Social Skills for Social Media

While social media offers opportunities for parents of special needs children to share information and support, this modern convenience also can allow people to be hurt by intentionally or unintentionally unkind comments. When parents of children with autism make rude remarks, I wonder if they, like their children, may be on the autism spectrum themselves and have difficulty with social skills. Others may be sleep-deprived from taking care of children who stay awake all night, and others are likely understandably upset by the stress of their circumstances. Nonetheless, in order to help each other, we need to remember the power of words and strive to be kind and helpful in what we say to others.

Over the years, I have participated in various online support groups for parents of children with autism. A great deal of what I have learned about autism and parenting children with special needs has come from those wise and caring parents who were willing to share what they have learned from their experiences. Remembering the thoughtfulness of those parents who helped me through the early years of autism, I strive to offer the same support and information I received to other parents of children with autism. However, I’m sometimes surprised when parents of young children with autism deem themselves experts and fail to value advice given by veteran parents. Nonetheless, many of us still share our experiences, hoping to help others.

Last week, a parent shared serious concerns about a child with members of an online support group and asked valid questions while seeking information. Instead of offering sympathy or empathy to a parent in crisis, some seemed more intent on critiquing parenting skills. Perhaps if they couldn’t be nice, they should have been quiet instead. One person kept asking nosy question after nosy question, more like an investigative reporter than a supportive presence. In a sense, this interrogator seemed to be trying to gain all the attention by asking irrelevant questions. At one point, I was waiting for this person to ask the silly question from the movie The Breakfast Club: “Can you describe the ruckus?” After all those questions, this person, who is not a parent, had nothing helpful to offer, which confirmed my suspicion of simply seeking attention.

Another issue that arose in this online conversation was the topic of medications, which is a touchy subject in autism. Certainly, many parents would prefer not to medicate their children. However, for some with autism, medication proves essential to well-being and safety, addressing depression, anxiety, and aggression. Some parents of younger children with autism eschew the use of medication, yet they don’t realize the need until their children get physically bigger and stronger, becoming more difficult to handle when they have meltdowns. Those who tout only using behavioral therapy need to remember that therapy takes time to have positive effects. I know this because Alex has been in behavioral therapy for more than six years with a fantastic therapist; the benefits take time to achieve. Moreover, some parents are on long waiting lists for therapists and cannot get the help they need immediately. Therapy may only be one piece of the puzzle.

Later, some caring parents brought compassion to the discussion. Addressing the parent by name, offering not only good, specific suggestions but also sharing their own experiences and empathy, these parents provided what the parent in crisis was seeking: understanding and guidance. Perhaps these parents reflected upon their own situations and remembered what they wanted to know in similar situations and what had been helpful to them. By being gracious instead of critical, they offered the support that should always be present in a social media support group. Responding to their kindness, the parent in crisis was equally gracious, thanking everyone for the advice and support.

Last week, the Indiana Resource Center for Autism at Indiana University posted one of their terrific social stories on their Facebook page. Written by Kristi A. Jordan, these short stories intended for children with autism provide helpful tips regarding how to interact with others. For Valentine’s Day, the social story suggested, “It is nice to make a card for every person, even if you do not like them. If you do not like someone, remember that is a secret. You should think it, but don’t say it. Keep that thought a secret.” Perhaps, all of us, not just children with autism, should heed that advice. As Alex’s behavioral therapist reminds him in a useful handout: “Before you say something, THINK: Is it true, helpful, informative, necessary, and kind? If not, keep it to yourself.”

Addressing the issue of how to deal with rude people on social media, especially trolls, autism mom Cathy Jameson recently wrote an outstanding essay for Age of Autism. [To read this essay, please click here.] While she specifically mentions the heated debate regarding vaccines, she offers good suggestions for handling any topics of contention. These provided good advice for me at a time I was ready to straighten someone out on social media for making comments I saw as hurtful and unfounded. Instead, I chose discretion and opted not to engage in the debate. As Cathy Jameson advises: “Sometimes it’s best to just walk away and let it go.”

However, she also offers helpful recommendations when engaging in dialogue with others: “When you do say something, I’d suggest doing so without emotion and name calling. When one resorts to name calling, the chance to politely prove a point is immediately lost.” Moreover, she offers a valuable tenet for dealing with others online that also applies in real life: “Encourage people. It’s simple and what we prefer to do.” We may not always agree on every topic, but we can be agreeable in how we treat others.

"Do you have the gift of speaking? Then speak as though God Himself were speaking through you. Do you have the gift of helping others? Do it with all the strength and energy that God supplies. Then everything you do will bring glory to God through Jesus Christ. All glory and power to Him forever and ever! Amen." 1 Peter 4:11

A Matter of Perception

 

Last week, a picture of a dress went viral on the Internet as a lively debate ensued in the social media as to the true colors of the dress: blue and black or white and gold. My seventh grade students enthusiastically defended their choices, and I was a little worried that my decision apparently mirrored that of notorious singers Justin Bieber and Kanye West. Quickly, the media published reports about the scientific basis explaining why people saw the dress differently. Essentially, the eyes and brain work together to determine color; however, light and perception play key roles in making the final decision. [To read an article explaining this phenomenon, please click here.] While I’m certain that dress is really blue with black trim, others are just as convinced that the dress is definitely white with gold trim. It’s a matter of perception, after all.

In mulling over this debate, I’ve been thinking about how autism could also be a matter of perception. While some characterize people with autism as having a lack of empathy, others have suggested that people with autism may be more empathetic than typical people are. Because people with autism may not react emotionally to certain situations, others perceive that they don’t feel the same emotions or maybe even don’t really care. However, some adults with autism who can verbalize their feelings have expressed that they become overwhelmed in certain situations and must shut down, making them appear emotionless or uncaring.

Similarly, people with autism may be thought to be of limited intelligence, especially since 40% of them do not speak. Since most of the testing methods used to assess intelligence focus upon language, evaluating true intelligence proves difficult. For example, two psychologists have assigned Alex an IQ of 70, which qualifies him for disability benefits by placing him in the mentally handicapped category. However, Alex can solve multi-digit math problems in his head more quickly and accurately than I can, and he taught himself to read at age two. Consequently, I don’t place much stock in standardized testing. Perhaps autism is a different intelligence that cannot be measured with traditional tools.

Yesterday, as I watched Alex thoroughly enjoying himself at a college basketball game, surrounded by noise, activity, and sensory stimuli that could easily overwhelm anyone, I often wondered what he was thinking at times. At one point, I watched his eyes gazing around the top of the gymnasium and carefully noting some details. Knowing his love of dates, I thought he might be reading the years of championships emblazoned on the banners hanging from the ceiling. A few minutes later, the mystery was solved when he told me, “Sixty-two.” Of course, I had no idea what he meant by that number, so I asked him what he’d been counting. “Lights, “ he proudly told me. For Alex, the world makes sense in numbers instead of words, and he takes control by taking inventory. Lately, we’ve had to move him along in stores when he suddenly finds objects that catch his eye, and he wants to count them. Like Raymond Babbitt in the movie Rain Man who counted toothpicks, telephone poles, and cards, Alex wants to count bricks in a wall, tiles on a floor, or lights on a ceiling. Most of us simply see the whole picture—a brick wall, a tile floor, a brightly lit room—but Alex notices all the small parts and puts them together because he perceives the world differently.

Besides counting the lights, Alex was also enthusiastic about seeing the team mascot walking around the gym. As the Crusader came closer to where we were sitting on the second row, Alex eagerly put up his hand to give the friendly mascot a “high five.” Unfortunately, by the time the Crusader walked to where we were sitting, a group of little kids came running to mob the mascot, standing in front of Alex and denying him the greeting he wanted. Patiently, he waited his turn for the high five, but the mascot was busy with the kids and never saw Alex. Although Alex was disappointed, he never stopped smiling, but he began to shake. I asked him if he was all right, concerned that he was upset, but he explained that he was excited. Even though he didn’t get his high five, he was happy to see the Crusader up close and content enough with that interaction. Clearly, he felt such great emotion that his body responded by shaking, which was probably caused by an adrenaline rush. He had just as much enthusiasm about meeting the Crusader as the little kids did, but he knew as an adult that he couldn’t push his way into the crowd and had to accept gracefully that he wouldn’t get the high five he wanted. Although Alex often seems to be distracted or even distant, he is actually engaged in the situation but dealing with the activity on his terms, which others may not perceive correctly.

While the blue/white dress debate illustrates differences in perception similar to those seen in attitudes toward autism, the attention focused on such a meaningless issue seems wasteful to me. Of course, theories about the attention this topic received also made the news: perhaps people focus on small things like the color of a dress to divert their attention from overwhelming and upsetting items in the news. [To read an article on this theory, please click here.]  While I wish autism would receive the attention and concern the color of the dress received last week, I suspect that autism has too many mysteries and problems to be as appealing as the less important news items featured last week. As I observe Alex, I realize that he copes with the world in his own way. Instead of talking about the dress colors, he counts lights and waits for mascots and finds joy even when things don’t turn out as he’d hoped. Some may see that as a weakness; I see that as a strength.

“Since ancient times no one has heard, no ear has perceived, no eye has seen any God besides You, who acts on behalf of those who wait for Him.” Isaiah 64:4

Theory of Mind and Literary Fiction

Last month a report that appeared in Science magazine entitled “Reading Literary Fiction Improves Theory of Mind” caught my attention as an autism mom and as an English teacher. [To read the summary of this article, click here.] Some researchers believe that people with autism lack Theory of Mind, or the ability to understand that other people have different thoughts and feelings than they do. Some have simplified this concept to the belief that people with autism lack empathy, or the ability to understand and share others’ emotions. Of course, those who cannot understand other people’s feelings and predict how they may react in situations are likely to have impaired social skills, which are also common in people with autism.

To assess Theory of Mind, researchers use the Sally-Ann test to see if children can understand how other people think. This test uses a story format with two girls, Sally and Ann. Sally has a ball, which she puts in a basket, and then she leaves the room. While she is gone, her tricky friend Ann removes the ball from the basket and places it in a box instead. Children are then asked to guess where Sally will look for the ball when she returns. Those who understand Sally’s thinking will choose the basket, knowing that’s where Sally thinks she left the ball. Those who lack Theory of Mind will choose the box because that’s where they know the ball has been placed. Typically children with autism believe that Sally knows the ball is in the box because they know it’s there; they don’t stop to consider that Sally is unaware that the ball has been moved while she was gone.

Since Alex has never been tested for Theory of Mind as far as I know, I was curious to see how he would do with the Sally-Ann test. When I gave him the test this morning, he immediately gave me the right answer, confidently telling me that Sally would look for her ball in the basket. Was this a lucky guess, or does Alex truly possess Theory of Mind? From recent progress we have seen in Alex, I believe that he has developed some understanding of the way other people think.

As the article in Science magazine points out, little research has been done to determine what helps develop Theory of Mind. With Alex, I think that behavioral therapy has helped him to understand better how his actions impact others. Through social stories and scripts his behavioral therapist has developed, Alex recites the rules for interacting with other people. For example, in his script “I Need to Keep My Hands to Myself,” he reminds himself that he needs to stop when he wants to touch someone or their belongings. The last line of this script explains the outcome when he follows the guidelines: “EVERYONE is happy when I keep my hands to myself.” In addition, his behavioral therapist discusses with Alex the potential consequences of impulsive behaviors, asking him what can happen if he would throw some something or grab someone. He knows that those are bad behaviors and can verbalize that he doesn’t want to break things or hurt people. He will sometimes add, “That would be sad.”

One of the recent changes that we have noticed is that Alex is showing interest in stories that have a plot. An avid reader, he has always preferred to read nonfiction works, especially reference books such as almanacs, encyclopedias, and dictionaries, to fiction works. Not surprisingly, his viewing preferences followed his reading choices, and he generally only watched game shows and news programs on television. After he lost interest in watching Disney cartoon movies, he never showed much interest in watching other kinds of movies. We were never sure whether this was a personal taste of his, or whether he couldn’t focus for an extended period of time or follow a story with a plot. Nonetheless, he has recently begun watching television shows and movies, enjoying them thoroughly. He has become a fan of two of my old favorites, The Waltons and Little House on the Prairie, following the struggles and triumphs of the Walton family in the 1930’s and 40’s and the Ingalls family of the late 1800’s. Even though their lives are quite different from his, Alex seems to show concern for the problems the characters face and acts pleased when they are able to overcome their struggles. Perhaps these shows have taught him how other people think and react in different situations.

According to the article in Science magazine, researchers discovered that those who read literary fiction did much better on Theory of Mind testing than those who read nonfiction, popular fiction, or nothing at all. Perhaps literary fiction allows the reader to identify with characters and then apply their understanding to people in real life. As an English teacher, I often take a psychological approach to literature, teaching my students to identify characters’ motives and to assess why characters act as they do in their circumstances. Although I wasn’t thinking about Theory of Mind specifically, I have always wanted my students to apply literature to their own lives to give real meaning to what they have read. As Common Core Standards become the educational guidelines for nearly all of the United States, their emphasis upon nonfiction could be potentially damaging for the development of students’ social skills. While nonfiction has its place in the real world, those of us who know the value of literary fiction will need to make certain students have the opportunity to read works that make them think about how humans deal with problems and interact with others so that they may develop their own interpersonal skills. With this in mind, I hope to engage Alex in more literary fiction, introducing him to some of my favorite characters so that he can not only enjoy interesting plots, but also learn from characters who can further develop his Theory of Mind and his social skills. As always, we try to keep Alex moving forward so that he can reach his full potential.

“All the believers were united in heart and mind. And they felt that what they owned was not their own, so they shared everything they had.” Acts 4:32