'I Rarely Share That I'm on the Spectrum': What It's Like Being in Your 20s With Autism

At 11 months, it was clear that Samantha Elisofon was developing far differently than her twin brother, Matthew. Matthew chattered, pointed at objects, and asked his parents questions. Samantha rocked and stared into space, not responding to her name. At 18 months, Samantha was diagnosed with autism -- and her parents were told that she didn't have much chance of leading a normal life.

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Samantha was born in 1990, when autism wasn't well-known, treatment options were sparse, and the Internet as we know it didn't exist. But her mother, Marguerite Elisofon, was still determined to do everything she could to help her daughter.

Over the years, this included therapy; doctor visits; fights for educational funding and understanding from teachers; struggles with medication; and plenty of parental love, patience, and perseverance.

samantha and marguerite elisofon

Now 25, Samantha has far exceeded those initial chances the doctor gave her. She's graduated cum laude from Pace University, volunteers with young children on the spectrum, and recently appeared in a short film, Keep the Change, about two autistic adults looking for love.

Here, Samantha shares with The Stir what it's like to be an adult living with autism.

How would you explain your autism to someone who's never heard of the condition before?
Autism makes it very hard for me to pick up and understand social cues. But I'm very affectionate, and I love initiating a mix and match of hugs and kisses, also draping my arm around my friends, family, and boyfriend.

How does your autism make you unique?
I think my motivation and perseverance are a big part of what makes me unique. I'm also a very optimistic person.

What do you feel is the biggest misconception about autism? What would you like people to better understand?
[The biggest misconception is] that we aren't capable of connecting with the outside world. I'd like the world to understand and acknowledge that we are really motivated and we can succeed in relationships and in our work -- if people will just give us a fair chance.

More from The Stir: 10 Moms Share What They Want You to Know About Autism

What's the biggest personal challenge you face because of your autism?
Social skills. I seriously struggle with communicating effectively. I have a tendency to get myself all worked up and become defensive too easily. Often I repeat myself excessively, get stuck, or end up making a mountain out of a molehill.

Can you give an example?
When my mom tries to help me or teach me something, I sometimes snap and become very defensive. I feel embarrassed when I struggle to handle things independently. Sometimes I really worry that she's infantilizing me.

samantha elisofon

What's your biggest professional challenge?
Social skill challenges make it really difficult for me to find full-time work. I need a lot of support with resumes, cover letters, and how to conduct myself appropriately on interviews.

How do you feel your autism helps you succeed?
It's gradually taught me to advocate and speak up when I don't understand what's going on.

Can you think of a recent time that's happened?
Last summer, when I was at a fund-raiser for my movie, Keep the Change, someone asked me a question that I had no clue how to answer. I was asked how it felt to be an actress with autism working with a neurotypical director.

Just for a moment, I felt really upset and embarrassed, but then I pulled myself together and said, "I really don't understand the question. Could you please rephrase it differently?"

My mom told me that she and her friends thought the question didn't really make sense. Mom was very proud of me for responding appropriately and staying calm, even in front of an audience.

Then Rachel Israel, the director, asked me how I felt about working with her. That question was a lot easier and made more sense. I said I loved working with Rachel because she really believed in me as a performer, and she's an amazing director.

More from The Stir: 10 Amazing People With Autism Who've Accomplished Amazing Things

So much emphasis is placed on helping autistic children. Do you feel autistic adults are sometimes overlooked?
Children with autism are given so much support and attention, but as soon as we graduate from school, it seems like no one cares about helping us make the transition and adjustments to our adult lives. I feel very disappointed about that.

What are your hopes for the future, career-wise?
My greatest hope for the future professionally is that I'll have a variety of wonderful performance opportunities in Broadway or off-Broadway musicals, movies, and TV shows.

I'd love to play Christine in Phantom of the Opera or Fantine in Les Misérables. I also really love Grease and The Producers. When I was little, I loved Annie and Beauty and the Beast.

I love singing and acting because it gives me so much excitement, joy, and pride. Performing and shining onstage allows me the opportunity to show the world my talents.

What goals do you have in your personal life?
I also love working with young special needs children and sharing my passion for musical theater. Someday, I hope to marry the right man at the right time and maybe raise a family of my own.

How did you meet your current boyfriend?
I met him two summers ago. We met through my parents' friends at a family gathering. We love to go to movies and just hang out together and be romantic. My boyfriend has a mix and match of Asperger's syndrome and bipolar.

Do you typically share with people that you have autism?
I rarely share with friends or employers that I'm on the spectrum. I don't even have a full-time job! My bosses at my part-time position [at a music school] know that I have a disability because my mom walked in off the street and found me this job. She told the owners that we lived in the neighborhood and that I was a college grad on the spectrum who loved music and children.

All of my close friends have similar social and learning disabilities. We never discuss having autism. Why should we?

 

To read more about Samantha, check out My Picture Perfect Family: What Happens When One Twin Has Autism, the newly released memoir by her mother, Marguerite Elisofon.


Images courtesy of Marguerite Elisofon

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