speaker A: It does it. Well, it doesn't. Again, you know, I think what this entire conversation and the entire autism community, what, what we're talking about now, what it exposes is that there is a real discomfort in these kind of conversations and the capacity for people to have these conversations makes. And again, this is the world we live in right now in 2026. People start to set boundaries or say, like, like, like, I'm just uncomfortable with hearing about this or, like, this is so uncomfortable for me. Well, uncomfortable is not unsafe. But if your nervous system, like you're saying, like, reacts so boldly and is and is sharp or goes 0 to 100, that actually says less about your own experience and more about what your nervous system and what your identity, how your identity is shaped through a diagnosis that you have and. Or those that are more on the higher end of the spectrum that I think that it's starting to call out the categories of deeply, like, of a deep category of the inability to sit in the uncomfortable truth that families on the farthest end of the spectrum have. And I think that when we hear it and when true, you know, other autistic individuals hear that, they start to feel like, well, so I don't count now. And we're. And I was talking to their dad and saying, that's not at all what I'm saying.
I'm just saying that if our experience, that is the truth and if you follow me around with cameras, you know, you're going to be really uncomfortable watching what goes down in my household 24 7.
That doesn't mean it's unsafe to you to absorb. But why do you think that is? Like, why do you think that, that, that, that, that, that uncomfortable disconnect around this discourse? Why is the realities so challenged by those that have maybe lesser support needs?
[00:17:14] Speaker B: I think people are treating this like it's a zero sum problem because when you try to stratify by need and you try to preserve the integrity, we have different support levels.
You'll hear claims like we talked about, where people are like, whoa, whoa, whoa. It's just a difference. It's Just a difference, right? There's more to it than that.
As if recognizing higher support needs somehow invalidates those with lower support needs or vice versa. But I think the bottom line is that we're failing to recognize is that targeted language does not cancel out the validity of different needs. It promotes it and it promotes the supports and services that different needs require. So lower support needs are val and those individuals absolutely should have access to the resources and accommodations that they need. And because you know, when you're, again, when you're in a public facing role talking about this, like people like to invent motives so people will say like, oh well, you just high functioning people or I wrote a piece about the Barbie and people were like, you just hate autistic women. I mean, before I started at ncsa, I was, I don't know, let me just put this on record. Okay.
[00:18:18] Speaker A: Before I started the article too. So yes, I'm with you.
[00:18:22] Speaker B: Before I started at ncsa, I was an employment coach for level one autistic women.
And that, you know, supports for that population, for the level 1 population are not where they need to be and they're not perfect, but the infrastructure is there and we're working on improving that.
What is not there is the support for the lower support needs. So I have experience working in policy like from the level one to level two to the level three. And when we talk about level three, it is not invalidating the support needs of level one. Those needs are valid. Those individuals absolutely should have access to the accommodations that they need. And the same is true equally so for individuals with higher support needs. So there's the zero sum problem going on on top of the overcorrection problem that we kind of segued this conversation with. And I think when you have those two things and people are, you know, we've overcorrected and then we're treating it like it's zero sum anytime we try to point out new ones, if we stop pointing out nuance, if we kind of fall into the thing of like, oh no, it's just an identity or it's just autism or neurotype and we fail to engage beyond that, then we get the appropriation problem, which is we're pretending that there's no pathology here. Not only are we now undermining targeted care, we're opening the door for those with it's autism Spectrum disorder.
[00:19:44] Speaker A: Like the DSM has the word disorder on it. Yet there's some reason why people don't want to say that. They just want to call it Autism. It's Autism spectrum disorder. It's a disorder of the brain.
[00:19:57] Speaker B: Well, yeah, it sounds inclusive, it sounds correct, it sounds kind.
But dignity does not require, I would say like a denial of reality. Correct. In fact, I think the most stigmatizing thing that you can do is fail to acknowledge this lived experience, honestly. Because being non verbal, right. That's a very specific lived experience. It deserves respect.
It's not something that you can switch in and out of for the love of God. Like you can't, you can't go non verbal. Right. It's not, you know, See, I'm sure, you know, there are people who can talk, but sometimes they feel too anxious to do so or they need extra support to do so. Right. On the level one end of the spectrum, sure, that's very difficult, but that is not the same as being non verbal.
And to say, I'm going non verbal. I can't name any other condition where I would say that and it would be socially acceptable. I can't go deaf. Right, right, right.
Because this population cannot push back. We have. They're vulnerable to appropriation. So once again, they've been washed out. So do you think.
[00:21:06] Speaker A: But there's different core questions here. Like this is, and I think that we're circling this and I want to get really, really specific. Do you think that there's just two different core questions that are being asked and one group is asking, like, how do we protect, like you use your words, like dignity and identity.
And the other one is asking, how do we secure, how do we survive and secure appropriate care?
[00:21:31] Speaker B: Absolutely. And I think they're both legitimate.
[00:21:34] Speaker A: They're, that's the thing is they're both such legitimate questions.
[00:21:37] Speaker B: They're both legitimate and both groups are asking for what is important to them. Right. I think the questions being asked and the differences. Right. How do I preserve my identity and like, you know, as an autistic person versus the autistic person who cannot speak for themselves, cannot conceptualize an identity, at least not outwardly, to be able to sit at a table and like say that. The fact that we have to ask those two different questions shows just the breadth of the spectrum. The spectrum is so wide that for one group it's like services for 247 care. And yeah, they're gonna need that for life. To prevent self injurious behavior. They're gonna, you know, I'm sure you're familiar with all the things that your kids need and people get uncomfortable when you talk about that. But that's the truth of that part of the spectrum that cannot speak for themselves. And then the other part is they're the ones who can control the microphone. And so they can say this is an identity or like, you know, have some pride to it, which again is valid and they're entitled to that. But we cannot have that dominating the whole conversation. And right now it is.
[00:22:39] Speaker A: Yeah, I mean I, I, I probably tend to use this phrase and again, it's not as a way to, to shock and awe yet when I think about someone who has a wonderful support network and has parents and caregivers as they go off to college or is able to be facilitated in helping to get a job through the work that you previously did. And I'm sitting here going, my 11 year old cannot wipe herself.
I'm exchanging her on the ground of her bedroom floor. I'm buying, you know, adult size pull ups as we go through puberty.
It sounds like I'm trying to be dramatic, I'm just naming the facts. And I always say like, you know, my platform is not to shine on me and my children, it's to be this mirror of I'm not unique. And so neither are the other, other individuals on the, on the lower support end of the spectrum. Yet if the realities on the far end make you go, oh God, is there maybe a part of those that have lower support needs autism feel a little bit guilty that they've made it such a stink over the supports that they have needed?
[00:23:45] Speaker B: Yeah. And I, I, I think with that a little self awareness would go a long way. So when they come out and they're like, we're talking for autistic people, they need to be very careful with what they're saying. So one statement that I have seen made from that end of the spectrum I won't name from where, right. Is that when other people speak for autistic people, the result is generally bad. So for the first thing, because I'm going into this space of law and policy, I'm like, have you heard of conservatorship? Because what about the people who cannot speak for themselves, who are extremely, extremely vulnerable to abuse, to all types of harm that you can think of and will never be able to testify on their own behalf.
The only way that they can get justice, the only way that they can have dignity is to have someone else advocating for them. So if that is not allowed, what,
[00:24:34] Speaker A: or if deem that that's not legally acceptable, which it, or if that's somehow,
[00:24:39] Speaker B: you know, you're treating it like it's some Sort of form of oppression that, oh, like someone else is speaking for me. If you take that away from that person, that is the only lifeline, that is the only voice that they have. And now you're pretending that you speak for autistic people. I mean, stay in your lane. You can say we speak for higher functioning people or something, but right now that self awareness is absent.
[00:24:59] Speaker A: So, so let's talk about that because I think that a lot of them, and again I just, in a broad sense I feel such deep empathy because I think a lot of individuals on the higher end of the higher functioning end of the spectrum truly grew up deeply misunderstood, shamed, underrepresented, under supported, bullied and treated like they were a problem to be solved. Right. And I think that when you have decades as an individual feeling like you did not receive the right help or trying to think like that you felt humiliated by maybe the way in which your autistic traits came through instead of making, instead of having the support to make your life more livable.
I think that the compounding nature of that somehow is playing in to the identity and it's, and it has a lot of shame and anger and ego attached to it that it's really hard to call out because all it does is exacerbate those tendencies.
So that's, I think where we're sitting, we're getting what is that revealing? What is that revealing about those that are so angry because they should be, they had, they had they lived something that they probably should have received a lot more tender loving care, yet it should not come at the expense of sitting and arguing so deeply that those that maybe are under conservatorship or guardianship or like my children, who do not, cannot speak at all or will not be able to. The caregivers that are speaking to the lived reality, why do you think that comes in such friction, in such collision with their own messages? Why do they have to say they shouldn't be speaking for children like mine or I shouldn't be speaking for children like mine?
[00:26:43] Speaker B: Well, I think there's definitely some fear there, right? And that's what's driving kind of the zero sum problem is because you speak for your children, then they all of a sudden assume that they're being put in a box and you're speaking for them and you're going to take away their voice to speak for themselves and they freak out. I think nobody is trying to do that to you.
[00:27:00] Speaker A: No one is.
[00:27:00] Speaker B: Nobody is trying to do that to the level one population. Everyone's listening. They've been heard, they've broken through, especially in recent years, politically. I mean, the, the neurodiversity and the woke movement dovetailed, and you know it. Neurodiversity has been heard. What I would add, though, is you had your experience. It is valid. You have a right to speak for what you want. The, the trajectory of your life and the. The way that you want it to be treated, the way that. That you want that to be right. You have a right to speak for that. But be careful not to repeat the same mistake with someone else. Autism is a huge spectrum, which is what. That. What those people like to acknowledge. Like it's a huge spectrum. It's a huge spectrum. It is huge on the other weight on the other end, too. It stretches in two directions.
So you can speak for your lived experience, but until you are accurately speaking for those who share a very, very different lived experience than you, the only correct thing is to have mothers and caregivers and conservators and siblings at the table speaking for those who cannot. Because right now, those needs are not being accurately portrayed in the conversation. So we cannot continue this cycle of the wrong people speaking for each other and people's needs not being hear. That's why targeted language is so important. Like we said before, targeted language stratification of need does not diminish lived experiences. It supports accurate, tailored care and it promotes better quality of life for all because it allows policy to. To get people what they actually need.
[00:28:35] Speaker A: That's right. And the capacity should determine that need. Right. If you. Absolutely.
I always find myself wishing I had all this time to go back and get like a PhD in evolutionary biology or psychology, because I find this all so deeply fascinating from, you know, the nervous system regulation of mothers and caregivers like myself who are at such max capacity, and yet they're still out there saying, we have to share what's real in order to get the support needs. When. What do you think?
How do you think, from a legislative point of view, from a policy standpoint, we don't collapse this into a single narrative yet still are able to keep autism spectrum disorder undivided.
[00:29:19] Speaker B: Well, that's a tricky question because there's, there's people who are going to say the only way to do it at this point is to divide it. And I do see that point of view. The bottom line is that families, like years, do not need more empty platitudes. What you need is tailored policy, tailored legislation, and tailored research on all fronts. And you need people that are advocating for that.
So I've kind of always been in the camp that it's like, I don't really care what you call it. You could call it severe autism, you call it Mickey Mouse disease, Like at some point it's gotta get specialized attention because the needs are so, so different from someone who needs intermittent support, needs help at a job interview. But like can drive themselves or can, you know, wipe themself and can feed themselves or can kind of report if someone's harmed them.
[00:30:10] Speaker A: That's right.
[00:30:11] Speaker B: Those two needs are vastly different. And so we need policy that is written very carefully. So you take one example, like the Medicaid settings rule, completely intended to promote all of the right things. Inclusion, independence, dignified treatment support.
But the way that it's written right now is built on a level of assumed independence that is not a feasible baseline or milestone for children like yours.
So until the policy acknowledges that there has to be some caveat for people for whom paid employment is not an option, for whom maybe a camera is going to keep them safe from abuse, until there's a caveat written into policy, your children will be excluded from the care and the treatment that this policy is intended to promote.
[00:31:00] Speaker A: So you know, I was talking with your executive director, Jackie Cancer about how there are some already established, well established programs and policies for combat injured veterans that come back with severe PTSD and how it can be very similar. We can actually take it as almost like a template for care for profound autism mothers and caregivers who are basically experiencing the same kind of intensity on a day to day, keeping children alive, making sure the risk of elopement is down, all these different things. I wonder if, if we start looking at it from a nervous system regulation of what the caregivers get to do. I wonder if we're able to maybe create a more a deeper understanding of what the severity is. Because it's when, when you witness it in the home, going back to our earlier conversation, when you witness that sort of dysregulation in the home from both ends of the spectrum, you will see what dysregulation looks like in real life and what it takes to support to keep a family regulated. And I think it sits really nestled nicely next to what is possible because we have started to look and do much more funding and programming and support for victims of with severe PTSD who have massive dysregulation of their systems from what they endured.
[00:32:20] Speaker B: I think that's extremely important. I think it proves even more why we need targeted attention on Level three. Right. Because Jill Escher said this. I forget where, but she is the president.
Yeah, we love Jill. She said, like, you know, autism has become so broad that, like, we don't even know who we're talking about anymore. So supposing I go to get money for that study and I'm like, I want to study autism mothers, that study is likely going to not be as targeted as it should be on the stress and the results and the impacts of caregiving for level three. If we do not specify that we are focused on level three mothers, mothers like you, who are, you know, changing their kind of prepubescent children and like all these other things that most moms don't have to do past the age of five years old.
Right.
[00:33:11] Speaker A: So that does on your brain. You was talking to other mothers, like, what that does on your brain. Like, as a primal female, you know, we weren't wired to do that. So a lot of that dysregulation comes in the fact that your brain and body literally weren't wired to do this past a certain age. So when your body, which it keeps score, decides to rebel against and, and, and, and, and, and drive up your stress and cortisol and adrenaline levels, we have to take a look at that not as a reason to spotlight and showcase, as a way to state the truth. And that's what I think. I'm so grateful for this conversation with you because I think that not just for your work, but how you show up in the reality of this space. It's rare to find someone like you who has both the lived experience of having a sibling, but you have really ability to hold such intellectual, you know, rigor and your deep personal commitment to this work. So I, I know that you're, you and your family should be very proud of that part of what drives your own mission.
[00:34:07] Speaker B: Absolutely. And like you said, right. You're trying to get the truth out there again, not just like, to get attention, but because you need help. We, like you, want policy, policymakers to recognize that this is your reality. And as we are kind of facing this first wave of autistic, severely autistic adults since that, like, end of the 90s when the institution thing kind of died down. Now we've got all these adults with severe autism being taken care of by aging caregivers, and they've got nowhere to go.
Right. You getting your truth out there is not to get attention. It's to say this is a real issue. We need funding. We need direct support professionals. We need to correct this like workforce gap in caretakers after I'm gone or after I can no longer do this. And so those are the facts. That is the truth. You've got to get that out there so that we can fix this gap.
[00:34:57] Speaker A: Yeah. I think, I mean to steal the words of Jackie Cancer, again, it's facility level care in the home. Right. And so we've decided to say these children belong with their parents. Absolutely. They belong with their families.
What did we have such a major miss on is that we now cloud it as well. That's just the love of a mother and parent.
She or he can do that because that's just what a parent does. And I think that as we strip back and just continue to march forward in sharing the truth of what actual support looks like, I hope I do. And I'm not someone that lives in La La land, I do have hope that the more in which people like you and I and others that are forward facing in advocacy roles can say, there's no cancel culture here.
There's no, there's an ability for everyone to sit at the table, but if we have to cancel, be able to have some very, very uncomfortable conversations that are grounded in radical acceptance of the realities and truth of everyone on the spectrum, period.
[00:35:59] Speaker B: Right. And that, and that, that is not because you're being negative. That's not because you're trying to stigmatize anyone. That is because you are trying to get this out there to destigmatize the reality, make it known and get solutions. That's it.
[00:36:10] Speaker A: Right. I mean it becomes this again, going back to like psychology. It becomes this like Darvo effect where you're like, wait, I'm seeing the truth yet I'm the one told to sit down. What is happening here? I mean there's so much, I'm sure your algorithm and mine, you know, gaslighting and narcissism and ego and all these things. You're like, wait a second. If we just continue to tell the truth and hold space for everyone being able to share what their day to day looks like, it will, I have full faith that it will continue to move the needle. I don't know if it's going to happen in my lifetime, but I do believe that the more individuals like you and I can speak to the actual live regality, policymakers, legislative systems, hopefully by the time my children are off the cliff, there is a greater understanding of what true support needs look like.
Yeah.
[00:36:57] Speaker B: And that's one of the hardest things I think about being part of this conversation in the current political climate because you come out and you say that. And again, people cannot always be trusted to see nuance. So all you want is to get your story out there in an intellectually honest way so that law and policy can be built around the proper baseline for people affected by this condition.
[00:37:18] Speaker A: Right, right.
[00:37:19] Speaker B: The minute you say that, people are going to say, well, you're talking about your child so negatively and you just hate your child and you know, you're just trying to institutionalize everybody. Again, none of that is true. You believe in dignity, you believe in inclusion, you believe in kindness, you believe in support. But what that looks like for your children is very, very different from what that looks like from someone on the other end of the spectrum. And that's, that's the bottom line.
[00:37:45] Speaker A: It really is. I mean, I think again, we could probably talk for hours on this, but I, I'm deeply thankful for the work that you're doing and you know, working alongside with the NCSA and deeply positioned to be a voice because I also have a typical developing 13 year old daughter who mirrors so much of what the experience that you probably had with your, with your brother. And I think that using your voice in this way, I hope. Well, it's. It very apparent that it comes from such a heart, heart center, base of yours because you saw this in your family and you saw what this did and what this continues to do, but as a way not to, not to shame or not to denigrate or not to say anything negative, but to reveal. And I think revealing and radical acceptance are one of the most beautiful things that for me, my children have given to me. Because I don't think in a million years I would be able to use the best gifts of my own individual self had I not been given children as beautiful and perfect as they are in all the ways that they need my love and support. And I think that you're doing the same and making so many of us proud to sit next to you. So, Christina Gadio, thank you so much for being here today on Inchtones and being willing to sit in the deep complexity of all this as your work moves forward.
[00:38:56] Speaker B: Thank you so much for having me. It's great to be here.
[00:38:59] Speaker A: Awesome. All right, well everyone, until next time here on the Inchtones podcast,
