22-Year-Old Nonverbal Woman with Autism on Finding Her Voice and Advocating for Others
"My voice is loud and powerful. I can share knowledge and compassion with families who have started to go through struggles with their child on the spectrum," she tells PEOPLE
Carly Fleischmann understands the power of communication because she went much of her life without it.
Diagnosed with autism and oral-motor apraxia, which makes her unable to speak, at age 2, Fleischmann had a breakthrough at 10 years old when she communicated for the first time by typing on a keyboard. Today, the 22-year-old uses technology as her voice for everyday thoughts and feelings. Fleischmann has become the first-ever nonverbal celebrity talk show host, as well as an inspiring advocate for other people with autism.
“My voice is loud and powerful,” Fleischmann tells PEOPLE via email. “I can share knowledge and compassion with families who have started to go through struggles with their child on the spectrum.”
Fleischmann’s inspiring story will air during the Saturday, Nov. 18 telecast of Night of Too Many Stars, a celebrity-packed fundraiser hosted by Jon Stewart for autism programs in partnership with NEXT for Autism. Guests include Robert De Niro, Edie Falco, Will Forte, Kumail Nanjiani, Chris Rock, Andy Samberg, Stephen Colbert, Adam Sandler, Sarah Silverman and John Oliver. (8 p.m. ET on HBO).
The Toronto native says she first understood what it meant to be nonverbal during a lunch with her siblings as a young girl.
“My brother placed his order and then my sister did hers. I remember putting my order in too, however, when the food came out my sister and brother got what they wanted and the plate in front of me was not what I had asked for in my head,” says Fleischmann. “At that moment in time, I realized I did not have a voice. I could not tell people that I wasn’t feeling well or why I was hitting my head with my hand to stop myself from doing something I knew was wrong.”
But at age 10, Fleischmann finally found her voice. Starting with one-word sentences, she began to request things she wanted — something she could never do before. Eventually, Fleischmann was sharing her feelings, dreams and hopes for the future with her family — and revealing her hilarious personality.
But Fleischmann says learning to type sentences was a difficult and slow process due to her poor fine-motor skills.
“I had to work hard to communicate and spell. When I first started to type, I could only talk with one-word sentences,” she says.
As soon as she could begin communicating, Fleischmann wanted to tell her mother that she loves her. And she decided to enlist the help of The Ellen DeGeneres Show to say it.
“Every time I tried to explain to my mother that I loved her, she kept on cutting me off or tried to guess what I was going to type on my computer. One day while we were in L.A., I asked a friend of mine, Ellen DeGeneres, to tell my mom that I loved her,” says Fleischmann.
“It took Ellen DeGeneres being my voice in order to get out three simple words that many people can say in less than 30 seconds.”
Inspired by Ellen and Oprah, Fleischmann made headlines again when she interviewed Channing Tatum in April 2016 for the first episode of her own talk show: Speechless with Carly Fleischmann. As host of the first-ever nonverbal talk show, Fleischmann has a knack for ideating witty questions and making celebrities feel comfortable enough to open up.
Fleischmann knows the importance of feeling comfortable within your surroundings, as something as seemingly simple as sitting in a coffee shop is overwhelming for her. The whistling sounds and smells can create an overstimulating experience, which she captures in her moving video, “Carly’s Café: Experience Autism Through Carly’s Eyes.”
But Fleischmann says “something in [her] head clicks” when she’s onstage or on camera. She finds herself able to control her body.
“It’s funny, being in front of a camera or an audience is what makes me feel the most comfortable and relaxed,” says Fleischmann. “It’s hard to be on all the time, meaning it’s hard to control my body or control the elements that are trying to come into my head all at once.”
Many people with autism often control their movements in overwhelming situations by “stimming,” or self-stimulatory behavior that involves a repetition of movements or sounds. Fleischmann uses platforms like her website and social media to educate people on stimming and so much more. She wants the world to understand that people with autism syndrome are more than just a label.
“I think the biggest misconception is that if you meet one person with autism you’ve met them all, when in fact, when you meet one person with autism, you’ve met one person with autism,” says Fleischmann.
“We are more than just the label, and if we are going by labels, I have OCD, scoliosis, selective mutism and Oral Motor Apraxia,” she says.
“And worst of all, Good Looking Syndrome!” she jokes.
And at just 22, Fleischmann is proud to have accomplished so many things the world never thought she could achieve.
In addition to learning to communicate, she graduated from high school, reached over 3 million viewers by interviewing celebrities like Tatum, Whitney Cummings and James Van Der Beek. And she wrote a song for country artist Kaitlin Kozell.
But, most importantly, Fleischmann has inspired thousands by sharing her knowledge about what it’s like to live with autism. She answers parents’ questions on her website and social media on a regular basis, and she is constantly finding new and innovative ways to share her experiences with the world.
Looking to the future, she one day hopes to host her own show on TV, turn her new pilot script into a sitcom and even create a reality show that shows the world what someone with autism goes through on a daily basis.
“If I could give parents [who have a child with autism] one piece of advice, it would be that your child is in there. They need you to help them reach their potential, and they can achieve more than you think they can,” says Fleischmann. “Your mission is to help your child become the best they can be… just like every other parent. Whatever stage your child is at, you’re there to help your child find their voice and learn how to use their voice, in order to better their lives.”