Twin with Autism Seeks Someone to Love

By Marguerite Elisofon March 29, 2016

I strived for years to help my daughter form meaningful relationships—from her own twin brother to future romantic partners.

When Samantha was 8, she threw a coin into a fountain. “I want to get married someday,” she wished. Risking her wrath, I asked why. “Why” questions are difficult for many young children on the autism spectrum. But my daughter replied without hesitation: “Because I want someone to love.” I was surprised and moved. Not only was Samantha answering a high level “why” question, but she was also expressing the active (and generous) wish to love, rather than be loved.

If ever there was a mother motivated to make her daughter’s wish come true, I was that mother. But how would Samantha learn to build an intimate relationship, I worried, when she couldn’t even get along with her neurotypical twin brother?

The difference between my twins had been so pronounced at such a young age that it precipitated my early detection of Samantha’s issues. At 11 months, Matt used more than 100 words. Samantha had only 10. Matt appropriately pointed at objects, while nothing held Samantha’s attention; too often she stared into space, unrelated.

As toddlers in the bathtub, when Matt playfully splashed Samantha hoping to engage her in a game, she stared blankly or burst into tears. At preschool and day camp, Matt found himself in the position of being his sister’s protector. Yet, too often Matt felt unappreciated, embarrassed, and rejected by his sister. And, despite my efforts to pay them both equal attention, I couldn’t help spending more energy on Samantha, soothing, explaining, and overseeing her many therapies.

When the three of us were together, I was necessarily preoccupied with preventing Samantha’s meltdowns. So many triggers set her off. Simple elevator rides in our apartment building were hell. If Samantha’s “favorite” elevator arrived, she jumped up and down, squealing repeatedly, “This is my favorite!” If the “hated” car came instead, she howled gibberish, staring at the ceiling light as if hypnotized. Trapped in the elevator beside us, Matt’s eyes stayed on his sneakers until he could sprint into the lobby.

No matter how much I sometimes wanted to vanish into a hole in the sand, I was determined to teach my daughter enough social skills to form friendships. There was always another mother of a child with autism willing to persevere through an afternoon activity together of bowling, swimming, arts and crafts, or a movie (that our children didn’t understand). My daughter continued structured “playdates” long after her brother was “hanging out” at friends’ houses.

School offered Samantha many opportunities to develop social skills. The girls in her class talked about American Idol, but Samantha couldn’t join these conversations because she refused to watch TV. The reason? She was too dedicated to homework! I suggested to Samantha’s teacher that she assign shows as homework. While TV with Samantha wasn’t much fun at first, she eventually learned to “read” the judges’ faces on American Idol and entered cafeteria debates over which singers should get booted off.

Samantha’s own talent for singing was discovered at age 7: She had perfect pitch. But it wasn’t until 10 that she matured enough for lessons. Perhaps her first true friend was Phil, a singing teacher who specialized in talented children with disabilities. Phil brought out the best in Samantha, who loved to perform for his praise.

Taking Samantha to the theater and other family outings wasn’t always easy or pleasant, but we persevered. We never stopped teaching her manners, no matter how many meltdowns our family endured. Gradually, Samantha grew into a poised teenager who interacted with a wide range of people, from family friends to bistro waiters.

Samantha met her first BFF while auditioning for Anne Frank. High functioning and slightly older than my daughter, he accompanied her on independent subway rides and citywide exploration. To this day, they share a love of theater and meet weekly.

As for romance, Samantha’s wish never wavered, but she faced a major obstacle. If anyone tried to hold her hand, she reacted as if offered a cactus. She enjoyed initiating hugs and kisses, and draping her arms around others. But holding hands made her feel “treated like a baby.” Convincing Samantha that hand-holding was friendly, romantic, and even grown-up, I invoked therapeutic techniques. From Applied Behavioral Analysis came: “Your choices are to accept holding hands as a gesture of affection or lose a potential boyfriend.” I added role-play. “Let’s pretend you’re the boyfriend. How would you feel if I said ‘Get your grubby paw off me,’ and pushed you away?”

This year, 98 friends wished my daughter happy birthday on Facebook. Matt currently lives in California, but the bond between my twins is palpable. Although they don’t speak often, Matt and Samantha are proud of each other’s accomplishments, share birthdays, and attend each other’s events. Best of all, Samantha enjoys a close relationship with her boyfriend, who has Asperger’s syndrome, and they are often holding hands.

Main image: The Elisofon family when Matt and Samantha were little.
Courtesy Marguerite Elisofon

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