As a prominent advocate for sexuality in autism, Amy Gravino has channeled her own frustrating experiences and romantic expertise into her dream job. Amy’s advocacy journey began when she was diagnosed with Asperger’s Syndrome (now Autism Level 1) in 1994. Despite challenges associated with her diagnosis, she persevered, earning her degree in Applied Behavior Analysis, and dedicating her career to bring attention to the unexplored topic of sexuality in the autism community. Her advocacy goes beyond raising awareness. She has been at the forefront of fostering acceptance and ensuring that autistic individuals receive the guidance they need to explore their sexuality.

Your work in sexual advocacy and autism is groundbreaking. What inspired you to focus on this often-overlooked aspect of life on the autism spectrum?

Amy: What really inspired me to focus on sexuality was that of course, nobody was really doing it. It’s obviously an underaddressed area and there are really a handful of us who are engaged in the work. When I look back at my life, I see threads that have led up to this point and it makes it feel like I was always meant to talk about this even if I didn’t know it at the time.

I can provide a little bit of my background. I was diagnosed as being on the spectrum at the age of 11 and that is obviously considered late now. This was in 1994 and Asperger’s Syndrome was just added to the DSM (Diagnostic and Statistical Manual of Mental Disorders) that same year. Being a girl, it was even more amazing that I was diagnosed then since it is 3-4 times more likely for a boy to be diagnosed than a girl. Although, I don’t think that actually means that there are 3-4 times as many boys. It’s just that psychology is better at recognizing it in males and presentation of autism can be different in females. That’s another thing we need to get better at recognizing.

I remember when I was going through puberty and adolescence, my sexuality was something that was in the fore and something I was trying to figure out, just like any 13- or 14-year-old. But I didn’t have outlets for exploring that. I wasn’t going on dates. I didn’t go on dates in high school. Boys were too busy calling me names, making fun of my appearance, and didn’t want anything to do with me. I had massively low self-esteem and so the outlet that I ended up using to explore my sexuality was writing. They say that men watch their porn and women read their porn. That was very true for me. I began to read erotic fiction around that age and then write it. I never felt any sense of shame around it. I think that many autistic people don’t necessarily feel a sense of shame about things until someone tells us that we should feel ashamed. It never occurred to me that this was a bad or a wrong thing. It was freeing to be able to write all of this. I would read about all kinds of relationships because it freed me from the traditional gender sex roles of a woman and feeling that I didn’t look a certain way or knew how to do certain things that women had to do when it comes to sexual activity.

Around this time, I was a fan of the Backstreet Boys. I joined a chatroom and I became a designated fan-fiction writer for my friends. I wrote about all the things that my 15-year-old imagination could stretch to, which was pretty far. I continued writing erotic fiction as the years went on.

About 14 years ago, I started a fanfiction site about the band, The Monkees. A friend and I started publishing erotic fiction about The Monkees. At the time, I was just finishing up graduate school for my masters in ABA. For my thesis, we had to incorporate principles of ABA into a project and I chose to teach two adults on the spectrum how to ask someone on a date using video modeling and didactic instruction. At the time, there were really no adult services and those services are still not great now even though they are getting slightly better. In the research literature, everything was mainly about teaching social skills. When you teach something like brushing your teeth, that instruction is pretty much the same every time. A date is different. Every date is different. Every person is different. It’s much more complex. So, while all of my classmates and my professors were focused on early intervention, I really wanted to be working with adults because I knew that there was this lack of services. That was what I was interested in.

In 2013, my good friend and colleague Dr. Peter Gerhardt asked me to present with him about sexuality and that is when I started presenting on it. I’ve been a professional public speaker since 2006. Although, I started speaking at panels when I was 14. One of our first talks that I’ll always remember was at a church, since it was in Virginia, talking about sex. He talked about the clinical side and I did the personal side. A signature, defining facet of my presentations have been talking about my personal experiences. That has been the way into all of this. Of course, I was interested in the topic professionally as well and trying to further the work that I started with my thesis. It’s always been hard to get funding for research related to sexuality. There is so much taboo and stigma around it. There are still a lot of misconceptions about disability and sexuality. The biggest thing to keep in mind is that for at least fifty years, if not more, any kind of sexuality displayed or exhibited by autistic, disabled people, was viewed as aberrant. It was automatically aberrant and deviant simply because it was an autistic person expressing it. We’ve had to work so hard to even move away from that to show that a neurodivergent individual is interested in engaging with their sexuality. It’s not aberrant simply because someone who is not neurotypical is expressing it.

Gabi: Also even adding on to that, I do find it admirable that many individuals with autism can embrace their authentic selves without being constrained by societal norms. This courage is something we should all strive for, and it emphasizes the importance of accepting one another for who we are even if that takes a while.

Amy: I definitely don’t think we are there yet certainly. With this particular area, there are different facets of life where you can go off the accepted track a little bit. In this area, if you do something that violates a social convention, you could end up in jail. It’s that simple. The law doesn’t care if you have autism or not. There is a disproportionate number of autistic people in the criminal justice system labeled as sex offenders when they shouldn’t be. This is partly because they were never taught to understand what stalking behavior is or why you have to respect someone’s boundaries. These issues go unaddressed, and people end up suffering from serious consequences as a result. Individuals with autism are also more likely to be victims of sexual abuse than the perpetrators.

In your opinion, how can institutions, like schools, churches, and other organizations, can educate everyone, including people with ASD, to create a more inclusive and supportive environment in terms of relationships and sexuality?

Amy: I think the first thing is that we have to move away from infantilizing adults with autism. This is when we talk about autistic adults as if they are children in big bodies. People will say things like, “he’s twenty years old with the mentality of a five-year-old.” It treats adults as if they are children and it’s very dehumanizing and very dangerous because it sets people up to be vulnerable. For example, someone can say something like, “If he’s just a child in a big body, then he shouldn’t receive this piece of information because he’s innocent.” It just ends up being extremely harmful in the end.

Churches are a whole other thing. You’re in the south and I can’t even imagine living there because oftentimes some of the attitudes around sex are built around strict gender roles like that women should only be married to men and engage in monogamous relationships. By being a woman in society, autistic or not, society expects us to put the needs of others before our own. It’s certainly been true for me in my early sexual encounters. It has taken me time to learn that my needs do matter and that I am allowed to verbalize them. I am allowed to verbalize what I like and don’t like or if I want more or less. It took years for me to get to that point. For some, it’s just a matter of a lack of sexual education growing up. I understand that. People feel ill equipped and think that if they don’t know the answers to the questions then they shouldn’t even be asking them. But I always say, nobody has all the answers to the questions. If anybody says they do, they’re either lying or they aren’t very smart.

Gabi: I totally agree. I don’t think there ever really is an answer.

Amy: There isn’t always but it’s much better to say that you don’t know then to pretend that you do. The most powerful thing you could say is, “I don’t know,” or “let’s find the answer to that together.” It’s ok not to know everything.

What are some common misconceptions about autism and sexuality that you would like to dispel through your advocacy?

Amy: That actually is something I do address in my presentations, and I think the biggest one, again, is this idea that all autistic people are asexual, which ties into the infantilization piece that I mentioned. It’s that exact thing. You see someone as forever childlike which is conveniently easy for parents who aren’t comfortable seeing their child as a sexual being to begin with. Of course, there are people that identify as asexual or aromantic and that’s completely fine. But when it becomes a stereotype regarding an entire group of people, that is a massive problem. It’s interesting because this stereotype doesn’t apply to all disabled groups. For individuals with down syndrome, for example, the stereotype has traditionally been one of hypersexuality. The opposite goes for autism. The thing I’ve noticed as I keep doing this is that it’s not disabled people who are weird about sex. It’s everybody else who is weird about us having sex. It makes it ten times worse.

Other misconceptions come from diagnostic criteria. There is this idea of a lack of empathy for instance, which I think is completely bogus. Rather than having no emotions, I think we have so many emotions and we don’t really filter them out. There is this idea that if emotions aren’t displayed how they are expected, it means the person isn’t actually feeling them. For example, people think that individuals with autism are incapable of love. That is an extremely painful misconception to me. People on the spectrum express love in ways that may look different than what people expect, but it doesn’t mean we feel it any less. The challenge, more often than not, is finding people who appreciate that love that we must give.

A couple years ago, someone asked me if autistic people feel rejection the same way neurotypicals do. I was sort of taken aback by it. But again, people think that if you don’t respond in ways that someone expects, that someone will think you don’t feel it. Neurotypicals have a term actually. We call them the “strong silent types.” People are strong and silent. They handle rejection with a stiff upper lip. But when it comes to autisitc people, emotions are pathologized. Rejection hurts no matter who you are. Even if someone doesn’t react in the way you expect, it doesn’t mean it feels any different than the weight of that rejection.

How can we make healthcare more accessible to individuals who don’t identify on the cis-hetero binary?

Amy: I think that’s a challenge even for neurotypical individuals who may be nonbinary or transgender. It already is challenging for those folks to get adequate healthcare. When you add autism on top of that, it makes it even harder. Now we are talking about the idea of intersectionality, which shows how all of the pieces of someone’s identity come together and influence how they perceive and are perceived by the world. Something that I have advocated for is better healthcare for autistic women especially because there are so many issues revolving around that. We need physicians to be better trained on the intersections of what someone needs biologically and what someone needs psychologically. Progress in the medical field is very slow. It has to be pushed. How people identify sexuality is a huge factor in the care that you can provide someone. We have to train physicians better is what it comes down to. Lack of knowledge is a killer.

How do you hope to see this field evolve in the future?

Amy: I actually just designed a sex-ed curriculum for individuals on the spectrum. There have been more curricula around sex education in autism forming but to have one that is autistic-led and guided is a bit different and makes it stand out more. We’ve been able to incorporate autistic communication into this curriculum which is very important in helping individuals reach their goals pertaining to sexuality. What has been taught usually is what is expected of neurotypicals by neurotypicals and that doesn’t work for individuals with autism.

I don’t know if you’ve ever heard of the show, Love on the Spectrum, but I had seen the Australia one. They had this coach who was giving one young man all these neurotypical dating tips. We saw him out on a date, and he was trying to follow what the woman had said but you could see that he was very uncomfortable and just not at ease. Why this woman was giving neurotypical dating tips to autistic couples never made sense to me. As soon as the young man began to act more like himself, he was much more relaxed, and it was easier to watch.

We don’t want to shove people into a box that they don’t fit in. We want to make the box work for them.

Gabi: I really like that and I think that idea is very important when it comes to providing support for people with autism. It’s the same idea for intervention strategies, education, employment, etc. These things need to be personalized and I think that is something I hope to see in the future.

Amy: I would love that too. What I saw in that show just doesn’t work.

Can you share some of the most impactful feedback you’ve received from individuals or families you’ve worked with?

Amy: I got some feedback pretty recently. Someone had contacted me asking if I could write a chapter for a book they are editing. They said to me, “The way you framed goals and objectives for individuals and families is both eloquent and pragmatic. Your teaching style is truly impressive, and I’ve learned so much about the female experience through you and your work.” I was just blown away. I didn’t even know I had a teaching style. That meant so much to me. I really enjoy presenting my work to people on the spectrum. They are my favorite audience probably because they are so real. They are honest and some of them remind me of me. I just want to protect them because I know how tough the world can be.