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Alexis Wineman: ‘America’s Choice’

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Alexis Wineman seems like most of us, except she’s prettier. But that would be expected because, after all, she did win the Miss Montana contest at age 17.

Ironically, she doesn’t see herself as “a girlie girl,” and she never was much of one for beauty contests.

“You wouldn’t have recognized me three to four years before that,” she muses. “I wore over sized clothing, often with hoodies or a hat so people wouldn’t notice me.”

Beauty and make-up just weren’t her things. Actually, she confides, she and her older brother Nick always ducked out into the basement of their home to watch something on TV other than the Miss America competition when it came on annually, because her mother and sisters Danielle and Amanda looked forward to seeing it “because they really were into all that. It was Danielle who was really into make-up, which I never wore until I graduated from middle school. She made me up for that day, and I actually wore something other than my usual ‘uniform.’ When I walked down the aisle, no one recognized me! It was really crazy. They really didn’t know who I was!”

So how did she become a beauty contestant, given her penchant for hiding in over sized clothes even she considered “weird” sometimes?

Her mother suggested the contest would be a way she could get a scholarship for college, and she really wanted to follow her other siblings and go to college.

So her sisters loaned her a swimsuit and dolled her up with make-up. She took a comedy routine from her 10th grade speech class as her “talent” and, to her huge surprise, she won. She really had no idea what a “Miss Montana” was supposed to do after that, until she was informed that one of her first “duties” was to represent Montana in the Miss America competition.

There, she was told she had to have a platform and, also, she’d have to come up with about a minute speech on “Why you should vote for me,” which would be broadcast to people all over America and, well, the world too, so they could vote for their favorite competitor.

She made a crucial decision. She decided to make her platform about awareness and acceptance of autism—a spectrum disorder for which she had been diagnosed just seven years earlier.

Her speech title is insightful: “Normal Is Just a Dryer Setting. Living with Autism.” As they say in show business, it has a great “backstory.”

Her “coming out” as a young woman with autism and telling the world of 10 million viewers something about who she was apparently was so moving she won the hearts of the public, who voted on line, netting her the title of the “America’s Choice Award.” It was also unique—given she was the first contestant ever with autism in the Miss America’s 92-year old history as well as the fact that she was the youngest contestant at age 18 that year.

Overnight, she was transformed into a celebrity and spokesperson for autism. She was featured on ABC News, Fox and Friends, NBC World News, Glamour magazine, and Neurology Now.

She says she really only wants to tell her story to help people understand about autism and to advocate for people with autism so parents, siblings and others know how important they are to their child’s survival.

She has a great model in her mother, Kim Butterworth, and a sibling story to tell that is riveting.

Alexis has a twin, Amanda, who really looks less like Alexis than her older sister Danielle. Because Danielle is older—as is her brother Nick, the first-born child—Alexis considered Danielle almost like a second mother and her older brother as her idol.

Because she had a twin, who spoke and walked early, Alexis’ mother had a reference point to note that Alexis didn’t walk until she was two and talk until age three. Even at a very early age, Alexis felt “different” from her twin.

Alexis also had a speech impediment, which made her feel self-conscious outside the family, which her parents immediately began working with her to correct in her pre-school period.

When she entered school, other children made fun of the way she spoke and bullied her. Even though her twin was in another classroom, she still could see her during the day, which helped her through the days of early elementary school because they were so close. However—unlike her sister, who Alexis says even at an early age was “competitive, brilliant” and almost the ideal student—Alexis would have major meltdowns, throwing tantrums in school—perhaps because of social isolation and academic difficulties—something typical of a child on the spectrum if they can’t articulate what things are frustrating them or because of sensory issues.

When her twin was promoted into another grade in another building a year ahead of Alexis, Alexis became convinced by her peers that she was retarded. She found it easier to keep to herself, basically trying to be as inconspicuous as possible. “I felt stupid, because she was a genius, and I was not, and I didn’t have any friends, so the bullying was really horrible, but Amanda experienced it too because she was the youngest in her class.”

By fifth grade, Alexis was in a downward spiral in school, so she and her mother visited their pastor about Alexis’ problems. He told them she probably needed a specialist to evaluate what might be causing her extreme distress. Alexis’ mother took on the challenge of finding a doctor who could tell them what was going on.

Because they lived in a small town in Montana (less than 3,000 population at that time, which isn’t incongruent with a state that has a total population less than Seattle, WA), appointments with any specialist anywhere in the state are difficult to obtain, but her mother was not-to-be-denied, according to Alexis.

“She’s the strongest woman I know,” remembers Alexis. “She never gave up.”

“We went to (the first) specialist, one so boring he never looked at me and looked at his clipbook the whole time. If I would have been swapped out (with some other person), he wouldn’t have known it. I watched the clock the whole time, so it took seven minutes and 58 seconds for him to declare I was ‘depressed,’ so he prescribed Zoloft to a nine-year-old going on ten.

“The pills made me black out. I almost killed myself two times. I’m not saying I’m against antidepressants or they’re a bad thing, because they may work for someone other than a prepubescent teen. I’m saying I had no idea what was going on and neither did anyone else.

“The best thing that happened to me at that time was when I got the flu. My mom took me to our family doctor—who asked routinely if I was taking any medications, which he did routinely before prescribing anything for the flu. When she told him I was on Zoloft, the doctor became furious, demanding I be taken off of Zoloft immediately.

“That’s the first time we heard the word ‘autism,’ which the doctor suggested could be the problem, so my mother made an appointment with one doctor after another until, finally, a pediatric neurologist—the only one in Montana at that time—confirmed what our family doctor thought.

“I wouldn’t be talking to you today if it weren’t for our family doctor and the flu and my mother. She’s one of my heroes. I like to tell parents they shouldn’t blame themselves for what no one tells them and what they can’t easily find out for themselves. Think of the doctors I saw (at least four or five), who didn’t come to that same diagnosis.”

Finally diagnosed at the age of 11 with PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified), an autism spectrum disorder, Alexis’ first thought was she was “a freak and weird.”

But, as life often does, it began a slow assent, with the help of her family, now with a greater understanding of what provoked her meltdowns. Among other things, her older sister Danielle helped her routinely with homework and organization after school—areas in which she had been having problems.

Alexis—still not interested in make-up and hair, because she now wore hats  or hoodies—had about 45 minutes in the morning while her siblings were dressing. She elevated her earlier stimming activities into walking in larger circles around the inside of the house, opening the doors to all the rooms, Her family now understood her circle turning was a calming tool she used to deal with stress.

“I could completely shut down and not have to think,” she explains about her walking routine. “I still do it today to take control and deal with stress.” She pauses and laughs. “You know, we’re selling that house now I loved so much. It’s a beautiful, wonderful home, but someone who wants to buy it—if they look closely—will see a weird divot in the floor, which I carved by walking the same path every day for almost an hour every morning and afternoon all those years.”

Her brother and sisters also began gently pushing or pulling her into social relationships with others in school. Her brother Nick was a senior who ran cross country when Alexis was in the seventh grade, so he told her that “this is going to be the last year they’d have together” before he went off to college, suggesting she run cross country with him so they could spend some time together his last year. “Hanging out with my brother was the BEST thing, “she remembers, “but he tricked me on this one.”

She went out for cross country to run with him, but in Cut Back, Montana, cross country doesn’t have a track or a standard course that big cities might have. There, the students—all grades of cross country runners, from seventh grade to seniors—would be hauled out “to nowhere,” says Alexis, “and we’d have to get back!

“The first day, I had run, maybe, a mile and a half, and I was dying— literally coughing and sick—because I had never run before. I really was all by myself in the middle of nowhere. No one was there! And, then, I heard some bag pipe music playing. I thought I had died and was hearing music on my way to heaven, but, then, all-of-a-sudden, up comes Coach Reynolds in a beat old van, smoking and playing this horrible bag pipe music, which was literally blaring out of his van. He leaned out and yelled at me, “There’s only one way to get the music to stop, and it’s to run faster!

“It was like the hazing in cross country,” she continued on. “I learned that you’re not competing against other people; you’re competing against yourself, and that’s sort of my concept I’ve lived by since then. I’m really not a competitor.”

In her ninth grade, she was encouraged by Danielle to take a speech and drama course. Remember, Alexis still had a speech impediment, although she’d been working with professionals for years towards improvement. When Alexis complained she couldn’t speak in front of others, Danielle simply put her hand on her shoulder and told her, “It’s okay, because you can be a mime.”

So, Alexis signed on and became a mime, where she didn’t have to talk “and I was really a good mime, so I made it to state in a speech and theater competition.” There, she was shocked when another mime came up to her and talked to her, because she had become so used to the silence in the acts, she thought all the mimes were like her. She had an Eureka moment that changed her definition and expectations of others, including herself, so she, also, began talking to others when not acting as a mime.

Also, she was encouraged to be a cheerleader her freshman year, which she says she “truly hated, because the girls would spend a lot of time talking about others.” Her mom became the coach and told her, “You stay in it until the end of the year, no matter what.”

Her lesson in tenacity had more attributes than the achievement of surviving the year. She also learned the reciprocity in appreciation. She continued on for three more years and was elected captain her senior year. She now looks back on it and says, “All my siblings got me out of my comfort zone. They tricked me and pulled me, which forced me into social relationships, and I began to survive.”

Her “biggest, best day ever,” however, was in her junior year, when her twin sister Amanda was the first rated finalist in the state’s speech and drama competition. Since the third grade, when Amanda was promoted and they were separated by schools, the two of them basically had taken separate paths, Amanda achieving great success academically and Alexis struggling, among other things. Alexis knew Amanda was speaking in the competition, but she had no idea what Amanda’s speech was about. She decided to attend the competition without telling her sister because it would be her last chance to hear Amanda’s presentation.

Alexis showed up in her “hat filled with button pins, an obnoxious pink capri and rainbow socks” and sat down to hear the presentations. When Amanda saw her, Alexis said Amanda made this face, which she subsequently came to understand was an expression of “Oh, no. I’m screwed.” Alexis was in for the surprise of her life.

Amanda’s talk was about autism, a subject she told the audience she wanted to address because she had a sister with autism, which she felt most people didn’t understand. In the middle of her description about her life with her sister and her struggles, Alexis began crying because it was so moving.

Amanda did too.

Alexis looks back on these moments as life-changing. “To hear I was okay to Amanda was the best thing ever. I just didn’t think that or know that until then,” Alexis remembers. “That made me the happiest I had ever been.” Alexis realized she was who she was, and she could be loved and appreciated for that. “I realized it’s good we’re different, even if we’re similar in that we drive each other up the wall.” Because Amanda basically fell apart in the competition, she dropped from first place to fourth.  “Of course, that’s something she’ll never let me live down,” laughs Alexis.

Today, Amanda has finished college and is on her way in law school. Alexis’ older sister, Danielle, is the reigning Miss Montana (also having attained a scholarship) and is doing her year’s service visiting schools and other events. Alexis is quick to point out that “she’s really a great Miss Montana because she’s really good at it and knows what to do. She hasn’t had a day off,” Alexis proudly claims. When Alexis wanted to go see her sister compete in the Miss America competition, Alexis deliberately chopped off her long tresses because she and her older sister look so much alike, and she didn’t want anyone to mistake her sister for her or take anything away from Danielle in her time in the contest she has always loved.

Her family has moved to South Carolina, where they all get together as frequently as possible. “My family is everything to me,” claims Alexis. “We’re very close, very close.”

Alexis is in college in her junior year, just recently having changed her major from communications to art. She also is speaking at conferences and events around the country—realizing her dream to advocate for those on the autism spectrum and to promote understanding.

She, like Temple Grandin, says that having autism doesn’t mean you’re less. It definitely translates into “different,” but, from the title of Alexis’ Miss America’s platform, it very well may be a whole lot more! Remember the title? “Normal is just a dryer setting.” Alexis looks back over her 22 years and reflects on the hard times to let people know what life can be like growing up with autism, but she understands also that her family gave her the greatest gifts anyone can have—the understanding and appreciation of who she is as a unique, talented, and—well—beautiful (inside) individual.

At age 22, Alexis is realizing her dream of telling her story to create understanding of autism. She may not have the name recognition of Temple Grandin, but, once she starts speaking with her mixture of hard knock experience, misdiagnosis, late diagnosis, humor, and heart, the crowds throng about her—wanting her advice, asking more questions, thanking her profusely for her insights, and wanting her to sign something.

She’s working on a book, so she may have something to sign soon.


Lyn Dunsavage Young is a journalist and was the founder/publisher of the Dallas Downtown News, a newspaper that won numerous Katie Awards, one for the most outstanding weekly in Texas; recipient of the WICI Award for the Most Outstanding Journalist in Texas (of three) and recipient of the Sigma Delta Chi/Press Club’s Outstanding Journalism Career Award; and co-author or primary editor of six books. She works for Future Horizons as their media coordinator and Director of Advertising Sales for the Autism Asperger’s Digest. Her email is lyn@fhautism.com.

 


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