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Severe Autism, Grief, and the Advocacy Families Need with Jill Escher · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome to the Inchtones podcast. Today I sound like the biggest, largest Guinness Book of World record, broken record saying that. But Jill Escher came into my life in the most word of the day, profound way, which is that we have been living very parallel lives, years apart. And yet Jill is one of the few people who speaks so poignantly and directly to the core of what I live as a mom of, to children with profound classic autism. And Jill does as well. She's the president of the National Council of Severe Autism. She's a writer, and she speaks so vulnerably about the reality, the actual lived reality of families like mine. Jill, it is such a pleasure to have you on the show today.
• 0:45
  Speaker B: Thanks so much for having me. And it's great to finally meet you in sort of person.
• 0:50
  Speaker A: Yes. You mean, I know, I. It was funny when you said E, meet E, introduce E, say hello. I'm like, that's what I say all the time. Jill. Give everyone a quick Cliff Notes version on Jill Usher and your children.
• 1:02
  Speaker B: Sure, yeah. Hello, everybody. I'm in the Bay Area of California. I am the mother of two grown children with profound autism. Ani is now 26 and he is non verbal. He has very minimal functional abilities, probably, you know, kind of toddler level, but a handsome, strong, robust guy with a lot of character. And I absolutely love him. He did go through a period of self injury and aggression and years and years of pretty pervasive property destruction, but a lot of that, not all of it, but a lot of it subsided with the right medication. So that's a story in and of itself. My daughter Sophie is how she, she turned 19 and she is also non verbal with very limited cognitive skills, very limited self help skills, just like her brother. But she is, generally speaking, you know, sweet, easygoing, a happy disposition. She loves going everywhere and seeing people and dancing and she loves music and she loves traveling and she loves swimming and she loves skiing and yada yada, yada. So, like, both my kids have profound autism, but they're like opposite ends of profound autism, if you will. So even within profound autism, there was this huge variability and I experience it well.
• 2:23
  Speaker A: Also you, you and I, again, what is, you know, we have boy and a girl. I am so into evolutionary primal biology right now because you strip everything down.
• 2:32
  Speaker B: I go, you're such a. Yeah, well, as you know, because you've commented on some of my work, I write a lot about biology and a lot of what I been doing for the past 13 years or so is funding and advocating for Research on new hypotheses about what could be causing autism in families like ours. Right. Where we have two children. At least my children are idiopathic, which means that we don't know what caused it. Right. There's no genetic markers. There was no adverse event, nothing unusual in my pregnancies. So I've come up with ideas about what may have happened. They're complicated ideas grounded in very advanced reproductive molecular biology. Because if anyone wants to geek out, I'll geek out with you about it.
• 3:20
  Speaker A: Well, I geeked out over your stuff.
• 3:22
  Speaker B: Thank you for geeking out.
• 3:23
  Speaker A: My dad's a physicist, so this is, like. This is part of my coding as well.
• 3:27
  Speaker B: Yeah, well, you know, someone's got to do it, because, you know, autism research has been in an absolute rut, in my opinion, for well over a decade. We've been in this cul de sac, just sort of driving around this cul de sac on and on and on and on, like, refusing to branch out into probably more promising avenues. So that's what I see as my main role in the autism world. I'm also president of the National Council on Severe Autism, which is an education and advocacy organization representing that portion of the autism spectrum where, you know, the. The people affected basically can't advocate for themselves, and they're very seriously, you know, disabled by their autism. So it's a busy life with all that. And I do some other things as well. But that's my nutshell.
• 4:13
  Speaker A: You and I both had our own, like, cells hit and our heartstrings tug during this past April when RFK spoke and sort of illuminated the lives that you and I actually live. And I know that there is so much rhetoric and so much messenger killing over that. And, you know, I stood firmly planted in that profound. Autism is nonpartisan, and I stood in the depth and knowledge of what I actually live every day. And I know you do, too. And I believe that what's coming undone is people being so angry at what we are saying that we don't care about how it's said. We're just glad someone said something. And there's a lot of anger around that. How do you feel like it has been a positive for the discussions on what you're hoping to do, to push forward, to destroy the current model of what research looks like and actually rebuild and create new ways of looking at this neurological pathway?
• 5:19
  Speaker B: Yeah. Well, I think there was a lot in your question, and maybe I'm reading too much into it, but I feel like there is a real mood shift on Several levels in the autism world right now. I mean, one mood shift is that, you know, cancel culture's really over. Like, I was. They tried to cancel me 500 million times, like, you know, for trying to speak the truth about my children's disabilities. And, you know, I was called every name and.
• 5:47
  Speaker A: Oh, yeah, yeah.
• 5:48
  Speaker B: And another thing that's happening is I think there is, at least in part, and maybe this is because of the Trump administration, and I'm no fan of RFK Jr. But at least, you know, they have been vocal about the need to figure out what the risk factors are for autism there. So there's been. There's been a shift in how our. Basically our state of utter complacency has been. We're moving from complacency to. To, I think, a new sense of urgency, which is absolutely vital. We're moving from a place of cancel culture and everybody afraid of speaking out to a place where people are comfortable speaking their truth. These are really, really important and positive developments, I think, in the autism world. When we started National Council on severe autism in 2019, publicly launched, people were horrified. Like, oh, my God. A group that's speaking out about severe autism. A group that's not backing down. A group that's not giving into the propagand. Oh, my God. You know, there was this quote, unquote, backlash to our announcement. Now everybody fully accepts what we do. I mean, we're not attacked really anymore for raising what we call hashtag, authentic awareness about severe and profound autism. So we. We have really seen a great mood shift happen. And I think that all of our truths are really fundamental to creating the change, to finding the answers, you know, that we really need. I'm not a sugar coater. I'm not. I'm like, I love my kids to pieces. I'm so involved. One thing I didn't mention when I gave my background was I'm past president of Autism Society, San Francisco Bay Area. I'm still on the board, and I'm the events chair. And one thing I do is I plan 80 events a year for our autism. Jill.
• 7:36
  Speaker A: Just a few.
• 7:37
  Speaker B: I. I have no. I don't know why I'm crazy. Jill, what are you doing this weekend? Oh, 500 things. So I love our community. I love serving our community. I love the kids in our community. I'm sort of a pseudo mom to a lot of kids who aren't my biological kids. I help take care of them as well. I absolutely love them. But at the same time, I see the immense growth in autism cases. I see the immense need for services. I mean, that cannot be denied. Nobody denies that. I see the suffering in families. I see the impoverishment of families. I see what happens when autism parents die, which is a tragedy beyond imagination. I see all these things. And I can live in a world where I love and support our kids and I champion our kids, but also speak to the devastation that they face.
• 8:32
  Speaker A: I think what I hear, and I live in this, too, and it's hard to transmit or give anyone a pill to understand this. I deeply believe in complexity and nuance. I. I do. I believe it because I live it right. You're saying you love your kids. I love everything about them. You also see the other side of it. And until you are living that day to day, hour, minute by minute, you know, there are some amazing skills as parents and as adults that we get to learn from these children. And at the same time, there is a. There is a deep heaviness and an emotional toll that it is required. We can't turn away. There's no alternative. There's zero alternative to this.
• 9:12
  Speaker B: That's the.
• 9:12
  Speaker A: The Israeli army, that's like their battle cry is no alternative. There is no alternative. You turn away and you say, that's not. That truth doesn't exist. Okay. Or you look and you say, wow, that does exist. And both can exist at the same time. That's. That's that. That's that beautiful complexity of life that it takes something like this to have someone pull the film back.
• 9:34
  Speaker B: Yeah. And, you know, I. I think that there's so much kind of trivializing of autism in the media, and I think people aren't in our world. They think that autism is a fairly manageable, quirky difference. They'll think it's somebody who has a job but maybe isn't very social or, you know, maybe somebody that goes to.
• 9:56
  Speaker A: College and just says, hey, I need to. I need my own room and I need some lighting. I can't be in a lift, you.
• 10:02
  Speaker B: Know.
• 10:05
  Speaker A: Classroom of 400 kids.
• 10:06
  Speaker B: Right. Or somebody with like, a prodigious memory who collects dinosaurs or something, but can still sort of live day to day or whatever. And those things do exist. I'm not begrudging people their own realities. But the fact of the matter is, you know, if you look at the CDC data now, 60% of people or children at least today with autism have IQs 85 and under or under 85, I believe under 85. And about 40% of those, I think. Yeah, about 40% of those have IQs. Under 70. So we're talking about really compromised cognitive ability. And even if they don't have very compromised cognitive ability, study after study after study shows really unexpectedly high rates of impairment in functional abilities. Right. So somebody might actually have kind of a normal ish iq, but their functional.
• 11:06
  Speaker A: Abilities, their ability to, to get dressed and the buttons and the, you know.
• 11:11
  Speaker B: Walk on the street, do I brush my teeth today? And oh my God, making this call, like, I'm so filled with anxiety, I can't make this basic call or I can't figure out how to navigate to like, get to the bus stop. Like, this is reality. These are things I see every day. So even those who are cognitively privileged often experience pretty significant disability. The people I tend to work with usually are in this 85 and below IQ group, and they, I have yet to meet one like, in that group that can really function independently. They need a lot of support. I mean, they're still living with their parents. They're still, they can't hold a job for the most part. I mean, it's, it's, it's not pretty.
• 11:54
  Speaker A: You're not making up these stories. I, I say, you know, when my son is left in a room, you know, to flip through his visual dictionaries that he can go through and just consume all the time. But if I go in the room and leave him alone for two minutes and he's eating drywall, that's different. You know what I mean? I'm sorry. That autism is not the same.
• 12:12
  Speaker B: It's not the same.
• 12:13
  Speaker A: It's not the same. I'm starting to realize that by denying that truth, it's erasure of what we are living and you're. And it says it's the truth. I can send you video. You know, this is data. This is data. And.
• 12:26
  Speaker B: Yeah.
• 12:27
  Speaker A: And when the, and when the other E word, like saying that we're exploiting children by showing what their realities are, I don't believe that to be true. I believe that in the mother and caregiving world, and we are primally wired to care and to protect our young, that is also part of this and to erase that and to say that that doesn't exist and that there's an, there's an energy depletion that is unlike any other is to say that we aren't living this day to day. And.
• 12:54
  Speaker B: Yes, yeah, Yeah. I mean, I could understand how, you know, like, I use euphemism when it's appropriate. Right. So like I said, I plan all these events every year for our local autism Community. I will use euphemism. I will talk about. We are having a concert for our neurodiverse audience.
• 13:15
  Speaker A: Right.
• 13:15
  Speaker B: We are having some speed dating for our neurodiverse friends. Because you know what? There's a place for positive positivism.
• 13:24
  Speaker A: There's companies about that, like, I love it. I think there's a competitive advantage for neurodiversity in the workplace. Without a doubt.
• 13:30
  Speaker B: Yeah. Yeah. So when, when appropriate, the problem is that should not bleed over into everything else.
• 13:37
  Speaker A: Right?
• 13:37
  Speaker B: So when we're saying, no, our kids are really disabled and they need access to treatments and they need access to behavior services and they need access to pharmaceuticals and they need access to ECT and they need access to emergency care and they need blah, blah, blah, blah, blah. And they need specialized classrooms and they need specialized kind of housing. None of those trivializations. None of that romanticization. Romanticization applies. Right. So what bothers me is this mindset that like every, like this black and white mindset that we have to use euphemism for everything. Like, that's where ridiculous. Like, would you do this in any other field of medicine? Like, you know, no, you wouldn't do this in any other field of medicine because. Or psychiatry. Because there is serious impairment that has to be addressed. And we can't call.
• 14:26
  Speaker A: We.
• 14:26
  Speaker B: We can call cancer, like cell differentiation syndrome.
• 14:30
  Speaker A: Exactly. But what.
• 14:31
  Speaker B: Does that help anybody? No, in the end, it does. That doesn't help anybody.
• 14:35
  Speaker A: It, again, it denies the lived reality of the kids and their families. I did, I write about this, but I want to share it live. I had a veteran comment on one of my posts and said, this reminds me of a friend who lost three limbs in frontline combat, who was told to join a group about losing limbs. And 99% of them had lost the tip of their pinky. That is not the same loss. That is an appendage. You're right. It's a. It's part of your appendage system. That is not the same. And if we start to force that to be the same, we are guarding a decaying system. And that's become a real sticking point where a lot of trolling and hate has come my way.
• 15:19
  Speaker B: I mean, listen, it is absolutely exasperating sometimes to debate these people who seem to dwell in a complete fantasy world. So like my kids, they can't add one on one. They can't read, they can't write, they can't make a text, they can't make a phone call, they can't brush their teeth, they can't put on their own clothes. They can't. They can't. Can't, can't, can't, can't, can't, can't. Like when you, you know, you've done the Vineland for your kids.
• 15:47
  Speaker A: Please.
• 15:47
  Speaker B: It's like. It's like when you're doing things that, like, even 12 months old, 18 months old, my kids can't do them.
• 15:54
  Speaker A: Again, primally, women, we are not supposed to have done that. I think as a woman who birthed and had healthy pregnancies too, I was wired to believe that that phase would end. Yeah, like, primally, like, my cells were not made to do this for life.
• 16:09
  Speaker B: For life.
• 16:09
  Speaker A: So it's asking my body to do something that it was not primally wired to do yet it's worthy. So how do we talk about that in a way that supports.
• 16:20
  Speaker B: No, I know exactly what you mean. Like, this is unnatural. And then I'm fed all the time. Oh, you know, you have two kids with autism. It must be genetic. And I'm like, well, guess what? No genes have been found despite, you know, multiple genetic tests. They don't have any markers of having genetic syndromes. They don't have any of the dysmorphologies. They don't have any other symptoms, and I have nothing like this, and neither does my husband. Up our family trees. So you can sit here and lecture me about how all of this is genetic because I have two. But it's. I don't look at this autism world and say, oh, this is all natural difference. This is all different expressions of being human. I don't look at it that way. It's like, as you said in the beginning, my passion is advocacy for research into what might be increasing these rates of autism. Why do we have, year after year after year after year, for the past 30 years, increasing prevalence of autism in almost every study that's ever been done on this.
• 17:20
  Speaker A: Right. And, you know, like, to. To. To hold space for the genetics. You know, my egg and my former husband's sperm created my children. That's. Yes, those are genes. But what were what. What made those. That egg and that sperm combine to create two children that have profound autism.
• 17:41
  Speaker B: Right? Well, that's exactly the question.
• 17:44
  Speaker A: I've read one of your articles about your mother, and I think to myself, like, okay, so what. What was in the environment? How did my grandmother live? How did my mom live? My egg was in my body. Of my mom's body.
• 17:56
  Speaker B: Yes, right. People don't realize. Isn't that interesting yet? My. My story is weird. And I. I don't necessarily think that what happened to me is necessarily common. But, yeah, my story in a nutshell for people who are like, what are they talking about? Was when I was a fetus, a little tiny, bitty embryo and fetus, long time ago, my mother was prescribed very, very heavy doses of synthetic steroid hormone drugs that at the time, they thought would help prevent preterm birth or miscarriage, mostly miscarriage. And they didn't end up actually working at all. None of these drugs actually had that effect. But it was kind of the mythos at the time in the medical community. So actually, millions of fetuses, really, until about 20, 23, treated with these synthetic steroid hormones. And there were. At the beginning, There were probably 20 different drugs. Like in the 60s, I was treated with five of them. And then more recently, it was kind of down to one preparation that was called McKenna. It's a fake progesterone called a progestin. But what's so amazing is that there's been so little research done on the outcomes of these children who basically whose development were heavily influenced by fake steroid hormones. And I don't want to go into biology too much. People are gonna be like, snooze. But it's really important during the development of egg and sperm that these. The development and the programming of the egg and sperm are highly influenced by hormonal exposure. So I. I don't actually focus my advocacy on my own story, my own hypothesis. I've been focusing my advocacy for, like, the past four years or so on the idea that actually general anesthesia to a parent influences egg and sperm quality and that that can result in neurodevelopmental abnormalities in their children. It's a very complicated hypothesis, and we've done quite a few animal studies on it that do show this happens, but we don't have any human studies on it yet. And so that's what I've been primarily advocating for. But it's a very long story. If people want to totally geek out, go to Jill Escher dot com. I have links to a lot of my papers, both papers in the lay literature and papers in the scientific liter. And you can learn all about it.
• 20:18
  Speaker A: I think the overarching macro subject is staying curious to what this all means and how it could have become this. And I think that that really scares people that don't understand the lives that we live. Again, I don't. I'm not FK's chief of staff or anything, but I think that when I Talk about conditioning and epidemiology and all these things. I mean, his dad challenged the system. Right. Decades ago. Rfk just challenging a system. And I think that what I would like to take from that is can we just stay curious to the what if? Can we just continue to ask and say, well, what do you see as a mother? Where does your intuition go on this? And I think that the work that you're doing is so ripe in that exact column because it doesn't say that we're going to be right. I always leave out the. Leave the possibility I could be wrong. But why am I not allowed to ask the question? Why can't we ask the questions about that?
• 21:15
  Speaker B: Why are we destroy.
• 21:17
  Speaker A: Why can't we destroy the narrative of 30, 40 years of saying autism is this. I don't believe vaccines cause autism, so that's fine. Can we. Can we think about other ways? Can you talk to the moms that are living this? Maybe what they're seeing day to day has maybe just a little bit of validity to it.
• 21:34
  Speaker B: Yeah. Well, here's how I see it. First of all, I love, love, love, love, love that you said this and you're focusing on this question of curiosity. Because I feel like, seriously, ever since, like, 2015, so it's been about 10 years, there's been almost no curiosity. Like, curiosity went out the door about, you know, what is, you know, what are the risk factors?
• 21:56
  Speaker A: What does that mean? I think as a whole, as a society, like, what are we even doing? We are guarding our own demise. Then if we can't stay curious, what are we saying? We're saying, cool, we'll just let this all ride.
• 22:07
  Speaker B: But this is what's happened in autism, really. We've sort of accepted this dogma that, well, autism's genetic. Well, autism's very heritable. Like. Like our families is very heritable. That doesn't necessarily mean it's genetic. Exactly. We lost curiosity because of that and because of the rise of the neurodiversity movement and, you know, probably some other factors as well. I think people are really wary about the vaccine narrative and they just didn't want to ask any more questions about environmental influences. But what I would say about, you know, parents stories is parent stories are not science. I want to agree with the research community on that. I do. But they are very important in hypothesis building. Correct. And the field had basically just stopped hypothesis building. That's right. And this is what we need more than anything. And you build hypotheses by observing things and talking to people and talking to families and collecting that and yeah. Is that science? No, that's not a paper that I can publish tomorrow and say, look, we found the answer. But it is a way to say, you know what, we've been able to develop this hypothesis that should be scientifically tested. That's right. And it's that I completely agree with you. Like, that step has been like skipped. Like, you know, scientists just are like, I care about genes. I don't care about anything else. I'm not listening anymore. And I said to, not said I.
• 23:29
  Speaker A: Wrote this a scientist. I said, I do. I believe that you believe that I am wrong. Like, I believe you. I believe that you think that. I just want everyone to stay open to the possibility that we might be wrong about something, that there might be something else.
• 23:43
  Speaker B: I've been really immersed in the scientific world. Like I was a board member of a major scientific society. I've published in many scientific papers. I've given a lot of scientific grants. I'm friends with scientists literally around the world. I've spoken at many scientific conferences. I'm really deep, about as deep as an autism mom can possibly get in the scientific world. The scientific world doesn't operate as rationally as you think it should. It is guided by two things.
• 24:12
  Speaker A: Brand scientists can't get away from being a human.
• 24:15
  Speaker B: So yeah, they're very conservative. They're very, very conservative. They're, they're worried about their grants, they're worried about their reputations. Right. They exist in these academic ivory tower bubbles that are very real. I've talked to autism researchers that have almost no interaction with autism. You know, people with autism. Yes, yes. Yeah.
• 24:38
  Speaker A: Why can't we challenge the systems around it? And that's what I keep coming back to is like, if we're finally able to maybe destroy the model, the semantics of it all, and the psychological bullshit that people want to just complete to say that they're going to turn away using words. Maybe we'll finally get back to actually thinking about.
• 24:57
  Speaker B: That's a great hypothesis.
• 24:59
  Speaker A: A few, few hundred moms or a few hundred caregivers have really said this.
• 25:03
  Speaker B: Maybe we should explore that. Well, exactly. That's what I try to do on my hypothesis. I'm not saying there aren't others out there. I welcome other people to come up with other ideas. I've just, I've interviewed 350 plus autism families over the years about their family histories and that's what enabled me to develop this hypotheses hypothesis that a parent's history of surgery under general anesthesia is related to risk for autism in their children. It's a weird hypothesis that I did not expect. I did not expect it was not.
• 25:36
  Speaker A: On scientific of you. Isn't that so cool?
• 25:38
  Speaker B: This came from hypothesis came from literally surveying and talking to families. So, you know, I, I do have a little bit of hope. I mean this administration I think is, as I said, I'm not a fan of RFK Jr. But at least he and Dr. J. Bhattacharya, who's the head of the NIH. Dr. J. Bhattachary is actually a very intelligent man. They have a keen interest in uncovering, you know, so far undiscovered risk factors. They have said that they're putting some money towards that. Whether they, how this will all evolve, we're not quite sure. But I have a little bit of hope that at least public money will go in new directions and not just be funding the same old, same old, same all over again. Unfortunately, the private foundations are still funding basically genetics all, all genetics all the time. And I, I'm a fan of genetics, but we're just not going to make that much more progress there. I agree. So, you know, I have, I have seen some slight cautious hope.
• 26:45
  Speaker A: I just love knowing that the conversations of real people really living this, there's nothing that creates anxiety about someone's actual truth of their life. And this is the truth of so many families that we talk to say I'm going to show up, I'm going to find the, the silver lining in all of this. And there's also a really, really open wound that I'm going to just keep looking for answers and asking questions and knowing that I'm not alone. I always say I'm not. I know I'm not unique. I'm unique to a lot of people, but I'm not, I'm not unique.
• 27:18
  Speaker B: I know you're definitely not. Yeah.
• 27:21
  Speaker A: Jill, thank you so much for your time. You are 1000% of the person that say, you know, you're standing on the shoulders of giants. I know 1000% that I am standing on your shoulders because you, you have led and elevated the community of real truth tellers, very radical mothers who have not shied away from what their day to day is and elevating the community and loving us all through it. So thank you for what you do.
• 27:45
  Speaker B: Yeah, thanks, Sarah. And I really encourage your followers to look up National Council on severe autism ncsautism.org Please follow us. We do not shy away from reality at all. And we are doing more and more active engagement with, with policymakers and hoping to make a long term difference.
• 28:07
  Speaker A: You are? Absolutely. All right, everyone. Well, until next time on the Inchtons podcast.