Watching Michelle van Boerum and Tom Sandfordt as they stroll hand in hand, heads bent together in eager conversation, even a casual onlooker would peg them as a loving couple. In fact, van Boerum, 28, and Sandfordt, 46, have been together for more than three years, but they radiate such intense pleasure in each other’s company, you could easily imagine they’d just met. She’s dark haired and petite; he’s a head taller, with graying hair and a smile that crinkles the corners of his eyes. They finish each other’s sentences, and when asked what they like about each other, they reply in tandem, without hesitation.
“He’s very, very supportive,” she says.
“I’m supportive of her; she’s supportive of me,” he says.
“When I’m feeling down, he knows how to reach me,” she adds. “And I know how to calm him down. I tell him, ‘Take a deep breath and don’t let anything get to you.’”
They met at a Special Olympics event where they both were competing. The attraction was mutual and instantaneous. Today, they live down the street from each other, in a supervised apartment program provided by Bancroft, a Cherry Hill-based nonprofit that offers an array of programs in New Jersey, Pennsylvania and Delaware for children and adults with special needs. He has autism, and she’s been diagnosed with intellectual and developmental disabilities. What’s most striking about the couple isn’t what they’re lacking, but what they have: an enviable romantic relationship that’s based on mutual trust, shared interests, and a fair amount of je ne sais quoi.
As the attention on autism is expanding from the requirements and challenges of childhood to the needs, many of them still unmet, of adults, one need has been left largely undiscussed. “A misconception about individuals with autism is that they’re not interested in being sexual with others,” says Suzanne Buchanan, executive director of the nonprofit advocacy organization Autism New Jersey. “In fact, they may be highly motivated, or average, or less motivated, just like those in the general population.”
Motivation, of course, is only part of the equation. People with autism face unique challenges when it comes to expressing their sexuality, and though there’s little data on the subject, established couples like van Boerum and Sandfordt appear to be in the minority.
Misconceptions about the sexuality of people with autism (also known as autism spectrum disorder, or ASD) abound, even among some of the people closest to them, and can hinder the development of healthy sexual outlets. There’s a common assumption, for instance, that if people with autism have a sexual side at all, they’re certain to be heterosexual. In fact, says Peter Gerhardt, executive director of the EPIC School for students with autism in Paramus, “the diversity of sexual interest and sexual expression is as broad in the autism community as it is in the typical world.” Another misconception is that individuals with autism are interested solely in relationships with others on the spectrum. In fact, some are open to dating so-called neurotypicals, and some actually prefer to date them exclusively. Amy Gravino, a resident of Montclair, has autism spectrum disorder; she’s also a certified autism specialist, consultant and speaker. Although the 35-year-old has dated men with ASD, she’d prefer not to.
“I definitely tend to go for non-spectrum guys,” she says, citing several negative experiences she’s had with men on the spectrum (she was stalked, she says, for several years) and noting that some autistic men lack a grasp of sexual and romantic boundaries.
In fact, social interactions in general are often challenging for individuals with autism; couple that with a tendency among parents and educators to avoid raising the topic of sex with children and young adults on the spectrum, and you start to see the difficulties that sex and sexuality can present for those with ASD.
Roadblocks to Romance
The word autism was coined in the early 20th century out of a deep misunderstanding of the condition, which persists even today. From the Greek autos (meaning “self”), it implied that those with autism were locked in a prison of the self, unable to communicate with or understand, the people around them.
In fact, says Kerry Magro—a blogger, mentor and author of a self-published book, Autism and Falling in Love: To the One That Got Away—“the people I work with are probably the most empathetic people I’ve ever met.” Magro has a form of autism called Pervasive Development Disorder Not Otherwise Specified.
What some people may perceive as an empathy deficit actually derives from the neurological hard wiring that can make it difficult for people with ASD to read emotions, make small talk or maintain eye contact—all traits that are essential when it comes to connecting with new people. Those challenges can lead individuals on the spectrum to overcompensate—forcing themselves to stare at a stranger rather than give in to the desire to avert their gaze, for instance, or to engage in inappropriate conversation or avoid social situations entirely. Magro, who lives in Hoboken, started dating at 18, but felt hobbled by a feeling of awkwardness around the opposite sex. “I had no idea how to talk to women,” he says.
Magro may share that problem with plenty of neurotypical young men, but he faced other challenges unique to autism, like difficulty interpreting body language or recognizing irony. “I had trouble understanding when someone was serious versus when they were joking,” he explains.
“Intimate relationships tend to be very complex social enterprises,” notes Gerhardt. “Even something that we consider very basic—being able to know that another person is interested in conversation, say—can be daunting to folks on the spectrum.”
Adults and young adults with autism can also fail to comprehend the subtleties that govern social and sexual relationships. Gravino remembers her first kiss, which she initiated on a dare at a skating rink when she was 17. Unfortunately, the boy she kissed was 14—probably her emotional equal at the time—and that kiss got her into trouble with his mother. “I had the biggest crush on him,” she says, “and I remember calling his home and not understanding why his mother was so angry that a 17-year-old girl was calling her 14-year-old son.”
In Love and In Peril
Social awkwardness can imperil a romance, or even a chance at romance. But for those on the spectrum, it can threaten safety itself. Women with autism, says Gravino, “are often made to feel that we can’t have standards; we can’t be picky. If someone’s paying attention to us, we feel like we’ve got to hold on to that for all it’s worth.” That feeling led her to stay with a college boyfriend who was verbally abusive. In the end, she was forced to get a protection-from-abuse order—similar to a restraining order—against him. The entire relationship and its aftermath left her shaken. “I felt very vulnerable, really wanting to feel validated, to feel attractive,” she says. “It led me to make some bad choices”—including another relationship with a man who was verbally abusive.
Without an innate ability to assess another person’s intentions, people on the spectrum can find themselves the target of sexual predation. And, says Gerhardt, the very lessons individuals with autism are taught to help them navigate the world more easily—particularly to follow the instructions of parents, teachers and other authority figures—can lead them to comply with anyone they perceive as having authority. “In general,” says Buchanan, “people with autism are much more socially naïve, and are therefore vulnerable targets.” Conversely, the lack of an understanding of personal and sexual boundaries can manifest itself in inappropriate—and sometimes illegal—sexual behavior.
A danger of a different kind is an unwanted pregnancy. Depending on where they are on the spectrum, individuals with autism may not be able to cope with the physical and emotional demands of pregnancy itself, let alone those of raising a child. As a result, decisions regarding contraception, for at least a portion of the ASD population, will likely fall to guardians. (A guardian, legally defined, is a parent or legal caretaker of a child under 18, or the court-appointed caretaker—often a parent—of an adult deemed incapable of handling all the responsibilities of adulthood.)
The type of birth control chosen will ultimately depend on the capabilities of the person in question. “Some methods of birth control are just going to be too complicated,” notes Clair Rohrer, senior vice president in charge of adult community services at Bancroft. A diaphragm, for instance, requires a fair amount of dexterity to insert and remove, and the pill needs to be taken daily—a requirement that may be beyond the abilities of some on the spectrum. Birth control patches and injections (delivered by a caretaker) and IUDs are generally better options. Another, more controversial, option is sterilization—by vasectomy or tubal ligation. With its overtones of eugenics, sterilization is rarely a first-line choice and requires court approval.
A Need to Know
In 2014, the American Academy of Pediatrics declared that discussion of birth control options and sexuality should be part of routine pediatric care for young people with disabilities. In fact, given their vulnerability, sex ed may be even more of an imperative for young people on the spectrum than for their peers in the general population. It seems likely, though, that many aren’t receiving appropriate sex ed—or any at all. New Jersey mandates that students in first through twelfth grade receive at least 150 minutes of health education each week, some of which must include sex ed. But autistic students may not grasp lessons tailored to the neurotypical population, and those who spend most of their school day in special-education classes (as at least one third of New Jersey’s students on the spectrum do) may be receiving far less sex ed than the amount mandated.
Jean, a New Jersey parent who runs a nonprofit program for young adults with autism and whose autistic son, now 29, was mainstreamed (educated in a public school setting, in both regular and special-education classes), isn’t sure what he learned about sex in school or what he actually took away from the lessons he received. That situation is not uncommon for parents of children with ASD, many of whom have problems communicating. Jean (who preferred not to be identified by her full name) believes that children with autism need to get formal sex ed but, she also notes that “people with autism need formal social-skills training as well, and that just never gets done in school.”
When her son was diagnosed with ASD at age four, Jean and her husband worried that he’d never get the chance to be in a loving relationship—an anxiety shared by many parents of children on the spectrum. North Arlington resident Nakeishia Knox Holston, whose 21-year-old son has autism marked by fairly significant communication problems, would love to see him in a lasting relationship. She and her husband realize they won’t be around forever to provide love and support. But, she asks, “can he even understand what that’s like? Can he express those feelings?”
For parents like Holston, that desire for their children to experience romantic love is often stymied by their own reticence to talk about sex. “I often hear from parents and professionals about their fear, concern, bewilderment, and uncertainty over recognizing and supporting their child or client’s sexuality,” says Gravino. “Many parents flat-out refuse to see their young adult child with autism as a sexual being, and many others are left struggling with a lack of strategies for talking to their child about sexuality.” And sometimes, other issues like problems at school or work, disruptive sleep patterns and sensory overload can make sex education seem like a secondary concern.
Unfortunately, putting off the conversation can be perilous. “What’s cute at five,” says Gravino, “isn’t so cute at 15 and can get you thrown in jail at 25.” She notes that there’s a much higher preponderance of sexual assault (seven times higher, according to a report aired in 2017 on National Public Radio) among autistic adults, especially women, than in the neurotypical population.
Searching for Solutions
Autism experts advise that, whether or not a child on the spectrum is receiving sex education at school, there are lessons that need to be taught at home. First and foremost, says Autism New Jersey’s Buchanan, “parents should identify safe and appropriate ways for their adult children to have a healthy sexual outlet.” For young adults who may have difficulty finding a partner, this, she notes, should include teaching them about masturbation, and in particular, where it’s appropriate and where it isn’t, but also how to do it, if necessary. Clearly, this isn’t the easiest conversation to have with a child, adult or otherwise. Buchanan suggests bringing in an expert—a medical professional, a therapist, or a licensed counselor—if need be. (Autism New Jersey provides a referral list of local clinicians, psychologists, social workers and counselors on its website.)
Any lesson about sex, notes Gravino, should include the topic of personal boundaries. “Children should know that their body belongs to them,” she says, “and that can be used as a springboard to teach them about the boundaries of others.” In addition to basic information about sex, it’s essential that children on the spectrum learn about consent—how to give it and how to ask for it. Gravino warns that shame should never be part of the instruction: “Shame isn’t something that typically comes naturally to individuals with autism, and introducing it in the context of sex can cause more harm than good.”
While every child, neurotypical or on the spectrum, needs to have “the talk,” children and young adults with autism will probably need another talk as well, this one about how to socialize. Again, professional autism counselors and mentors can step in when parents are unsure where or how to begin. Magro has mentored many young people on the spectrum, using role-playing techniques to teach specific skills like starting a conversation (acknowledge something about the person, then follow it with a question about what they have been doing lately, like reading a book or engaging in an activity) and making eye contact (if it’s too hard, focus just above the eyes at the forehead—most people will think you’re looking directly at them).
One of the greatest obstacles to romance on the spectrum is a real or perceived lack of opportunity for social interaction. Given their difficulty in social situations, many people with autism shy away from mingling grounds like clubs, bars and parties. Men with ASD looking to meet women on the spectrum face additional challenges, since there are so many more men with autism than women (in New Jersey, 1 in 28 males has been diagnosed with the condition, as opposed to 1 in 133 females). The rise of online dating has provided new opportunities, especially for high-functioning people on the spectrum, and there are now sites devoted specifically to those with Asperger’s syndrome, like aspie-singles.com and spectrumsingles.com.
In New Jersey, in fact, there are opportunities across the state for adults and teens on the spectrum to make connections. The nonprofit Our House New Jersey, for instance, offers Club OH!, an inclusive monthly dance with a deejay, snacks and games, held at the Connection in Summit. “Everybody can attend,” says Michele DelCorsano, the organization’s president and CEO. “It’s open to the community and it’s wheelchair accessible.” Bancroft’s Clair Rohrer recommends that people with ASD, or their parents or caretakers, look into the variety of social events sponsored by individual county departments of recreation and local Jewish Community Centers, designed specifically for people with special needs.
And then, of course, there’s the Special Olympics, which brought Van Boerum and Sandfordt together. The couple is proof that, in spite of the challenges and potential missteps, people on the spectrum can find long-lasting love. And they clearly want you to know it. “She calls me ‘babe,’” Sandfordt offers, beaming at his partner, “and I call her….” He hesitates, but Van Boerum has his back. “‘Hon,’” she says.
Leslie Garisto Pfaff is a frequent contributor on health and other topics.Click here to leave a comment