Learning To Love, And Be Loved, With Autism
JOHN DONVAN, HOST:
This is TALK OF THE NATION. I'm John Donvan, in Washington. Neal Conan is off. It is taking a huge risk to let the New York Times reveal in its pages the minute and most personal details of your love life. And the reason the Times even cares to write about the relationship you're in, it's not because you're running for office or because you're a movie star. It's because you are a teenager who has Asperger's syndrome. And by the way, the other person in your relationship is also a teenager with Asperger's syndrome.
Teenagers Jack Robison, who is 19, and Kirsten Lindsmith, who is 18, took that risk. They told their story to writer Amy Harmon of the New York Times, and the risk was worth taking. The resulting piece is a beautiful, inspiring, funny, moving, sometimes sad look at love on the autism spectrum - because that's what Asperger's syndrome is, it is a way that the brain is wired that is sometimes described as a form of autism, but where the person who has it is generally intelligent or above average in intelligence and well-spoken.
But the difficult part of life is in reading social cues. It's missing the joke that everybody else gets. It's not knowing that what you're talking about is boring the life out of everybody else in the room. It's having a tendency to obsess on narrow topics, maybe having some set routines that cannot be interfered with.
It's the sort of thing you would assume that can really get in the way of a romantic relationship, especially as you move into the categories of more severe autism. But we are here to discuss both the right of people on the autism spectrum to love and to be loved, and the ways to overcome the obstacles that may come with autism.
If this is your story, or if it's your child's story, we want to ask you: What has gotten in the way of love? And how have you gotten around it? Give us a call. Our number is 800-989-8255. Our email address is email@example.com. And you can also join the conversation at our website. Go to npr.org and click on TALK OF THE NATION.
Later on in this hour, we're going to be talking with Peter Gerhardt. He is a specialist on adolescents and adults with autism, and on the place of love, romance and sex in their lives. But first, this couple that is making their own way in this world, as seen in the New York Times, Jack Robison and Kirsten Lindsmith join us from a studio at New England Public Radio in Amherst, Massachusetts. Welcome, both of you, to the program.
JACK ROBISON: Hi.
KIRSTEN LINDSMITH: Hi.
DONVAN: Hi. Jack, you just heard my description of Asperger's. Take a moment and add to it or correct me, or just if I got it right, let me know that, too.
ROBISON: I think that you got many aspects of it. I think the biggest thing is that Asperger's is sort of a way of being rather than, like, a condition that you have.
DONVAN: Mm-hmm. Do you feel the same, Kirsten?
LINDSMITH: Oh, yeah. I agree. I'm - it's been pathologized as of late, but I would consider it more of a type of person rather than a disease. Also just a minor correction, the beginning of the article introduced our ages when we got together. Now I'm 20, and Jack is 21.
DONVAN: You have aged. All right, you have matured and ripened, so that is good for a radio broadcast.
LINDSMITH: A little bit.
DONVAN: So I hear you saying that having Asperger's or not is being tall or short or fat or thin. It's in that sort of category in terms of a way of being. So - but you do talk about, and you have talked about the ways in which it may complicate having a relationship. And I want to talk - let's go to an interesting moment in your lives, your first kiss. Jack, from your side of the experience, how was that? How did it go? What happened?
ROBISON: Well, I guess it was the first night that we spent together, and I was - well, I don't like kissing as much as Kirsten does, but I sort of went along with it. But I don't know. I, the next day, explained my reluctance, sort of, but I tried to play along.
DONVAN: And what was your explanation, if I may ask?
ROBISON: That I didn't like the sensation of it terribly much, and that I was not as enthusiastic as a consequence.
DONVAN: And Kirsten, you're on the other side of that kiss. What was your experience of it?
LINDSMITH: Well, it's - let's see. I have to think about this before answering - that it wasn't really surprising or confusing why he didn't like kissing, because I'd encountered people before who didn't but who weren't autistic. And he basically explained that it felt to him literally what it was, just two people mashing their mouths together, and that it wasn't - it didn't activate, you know, the kind of romantic inclinations it does in other people who like kissing, that it just felt like pushing faces into another face. And so - sigh. But, alas, it's something that comes with the package.
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DONVAN: Well, you seem to like the package. What is this, what we're talking about now, have to with Asperger's syndrome, Kirsten?
LINDSMITH: Well, Asperger's is much more than just social awkwardness. It's kind of often painted as a social nerd disease, where really, it's more of a full-body thing. A lot of autism and Asperger's has to do with sensory differences. And so, for example, people with Asperger's will react differently to stimuli like touch or sound or smell.
And so where the sensation of wetness on a face might not bother someone who's neurotypical, it might seem overwhelming to someone with autism.
DONVAN: I just want to jump on a term that you just used, because I think we're going to be hearing it again. The term neurotypical is a term that refers to everybody who is not in any way on the autism spectrum, typically - those who have a typical neurological makeup or assumed to have such. And sometimes it's shortened to nypical, is that correct?
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LINDSMITH: According to Jack's father. Personally, I don't like the term neurotypical because it implies that if you don't have autism, you are normal. And I think that very few people would be called truly neurotypical, and that even if one is not on the autism spectrum, there might be differences in other areas, people who think differently. Everybody's different.
DONVAN: Right. Who wants to be neurotypical, when you put it that way? Jack, what had been your experience in terms of dating up to this point? We're talking about - so last year, the year before. You were 18, 19. What was your experience in dating up to that point?
ROBISON: Well, I had had a girlfriend pretty consistently through high school, from when I was a sophomore on until the end of high school. And I don't know, I sort of - that was an ongoing one where my friends had, you know, girlfriends for a month or two there. That was what I had instead.
DONVAN: Why was that? What was happening?
ROBISON: Well, I don't know. I got along with her quite well, and so I didn't have a reason to cut it short, and, you know, I don't know.
(SOUNDBITE OF LAUGHTER)
DONVAN: So that's a mystery to you. You didn't get an explanation from when the breakups came that made sense to you?
ROBISON: Well, I don't know. It sort of - it was a sort of stretched-out thing, and yeah. I don't know. It sort of - we sort of grew apart more, I guess, and it became the thing to do.
DONVAN: Did you tend - we mentioned earlier in the broadcast that - your interest in chemistry, and that one of the characteristics of somebody who has Asperger's is to be really quite focused on a few, a set of small topics, but in great depth and to want to share that or talk about that with people who may not be interested. And did chemistry get in the way in that way for you?
ROBISON: Not with her as much, although there - certainly, it was a point of stress for me because it was something that, you know, I care about a great deal, and she didn't really care about it at all. So, you know, I wanted to talk about the things that I thought were really neat that I was reading about, but she didn't really want to hear about it, and neither did my friends, really. So that was sort of a disappointment.
DONVAN: And did you have to learn to take that cue, to take the message that I've got to stop talking about chemistry now?
ROBISON: Yeah, I sort of learned to, you know, talk about it on, you know, forums with people who were also interested in it and not with as many, you know, of my real-life peers.
DONVAN: And is that a difficult adjustment to make?
ROBISON: I wouldn't - I'd say it's more frustrating than anything because, you know, I'll have something in my head that I want to tell everyone about, but I know they really don't care.
(SOUNDBITE OF LAUGHTER)
DONVAN: So Kirsten, what was your story, your dating history before meeting Jack?
LINDSMITH: I have had more significant others than Jack, though not very many. Let's see. When I was about 15 or so, a sophomore in high school, I briefly dated one of my best friends. And when I say dated, I mean that we went on one date and - where we just sat next to each other and ate sandwiches, and it was very awkward. And for the rest of the time when we were dating, we basically did not change our relationship at all from friends because I was so awkward, and he even had to ask permission to hug me.
But - and so that broke off pretty quickly. And then after that, I briefly dated very casually another guy in my class who I didn't know very well, and that was sort of like we went to the movies, that sort of thing.
DONVAN: When you use the word awkward, do you see yourself as awkward, or was the boy involved telling you that you were awkward?
LINDSMITH: Oh, no. I was awkward, as in I can't even really articulate why, but I was - I think I would most articulate it as I was not ready for a relationship. I was still stuck in kind of the childlike mindset of, oh, people will know that I like somebody, and that's bad, that people will make fun of me for liking somebody, and that even somehow even if he were to know that I liked him - like, I didn't want to hug him or kiss him because then he would know that I liked him, even though we were dating and we obviously were supposed to like each other, that it was sort of somehow embarrassing for me.
DONVAN: For both of you, for both of you - and - well, I want to get to this point, Kirsten. You found out after your relationship began to deepen with Jack, that's when you found out that you have Asperger's syndrome. Is that correct?
LINDSMITH: Yeah. I did not know. I didn't get a diagnosis until the summer of 2010, when I was 19. And so I - I suspected when I first started dating Jack, because I knew that he had Asperger's. And so I Googled it, read about it on Wikipedia, learned it was a form of autism, read more about autism, that sort of thing.
And I noticed that I perfectly fit all the diagnostic criteria, which I thought was very interesting. But I was sort of in the mindset of, oh, I must be being a hypochondriac and I - there's nothing wrong with me. How dare I consider myself to have this disease that real people suffer from - because I didn't know anything about it. And it was really Jack who convinced me that I had it. And I sought an official diagnosis.
DONVAN: Was that a relief to know? Did it give you an explanation?
LINDSMITH: Oh, yes, because I - in my kind of efforts to get a diagnosis, I ended up going a few places that couldn't give me one. So I set myself with a therapist who I thought would diagnose me, but she told me that she couldn't. But she didn't know anything about autism, and she just decided to run over the criteria with me.
And she said that she didn't believe I had autism because I have friends, and that she was on the fence. And she asked: What would you say if you didn't have autism? And I would say: Well, I must have something else because, like, otherwise, I'm just broken. And getting a diagnosis really helped me realize that I'm not - there's nothing wrong with me. All the problems that I have, the deficiencies I have are not my fault and that I'm perfectly normal. I'm just a normal autistic.
DONVAN: And I'd like to get a sense from both of you of what that knowledge means in terms of what you actually then do. And we're going to take a break, and I want to ask those questions when we come back. We are talking about love and autism with Kirsten Lindsmith and Jack Robison, and if their story is like your story or your child's, we want you to tell us about it. Our number is 800-989-8255. Or you can send us an email: firstname.lastname@example.org. We're going to have more in just a minute. I'm John Donvan. This is TALK OF THE NATION, from NPR News.
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DONVAN: This is TALK OF THE NATION from NPR News. I'm John Donvan in for Neal Conan. For people like my guests today, Kirsten Lindsmith and Jack Robison, who have Asperger's syndrome, the social cues that help the romantically inclined gauge interest and to fall in love can be mysterious. But there are skills that adolescents and adults with autism can learn that will help them grow into independent adults with fulfilling lives, and fulfilling lives includes love lives.
If you've got a story about dating with autism about you, or if it's about your child, share it with us. Our number is 800-989-8255. Our email address is email@example.com, and you can join the conversation at our website. Just go to npr.org, and click on TALK OF THE NATION.
As I mentioned, Jack Robison and Kirsten Lindsmith are my guests, and we're looking to hear your stories, as well, and we want to start with a story from Commerce, Michigan, and Roger(ph), who is joining us on TALK OF THE NATION. Roger, hello.
ROGER: I myself was an occupational therapy student and did not get diagnosed until my level two of field work, and I had to leave the program afterwards because of it. I'm - and one thing I found is when I attended group therapy sessions, sometimes it's people have a hard time expressing it, sometimes it's reading certain types of behaviors.
And me in my case, I - it was actually I learned that actually when girls are trying to hit on me, that was one of the behaviors that I honestly cannot read, period. And needless to say, that caused quite a bit of complications in my life.
DONVAN: Yeah, we can imagine, and is it something that you were able to make an adjustment to?
ROGER: No, it's something I've never solved it from. Recently, now that I'm 37 years old, I've taken some advice trying out some dating websites and stuff, and it's been a problem that's not been solved because it's, well, hard to tell if someone's interested if I honestly cannot read it.
DONVAN: Well, interesting question. You're talking about face-to-face interaction, and I'm wondering, since you say that you're using Internet sites, does it make a difference if you're looking at text and, you know, you have a little bit of an opportunity to think through the language that's going in two directions? Does it make a difference if it's online?
ROGER: I honestly don't know yet. To be honest, it's because it's first seeing if someone's interested, if someone's online, if someone's on a dating site, you're obviously interested in dating. So if I get a hit, it must be - in some way I know that someone's interested because that's the only way I guess I could find out unless someone tells me they're interested, and through text, they have to tell me they're interested. I can't read the non-verbal cues that other girls, you know, give off.
DONVAN: Right, so you...
ROGER: (Unintelligible) to read and pick up on and I've been told by other people.
DONVAN: So you need to hear the words clearly and expressly stated.
ROGER: They have to say that hey, I'm interested, do you want to go on a date? I guess it would be like that type of direct.
DONVAN: Yeah, I can see where that's going to be a challenge. Roger, thanks very much for sharing your story with us. And it's very brave of you to do that and the same with, I think, Jack and Kirsten to be talking about this and everybody who's calling.
We have an email from Boene Omissar(ph), if I've pronounced that correctly. I'm sorry, it's from Randy Scott(ph) in Houston, who writes: My main obstacle to romance has been the lack of people who understand the personality differences.
When I was young, there was no such thing as Asperger's, and everyone around me simply regarded me as weird. None of my relationships have lasted more than a few months, just long enough for her to get to know me. Now I'm 54, and I'm still single.
Jack and Kirsten, and particularly to you, Jack, are there things as you became aware of your diagnosis and became aware of these challenges that you tried to do to change or to adapt or to adjust to make the communication work better.
ROBISON: I would say that the biggest thing that I - I mean, I think that I made people bored a lot, and I still sort of do when I talk about the things I'm interested in, and that was sort of one of the biggest things that I guess I can say that I actually changed about myself, where, you know, I don't walk up to strangers and tell them about, you know, quadricopter, my, you know, four-propellered helicopter, that I don't think that they're terribly interested in it.
And, you know, instead I, you know, let them talk or, you know, see what they want to talk about instead, and...
DONVAN: You know, I want to mention I happen to know your dad. His name is John Alva Robison(ph), who is - was diagnosed with Asperger's at the age of I think 39, who wrote a bestseller about it called "Look Me In the Eye." He wrote another book called "Be Different," which essentially is a guide for people who have - who are living his life, you know, how to make it work. And he's also now working on a book about you.
And in all of this, he talks about his effort to try to connect and literally talks about studying books on etiquette and looking at films about etiquette to try and figure out what he's supposed to be doing. This is a younger man even before he had his diagnosis. I'm wondering: Do either of you go to that - take those sorts of steps to fill in the gaps on what's on somebody's face as they're talking to you, to try to learn that way?
LINDSMITH: Oh, I definitely do. I don't know about Jack, but I - the Internet is a wonderful tool. I've found myself Googling things like body-language dictionary. And I found a website that has a very comprehensive body-language dictionary, and I learned things like, for example, if someone is talking to you and squinting one eye, that means that they are talking down to you from a superior position, often giving orders.
And I realized that my old boss used to talk to me this way, and I had always assumed he had some sort of facial tic because he would squint one eye when talking. And now that I'm aware of it, I see it everywhere. Even on TV, actors will unintentionally do - will do it, or maybe intentionally, but that I - things like that I pick up on now that I've learned it.
DONVAN: But you needed to be - you didn't just absorb it, you needed to essentially read about it or be told about it, and then you can notice it?
LINDSMITH: Yeah, like I have a slightly easier job reading signals and facial expressions than maybe the more average autistic, but I know that, like, say different types of smiles, I can recognize a genuine smile from a non-genuine smile, or at least I think I can. But more subtle things like the direction that a palm is facing when someone is gesticulating apparently has a lot of meaning that that doesn't come naturally to me.
I can learn it, but that's stuff that I don't pick up on.
DONVAN: Although people who can read don't know that they can read it. I mean, they're not even sure what they're reading.
LINDSMITH: Yeah, neurotypicals probably could not tell you why they knew, like, the person talking to them was being condescending or why they knew that person was just being polite and didn't really like them but was just pretending, but they know it. They couldn't say oh, it was because the corner of his mouth twitched like this and that his palm was facing down when he spoke to me, and things like that.
DONVAN: I want to bring into the conversation now Peter Gerhardt. Peter Gerhardt is chairperson of the Scientific Council at the Organization for Autism Research, and he's the director of education at the Upper School at the McCarton School, which is a school for autistic kids in New York. And Peter, you join us from our bureau in New York. Welcome to the program.
PETER GERHARDT: Thanks, John.
DONVAN: And Peter, you - I need to tell our audience also that nationally, you are recognized as the most advanced thinker on the topic of adolescents and adults with autism, including the issue, especially the issue of sexuality, in part because as you once said, nobody else wanted to go into this field back 25 years ago when you got into it.
And I'm curious, what we were just talking about with Kirsten and Jack, is this whole notion of learning, of learning to be able to navigate love and sex. Is it learnable? Is there a way forward if you find that you have these obstacles?
GERHARDT: It's definitely learnable. It's learnable for all of us if - I think it's probably one of the most challenging skill sets that any of us develop is how to be in a productive, caring, loving relationship. For the, you know, individuals with, you know, Asperger's syndrome, who I work with, it often comes down to just being able to effectively translate your own needs not only to your partner but to the person around you.
Now I know that sounds very sort of psychobabble-ish, you know, but for someone on the spectrum for whom kissing is uncomfortable, like in Jack's case, like being able to say that, you know, understand what the consequences may be but being very comfortable with it, I mean, that's the sort of core negotiating point, I think, that when relationship progress, you have to be more and more willing to discuss these big issues.
DONVAN: And as you say, Pete, for anybody, you know, love, sex, romance is a minefield, and it's very, very easy for anybody to miss cues. But I'm wondering, is it a particular minefield for somebody who's on the autism spectrum, versus other challenges, such as being able to shop and make change and to get on a bus and travel, you know, which, depending on where one is on the spectrum, can be challenging, as well.
Are love, sex and romance more - is there more risk in that field?
GERHARDT: Well, there's more risk in many ways, and it's more complex in many ways because, you know, the basis of a romantic relationship is this social connectedness, is this ability to communicate with your partner, which, you know, may be different for - is different for someone on this spectrum than it may be for someone who is neurotypical, or even two people on the spectrum may communicate somewhat different.
And then you get into the issue of sex, which I think a big issue across the spectrum. It doesn't matter where you fall on the spectrum. I work with guys who have more classic autism, who are less verbal, you know, and they're sexual beings. And how do we address their needs while still being respectful and safe and, you know, professional? It's a very, very complex issue.
DONVAN: All right, I want to go back to some calls from listeners. But first, I want to thank Jack and Kirsten for joining us and for having the, really, the courage to let their story be the one that's kicked off this conversation. Jack Robison and Kirsten Lindsmith joined us from the studios of New England Public Radio in Amherst, Massachusetts. Jack and Kirsten, thanks very much for your time and for sharing this way.
LINDSMITH: You're welcome.
ROBISON: Thanks for having us as well.
DONVAN: Thank you. Thank you. It's a pleasure. And if you like to hear more about their story, you can find a link to The New York Times profile at our website. Go to npr.org and click on TALK OF THE NATION. Again, to both of you, thank you very much for your time today. I want to go then to some callers, and Linda in Oakland is joining us. Linda, welcome to TALK OF THE NATION.
LINDA: Hi. I have a 17-year-old son with autism. I want to make two points: One is not everybody with autism has Asperger's syndrome as Peter Gerhardt just pointed out. And there is no acknowledgement whatsoever of my son's needs to have social interaction with peers, to express his very normal, teenage, adolescent feelings toward others, et cetera. It's really, really, really a big problem.
DONVAN: What are your aspirations for him, Linda? What's his name?
LINDA: His name is Sam.
DONVAN: Sam. So what are your aspirations for Sam in that regard? In the regard of love and being loved?
LINDA: I'd like him to be able to be with peers and have people know how to relate to him, to have people not be afraid of him. If a normal child in his - and I know the normal word is controversial. If a 17-year-old boy in his high school puts his arm around somebody, that's considered fine. My son puts his arm around somebody, he gets an incident report. So there's a lot of non-acknowledgement of the needs of many of these teenagers, adolescents, young adults who may not have language, who may have all the needs that everybody else has...
DONVAN: Linda, I want to interrupt to ask you to go back and clarify something because it's important. When you said, when your son puts his arm around somebody, he gets a - what are people thinking when he does that?
LINDA: They're thinking that he's touching somebody inappropriately.
DONVAN: OK. That's what I wanted to have you come out and say because Pete has strong feelings about that whole issue. Pete, go ahead.
GERHARDT: Well, you know, it's very true. And when I talk to professionals about the issue of sexuality and relationships on the autism spectrum, they often say, well, parents don't want to deal with this, parents are afraid to deal with this. And then when I talk to parents about the issue, they say, well, professionals don't want to deal with it. So what ends up is nobody deals with it, and it becomes, sort of this, you know, elephant in the living room that nobody is really dealing with. So we end up with situations where, you know, for her son, you know, simple physical contact is seen almost as a precursor to a sexual assault, where, in effect, it may be just simple physical contact in most cases.
And - which I think sort of goes back to this, you know, I have a friend Donna, who's on the spectrum, has Asperger's syndrome. And we were discussing social events one time and she commented that, you know, if you neurotypicals have all the skills, why don't you adapt for a while, damn it? And I really started to think that, you know, we wouldn't, I guess - and she said, if I was a person who used a wheelchair, you wouldn't say, well, I'd love to hire you but you have to walk first. And we often do that to folks on the spectrum because we fail to address the issue of translating to the other side. What do neurotypicals know about people with autism? What can they do to better interact? How can they understand this person? I really think we're missing a big part of the equation when we don't do that.
DONVAN: OK. Linda, thank you very much for your call. We appreciate it. You're listening to TALK OF THE NATION from NPR News. Our topic is autism, love and sex, and where they intersect. And we're asking you to tell your stories if you are on the autism spectrum or if you know somebody, if it's your children, close friend, to talk about love and the obstacles to it when - in expressing it when you're on the autism spectrum. And I want to go now to Michael in Fayette, Alabama. Michael, welcome to TALK OF THE NATION.
MICHAEL: Good afternoon. Thanks big time for taking my call. You can tell by my stuttering English already, as in so many other past episodes of TALK OF THE NATION, that I have Asperger's myself, but also adult ADD, very mild - night-time epilepsy, and I'm just getting over obsessive compulsive disorder. Doctor - what is his name again, please?
DONVAN: Dr. Pete Gerhardt.
MICHAEL: Dr. Gerhardt?
MICHAEL: Oh, good. Would you comment on several thing sort of happened in my life that I've written down, how commonplace they are for others with Asperger's syndrome.
DONVAN: Michael, may I interrupt for just a second?
DONVAN: I just want to ask you to maybe go to the top two things on your list, just in the interest of time so that we can answer - thanks.
MICHAEL: OK. Uncomfortability from very early childhood about touching others in, quote, "loving," unquote ways. Reasons will vary from autistic person to autistic person. Those who have merely state ID cards instead of driver's licenses, which affects the viability to just date, period. Those with Asperger's who live in small towns or especially in rural areas, those with autistic spectrums. Affectability to participate actively in weekly group therapy encounter group for - most likely in large cities or medium-sized university town city...
DONVAN: Michael, I'm going to...
MICHAEL: ...hundred miles away.
DONVAN: Michael, I'm going to stop you there.
MICHAEL: And just one more, lack of financial knowledge. Any information, any answers he can give, especially parents of children, teenagers, I'll gladly appreciate. Thanks big time.
DONVAN: Thanks, Michael, for actually that was a great list. We're coming up to a break, Pete, so maybe you want to take one or two of those points and then we'll go to the break.
GERHARDT: OK. Well, you know, I think one of the words that he said, one of the - he said accessibility, and I think that's sort of the key to much of what we're talking about. I mean, it's hard to date if you don't have access to people who you'd like to date. And it's hard to go - he said, it's hard to go on a date if you don't have a car and if you live in a rural area. You know, just being able to access those situations is really critical. And, you know, for anybody like Michael, to be able to then, you know, translate themselves to other people, to explain themselves so they aren't nerds or they aren't geeks or they aren't just weird. That they, you know, they have a neurological difference that results in their acting like this goes a long way to promoting acceptance and accessibility.
DONVAN: I hear in both of our callers so far, a great deal of loneliness, which just hurts.
GERHARDT: Yeah, I think it's sort of the major presenting problem for many of the adults that I work with, is loneliness.
GERHARDT: Now some of them like to be alone, but many of them are quite lonely.
DONVAN: When we come back, we're going to have more with Peter Gerhardt and more of your calls. If you have autism or if your child does, what has gone in the way of love, and how have you navigated around it? Our number is 1-800-989-8255. Or send us an email: firstname.lastname@example.org. We're going to be back right after a short break. I'm John Donvan. It's TALK OF THE NATION from NPR News.
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DONVAN: Right now we are talking about love and autism. And the diagnosis of autism is relatively new. The first known case named in the medical literature, a man named Donald Triplett. He had really good memory and personal - perfect musical pitch, but he had no basic interest in people. He preferred to spin in circles, and he threw crazy, wild tantrums if his parents tried to intervene.
Back then - it was in the 1930s - doctors advised the parents of children with autism to do one thing, and that was to institutionalize them. Donald's parents refused. Times have changed now. These people with this diagnosis along the autism spectrum are integrated into all aspects of society, and they can lead fulfilling lives, with, often, the help of specialists who teach them to read social cues. And that is not something that necessarily comes easily to them.
If you've been diagnosed with autism or Asperger's, or your child has, we want to ask you, what's gotten in the way of finding love and expressing love and enjoying love? And how have you gotten around it? Tell us your story. Our number is 800-989-8255. Our email address is email@example.com. And you can join the conversation at our website. Go to npr.org and click on TALK OF THE NATION.
My guest right now is Peter Gerhardt. He helps adolescents learn the skills that will ease their transitions into adulthood, from how to behave in an elevator to how to navigate in the men's room.
And, Peter, I was just talking about this time before the greater social acceptance of people with autism and people - let's say people with mental disabilities into society, back in the era of institutionalization, which only ended 25 years ago, 30 years ago. Not only were a lot of people, by the tens of the hundreds of thousands in institutions, including many people with autism who were misdiagnosed as having an intellectual disability, not only were they there.
But on this whole issue of love and sex, society had a very clear position. They did not want it happening. And people were forcibly sterilized to prevent the consequences of love and sex, and the sexes were kept segregated in these institutions. And now we're in a new world. But what about the concerns that motivated some of that: issues of birth control, issues of pregnancy, issues of disease, issues of a naive person being taken advantage of sexually, issues of parenting? Are all those part of what you need to deal with and part of what you're teaching?
GERHARDT: Oh, absolutely. Absolutely. And I think today, still, the biggest factor is fear - fear not so much among folks on the spectrum, but fear among those of us who are neurotypical, and some of the issues you brought up about parenting, about disease.
Sexual abuse is a huge issue within the disability community at large, and it's one that the professional community hasn't really addressed and, in many ways, has allowed it to be - continue to be a big secret in the field, the prevalence of sexual abuse.
As individuals get up and - grow up and explore their own feelings and, you know, and then may want to date or be intimate, like without the necessary information to establish a relationship, to understand your body changing, to understand the physical reactions...
DONVAN: The conversations just aren't happening.
GERHARDT: Right, right. It is - it's still, you know, a taboo topic. You know, I've been at meetings where teachers will say, well, when he gets - you know, when he gets a - you know, when he - like when I say, an erection, he gets an erection, and they go, yeah, that's it. And it's - that word is taboo, almost, which drives me crazy.
DONVAN: Well, going back to some emails from you who are writing into us - and thank you again for your calls - we have an email from Denise Lockett(ph). She's writing this: My husband, we think, is undiagnosed Asperger's. He did not date anyone until we met when he was 28 years old. We met, and I was too kind to interrupt him on our first date, and he talked exclusively about his own interests. And right then I almost said that I would not see him again, but I told myself if he asked a single question about me and my interests, I would give him a chance. Just as the date ended, he did ask why I chose to go to law school.
And then she says: Today we have two children and we're happily married. He's gotten much better at communication. Still can't look people in the eye. We have signals at parties and social events when he goes overboard with the talking.
(SOUNDBITE OF LAUGHTER)
DONVAN: That sounds like a great adjustment and partnership to me, Pete. I don't know about you.
GERHARDT: Yeah. Absolutely. And, you know, I'm - I've met a number of fathers and a couple of mothers who got diagnosed when their son or daughter got diagnosed, which, you know, sort of leads me to believe that there's something admirable about being on the spectrum in terms of relationship. There's something attractive. People are getting - you know, neurotypicals are marrying people on the spectrum, and there's - so you know, there's reliability. There's - most people with Asperger's syndrome tend to be pretty honest.
You know, if your husband says he's going to be home at 5:00, chances are he'll be home at 5:00. I mean, there are desirable traits. I mean, it's - yes, it is, you know, a difference from neurotypicality or a disability, but there are still desirable traits that help to support a relationship.
DONVAN: All right. I want to bring in Henry in Jacksonville, Florida. Hi, Henry. You're on TALK OF THE NATION. Henry, are you still with us? I guess we lost him. Our apologies to you. Maria is in Charlotte, North Carolina. Maria, hi. You're on TALK OF THE NATION.
MARIA: Hi. Thanks for taking my call.
DONVAN: Sure. You're on and we're listening, so you can go ahead...
MARIA: Oh, hello.
MARIA: I actually have a son who was diagnosed with Asperger's - mild Asperger's. And based on that, my husband and I, who are both physicians, were also diagnosed (unintelligible) parents with Asperger's. And it's just been such a pleasure to read how much in the literature is out there about Asperger's. My husband and I met in New York City. And our greatest connection was that finally someone got me, and he understood that finally someone understood him. And we really connected very deeply along those lines. Both of us had had just one serious relationship at a time.
We were never into dating. We were in our mid-30s when we met and got married. We became completely immersed with each other. We're no longer together. Eventually we just couldn't quite navigate the misunderstandings that we had when we were - once we were parents. We're still very friendly, but just craved a deeper emotional connection. And I think it's important that your expert talked about how there's such a deep loneliness. Even in a relationship when you are connected as an Asperger, there's still a deep sense of loneliness because it seems as if you just can't quite connect.
DONVAN: Hmm. Pete, do you want to...
MARIA: So I think that with my son, who is diagnosed - he is 13 now. And we're both using what we've learned in our marriage and navigating our own Asperger's to kind of make sure that as he navigates dating and relationships and girls that, you know, we keep the conversation going and that he can learn ways to respect his partner and learn ways to respect his own needs and kind of have the ability to say I need some time off. I need to go away. You know, be open to having that back and forth becomes so easily to neurotypicals.
DONVAN: Maria, thanks very much for your call. Pete, do you want to comment on that?
GERHARDT: You know, I would comment, but really, when she said, you know, that she and her husband were diagnosed as adults and how that was sort of a relief and, you know, the vast majority of adults that I've worked with who came to their diagnosis later in life as adults were thrilled to get the diagnosis, only because now everything made sense. You know, they weren't lazy. They weren't stupid. They weren't ignorant. They weren't arrogant. They weren't incompetent. They weren't wisecracking.
They had this identified neurological challenge. Now, this is going to get kind of complicated pretty quickly because with the new DSM-5 coming out, you know, we're losing the diagnosis of Asperger's syndrome. It's all going to be incorporated under autism spectrum disorder.
DONVAN: Just remind everyone briefly what the DSM-5 is going to be.
GERHARDT: It's The Diagnostic and Statistical Manual of Psychiatric Disorders. It's put out by the American Psychiatric Association, and it's the bible for diagnosis. It tells you how to diagnose any number of psychiatric mental health conditions, and autism spectrum disorder is subsumed under that label in this book. So while there are very good clinical reasons for change - for dropping Asperger's syndrome and just having autism spectrum disorder as the label, I think we're going to have a cultural problem because there are people who their culture is identified as having Asperger. And you know, there are support groups.
And, you know, they may call each other Aspes(ph) as opposed to a person with, you know, Asperger's syndrome. And I think that's going to be a challenge for many people going forward, and many new diagnosis, that it isn't sort of a - I can now understand myself because of this separate category.
DONVAN: A couple more emails. This one is from Eric: I'm from Red Bluff, California. I'm 39 and a half years old. I will be a 40-year-old virgin in September. I dated once, when I was 32. Thankfully, she broke up with me the following Tuesday from a weekend date. Other than that, I have had no love interest where the love was reciprocated. I did not expect to ever find love. I do not believe I could be loved. That is all.
This is from Amy in Burnsville, Minnesota: My daughter is 24 years old and has high-functioning autism. She's highly trusting of others, particularly of young men, and does not always accurately predict the behavior of others. This places her at risk for being manipulated into harmful emotional, physical or sexual situations. And because she uses the Internet a lot to talk, in quotes, to people, so she's at risk for Internet predators. It is very stressful for us as parents. She's basically concerned that her daughter is too trusting to be out there.
GERHARDT: You know, it really is a big problem, and it's complicated again by the fact that this is an area that professionally we know very little about, about how to teach people to understand this social nuance, how to understand the motivations about how to keep yourself safe, like, you know, simple things. If you go to meet somebody that you met online, like, bring somebody with you or, you know, always have your cellphone with you or, you know, very common sense things. But because the person is on the spectrum, we sometimes tend to not even address it on that level.
DONVAN: All right. One more caller. I want to bring in Miranda from Birmingham, Alabama. Hi, Miranda. You're on TALK OF THE NATION.
MIRANDA: Hi. Thank you for taking my call. I'm so overjoyed to hear your topic today. I am the mother of a son with Asperger's. He's nine, about to be 10 in a couple of weeks. And as he's reaching adolescence and growing out of being, you know, as he's becoming more - having more social situations, I've been thinking a lot about this topic, love. In particular, will he find love and how will he react to social situations for the rest of his life? He has taken a social skills class that I enrolled him in last year. He has a best friend now, so he's definitely progressing. But as far as affection, I'm definitely finding that interesting because, you know, we laugh - he just walks up - the way he loves on us is he just kind of walks up and lets us hug him. You know, it's all on his own terms. But the topic is just fascinating because I'm a very social, affectionate person, and I've definitely had to tailor that around him.
DONVAN: All right. Miranda, thanks very much for sharing your story. I want to go Darier(ph) in - sorry, Daria(ph) in Brewster, Massachusetts. Hi, Daria. You're on TALK OF THE NATION.
DONVAN: Hi. You're on the air.
DARIA: I'm an occupational therapist. I work in the schools, and this is a great subject, and I'm glad that you're bringing it up. And you're right. It's often taboo. But we - I actually co-run a social skills group, and a lot of the kids in the group are on the spectrum. Some aren't. And this subject does come up quite a bit, subject of dating and how you can tell somebody that you like them. And I found that - we do social skills training. We do actual - we'll write social stories and we'll write a script about a specific situation, and we'll do role playing so that the student can feel comfortable about communicating that they're attracted to another student. And I found that it actually - it helps a lot to kind of do that practice beforehand, and I will actually, you know, role play with the student or he'll role play with other students in the group.
DONVAN: You're talking - you're listening to TALK OF THE NATION from NPR News. Daria, thank you for your point on that. And Pete, you know, it comes out - she's involved in this work, and it suggests that there are programs, that there are steps to take. For people who are listening, either adults who are on the spectrum or for parents of kids, many of whom we've heard from today, what do they do? Where do they go? How do they get help?
GERHARDT: Well, if you can find other people with Asperger's syndrome who are in relationships, those are probably your best guides, because they've sort of been there and done that, so they can sort of give you, you know, information straight from their experience. There are people who do similar things that I do, where the previous caller did, like looking at social skills groups. I mean, I really do think - probably the best set of skills that I can try to give anybody are self-advocacy skills, which include, you know, dating skills and being able to be safe and how do you - again, I keep coming up to with this word translate. How do you translate yourself to another person so they can understand you more?
DONVAN: But what do you mean by that?
GERHARDT: I think oftentimes, because our perception in the neurotypical world of somebody on the spectrum, especially somebody with Asperger's syndrome, is that they're - they can be arrogant. They could be rude. They can be inconsiderate. We don't think of them as actually having a neurological disorder because they're so verbal. But if someone can actually say, by the way, this is why and I need your feedback to help me do this, now all of a sudden we can understand that behavior in a way that makes it much more acceptable, much more normative. So being able to understand yourself in that way, whether you're in a romantic relationship or not, you know, is critical.
And I do want to do very quickly just - I want to point out again this whole spectrum issue, that it's not just, you know, adults and adolescents with Asperger's syndrome. You know, people with more classic autism like I work with at, you know, the McCarton School and a couple of other programs, the PAAL program that I work at, you know, they want friends and they're capable of friendships too. It just is the amount of effort that the neurological - neurologically typical community has to make to become their friend.
And one of the really nice things that I think about having a friend on the spectrum is that if you ever find in the spectrum - if somebody likes you and they're on the spectrum, they just like you. Like, they're not after your hot sister. They don't want your cool car, like, you know, there is something pure about that relationship that I think is valuable. And unless we take the time to find it, to encourage it, to support it, I think we're missing out on something big.
DONVAN: But I hear in everything you're saying you feel you have a very, very long way to go.
GERHARDT: A long way to go, yes.
DONVAN: All right. Well, we're at the beginning. Pete Gerhardt, thanks very much for doing this part of it. Pete joined us from our bureau in New York. He is chairperson of the Scientific Council for the Organization for Autism Research. He is also the director of education at the Upper School at the McCarton School, which in New York City is a school for autistic children. Tomorrow, we will be talking about second opinions. When you receive a diagnosis from your doctor, sometimes it's best to check in with another doctor or several other doctors. But it can be hard to do. Join us for that tomorrow. This is TALK OF THE NATION from NPR News. I'm John Donvan in Washington.
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