MY PICTURE PERFECT FAMILY paints an engaging and at times heart-wrenching picture of the courage it takes to raise and advocate for a child who is far more than the sum of her ever-shifting diagnosis. Elisofon details the therapies, treatments, school searches and day-to-day victories of a little girl who so desperately wanted to fit into a world that didn’t understand her. She shares the considerable challenges met by the entire family including Samantha’s twin brother, Matthew. And she reveals the eventual triumphs as Samantha grows into a young woman who discovers a hidden gift for singing and pursues a college degree.
A: I advise families to go beyond the recommendations offered by college guidance counselors. Start with those options, but don’t feel limited or discouraged by what you learn. If possible, visit the recommended schools in addition to those you research for yourself; bring your son or daughter and ask a lot of questions.
Do you think your child will feel comfortable in that school environment? What are the other students like? Can you envision your child making friends here? In addition to academic help and accommodations, what social and life skills supports are offered? What efforts—if any—are made to integrate students with autism into the neurotypical college community?
Is it a commuter school where your child will be alone on weekends when most students go home? Does the college offer ASD students a real four year degree—or just an expensive (and potentially indefinite) “experience”? How many students with autism have successfully graduated, and how many years does it usually take them? How warm and welcoming are the administrators and support staff? How many hours of tutoring and/or counseling are offered? Will the school help your child navigate course selection and majors? Remember to ask as many questions as you can. Then ask if you can call back and ask more! If you don’t like the answers or attitude, keep looking till you do!
Q: What did you do to prepare your daughter for independent living while she attended college?
A: First and foremost when preparing for college, Samantha and I discussed dating and sex. None of her special education schools had provided any sex education, so I considered these topics essential. Since 80% of students with disabilities are currently male, I knew Samantha would experience an onslaught of suitors and a few sexual predators. After years of being lonely and craving relationships like the ones enjoyed by her twin brother, I knew that saying “no” would be difficult for her.
Samantha needed to understand that saying “yes” would not help her gain love and respect—quite the opposite. I had to teach her the meaning of words like “slut” and “reputation,” along with STDs and condoms. She needed to understand her right to choose a boyfriend patient enough to get to know her and take things slowly.
We also had many discussions about taking and refilling medications. When Samantha attended Landmark College, I found a nearby pharmacy that was willing to charge and deliver her prescriptions to the school infirmary. I also signed my daughter up for a laundry service because I wanted her to concentrate on academics and not worry about keeping her clothes clean.
Q: Do you have suggestions for other parents and educators of younger (perhaps elementary-age) children to prepare them for college and/or independent living when they are older?
A: I strongly suggest that parents and educators provide sex education to kids with autism in middle school or early adolescence. It’s hard enough to teach neurotypical kids the subtleties and nuances involved in sexual encounters. But kids with autism really MUST learn the basics to keep themselves and other students safe. So many young women on the spectrum have been victims of sexual assault that we MUST find ways to empower them to understand this complex topic. Teaching kids on the spectrum proper hygiene and grooming is also essential. Without these good habits, how can they live independently when they grow up? Last but not least, basic etiquette and manners should be taught to children on the spectrum as a gateway skill into the neurotypical world.
Q: In the book, you mention that Samantha worked on the film “Keep the Change,” a romantic comedy about two young adults on the spectrum. Can you tell us more about the film and Samantha’s role?
A: Keep the Change is an award-winning short film about a young man on the spectrum who wants a romantic connection, but is in denial about his own symptoms. When he meets Sarah, (played by Samantha) he must confront his social challenges (as well as hers) while trying to navigate the neurotypical world. Originally film director Rachel Israel was cautioned by her Columbia professors not to cast both star actors with disabilities. Since her lead actor had Asperger’s and Tourette’s Syndrome, she auditioned 100 neurotypical actresses for the female lead, but wasn’t satisfied. Rachel “discovered” Samantha at a JCC program for adults with disabilities and cast her in the short film, and then again in the feature-length version due out next year. What’s unique about the film and Samantha’s role is that she and the rest of the cast collaborated with the director on developing her character and dialogue.
Q: On your blog (http://margueriteelisofon.com/samantha), Samantha gives some advice to parents of children on the spectrum. Can you tell us a little about her advice for parents, and perhaps educators, on how they can support people with autism?
A: Samantha’s advice to parents is mainly to be patient and supportive. Break down complicated concepts and instructions into what she calls “small manageable bites.” For educators, Samantha and I would both advise teachers to connect abstract ideas with concrete experiences in their student’s lives. Also, it’s not enough to get an “A” on math test, if you don’t understand sales and discounts when you walk into a store or know how to add up a check and figure out tips in a restaurant. It’s a good idea to actually take ASD students into a store or restaurant and make sure they understand how to apply what they’ve learned in the classroom to life.
Marguerite Elisofon is a New York City writer and the author of My Picture Perfect Family, a memoir about how her family navigated life with a child on the autistic spectrum before the internet and support groups existed. She also blogs about parenting young adults and disability related issues in The Never Empty Nest. Her writing has been featured in a variety of publications, including Time and NY Metro Parents magazine, and her family’s story has been featured by the NY Post, Fox News, Parents Magazine, and on Jenny McCarthy’s Dirty Sexy Funny radio show. A Vassar graduate, Marguerite was born and raised in New York City, where she still lives with her husband, Howard, in their mostly-empty nest. She is available to speak about a wide variety of issues relating to twins, parenting, and autism.
Samantha Elisofon is the subject and inspiration behind MY PICTURE PERFECT FAMILY: What Happens When One Twin has Autism her Mother, Marguerite Elisofon’s, new book. Born with developmental disabilities, Samantha was eventually able to graduate from Pace University, cum laude. She is a gifted singer and actress and starred in the award-winning short film Keep the Change, which will be released in 2017. http://margueriteelisofon.com/samantha