Dr. Greg Fritz (Host 1): Welcome to Mindcast, a podcast from the children's mental health experts at Bradley Hospital. I'm Dr. Greg Fritz, here with my co host, Dr. Tanuja Gandhi. And we're talking today with Ariana DeAngelis from The Autism Project. Ariana's role at The Autism Project is to head a team that delivers education and training to people who are caring for those diagnosed with autism, both nationally and internationally. Glad to have you here today.

Ariana DeAngelis: So glad to be here. Thank you.

Dr. Tanuja Gandhi (Host 2): Welcome, Ariana. Great to meet you. Your colleague connected us and we are so pleased to have you here with us today.

Ariana DeAngelis: Thank you. I'm honored to be here and excited to talk to both of you.

Host 2: So, we are in the middle of summer, and this topic is particularly relevant to a lot of kids who have been diagnosed with autism and are dealing with the transitions of summer months. Because as the weather warms up, everybody wants to be near water, be it in a swimming pool or near the ocean. And there are particular challenges that come with being near the water for children who have autism. So, I'm hoping that today we could talk about these challenges, transitions, and help our listeners and families get some ideas and tips on how to manage them better.

Ariana DeAngelis: Absolutely. And I'm happy to talk about it. And I've mentioned to many people, this is a particular passion of mine for two reasons. One, because I'm so immersed in the autism community in general, and two, because I have both personal and professional experience with autistic children who elope. And so, for those listeners who aren't familiar with the term elopement, a more familiar term would be wandering. A child who leaves a safe area and oftentimes, in autism, goes towards water, just as you mentioned, Dr. Gandhi.

So, two things here to think about. The first is just the general transition into the summer months. School is either ending for the child or they're moving into an extended school year program that may look different from what they're used to day to day. As I'm sure you've spoken about before, predictability and routine is extraordinarily important for so many autistic children. And so, having this break in routine can cause an extraordinary amount of anxiety for the child. And as a result of that, an extraordinary challenge for the families as well.

So, the first thing to think about for families is how do we create a routine over the summer? How do we make this unstructured time that we suddenly have into something predictable? Using visuals, using a daily schedule for the child, even in those off months. And then, as families move more towards different summer activities, going to the beach, going to the pool, we have to consider the elopement component. Many, many autistic children who elope do go towards water. So when we're thinking about how we address elopement, we have to consider, yes, how we support the family, how we give the family tips on how to prevent elopement, but it's really a whole community that needs to surround that family and support that family.

Elopement is such a challenge for so many families and requires such hypervigilance on the part of the family to make sure that their child's not leaving that safe area, to make sure that their child's always safe. So, bringing in friends, neighbors and first responders, all to work towards keeping this child safe is extraordinarily important.

Host 1: So, let's get concrete here. What should a family do if they lose track of their child?

Ariana DeAngelis: Step one, call 911. Don't wait. A lot of families, as soon as they don't see that their child is where they expected their child to be, they'll start looking on their own first. Maybe they're in the bedroom, maybe they're in the closet, maybe they're in the backyard. Those few moments can make such a huge difference. If you call 911 and then you end up finding your child in the kitchen under the sink, then you can cancel that call or you can tell those first responders when they arrive, "Never mind, our child is safe." But if you're waiting, and you wait to make that call until you've done your own search, you've lost precious time.

So, the first thing to do is call 911, let the dispatcher know that your child is autistic. And let that dispatcher know to let the first responders who are responding know that information and start looking in bodies of water. And when I do say bodies of water, I mean rivers, streams, lakes, pools, water tanks, even standing water. So here in Rhode Island, we've had a lot of flooding lately, unfortunately. Check those deeper puddles, check any areas where water has congregated before looking anywhere else.

Host 2: So, is there something different about children who have autism? I think I'm wondering why are they drawn to water? Is there something different that we should be aware of?

Ariana DeAngelis: Absolutely. Thank you for asking that question. So, one of the components of the autism diagnosis, as I know you all know, is this change or difference in the way that they perceive their sensory environment. So when we're thinking about the experience of being in water, there are so many different components of our sensory worlds that can change. The way that water feels on our skin, the buoyancy, the feeling of floating. For children who are underresponsive in their muscles and joints, who are seeking pressure a lot of times, when they're in the water and they're able to move their arms back and forth, the water is putting this beautiful pressure on their bodies that feels incredible.

One of my colleague's son likes to go to the bottom of a pool and look up at the sky through the surface of the water. And that experience for the children who really enjoy it is extraordinary, this extraordinary sensory experience. Potentially, depending on the child, without the awareness of the safety hazard of doing that, without the sensation of "I'm not safe, I don't know how to swim, I need to wait for an adult," may not be there.

Host 2: So, what I'm hearing is children with autism might be particularly drawn to water. Not all of them, but a lot of them might be.

Ariana DeAngelis: Many, absolutely. And this is a difficult statistic to talk about, but I think it's important is that in lethal incidences of elopement, where someone passes away, over 70% are caused by drowning. And next, we would look into traffic accidents and things of that nature, exposure. But that's why we say start with water first and then go from there.

Host 1: So, a lot of parents of autistic kids are kind of overwhelmed already. I mean, it's a handful at best and really a challenge often. What kind of things can be done to empower the parents or help them out, for instance, to have them be able to prevent an elopement.

Ariana DeAngelis: Absolutely. So, there are a couple of different things, and as I had mentioned, just to sort of reiterate it, don't go it alone. This is not a job for one person or for one couple to be constantly, 24/7 vigilant. Make sure that the child's teachers are aware. Make sure that your local first responders are aware. So actually bringing your child to, let's say, the fire station. Meet the firefighters, meet the paramedics, meet the police officers in your town. Introduce your child to them and introduce them to your child. So that, heaven forbid, the child does elope, everybody's already aware of who your child is, where your child is likely to go, and has a relationship with the family as well.

One of the reasons some families are hesitant to make that 911 call when their child is missing is because they don't want people to think, "Oh, I wasn't a good parent. People are going to think that I wasn't taking care of my child." It's not that at all. It can literally be you turn your head to look at one child and the other child has gone out the front door, quick as that. So, creating those relationships proactively then allows us to react much more quickly and in a much more informed way in the event that that does happen.

There's also a lot of resources online. If families Google the Big Red Safety Box through the National Autism Association, there are resources there. The NAA has grants to provide those boxes to families at no cost. There are visuals, stop signs for families to put on doors and windows in the home, information about alarms so that they can alarm their doors and windows as well, and additional resources. So, getting that information and also starting to think about some of the places that your child might go. So typically, there are two main reasons why a child elopes, very broad reasons. I want something, or I don't want something to obtain something or have an experience of something or to escape.

So, a lot of times we find, let's say a summer barbecue, the child is used to having the backyard to themselves. Maybe they're on the trampoline alone, suddenly a summer barbecue, there are 40, 50 people in that backyard. It's loud. It's overstimulating. It's overwhelming. The child escapes. So, thinking about some of those new situations where the child might be overstimulated in the home and being very aware of that and creating almost like a tag-your-it type of system with the adults in the group. So, mom is in charge of the child from this time to this time. She's going to go have lunch, tag somebody else in. Now, brother is in charge or uncle is in charge from this time to that time. So, everybody's sort of taking a turn, being extra vigilant in those situations.

With the other side, with the I want something, that's when we start to think about where is the child typically going during an elopement. Are they going towards water? Are they going to the grocery store? I know I'm personally connected to someone who elopes and goes to CVS and goes right to the snack aisle. Flaming Hot Cheetos is his snack of choice. So, we know that he's seeking high-impact flavor. How can we start to incorporate some of that sensory piece at home so he's not going to seek that out elsewhere?

But in all cases, we have to prepare for the possibility that despite all the supports we put in place, despite the locks, despite the alarms, there's still that possibility of an elopement. So, that's where that relationship with first responders is so important.

Host 2: So if we were to say start at home and start with the child, what kind of education are we able to provide the children? Is there any way to help the child understand the safety concerns that go with being around large water bodies. How do we provide that education?

Ariana DeAngelis: It depends on the child. It depends on how the child is able to process information, how the child is able to connect their own personal experience to that information. So, you could do some safety lessons about safety in water, things of that nature. But if the child's not connecting those lessons to their own experience of being in water, that can be a challenge. But one thing that can be useful are social narratives. So if the child is able to process and make those connections, some simple social narratives about water safety and what to do if you want to leave the house and how you have to have an adult with you can be very helpful as well.

Host 2: So, it sounds like making the experience positive and helping the child understand the risks that come with having an experience that is positive so that they can develop an innate sense of safety.

Ariana DeAngelis: Right. Absolutely. And again, it's going to be so child dependent what types of supports will be appropriate.

Host 2: Yeah, depending on their age and stage of development and understanding.

Ariana DeAngelis: Absolutely. Absolutely.

Host 1: Frankly, I haven't thought about this very much.

Ariana DeAngelis: Sure, understandable.

Host 1: Yeah, even though I've dealt with a lot of autistic kids. And your example of the barbecue, and emphasizing how to don't go it alone, it probably could happen and be helpful to tell the people at the barbecue that, "Hey, keep your eye out on our son, because he sometimes wanders and, you know, that's just part of autism."

Ariana DeAngelis: Definitely. The more trusted people you have on your team, the better off you are.

Host 1: Extra set of eyes.

Ariana DeAngelis: Yep. Yep. Absolutely. If you trust your neighbors, let them know, "If you see my child out on the front lawn, they're not supposed to be there. Call me immediately." And also, just as an aside, thank you for bringing that up, perfect segue, if your neighbors have pools, talk to your neighbors about locking those pools, making sure they're covered, making sure that your child cannot get in and that your neighbors are vigilant as well.

Host 2: So, what we're doing in other ways is also providing education because there's so much stigma in having a diagnosis of autism. So, I'm wondering if you can provide some guidance on how families can negotiate that conversation with their friends and colleagues and extended family, sharing that my child has a diagnosis of autism. It's like having diabetes or hypertension, but not exactly the same and bring people on board in basically a village of support.

Ariana DeAngelis: I love how you phrase that a village of support. I think that's the goal. A village of support locally, a village of support internationally so that everybody has this deep understanding of what autism is and how incredible autistic children and adults are and how valuable and one of the things that we often say to people is an autism diagnosis provides information.

With that diagnosis, you know how this person's neurology interacts with the world around them, with the people around them, with the world within them, and having that information empowers everyone around that person to provide that adequate support. So, really, you know, of course, with the family's comfort level, having some conversations, simply, "My child is autistic or my child is on the spectrum. One of the many things about my child is that they're really drawn to water, and we're really trying to keep them safe, and we noticed that you have a pool. Anything that you could do to help us would be so appreciated." Really expressing that gratitude and forming that connection. And again, I have to emphasize a trusted neighbor. Making sure that we trust that neighbor before we let them know all of this information. But if you really can form that village, as you said, I think it's extraordinarily important.

Host 2: So from your experience of working with the Autism Project and kids and families with autism in general, what would be the top concerns when it comes to safety? And going back to the topic of the day, which is safety around water bodies, if there's one take-home point that we could share with our listeners, what would that be?

Ariana DeAngelis: In terms of our top safety concern, elopement is right up there at the top because there are so many different variables at play when a child leaves supervision, that safety supervision, the possibility of being in a body of water, the possibility of interacting with traffic. There's so many different components. So, the take-home message would be twofold. One, if the child has eloped, don't hesitate. Call 911. And two, for the first responders, go to water first would absolutely be the take-home messages.

One of the things that I have often reflected on is I have been at the autism project for over four years now. And in those four years, locally, three children have been on the news for elopement that ended in a tragedy. And so, when we're thinking about how we can respond to these different situations, we also have to think about how we're responding to families and how we're interacting with families whose children have eloped. And my suggestion always is to emphasize kindness, to emphasize understanding, and to emphasize support.

Having a child, an autistic child, who elopes, there's nothing like it. So, people might think that they understand. But unless they've been through it themselves with their own child, they don't know what that experience is. So really, the only way forward when interacting with families who have experienced this is to say, "What can I do to help? How can I help you?" And to meet them with kindness.

Host 2: It feels like this is a topic that's, you know, just up here for discussion, but sounds like from what you're saying, it's pretty real. And it's not that infrequent that families have landed up in this sad situation. Thank you, Ariana, for joining us. I understand you also have some videos on the Autism Project website that you guys have developed to support and prepare families and caregivers to handle emergency situations when they occur. We will be sure to share them on our Facebook page as well. Is there anything else you'd like to add before we wrap up today?

Ariana DeAngelis: Just gratitude for myself and for my community and from all the families who are impacted by this. Thank you for getting this message out. And if any families need more information, they can reach out to the Autism Project.

Host 1: That's wonderful, Ariana. Thank you. And thank you so much for being here. Thank you, Tanuja. This advice will really help our families terrifically, I think, this summer and in years to come. So, to our listeners, if you found today's episode interesting, check out our other podcasts at www.bradleyhospital.org/podcast, and please share it with your friends as well.