Over the course of the past year, 20-year-old Alexis Wineman has proven she's far more than just another pretty face. Representing Montana as the youngest of 53 women who vied for the 2013 Miss America title in Las Vegas, Wineman has been tenacious in using her public platform to increase awareness of autism spectrum disorder (ASD), which includes a range of complex disorders of brain development characterized by social impairments, communication difficulties, and repetitive patterns of behavior.
At the age of 11, Wineman was diagnosed with Asperger's syndrome and pervasive developmental disorder–not otherwise specified (PDD-NOS), two of the three classifications that were once used in diagnosing ASD, the third being autistic disorder. (See box, “Autism Spectrum Disorder: The Basics.”)
As the first contestant with autism in the Miss America pageant's 93-year history, Wineman has educated others about ASD by traveling across the country speaking at ASD awareness events.
Autism Spectrum Disorder: The Basics Cited Here...
What is autism spectrum disorder?
Autism spectrum disorder (ASD) includes a range of complex disorders of brain development characterized by social impairments, communication difficulties, rigid and repetitive patterns of behavior. In May 2013, the American Psychiatric Association released the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, used to diagnose mental and behavioral conditions such as ASD. This fifth and current edition includes Asperger's syndrome and pervasive developmental disorder–not otherwise specified (PDD–NOS) under the single category of ASD. (For more Neurology Now coverage of these classifications, go to bit.ly/1dN378F.)
What causes autism spectrum disorder?
Neurologists' understanding of ASD has come a long way in the past 50 years, according to Isabelle Rapin, M.D., professor emerita of neurology and pediatrics at the Albert Einstein College of Medicine in Bronx, NY, and Fellow of the American Academy of Neurology (AAN) who has been studying developmental disorders and their classification for more than 50 years. Shortly after World War II, many researchers wrongly attributed the cause of ASD to bad parenting, she notes. “We know now that ASDs are disorders of the developing brain and that genetics play a role in their cause,” Dr. Rapin says.
How common is autism spectrum disorder?
According to statistics from the Centers for Disease Control and Prevention (CDC), ASDs affect 1 in every 68 American children.
What are the symptoms of autism spectrum disorder?
People with ASD have difficulties with social interaction, display problems with verbal and nonverbal communication, and exhibit repetitive behaviors or narrow, obsessive interests. These behaviors can range in impact from mild to disabling.
How is autism spectrum disorder diagnosed?
According to Judy Willis, M.D., M.Ed., neurologist and member of the AAN, most pediatricians will screen for ASD at regular visits starting during infancy through school age, and even beyond if there are concerns about social acceptance, learning, or behavior.
“Some very good screening tools are available, such as the Modified Checklist for Autism in Toddlers (CHAT). It is a form filled out by both parents and healthcare workers that examines whether a child is demonstrating age-appropriate skills,” Dr. Willis says. “In addition, if parents feel that their child does not have appropriate verbal or social skills, they should talk to their child's primary healthcare provider, who may conduct a developmental screening and refer the family to a specialist for further evaluation.”
How is autism spectrum disorder treated?
Treatment options include educational and behavioral interventions, medications, and other therapies. Most professionals agree that the earlier the intervention, the better. “We have seen how early behavior therapy can help normalize brain patterns responsible for the symptoms of ASD,” says Dr. Rapin. Some medications may be needed, according to Dr. Rapin, but they address the symptoms—they do not cure the underlying developmental brain disorder.
What research is being done into autism spectrum disorder?
The patient advocacy organization Autism Speaks estimates that more than $1 billion has been spent over the past decade to research ASD. As part of the Children's Health Act of 2000, the National Institute of Neurological Disorders and Stroke (NINDS) and a number of other institutes have formed the NIH Autism Coordinating Committee to expand, intensify, and coordinate NIH's ASD research. Eight dedicated research centers across the country have been established as “Centers of Excellence in Autism Research” to bring together researchers and the resources they need. The Centers are conducting research into the causes, diagnosis, early detection, prevention, and treatment of ASD.
For more Neurology Now articles on ASD, go to bit.ly/1dboTxg.
For more resources and support, contact:
Autism Society: autism-society.org; 1-800-328-8476
Autism Speaks: autismspeaks.org; 1-888-288-4762
Global and Regional Asperger Syndrome Partnership: grasp.org; 1-888-474-7277
Parents of Autistic Children: poac.net; 732-785-1099
PUBLICACIONES EN ESPAÑOL: Autismo: 1.usa.gov/1ecZsf0
SOURCES: NATIONAL LIBRARY OF MEDICINE; NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE; NEUROLOGY NOW
According to statistics from the Centers for Disease Control and Prevention (CDC), ASDs affect 1 in every 68 American children. “There is no question that the increase has to do with diagnostic criteria and education of physicians, psychologists, other healthcare professionals, and the public to better recognize autistic behaviors in both mildly and severely affected persons,” says Isabelle Rapin, M.D., an internationally known expert in the field of ASD, professor emerita of neurology and pediatrics at the Albert Einstein College of Medicine in Bronx, NY, and Fellow of the American Academy of Neurology.
While researchers are still investigating what factors cause ASD, the common belief is that it can arise from a combination of genetic defects and environmental exposure, such as congenital rubella virus, cytomegalovirus, certain antiepileptic drugs, or fetal alcohol syndrome—not vaccines or ethylmercury preservative (thimerosal) in vaccines. (See box, “Autism Spectrum Disorder: The Basics.”) While some parents have expressed concern over a possible link between vaccines and ASD, a study released in March 2013 by the CDC and published in the Journal of Pediatrics found that even when multiple inoculations were given on the same day, children were not at a higher risk of developing ASD.
“Very mild signs of ASD may not be obvious before age 3, which is one of the reasons the AAN and the Child Neurology Society guidelines suggest routine developmental screening for all infants, toddlers, preschoolers, and older kids at all well-baby and well-child visits. These guideline also suggest routine screening of all children to first identify those at risk for any type of atypical development, and then to identify those specifically at risk for ASD,” says Judy Willis, M.D., M.Ed., a neurologist and member of the AAN who specializes in the neuroscience of learning. “Diagnosing autism early helps to improve outcomes for young children,” she says.
Wineman was diagnosed at the age of 11, which is not unusual. The Autism Society notes that girls in particular tend to receive an ASD diagnosis at an older age than boys, even at age 12 or older. Many people with ASD receive other diagnoses when they are younger, such as attention deficit hyperactivity disorder (ADHD) or obsessive compulsive disorder (OCD). However, for people with ASD, it eventually becomes clear that these diagnoses don't account for the social, communication, and behavioral symptoms.
“There is no doubt that developmental disorders are more prevalent in boys, for as yet unknown reasons,” says Dr. Rapin. “In boys, ASD symptoms tend to be more aggressive and destructive than in girls, often making deficits easier to spot in boys.”
Wineman's mom, Kim Butterworth, remembers noticing differences in the way Alexis and her twin sister, Amanda, developed, starting when the two girls were just toddlers. While Amanda was mobile and chatty at an early age, Alexis didn't walk until she was two or talk until the age of three.
“Alexis would have terrible tantrums and struggle in school,” Butterworth recalls. “She also had a speech impediment. She couldn't pronounce L or TH and had trouble with S, A, and R. The speech impediment made her even more socially isolated.”
Wineman admits it was hard to talk with her peers without feeling uncomfortable. She was often teased and bullied by other children during her elementary school years.
“I was called retarded by my classmates and told I was worthless,” Wineman says. “I found it easier to just keep to myself.”
FINALLY, A DIAGNOSIS
Butterworth confided her concerns about Wineman's speech and socialization issues to her daughter's pediatrician, who said it was probably a stage Wineman would soon outgrow. Yet when her daughter entered fifth grade, Butterworth watched helplessly as Wineman became increasingly frustrated in school and began having frequent meltdowns that would often last hours.
Her pediatrician eventually referred Wineman to a psychotherapist who diagnosed her with depression and put her on an antidepressant. But the medication seemed to make her mood swings worse.
Finally, after getting referred first to a pediatric psychologist and then a pediatric neurologist, the family began to get some answers. “It was an 18-month process,” Butterworth says. “But in the end, we were all relieved to get a diagnosis and to be able to move forward.”
As Wineman's case illustrates, diagnosing an ASD isn't always easy. One of the reasons is that it can be difficult to distinguish between ASD and ADHD in young children. The two conditions share core symptoms.
“There is much disagreement among experts about borderline cases of ASD, precisely because it is defined by behavior and lacks a test that provides a definitive answer,” says Dr. Rapin. “No one disagrees with or doubts the diagnosis if behavioral measures are very far from average, but there is a wide gray area at the edges of both normality and ASD,” Dr. Rapin notes.
ADJUSTMENT FOR THE WHOLE FAMILY
Living in the rural town of Cut Bank, MT, also proved challenging for Wineman and her family when it came to locating resources for people with ASD.
“I remember going with Alexis to her individualized education program (IEP) meeting at school and sharing some of the strategies I had read about on the Internet,” Butterworth says. “Some of her teachers had no previous experience working with children who have ASD.” An IEP is an educational plan that looks at the student's unique needs and how teachers, parents, and staff can work together to ensure a child's academic goals are met for the school year.
While relieved to have a diagnosis, Wineman still faced a long road with speech therapy, learning strategies to cope better with managing her school work, and mastering social skills. She also had to come to terms with her diagnosis.
“My first thought was ‘There goes my future,'” Wineman recalls. “And then I realized that while ASD made me different, it isn't a disease. I decided I wasn't going to let my diagnosis define me or ruin my life.”
Wineman is correct: autism is not a disease, Dr. Rapin acknowledges. A disease is an illness with an identified cause, while a syndrome is a set of symptoms. However, in the case of ASD, those symptoms can be disabling for some people.
“ASD has a very broad range of severity, from extremely mild to debilitating,” Dr. Rapin says. “Social impairment is a common feature of ASD, and speech therapy goes beyond the communicative use of language to help children develop social skills. Many people with ASD need to learn how to avoid repetition, when to stop talking, and how to respond when others ask questions.”
When a child is diagnosed with ASD, it affects the entire family, according to Dr. Rapin. In Wineman's case, her family worked to supplement her speech therapy by helping her to hone her social skills and learn how to make emotional connections. Her two older siblings, Nick and Danielle, would sit down with her in the evening to talk about school and help with homework. Butterworth, noting that her daughter struggled from a lack of organizational skills, helped set up a system where Wineman could organize and remember her homework assignments.
“As a family, we had to learn how to adjust,” Butterworth says. “When Alexis went to her room, we had to realize it didn't mean that she was depressed or antisocial, but rather that she just needed some time alone to decompress.”
Wineman also found comfort listening to music on her iPod, a practice she says reduces anxiety for her.
“Identifying triggers that cause anxiety in individuals with ASD and avoiding them is an important coping mechanism,” Dr. Rapin says. “In younger children, this can mean removing kids from a scene where they are overstimulated.”
HITTING HER STRIDE
As Wineman learned to become more comfortable socially, her family encouraged her to engage in some of her school's social activities. She tried out for the school's cheerleading squad and cross-country team, earning a spot on both. Through her extracurricular activities, she also made some good friends.
“I learned to feel comfortable in my own skin and to step out of my comfort zone,” Wineman says. “Although I was bullied throughout elementary and middle school, by high school most of the kids had backed off, and I decided the ones who hadn't backed off weren't worth my time.”
Wineman finished high school with good grades and as she looked toward college, she asked her mom about scholarship opportunities. “My mom mentioned the Miss Montana pageant, but I don't think she believed I would actually enter!” Wineman says. “But at that point, I had accomplished a lot of other things I never thought I would be able to do, such as speaking in front of a group of people and being accepted to college. I thought it was worth a try.”
Wineman learned that each contestant in the pageant had to have a platform or an issue they wanted to focus on. She decided to make hers about awareness and acceptance of ASD and came up with the title, “Normal Is Just a Dryer Setting: Living with Autism.”
Although she didn't win the Miss America title, she did reach the top 15 in the pageant. She also won the America's Choice Award for receiving the most online votes from viewers. Since the pageant, Wineman has been traveling the country to raise awareness of ASD and was a part of Autism in America, a documentary narrated by actress Chandra Wilson of Grey's Anatomy.
“I want people to accept others who are different, rather than making them outcasts,” Wineman says. “This isn't just about people who have autism, but about everyone who has ever felt they didn't belong.”© 2014 American Academy of Neurology
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