By Penny McLaren 2014-02-27 19:07:08
When I was seven years old, I ate in the cafeteria alone, because nobody else wanted to sit with me. When I tried to sit with them, they would leave. It’s safe to say nobody in that cafeteria was able to see the value in me.”—Daniel Wendler Daniel Wendler didn’t know then why it was so difficult for him to fit in with other kids during lunch, at school and at summer camp. It wasn’t until he got to high school that he was diagnosed with Asperger syndrome, a condition that is considered today to be an autism spectrum disorder (ASD). Receiving this diagnosis made a huge difference in Wendler’s life. When he finally understood that he had a neurological condition that made it difficult for him to interact with others naturally, Wendler decided to make a study of something that comes so naturally to so many: average social skills. Now an adult, and considerably more adept and successful in social situations, he has written an online guide and website (improveyoursocialskills.com) to help others with similar struggles. Wendler was named by the organization Autism Speaks as one of its “10 Amazing Individuals With Autism Who Shined in 2013,” based on a TEDx talk he gave at the University of Arizona last summer (visit http://bit.ly/tedxdan to view the talk). Wendler has gone public with his story of growing up with a type of autism, because he feels his experiences might be able to help others. In addition, he hopes he can encourage adults in positions of helping a child to feel a sense of belonging to make every effort to do so. “The people who did see value in me were the reason I was able to get where I am today,” he credits. Could you find a way to make sure that each child you encounter feels valued? Understanding different autism spectrum disorders can provide important cues for occasions when you observe a student in your cafeteria who seems to exhibit such symptoms, giving you the tools to be proactive and help that child feel less isolated. At the very least, raising your awareness about autism will help you to approach these students with understanding, tolerance and compassion. AUTISM DEFINED Symptoms of autism usually appear by age three and affect physical, social and behavioral skills. Autism Speaks, an advocacy organization dedicated to funding research that would find causes and a cure, offers the following definition of autism: “Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development, characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.” In other words, children with ASD not only encounter difficulties in making friends, but find it hard just to be around other people. They may struggle to hold conversations or understand how to relate to others, because of an inability to read emotions. They may not be able to express what they think at all—or to do so in a socially appropriate manner. In some cases, they may not speak at all and demonstrate other language disabilities. These children may repeat simple actions over and over, like stacking and arranging things. They also might be quite gifted, especially in areas like art or math. The Centers for Disease Control and Prevention (CDC) sums it up thusly: “People with ASDs handle information in their brain differently than other people.” A SPECTRUM, LIKE A RAINBOW Autism is a term that has been in use for 100 years. The word is derived from the Greek “autos ,” meaning “self,” and describes conditions in which an individual is removed from social interaction, so the term came to mean “an isolated self.” After decades of research, autism was determined a distinct disorder and not simply children seeking escape from reality. Unfortunately, this and other inaccurate early theories persist in false stereotypes that are still perpetuated today by laypeople who don’t understand ASD. In the 1940s, Hans Asperger wrote about children he had studied who were highly intelligent but exhibited social challenges; he called these children autistic. By 1980, the term Asperger syndrome was applied to these symptoms. The first known use of “autism spectrum disorder” was as recent as 1992. It describes “symptoms, skills and levels of impairment, or disability, that children with ASD can have,” says the National Institute of Mental Health (NIMH). Autism Speaks elaborates on characteristics of people living with ASD: “Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual, music and academic skills. About 40% have average to above-average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and ‘atypical’ ways of viewing the world.” But the site goes on to note that “others with autism have significant disability[ies] and are unable to live independently. About 25% of individuals with ASD are nonverbal, learning to communicate using other means.” THE AUTISM DIAGNOSIS Autism was once thought to be very rare. But the National Autism Association says the rate of autism has steadily grown over the last 20 years. Recent CDC data estimate that 1 in 110 children in the United States is diagnosed with ASD. Another estimate pegged it as high as 1 in 88. CDC statistics find autism is more common among boys than girls. In this country, an estimated 1 out of 54 boys and 1 in 252 girls are diagnosed with ASD. Asserted by a number of reputable sources to be the fastest-growing developmental disorder, why has ASD become so prevalent? There are no clear answers as to the cause of autism or its rise in recent years. One theory about the rates of diagnosis is that the breadth of symptoms simply are more understood today. To this point, John W. Jackson, PhD, of the Association for Science in Autism Treatment, recently asked, “Are there really more kids with autism today than in generations past? Or do other factors give this impression? Are we just better at diagnosing children with autism? Are professionals more willing to make this diagnosis? Are more children reported simply because more services are available?” Jackson concludes that autism may have been underestimated in the past. Recent changes in the diagnostic manual related to ASD may change the number of children who are diagnosed each year (see this month’s Bonus Web Content page at www.schoolnutrition.org/ snmagazinebonuscontent to learn more ). Instead of autism, children who exhibit social skills problems without any incidence of repetitive or associated behaviors may be classified with Social Communication Disorder (SCD). SIGNS OF AUTISM In the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) , guidelines are outlined for psychiatric professionals through examples of symptoms that could lead to an ASD diagnosis. They include: • an inability to initiate social interaction or understand back-and-forth conversation; • abnormal eye contact or body language; • an inability to understand gestures; • a lack of facial expression; • no interest in peers their own age; • difficulty in sharing play or in expressing imagination; • repetitive movement (such as moving the hands) or using objects repetitively (such as lining up objects); • insistence on routines and demonstrating extreme difficulty with change; • a need to eat the same food every day or follow the same route every day; • intense focus on certain objects; and • extreme sensitivity (or indifference) to sensory cues, such as sounds. NIMH provides further insight that might help you build your awareness: “[It] can be hard for others to understand the body language of children with ASD. Their facial expressions, movements and gestures are often vague or do not match what they are saying. Their tone of voice may not reflect their actual feelings, either. Many older children with ASD speak with an unusual tone of voice [that] may sound sing-song or flat and robot[ic].” In addition, children with ASD may have trouble understanding another’s point of view, notes NIMH. For example, by school age, most children understand that other people have different information, feelings and goals than their own. But children with ASD may lack this understanding, leaving them unable to predict or understand others’ actions. Those at the high-functioning end of the spectrum were once described as having Asperger syndrome; today, in the new DSM , the diagnosis would be “severity level 3.” Individuals with this diagnosis likely would show no difficulty with speaking (in fact, their language can be extremely well-developed, showing a grasp of complex concepts and words even at an early age), as well as intense interests. It is in the social interactions—the eye contact and other areas of engagement— where they might struggle. CAFETERIA CHALLENGES You are experts on dealing with children’s food preferences! But for a child with ASD such problems may become exaggerated; some estimates suggest that more than half have food-related problems, ranging from food allergies to gastrointestinal issues. In addition, they may be extremely sensitive to the flavor, color, smell and texture of foods. Many also have strong preferences for a very narrow selection of foods. Without awareness of these issues, a server or lunchroom monitor might assume the child is being unnecessarily fussy or picky—leading to distress and possible conflict for everyone involved. Children with ASD may need to work with their occupational, speech therapist or feeding specialist to try out cafeteria foods in advance. A “back-up lunch” from home may be necessary. Trying new foods always should be encouraged, but never become a power struggle. Other sensory issues in the cafeteria may pose problems for students with ASD, including loud volumes, bright lights, the unstructured setting, the need to be social, etc. These all can be extremely stressful. Accommodation suggestions might include allowing the child to come to the cafeteria a bit early; finding a less chaotic spot in the cafeteria to dine; and establishing “friendship groups” during lunch where they are with a smaller, identifiable group in a quieter place. Autism Speaks recently published Exploring Feeding Behavior in Autism: A Guide for Parents, with guidelines and tips. The organization also launched an online column called “Food for Thought” and offers an online School Community Tool Kit to provide education and support for staff. CREATING A SENSE OF BELONGING Now that you’ve gained a basic understanding of ASD from this brief overview, can you apply your newfound knowledge to enhance the experiences of children who struggle with this condition at your school? Daniel Wendler offers some advice to those working in school cafeteria programs: “First, interact.” Even if they’re small, daily interactions can make a huge difference—something many school nutrition professionals know well! Look out for those students who seem down, dejected, unhappy and alone— especially on a regular basis. “A little encouragement is a big boost for a kid who is otherwise excluded,” Wendler notes. Also, because cafeteria staff see children every day, your observations can be valuable insight when shared with teachers or a school counselor, he adds. Next, take more of a macro view. Wendler recounts how at his middle school cafeteria, with 30 to 40 kids per class, all the boys sat together at one end of one long table, while he sat by himself at the other end. The girls sat at another table, and they would accept him and let him sit with them, but he only did so occasionally, because, as he remarks, what middle school boy wants to sit with the girls ? Wendler remembers that he would talk about things that nobody else wanted to talk about, but he didn’t catch on to their cues. Eventually, one boy befriended him and came to sit at his end of the table, and then things began to change for the better. While the cafeteria team doesn’t have the budget to change seating formats after the fact, it’s something to consider if your school is soon due for an renovation or if you’re involved in new facility construction. It’s impossible at the secondary school level to establish and enforce any type of a seating plan that would eliminate such isolation, but you might be able to work with lunchroom monitors, teachers and even students involved in class government, peer mentoring clubs and similar organizations to take action when a child is observed sitting alone day after day after day. Also, advises Wendler, be on the alert for bullying and other poor treatment. “There should be some deliberate awareness of what is going on,” he says. “At least [a cafeteria employee] can be a first responder in reporting an issue that needs to be addressed.” Another way that school nutrition professionals can help to engage a student with an ASD is to offer unique opportunities for extra responsibility. In Wendler’s case, a teacher asked him to run the sound board for a public address system and a youth pastor recruited him to help plan events, which then required him to interact with fellow students. “Someone saw potential in me,” he recounts. Maybe you can involve such a student in assisting with periodic cafeteria projects, like updating displays and information boards or helping to decorate for special promotions. A student who wants to engage but doesn’t know how may be more willing than those caught up in the social whirlwind to help you take on more advanced and time-consuming projects, like a school garden or greenhouse, a promotional video, web page designs and so on. They also might make good recruits for a student advisory group. One of the biggest misconceptions about people with an autistic disorder is that they have no empathy or that they don’t care about others. “That is untrue,” says Wendler. “They actually care very much. They just don’t pick up on signals. They don’t have the skills to read others or express their own feelings. And they get overwhelmed easily with the stimulus of the world. So, they might appear callous, when in reality, they’re simply not aware that another person is sad or upset.” Never underestimate the power of a small act of inclusion. Wendler recounts an occasion when he stood on the sidelines watching a basketball game, wanting to play. Fortunately, someone made a point to invite him to join in. “I remember how good that felt,” he says. “They made a place for me.” Do you know someone like Daniel Wendler? Have you seen a child repeatedly eating alone in the cafeteria, at best ignored and at worst bullied for being different? With information from this article helping to alleviate some of the stigma and clarify misperceptions about ASDs, you can set aside any initial reservations you may have consciously or unconsciously carried and reach out. “It does not take very much to make a big impact on someone who feels they are on the outside or feel they don’t belong,” says Wendler. Meaningful words from someone who initially struggled for the skills to express himself. Penny McLaren is a freelance writer in Vancouver, Wash., and a former editor of this magazine. Contact her at firstname.lastname@example.org. Readers are also welcome to contact Daniel Wendler by using the e-mail links at his sites: improveyoursocialskills.com and danielwendler.com. Photography by yalayama, SimmiSimons, RapidEye and Tramper2/istockphoto. SNAPSHOT • Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. • There are no clear answers as to the cause of autism or its rise in recent years. • Children with ASD may face special challenges in the cafeteria, including foods, sensory overload and social isolation. BONUS WEB CONTENT Daniel Wendler isn’t the only individual with autism who earns a deserved spotlight. Check out more of the “Amazing Individuals With Autism Who Shined in 2013” to hear their inspiring stories. You’ll find a brief description and links on our Bonus Web Content page for March. Visit the same site, www.schoolnutrition.org/snmagazinebonuscontent, for resources to learn more about Autism Spectrum Disorder, as well as details about new changes in diagnosing autism.
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