February 12, 2024 • 31 mins
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.
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Episode Transcript
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Scott Light (00:03):
Question, who has a great or, you know, let's be
honest, awful first date storyto share. Ana, why don't you
start us off?
Ana Santos (00:12):
So when I met my fiancee, he had told me he had
children. I did not at the time.
And it was really nice becausewe went on a coffee date. We
walked around downtown Dublin,and his kids called, and it was
really moving because he didn'tignore the phone call. He like
spoke to all of his kids. Andjust the way that he like
incorporated them was like, Oh,I'm on a date. And like, that
(00:32):
was just really heartwarming.
Scott Light (00:36):
All right Julie, can you follow that up?
Julie (00:38):
Sure can. I met my husband in the grocery store,
completely unexpected. Our firstdate was not great. And I didn't
know that there would be asecond one.
Scott Light (00:52):
Oh, really? Okay.
Julie (00:54):
But turn around, and we've been married almost 25
years.
Scott Light (00:57):
Oh all right. Well, that's a good story as well.
Well, guess what, folks? That'swhat we are talking about today
on the boundless podcast, alittle bit of a twist, but we're
talking about dating for peopleand their families and
communities have autism andintellectual and developmental
disabilities. Boundless, youknow this by now we say it on
each and every podcast, is anonprofit that provides
(01:19):
residential support, autismservices, primary health care,
day programs, counseling, and awhole lot more to children and
adults. Our mission is to builda world that realizes the
boundless potential of allpeople. I'm your host, Scott
Light. So you heard our guestsalready now let me properly
introduce you to them. Julie isa wife and mom whose son with
(01:40):
autism has come to Boundless forseveral years now for different
services and programs on AnaSantos is here as well. She is a
residential manager here atboundless a welcome to you both.
Thank you. Thank you. Let mealso say from the start, we are
only going to use Julie's firstname to protect her family
because yeah, this is sensitivestuff. So Julie, thank you so
(02:01):
much for sharing this and kindof taking us inside the walls of
your home and kind of insideyour family dynamics. So why
don't we start there, if youwould tell us about your younger
son,
Julie (02:13):
Our son is turning 22 next month, this month,
actually, he lives at home withus. He was diagnosed with autism
at 18 months old, which wasreally early back then. We did
10 years of intensive therapywith him. And he's come along a
long way. He attended publicschools. He would say his
(02:38):
greatest achievement was playingclarinet in the marching band
and concert band in high school.
He he loved it. That was histotal reason for being there. He
would also tell you his favoritesubject was math, which is still
the case. He's a numbers guy. Heloves all things game shows. He
(02:58):
keeps stats of more numberrelated things than I can count.
He loves to water ski and snowski. And he would eat pizza
every single day. Those areprobably all of his highlights
if you were to ask him. That'swhat he would say,
Scott Light (03:21):
Well, we would all eat pizza if we could. Julie,
let me ask a couple of thingshere. What has the dating
journey been like for him andfor you and your husband?
Julie (03:32):
It's been interesting.
Our son's always been verysocial and his own way. But he,
he struggles with socialboundaries. He struggles with
social cues. He's wanted to havea girlfriend for as long as I
can remember. And this wasalways a big goal. He set
timelines for himself of havinga girlfriend having a wife. But
(03:54):
when high school ended, hedidn't date during high school
he he'd go on lunch dates withfriends or ice cream dates with
with kids that he knew fromschool. But when high school
ended, and all the other kidswent off on their journeys. He
was kind of left with where do Ifind people? Where do I Where do
(04:15):
I look. And he wanted to usedating apps. And it was a real
challenge to direct him to appsthat were appropriate and safe
for him and also to help himfind the type of person he was
looking for. He actually met hisfirst girlfriend on an autism
(04:37):
friendship app. And that wasabout a year and a half ago.
Their relationship recentlyended but it was a great
experience for all of us. Forher family and and ours.
Scott Light (04:53):
I'm certainly gonna bring Ana into this
conversation. But Julie, I wantto ask you one other question
right here out of the gate. ate?
I can tell from the pre podcastconversations that you and I
had, you study and you research.
Did you study and research thiswhole dating scene so to speak,
(05:15):
once your son started asking youquestions, maybe after high
school, and where did you go tofind information?
Julie (05:23):
Great question. And yes, I did. He took a relationships
sort, of course, for wasprobably two or three months,
they would meet weekly, theytalk about how to meet friends
how to date that came about fromresearch. I belong to multiple
(05:47):
Facebook, parent groups andother autism groups and just
reading other people'sexperiences, I'd see the name of
an app or I'd see the name of anevent. And then I'd go and
research that out, I tried tosuggest to him things he could
do. Some of them he liked, someof them. He didn't, you know,
the apps and the online chatrooms are by far our biggest
(06:08):
challenge. But that's where allkids go these days. So keep
trying to keep up with what hewas finding, he would find apps
that I've never heard of before.
And then I would usually have tocatch up to him where he was at
and say, This is great, butmaybe not what you're looking
(06:31):
for, or this is not great atall. And we don't want to do
this, this is not what you'relooking for. And you have to be
very, I had to be verystraightforward and blunt with
him and say, the people on thisapp are looking for this. You
are looking for that. So alllet's try to find something
(06:57):
that's better for you.
Scott Light (07:00):
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'mjust curious, what are your,
what are your broad thoughtshere? First of all.
Ana Santos (07:12):
I think it's beautiful, how supportive you
are, and how you empower him tofind a relationship or get into
that weird dating thing, becausedating can be very weird.
Because it doesn't happen a lot.
And for so many reasons. Itcould be that they need more
(07:35):
coaching. And instead ofcoaching and guiding them how to
appropriately have aconversation on a date versus
with your friend. I think a lotof parents get very scared. And
they're like, Nope, they can'tdate. And eventually, I think
that urge and that desire todate and to find that connection
that's outside of your familyand your staff becomes a little
(07:56):
bit overwhelming. And thenbefore you know it, that's all
they can think about and aren'tthe population, they like to
kind of obsessively think aboutthings. And that's all they can
think about. And so I think it'skind of unique to think about
that, like we spend all of ourlives, whether you are a parent
or guardian or you are aprofessional, to empower them,
(08:20):
to find connection to be able toguide them through the worlds
how they see it. So it's kind ofsilly to not think like, why
don't we do that when they wantto have a relationship. So we
empower them to do good inschool to get a job to live on
their own. But there's that finething that makes you an adult by
(08:40):
having those relationships. So
Julie (08:46):
I agree 100%, I think it's hard for parents, because
it can be an uncomfortablesubject. And so it's easy to not
talk about it until you have totalk about it. And we're guilty
of that. But we found that wehave to talk about and sometimes
(09:12):
we have to bring things upfirst, before he encounters them
just to help prepare, and itmight not be an easy
conversation. But you just haveto be very straightforward. Keep
it simple. And repeat.
Scott Light (09:31):
Did you and your husband set some ground rules
with your son out of the gate?
Did you did you say hey, buthere's some parameters that
we're going to set at thebeginning of this dating
journey.
Julie (09:42):
Yes, upon leaving high school, we had to set a ground
rule. No one under 18. You arean adult now. And I get it.
You're just in school a couplemonths ago and talking to girls
who were 16 and 17 years old,but buddy, you can't, you just
(10:05):
can't do that anymore. And therules are different. And that
was very difficult for him tounderstand. And very difficult
to follow for a while that andthen online safety. That was
another big rule in our house isto, you know, we need to know
who you're talking to. We didn'talways, and sometimes we would
(10:30):
find out, you know, he had a runin with the wrong person. But he
learned, he learned real fast,how to recognize good people
from bad people, people who werelooking for money, it's really
easy to fall into, you know,when, when you've got a pretty
girl who's being super nice toyou, and, you know, all they
(10:56):
just need a little bit of helpmom. And, you know, those
conversations are rough. But butthey're, they're important.
Ana Santos (11:05):
And it's really hard to not take that personal when
you see someone who isintentionally trying to take
advantage of someone. We do roleplaying. And when I say role
playing like we will roleplaylike, how do you sit at a table
when you're going on a date? Howdo you do open the door like
(11:26):
we're teaching, like, themannerisms that like you want to
fill in a date. And I think,excuse me, I think that's a
really practical and way to showthem because a lot of our folks,
you can talk and you can talkand talk. But once you
demonstrate it, it's like alight bulb clicks. And it's just
interesting to see how manytimes you're like, Well, let's
(11:48):
not do that, you're not going toreach over and grab that
person's food because it looksreally good. And you didn't
order it, you know, like thosetypes of things. But it's, it's
a very lengthy process even andthen when they do find a
girlfriend or a boyfriend, ityou still have to coach them,
because they're so excited. Oh,I have a girlfriend, I have a
(12:09):
boyfriend. It's like now what?
When or they have the firstfight, or, you know, like that
type of stuff. So
Julie (12:16):
My son's first girlfriend, well, his only
girlfriend. So far, they metonline, like I said, and I mean,
I think they were telling eachother they loved each other on
day two. And it turns out such asmall world, we actually knew
her family. It just acoincidence, we figured out who
(12:41):
each other was. And that wassuch a huge plus in our world,
because right out of the gate,parents are communicating. And
we were her mom and I would betexting and talking on the phone
to help them, you know, arrangebecause it was new for both of
(13:02):
them. Sure. And we helpedarrange their dates, we helped
suggest ideas of where theycould go what they could do,
when she would be upset withabout something, her mom would
text me and say, Hey, this isgoing on. What do you think? And
I could say, oh, well, it's thisand that. And she's, oh, okay,
(13:23):
I'll talk to her. We'll work itout. And so, you know, we were
always in the back room, helpingthem navigate how to do this.
Because it was hard once theygot through that initial, you
know, excitement of meetingsomeone new, then figure out
what what to do what comes whatcomes next.
Scott Light (13:46):
So let me ask this, what do you do on the physical
side of that? You said, you'rein the background? Did you stay
in the background? When theywere together? And again, what
do you do when the physicalcomes into play?
Julie (14:00):
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 tospend time together and cuddle
and they were just, it was justmeant everything. I mean, they
(14:23):
were both just on top of theworld. as things progressed, one
of them had interest to maybe bea little more intimate, the
other one did not have as muchinterest. So we, as parents
worked in the background,talking to each one of them
trying to help explain how theother person was feeling.
(14:45):
Because I think I got toimagine, you know, you
experienced the same thing. Imean, they they really only are
in touch with what they feel andwhat they know. And so the other
person's person Practice istotally foreign.
Ana Santos (15:03):
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 thatshows G rated kissing, okay. And
if they get curious, even morethan, then we start really
(15:23):
having those very privateconversations and just being
very descriptive. When it comesto them, having sex, we are
educating on everything from, ifyou want to change your mind,
you change your mind, no meansno to these are the types of
(15:44):
protection you should use. Thisis what happens if you what can
happen, if you don't haveprotection, it can be a little
alarming. Because when you youknow, when you hear you may be
working, and they have theirboyfriend or girlfriend over and
you obviously hear things andyou're just like, Okay, I'm just
gonna do my thing here, andshe's gonna keep washing dishes.
(16:06):
And then afterwards, wetypically do have a
conversation, you know, what didyou feel after you had sex? What
did you feel before, you know,because there's a lot of
emotions that I don't think werecognize from not being having
autism, we just kind of goobviously, with the flow. And so
(16:27):
hearing those emotions, itreally helps us guide them, you
know, like, Oh, I was reallynervous, I didn't know what to
do. We have taken some of ourindividuals to adult shops. And
we're like, maybe you shouldwatch this and kind of get some
ideas. Boundless at one pointhad a sex education class. It
was very descriptive. But it wasvery educational. That was the
(16:51):
whole purpose of it. And thenjust having that open
communication that like, everytime you have sex, if you want
to talk about it, let's talkabout it. We've had some
instances where like, theydidn't like it with one person.
And we're like, well, it's notthe end of the world, you know,
maybe just add that and go on toa different one, or we have that
they just want to have sex. Andso at that point, we really have
(17:14):
to educate the importance ofbeing protective.
Scott Light (17:17):
Ana, in your experience, is there an age or
ages that maybe present morechallenges than others?
Ana Santos (17:26):
I would definitely say our older 50 Plus, yes, they
may be 50 plus years old. Butthey usually have the mentality
of like, a teenage young adult.
So I think them understandingthat you have to take they want
to rush, like everything wantsto be rushed. And just
understandingly, clips take ourtime, that's really, you're not
(17:47):
in love after the second day,you know, you have to earn that
love, you have to earn thattrust. But I do think it does
become a smaller pool, because alot of our population after 50
isn't usually into dating. Wenormally are seeing it with the
adults from 20 to about 40
Scott Light (18:08):
Question for both of you. Let's talk about the
benefits and the growthopportunities that come from
dating. And there are a coupleof people that I'd like for you
to share this story to people.
They came together through theresidential program at
boundless, right. And this oneyoung lady came to your office
and it started with her seeing apicture in your office. Yes.
Ana Santos (18:32):
So we have, we have an office, and she was coming to
visit her residential manager.
And her residential manager andmy office are right across from
each other. So when you walk byyou see all the pictures that I
have. And she saw a picture ofthe guy that I have on my
caseload. And she was like, Whois that, like stop dead in her
(18:52):
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 waslike, Oh, I know. And then she
asked, does he have agirlfriend? I said, No, he's
looking for one. And she blushedto this little like blush like
face. And I said, Do you want tomeet him? And she goes, Oh,
(19:13):
geez, yes. So his birthday wascoming up. And we were gonna
have a big birthday party forhim. And I asked her, I said, Do
you want to come to his birthdayparty? And she said, Please,
please, please. So that's whathappened. They officially met at
his birthday party. And they'vebeen together for a year and so
(19:34):
it's the cutest thing. They win.
We have dances with boundless,they're always dancing together.
They go on dates. He bought hera ring when he went to Disney
World last year and he says thatthey're engaged and he talks
about how they're gonna getmarried in his backyard and
they're just the cutest they'reeven going to the Met ballet
this Sunday together on a datelike they're just the cutest
(19:55):
couple out there.
Scott Light (19:58):
Julie, what about growth opportunities are these
for your son?
Julie (20:01):
Definitely a lot of a lot of growth with my son throughout
this relationship, confidenceboosting a lot of self
realization that, you know,recognizing what he wants, and a
girlfriend. You know, they theysplit. And not because anything
(20:24):
necessarily bad happened, butthey were just kind of going in
different directions and theywanted different things. And we
we had to kind of have aconversation to say, what do you
want? What what's important toyou? And what are you looking
for? And so there's definitely alevel of another level of
(20:45):
maturity that came from havingthe relationship understanding
perspective taking, like wetalked about good things, just
growth in general,
Scott Light (20:57):
What does he say now? Would would he want in his
next relationship or nextgirlfriend? What has he
expressed to you?
Julie (21:06):
He would like to find a girlfriend who loves game shows
as much as he does. Who, whoreally has more common interests
with him, someone who lives alittle closer, his first
girlfriend lived about an houraway from here. So that
(21:26):
presented a little bit of achallenge. He's pretty open.
He's pretty open to someone whoshares common interest and, and
just wants to be with him asmuch as he wants to be with her.
Ana Santos (21:41):
Does he want to date someone who is also on the
spectrum? Or is he open todating someone who is not?
Julie (21:47):
I think he's open to dating someone who's not. But
personally, I think he would dobetter with someone on the
spectrum just to be able tounderstand his he has, you know,
some anxiety and some, somethings that he struggles with.
And that's one thing that hisgirlfriend because she was on
(22:08):
the spectrum as well. And theywere pretty similar levels. And
she understood she understood alot of what he was going
through. And, and vice versa, toher and they were able to really
comfort each other and, and bethere to support each other,
which was really nice, becausethey knew how it felt. Yeah,
Ana Santos (22:28):
We always tell our folks, because a lot of them are
very open to either someone onthe spectrum or not, we always
tell them that if you are goingto date someone who's not on the
spectrum, to be honest, and tohave 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
(22:50):
make me anxious, and then wecoach them on like how to give
examples versus a definition. Ithink that's a really good tool
to use to communicate. And someof our folks have continued to
date. And it may fizzle ifthey're not on the spectrum. But
we've also seen that they atthat person appreciates that
(23:11):
open communication too.
Scott Light (23:13):
You mentioned a tool to communicate, let me ask
you both about a mainstream toolthat's been out there. We know
that awareness is huge. Andwe're talking about all of this
when I asked you about thatNetflix Docuseries called Love
on the spectrum. There were twoseasons of it. And it was
centered on people on the autismspectrum who were dating, they
were in relationships, andgenerally looking for
(23:35):
companionship and love. I don'tknow if you saw it. But
generally, if a mainstream TVshow does proper justice to the
subject, this is a good thing.
Ana Santos (23:45):
I think it's an amazing thing. Like I love when
they're showing the speed datingpart. Like I would love it if we
could do something like thatwith boundless. And with other
organizations. I think thatwould just be such a great tool.
But I love the show, I think Ido get a little leery sometimes
watching the shows that arecentered around autism, I'm
(24:06):
like, ooh, kind of seems alittle exploiting and kind of a
little fake. But I think thisone just has such a good balance
because it shows the parent sideof it and it shows the person
who wants to date side of it.
And I think it's I think it'svery educational, and it's very
supportive on so many levels.
Scott Light (24:21):
For the most part, you think that they've gotten it
right. Yes.
Ana Santos (24:26):
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 Ithink that's a really good topic
that does need to be discussed.
Julie (24:40):
I agree. I love the show.
I loved it. My son watched it.
And his one of the first thingsyou said while we were watching
is how do I get to be on thatshow? And then it was I want to
do that speed dating thing. Iwould I would love especially
(25:01):
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 thebiggest challenges is how do you
find someone, period, let alonesomeone who has common
interests. But as far as theshow goes, I mean, I think it's
great they they show individualsat all different levels, you
(25:23):
know, for for a while shows onlyportrayed people with autism at
the Savant level. And that'sjust not reflective of a good
majority of our population. AndI think that love on the
spectrum to did a great jobbecause you know, everybody
(25:43):
deserves to find love.
Scott Light (25:47):
Julie, you've got an expert right here with you in
honor. What question orquestions do you have for her on
on that, on that journeyforward?
Julie (25:58):
One of my biggest questions is how do your folks
meet people?
Ana Santos (26:04):
So we try the whole common common interest things,
you know, how this couple that Iwas talking about there in our
program, so it just kind ofworked out beautifully. For
those other I guess environmentswhere they may want to date
someone who's not on thespectrum. We encourage online
dating. I mean, I know that mayruffle some feathers and people
(26:28):
like, oh, how could you do that?
But we're we live in the 21stcentury. I mean, it's, it's a
very common thing. And itactually does seem to be less
anxiety driven, to have somekind of screen in front of them
to initiate that conversation,versus having that one on one
interaction at a restaurant orat a bowling alley are there, we
(26:48):
have to be aware of our sensoryfirst, like, we got to ease them
into it. And so a lot of timeswe do we do online dating, or
it's a small community. So youknow, I've tried to introduce
people that I used to work withat a different company to some
of my folks and just trying tokeep an open minded possibility
of it, a lot of them, which isreally great, as a lot of them
(27:12):
will actually meet theirboyfriend and girlfriend at
their day programs. That's beena huge, huge comment environment
that couples meet.
Julie (27:22):
How do you monitor the safety factor? With online
dating?
Ana Santos (27:28):
Um, it's very tricky. So if they are their own
guardian, we're going to askpermission. You know, we tried
to do a lot of open endedquestions 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 someoccasions where I have an
(27:50):
individual, she loves to meetguys on Facebook, she'll talk to
them, she'll chat with them. Andsometimes it is a really
enriching place. But she hasalso had some incidents where
people just want money from heror they want her to send
pictures and you're just like,oh, okay, let's back this up a
(28:10):
little bit. So we'll, again thatopen communication, just
building that trust. If we havesomeone who has a guardian, we
definitely have almost like atrifecta communication like,
Hey, I'm really concerned aboutsome of the things that she was
saying about Bob, can i Withyour permission, look at her
online dating and just kind ofgo from there or her phone or
(28:31):
his phone like we would never doit in a sneaky type of setup. We
definitely want to make thatlike team effort to help guide
them.
Scott Light (28:40):
Let me flip the advice question to both of you
and ask you to share a piece ofadvice not just to our our
listeners who are so consistentand we always love our
consistent listenership therewe're we're always getting new
listeners to our episodes andnew parents, especially so if we
have that parent who's maybelistening and they're wondering,
(29:02):
Okay, I've got Ana here. I'vegot Julie here. Julie's got a
lived experience with her sonobviously at home on a does this
every single day with her workat boundless what would be your
your best piece of sage advice.
When it comes to dating?
Ana Santos (29:19):
I would say it's okay, if it doesn't go smoothly.
I think that's the best way thatour folks learn. And I think
it's the best way that we alllearn how to be that support and
that guide, it's okay to have abad day. It's okay if you get
ghosted, I mean, it's not okay.
But to go through thoseunpleasant parts. Like I think a
(29:41):
lot of the time. Our folks thinkthat dating is rainbows and
unicorns, and it's okay thatit's not always rainbows and
unicorns.
Julie (29:52):
Excellent advice and building on that communicate
couldn't just communicate overand over and over again, we, I
probably had the sameconversation with my son, you
know, five or six times aboutthe same subject until he really
(30:14):
absorbed the message that I wastrying to give him and on the on
the same tone, communicate withthe other family when they do
start dating someone, you know,assuming now for us that was
easy because our son lives athome. But communicating with
(30:35):
that family made life so mucheasier. It made it so much
easier for me to help him tohelp answer his questions and to
also help explain things that hehadn't been exposed to or that
he didn't understand.
Scott Light (30:52):
A lot of good takeaways from our conversation
here. Thank you both.
Julie (30:56):
Thank you.
Scott Light (30:56):
Thank you to our listeners we thank you as
always, don't forget you can bepart of episodes to come email
us your questions or comments atpodcast at Iamboundless.org This
is the wellbeing podcast broughtto you by Boundless.
Question, who has a great or, you know, let's be
honest, awful first date storyto share. Ana, why don't you
start us off?
Ana Santos (00:12):
So when I met my fiancee, he had told me he had
children. I did not at the time.
And it was really nice becausewe went on a coffee date. We
walked around downtown Dublin,and his kids called, and it was
really moving because he didn'tignore the phone call. He like
spoke to all of his kids. Andjust the way that he like
incorporated them was like, Oh,I'm on a date. And like, that
(00:32):
was just really heartwarming.
Scott Light (00:36):
All right Julie, can you follow that up?
Julie (00:38):
Sure can. I met my husband in the grocery store,
completely unexpected. Our firstdate was not great. And I didn't
know that there would be asecond one.
Scott Light (00:52):
Oh, really? Okay.
Julie (00:54):
But turn around, and we've been married almost 25
years.
Scott Light (00:57):
Oh all right. Well, that's a good story as well.
Well, guess what, folks? That'swhat we are talking about today
on the boundless podcast, alittle bit of a twist, but we're
talking about dating for peopleand their families and
communities have autism andintellectual and developmental
disabilities. Boundless, youknow this by now we say it on
each and every podcast, is anonprofit that provides
(01:19):
residential support, autismservices, primary health care,
day programs, counseling, and awhole lot more to children and
adults. Our mission is to builda world that realizes the
boundless potential of allpeople. I'm your host, Scott
Light. So you heard our guestsalready now let me properly
introduce you to them. Julie isa wife and mom whose son with
(01:40):
autism has come to Boundless forseveral years now for different
services and programs on AnaSantos is here as well. She is a
residential manager here atboundless a welcome to you both.
Thank you. Thank you. Let mealso say from the start, we are
only going to use Julie's firstname to protect her family
because yeah, this is sensitivestuff. So Julie, thank you so
(02:01):
much for sharing this and kindof taking us inside the walls of
your home and kind of insideyour family dynamics. So why
don't we start there, if youwould tell us about your younger
son,
Julie (02:13):
Our son is turning 22 next month, this month,
actually, he lives at home withus. He was diagnosed with autism
at 18 months old, which wasreally early back then. We did
10 years of intensive therapywith him. And he's come along a
long way. He attended publicschools. He would say his
(02:38):
greatest achievement was playingclarinet in the marching band
and concert band in high school.
He he loved it. That was histotal reason for being there. He
would also tell you his favoritesubject was math, which is still
the case. He's a numbers guy. Heloves all things game shows. He
(02:58):
keeps stats of more numberrelated things than I can count.
He loves to water ski and snowski. And he would eat pizza
every single day. Those areprobably all of his highlights
if you were to ask him. That'swhat he would say,
Scott Light (03:21):
Well, we would all eat pizza if we could. Julie,
let me ask a couple of thingshere. What has the dating
journey been like for him andfor you and your husband?
Julie (03:32):
It's been interesting.
Our son's always been verysocial and his own way. But he,
he struggles with socialboundaries. He struggles with
social cues. He's wanted to havea girlfriend for as long as I
can remember. And this wasalways a big goal. He set
timelines for himself of havinga girlfriend having a wife. But
(03:54):
when high school ended, hedidn't date during high school
he he'd go on lunch dates withfriends or ice cream dates with
with kids that he knew fromschool. But when high school
ended, and all the other kidswent off on their journeys. He
was kind of left with where do Ifind people? Where do I Where do
(04:15):
I look. And he wanted to usedating apps. And it was a real
challenge to direct him to appsthat were appropriate and safe
for him and also to help himfind the type of person he was
looking for. He actually met hisfirst girlfriend on an autism
(04:37):
friendship app. And that wasabout a year and a half ago.
Their relationship recentlyended but it was a great
experience for all of us. Forher family and and ours.
Scott Light (04:53):
I'm certainly gonna bring Ana into this
conversation. But Julie, I wantto ask you one other question
right here out of the gate. ate?
I can tell from the pre podcastconversations that you and I
had, you study and you research.
Did you study and research thiswhole dating scene so to speak,
(05:15):
once your son started asking youquestions, maybe after high
school, and where did you go tofind information?
Julie (05:23):
Great question. And yes, I did. He took a relationships
sort, of course, for wasprobably two or three months,
they would meet weekly, theytalk about how to meet friends
how to date that came about fromresearch. I belong to multiple
(05:47):
Facebook, parent groups andother autism groups and just
reading other people'sexperiences, I'd see the name of
an app or I'd see the name of anevent. And then I'd go and
research that out, I tried tosuggest to him things he could
do. Some of them he liked, someof them. He didn't, you know,
the apps and the online chatrooms are by far our biggest
(06:08):
challenge. But that's where allkids go these days. So keep
trying to keep up with what hewas finding, he would find apps
that I've never heard of before.
And then I would usually have tocatch up to him where he was at
and say, This is great, butmaybe not what you're looking
(06:31):
for, or this is not great atall. And we don't want to do
this, this is not what you'relooking for. And you have to be
very, I had to be verystraightforward and blunt with
him and say, the people on thisapp are looking for this. You
are looking for that. So alllet's try to find something
(06:57):
that's better for you.
Scott Light (07:00):
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'mjust curious, what are your,
what are your broad thoughtshere? First of all.
Ana Santos (07:12):
I think it's beautiful, how supportive you
are, and how you empower him tofind a relationship or get into
that weird dating thing, becausedating can be very weird.
Because it doesn't happen a lot.
And for so many reasons. Itcould be that they need more
(07:35):
coaching. And instead ofcoaching and guiding them how to
appropriately have aconversation on a date versus
with your friend. I think a lotof parents get very scared. And
they're like, Nope, they can'tdate. And eventually, I think
that urge and that desire todate and to find that connection
that's outside of your familyand your staff becomes a little
(07:56):
bit overwhelming. And thenbefore you know it, that's all
they can think about and aren'tthe population, they like to
kind of obsessively think aboutthings. And that's all they can
think about. And so I think it'skind of unique to think about
that, like we spend all of ourlives, whether you are a parent
or guardian or you are aprofessional, to empower them,
(08:20):
to find connection to be able toguide them through the worlds
how they see it. So it's kind ofsilly to not think like, why
don't we do that when they wantto have a relationship. So we
empower them to do good inschool to get a job to live on
their own. But there's that finething that makes you an adult by
(08:40):
having those relationships. So
Julie (08:46):
I agree 100%, I think it's hard for parents, because
it can be an uncomfortablesubject. And so it's easy to not
talk about it until you have totalk about it. And we're guilty
of that. But we found that wehave to talk about and sometimes
(09:12):
we have to bring things upfirst, before he encounters them
just to help prepare, and itmight not be an easy
conversation. But you just haveto be very straightforward. Keep
it simple. And repeat.
Scott Light (09:31):
Did you and your husband set some ground rules
with your son out of the gate?
Did you did you say hey, buthere's some parameters that
we're going to set at thebeginning of this dating
journey.
Julie (09:42):
Yes, upon leaving high school, we had to set a ground
rule. No one under 18. You arean adult now. And I get it.
You're just in school a couplemonths ago and talking to girls
who were 16 and 17 years old,but buddy, you can't, you just
(10:05):
can't do that anymore. And therules are different. And that
was very difficult for him tounderstand. And very difficult
to follow for a while that andthen online safety. That was
another big rule in our house isto, you know, we need to know
who you're talking to. We didn'talways, and sometimes we would
(10:30):
find out, you know, he had a runin with the wrong person. But he
learned, he learned real fast,how to recognize good people
from bad people, people who werelooking for money, it's really
easy to fall into, you know,when, when you've got a pretty
girl who's being super nice toyou, and, you know, all they
(10:56):
just need a little bit of helpmom. And, you know, those
conversations are rough. But butthey're, they're important.
Ana Santos (11:05):
And it's really hard to not take that personal when
you see someone who isintentionally trying to take
advantage of someone. We do roleplaying. And when I say role
playing like we will roleplaylike, how do you sit at a table
when you're going on a date? Howdo you do open the door like
(11:26):
we're teaching, like, themannerisms that like you want to
fill in a date. And I think,excuse me, I think that's a
really practical and way to showthem because a lot of our folks,
you can talk and you can talkand talk. But once you
demonstrate it, it's like alight bulb clicks. And it's just
interesting to see how manytimes you're like, Well, let's
(11:48):
not do that, you're not going toreach over and grab that
person's food because it looksreally good. And you didn't
order it, you know, like thosetypes of things. But it's, it's
a very lengthy process even andthen when they do find a
girlfriend or a boyfriend, ityou still have to coach them,
because they're so excited. Oh,I have a girlfriend, I have a
(12:09):
boyfriend. It's like now what?
When or they have the firstfight, or, you know, like that
type of stuff. So
Julie (12:16):
My son's first girlfriend, well, his only
girlfriend. So far, they metonline, like I said, and I mean,
I think they were telling eachother they loved each other on
day two. And it turns out such asmall world, we actually knew
her family. It just acoincidence, we figured out who
(12:41):
each other was. And that wassuch a huge plus in our world,
because right out of the gate,parents are communicating. And
we were her mom and I would betexting and talking on the phone
to help them, you know, arrangebecause it was new for both of
(13:02):
them. Sure. And we helpedarrange their dates, we helped
suggest ideas of where theycould go what they could do,
when she would be upset withabout something, her mom would
text me and say, Hey, this isgoing on. What do you think? And
I could say, oh, well, it's thisand that. And she's, oh, okay,
(13:23):
I'll talk to her. We'll work itout. And so, you know, we were
always in the back room, helpingthem navigate how to do this.
Because it was hard once theygot through that initial, you
know, excitement of meetingsomeone new, then figure out
what what to do what comes whatcomes next.
Scott Light (13:46):
So let me ask this, what do you do on the physical
side of that? You said, you'rein the background? Did you stay
in the background? When theywere together? And again, what
do you do when the physicalcomes into play?
Julie (14:00):
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 tospend time together and cuddle
and they were just, it was justmeant everything. I mean, they
(14:23):
were both just on top of theworld. as things progressed, one
of them had interest to maybe bea little more intimate, the
other one did not have as muchinterest. So we, as parents
worked in the background,talking to each one of them
trying to help explain how theother person was feeling.
(14:45):
Because I think I got toimagine, you know, you
experienced the same thing. Imean, they they really only are
in touch with what they feel andwhat they know. And so the other
person's person Practice istotally foreign.
Ana Santos (15:03):
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 thatshows G rated kissing, okay. And
if they get curious, even morethan, then we start really
(15:23):
having those very privateconversations and just being
very descriptive. When it comesto them, having sex, we are
educating on everything from, ifyou want to change your mind,
you change your mind, no meansno to these are the types of
(15:44):
protection you should use. Thisis what happens if you what can
happen, if you don't haveprotection, it can be a little
alarming. Because when you youknow, when you hear you may be
working, and they have theirboyfriend or girlfriend over and
you obviously hear things andyou're just like, Okay, I'm just
gonna do my thing here, andshe's gonna keep washing dishes.
(16:06):
And then afterwards, wetypically do have a
conversation, you know, what didyou feel after you had sex? What
did you feel before, you know,because there's a lot of
emotions that I don't think werecognize from not being having
autism, we just kind of goobviously, with the flow. And so
(16:27):
hearing those emotions, itreally helps us guide them, you
know, like, Oh, I was reallynervous, I didn't know what to
do. We have taken some of ourindividuals to adult shops. And
we're like, maybe you shouldwatch this and kind of get some
ideas. Boundless at one pointhad a sex education class. It
was very descriptive. But it wasvery educational. That was the
(16:51):
whole purpose of it. And thenjust having that open
communication that like, everytime you have sex, if you want
to talk about it, let's talkabout it. We've had some
instances where like, theydidn't like it with one person.
And we're like, well, it's notthe end of the world, you know,
maybe just add that and go on toa different one, or we have that
they just want to have sex. Andso at that point, we really have
(17:14):
to educate the importance ofbeing protective.
Scott Light (17:17):
Ana, in your experience, is there an age or
ages that maybe present morechallenges than others?
Ana Santos (17:26):
I would definitely say our older 50 Plus, yes, they
may be 50 plus years old. Butthey usually have the mentality
of like, a teenage young adult.
So I think them understandingthat you have to take they want
to rush, like everything wantsto be rushed. And just
understandingly, clips take ourtime, that's really, you're not
(17:47):
in love after the second day,you know, you have to earn that
love, you have to earn thattrust. But I do think it does
become a smaller pool, because alot of our population after 50
isn't usually into dating. Wenormally are seeing it with the
adults from 20 to about 40
Scott Light (18:08):
Question for both of you. Let's talk about the
benefits and the growthopportunities that come from
dating. And there are a coupleof people that I'd like for you
to share this story to people.
They came together through theresidential program at
boundless, right. And this oneyoung lady came to your office
and it started with her seeing apicture in your office. Yes.
Ana Santos (18:32):
So we have, we have an office, and she was coming to
visit her residential manager.
And her residential manager andmy office are right across from
each other. So when you walk byyou see all the pictures that I
have. And she saw a picture ofthe guy that I have on my
caseload. And she was like, Whois that, like stop dead in her
(18:52):
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 waslike, Oh, I know. And then she
asked, does he have agirlfriend? I said, No, he's
looking for one. And she blushedto this little like blush like
face. And I said, Do you want tomeet him? And she goes, Oh,
(19:13):
geez, yes. So his birthday wascoming up. And we were gonna
have a big birthday party forhim. And I asked her, I said, Do
you want to come to his birthdayparty? And she said, Please,
please, please. So that's whathappened. They officially met at
his birthday party. And they'vebeen together for a year and so
(19:34):
it's the cutest thing. They win.
We have dances with boundless,they're always dancing together.
They go on dates. He bought hera ring when he went to Disney
World last year and he says thatthey're engaged and he talks
about how they're gonna getmarried in his backyard and
they're just the cutest they'reeven going to the Met ballet
this Sunday together on a datelike they're just the cutest
(19:55):
couple out there.
Scott Light (19:58):
Julie, what about growth opportunities are these
for your son?
Julie (20:01):
Definitely a lot of a lot of growth with my son throughout
this relationship, confidenceboosting a lot of self
realization that, you know,recognizing what he wants, and a
girlfriend. You know, they theysplit. And not because anything
(20:24):
necessarily bad happened, butthey were just kind of going in
different directions and theywanted different things. And we
we had to kind of have aconversation to say, what do you
want? What what's important toyou? And what are you looking
for? And so there's definitely alevel of another level of
(20:45):
maturity that came from havingthe relationship understanding
perspective taking, like wetalked about good things, just
growth in general,
Scott Light (20:57):
What does he say now? Would would he want in his
next relationship or nextgirlfriend? What has he
expressed to you?
Julie (21:06):
He would like to find a girlfriend who loves game shows
as much as he does. Who, whoreally has more common interests
with him, someone who lives alittle closer, his first
girlfriend lived about an houraway from here. So that
(21:26):
presented a little bit of achallenge. He's pretty open.
He's pretty open to someone whoshares common interest and, and
just wants to be with him asmuch as he wants to be with her.
Ana Santos (21:41):
Does he want to date someone who is also on the
spectrum? Or is he open todating someone who is not?
Julie (21:47):
I think he's open to dating someone who's not. But
personally, I think he would dobetter with someone on the
spectrum just to be able tounderstand his he has, you know,
some anxiety and some, somethings that he struggles with.
And that's one thing that hisgirlfriend because she was on
(22:08):
the spectrum as well. And theywere pretty similar levels. And
she understood she understood alot of what he was going
through. And, and vice versa, toher and they were able to really
comfort each other and, and bethere to support each other,
which was really nice, becausethey knew how it felt. Yeah,
Ana Santos (22:28):
We always tell our folks, because a lot of them are
very open to either someone onthe spectrum or not, we always
tell them that if you are goingto date someone who's not on the
spectrum, to be honest, and tohave 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
(22:50):
make me anxious, and then wecoach them on like how to give
examples versus a definition. Ithink that's a really good tool
to use to communicate. And someof our folks have continued to
date. And it may fizzle ifthey're not on the spectrum. But
we've also seen that they atthat person appreciates that
(23:11):
open communication too.
Scott Light (23:13):
You mentioned a tool to communicate, let me ask
you both about a mainstream toolthat's been out there. We know
that awareness is huge. Andwe're talking about all of this
when I asked you about thatNetflix Docuseries called Love
on the spectrum. There were twoseasons of it. And it was
centered on people on the autismspectrum who were dating, they
were in relationships, andgenerally looking for
(23:35):
companionship and love. I don'tknow if you saw it. But
generally, if a mainstream TVshow does proper justice to the
subject, this is a good thing.
Ana Santos (23:45):
I think it's an amazing thing. Like I love when
they're showing the speed datingpart. Like I would love it if we
could do something like thatwith boundless. And with other
organizations. I think thatwould just be such a great tool.
But I love the show, I think Ido get a little leery sometimes
watching the shows that arecentered around autism, I'm
(24:06):
like, ooh, kind of seems alittle exploiting and kind of a
little fake. But I think thisone just has such a good balance
because it shows the parent sideof it and it shows the person
who wants to date side of it.
And I think it's I think it'svery educational, and it's very
supportive on so many levels.
Scott Light (24:21):
For the most part, you think that they've gotten it
right. Yes.
Ana Santos (24:26):
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 Ithink that's a really good topic
that does need to be discussed.
Julie (24:40):
I agree. I love the show.
I loved it. My son watched it.
And his one of the first thingsyou said while we were watching
is how do I get to be on thatshow? And then it was I want to
do that speed dating thing. Iwould I would love especially
(25:01):
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 thebiggest challenges is how do you
find someone, period, let alonesomeone who has common
interests. But as far as theshow goes, I mean, I think it's
great they they show individualsat all different levels, you
(25:23):
know, for for a while shows onlyportrayed people with autism at
the Savant level. And that'sjust not reflective of a good
majority of our population. AndI think that love on the
spectrum to did a great jobbecause you know, everybody
(25:43):
deserves to find love.
Scott Light (25:47):
Julie, you've got an expert right here with you in
honor. What question orquestions do you have for her on
on that, on that journeyforward?
Julie (25:58):
One of my biggest questions is how do your folks
meet people?
Ana Santos (26:04):
So we try the whole common common interest things,
you know, how this couple that Iwas talking about there in our
program, so it just kind ofworked out beautifully. For
those other I guess environmentswhere they may want to date
someone who's not on thespectrum. We encourage online
dating. I mean, I know that mayruffle some feathers and people
(26:28):
like, oh, how could you do that?
But we're we live in the 21stcentury. I mean, it's, it's a
very common thing. And itactually does seem to be less
anxiety driven, to have somekind of screen in front of them
to initiate that conversation,versus having that one on one
interaction at a restaurant orat a bowling alley are there, we
(26:48):
have to be aware of our sensoryfirst, like, we got to ease them
into it. And so a lot of timeswe do we do online dating, or
it's a small community. So youknow, I've tried to introduce
people that I used to work withat a different company to some
of my folks and just trying tokeep an open minded possibility
of it, a lot of them, which isreally great, as a lot of them
(27:12):
will actually meet theirboyfriend and girlfriend at
their day programs. That's beena huge, huge comment environment
that couples meet.
Julie (27:22):
How do you monitor the safety factor? With online
dating?
Ana Santos (27:28):
Um, it's very tricky. So if they are their own
guardian, we're going to askpermission. You know, we tried
to do a lot of open endedquestions 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 someoccasions where I have an
(27:50):
individual, she loves to meetguys on Facebook, she'll talk to
them, she'll chat with them. Andsometimes it is a really
enriching place. But she hasalso had some incidents where
people just want money from heror they want her to send
pictures and you're just like,oh, okay, let's back this up a
(28:10):
little bit. So we'll, again thatopen communication, just
building that trust. If we havesomeone who has a guardian, we
definitely have almost like atrifecta communication like,
Hey, I'm really concerned aboutsome of the things that she was
saying about Bob, can i Withyour permission, look at her
online dating and just kind ofgo from there or her phone or
(28:31):
his phone like we would never doit in a sneaky type of setup. We
definitely want to make thatlike team effort to help guide
them.
Scott Light (28:40):
Let me flip the advice question to both of you
and ask you to share a piece ofadvice not just to our our
listeners who are so consistentand we always love our
consistent listenership therewe're we're always getting new
listeners to our episodes andnew parents, especially so if we
have that parent who's maybelistening and they're wondering,
(29:02):
Okay, I've got Ana here. I'vegot Julie here. Julie's got a
lived experience with her sonobviously at home on a does this
every single day with her workat boundless what would be your
your best piece of sage advice.
When it comes to dating?
Ana Santos (29:19):
I would say it's okay, if it doesn't go smoothly.
I think that's the best way thatour folks learn. And I think
it's the best way that we alllearn how to be that support and
that guide, it's okay to have abad day. It's okay if you get
ghosted, I mean, it's not okay.
But to go through thoseunpleasant parts. Like I think a
(29:41):
lot of the time. Our folks thinkthat dating is rainbows and
unicorns, and it's okay thatit's not always rainbows and
unicorns.
Julie (29:52):
Excellent advice and building on that communicate
couldn't just communicate overand over and over again, we, I
probably had the sameconversation with my son, you
know, five or six times aboutthe same subject until he really
(30:14):
absorbed the message that I wastrying to give him and on the on
the same tone, communicate withthe other family when they do
start dating someone, you know,assuming now for us that was
easy because our son lives athome. But communicating with
(30:35):
that family made life so mucheasier. It made it so much
easier for me to help him tohelp answer his questions and to
also help explain things that hehadn't been exposed to or that
he didn't understand.
Scott Light (30:52):
A lot of good takeaways from our conversation
here. Thank you both.
Julie (30:56):
Thank you.
Scott Light (30:56):
Thank you to our listeners we thank you as
always, don't forget you can bepart of episodes to come email
us your questions or comments atpodcast at Iamboundless.org This
is the wellbeing podcast broughtto you by Boundless.
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