How to talk about #ELOPEMENT in #SYNGAP1 with Schools, Judges & Police Officers. #S10e178

Monday, August 18th, 2025. Week 34.

Tony (11, M) Story. Now we sleep with the alarm on every night.

Elopement:
involves leaving a safe or supervised area without permission.
poses a risk to the individual’s safety.
can occur in various settings.
is a common behavior in individuals with ASD.
Virginie (10, M) Stories and Service Dog.

Single Mom (9, M) heading to the judge and calls me asking for papers. Here you go…

Let’s note that Elopement was masked behind broader buckets and I think this is a miss. We need to name and discuss this very challenging behavior.

FB Survey. 4 hours. 100+ votes, 100 comments
76% of respondents eloped (35% F, 41% M)
24% didn’t (17% F, 7% M)

11 F, no elopement at home – but sometimes tries to elope while at school.
C ( has always been an eloper – kid has a sixth sense for when someone leaves the door unlocked
C elopes and age 16 years old
H 9 girl constantly running away
B-7.5 years old
Girl – 3
Fourteen. She doesn’t anymore, but used to. Not to the degree that other families struggle, but we definitely had to keep an extra close eye/ear. Had bells on all our doors, etc. Did get a call from our neighbor once while I was making dinner saying that S had just walked into her house, that she was safe, and was helping to give their baby a bath. Thankfully they were very good friends and took it in stride. (S was about four at the time.)
Boys age 7. He has for awhile
Boy, age 8.5. Just started eloping more so recently, in the last year.
11, girl
Boy age 15
13 year old girl
Girl-3
Ty 10 elopes since he can walk. It’s our biggest problem.
Boy age 8 but has been doing it for a while
Age 7, girl.
Boy – 14y/o
Boy age 9… he’s a track star!
Boy age 12, has eloped since he could walk/run. It probably peaked around age 6 and got better with meds. Elopement is less frequent now but scarier now that he’s older and higher.
Boy 10. Always has wandered and will still now run off knowing he’s not suppose to
Any chance he gets 13
My boy (22 y/o) always was and is now a master of escape, he can hear if I turn the key in the door, front door has an alarm fitted just in case
Boy , 25 the risk is high because he looks typical
25 yo female, requiring alarms, cameras,and specialized door locks. In a state that says that these measures are unlawful restraint and invasion of privacy

Frazier, 2025. Extremely High finding as a Symptom of SYNGAP1. See Table 2 of Quantifying neurobehavioral profiles across neurodevelopmental genetic syndromes and idiopathic neurodevelopmental disorders

McKee, 2025. Notes the significantly heightened enrichment of Autistic Behavior and Behavioral Abnormality vs. Rett, Angelman or Epilepsy cohorts. See Figure 2B of Clinical signatures of SYNGAP1-related disorders through data integration.

Cunnanne, notes impulsivity (which is a euphemism for elopement if I have ever heard one) and has three quotes in Table 1 (see below), but also notes in Figure 2 that both ASD and lack of danger awareness came up in almost every interview. See SYNGAP1-Related Intellectual Disability: Meaningful Clinical Outcomes and Development of a Disease Concept Model Draft.

Impulsivity quotes:

Runs toward streets – “He wouldn’t stop himself from running into the road. He climbs things in that house that you’re like‘oh my god, how are you going to get out of that?’”
Jumps into pools – “He would walk into a pond. We were at the pool the other day…and he
just walked off the edge and just fell into the water and was like… he would have just drowned.”
Runs toward crowds – “She was a bolter. So that was always scary. We had a few scares where you look away for a moment, I mean, we always had somebody with her, but it could be a moment’s time and it’s like where’d you go, you thought she was right there.”

FUNDRAISING
3 events in 3 states…
Gala for SYNGAP1 August 22, 2025 – Farmingdale, NJ cureSYNGAP1.org/Gala5
Beacon of Hope September 12, 2025 – Boston, MA cureSYNGAP1.org/Beacon25
Scramble for SYNGAP October 4, 2025 – Greer, SC cureSYNGAP1.org/Scramble

Also, Conference is in 107 Days
https://curesyngap1.org/calendar/cure-syngap1-conference-2025-hosted-by-srf/

STUDIES – MATTER
https://docs.google.com/presentation/d/1yRPHMRY3pXPgbOacDM9Sr906VejdJWsonUWvqRD9VVI/edit?usp=sharing

Pubmed is at 37 (One a week!)
https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2025-2025&timeline=expanded&sort=date&sort_order=asc

Episode 178 of #Syngap10

#Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS

Below is a transcript from the video:

Mike Graglia

[00:00:00] Hello Syngap land, my name is Mike Graglia, and this is episode 178 of the Cure Syngap1 podcast. Today I want to talk about elopement. What is elopement? Elopement is when a child, normally with autism, runs away or just leaves, or just goes somewhere they don’t have permission to go, or because they never asked for permission and, frankly, don’t care. It may be unsafe. It could happen in many different places. And it’s just not good. And this has been an issue for me with Tony. In the early years, he eloped a lot as a kid. He’d just bolt all the time if we didn’t have hands on him. In fact, when we got him a service dog, one of the reasons we got the service dog was so the dog was physically tethered to Tony. And this dog was trained to sit down when Tony ran away. Trouble with Tony. He figured out how to get untethered, so that stopped working. And he hasn’t eloped much in recent years, but just let me tell you a funny story. So a couple weeks, a couple weeks ago. Ash and I are tired because we do too much, and we’d been up late trying to put Tony to sleep, and at 5:30 in the morning, our bedroom door is thrown open, and there’s Tony standing there. And he’s like, ‘Where’s the nanny?’ And we were like, ‘The nanny’s not here, dude.’ The nanny went home yesterday, and it’s 5:30 in the morning. Go watch TV. Which is what he normally does. He normally gets up super early and he just turns on the TV. So we’re like, all right. So we’re sort of like lying in bed. We’re like, all right, let’s get up. I get up, 6 o’clock. No, Tony. We go up to his room. I’m like, oh, I must be in his room. I start making coffee. Ashley comes out. She’s like, where’s Tony? I’m like, probably in his room. Ashley goes, she’s not. She’s like, he’s not in his room. I’m like, oh, man. We go outside, we look for him, we look in the backyard, we look around the house, we’re like, oh no. Ashley goes into mom mode. She starts running down the street. I’m standing at home like. Where is he? Then the police pull up. You, Mike, I’m Mike. Tony’s at the corner of whatever and whatever. I’m like, what’s he doing there? Call out, get in the car, get Ashley, drive over to the corner of whatever and whatever, and there’s two police cars, two fire trucks, and a bunch of firemen and policemen standing in a circle like, what do we do? And I get out and they’re like, you, Mike? I’m like, I’m Mike. And they all look at the back of the police car. It’s sitting in the back of the police car. Draped in a blue fleece, you know, one of these emergency blanket thingies. It’s Tony. Playing on his iPad. I wanted to hug him, hit him, and cry all at the same time. I was like, ‘Dude.’ So I’m like, ‘Tony, let’s go home.’ Tony stands up. The blanket falls off and I realize, A, he is completely naked. And B. His back is a little dirty, if you know what I mean. And so we wrap the blanket around him. We get him in the car. We take him home. Police come. They walk in the house. They’re like, ‘So Tony’s like, ‘I don’t want to be here anymore.’ And he runs away. I’m like, ‘Great, looks like I’m beating this kid up.’ But I’m not, I swear it, guys. It was really, and the officers were very polite and thoughtful and they asked a lot of questions. And then they came back like a week later, and they were like, ‘Look, we understand what’s happened. We’ve done some research on Syngap. We don’t think you’ve done anything wrong. We did have to call Child Protective Services because this was weird.’ But because, basically, what had happened is Tony had had a funny tummy. The night before, he’d probably eaten something. We didn’t know that. He woke up. He soiled himself. To his credit, he tried to clean himself up because we found various clothes and things in different bathrooms. Didn’t work. He wanted help. Comes to our bedroom. Didn’t say he wanted help.’ He just, where’s the nanny. There you go. And then he bolted, which he hadn’t done in a long time. And we were like, ‘Whoa.’ But can you imagine you’re having your morning coffee and you look up and there’s an 11-year-old male, buck naked, walking down the street, playing with his iPad. So someone called the police, thank goodness. And this really shook me. I got to tell you, I had some meetings that morning that did not go well because I was terrified, A, of what could have happened to Tony, and B, because now we had to deal with the police department, which is always unsettling. Really good guys. There’s no reason it should be unsettling, but it was just like, ‘oh my gosh,’ I barely have control here. And I ended up getting on the phone with Virginie, which was a fascinating conversation because she had had very similar challenges with Ty. Her child, Ty, also has a service dog for elopement. They’re still tethered. And in Virginia’s own words, I have her permission to use her name and Ty’s name here. If they didn’t have a service dog, Ty probably wouldn’t be alive. I mean, she told me about times when Ty has escaped on vacation. In freezing cold weather, where she lives. And he’s been found on train tracks. He’s been found heading toward busy streets. He’s been found by neighbors. He’s been in various states of dress or undress or in pajamas or whatever. And Virginie’s own words, you know, if we didn’t have this dog. Ty probably wouldn’t be alive. Like, indeed, he’s not even allowed to go to school without the dog because the dog stops him from eloping. So this has been on my mind for a couple weeks, and then this morning I wake up to a phone call from one of our parents. Relevant details, single mom. So this lady is raising a Syngapian. And for reference, Tony is 11, Ty is 10. fiitting neatly into the storyline, this mom’s son is nine. And she calls me up and she was like, ‘I need help.’ I need help. And I was like, ‘Well, what’s going on?’ And she says, ‘You know, he eloped and I got a ticket. ‘I’m like, ‘You got a ticket.’ Yeah, she’s like, ‘I got to go before a judge and explain what happened.’ And I need to know how to explain Syngap to a judge. And I was like, ‘Wow.’ And the story she told me was just bang on. She’s like, ‘I was with him. I fell asleep.’ Single mom, why is it relevant? This poor lady’s raising a kid by herself and she’s not getting the right level of support from the state or the school district. From what I can tell from the stories I’ve been told, both the school district and the state services have failed this mom at pretty much every turn. And so, but this lady is just, Amazonian level warrior mom. She’s just fighting, fighting, fighting. She’s got two other kids. And she’s like, ‘I was tired.’ One night I fell asleep with Wally and I fell asleep next to him. I’m like, every single parent passes out next to their child because they’re so damn tired. And she’s like, ‘He woke up. He realized the door wasn’t locked. He bolted.’ She’s like, ‘I’m human, I make mistakes. I was like. ‘Babe, you don’t have to explain to me. You don’t have to tell me your baby. It’s not a mistake.’ These kids are hard. These kids, they all elope. And I called Virginie and I said, ‘Well, I think I’m going to do a podcast about it.’ That’s when she told me. She’s like, ‘Yeah, you can use my name.’ Talk about Ty. And then I was like, ‘It’s interesting, they’re all boys.’ So I did a Facebook survey about four hours ago. I got on Facebook. I was like, ‘Hey guys, I want to talk about elopement.’ But all the stories I know about boys. Do your kids elope and are they male or female? In four hours, I got 100 responses, over 100 responses. In fact, they’re still pouring in. As I was writing these notes, it went up to 111. But 76% of respondents said their kids eloped. And that was 35%, 35 of that 76 was female and 41 of that 76 was male so a little more males but pretty much 50-50. And then, you know, if you do basic math, 24% didn’t elope, 17% female, 7% male. What does that tell us? Well, it tells us it’s a Syngapian thing. And so why is one of four not a low pick? Well, there’s a lot of reasons they’re not a low pick. Some of our more severe kids have major motor issues. They just physically can’t elope. Right if they don’t walk very well, if they have major gait issues, that’s not happening. Some of our kids are on serious, serious sedentary sedating meds. They’re not a little bit. But I think with 76% of respondents saying, ‘Oh yeah, they elope.’ And then let me read you some of these comments.. And I’ve cut out all the names: 11 female, no elopement at home, but sometimes tries to elope at school. C has never been an eloper. C has always been an eloper. The kid has a sixth sense for when someone leaves the door unlocked. Amen to that, sister. Other C elopes: age 16. H, N, girl, constantly running away. B, seven and a half. Girl, four, 14. She doesn’t anymore, but used to. Not the degree to which other families struggle, but we definitely had to keep an extra close eye on them. Had bells on our doors. Did get a call from our neighbor once when I was making dinner, saying that S had just walked into her house, that she was safe and was helping to give their baby a bath. Thankfully, they were good friends and took it in stride. S was about four at the time. Boy, 7. Has for a while. Boy, 8. 5. Just started eloping. 11, girl. Boy, 15. 13, girl. Girl, 3. Ty, this is Virginie. 10, elopes and seeks him walk. Our biggest problem. Boy, 8. Been doing it for a while. Age, 7. Girl. Boy, 14. Boy, 9. He’s a track star. Happy face. I love the happy faces, people. Boy, age 12 has eloped since he could walk run. Probably peaked around age six and got better with meds. Boy, 10 has always wandered and will. Still now run off, knowing he’s not supposed to. Any chance he gets, 13. My boy, 22, was and is now a master of escape. Can hear if I turn a key in a door, front door has alarm fitted just in case. Boy, 25, risk is high because he looks typical. 25-year-old female requiring alarms, cameras, and specialized locked doors in a state that says these measures are unlawful restraint and an invasion of privacy. I mean, give me a break. So yeah, it’s an issue. It’s an issue from all ages. And both genders. And I don’t know why we don’t talk more about it. And so I went to the literature because the single mom called me and said, ‘I need, I’m going before a judge. I need to explain Syngap to them.’ What do I say? So I was like, ‘All right, let’s figure it out.’ So I went to the literature and I looked at a few papers and actually the word ‘elopement.’ Doesn’t appear very much. And I’m going to share three papers with you. And I’m doing this and all this is detailed in the show notes. So for that mom, hopefully these show notes are helpful. For the next parent who’s got to talk to a police officer, I hope these show notes are helpful. I will be forwarding this podcast to my very own police officer and be like, ‘Hey, man. It’s great to see you the other day.’ They did a podcast about our conversation. Please check it out. But check this out. So Fraser in 2025 wrote a paper called ‘Quantifying Neurobehavioral Profiles Across Neurodevelopmental Genetic Syndromes and Idiopathic Neurodevelopmental Disorders.’ Idiopathic just means we don’t know where it came from. So it would be the opposite of Syngap. You have a kid with Syngap1, you know the problems are because of Syngap1. If you have a child with idiopathic neurodevelopmental disorders, like the kid’s got neurodevelopmental, you don’t know which gene is affected. But anyway. In that, Dr. Frazier does some amazing work. The sample size for Syngap was about 47 patients, call it 50. And in Table 2, they list elopement as an extremely high and constant issue for Syngap. And that’s a peer-reviewed scientific paper from Dr. Tom Frazier. Excellent guy. Links in the show notes. McKee, now it gets interesting. McKee 2025 in a classic paper, you know, clinical signatures of SYNGAP1-related disorders through data integration. It looks at Syngap and tries to describe Syngap looking at the data set they have at CHOP. The citizen data set and claims data. And there’s not a lot in there. The word elopement doesn’t appear there, which is, it’s not a shortcoming because the purpose of the paper is to look at the clinical signature. What do they look like in clinic? Well, they try to run out of the clinic. So maybe the doctors should be noting this in the records. Hey, I had a, when I take my kid to see a neurologist in a neurologist’s office, they’re out the door like five times. Like I do, I’ve done laps around Stanford. I’ve done laps around UCSF. I’ve done laps. Around Baylor, I’ve done labs around Hopkins, USC, now that I think about it, I should get like a little patches for every major medical institution in America that I’ve chased Tony through. The funniest time, we’re in USC in a lab, and Tony just decides to run for it, right? So he bolts, and these labs are, lab space is precious, so these labs are right next to each other. There’s this very serious postdoc doing something to some poor mouse, probably bisecting his brain, and Tony just runs right down the hall behind her, and she looks up. And I’m running after Tony, sorry. Anyway, this is funny at the time. So the point is, these kids elope, but it’s not showing up in that paper, which means the doctors are not writing ‘elope down.’ Why? Maybe they’re just all their kids elope. Or Maybe they just don’t think of elopement as an issue. Maybe they think elopement is a combination of an autistic phenotype, a behavioral abnormality, and impulsivity. Which I think is an issue, that’s an issue, because we need to talk about elopement. Elopement is how children end up on train tracks, how children end up running into freeways, how children end up. Actually, Tony, we were at the beach years ago. He was with a nanny who didn’t make it past that day. And she said, ‘Where’s Tony?’ And we’re like, ‘She’s with you.’ No, he’s not. And we were staying at a house just a few blocks from the beach. And we both, Ashley’s running up and down the beach. I’m driving around. We got, we told the Coast Guard. We told the police. We had people all over town looking for Tony. And back then it was a pre-service dog, but we had this amazing German shepherd and Tony was found by someone sitting down the ground. If not naked, not wearing much. With the German Shepherd right next to him, keeping him safe, but he was sitting right next to the one. I mean, he was like one basketball court away from the one and with constant traffic. He would not have made it across that street. So, elopement is scary and kids can get hurt. And apparently, parents can get citations. In states that do nothing to help kids with Syngap, so but let me stay on point. The point is when I went to some of the best papers we’ve got, I only found the word ‘elopement’ in one paper, and that was written by Tom Frazier. And Tom Frazier understands autism because he is a serious autism expert. I won’t read you his resume, but it’s exceptional. So even in McKee, While we didn’t hear the word ‘elopement,’ she did note that Syngap, as compared to other major neurodevelopmental diseases, Rett, Angelman, had him significantly higher. Take a look at figure 2B. Significantly higher autistic behavior and behavioral abnormality. So this is a Syngap thing. And then I went to Cunane. Cunane wrote the DCM draft that I’ve spoken about before. We are working on another DCM, by the way, that I think will build on Cunane and will include elopement because I’m involved in it. In Cunane, she notes impulsivity. And actually, when you look at the quotes, which I’m going to read to you in a second about impulsivity, it’s all a little, right? I just think it’s the wrong word. I mean, to say, ‘oh, our kids are, I’m impulsive.’ Right? I say things I probably shouldn’t say. I occasionally get irritated with people. I tell people what I, I’m impulsive. And so far, I haven’t been diagnosed with any major neurodevelopmental diseases. There’s still time. This is not impulsivity. I don’t think this should be called impulsivity. I think it should be called elopement, right? It’s a much more significant finding. In my humble opinion, I’m not a doctor. It doesn’t matter. But she has three quotes in table one, and table one of Cunane is exceptional. We should also read it. She also notes in another figure that both autism spectrum disorder and lack of danger awareness, yet another. Slightly better euphemism for elopement. Came up in almost every interview. Came up in almost every interview. And the paper, if you’re looking forward to it, is Syngap1-Related Intellectual Disability, Meaningful Clinical Outcomes, and Development of a Disease Concept Model Draft. If that doesn’t put you to sleep, I mean, it’s crazy what we call these things. Links in the show notes. Good paper. If you can’t get through the paywalls to get to these papers, email me. I will send you the paper. Pretty sure I’m allowed to do that. I hope I am. Whatever. It doesn’t matter. Let me read you the quotes from Cunane. Impulsivity quotes. Quote one, runs towards streets. He wouldn’t stop himself from running into the road. He climbs things in the house that you’re like, ‘Oh my God, how are you going to get off that?’ He wouldn’t stop himself from running into the road, jumps into pools. He would walk into a pond. He would walk into a pool. We were at the pool the other day and he just walked off the edge and just fell into the water and was like. He would have drowned. Last quote, runs towards crowds. She was a bolter. So that was always scary. We had a few scares. When you look away for a moment, I mean, we always had somebody with her, but it could be a moment’s time and it’s like, where’d you go? You thought she was right there. That’s exactly what happened with Tony at the beach a few years ago. Where’s Tony? I mean, I still fired the nanny, but like. In fairness. Could happen to anyone. It was pretty slow. It doesn’t matter. Point is elopement is a serious issue. And every parent out there who is talking to a school district, a police officer, or a judge, apparently, this one friend. I want you to have this podcast and these papers at the ready, and I want you to be able to explain that this is a significant Syngapian thing. Your child has a disease through no fault of their own or no fault of your own. And elopement is part of what happens to kids with this disease. All right. Elopement lecture complete. If you have had enough, you can stop now. Let me just talk quickly. We have three fundraisers coming up at the end of this week, August 22nd. The gala for Syngap1 is happening in Jersey. It’s going to be great. Beacon of Hope, September 12th in Boston. I will be there. Scramble for Syngap, October 4th in Greer, South Carolina, assuming there is still Carolina left after the current hurricane. Please go to those. Please support us. Please help us raise money. On the scientific side, we have so many exciting grants rolling in, grant proposals. And we’re saying no to a lot. We just don’t have the money. We’re saying no to some really cool stuff, but we’re saying yes to the coolest stuff. And we need money to say to more, say yes to more. So please support those fundraisers, support the fund. I know times are crazy, but our kids are sick and we got to help them. And the way we help them is through better science. The conference is in 107 days. Help yourself. Come to it. It’s important to connect with families. There’s a bunch of studies, links in the show notes. PUBMed, by the way, is at 37 publications for Syngap1 this year, which is a big jump. We are in week, I should have said this at the top, 34. So we are currently three publications above our weeks, which means we’re on track. To be north of 54 for the year if we keep this up. Why does that matter? Well, that would be a bigger year than last year, and that matters. We have a biobank. Please share samples. You can do that if you’re coming to the conference. If you’re not a volunteer with Syngap Research Fund, please come and volunteer. We have so much work to do. Make sure you’re following us, supporting us, liking us. On LinkedIn, YouTube, Twitter, all the things. The links are in the show notes. If you’re newly diagnosed, we have a new family webinar on September 9th. Come to it. Ask any questions you want. Meet Virginie, she’s great. Links in the show notes. We have resources, links in the show notes. This is a podcast. Podcasts get seen by more people. If they have high ratings, please give this five stars wherever you listen, Sonos, Spotify, Amazon, Apple, whatever, and let people know that this is worth their time. Thank you for listening. Good luck with your eloping Syngapians, and to our friends who are dealing with law enforcement, myself included. Best of luck. Have a great week.