INTERVIEW AND BOOK GIVEAWAY!
Marguerite Elisofon, Author of My Picture Perfect Family, has graciously agreed to an interview, and will be giving away autographed copies of her book to some of our lucky readers. Just comment below to enter to win.
! I am excited about her book release today, in perfect timing for Autism Awareness Month. Remember awareness is about telling our stories, and sharing our struggles and triumphs! I hope you enjoy the interview, please feel free to ask her any questions you like in the comments section. Now….on to the interview!
What misinformation is out there about the abilities and potential of children on the spectrum?
The worst myth out there is that kids on the spectrum don’t want relationships or can’t make emphatic connections with others. While some kids may be uncomfortable with touch and making eye contact, others – like my daughter –can present as very warm and affectionate. Even as a young child, Samantha loved to give hugs. Sadly, I also think some of the autism labels almost rise to the level of misinformation. Some diagnoses-especially Pervasive Developmental Disorder (PDD) and PDD- Not Otherwise Specified (PDD-NOS)- are confusing and misleading, as well as not particularly helpful in terms of treatment modalities even if a child fits the criteria.
Your story is an inspiring one as Samantha did go to college and graduate with honors, what programs are available to help students with ASDs transition to a higher education setting?
Due to increasing demand, more and more colleges are beginning to accommodate students with disabilities and include supports for students on the autistic spectrum. Pace University here in NYC-where my daughter graduated- offers a comprehensive academic support program (OASIS) for students with high-functioning autism or Asperger’s Syndrome. Adelphi University also has an autism support program, which includes Stephen Shore, a professor and autism advocate. New Frontiers, here in NYC, provides tutoring and transitional help for ASD kids graduating from high school and going college, as well as residential and academic supports for those in college. In addition, they are currently launching a program to help college grads transition into jobs and independence. For students with greater academic challenges who may want a college experience without a degree, there are College Internship Program (CIP) and College Learning Experience (CLE) programs in different parts of the country.
Samantha was featured in a short film titled, Keep the Change, which shows how people living on the Autistic Spectrum navigate romance. What did you do to help Samantha with social situations and potentially romance?
Helping Samantha navigate all kinds of relationships has been a life-long project. As my daughter likes to say, she is still “a work in progress.” Most of her childhood was spent childhood working on basic social skills and teaching her how to behave in public places (like restaurants and movies) so that one day she could enjoy these places independently with her peers.
When Samantha approached puberty at age 12, we hired a tutor to help her learn her about her anatomy and sex education because none of her schools had attempted to teach these subjects. Before she left for Landmark College-where there were four times as many men as women-I knew she would be confronted with young men wanting to have sex with her. I told her to experiment, but take relationships slowly. I suggested choosing one boyfriend and rejecting anyone who wasn’t willing to go at her pace. I did my best to explain terms like “tease,” “slut” and “reputation.” I also made sure my daughter understood the necessity of using a condom; I gave her a package and demonstrated their use on a vibrator. Nowadays, so many young people seem to get the majority of their sex education from adult websites such as https://www.youngsexer.com/ and therefore I wanted to make sure that Samantha received a more well-rounded education and was made aware of steps that she could take to protect herself. The threat of STDs is very real and it was important that I made her aware of it. I considered perhaps teaching her of the STD outbreaks that have occured in the past to demonstrate the severity of them; for example, the AIDs outbreak in the 1980s, or even as far back when syphilis was rife amongst Nazi soldiers, as detailed on this article. Never in a thousand years did I imagine I would be offering my own daughter a hands-on lesson. But Samantha didn’t giggle. Her face was as serious and attentive as when I taught her to put on socks.
Autistic Spectrum Disorder is diagnosed more frequently in boys (1 out of 42) than in girls for whom statistics range all over the board: are girls still being under-diagnosed and underserved?
Yes to both questions, due to continuing gender bias. The problem is that girls are being measured according to the criteria used for boys. Also, until recently, the assumption has been that girls on the spectrum tend to be affected more severely and have greater impairments. In actuality, it turns out that girls in many cases may be on the higher end of the spectrum, exhibiting greater interest in social connection and more subtle symptoms.
When in your journey did you decide to write a book? Your book is a memoir and it is full of incredible details from what people were wearing, what they ate, what the weather was like that day. Could you describe your writing process? Did you journal all of those years?
As my kids grew up, I was writing the book in my head. I’ve always had a really good visual memory. Of course, we were also creating a photographic narrative that serves as a great reminder for details like clothes and weather. I finally got time to write the book when my twins left for college. According to my mom, I have a memory like an elephant –for better and for worse!
How did you keep your relationship with your husband and your marriage together despite so many obstacles and the need to focus on your daughter?
Time alone together was very important. We always went out Saturday nights alone or with friends, and occasionally stepped out on Wednesdays. Since our family is small and without relatives nearby, we had to rely more on babysitters that we could comfortably afford. Often we took babysitters with us when we were together as a family, so that if Samantha was in meltdown mode, the babysitter could take her home without forcing the rest of the family (or me!) to leave a restaurant or movie.
Enforcing the ABA strategy is much easier if you can say: “Your choices are to stop screaming and stay with the family or go home with the babysitter.” My husband and I learned that when the four of us went out alone, we tried to soothe or placate her, thus reinforcing her negative behavior (because we didn’t want to leave the restaurant or movie).
Also important in keeping the marital relationship afloat was respecting our different-but-equal struggles. He shouldered the heavy financial burden entirely, while I managed the emotional burden 24/7. That wasn’t always easy, but since we both put out kids first, we were both willing to make the necessary sacrifices.
One of the things besides Samantha’s perfect-picture smile that makes her stand out is her gift for singing. How did learning to sing and perform help Samantha?
Singing and performing helped Samantha gain confidence. Finally, there was something she could do better than her twin brother, and better than many people! Instead of working hard at a challenge, singing was easy and fun. As Samantha auditioned and performed, she met peers who shared her talents and interests, in addition to her autism. She met her first best friend while auditioning for a play, and then working backstage together when neither of them got chosen for an on stage role.
Acting, in both theater and film, has been tremendous in helping Samantha grow as a young adult. Thanks to acting, she has also learned to see and feel life from her character’s perspectives. In addition, she learned to work in a group who comes together to create something larger than themselves. Today she participates in a community of like-minded friends at the DreamStreet Theater Group.
About the Author:
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, which was featured on Fox 5 News. Her essays have been published in literary magazines such as: Existere: Journal of Arts and Literature, Write for Light, Hobo Pancakes, Wild Violet and Kaleidoscope. 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.
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