Boundless Abilities: Autism and More
Well-Being explores physical, mental, and emotional health, with a special focus on people with intellectual and developmental disabilities or behavioral health challenges such as autism. Each episode features a roundtable of clinicians, community members, educators, and other experts in the field discussing timely topics and sharing strategies to help cope with stress. At Boundless, our mission is to build a world that realizes the boundless potential of all people.
Boundless Abilities: Autism and More
Ep. 40: Healthy Dating Tips for Adults with Disabilities
Dating is tough for many people in this day and age and can be even more difficult if you are an adult with disabilities. Our host, Scott Light, is joined by Julie, a mom of an adult son with autism who has experienced dating, and Ana Santos, residential manager at Boundless, who works with many adults who desire to be in romantic relationships. With shows like Love on the Spectrum this topic is being discussed more often. How can family members and guardians support their adults looking for love? What can parents do to set up safe guidelines while still being encouraging about dating? Listen in to get these valuable perspectives.
Question, who has a great or, you know, let's be honest, awful first date story to share. Ana, why don't you start us off?
Ana Santos:So when I met my fiancee, he had told me he had children. I did not at the time. And it was really nice because we went on a coffee date. We walked around downtown Dublin, and his kids called, and it was really moving because he didn't ignore the phone call. He like spoke to all of his kids. And just the way that he like incorporated them was like, Oh, I'm on a date. And like, that was just really heartwarming.
Scott Light:All right Julie, can you follow that up?
Julie:Sure can. I met my husband in the grocery store, completely unexpected. Our first date was not great. And I didn't know that there would be a second one.
Scott Light:Oh, really? Okay.
Julie:But turn around, and we've been married almost 25 years.
Scott Light:Oh all right. Well, that's a good story as well. Well, guess what, folks? That's what we are talking about today on the boundless podcast, a little bit of a twist, but we're talking about dating for people and their families and communities have autism and intellectual and developmental disabilities. Boundless, you know this by now we say it on each and every podcast, is a nonprofit that provides residential support, autism services, primary health care, day programs, counseling, and a whole lot more to children and adults. Our mission is to build a world that realizes the boundless potential of all people. I'm your host, Scott Light. So you heard our guests already now let me properly introduce you to them. Julie is a wife and mom whose son with autism has come to Boundless for several years now for different services and programs on Ana Santos is here as well. She is a residential manager here at boundless a welcome to you both. Thank you. Thank you. Let me also say from the start, we are only going to use Julie's first name to protect her family because yeah, this is sensitive stuff. So Julie, thank you so much for sharing this and kind of taking us inside the walls of your home and kind of inside your family dynamics. So why don't we start there, if you would tell us about your younger son,
Julie:Our son is turning 22 next month, this month, actually, he lives at home with us. He was diagnosed with autism at 18 months old, which was really early back then. We did 10 years of intensive therapy with him. And he's come along a long way. He attended public schools. He would say his greatest achievement was playing clarinet in the marching band and concert band in high school. He he loved it. That was his total reason for being there. He would also tell you his favorite subject was math, which is still the case. He's a numbers guy. He loves all things game shows. He keeps stats of more number related things than I can count. He loves to water ski and snow ski. And he would eat pizza every single day. Those are probably all of his highlights if you were to ask him. That's what he would say,
Scott Light:Well, we would all eat pizza if we could. Julie, let me ask a couple of things here. What has the dating journey been like for him and for you and your husband?
Julie:It's been interesting. Our son's always been very social and his own way. But he, he struggles with social boundaries. He struggles with social cues. He's wanted to have a girlfriend for as long as I can remember. And this was always a big goal. He set timelines for himself of having a girlfriend having a wife. But when high school ended, he didn't date during high school he he'd go on lunch dates with friends or ice cream dates with with kids that he knew from school. But when high school ended, and all the other kids went off on their journeys. He was kind of left with where do I find people? Where do I Where do I look. And he wanted to use dating apps. And it was a real challenge to direct him to apps that were appropriate and safe for him and also to help him find the type of person he was looking for. He actually met his first girlfriend on an autism friendship app. And that was about a year and a half ago. Their relationship recently ended but it was a great experience for all of us. For her family and and ours.
Scott Light:I'm certainly gonna bring Ana into this conversation. But Julie, I want to ask you one other question right here out of the gate. ate? I can tell from the pre podcast conversations that you and I had, you study and you research. Did you study and research this whole dating scene so to speak, once your son started asking you questions, maybe after high school, and where did you go to find information?
Julie:Great question. And yes, I did. He took a relationships sort, of course, for was probably two or three months, they would meet weekly, they talk about how to meet friends how to date that came about from research. I belong to multiple Facebook, parent groups and other autism groups and just reading other people's experiences, I'd see the name of an app or I'd see the name of an event. And then I'd go and research that out, I tried to suggest to him things he could do. Some of them he liked, some of them. He didn't, you know, the apps and the online chat rooms are by far our biggest challenge. But that's where all kids go these days. So keep trying to keep up with what he was finding, he would find apps that I've never heard of before. And then I would usually have to catch up to him where he was at and say, This is great, but maybe not what you're looking for, or this is not great at all. And we don't want to do this, this is not what you're looking for. And you have to be very, I had to be very straightforward and blunt with him and say, the people on this app are looking for this. You are looking for that. So all let's try to find something that's better for you.
Scott Light:Ana you're, you're here, you're listening to a dedicated parent, as we all are, and Julie sharing experiences and her son's experiences. I'm just curious, what are your, what are your broad thoughts here? First of all.
Ana Santos:I think it's beautiful, how supportive you are, and how you empower him to find a relationship or get into that weird dating thing, because dating can be very weird. Because it doesn't happen a lot. And for so many reasons. It could be that they need more coaching. And instead of coaching and guiding them how to appropriately have a conversation on a date versus with your friend. I think a lot of parents get very scared. And they're like, Nope, they can't date. And eventually, I think that urge and that desire to date and to find that connection that's outside of your family and your staff becomes a little bit overwhelming. And then before you know it, that's all they can think about and aren't the population, they like to kind of obsessively think about things. And that's all they can think about. And so I think it's kind of unique to think about that, like we spend all of our lives, whether you are a parent or guardian or you are a professional, to empower them, to find connection to be able to guide them through the worlds how they see it. So it's kind of silly to not think like, why don't we do that when they want to have a relationship. So we empower them to do good in school to get a job to live on their own. But there's that fine thing that makes you an adult by having those relationships. So
Julie:I agree 100%, I think it's hard for parents, because it can be an uncomfortable subject. And so it's easy to not talk about it until you have to talk about it. And we're guilty of that. But we found that we have to talk about and sometimes we have to bring things up first, before he encounters them just to help prepare, and it might not be an easy conversation. But you just have to be very straightforward. Keep it simple. And repeat.
Scott Light:Did you and your husband set some ground rules with your son out of the gate? Did you did you say hey, but here's some parameters that we're going to set at the beginning of this dating journey.
Julie:Yes, upon leaving high school, we had to set a ground rule. No one under 18. You are an adult now. And I get it. You're just in school a couple months ago and talking to girls who were 16 and 17 years old, but buddy, you can't, you just can't do that anymore. And the rules are different. And that was very difficult for him to understand. And very difficult to follow for a while that and then online safety. That was another big rule in our house is to, you know, we need to know who you're talking to. We didn't always, and sometimes we would find out, you know, he had a run in with the wrong person. But he learned, he learned real fast, how to recognize good people from bad people, people who were looking for money, it's really easy to fall into, you know, when, when you've got a pretty girl who's being super nice to you, and, you know, all they just need a little bit of help mom. And, you know, those conversations are rough. But but they're, they're important.
Ana Santos:And it's really hard to not take that personal when you see someone who is intentionally trying to take advantage of someone. We do role playing. And when I say role playing like we will roleplay like, how do you sit at a table when you're going on a date? How do you do open the door like we're teaching, like, the mannerisms that like you want to fill in a date. And I think, excuse me, I think that's a really practical and way to show them because a lot of our folks, you can talk and you can talk and talk. But once you demonstrate it, it's like a light bulb clicks. And it's just interesting to see how many times you're like, Well, let's not do that, you're not going to reach over and grab that person's food because it looks really good. And you didn't order it, you know, like those types of things. But it's, it's a very lengthy process even and then when they do find a girlfriend or a boyfriend, it you still have to coach them, because they're so excited. Oh, I have a girlfriend, I have a boyfriend. It's like now what? When or they have the first fight, or, you know, like that type of stuff. So
Julie:My son's first girlfriend, well, his only girlfriend. So far, they met online, like I said, and I mean, I think they were telling each other they loved each other on day two. And it turns out such a small world, we actually knew her family. It just a coincidence, we figured out who each other was. And that was such a huge plus in our world, because right out of the gate, parents are communicating. And we were her mom and I would be texting and talking on the phone to help them, you know, arrange because it was new for both of them. Sure. And we helped arrange their dates, we helped suggest ideas of where they could go what they could do, when she would be upset with about something, her mom would text me and say, Hey, this is going on. What do you think? And I could say, oh, well, it's this and that. And she's, oh, okay, I'll talk to her. We'll work it out. And so, you know, we were always in the back room, helping them navigate how to do this. Because it was hard once they got through that initial, you know, excitement of meeting someone new, then figure out what what to do what comes what comes next.
Scott Light:So let me ask this, what do you do on the physical side of that? You said, you're in the background? Did you stay in the background? When they were together? And again, what do you do when the physical comes into play?
Julie:Yeah, that's a great question. A lot of talking. Individually, me with my son, her with her daughter. You know, they they talked a lot together. At first. They just wanted to spend time together and cuddle and they were just, it was just meant everything. I mean, they were both just on top of the world. as things progressed, one of them had interest to maybe be a little more intimate, the other one did not have as much interest. So we, as parents worked in the background, talking to each one of them trying to help explain how the other person was feeling. Because I think I got to imagine, you know, you experienced the same thing. I mean, they they really only are in touch with what they feel and what they know. And so the other person's person Practice is totally foreign.
Ana Santos:What we do is, we don't sugarcoat in the sense like, we, we start off small, okay? So if they've never kissed before, let's watch a movie that shows G rated kissing, okay. And if they get curious, even more than, then we start really having those very private conversations and just being very descriptive. When it comes to them, having sex, we are educating on everything from, if you want to change your mind, you change your mind, no means no to these are the types of protection you should use. This is what happens if you what can happen, if you don't have protection, it can be a little alarming. Because when you you know, when you hear you may be working, and they have their boyfriend or girlfriend over and you obviously hear things and you're just like, Okay, I'm just gonna do my thing here, and she's gonna keep washing dishes. And then afterwards, we typically do have a conversation, you know, what did you feel after you had sex? What did you feel before, you know, because there's a lot of emotions that I don't think we recognize from not being having autism, we just kind of go obviously, with the flow. And so hearing those emotions, it really helps us guide them, you know, like, Oh, I was really nervous, I didn't know what to do. We have taken some of our individuals to adult shops. And we're like, maybe you should watch this and kind of get some ideas. Boundless at one point had a sex education class. It was very descriptive. But it was very educational. That was the whole purpose of it. And then just having that open communication that like, every time you have sex, if you want to talk about it, let's talk about it. We've had some instances where like, they didn't like it with one person. And we're like, well, it's not the end of the world, you know, maybe just add that and go on to a different one, or we have that they just want to have sex. And so at that point, we really have to educate the importance of being protective.
Scott Light:Ana, in your experience, is there an age or ages that maybe present more challenges than others?
Ana Santos:I would definitely say our older 50 Plus, yes, they may be 50 plus years old. But they usually have the mentality of like, a teenage young adult. So I think them understanding that you have to take they want to rush, like everything wants to be rushed. And just understandingly, clips take our time, that's really, you're not in love after the second day, you know, you have to earn that love, you have to earn that trust. But I do think it does become a smaller pool, because a lot of our population after 50 isn't usually into dating. We normally are seeing it with the adults from 20 to about 40
Scott Light:Question for both of you. Let's talk about the benefits and the growth opportunities that come from dating. And there are a couple of people that I'd like for you to share this story to people. They came together through the residential program at boundless, right. And this one young lady came to your office and it started with her seeing a picture in your office. Yes.
Ana Santos:So we have, we have an office, and she was coming to visit her residential manager. And her residential manager and my office are right across from each other. So when you walk by you see all the pictures that I have. And she saw a picture of the guy that I have on my caseload. And she was like, Who is that, like stop dead in her tracks and went to the pitcher. And she pointed and I told her, you know his name. She's like, he's so handsome. And I was like, Oh, I know. And then she asked, does he have a girlfriend? I said, No, he's looking for one. And she blushed to this little like blush like face. And I said, Do you want to meet him? And she goes, Oh, geez, yes. So his birthday was coming up. And we were gonna have a big birthday party for him. And I asked her, I said, Do you want to come to his birthday party? And she said, Please, please, please. So that's what happened. They officially met at his birthday party. And they've been together for a year and so it's the cutest thing. They win. We have dances with boundless, they're always dancing together. They go on dates. He bought her a ring when he went to Disney World last year and he says that they're engaged and he talks about how they're gonna get married in his backyard and they're just the cutest they're even going to the Met ballet this Sunday together on a date like they're just the cutest couple out there.
Scott Light:Julie, what about growth opportunities are these for your son?
Julie:Definitely a lot of a lot of growth with my son throughout this relationship, confidence boosting a lot of self realization that, you know, recognizing what he wants, and a girlfriend. You know, they they split. And not because anything necessarily bad happened, but they were just kind of going in different directions and they wanted different things. And we we had to kind of have a conversation to say, what do you want? What what's important to you? And what are you looking for? And so there's definitely a level of another level of maturity that came from having the relationship understanding perspective taking, like we talked about good things, just growth in general,
Scott Light:What does he say now? Would would he want in his next relationship or next girlfriend? What has he expressed to you?
Julie:He would like to find a girlfriend who loves game shows as much as he does. Who, who really has more common interests with him, someone who lives a little closer, his first girlfriend lived about an hour away from here. So that presented a little bit of a challenge. He's pretty open. He's pretty open to someone who shares common interest and, and just wants to be with him as much as he wants to be with her.
Ana Santos:Does he want to date someone who is also on the spectrum? Or is he open to dating someone who is not?
Julie:I think he's open to dating someone who's not. But personally, I think he would do better with someone on the spectrum just to be able to understand his he has, you know, some anxiety and some, some things that he struggles with. And that's one thing that his girlfriend because she was on the spectrum as well. And they were pretty similar levels. And she understood she understood a lot of what he was going through. And, and vice versa, to her and they were able to really comfort each other and, and be there to support each other, which was really nice, because they knew how it felt. Yeah,
Ana Santos:We always tell our folks, because a lot of them are very open to either someone on the spectrum or not, we always tell them that if you are going to date someone who's not on the spectrum, to be honest, and to have that conversation, like hey, I have a form of autism, and then they don't understand that then you just say like, certain sounds or certain things make me anxious, and then we coach them on like how to give examples versus a definition. I think that's a really good tool to use to communicate. And some of our folks have continued to date. And it may fizzle if they're not on the spectrum. But we've also seen that they at that person appreciates that open communication too.
Scott Light:You mentioned a tool to communicate, let me ask you both about a mainstream tool that's been out there. We know that awareness is huge. And we're talking about all of this when I asked you about that Netflix Docuseries called Love on the spectrum. There were two seasons of it. And it was centered on people on the autism spectrum who were dating, they were in relationships, and generally looking for companionship and love. I don't know if you saw it. But generally, if a mainstream TV show does proper justice to the subject, this is a good thing.
Ana Santos:I think it's an amazing thing. Like I love when they're showing the speed dating part. Like I would love it if we could do something like that with boundless. And with other organizations. I think that would just be such a great tool. But I love the show, I think I do get a little leery sometimes watching the shows that are centered around autism, I'm like, ooh, kind of seems a little exploiting and kind of a little fake. But I think this one just has such a good balance because it shows the parent side of it and it shows the person who wants to date side of it. And I think it's I think it's very educational, and it's very supportive on so many levels.
Scott Light:For the most part, you think that they've gotten it right. Yes.
Ana Santos:I would like them to probably open up about the physical intimacy. Part of it, like how to educate and like how the families navigate because I think that's a really good topic that does need to be discussed.
Julie:I agree. I love the show. I loved it. My son watched it. And his one of the first things you said while we were watching is how do I get to be on that show? And then it was I want to do that speed dating thing. I would I would love especially now that he's looking to date I, I would love an opportunity for him to do a speed dating. Because that's one of the biggest challenges is how do you find someone, period, let alone someone who has common interests. But as far as the show goes, I mean, I think it's great they they show individuals at all different levels, you know, for for a while shows only portrayed people with autism at the Savant level. And that's just not reflective of a good majority of our population. And I think that love on the spectrum to did a great job because you know, everybody deserves to find love.
Scott Light:Julie, you've got an expert right here with you in honor. What question or questions do you have for her on on that, on that journey forward?
Julie:One of my biggest questions is how do your folks meet people?
Ana Santos:So we try the whole common common interest things, you know, how this couple that I was talking about there in our program, so it just kind of worked out beautifully. For those other I guess environments where they may want to date someone who's not on the spectrum. We encourage online dating. I mean, I know that may ruffle some feathers and people like, oh, how could you do that? But we're we live in the 21st century. I mean, it's, it's a very common thing. And it actually does seem to be less anxiety driven, to have some kind of screen in front of them to initiate that conversation, versus having that one on one interaction at a restaurant or at a bowling alley are there, we have to be aware of our sensory first, like, we got to ease them into it. And so a lot of times we do we do online dating, or it's a small community. So you know, I've tried to introduce people that I used to work with at a different company to some of my folks and just trying to keep an open minded possibility of it, a lot of them, which is really great, as a lot of them will actually meet their boyfriend and girlfriend at their day programs. That's been a huge, huge comment environment that couples meet.
Julie:How do you monitor the safety factor? With online dating?
Ana Santos:Um, it's very tricky. So if they are their own guardian, we're going to ask permission. You know, we tried to do a lot of open ended questions like, Hey, how's it going with Bob? And, you know, they start telling us and we're like, you know, we'll be like, let's talk a little bit more into that. There has been some occasions where I have an individual, she loves to meet guys on Facebook, she'll talk to them, she'll chat with them. And sometimes it is a really enriching place. But she has also had some incidents where people just want money from her or they want her to send pictures and you're just like, oh, okay, let's back this up a little bit. So we'll, again that open communication, just building that trust. If we have someone who has a guardian, we definitely have almost like a trifecta communication like, Hey, I'm really concerned about some of the things that she was saying about Bob, can i With your permission, look at her online dating and just kind of go from there or her phone or his phone like we would never do it in a sneaky type of setup. We definitely want to make that like team effort to help guide them.
Scott Light:Let me flip the advice question to both of you and ask you to share a piece of advice not just to our our listeners who are so consistent and we always love our consistent listenership there we're we're always getting new listeners to our episodes and new parents, especially so if we have that parent who's maybe listening and they're wondering, Okay, I've got Ana here. I've got Julie here. Julie's got a lived experience with her son obviously at home on a does this every single day with her work at boundless what would be your your best piece of sage advice. When it comes to dating?
Ana Santos:I would say it's okay, if it doesn't go smoothly. I think that's the best way that our folks learn. And I think it's the best way that we all learn how to be that support and that guide, it's okay to have a bad day. It's okay if you get ghosted, I mean, it's not okay. But to go through those unpleasant parts. Like I think a lot of the time. Our folks think that dating is rainbows and unicorns, and it's okay that it's not always rainbows and unicorns.
Julie:Excellent advice and building on that communicate couldn't just communicate over and over and over again, we, I probably had the same conversation with my son, you know, five or six times about the same subject until he really absorbed the message that I was trying to give him and on the on the same tone, communicate with the other family when they do start dating someone, you know, assuming now for us that was easy because our son lives at home. But communicating with that family made life so much easier. It made it so much easier for me to help him to help answer his questions and to also help explain things that he hadn't been exposed to or that he didn't understand.
Scott Light:A lot of good takeaways from our conversation here. Thank you both.
Julie:Thank you.
Scott Light:Thank you to our listeners we thank you as always, don't forget you can be part of episodes to come email us your questions or comments at podcast at Iamboundless.org This is the wellbeing podcast brought to you by Boundless.