What Parents Should Know About Autism & Sexuality, with Amy Gravino | EDB 169
Dr. Hackie Reitman talks with “The Dr. Ruth of Autism”, Amy Gravino
(27 minutes) Amy is a certified autism specialist, autism consultant, and columnist. She is the founder of A.S.C.O.T Consulting, LLC, and is also a seasoned public speaker, having spoken at conferences, professional development workshops, support group meetings, and more since the age of 14. She is currently working on her first book, titled The Naughty Autie. Amy discusses her diagnosis, the deficit in sex education for people on the spectrum, and some of the challenges women with autism face in the community.
For more about Amy: www.amygravino.com
And click here for Amy discussing autism and sex on the Spectrumly Speaking podcast!
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FULL TRANSCRIPTION
Amy Gravino: The “Dr. Ruth” of Autism
HACKIE REITMAN, M.D. (HR): Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains, and today, we’re very honored to have the founder of ASCOT Consulting, Amy Gravino, who is, they say, the Doctor Ruth of the Autism Community. Amy, welcome to Exploring Different Brains.
AMY GRAVINO (AG): Hi, Hackie, thank you so much! I’m so happy to be here! Yes, I am the Doctor Ruth of the Autism World I’m very happy to say because I’m short and I like to talk about sex a lot, so that moniker is fitting.
HR: Well, I really enjoyed reading all about you and how you got into this and everything else, and I’m so glad that as a champion and self-advocate, you can set us straight on the bunch of things that I’m sure are our DifferentBrains.org audience really wants to know about. Let’s start with you introducing yourself properly how you’d like to be introduced.
AG: Well, my name is Amy Gravino. I am the founder and president of ASCOT Consulting, which is an organization based in New Jersey, out of which I am a professional international public speaker and autism consultant. I do mentoring services as well for people on the autism spectrum who are not yet going to college or who have been looking at college, and I’m also a certified college coach for students on the spectrum. I currently serve on the Board of Directors of Specialsterne USA, Yes She Can, Inc., which is based in White Plains, NY, and The Golden Door International Film Festival of Jersey City. I’ve given a TED Talk on autism and sexuality, and I’ve spoken twice at the United Nations for World Autism Awareness Day, once in 2011 and also last year.
HR: I don’t think you’re accomplished enough, Amy, I’m sorry, haha, okay. You were diagnosed in the early, early teens or around age 11. Tell us how that came about.
AG: So I was diagnosed when I was 11 years old, and it was 1994, so Asperger’s syndrome had just been added to the DSM that year, so there was not any kind of national consciousness or awareness of autism at that time like there is now. People knew very, very little, and certainly to be a girl and be diagnosed at that point was remarkable. I got to meet with a psychologist who was astute enough to recognize my symptoms and recognize what was happening because we had no answers. My family had kind of bounced from specialist to specialist, and no one really knew what was going on. They even had my hearing tested at one point because they thought I was deaf, because I wasn’t listening to them when they would tell me to do something, and, no, my hearing’s actually great, obviously, but it was autism, and so we just got the right referral, we ended up in front of the right person and I was diagnosed at 11 years old.
Growing up on the spectrum
HR: How did you evolve going from that point forward?
AG: Well, when you’re 11, you know, the word “autism” doesn’t really mean anything, especially 11 years old in the 1990s when autism is not known, when there is not that conversation like I said, so I didn’t have that sense of what that meant. All I had a sense of was that I was different, and as far as I knew different was bad. The way my classmates responded to me, the way they treated me, it was clear that “who I was” was not acceptable, and so I retreated kind of inward. I, you know, a lot of times, you hear about people on the spectrum having meltdowns, and I did have certainly a lot of meltdowns, but I think for boys, they tend to express things more externally, and as a girl, I kind of turned in on myself. I started beating up on myself more than anything, and so I was very, very shy, and again, people… the other reason why I think girls don’t get diagnosed is people think, “Oh, she’s just quiet. She’s fine,” you know, but just because I was quiet didn’t mean I was fine. It was like Woodstock in here, it was so noisy. You know, there’s a lot going on that people didn’t understand, so I just basically, at that point, it was just that “I was different” and “different was bad,” and so, as the years went on, my relationship to the diagnosis started to change and evolve; I hated it, eventually, when I hit my full teenage years. I wanted to distance myself from it. I said, “This isn’t me, you know. There’s two Amy’s. There’s ‘Autism’ Amy and there’s ‘Amy’ Amy, and if ‘Autism’ Amy could go away, everything would be great and all my problems would be solved and I’d have friends.” And so, all I ever saw was as a liability I never saw as anything positive ‘cause it was never frame to me as something that could be positive. There was an absence of role models, even, for someone like me. I mean, I remember the first time I saw a TV show that had characters I could relate to was “Third Rock from the Sun”, and it was the aliens. I related to, you know, the way they reacted to things, the way they behaved, that was like me, but what does that say, if, you know, the only characters you’re seeing like you are aliens?!? So, not the greatest message, maybe, in that regard, but I had no other, you know… even though Temple Grandin has started to become more prominent on the scene, she was much older than I was. I was just a kid, and so that wasn’t someone that obviously I could really connect to at that point, at 11, 12, 13 years old, so the whole process, you know, was very gradual of how I got to where I am now. People often say like, “What was the moment that everything changed?” and there is no magic moment. There is no switch turning all of a sudden and a magic wand waving and your life’s perfect. That’s not how it works. You know, for so long, I wanted self-esteem to be something that somebody would give me. I looked for that validation from outside sources. I looked for it from guys because I desperately wanted a boyfriend. I looked for it from friends, but the place it finally had to come from for it to mean something was from me, and that…
The turning point of when that started was when I was actually filmed for a documentary called “Normal People Scare Me.” It came out in 2005, and it was actually directed by a young man with autism and his mother; they co-directed it. There were over 70 people on the spectrum in this film, and of all of the people who were asked about, as they took the film all over the world to different screenings and events, other than the young man who directed it, the person people asked about most was me, and I was astonished! I said, “What? Me?!” You know, and it was incredible because it was the first time anybody had wanted to put me on a platform like that, had wanted to raise my voice for people to hear, and I suddenly started to feel that maybe my voice can help people. Because even though I started speaking at conferences when I was 14 years old, it never really occurred to me that my voice could be magnified and could be something that could, you know, extend out and help people, so that was kind of that turning point when I realized that that was a possibility, and I started then doing the public speaking professionally the following year, about 2006, so I’ve been doing it now for 13 years, and then each step along the way has been what has helped get me to where I am.
I started graduate school not long after that because I… hehe, so I graduated college in 2005. I moved to Seattle, Washington after I graduated, again, for the worst reason, which is a guy, and I fell in love, got my heart broken, lost my virginity, all that good stuff, and I wound up moving back here in 2007 to go to graduate school, and I started ASCOT in 2010 as an outgrowth of the work that I was starting to do and wanting to be able to cover myself professionally and all that, and the sexuality piece emerged kind of surprisingly because ASCOT was started for me to do college coaching, but I began doing the sexuality presentations in 2012 with Dr. Peter Gerhardt, who is a wonderful friend and colleague of mine, and that has just taken off. It’s gotten bigger and bigger every year. There’s a lot of people doing college stuff, but there’s not a lot of people doing sex, and the need is just growing. All of a sudden, parents are realizing, “Oh, crap! My kid’s not going to be a kid forever. They’re gonna, like, grow up and stuff!” you know, and so every time I do the presentation, there’s more and more people there, so that’s just taking over everything, and that’s become my passion. It’s become what I’ve just really been so interested in, so…
HR: Well, we’re lucky that we have you out there because when it comes to intimacy and sex it’s, you know, it’s like radioactive: everybody treats it like it doesn’t exist. The other thing which I very much enjoyed reading about: your opinions, and I give you a big bravo for this is something I’ve been saying, which is as a society, we have inadvertently discriminated against adults because it’s all about the children.
AG: Yes.
Advice for parents of children with autism on sexuality
HR: Well, and as you say, the children grow into adults, and we have to be prepared. Now, I want to take it from a couple of different perspectives because of your unique perspective, I want to break it down into what advice would you have for parents? Like, tell us what advice you have for parents of a young female autistic spectrum individual.
AG: Well, I get questions asked to me a lot by parents of those girls, and when I see these girls, because I see them at the conferences or I see them in other environments, I see myself in them a lot, and I just want to protect them and, you know, keep the world from hurting them because I know what’s out there and what’s waiting for them, but I also know that if you put somebody in a bubble to ensure that nothing will ever happen to them, nothing will ever happen to them. That’s not how you survive in this world. You do not survive by having no skills and having no knowledge of what the world is really like, so I would tell people, “My parents did the most important thing, which was they let me go off and get my heart broken.”
Obviously, they didn’t want to see that happen to me. Obviously, it must have been, you know… the day after I lost my virginity, I called my mother and told her. Like, I’m sure that’s not a phone call she thought that she was ever going to get from 3,000 miles away, but that’s how close that we had become that I was able to confide in her and tell her that, and so when I got my heart broken and all those terrible things happened, obviously it was devastating. No parent wants to see their child in pain, but you can’t learn from mistakes if you don’t make them, right? So I say to parents… you know, people would want to be like, “Oh, I don’t want to have to tell my child about sex because they’ll wanna go out and have sex, number one, and number two, it’ll take away their innocence,” and I say, “Well, first of all, no. Autistic people are no more likely than anybody else to fall head first into an orgy. It doesn’t work that way,” but if you don’t give somebody information all that’s going to do is leave them very vulnerable, very vulnerable to being assaulted, to being abused and taken advantage of, ‘cause they’re not going to know how to protect themselves, so giving someone that information, especially young women, is so, so crucial. Like, that’s how you protect somebody is by empowering them. You empower them with that knowledge and that information. You tell them what sex is. You tell them what abuse is, what does it look like, who can do it to you. There are so many different kinds of abuse, and abuse is often very subtle.
You know, that’s something that I didn’t understand for a long time because, well, we think about it, we think about, you know, somebody hitting someone or more physical, outward displays, but abuse can be verbal, it can be emotional, so letting people know what that looks like and who do you tell if it’s happening to you, how you get help. We have to tell our young women this, and we have to also, I think very crucially, let young women know that they can have standards. This was another thing that I did not understand. I thought, “Any guy who paid attention to me, I had to go right after him because maybe nobody would ever want me again, and maybe nobody would ever pay attention to me again,” so I had none of that sense of “I’m allowed to be picky. It’s okay not to go after the first person who looks at you,” and it took a long time to get to that point, but to just let your girls know… and just because, also, someone pays attention to you, it doesn’t mean that they actually care about you. They may just want something from you. I never could differentiate between that for the longest time. I didn’t understand, you know, that maybe somebody is paying attention to me because they’re trying to get something from me, not just because they really like me, and when you’re not differentiating between that, you know, when you’re so desperate for that attention and that validation, you don’t realize that this is not the kind you really want, so letting young women know about that and not to rely on their self-esteem from others as well, I think, is so crucially important, so there’s a lot of things I would tell parents, you know, regarding kids.
Amy’s advice to young women on the spectrum
HR: That was great! That was excellent. Now, what I want to do is shift perspectives. You just gave great advice to parents. Now, let’s shift it to now… let’s talk to those young women in our audience directly who are at maybe the age you were when you got diagnosed, maybe a few years or older, now talk to them.
AG: Right, well, I would tell them, you know, a lot of what I just said – very similarly, that you are worth so much more than what anybody is – can ever say, nobody could ever tell you what you’re worth, only you can determine that. Absolutely, it’s not up to anybody except you, and if somebody is trying to tell you that you need to do this, you need to do that for them to like you, then they don’t- they’re (scoffs) they don’t really like you. They want a version of you that isn’t really who you are, and you should not have to alter who you are so fundamentally just make someone else happy. Do not ever do that! It’s hard to figure out who’s worth your time, because when you have so much emotional feeling for somebody, you feel like you want them, you know- you feel that they’re worth your time. So you feel that they should feel the same way, and it’s hard to differentiate sometimes, your feelings from their feelings. But don’t conflate to- you may feel very strongly for someone, you may even fall in love with someone, but don’t also assume they’re in love with you, and I know that’s hard. But I’ve been there. I’ve gone through this, and you shouldn’t ever waste your time, or make someone a priority who was only making you a second choice. That’s not what you deserve. You deserve better.
HR: Let’s shift gears a little bit then. Let’s talk about something very easy, he said sarcastically!
AG: I don’t mind talking about the hard things are the most important to talk about sometimes.
HR: No, but I was just being facetious, because there’s nothing easy! Nothing easy for any of us! Whether autistic or not, but it doesn’t mean we shouldn’t have fun, and laugh about it, and tackle these problems head on.
AG: Of course.
Autism, sexuality, and gender differences
HR: Tell us from your perspective, and what you’ve been able to learn on your speaking tours and all of your scholarship and learning and everything; give us from your very knowledgeable perspective where gender and sexuality meet if I could.
AG: Oh, well sexuality is a very large spectrum, and there’s just as much diversity among sexual orientation and gender identity in the autism community as there is in the neurotypical community. There actually tends to be a higher componderence?? in people on the spectrum who identify as LGBT than in the neurotypical community; but that just may be due to honest reporting from autistic individuals who just tend to not feel, you know, they tend to not attach that stigma or shame to other sexual orientations outside of heterosexual or other gender identities outside of cis gender, so there’s just more honesty in the self reporting that people give, and they are different things, it can be, you know confusing things, you know when we talk about the difference between gender identities, sexual orientation, someone presents gender presentation, so those things can all be confusing, but they’re all apart of how we establish our identity, and how we look at ourselves as sexual beings, and a lot of times, parents especially, I think become uncomfortable when the conversation around sexuality goes into those realms, like if someone identifies as LGBT, or outside the gender binary, you know, people don’t know, don’t know what to say or what to do, and I always say to people, “think how hard it is just to be someone who’s divergent, who’s on the spectrum, trying to be who they are in a world that’s not built for us. Imagine if you’re LGBT on top of that, so to- it’s a double stigma that a lot of folks are facing in that regard, which is very challenging. But they need just as much support, and they need a safe place to be able to be who they are. We all need that, obviously, but it’s that much harder if you’re somebody who identifies as LGBT in addition to being on the spectrum.
Educating the public about women with autism
HR: Gotcha. Okay. What is the single biggest misconception about autistic females that the general public and the overall autistic community might have.
AG: Well there are a lot of misconceptions- I think one unfortunately is that we exist, you know there are a lot of people who still think just because you’re a girl, you can’t be autistic, and that’s not true obviously. But there’s such a- you know, a lot of times girls have a hard time finding support in autistic spaces, because they’re so male dominated. So you’ll go to a support group, and there’ll be like four times as many guys as there are girls, and for me, you know, I remember going to these groups, and I would either get hit on, or I’d get treated like I was an alien, and I wasn’t there for either of those things, and I was not comfortable to be a woman there and be kind of treated that way, and a lot of time, you know, what ends up happening, for guys on the spectrum most of their caregivers are women. Right? Their mom, or the aide at school, the teacher, the paraprofessional, whoever- it’s all women. So they start feeling like, “oh, woman, female is someone who will take care of me”, and they go and they meet an autistic girl and think, “oh, you could be my girlfriend!” and it’s like “ woah, back off” you know what I mean? That’s not- I’m here, I’m a human being, I’m not just here to be your girlfriend.
You know, and so- and I think parents maybe unwittingly perpetuate that in some ways, I’ve heard stories from mothers of women, I know who- the parents of an autistic boy will try to get her to date their son, and it’s like “No!” Like, you don’t get to do that to someone. We’re autonomous human beings, we’re not just potential girlfriends in waiting for autistic men, and our purpose, you know- again a lot of times I think women on the spectrum end up in the caretaker roles, we end up- we kind of end up taking care of other people before ourselves, so our own needs end up getting neglected, and then women, a lot of women, mask a lot of their symptoms to try to get by, because it’s not acceptable to be autistic and a woman a lot of the time, so then people will say “well you can’t really be- you’re so high-functioning, or your friendly and you smile”- but all that is because of how women are socialized in our society. we undergo a completely different set of socialization guidelines than boys and men do. So we are automatically, you know, more socially inclined as a result of that, but it doesn’t make us less autistic, and I wish people would understand that.
Consulting and spreading the word for autism acceptance
HR: Well, Amy Gravino, please tell us what writing you are doing, what kind of creative writing are you doing?
AG: Well, right now I’m writing my first book. It’s called the “Naughty Autie”, and it’s a memoir of my experiences with dating on the autism spectrum. But I’ve done a lot of other writing; I’ve written four different publications, I’m in the exceptional… It’s a special education textbook, and written by Bill Hueure, I- I think it’s “Exceptional Children”, it kind of escapes me at the moment, but I’ve had my writing published in a number of outlets, and I just did the introductions for the organization for autism research, their sexuality guide for young adults on the spectrum. Dr. Gerhart and I, we just did the introductions for that, and yeah, I (laughs), I just love writing about this stuff, you know, there’s so much that’s been happening, I’m gonna be doing another webinar with Dr. Gerhart about sexuality for the New Jersey Autism Center for Excellence in the fall, and we just went for Aura last fall. So I hope to keep writing more about the subject, and have my book out as soon as possible.
HR: Well thats great! We want all of our Different Brains who wanna know about it, for sure. Tell us more about ASCOT consulting.
AG: Sure, well I started in 2010, as I say, I go for a certification as a college coach for students on the spectrum from Bank Street college in the city, Dr. Linda Geller and it’s just evolved, as time has gone on because I had people contact me, like I say, their child is not in college, or is not sure if they’re going to go to college, and they’re looking for someone to talk to who was on the Spectrum, and I thought, “you know when I was younger it would’ve helped me enormously to have an older person on the Spectrum to talk to you to see that there is a future, to see what possibly can happen, and so that’s why I decided to add the mentoring component to the Ascott, so that people who are on the Spectrum could talk to me, and then I could give some advice I mean I’m not a psychologist, I’m not a licensed mental health counselor or anything, but- I’m someone who has a lived experience of being on the spectrum, and so I felt that that would be, you know, something that could be really useful to people who are not yet at college, and then the public speaking, like I say, has just taken over everything in the Consulting. So few would you know contact me through ASCOT to looking for a consultant, to get through a school district, or a family wants someone to speak to. I’ve gone down, down to schools and consulted with, you know, people who are working on specific case for students at the school, so I do all different kinds of things like that, but I’ve- you know, my speaking has taken me all over, I was in France in 2017, and then I spoke in Mexico last year, in Cavo San Lucas, so I hope to continue you know, going all over the world speaking about autism and sexuality.
HR: And speaking of all over the world, are you addressing the United Nations?
AG: Yes.
HR: Well there you go! okay, the world came to you.
AG: Yes, so last year’s theme for world autism awareness day was a focus on girls and women on the spectrum. They have a different theme each year, and I was very honored and happy to be able to come back to speak on a panel about that, and the video’s on YouTube actually, you just search Amy Gravino at United Nations, it comes up, but it was great. You know, it’s such an amazing platform; when I first did it in 2011, I was so nervous I couldn’t believe that I was, you know, I was on a panel with someone from the World Health Organization, and someone who’s daughter of the Prime Minister of Bangladesh, like, and me! Why am I here, it was just strange, but you know that was eight years ago, and lot’s changed since then I felt- I always say that I have a nervous breakdown right before or like the day before I’m going to do a presentation and the day of like as soon as I’m up there I’m like totally calm, and that was how I felt last year, you know, the anticipation is the part that just kills me. I hate waiting, just let me get up there, let me get up there, and once I’m there, the room is mine, I own it. So, I was happy to be there again and it was because of speaking in there last year and that Tara Cunningham, the CEO of Specialist Journalists USA, she saw me there and she asked me to be on their board, so it led to a wonderful opportunity, which I’m grateful for.
HR: Oh how cool. That’s very cool. Are there any areas we have not discussed that you would like to discuss?
AG: I think we’ve covered quite a bit actually. You really, we hit all the bases I think, in terms of sexuality, but I will say that I think I just should think it’s a good thing to be scared, because it means that you care. If you didn’t really care about what you’re doing, your performance or your message, you wouldn’t be scared. But- so scaring is caring I think (laughs)
HR: Oh good! (laughs) There’s another one of those built-in instincts that are probably good for you.
AG: Exactly! (chuckles)
Speaking out about autism and sexuality
HR: How can we at differentbrains.org help you to achieve your worthy missions?
AG: Just that I so appreciate that you wanted to interview me, and I -I really am grateful that you’re putting my message out there, and that- that just means a whole lot. Just having your support, knowing you’re in my corner. I don’t know, I just think if you continue to encourage people to have conversations about sexuality and encourage people to speak up on it, and not be afraid of these conversations. I think that’s one of the best things you can do, let people know that just because somebody is autistic doesn’t mean they’re not interested in sex, I mean there are plenty of people who are asexual, who are not interested in having sex, and that’s perfectly okay. But that’s become the stereotype in many cases for autism and sex and that’s not a good thing, and so just encouraging people to look away from the stereotypes, and really start having these important conversations with their children, with our clients, with our students with whatever, and getting us past that barrier so that we can make sure people on the spectrum lead the fullest lives possible.
HR: How can our audience learn more about you?
AG: You can visit my website at www.amygravino.com, that’s the best place to learn all about what I’m doing; I’m on social media as well, I’m on Twitter, facebook, facebook.com/amygravinofanpage, and I’m on Instagram as well, and so you can find me on all those places, but the website I always try to update with all my upcoming speaking engagements, and any media, anything that’s going on, so thats a good way; and I also have a mailing list that people can sign up for, if they go to my website, there’s a form they can fill out to sign up for my mailing list, so if you do that they’ll get all the latest updates and newsletters and information.
HR: Well Amy Gravino, it’s been such a pleasure to have you here at differentbrains.org, thank you so much for everything you’re doing and keep up the great work!
AG: Thank you so much, thank you for having me at Different Brains®. I really appreciate it, it’s been a great interview, thank you so much.
