WEBVTT NOTE This file was generated by Descript 00:00:07.094 --> 00:00:09.614 Candace Dellacona: Welcome to the Sandwich Generation Survival Guide. 00:00:09.614 --> 00:00:12.414 I am your host, Candace Dellacona. 00:00:13.254 --> 00:00:18.704 Our goal, with this podcast is to provide resources to those of us in 00:00:18.704 --> 00:00:22.528 the middle trying to advocate for our aging loved ones and supporting 00:00:22.528 --> 00:00:25.858 the next generation, launching our children or our nieces or our nephews, 00:00:25.858 --> 00:00:27.418 or those who we love into life. 00:00:28.468 --> 00:00:32.788 And many of us out there are advocating for our children and our younger loved 00:00:32.788 --> 00:00:35.188 ones with different and or special needs. 00:00:35.588 --> 00:00:39.928 And to answer that segment of our listeners, I am so 00:00:39.928 --> 00:00:42.888 honored today to have Dr. 00:00:42.888 --> 00:00:44.248 Theresa Lyons. 00:00:45.088 --> 00:00:45.628 Dr. 00:00:45.628 --> 00:00:48.208 Lyons is a Yale trained scientist. 00:00:48.208 --> 00:00:49.798 She's a medical strategist. 00:00:50.368 --> 00:00:54.028 She is most importantly the parent of an amazing daughter 00:00:54.028 --> 00:00:56.068 who also happens to be autistic. 00:00:57.148 --> 00:00:57.463 Dr. 00:00:57.463 --> 00:01:01.898 Lyons is also the founder of an organization called Navigating AWEtism, 00:01:01.918 --> 00:01:07.588 where she provides insight and coaching and quarterbacking to the parents 00:01:07.588 --> 00:01:09.328 in this segment of the population. 00:01:09.328 --> 00:01:10.273 So Dr. 00:01:10.273 --> 00:01:12.148 Lyons welcome. 00:01:13.178 --> 00:01:13.179 Dr. Theresa Lyons: 00:01:13.178 --> 00:01:13.728 Thank you. 00:01:13.728 --> 00:01:15.038 I'm very excited to be here. 00:01:15.538 --> 00:01:18.738 Candace Dellacona: It's quite an introduction for, quite a person. 00:01:18.738 --> 00:01:21.078 I just wanna say thank you so much for being here. 00:01:21.078 --> 00:01:26.308 As I mentioned, our goal is to provide resources, so you are here for that. 00:01:26.728 --> 00:01:30.418 We have never been lucky enough to have someone speak to the segment 00:01:30.418 --> 00:01:33.718 of the population, and so we're really happy to have you here. 00:01:34.118 --> 00:01:37.718 I know that so many of our listeners are looking for resources, and 00:01:37.718 --> 00:01:38.948 that is really what you are. 00:01:38.948 --> 00:01:40.658 So why don't we start at the beginning. 00:01:40.658 --> 00:01:41.078 Dr. 00:01:41.078 --> 00:01:45.008 Lyons, can you tell us a little bit about your background and how you got here? 00:01:46.013 --> 00:01:46.014 Dr. Theresa Lyons: 00:01:46.013 --> 00:01:46.303 Sure. 00:01:46.483 --> 00:01:50.158 So this was not planned at all whatsoever for me to be where I am 00:01:50.158 --> 00:01:52.798 right now, but that really is life. 00:01:52.828 --> 00:01:56.518 I have a PhD in computational chemistry from Yale University. 00:01:56.958 --> 00:02:01.788 My research then was focused on drug discovery, and so after my PhD I 00:02:01.788 --> 00:02:08.208 worked in big pharma and worked on optimizing drugs and then switched over 00:02:08.208 --> 00:02:14.243 to the business side and created an understanding of how doctors practice 00:02:14.243 --> 00:02:18.853 medicine and how pharmaceutical companies increase their revenue in the sense 00:02:18.853 --> 00:02:20.443 of doctors practicing in medicine. 00:02:20.443 --> 00:02:21.403 So I was a strategist. 00:02:21.403 --> 00:02:23.503 I worked in many different therapeutic areas. 00:02:23.803 --> 00:02:26.413 It was definitely high paced and high pressure. 00:02:26.863 --> 00:02:29.653 And then my daughter was diagnosed with autism. 00:02:30.193 --> 00:02:33.523 And I said, all right, what's standard of care? 00:02:33.523 --> 00:02:34.843 Gimme the options. 00:02:34.843 --> 00:02:36.493 And there really was none. 00:02:36.793 --> 00:02:39.193 And that was really unacceptable. 00:02:39.553 --> 00:02:41.053 And that's what started me on this path. 00:02:42.273 --> 00:02:48.108 Candace Dellacona: And so as a scientist, you approach probably a diagnosis like 00:02:48.108 --> 00:02:51.078 this different than the average person. 00:02:51.078 --> 00:02:55.818 Also someone who's had exposure to big pharma and looking for pharmaceuticals 00:02:56.388 --> 00:03:01.938 as the solution to many of the things that sort of ail us as a society. 00:03:01.938 --> 00:03:08.568 So taking your perspective, maybe as a parent, I would imagine that most 00:03:08.568 --> 00:03:14.268 parents, when they learn of their child's diagnosis, they go through a plethora of 00:03:14.358 --> 00:03:17.178 emotions, probably shock and confusion. 00:03:17.178 --> 00:03:22.733 For those of us who are not familiar with autism and the broad spectrum that 00:03:22.853 --> 00:03:26.803 it presents in terms of possibilities and what their child's future 00:03:26.803 --> 00:03:28.603 must look like and probably grief. 00:03:29.173 --> 00:03:34.873 So can you speak to how you dealt with it at first as a mom to your daughter, 00:03:34.873 --> 00:03:40.963 and then what sort of kicked you into gear, taking on that scientific approach 00:03:40.993 --> 00:03:45.493 to find the protocols and the treatments that you didn't see as being available? 00:03:46.333 --> 00:03:46.334 Dr. Theresa Lyons: 00:03:46.333 --> 00:03:46.933 Sure. 00:03:47.203 --> 00:03:50.713 So I had two basically almost personas back then. 00:03:51.493 --> 00:03:52.123 Candace Dellacona: Right, right. 00:03:52.123 --> 00:03:52.773 I can see that. 00:03:52.838 --> 00:03:52.839 Dr. Theresa Lyons: 00:03:52.838 --> 00:03:53.408 Dr. 00:03:53.408 --> 00:03:56.048 Lyons, and then I had mom, right? 00:03:56.048 --> 00:04:00.218 So it was, it was me switching back and forth between those roles. 00:04:00.218 --> 00:04:05.603 And as I assembled a healthcare team for my daughter, I was really in Dr. 00:04:05.603 --> 00:04:06.368 Lyons mode. 00:04:06.428 --> 00:04:09.848 So when I would go and meet the doctors, when I would even make appointments 00:04:09.848 --> 00:04:14.018 and start to get to know the office staff, it was all in the role of Dr. 00:04:14.018 --> 00:04:14.358 Lyons. 00:04:14.378 --> 00:04:18.968 So that emotional side of me was put to the side, because once I started 00:04:18.968 --> 00:04:22.708 getting emotional, I couldn't focus, I couldn't come up with a good plan. 00:04:22.918 --> 00:04:25.438 You know, it's a totally different part of my brain. 00:04:25.438 --> 00:04:28.498 So there really was those two personas. 00:04:28.858 --> 00:04:31.348 But I definitely felt those emotions. 00:04:31.348 --> 00:04:35.508 So, after my daughter was diagnosed, it was in a large hospital. 00:04:35.508 --> 00:04:39.228 We get into the parking lot and you know, I get her strapped into her 00:04:39.228 --> 00:04:42.648 car seat and of I just start crying. 00:04:43.158 --> 00:04:50.178 Even though it wasn't a surprise, but it's still, it's, it was a change in 00:04:50.178 --> 00:04:52.338 the future of what I ever thought. 00:04:52.678 --> 00:04:55.678 When I was pregnant, this was not what I imagined. 00:04:55.678 --> 00:04:59.608 I had all these, fairytale kind of versions of what motherhood was, and 00:05:00.088 --> 00:05:05.668 this was just about entirely opposite to everything I was expecting. 00:05:06.673 --> 00:05:09.433 Candace Dellacona: And how old was your daughter when she was diagnosed? 00:05:09.958 --> 00:05:09.959 Dr. Theresa Lyons: 00:05:09.958 --> 00:05:11.098 She was three and a half. 00:05:11.518 --> 00:05:13.883 And I will say that is on the later side. 00:05:13.933 --> 00:05:18.518 If parents are listening to this and they're thinking you can get a diagnosis 00:05:18.518 --> 00:05:21.858 later and still have a favorable outcome. 00:05:21.858 --> 00:05:28.573 So the average age of a diagnosis is around five, but a reasonable and accurate 00:05:28.633 --> 00:05:30.943 diagnosis can be made at 18 months. 00:05:31.438 --> 00:05:32.033 Candace Dellacona: Oh wow. 00:05:32.033 --> 00:05:33.023 So significantly. 00:05:33.703 --> 00:05:33.704 Dr. Theresa Lyons: 00:05:33.703 --> 00:05:34.183 yeah. 00:05:34.218 --> 00:05:34.963 Yes, yes, yes. 00:05:35.023 --> 00:05:39.393 So, back when my daughter was diagnosed, I worked with the team 00:05:39.393 --> 00:05:43.238 that we were assembling really to make sure we eliminated any other 00:05:43.238 --> 00:05:47.813 possibility because an autism diagnosis is based on observation. 00:05:48.263 --> 00:05:52.693 So, you have an observation and an evaluation from speech therapy 00:05:52.693 --> 00:05:56.523 and occupational therapy and physical therapy and some type 00:05:56.523 --> 00:05:59.133 of psychology or learning aspect. 00:05:59.463 --> 00:06:03.573 And then all of those reports get sent to a developmental pediatrician 00:06:03.573 --> 00:06:07.628 or pediatric neurologist, and they look at those observations. 00:06:08.358 --> 00:06:12.058 They see your child, the appointment might be 30 minutes or 45 minutes, 00:06:12.058 --> 00:06:16.278 and they see your child and after 20 minutes or so, they make a diagnosis. 00:06:16.468 --> 00:06:23.218 Short observations and we really spent time making sure it wasn't anything else. 00:06:23.268 --> 00:06:24.168 And it wasn't. 00:06:24.903 --> 00:06:28.113 Candace Dellacona: And so ruling out the possibilities was part of your 00:06:28.113 --> 00:06:32.643 exercise and I assume part of others exercise when coming to this diagnosis. 00:06:32.643 --> 00:06:39.303 Here you are as a scientist and like you say, wearing these two hats as a mom and 00:06:39.303 --> 00:06:42.573 as somebody who is experienced with data. 00:06:43.083 --> 00:06:48.213 And you receive this diagnosis and when you get over the sort of blow of 00:06:48.303 --> 00:06:52.473 thinking about what her life may have in store, which is perhaps different 00:06:52.473 --> 00:06:56.103 than what you first thought, what was your next first step in finding 00:06:56.103 --> 00:06:57.483 and assembling the right team? 00:06:58.638 --> 00:06:58.639 Dr. Theresa Lyons: 00:06:58.638 --> 00:06:58.908 Okay. 00:06:58.908 --> 00:07:06.178 So the emotional aspect I don't think has ever stopped and I definitely oscillate. 00:07:06.893 --> 00:07:07.113 Candace Dellacona: Fair. 00:07:07.333 --> 00:07:07.513 Fair. 00:07:07.648 --> 00:07:07.649 Dr. Theresa Lyons: 00:07:07.648 --> 00:07:07.798 Yeah. 00:07:08.908 --> 00:07:11.428 I just put it on pause and I switch into Dr. 00:07:11.428 --> 00:07:12.088 Lyons mode. 00:07:12.773 --> 00:07:14.363 And then certainly go back. 00:07:14.463 --> 00:07:16.563 So when I would have doctor's appointments, I 00:07:16.563 --> 00:07:17.973 would go in with an agenda. 00:07:18.123 --> 00:07:21.273 And these are the talking points that I have, and this is the research either 00:07:21.273 --> 00:07:23.163 that I've done or that I wanna discuss. 00:07:23.163 --> 00:07:27.363 And these are the tests I wanna either go over for their expertise or these 00:07:27.363 --> 00:07:28.773 are the tests that I want ordered. 00:07:29.043 --> 00:07:32.583 And so it would all be summarized in a one pager I'd sent to 00:07:32.583 --> 00:07:34.143 the doctor the day before. 00:07:34.533 --> 00:07:38.428 And so they, they definitely came into the appointment prepared. 00:07:38.738 --> 00:07:42.628 I don't like to surprise people with my level of organization or questions. 00:07:42.628 --> 00:07:46.098 And I, I really invite that dialogue and that partnership. 00:07:46.158 --> 00:07:50.778 So that was something that really had to be cultivated and I learned that from 00:07:50.838 --> 00:07:55.428 my medical strategist days of, okay, you have a key opinion leader, right? 00:07:55.458 --> 00:07:59.828 So we want the best doctors and we really wanna tap into that knowledge. 00:07:59.828 --> 00:08:01.208 So you wanna go in there prepared. 00:08:01.208 --> 00:08:03.608 Otherwise, the worst thing that happens is you leave your doctor's 00:08:03.608 --> 00:08:05.408 appointments and then you're like, ah. 00:08:05.978 --> 00:08:07.148 I forgot to ask. 00:08:07.148 --> 00:08:12.653 And that's just, and the way it was back then was, we weren't sleeping, 00:08:12.653 --> 00:08:17.923 so it really took me a lot of effort to be organized just because when 00:08:17.923 --> 00:08:21.303 someone doesn't sleep, cognition starts to go a little bit for sure. 00:08:21.723 --> 00:08:23.613 Candace Dellacona: And as a parent too, like you said, the 00:08:23.613 --> 00:08:25.353 emotional piece never turns off 00:08:25.563 --> 00:08:25.564 Dr. Theresa Lyons: 00:08:25.563 --> 00:08:26.103 oh no. 00:08:26.543 --> 00:08:29.933 Candace Dellacona: I think it's so important to keep in mind that you're not 00:08:29.933 --> 00:08:34.073 going about this in a clinical fashion as much as you would like to, as a clinician 00:08:34.083 --> 00:08:38.563 as someone who holds her PhD in chemistry. 00:08:38.643 --> 00:08:43.778 Having your daughter's diagnosis be the subject of the appointment, 00:08:43.808 --> 00:08:47.133 obviously makes you incredibly vested. 00:08:47.133 --> 00:08:50.343 And so it's really easy to lose sight of those questions. 00:08:50.343 --> 00:08:52.253 I think that's fantastic advice. 00:08:52.813 --> 00:08:57.643 Telling a parent to set the agenda and send that information in advance so that 00:08:57.643 --> 00:09:01.753 the physician and the care providers have some time to understand what 00:09:01.753 --> 00:09:05.763 your question will be so that they're prepared with answers and they make the 00:09:05.763 --> 00:09:10.573 appointment as useful for everyone as possible, so in terms of, assembling 00:09:10.573 --> 00:09:17.203 the right team, can you kind of give us the inside scoop on when a family 00:09:17.203 --> 00:09:23.023 comes to you having just received this diagnosis, what is the protocol that 00:09:23.053 --> 00:09:28.063 you help families set up when taking the next step after a diagnosis? 00:09:28.733 --> 00:09:28.734 Dr. Theresa Lyons: 00:09:28.733 --> 00:09:29.093 Sure. 00:09:29.093 --> 00:09:31.643 So you wanna use both sides of medicine. 00:09:31.643 --> 00:09:35.333 So there's conventional medicine and then there's functional 00:09:35.333 --> 00:09:36.683 or integrative medicine. 00:09:37.013 --> 00:09:42.123 And so conventional medicine is, let's just use the example of constipation. 00:09:42.333 --> 00:09:47.223 'cause constipation occurs often in autism, and it is not just autism. 00:09:47.223 --> 00:09:51.873 So some doctors and people just think, oh, if you have autism, then more than 00:09:51.873 --> 00:09:53.913 likely you're gonna have some GI issues. 00:09:54.153 --> 00:09:58.563 There's no reason for a person with autism to go through life with GI issues. 00:09:58.623 --> 00:10:01.473 So I'm gonna use a basic example of constipation. 00:10:01.473 --> 00:10:05.283 So conventional medicine, you might go to a general pediatrician or maybe a GI 00:10:05.283 --> 00:10:10.628 specialist and maybe their first piece of advice would be, all right, let's 00:10:10.688 --> 00:10:12.368 give the child some MiraLax, right? 00:10:12.368 --> 00:10:13.538 Get things moving. 00:10:13.778 --> 00:10:15.488 So that's a short-term solution. 00:10:15.908 --> 00:10:19.928 But if you stop the MiraLax, are you gonna be exactly where you were before? 00:10:20.108 --> 00:10:21.098 More than likely, yeah. 00:10:21.608 --> 00:10:25.268 So conventional medicine has more of a short-term focus 00:10:25.268 --> 00:10:26.678 of let's resolve the problem. 00:10:26.738 --> 00:10:27.578 Very important. 00:10:27.638 --> 00:10:32.563 If someone's constipated, that can create issues in learning and sleep 00:10:32.563 --> 00:10:36.243 and being comfortable and eating, so many things that are important. 00:10:36.243 --> 00:10:38.523 So it is good to resolve that. 00:10:38.823 --> 00:10:41.763 But then functional medicine, a different aspect of medicine is 00:10:41.763 --> 00:10:43.563 looking at what's the root cause. 00:10:43.983 --> 00:10:48.563 So a doctor that practices functional medicine or integrated medicine might 00:10:48.563 --> 00:10:50.573 say, okay, the child's constipated. 00:10:50.983 --> 00:10:52.513 What would be causing that? 00:10:52.693 --> 00:10:54.333 So is it improper diet? 00:10:54.333 --> 00:10:55.533 Is there not enough fiber? 00:10:55.803 --> 00:10:57.393 Is there not enough hydration? 00:10:57.573 --> 00:10:58.743 How much are they drinking? 00:10:59.073 --> 00:11:01.413 Is there some type of gut infection? 00:11:01.463 --> 00:11:05.903 So you can start then asking the why, and those solutions will 00:11:05.903 --> 00:11:07.523 really impact things long term. 00:11:07.913 --> 00:11:12.263 You really wanna start to build a team that has different perspectives and you'll 00:11:12.263 --> 00:11:16.913 have to have different specialists so that every aspect of health is covered. 00:11:16.913 --> 00:11:22.863 'cause there's no reason whatsoever for someone with autism to live, a life 00:11:22.923 --> 00:11:31.083 of GI problems or anxiety or OCD or sleep problems or picky eating, right? 00:11:31.083 --> 00:11:34.773 There's so many things that we just assume, oh, that's 00:11:34.773 --> 00:11:37.268 just autism, but it's not. 00:11:37.568 --> 00:11:41.528 And these things certainly can be resolved and should have attention 00:11:41.528 --> 00:11:42.668 on them from a healthcare standpoint. 00:11:44.048 --> 00:11:46.323 Candace Dellacona: And how does a family go about finding 00:11:46.373 --> 00:11:50.363 integrative medicine specialist or a functional medicine doctor? 00:11:50.813 --> 00:11:55.463 Particularly, in light of what many have called the healthcare crisis now, 00:11:55.853 --> 00:11:59.993 making sure that their doctors are accessible and even more rural areas. 00:12:00.033 --> 00:12:04.543 I'm fortunate enough to be here in New York City and probably there are more of 00:12:04.543 --> 00:12:06.613 those physicians available to families. 00:12:06.613 --> 00:12:13.018 But how do you guide your families and finding the right functional medicine 00:12:13.018 --> 00:12:14.473 doctor to help with an autism diagnosis? 00:12:16.518 --> 00:12:16.519 Dr. Theresa Lyons: 00:12:16.518 --> 00:12:20.988 So functional medicine doctors, typically you have to pay out of pocket so they 00:12:20.988 --> 00:12:23.448 don't participate with insurance plans. 00:12:23.898 --> 00:12:28.918 And I got very knowledgeable on functional medicine because I really wanted to, to 00:12:28.918 --> 00:12:30.838 pick the right doctors for my daughter. 00:12:31.108 --> 00:12:35.488 So I studied all of them in the US that focus on autism. 00:12:35.788 --> 00:12:39.568 And then as I started working with parents and helping them assemble their team, 00:12:39.778 --> 00:12:42.028 I got to know many of these doctors. 00:12:42.088 --> 00:12:45.118 And then I did write a book in 2020. 00:12:45.118 --> 00:12:46.498 It's called The Lyon's Report. 00:12:46.828 --> 00:12:50.728 And so it explained what functional medicine is, explained different science 00:12:50.728 --> 00:12:55.418 based information that parents should know or grandparents should know about autism. 00:12:55.688 --> 00:12:59.418 And then it also had a directory of the top functional medicine doctors 00:12:59.418 --> 00:13:01.968 in the US that focus on autism. 00:13:01.968 --> 00:13:04.218 So these were like the key opinion leaders. 00:13:04.548 --> 00:13:09.738 And in 2026, we will release a updated version of that book as well. 00:13:09.738 --> 00:13:13.248 So it really depends on where someone is in the States. 00:13:13.458 --> 00:13:17.808 Certain states you don't ever have to visit the doctor in person, so it could be 00:13:17.808 --> 00:13:20.298 entirely virtual, which is a real benefit. 00:13:20.298 --> 00:13:24.708 So like the state of Oregon, if there's a functional medicine doctor in Oregon, they 00:13:24.708 --> 00:13:30.268 can actually see any patient in the US and you don't have to visit them once a month. 00:13:30.268 --> 00:13:34.278 Whereas in New York State the law is that the person has to have at 00:13:34.278 --> 00:13:36.648 least one in-person visit per year. 00:13:36.948 --> 00:13:39.468 So different states have different requirements. 00:13:39.508 --> 00:13:43.138 And so it's just important to figure out what works best for the family. 00:13:43.793 --> 00:13:46.728 Candace Dellacona: Yeah, I think, and we will obviously have a link to your 00:13:46.728 --> 00:13:51.458 book in the show notes, and I think, part of the Sandwich Generation Survival 00:13:51.458 --> 00:13:56.068 Guide's goal is to provide resources like this and people like you so 00:13:56.068 --> 00:13:57.878 that families do know where to begin. 00:13:58.328 --> 00:14:02.288 But, going to The Lyon's report, you put so much work into providing 00:14:02.288 --> 00:14:06.968 the sky for families and parents, grandparents, even as you mentioned. 00:14:07.358 --> 00:14:15.358 What would you say are the few facts that many families come to you that are not 00:14:15.448 --> 00:14:21.828 aware of from a scientific perspective and how that can impact both the child with 00:14:21.828 --> 00:14:25.008 autism and be a guide for the families? 00:14:25.008 --> 00:14:29.868 Are there sort of, lesser known scientific facts as it relates to 00:14:29.868 --> 00:14:31.908 those who have the autism diagnosis? 00:14:32.573 --> 00:14:32.574 Dr. Theresa Lyons: 00:14:32.573 --> 00:14:34.163 Yes, there certainly is. 00:14:34.163 --> 00:14:41.243 So one of the reasons why I went all in and really wanted to understand 00:14:41.243 --> 00:14:45.723 more and more of the science was when I first started there were publications, 00:14:45.723 --> 00:14:50.353 just occasional ones sprinkled over the decades of autism showing that 00:14:50.353 --> 00:14:55.748 a diagnosis is not lifelong for everyone who's diagnosed with autism. 00:14:55.808 --> 00:15:01.058 So when my daughter was diagnosed, it was about 10% of kids diagnosed 00:15:01.058 --> 00:15:03.608 with autism lost their diagnosis. 00:15:03.758 --> 00:15:07.688 And when I say lost it, it means, right again, it's observation. 00:15:07.938 --> 00:15:10.818 The researchers called that a optimal outcome. 00:15:11.228 --> 00:15:13.868 So it was 10% optimal outcome. 00:15:13.868 --> 00:15:17.478 The research back then was within about two years of there being a 00:15:17.478 --> 00:15:20.298 diagnosis, then about 10% lost. 00:15:20.328 --> 00:15:25.178 So for me, I thought, whoa this is a huge divergence of possible outcomes, right? 00:15:25.178 --> 00:15:27.968 So in one hand, I'm told there's nothing you can do. 00:15:28.478 --> 00:15:31.593 Autism typically gets worse, it doesn't get better. 00:15:32.043 --> 00:15:35.063 And you just kind of like accept how things are. 00:15:35.063 --> 00:15:38.573 You could do maybe some ABA, which is applied behavioral analysis 00:15:38.883 --> 00:15:40.353 but it doesn't work for everyone. 00:15:40.353 --> 00:15:42.753 And that's pretty much it. 00:15:42.993 --> 00:15:45.693 Whereas I'm reading this research and it's saying, wait a 00:15:45.693 --> 00:15:48.213 second, 10% lose the diagnosis. 00:15:48.663 --> 00:15:50.283 How is that possible? 00:15:50.283 --> 00:15:50.493 Right? 00:15:50.493 --> 00:15:55.508 So that, that's what got me really interested in knowing the 00:15:55.508 --> 00:15:57.008 details, knowing the science. 00:15:57.308 --> 00:16:02.238 And then now in 2023, new research was published, and this was from 00:16:02.238 --> 00:16:06.258 Boston Children's Hospital up in Massachusetts, very reputable hospital. 00:16:06.648 --> 00:16:09.888 And their research, they followed a little over 200 kids. 00:16:10.308 --> 00:16:16.048 And when they were diagnosed, average two years of age, they did analysis at follow 00:16:16.048 --> 00:16:18.088 up age, somewhere between five and seven. 00:16:18.383 --> 00:16:22.923 And they found 37% of kids with autism lost their diagnosis. 00:16:23.973 --> 00:16:28.923 So they've actually now in the scientific literature, they're calling 00:16:28.923 --> 00:16:34.523 autism, there's a non-persistent autism and then there still is autism 00:16:34.553 --> 00:16:36.383 as it's generally been defined. 00:16:36.713 --> 00:16:41.933 But there's so much change that is going on that they've had to reclassify. 00:16:42.203 --> 00:16:46.433 And the thing is, information like this is not known to the general public. 00:16:47.153 --> 00:16:47.903 Candace Dellacona: Well, for sure. 00:16:47.903 --> 00:16:51.443 And when you think of a lost diagnosis, it almost sounds negative, 00:16:51.443 --> 00:16:52.083 but I think what you're saying. 00:16:52.373 --> 00:16:53.783 Is the opposite, right? 00:16:54.123 --> 00:16:54.124 Dr. Theresa Lyons: 00:16:54.123 --> 00:16:55.353 Yeah, this is, yes. 00:16:55.353 --> 00:16:55.773 Yeah. 00:16:55.803 --> 00:16:58.503 So that means that child doesn't need speech therapy anymore. 00:16:58.563 --> 00:17:03.243 It doesn't need occupational therapy or physical therapy or TA at school or, 00:17:03.493 --> 00:17:05.203 all these other additional supports. 00:17:05.253 --> 00:17:08.703 It's, they're off doing life, right? 00:17:08.763 --> 00:17:13.278 Not having any of those barriers, whereas parents whose kids have 00:17:13.278 --> 00:17:18.288 autism, a lot of times we see our kids want to do something, but 00:17:18.348 --> 00:17:20.388 they're inhibited in some way. 00:17:20.388 --> 00:17:24.408 Either they can't speak or, they have motor control issues, or maybe 00:17:24.408 --> 00:17:28.488 anxiety is too high in order to participate in some social things. 00:17:28.848 --> 00:17:33.978 So it's really important for parents to know this information and then use it 00:17:33.978 --> 00:17:36.278 to, to help them follow their intuition. 00:17:36.308 --> 00:17:39.028 'cause a lot of times parents have that little knowing voice. 00:17:39.028 --> 00:17:40.498 It's like something could be different. 00:17:41.648 --> 00:17:43.238 Candace Dellacona: Listening to that is really important. 00:17:43.238 --> 00:17:44.708 I think that leads to advocacy. 00:17:45.633 --> 00:17:48.003 To that point from Boston Children's, I think that bit of 00:17:48.003 --> 00:17:50.223 research seems pretty hopeful. 00:17:50.473 --> 00:17:56.113 And it also seems to me, and again, not a scientist, but having a number, like 00:17:56.113 --> 00:18:02.743 37% of kids losing their diagnosis means that we're onto something and perhaps 00:18:02.743 --> 00:18:05.353 there are therapies that are working. 00:18:05.353 --> 00:18:09.898 And so, for those parents who are out there who have just perhaps received 00:18:09.988 --> 00:18:14.368 the diagnosis or they have a, that feeling in their stomach saying something 00:18:14.368 --> 00:18:18.688 is wrong, knowledge is power, and there's so much hope in those numbers. 00:18:18.868 --> 00:18:18.869 Dr. Theresa Lyons: 00:18:18.868 --> 00:18:19.378 Yes. 00:18:19.408 --> 00:18:21.748 And that number, as you can see, is just growing. 00:18:21.748 --> 00:18:26.338 And that's what I saw back even in 2013 when I was reading the research. 00:18:26.338 --> 00:18:28.858 It was like, whoa, this number is just 10%. 00:18:28.858 --> 00:18:32.038 Okay, a decade or so ago it was like five. 00:18:32.038 --> 00:18:36.628 Okay so there is knowledge there on, on what to do with autism, right? 00:18:36.748 --> 00:18:38.338 That's works for some people. 00:18:38.338 --> 00:18:43.228 Obviously not for everyone, but as a parent you want to know these. 00:18:43.973 --> 00:18:48.473 Options and then really assess, okay, is that, does that make sense for my child? 00:18:48.473 --> 00:18:50.483 Does, is that relevant for my child? 00:18:50.813 --> 00:18:52.338 And is that something we wanna do? 00:18:53.408 --> 00:18:56.858 Candace Dellacona: I love the fact too, that you're providing the guidance Dr. 00:18:56.858 --> 00:18:58.328 Lyons to these families. 00:18:58.328 --> 00:19:02.348 Because even with all of the hope what comes with hope and the 00:19:02.348 --> 00:19:04.898 possibilities are a lot of options. 00:19:05.593 --> 00:19:10.233 And options can feel really overwhelming and really noisy to those of us who don't 00:19:10.233 --> 00:19:15.063 have that background or don't have the ability to parse through the information. 00:19:15.063 --> 00:19:19.543 So having someone like you as almost a care navigator seems like a smart 00:19:19.603 --> 00:19:21.283 thing to do for a lot of families. 00:19:21.823 --> 00:19:26.903 Are there, do you see an uptick with these families looking for people like you to 00:19:26.903 --> 00:19:32.063 help them as their guide to this, what seems to be a pretty confusing process? 00:19:32.913 --> 00:19:32.914 Dr. Theresa Lyons: 00:19:32.913 --> 00:19:36.143 Yeah, parents are looking for quality information, for sure. 00:19:36.143 --> 00:19:41.173 So on, TikTok and a variety of different social media, there's snippets of 00:19:41.173 --> 00:19:45.073 parents showing, okay, this was my child and this is what we did, and 00:19:45.073 --> 00:19:47.653 this is what's changed, which is great. 00:19:47.953 --> 00:19:52.448 But the important part is to understand, is that to my child. 00:19:52.448 --> 00:19:54.818 So a lot of times parents see that and they're like, oh my 00:19:54.818 --> 00:19:56.378 gosh, okay, let me just try it. 00:19:56.598 --> 00:20:01.853 And if you just start trying things, that's when you don't put in full 00:20:01.853 --> 00:20:04.553 effort because you're like, I don't wanna get my hopes up because I don't 00:20:04.553 --> 00:20:05.843 know if this is gonna work for me. 00:20:05.843 --> 00:20:12.353 So the more you base your decisions in science, then the more, in many ways, hope 00:20:12.353 --> 00:20:18.533 you can have because there's logic wrapped around it, not just, random trying. 00:20:19.203 --> 00:20:20.733 So that's the really important part. 00:20:20.783 --> 00:20:23.723 There's a lot of different symptoms. 00:20:23.723 --> 00:20:28.373 There's a lot of different approaches that are really beneficial, but you've 00:20:28.373 --> 00:20:33.653 gotta align the approach and the therapy with the symptoms of the child. 00:20:33.653 --> 00:20:38.063 And that's why autism can seem so complex, because you can't do the same 00:20:38.063 --> 00:20:42.233 thing for one child to another child and get the exact same results because 00:20:42.503 --> 00:20:44.363 their body chemistry is different, right? 00:20:44.363 --> 00:20:47.108 So some kids have huge problems with the guts. 00:20:47.903 --> 00:20:48.983 Many kids, right? 00:20:49.043 --> 00:20:49.793 But not all. 00:20:50.093 --> 00:20:55.793 Some kids have problems with autoimmune antibodies in the brain, but not all. 00:20:55.843 --> 00:21:00.343 So that's where the, in many ways, tricky part comes from really 00:21:00.763 --> 00:21:04.183 understanding the symptoms of your child, and then making sure whatever 00:21:04.183 --> 00:21:06.853 you do is addressing those symptoms. 00:21:07.543 --> 00:21:10.543 Candace Dellacona: You speak to something that is so relevant, particularly 00:21:10.543 --> 00:21:13.403 now in the time that we are in. 00:21:13.933 --> 00:21:18.673 Trying to separate fact from fiction and the emphasis on 00:21:18.673 --> 00:21:20.893 science, which I so appreciate. 00:21:20.893 --> 00:21:26.563 You are one of the science warriors and you are out there making sure that the 00:21:26.563 --> 00:21:32.608 information that we receive is based on that science and to really follow the 00:21:32.608 --> 00:21:38.348 guide of professionals and not look to TikTok certainly for treatment options. 00:21:38.628 --> 00:21:43.188 I think that mediums like that are helpful maybe to get information 00:21:43.188 --> 00:21:49.113 out, but you do have to rely on the practitioners to advise you if this is 00:21:49.113 --> 00:21:54.753 relevant for your own child, because it's such a big body of research and it 00:21:54.753 --> 00:21:59.643 seems, from what I understand and how you've explained it, is that autism can 00:21:59.643 --> 00:22:02.673 manifest so differently, child to child. 00:22:03.333 --> 00:22:03.334 Dr. Theresa Lyons: 00:22:03.333 --> 00:22:08.533 Yeah so you have level one and level three and just to talk about the 00:22:08.533 --> 00:22:09.853 two ends of the spectrum, right? 00:22:09.853 --> 00:22:12.853 So level one is what used to be called Asperger's. 00:22:12.883 --> 00:22:14.953 So Asperger's is no longer a diagnosis. 00:22:15.193 --> 00:22:17.733 It's been rolled under an autism diagnosis. 00:22:18.003 --> 00:22:22.883 So that might be a child or a teenager or a young adult who can dress themselves, 00:22:22.883 --> 00:22:24.893 who can cook breakfast, right? 00:22:24.893 --> 00:22:27.083 Can walk across the street and go to school. 00:22:27.353 --> 00:22:30.713 But they might have problems with executive functioning and 00:22:30.713 --> 00:22:32.813 some other areas, conversations. 00:22:33.203 --> 00:22:36.953 Then you would have level three, which is someone who is more profoundly autistic. 00:22:36.953 --> 00:22:39.713 So they might not be able to dress themselves. 00:22:39.713 --> 00:22:41.783 They might not be able to bathe themselves. 00:22:42.143 --> 00:22:45.233 They might not be able to speak at all, but yet this is 00:22:45.233 --> 00:22:47.333 the same diagnosis of autism. 00:22:47.573 --> 00:22:51.413 So you really wanna make sure you understand what are the priorities 00:22:51.413 --> 00:22:57.318 and what is, what are the health barriers that that child is facing 00:22:57.438 --> 00:22:59.178 so that you can get very specific. 00:22:59.178 --> 00:23:03.858 You wouldn't do the same thing for both those kids and expect the same result. 00:23:04.423 --> 00:23:05.353 Candace Dellacona: Absolutely. 00:23:05.713 --> 00:23:10.223 And sort of segueing into being a sandwich generation member, some of what 00:23:10.223 --> 00:23:15.958 you've shared with me so far is that your daughter has this autism diagnosis 00:23:15.958 --> 00:23:19.918 and you've made your way through and you're looking to the horizon and 00:23:19.918 --> 00:23:22.108 thinking about your own aging parents. 00:23:22.528 --> 00:23:28.948 And so for those of us in the middle, how do you best navigate that piece 00:23:28.948 --> 00:23:34.508 when you have a differently needed child or children and your aging 00:23:34.508 --> 00:23:38.588 parents, what is your best advice for those of us who are dealing with both 00:23:38.588 --> 00:23:40.058 ends of the spectrum, if you will? 00:23:41.348 --> 00:23:41.349 Dr. Theresa Lyons: 00:23:41.348 --> 00:23:44.618 I would say definitely to stay grounded with yourself first. 00:23:44.648 --> 00:23:50.468 You can't help either of them well if you're stressed out and you have 00:23:50.468 --> 00:23:52.028 emotional dysregulation, right? 00:23:52.028 --> 00:23:53.138 You have no patience. 00:23:53.468 --> 00:23:56.978 If there's a problem with either that, it's just, oh my goodness. 00:23:56.978 --> 00:23:58.988 And it feels the pressure and the overwhelm. 00:23:59.288 --> 00:24:06.308 So really having focus on yourself, and it sounds so cliche, self-care. 00:24:07.018 --> 00:24:08.038 It's not. 00:24:08.153 --> 00:24:12.663 I remember there were times when I was just exhausted and really at the end of 00:24:12.663 --> 00:24:17.398 my rope and, something great happened with my daughter and it was like, I 00:24:17.398 --> 00:24:19.618 couldn't even fully appreciate it, right? 00:24:19.618 --> 00:24:22.768 Because I was so drained. 00:24:22.888 --> 00:24:28.078 And so if I can't appreciate the good things, then, I obviously was not handling 00:24:28.078 --> 00:24:29.968 the bad things as well as I could have. 00:24:30.268 --> 00:24:34.778 So really being able to check in with your own bias, okay, how am I sleeping? 00:24:34.838 --> 00:24:38.018 And I know sleeping may be difficult when there might be crisis during 00:24:38.018 --> 00:24:39.998 the night as to something's going on. 00:24:40.368 --> 00:24:45.418 But, really making sure you get sleep is important so that your brain 00:24:45.418 --> 00:24:49.048 can actually function and be able to make those decisions and quick 00:24:49.048 --> 00:24:52.738 decisions and see different angles and see different perspectives. 00:24:53.098 --> 00:24:57.628 So really starting there is the only way to do it so that you 00:24:57.958 --> 00:25:01.108 bring yourself like your best self to either of those situations. 00:25:01.963 --> 00:25:05.143 Candace Dellacona: I think that's great advice and I think that, recognizing 00:25:05.173 --> 00:25:07.818 our own limits and as you point out. 00:25:08.283 --> 00:25:11.613 You can't be your best self if you're not running on sleep and 00:25:11.613 --> 00:25:15.813 you're being forced to make these decisions, that can be quite difficult. 00:25:16.173 --> 00:25:19.893 One of the things that I love that you mentioned too, is this identity shift. 00:25:20.293 --> 00:25:26.628 And looking at a parent of a differently abled or differently needed child and the 00:25:26.628 --> 00:25:33.368 daughter of, or the child of aging parents and trying to toggle between those two. 00:25:33.778 --> 00:25:37.198 So obviously you want to take care of yourself, but 00:25:37.888 --> 00:25:40.078 trying to prioritize the two. 00:25:40.108 --> 00:25:44.528 Do you have any advice with respect to that other than the standard? 00:25:44.528 --> 00:25:47.828 Where I say delegate, we have to ask for help and delegate. 00:25:47.938 --> 00:25:47.939 Dr. Theresa Lyons: 00:25:47.938 --> 00:25:53.068 Definitely delegate, but I think it's forming those bonds right with, because 00:25:53.068 --> 00:25:58.433 I know many times with delegating, I feel like I should be there and 00:25:58.433 --> 00:26:01.703 then there ends up being like guilt feeling and I'm not doing a good job. 00:26:01.703 --> 00:26:05.453 Like you can really start to, to spin in a negative way in your own 00:26:05.453 --> 00:26:09.113 head when you start delegating, even when it's supposed to be helpful. 00:26:09.383 --> 00:26:15.193 So I always think it's good to have conversations with either as to what 00:26:15.193 --> 00:26:17.528 is really meaningful help for you. 00:26:17.828 --> 00:26:21.938 So I know with my parents you know what is really meaningful for 00:26:21.938 --> 00:26:23.928 them is, quality time with them. 00:26:24.198 --> 00:26:28.878 And so when I'm trying to prioritize what to do, when I get to spend time with 00:26:28.878 --> 00:26:33.228 them, and now we take vacations in the summer and the entire family gets together 00:26:33.228 --> 00:26:36.828 because we know this is important, right? 00:26:36.828 --> 00:26:42.178 So we all of us adult kids have busy lives and we all have so many things going on, 00:26:42.178 --> 00:26:47.288 but we do our best to prioritize that time so that we have those memories and 00:26:47.288 --> 00:26:49.688 those good places to, to make decisions. 00:26:50.018 --> 00:26:51.368 And same with our kids. 00:26:51.398 --> 00:26:55.628 Even though right, even a child with autism that's not speaking, 00:26:55.958 --> 00:26:59.828 we can really start to understand their love languages, right? 00:26:59.828 --> 00:27:01.988 Believe it or not, kids have love languages. 00:27:02.383 --> 00:27:05.533 And if they're not talking, you can still figure out what's 00:27:05.533 --> 00:27:06.973 the best way to bond with them. 00:27:07.043 --> 00:27:11.153 So for a child who, let's say you know, gifts is something really 00:27:11.153 --> 00:27:12.953 important, that's good to know. 00:27:12.953 --> 00:27:18.773 So that maybe you can delegate a certain aspect of their care, but then, oh, they 00:27:18.773 --> 00:27:23.103 love gifts, so let me just go buy, a $2 fidget toy or something that they like. 00:27:23.343 --> 00:27:27.668 So that you still know that what you're doing is meaningful to 00:27:27.668 --> 00:27:33.188 them, and I think that's the really important way to help delegation 00:27:33.188 --> 00:27:36.458 feel like not like you don't care. 00:27:36.858 --> 00:27:37.398 Candace Dellacona: Yeah. 00:27:37.428 --> 00:27:37.788 Yeah. 00:27:37.798 --> 00:27:41.518 And also giving other people the opportunity to love up your child, right? 00:27:41.568 --> 00:27:41.569 Dr. Theresa Lyons: 00:27:41.568 --> 00:27:41.958 Definitely. 00:27:42.718 --> 00:27:45.113 Candace Dellacona: And especially when you have a diagnosis of 00:27:45.113 --> 00:27:47.123 autism that can be complicated. 00:27:47.423 --> 00:27:50.423 And so perhaps what to do isn't intuitive. 00:27:50.423 --> 00:27:57.533 So bringing others into that world to share what might work best for your child, 00:27:57.533 --> 00:28:02.303 your empowering the grandparents, or the aunts and the uncles to have that bond 00:28:02.303 --> 00:28:04.373 and share that bond with your child. 00:28:04.638 --> 00:28:08.508 Who, like any child, wants to be connected to their grandparents, 00:28:08.508 --> 00:28:10.038 their aunts, their uncles and cousins. 00:28:10.038 --> 00:28:12.258 So that opportunity I think is great. 00:28:12.258 --> 00:28:17.298 I also love what you'd said in the past about, celebrating those victories that 00:28:17.298 --> 00:28:22.608 may not look like others victories and the small things, and not losing sight of 00:28:22.608 --> 00:28:25.128 progress that can be made along the way. 00:28:25.748 --> 00:28:25.749 Dr. Theresa Lyons: 00:28:25.748 --> 00:28:27.428 Yeah, it's really important. 00:28:27.938 --> 00:28:32.933 Just for so many reasons, and especially with the people who 00:28:32.933 --> 00:28:34.523 have supported you along the way. 00:28:34.523 --> 00:28:39.053 So when you have a child with autism and they're developing differently, you 00:28:39.053 --> 00:28:43.073 want to have that supportive family so that you could go to your parents and 00:28:43.073 --> 00:28:48.253 say, oh, thanks for, taking John to school one day a week so that I could, 00:28:48.253 --> 00:28:53.053 do X, Y, Z, because now look, look, things are changing and you really start 00:28:53.053 --> 00:28:55.393 to build that support team around you. 00:28:55.753 --> 00:29:00.733 And hopefully you could have conversations with your parents as 00:29:00.733 --> 00:29:03.013 to, okay, I'm a little overwhelmed. 00:29:03.013 --> 00:29:06.588 It would be really helpful if you could do X, Y, Z. 00:29:06.618 --> 00:29:11.448 This way then the parent, the grandparent isn't trying to do something and be 00:29:11.448 --> 00:29:14.538 helpful and then you kind of resist that. 00:29:14.588 --> 00:29:18.968 Sometimes we, we love each other so much, we just get a little, a little 00:29:18.968 --> 00:29:21.988 tangled in, in what is helpful. 00:29:22.678 --> 00:29:28.048 So clear communication is really important when you're in this kind of stressful 00:29:28.048 --> 00:29:32.338 situation so that you can say, this will be helpful for me, or it won't be helpful 00:29:32.338 --> 00:29:36.868 for me, and then that person will wanna give you more 'cause then it's easier 00:29:36.868 --> 00:29:39.068 to receive help that really is worth it. 00:29:39.703 --> 00:29:41.058 Candace Dellacona: It really is, and Dr. 00:29:41.058 --> 00:29:45.063 Lyons, I can't thank you enough for being here and sharing 00:29:45.063 --> 00:29:47.173 with us, Navigating AWEtism. 00:29:47.193 --> 00:29:52.263 And for those listeners it's spelled like awe in awe, awe, which I love. 00:29:53.013 --> 00:29:59.648 And I hope that those of you out there who have a special needs child or who 00:29:59.648 --> 00:30:02.738 loves someone who does, will look to Dr. 00:30:02.738 --> 00:30:06.968 Lyon's latest book that hopefully will come out soon, as you 00:30:06.968 --> 00:30:09.008 said, with updated resources. 00:30:09.803 --> 00:30:13.703 And we are grateful to have you here and to shed a little light on 00:30:13.703 --> 00:30:17.903 how best to navigate the in-between when you love someone with autism. 00:30:17.903 --> 00:30:19.298 So thank you so much Dr. 00:30:19.298 --> 00:30:20.363 Lyons, for being here. 00:30:20.783 --> 00:30:20.784 Dr. Theresa Lyons: 00:30:20.783 --> 00:30:21.323 My pleasure. 00:30:21.323 --> 00:30:22.253 Thank you for having me.