Amy Gravino is a specialist in dating, relationships, and sexuality on the autism spectrum.
00:00:01 Johnandrew Slominski
Welcome to another episode of the Autism Annex Podcast, the monthly show that brings you insights and real-world expertise from the worlds of autism and special education. I'm your host, Johnandrew Slominski.
00:00:18 Johnandrew Slominski
If you've been on Netflix lately, you may have noticed a new hit show called Love on the Spectrum, which follows real adults with autism as they navigate the world of dating and relationships. The characters experience, successes, failures, and everything in between. And one of the messages in the show that is strongly implied but never stated outright, is that romantic relationships are profoundly different for people with autism. Before there was Love on the Spectrum on Netflix though, there was my guest, Amy Gravino.
00:00:57 Amy Gravino
Hi, my name is Amy Gravino, and I'm a relationship coach in the Rutgers Center for Adult Autism Services and an autism sexuality advocate and professional public speaker.
00:01:06 Johnandrew Slominski
Amy, you've spoken on the Ted Talk stage where you've talked about a letter that you wrote to your younger self. How did that letter come about, and how have people reacted?
00:01:18 Amy Gravino
Sure, bsolutely. So in 2008, I believe it was, I wrote a letter to my younger self and was at the behest of a mother who had been reading my blog and she sent me an e-mail and she said that her nine-year-old daughter had just been diagnosed with Asperger’s syndrome. Then it was still Asperger's in the DSM before the newer vision came out. Now it would be autism level 1. And they didn't know any older girls or women on the spectrum, and she thought it would be a great way of giving advice to her daughter and to all the other young women, all the all the parents as well of young kids on the spectrum. And I wound up taking it on the road and reading it at speaking engagements that I had back then. And it's one of the hardest crowds you can ever speak to is a group or 300 6th-graders and 300 8th-graders, and they came up to me afterwards like I was a Beatle—like I was Paul McCartney. And they were just so over the letter reached them.
00:02:12 Amy Gravino
And the thing about the letter I found over the years is that it reaches everybody in various audiences, you know, kids, adults on the spectrum, neurotypical, or like there's just something about it that connects with people.
00:02:27 Johnandrew Slominski
For those who haven't yet read your letter, what did you write?
00:02:31 Amy Gravino
The basic thing was just letting my younger self know that she had value and that she mattered and deserved to take up space in the world, which is something I had a very difficult time believing and really feeling deep inside. I thought, I saw myself as worthless. And my self-esteem was pretty much nonexistent because of the bullying I was experiencing. And either bullied or ignored. It was kind of a running contest as to which was worse and just feeling like I didn't know how I was going to live through all this because it seemed like life was going to be this way forever.
00:03:04 Amy Gravino
Letting that little girl know that I haven't forgotten that, like, she's still a part of me. You know, so when I give my presentation , and I talk about my experiences in elementary school, I've reliving traumas that I experienced, and I'm reliving what I felt when I experienced. And it’s very painful still. You know, I sometimes end up crying when I give these presentations so that, that's always going to be a part of me. And I've been trying to heal that little girl for the past 25 years. And the letter was a part of that, was a part of that catharsis, I think just like letting that young girl know that she was going to be OK. You know, when you're a kid, you look on a TV, your movies, and you see characters and people that are like you and that you can relate to.
00:03:48 Amy Gravino
And there was no one that I really related to there. You know, one that one of the few that remember was Amelia Bedelia from the books, the Amelia Bedelia books. Like you tell me she's not autistic and I'm like, I could tell you that you're a liar because damn well she is. And the other place where I saw people like me was the TV show, The Rock in the Sun. And it was the characters who were aliens. The way they responded to things, reacted to things. I was like, That's how I react to things, but they're aliens, so what does it say about me? And, you know, I just I just always had that feeling of taking that I didn't belong.
00:04:25 Amy Gravino
And so I wanted to let my younger self know that you, you do belong. You'll find where you belong. It's going to take a while but you'll get there. So hold on and don't give up.
00:04:35 Johnandrew Slominski
Since you were that little girl, the recipient of your own letter, you've published articles, spoken on the international stage, earned graduate degrees, and from an outsider’s perspective, anyway, you've really hit your stride, if I can say that. Have things changed for you?
00:04:54 Amy Gravino
I mean, a lot of things have changed. You know, the funny thing is, I always thought the world would have to change drastically for me to fit in. And the thing of it is that the world is kind of the same. I mean there are definitely things that changed I think things are a lot easier now for autistic kids than they were when I was a kid, and in certain ways. Because of an awareness of autism that exists now that didn't when I was a child, but what I—what has really changed is me. I've changed. I mean at my core, I'm still me, I'm always going to be me, but I'm not the same person I was when I was 11, 9 years old. You know, and it's been a gradual process of supplanting and replacing the voices in my head that were the voices of my peers and other people telling me that I was ugly and a psycho and a retard and worthless.
00:05:44 Amy Gravino
Replacing that with my own voice took time to develop that, you know, as my confidence began to grow and again the way my confidence, grew, like I wish I could say that it was a magic wand I waved, but that's you know, not how it works. It was definitely a gradual process. We have to hear about people on the spectrum, especially women, engaging in masking, and I I'm a failed masker. I'm constitutionally incapable of being anyone other than myself.
00:06:09 Amy Gravino
So I tried to do what my peers were doing and it never was right and never looked right. And it was so freeing to, you know, finally to be who I was, that I could not do all through elementary, middle and high school. I just couldn't.
00:06:22 Johnandrew Slominski
As a woman with autism, I imagine you're keenly aware of the schism between autism diagnosis for men or boys versus women or girls. What is that discrepancy like and how would you describe the experience living in that gap, so to speak?
00:06:42 Amy Gravino
Yeah, I think well, the, you know, the original diagnostic criteria that were developed to diagnose autism were developed observing boys. That was who Hans Asperger was looking, at who O'Connor was looking at. And so that that, you know, that was decided that that was what the presentation of autism was, not having regard for how autism might present differently in girls and women, how it might present differently in people of color or people from other background, or you know any other background than being white and male.
00:07:09 Amy Gravino
Many women I know were not diagnosed until their 30s and 40s, even beyond. There are a lot of women on the spectrum out there and I don't believe that the diagnostic ratio reflects how many there truly are. I think it's just a reflection of our ability to recognize it and categorize it. Imagine going through your life not knowing this important piece of information about yourself, about who you are. You know, that's, and you have all these questions, you know they're different. You don't know why. That leaves scars on a person, that influences how a person sees themselves and sees their value and worth in in the world.
00:07:47 Johnandrew Slominski
Amy Gravino, you've crafted this specialty in relationships, dating, and sexuality on the autism spectrum. Could you talk more about how that began?
00:07:59 Amy Gravino
So that's a great question. When I look back kind of at my life, there's a thread weaving through it that I see that kind of led me to where I am now and it's sort of began because as you know, I mentioned how I was bullied in school and I wound up, you know, going to the Internet to be able to be myself and make friends and to be able to access my sexuality, which I didn't have an outlet for in the real world.
00:08:21 Amy Gravino
And so I began reading erotic fiction at the age of 14, voraciously reading it and writing it as well as a way of again assessing my sexuality and figuring, you know, things out. And I wound up kind of becoming the designated smut writer for our little group of friends. They'd say write me a story with AJ and I'd write something as far as my 15-year-old virginal imagination could stretch, which is pretty far to be fair.
00:08:45 Amy Gravino
I've always felt comfortable talking about sexuality. I never felt kind of a sense of shame or stigma, which I think many people on the spectrum—we don’t naturally feel ashamed of things until we're told that we should feel ashamed. I think and so it was never something I felt uncomfortable with and talking about. And when I started graduate school, I knew I wanted, you know, I have a master's degree in ABA, and I wanted to focus my work around adults on the spectrum because of that lack of supports and services that I just mentioned. And so for my thesis study, I designed a study to help two adults on the spectrum, two men diagnosed with autism level one, learn how to ask someone out on a date. In 2013, that was when I began presenting with Peter Gerhardt on the subject of autism and sexuality. He's been doing this for many, many years and you know, we did it and he did the clinical side and I did kind of the personal side and talked about my experiences with dating and relationships.
00:09:41 Amy Gravino
And then over the, you know, the last nine years I've developed my own presentation and the need has grown exponentially each year. Every year and every conference I present at there's more and more people in the room to where it's like standing room only now, practically, because people are suddenly realizing, “Oh, crap, autistic kids become autistic adults.” Like, who knew that that's what happened? You know that this is something that has to be addressed.
00:10:05 Amy Gravino
But I'm happy to share, and you're the first one getting the news as a media outlet that we applied for a grant, a $25,000 grant to create a curriculum, a sex ed curriculum for students on the spectrum. And we found out yesterday that we got the grant and it's my first grant as a principal investigator. So I'm very excited.
00:10:26 Johnandrew Slominski
Congratulations!
00:10:27 Amy Gravino
Thank you so much.
00:10:28 Johnandrew Slominski
So let's talk about this sex ed curriculum for students on the autism spectrum. What can you tell us about what it's going to look like?
00:10:37 Amy Gravino
The key feature of this curriculum is that it's going to be a living document. It's going to be informed by the people that it's meant to serve. You know we want, we're going to engage in collaboration with people on the spectrum in building it. So that's, you know it, it's so important, I think, that that takes place because the last thing you want is, and I'm not neurotypical, but you don't want a bunch of neurotypicals writing a sex ed curriculum for autistic people. That collaboration I think is essential.
00:11:06 Johnandrew Slominski
So research has shown that the vast majority of students with developmental and intellectual disabilities typically have no access to formal or informal sexuality education. Is that true in your experience?
00:11:25 Amy Gravino
Yes, because for neurotypical students, it's typically opt-out. So it’s assumed that neurotypical students are going to receive sex education. But for students on the spectrum it's opt in. It’s not assumed that an autistic student will receive sex education and so parents have to choose for them to get it. And not that many parents necessarily choose for their child to receive sex education or think that they may need it, and even if they do choose it, it's not consistent across the different states.
00:11:55 Amy Gravino
It's not even required to be medically accurate in every state in the country, which is insane, and some states have the abstinence only curricula which you know is not helpful in any realistic way, and so you know, I because I remember from my own experiences in health class we learned about the basics of biology and anatomy and things like that, pregnancy, STD's. But it's the social piece that is often very challenging for people on the spectrum.
00:12:19 Amy Gravino
That's the piece that's really often missing and the life skills stuff. And I think that, you know, very much in the same way that curb cuts wound up benefiting not just wheelchair users but people with strollers, people with mobility issues. If you had this life skills stuff in a sex ed curriculum, it would benefit everybody, autistic students and neurotypical students alike. So that's what I'd really love to ultimately see is that this be something that's embraced by the wider community, because it would benefit everyone.
00:12:48 Johnandrew Slominski
Well, I'll be looking forward to hearing more as the curriculum develops. You mentioned the social side, too, of a sex education curriculum and as a non-expert in that field, I'm curious, what does that entail and where do you start?
00:13:05 Amy Gravino
I mean, I think you know that that the first thing, one of the building blocks you know is definitely bodily autonomy and setting of boundaries. That's something that is often very difficult for people to acknowledge when it comes to individuals on the spectrum because, you know, many people we have to you have to be here doing this when we need doing that and that, you know, kind of sets the tone that somebody's personal boundaries don't matter, that you can just touch somebody whether they want you to or not.
00:13:33 Amy Gravino
And that's really dangerous in the long run. And then when they get into a relationship or dating situation, you know, they may think, well, I don't really want to have sex with this guy, but it doesn't matter what I want, so I'll just have sex with him. We have to you, you know, “No” is a complete sentence, right? No is a complete sentence and we are not great at acknowledging the “no” of folks on the spectrum you know and it's often attached to cultural norms as well.
00:14:00 Amy Gravino
We take someone over to the grandparents’ house, OK. You know, kiss Grandpa. I don't want to kiss Grandpa. Too bad, you got to kiss Grandpa. And that is telling somebody, even if they're just five or six years old, that their boundaries don't matter and they have to do what somebody in a position of authority tells them to do. Obviously, we don't want that in every situation, so it's a safety skill if nothing else, and I think people tend to get freaked out when they hear the phrase sex education because they think that we're teaching autistic individuals how to have sex, and we're not.
00:14:29 Amy Gravino
We're teaching autistic individuals how to live life. That's what this is about. And if you want to keep somebody safe. If that's what you ultimately want, then you will give them this information and you'll empower them to make the same choices as their neurotypical peers.
00:14:44 Johnandrew Slominski
Amy, for parents and caregivers of young people who are going through puberty and young adulthood and are maybe experiencing all of the new things that come with that transition, what advice do you have?
00:14:56 Amy Gravino
Well, sometimes I think that a lot of the reluctance on the part of parents to address these issues is because they're concerned about not having the answers and thinking that they need to have an answer for absolutely everything and it has to be the perfect answer. I see the same reluctance the BCBAs and with the clinicians who work with individuals on the spectrum. And the fact is, is that nobody has all the answers to this. We're learning things all the time about sexuality. That's why I don't even like the word expert. I don't use it because I don't think anybody is truly an expert in this area. I call myself a specialist, you know, but I'm; our knowledge of autism is changing all the time on our knowledge of sexuality is changing all the time.
00:15:35 Amy Gravino
And one of the kind of most powerful things that you could say to your child or your client is, I don't know. And I've said it before, I've said, you know, I don't know the answer to that question. Let's find out together, you know, it's OK to not know something and because it lets, you know, so it lets people know like, you know, no one has all the answers. We all have to find out a lot of this stuff together.
00:15:59 Amy Gravino
And so I tell parents like, don't be afraid of not knowing something. It you know, it's OK to not know. It's OK to need to look something up or to find out an answer to a difficult question, you know. And it's a journey that everybody goes on. The in the autistic person is going on the journey, going through puberty and growing up and dealing with these things. And then the parent is on a journey as well by having never perhaps addressed some of these things before.
But I offer consultations as well for families and individuals on the spectrum and organizations and schools and things. And so if parents ever have any questions, they can always reach out to me. You know, I do zoom consults and I'm happy to help, you know, walk people through that and offer any advice I can.
00:16:39 Johnandrew Slominski
For neurodiverse people grappling with relationships and sexuality, coming full circle here to that letter you spoke about earlier to your younger self, what message would you want for them to hear?
00:16:54 Amy Gravino
I would say, you know, you're more normal than you think you are, and you may look around and feel like everybody else you know is handling this so much better than you are, that they've got themselves together and they're not falling apart the way you might feel like you're falling. And they're not. They’re as much of a mess as you are. They just maybe if they're not typical, they learned how to hide it better. How to deal with it better. They have sometimes an innate understanding of certain things that we as autistic people have to learn, you know, kind of manually. And don't be afraid to, you know, to make a mistake either. That's really the truest thing. And I could sit here and tell you all about what it's like to have. A broken heart. But the only way to learn how to handle having a broken heart is to have your heart broken. It may hurt a hell, a whole heck of a lot but it doesn't define who you are either. The mistakes you make, you know, anytime you fail, it doesn't mean that you're a failure. It's just a part of the process. It's a part of just going through life. And you know, you deserve to have the opportunity to do that as much as anybody else. And you, you know, you have value as who you are, and don't settle, you know, for somebody who's not going to see that value.
00:18:07 Amy Gravino
You're allowed to have standards, you're allowed to be picky, which I never knew I was either. And you're allowed to have a say in who you let into your world. You know, I think again we autistic people to think if someone pays any attention to us, we have to accept it and be all over it, because maybe nobody else will want to be our friend or nobody else will want to be your boyfriend or girlfriend and and that's not true. And as time goes on you, you'll have to start to learn to differentiate between those types of attention. When someone's paying attention to you because they actually care about you and want to be with you versus when they’re paying attention to you because they want something from you. And that's a hard distinction to make. But they're not the same, and you deserve someone who genuinely likes you and cares about you and respects you for who you are.
00:18:53 Johnandrew Slominski
What an empowering message. My guest today is Amy Gravino, speaker, author, and autism sexuality advocate. You can learn more about Amy and her work at amygravino.com. Thank you so much. It's been great to meet you, Amy.
00:19:12 Amy Gravino
You too, Johnandrew.
00:19:15 Johnandrew Slominski
You've been listening to the Autism Annex podcast developed by Star Autism Support. I'm Johnandrew Slominski and as always, it's been my privilege to be your host today. Thanks as always to you, listeners, for tuning in and for subscribing to the Autism Annex Podcast. If you like what you hear and haven't yet subscribed, please do so and consider leaving us a review. It really helps new listeners to find us. Until next time, my friends, take good care of yourself, and one another.