Perspective and Potential in Autism

To gain greater understanding of their children with autism, parents may seek the first-hand accounts from high functioning adults with autism. In “What It’s Like Growing Up Autistic,” published online in Folks last week on September 12^th, Alyssa Gonzales shares her experiences and explains her perspectives. [To read this article, please click here.] While she offers clear explanations for common behaviors in autism, she also candidly and rather harshly condemns her parents.

First, she explains why she has trouble with eye contact. Although she admits, “I have never liked making eye contact,” she notes that she was never aware of her lack of eye contact until high school. Once others commented on her lack of eye contact, she practiced during classes by looking across the room at people, only to find them angry or uncomfortable that she was staring at them. She further explains that making eye contact with people up close is “overwhelming” and “intense,” creating “alarm and discomfort.” Consequently, she has learned to look at people’s faces without looking at their eyes. However, she finds eyes appealing, even if eye contact proves difficult, admitting, “I love eyes. But they are too much for me to deal with when they are looking back.”

Another problem for her is dealing with loud noises. To cope with sounds that overwhelm her, she only goes to outdoor concerts and sits far from the stage, plugs her ears when she hears loud noises, and wears earplugs at times. She notes, “My family has always felt the need to push me to accept louder environments…And to a certain extent, it worked.” To illustrate, she explains, “Practicing being in loud rooms gave me the fortitude to survive some parties long enough to collect some cherished memories.” However, she admits that she did not enjoy dealing with the noise associated with these special times.

To cope with anxiety, she finds touch soothing, such as holding a smooth rock or wringing her hands or holding onto a banister. In addition, she likes to lean on furniture when she talks to other people. By touching objects, she feels “grounded” and “connected to this space, instead of wafting through it like a ghostly breeze.”

After explaining aspects of life that prove difficult, the author describes the things she loves best—her fixations and passions. For example, she enjoyed reading dictionaries and encyclopedias, memorizing scientific information, and making lists of the countries of the world. She notes, “I brim with enthusiasm I don’t know how to share.” However, she has learned to contain her enthusiasm, which she believes people use as “a weapon” against her. Specifically, she says that people may see her as “weird” or “a mutant,” even blaming her for recommending a movie they don’t like. By keeping these passions to herself, people now perceive her as “withdrawn.”

In her attempts to adapt to the world, the author seems to harbor bitterness toward those who apparently tried to help her cope, namely her family, friends, and teachers. She blames them for trying to change her and states that “they should have known I could never shed or suppress or unlearn” the aspects that make her untypical. Furthermore, she asserts, “If only they’d just let me go ahead and be autistic instead of pressing me into this world’s joyless mold, perhaps I would have been happier. How could they not tell?” Continuing her criticism of those who apparently ruined her life, she proclaims, “If only I had been supported in who I was, just imagine who I would have been allowed to become.”

While I appreciate Alyssa Gonzales’ willingness to share her experiences with autism candidly, I think she may have perceived intentions to help as intrusions on her life. Certainly, life with autism is difficult, but raising a child with autism is also difficult. In trying to help a child with autism cope in a world that overwhelms at times, parents may make mistakes, but I would venture those mistakes are made out of love. Knowing that others may not view certain autistic behaviors as acceptable, parents and teachers may teach the child alternative ways to cope with anxiety and to interact with others positively, hoping to prevent them from being victims of bullying, which is all too common.

Most of all, I’m sorry that Alyssa Gonzales sees the world as “joyless” and believes that her potential and happiness were quashed by the actions of those around her. Perhaps, she could instead look at what she has been able to accomplish, such as her ability to express herself clearly through writing, and find joy and a sense of pride in her achievements. As we continue to work with Alex on his social skills, we know that he needs to learn how to speak and act in such a way that others find him likeable. As we see him interact with others, we realize that he is developing a charm that engages people, and we are thankful for this progress. Certainly, we hope that he will not look back resentfully on our heartfelt efforts to make his life better. However, with the joyous approach Alex takes to life, I believe he understands that our unconditional love for him motivates our drive to help him reach his full potential as he overcomes the obstacles autism has presented.

“…for everyone born of God overcomes the world. This is the victory that has overcome the world, even our faith.” I John 5:4

Communicating Kindness

Like many people with autism, social skills do not come naturally to Alex. With difficulties in communication and sensory issues, he can find dealing with others somewhat overwhelming. Nonetheless, he likes interacting with people, so he is willing to be taught the social graces that most people learn more easily. Even at age twenty-six, Alex often needs reminders to say “Hello” and “Goodbye” to people as well as cues to say “Please” and “Thank you.” As a major part of behavioral therapy, his therapist works with him to develop social skills, and Ed and I reinforce these skills many times every day.

Among the social skills his behavioral therapist has taught Alex is reciprocal conversation, that is, learning how to have a give-and-take conversation with another person. She often models the behavior by asking Alex questions and then has him ask her similar questions. With time and practice, he is getting better at making conversation, but he still relies upon prompts. Last week, his music therapist was telling about a recent family vacation. I then asked Alex to come up with two questions he could ask about that vacation. Immediately, Alex asked him the name of the town they visited and how far the drive was to get there. While this shows Alex’s areas of interest––geography and statistics––those were still good questions to show interest in his therapist’s trip.

Perhaps because I have been working on reciprocal conversation with Alex, I am more aware of how people who don’t struggle with autism make conversation. Sometimes, I am surprised by how some typical people run monologues instead of dialogues. As a person who cares about others and asks questions about their families, I’m disappointed and even hurt when they fail to ask about Alex after I have shown interest in them by asking about their children. Unlike me, who takes things like that personally, Ed overlooks the omission and cuts others slack, assuming that they don’t know what to ask about Alex because he has autism. Maybe people are fearful that we would tell upsetting anecdotes, but no matter how things are going, we would always assure people that we are “fine.” However, it’s always nice to be asked anyway.

Recently, one of my favorite autism mom bloggers, Cathy Jameson, posted a terrific article on the Age of Autism website titled “Befriending Autism” regarding the discomfort others may feel about being around someone with autism. [To read this essay, please click here.] Noting that some people aren’t sure what to do or say when they see her son who has autism, she doesn’t want to make them feel more uncomfortable. Instead, she offers, “I thought of a few things they, and others in similar situations, might want to try when they see us next.”

The first four suggestions are simple and direct: wave, say hi, ask (how she’s doing and how her son is doing), and listen to her. As someone who likes mnemonic devices to remember concepts, I would use the acronym LAWS (listen/ask/wave/say hi). Her fifth suggestion may require more effort: “Be you.” She goes on to explain that she wants to catch up with the other person’s news, but she would also appreciate the other person talking to her son, even though he can’t respond verbally. However, as she explains, he can hear and see and recognize whether people are genuine or not. More importantly, she states, “When you shower him with kindness, you shower all of us with kindness.”

Because we have been blessed with people in our lives who have shown Alex special kindness––even some of whom we barely know––we have seen that the tips Cathy Jameson offers work wonders. Few things please Ed and me more than when coworkers or friends ask us how Alex is doing and make it even sweeter by asking us to say hello to him for them. Parents like to be asked about their kids, and autism parents are no exception.

From having observed kind people interacting positively with Alex, I can make a few suggestions about how someone might talk to a person with autism.

1. Call people by name first to help get their attention. Alex is often overwhelmed by all the sensory stimuli around him, but his ears perk up when he hears his name.

2.  Realize that the person may appear to be ignoring you, especially because eye contact is often difficult for people with autism, but they are probably paying more attention than you would ever think.

3.  Find out from parents what the child’s current interest is so that you know what questions you could ask. For example, one of the ladies who works at a nearby fast food restaurant shares Alex’s love of the Chicago Cubs, so she asks him what time the next game is, knowing this is something he’s happy to tell her.

4.  Offer a sincere compliment. “I like your shirt.” “You have a great smile.” “You’re being so patient.” “I’m so happy to see you.” Not only did these nice comments please Alex, but they made his parents proud, too.

5.  Give the person plenty of time to respond to a question. Alex takes time to process what is said to him and more time to come up with an answer. Sometimes parents may intervene by repeating or rephrasing the question or by cueing the child to answer.

While interacting with children and adults who have autism may be uncomfortable, even simple gestures, such as waving or saying hello, can mean a great deal to people with autism and their families. For one thing, these situations enable people with autism to practice their social skills. Certainly, those who make the effort will likely find themselves endeared to the parents of the child with autism. Those who engage Alex in conversation may witness the shudder of joy, in which puts his hands between his knees as he grins and shudders, trying to contain how happy he is. In addition, those sweet souls may become part of Alex’s nightly prayer list. I have to think that, indeed, God will bless those whom Alex names, knowing that their kind gestures touched the heart of a young man with autism.

“Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness, and patience.” Colossians 3:12

A New Approach to Interpreting Autism Behaviors

Because impaired social skills are usually associated with autism, researchers have often concluded that most people with autism prefer not to interact with others. However, a fascinating research article recently published online in the journal Behavioral and Brain Sciences contradicts previous assertions that people with autism lack motivation to engage with others socially. In “Being vs. Appearing Socially Uninterested: Challenging Assumptions about Social Motivation in Autism,” psychology professors Vikram Jaswal, the father of a daughter with autism, and Nameera Akhtar provide a fresh and informed perspective as to why people with autism engage in behaviors that may appear anti-social.

In their 84-page article (which can be accessed by clicking here), these researchers examine four behaviors commonly seen in autism and previously attributed to a lack of social interest: limited eye contact, infrequent pointing, repetitive body movements, and repeating phrases, or echolalia. As they conducted their research, they used interviews of children and adults with autism and their families, considered alternative reasons for behaviors, and examined unique ways people with autism use to express their interest in socializing. Explaining their novel approach, they note, “These steps are crucial, we believe, for creating a more accurate, humane, and useful science of autism.”

Previous scientific studies asserted that people with autism preferred not to interact socially. To demonstrate this view, the authors cite earlier research in which people with autism are described as “confined in their own world,” possessing a “powerful desire for aloneness,” and having “little or no social interest.” In contrast, the authors point out that behavior does not always truly reflect thoughts and feelings, providing the examples of people who smile when they’re sad or people whose Parkinson’s disease affects their speech that could make them appear aloof. While some behaviors in autism may be deliberate, such as avoiding eye contact due to anxiety, others can’t be controlled, such as repetitive hand movements. The authors assert, “These unusual behaviors do not have any necessary relation to social motivation, and some may constitute adaptive responses to the unique circumstances of being autistic.”

The first behavior discussed in this article, eye contact, is often considered lacking in autism. As the authors note, eye contact varies even among typical people, depending upon their personalities and their cultures. Too much or too little eye contact can give the perception of being rude. In addition, “gaze aversion,” or looking away, proves helpful for typical people as well as those with autism to help them concentrate and solve difficult problems. In their interviews with people who have autism, the authors discovered that people with autism might avoid eye contact because they find it easier to focus on what the other person is saying. Also, some people with autism find eye contact overwhelming or uncomfortable. They want to engage with others, but looking them in the eyes may be stressful, so they avoid eye contact, which may help them better focus on what the person is actually saying.

Another behavior that may be lacking in children with autism is pointing to obtain things or to share experiences or to draw attention to something. While this lack of pointing has been thought to be an indicator that children with autism do not wish to engage in social behavior, the authors instead conclude that motor impairments are the true reason. In interviews with people who have autism, they revealed difficulties in being able to move the ways they wanted. One adult with autism commented, “I had very little sensation of my body.” Consequently, pointing may not be an issue with social motivation but instead caused by motor and sensorimotor deficits. In addition, people with autism may have different interests than others and have different opinions as to what is worth sharing. As one adult with autism noted, ‘I’m not entertained by the ordinary things that most people enjoy.”

Along with lack of eye contact and pointing, repetitive body movements in autism have been connected to a lack of interest in socialization. These stereotypical behaviors include hand flapping, spinning, rocking, and finger flicking. For people with autism, these self-regulatory behaviors often act as coping responses to anxiety. As the authors note, all people engage in these types of behaviors; typical people might twirl their hair, bite their nails, or drum their fingers when stressed or bored. In people with autism these behaviors may be involuntary or intentional, but the authors emphasize that none of them have anything to do with social connections.

The fourth category of behaviors commonly associated with autism, echolalia, deals with the verbal repetition of words and phrases. These utterances may be dialogue people with autism have heard on television or in movies, or they may repeat words and phrases they have heard others say. Typically, researchers have deemed echolalia as meaningless, and this type of language is discouraged in children with autism. However, the authors reject the notion that echolalia serves no purpose; rather, they compare it to early language development in small children. They state, “But just because a listener is unable to decipher the meaning of an utterance in a particular context does not mean that the speaker did not have one in mind.” For some people with autism, echolalia conveys anxiety and may help with stress, just as a typical person repeats a mantra. Some may use echolalia to get others’ attention by using phrases they can say easily, and what others perceive as “nonsense” may be a phrase misunderstood because of difficulty with pronunciation. Therefore, the authors emphasize the need to find meaning and make connections in echolalia because this behavior indicates the person with autism needs and wants to interact through communication.

By re-examining these four behaviors common in autism, the authors conclude that people with autism want to interact with others, but they have different ways of showing this interest in socialization. Moreover, they contradict previous views of autism behaviors as deficits in social motivation by offering valid alternate explanations, supported by interviews with people affected by autism. Finally, they point out that the previous perception of people with autism lacking social motivation negatively affects research and intervention. For example, therapists, teachers, and parents often encourage children with autism to make eye contact and discourage them from using repetitive motions and echolalia. These attempts to change behaviors may leave the child with autism frustrated and anxious, and the child’s “motivation to engage with someone might diminish.” Ironically, in trying to make the child more social, these methods may make them less social. In addition, some therapists, teachers, and parents may mistakenly believe that children with autism do not want to interact with others and leave them alone. Again, in misunderstanding the behaviors, they may not provide precisely what the child needs and wants––social interaction with others.

With Alex, we have witnessed how the common behaviors of autism have faded over time. His eye contact has improved as his anxiety has subsided, but if he is concentrating on something, he may need to look away. When he was little, he had trouble pointing to things, and would use his flat hand instead to point out something. Clearly, his fine motor delays hindered his ability to use his index finger as a pointer. Over time, he has gained a bit more control and can point to things, usually words (often on signs) he wants us to see or insects he wants us to remove from his vicinity. Although Alex doesn’t repeat lines from television or movies, he does have certain pat phrases he repeats throughout the day. Several times a day, he tells us about “young voices” he heard on television or dates that have special meaning for him or certain events he remembers. When he’s really upset, he’ll complain about gas prices or not wanting to use a typewriter. Though these comments may seem out of place, he has trouble expressing himself, especially when he’s anxious, and he knows these phrases will cue us he’s concerned. Speech has always been a struggle for him, and he relies upon phrases he’s perfected through many repetitions to get our attention, share experiences, and convey his thoughts and feelings. He obviously wants to interact with others, but delays in language and motor skills, along with sensory issues, make socialization difficult. Nonetheless, Alex shows perseverance and continually works to overcome these obstacles of autism.

While autism may remain a mystery to many, those of us who parent children with autism have learned many of the secrets they hold in their minds that process the world differently than the rest of us. That the father of a child with autism would pursue the real reasons for common behaviors, despite how they contradict the tenets held by most autism researchers, doesn’t surprise me a bit. When all the pieces of the so-called autism puzzle are finally found and assembled, the workers around the table are likely to be parents of children with autism, striving and seeking to find ways to make their children’s lives the best that they could be.

“There is no speech and there are no words, yet their voice is heard.” Psalm 19:3

Proclamations

 

Since autism significantly impairs Alex’s speech, he tends to speak quietly and hesitantly, unsure of his ability to communicate effectively. We often have to ask him to repeat what he has said––sometimes because we didn’t understand him and other times because we didn’t hear him. However, sometimes he suddenly bursts forth with proclamations of something he wants to tell us––observations on life, patterns he’s noted, or some fact he finds especially interesting––announcing these statements clearly and confidently.

For example, yesterday I was showing Alex a large foam cut-out of a hand my dad had gotten for him at a recent Valparaiso University basketball game. While most so-called foam fingers have only the index finger raised as a symbol of being number one, this hand had two fingers raised. When I asked Alex if he knew why it had two fingers raised instead of one, he immediately explained that the fingers were in the shape of a V for Valparaiso.

Then I could tell that his mind was processing something from our discussion. Suddenly, he announced, “V is a somewhat rare letter.” As I showed interest in his statement, he went through all the letters of the alphabet, informing me which letters were “common,” “rare,” and “somewhat rare.” Clearly, he has watched enough Wheel of Fortune to determine the commonality and rarity of each letter of the alphabet as he confidently ascribed a value for every letter from A-Z. Later, he informed us, “There are about four thousand words that start with V.” I’m not certain whether he knew this fact or had looked it up online, but he wanted to share this bit of trivia with us.

Another announcement Alex likes to make is his assessment of people’s voices on television. He is fascinated by people’s voices, especially if they are deep or high pitched. Moreover, if he finds a person’s voice doesn’t meet with his expectations, he feels a need to share that anomaly with us. For instance, he’ll come running to tell us excitedly, “It’s rare for a kid to have a deep voice!” Lately, he has a fascination with older people and what he has dubbed “old man’s voice” and “old lady’s voice.” However, he’s even more fascinated when elderly people don’t have the qualities of the “old man/lady voice.” The other day, he enthusiastically shared that he had seen on television “some 93-year-old man who didn’t have an old man’s voice.” I’m not sure who would have been happier, Alex, who saw the old man with a young man’s voice, or the 93-year-old who had what Alex deemed was a young voice.

In addition to announcing his observations about the world around him, Alex also likes to proclaim changes he has noted in himself. Not surprisingly, he measures time by his own voice changes, telling us, for example, that in 1993, he had a “young voice.” (Previously he referred to his childish voice as a “little voice,” but has since changed the wording. If we use the phrase “little voice,” he will correct us, making sure we use the new lingo of “young voice,” which he now has decided is more accurate.) As with the “old man/old lady voices,” he will often come running to find us when he’s watching television and hears a particular date to announce the status of his voice at that particular year in time. Probably because we respond to his enthusiasm with praise, happy that he wants to tell us something, he never tires of making these announcements.

After bumping his knee last week and winding up with a bruise, Alex realized that certain motions were painful and compensated by favoring his other leg. So that he won’t obsess on an injury, we keep an eye on the healing without saying much to him. Perhaps because we don’t talk about whether it still hurts or not, Alex will happily inform us when he notices he is feeling better. The other day, he must have recognized that his bruised knee had improved because he suddenly exclaimed, “The knee is all better now!” Not only was I glad the pain had subsided, but also that he could clearly express his joy that he noticed his knee had returned to normal.

Maybe the most out-of-the blue announcement he’s made lately came yesterday evening when he proclaimed: “We can go to Chesterton now!” Chesterton is the nearby town where Alex has enjoyed going to restaurants. However, since his loss of appetite started in May, he hasn’t wanted to go to restaurants because he hasn’t felt like eating as much as he used to. The thought of going to a restaurant, which used to be one of his favorite things to do, seemed to bring anxiety, so we haven’t been to Chesterton for a while. We’re hoping that his proclamation yesterday means that he’s willing to try dining out again and perhaps he senses that his appetite is improving. Fingers crossed and prayers said, we’re hopeful that Alex’s announcement means that he is getting better. Of course, we know that moving forward will take some time and patience, but we see his announcement as a good sign that he is making progress. We’ll know better once we make that return trip to a Chesterton restaurant.

Although people with autism stereotypically do not seem to care about sharing interests or enjoyment with others, Alex clearly likes to share what he’s seen, heard, and learned. Since approximately half of people with autism are nonverbal, we know how blessed we are that Alex can speak and tell us what he’s thinking. Moreover, we’re delighted that he wants to interact with people and share his thoughts, feelings, and ideas. By encouraging him with enthusiasm and praise, we hope that he continues to develop his language and social skills, knowing that he has a unique perspective and unbridled joy to offer those who are willing to listen to him.

“I will tell everyone about Your righteousness. All day long I will proclaim Your saving power, though I am not skilled with words.” Psalm 71:15

Thinking Caps and Name Tags

 

Every year, I ponder and search for what I think is the perfect Christmas gift for Alex. This year was no exception. Shortly before Christmas, a friend of mine told me that the website for Jeopardy, one of Alex’s favorite game shows, was now selling merchandise with the Jeopardy logo. First, I found a t-shirt emblazoned with “I’ll take fast cars for $200,” which seemed appropriate because it combines Alex’s love of Jeopardy and NASCAR. After ordering that, I found a baseball cap embroidered with the Jeopardy logo that I knew he would love; baseball cap plus Jeopardy plus his favorite color, red, had to be the perfect gift. However, when he opened it on Christmas morning, he wasn’t as enthralled as I thought he would be. Nonetheless, he seemed pleased with his Christmas gifts and was gracious enough to thank us for them.

Knowing that Alex sometimes gets overwhelmed by too many new things, such as all the gifts at Christmas, I didn’t give too much thought to his reaction or lack thereof to the Jeopardy hat. If I thought he didn’t like it, I was wrong. The next week, he came strolling into the family room precisely––as he does every weekday afternoon––at 3:28, ready for Jeopardy to start at 3:30, proudly wearing his Jeopardy hat. In fact, he wore it for the entire show and took it off immediately when the show was over. The next day, he repeated the routine, wearing his Jeopardy hat only for the show. Apparently, he thinks that he can only wear it when the show is airing, and he has continued this ritual since then. I tell him that it’s his thinking cap, and he does seem to be quicker about answering questions when he wears the Jeopardy cap. Maybe like Frosty the Snowman’s top hat, there’s some magic in there.

Another Christmas gift we gave Alex was a Burger King gift card. He likes the idea of being able to pay for his own food, and he manages better with a gift card than trying to handle cash. Nearly every Friday afternoon, his behavioral therapist and I take him to our nearby Burger King for recreational therapy so that he learns how to interact appropriately with other people: waiting in line, ordering his food, using please and thank you, and clearing his tray when he leaves. Apparently, he has endeared himself to some of the staff there who are on a first-name basis with him; he returns their kindness by naming them in his nightly prayers. Two of his favorites even gave him a Chicago Cubs World Series ornament personalized with his name for Christmas, which delighted him, and I think his obvious joy delighted them, too.

Recently, Ed had a reception at work and would not be coming home for dinner, so Alex and I decided to go out for dinner. Knowing that Alex feels comfortable at Burger King, I thought that would be a good choice. As we waited to order our food, I noticed that the young man taking orders was heavily tattooed and had assorted piercings. Wondering whether Alex would notice the worker’s appearance and hoping that he would not feel the need to make any comments, I was ready to intervene. If necessary, I would subtly and quietly remind Alex not to stare or say rude things. When we walked up to give our order, I tried not to stare myself and hoped Alex would use the social skills his behavioral therapist and Ed and I have taught him.

While getting ready to give our order, I saw that Alex was looking at the young man and smiling a bemused smile. When the worker greeted us, Alex started to speak, and I was a little worried because I had no idea what he would say. Suddenly, “Hi, Joey!” came from his mouth. Startled but relieved, I realized that Alex had not been looking at the young man’s tattoos or piercings, but instead was checking out his name tag so that he could say hello. Unlike me, Alex was able to overlook this young man’s appearance and seek a way to interact with him positively, greeting him by name, just as the friendly Burger King employees have done with him. He knows that it makes him feel good for people to call him by name, and he returned the favor. Interestingly enough, Alex has also added Joey to his nightly bedtime prayer list. How proud I am to have raised a son with a heart so pure that he looks beyond appearances and sees the real person behind them! Now, that is a perfect gift that he gives to me.

“Give, and you will receive. Your gift will return to you in full––pressed down, shaken together to make room for more, running over, and poured into your lap. The amount you give will determine the amount you get back.” Luke 6:38

Friends

 

Earlier this month, the media reported the heartwarming story of the Florida State University football player, Travis Rudolph, who was visiting a Florida middle school and saw a student sitting by himself at lunch. This boy, Bo Paske, has autism and usually eats lunch alone. However, on that day, Travis Rudolph asked Bo if he could sit with him, and this story of kindness went viral on the Internet. While this incident revealed how children with autism are often isolated from their peers, it also showed the tremendous value of a simple act of kindness. This story drew attention to the problems kids with autism have regarding social skills and apparently had a happy ending. Not only did Bo enjoy lunch with a college football player, but also reportedly his classmates now choose to join him for lunch so that he no longer has to eat by himself.

Last week, another story about how kids with autism feel isolated from their peers also went viral in the media. As Fox News reported in an online article, “New Jersey dad pens touching letter after autistic son says he has no friends,” autism dad Bob Cornelius posted a letter on Facebook this week after seeing a worksheet that asked his son to list his friends, and his son had written “No one.” [To read this article, please click here.] What was especially heartbreaking about this situation was that the father saw the worksheet posted on the wall as a display for back-to-school night. At the time, the father didn’t read through all the responses; he simply took a quick picture of the worksheet. After he got home, he then saw what his son had written in response to the prompt, “Some of my friends are…”

In his candid Facebook post, Bob Cornelius explains the sad truth that his eleven-year-old son, Christopher, has never had a friend. While he recognizes that some of his son’s behaviors, such as hand flapping and noise making and asking unusual questions might make some people feel uncomfortable, he also notes, “Every adult that meets him is drawn to him.” [To read this Facebook post, please click here.] In addition, he says that while his son’s peers have never been mean to him, they have never included him, either, leaving him out of activities and making him realize that he has no friends.

Reflecting no anger or bitterness for his son’s situation, this autism dad’s letter admits that he doesn’t think “this post is going to change the world.” However, he asks parents to talk with their children about making the effort to show empathy and “include those that are different from everybody else.” As he points out, “at the end of the day, it comes down to compassion, empathy and understanding.” I am hopeful that his post will have greater impact than he expects, and I hope the media attention his letter is getting will make a difference in the lives of those kids with autism who don’t have friends. Perhaps people will recognize that making an effort to interact with children and adults who have autism not only blesses those with autism but also themselves through these acts of kindness and compassion.

As an autism mom, I can empathize with the sorrow Christopher’s dad feels that his son doesn’t have friends. In the sense of typical friendship, Alex has never really had those kinds of friends, either. By home schooling him, we protected him from that reality because he never saw himself as different from his peers. I remember doing a worksheet with him one time that was similar to the one posted on the back-to-school night wall. When Alex was asked to list his friends, he immediately told me, “Nanny,” his grandmother and my mom. At the time, I thought that was sweet; after all, she’s been my dearest friend all of my life and someone I know will always be loving, kind, and loyal to my son. However, growing up, Alex has never had friends his own age. Fortunately, he doesn’t seem to notice or care, and now that he is an adult, he can enjoy the company of the adults whom he has always preferred, anyway.

After reading this story the other day, I asked Alex who his friends are. Without hesitation, he named his dad and me and Nanny and Grandpa. Then I asked him who his friends are who are not his relatives, and he named his wonderful support team: Jennifer, Noel, Jessica, and Zika. (I would also add his aunts, uncles, and cousins who have been loving and understanding, along with some of my friends who show him kindness and interest.) Clearly, Alex has a keen sense of who cares about him. Moreover, if I had to handpick friends for him, I would choose those he considers his friends because I know they always have his best interests at heart. As his social skills develop, I see Alex’s interactions with others improving and enabling him to make more friends in the future, which is encouraging.

To me, what was equally troubling about this story of Christopher’s not having friends was the lack of good judgment and compassion his teacher showed by posting this worksheet for back-to-school night. I gather from his dad’s Facebook post that his son is in a special needs class. Surely, the teacher realizes that special needs kids, especially those with autism, have difficulty making friends. According to Christopher’s worksheet, his teacher’s name is Ms. Feld, and I would like to write a letter to her.

Dear Ms. Feld:

Like you, I am a middle school teacher of special needs children. Perhaps you have not had the more than thirty years of teaching experience that I have had. However, the posting of Christopher’s worksheet on the wall for everyone to see his heartbreaking response to the question regarding who his friends are was at best lacking good sense and at worst simply cruel. Did you stop to think about how his parents might feel in seeing that he had written “No one” in response to who his friends are? Did you consider for a moment that posting this worksheet for anyone to see was just wrong? In fact, let’s go back to the beginning. Did you even recognize that this worksheet was not appropriate for special needs children? As teachers, we know that we must modify assignments to make them suitable for our special needs students. If you ever plan to use this worksheet again, I strongly suggest that you omit the question about friends so that no child has to feel the sense of loss that Christopher––as well as his parents––had to feel as a result of your carelessness. In fact, I have a better solution. Take that worksheet and place it in the paper shredder so that you are never tempted to use it again. After all the publicity this worksheet has received this week, I hope that you have learned, as we teachers must constantly strive to do, an important lesson: try to put yourself in your students’ shoes before putting them on the spot.

Sincerely,

Mrs. Byrne, middle school English teacher/Alex’s mom

“A friend is always loyal, and a brother is born to help in times of need.” Proverbs 17:17

Courtesy

 

As the school year winds to a close, I have been trying to figure out what last lessons I want to teach my students in the upcoming few days I have left with them. The other day, I ran across a list Reddit compiled of courtesies that are not always practiced, which I think I will share with my classes. Posted on the website 22 Words by Abby Heugel, this list is titled “30 Things So Obvious You Should NEVER Have To Be Asked To Do Them.” [To see this list, please click here.] After running errands yesterday morning and running into all sorts of rude behavior, I realized that far too many people either have not learned these supposedly obvious lessons or have chosen to ignore them and need to be reminded of them.

Perhaps the value of these polite concepts is clearer to me because autism impairs Alex’s social skills, and we must remind him to use his manners. As an autism mom who constantly strives to make Alex a better person and as a teacher who wants to share what I’ve learned, I would like to pass along these helpful social skills. Of course, the English teacher in me needed to revise the wording and reorganize the list order from its original format, but I hope these important lessons may prove useful.

Driving and Door Do's

When driving, use the turn signal so other drivers know your intentions.

When another driver lets you in, give them the “thank you” nod or wave.

When someone holds the door open for you, say thank you.

Let the person who held the door for you go ahead of you in line.

Golden Rule Reminders

Say please and thank you to customer service employees.

Be courteous to waiters and waitresses.

“Clean Up, Clean Up, Everybody Clean Up!”

If you made a mess in public or at work, clean it up.

Put away equipment you used at the gym.

Clean up after your dog.

If you are a guest at someone’s house, clean up any messes you made.

Throw away your garbage.

Before putting dishes in the sink or dishwasher, scrape off the food.

Close doors, cabinets, and drawers when you are finished.

Restroom Rules

After using the toilet, flush it and wipe away mess on the seat.

If the toilet paper roll is empty, replace it.

After using the bathroom, wash your hands.

When washing your hands in a public restroom, don’t leave a mess with the water and paper towels.

Shopping Etiquette

Don’t suddenly stop walking in the middle of an aisle or sidewalk.

If you are in line with a full cart, let the person with one or two items go ahead of you.

Don’t leave shopping carts in parking spots; put them in the return areas.

Common Courtesy

Don’t take up an extra seat with your belongings if the bus or train is getting full.

Be punctual, and if you’re going to be late or not going, let the other person know.

Close your mouth when you chew.

When you cough or sneeze, cover your mouth.

Respect personal space.

Make your children behave in public.

On weekends, don’t use your lawn mower before 8 A.M.

If you owe money, pay it back.

Don’t interrupt when someone is speaking.

When you are conversing with people, look at them and not your phone.

After reviewing these thirty helpful suggestions, I noticed the common thread involved in common courtesy: we must put others’ comfort and feelings ahead of our own inherently selfish behaviors. While this may not always come naturally, certainly the benefits are worthwhile. I’m reminded of a line in the play that I teach my seventh graders every year, A Christmas Carol: Scrooge and Marley, said by Jacob Marley: “An act of kindness is like the first green grape of summer: one leads to another and another and another…the gift of goodness one feels in the giving is full of life. It…is…a…wonder.”

Certainly, I hope my students leave my classroom with increased knowledge of literature and writing and critical thinking, but more importantly, I hope they take with them a value of kindness and courtesy, the same lessons I have been teaching Alex for more than two dozen years. Although manners and polite social behavior don’t appear in state standards for instruction, nor are they part of standardized testing, I’m convinced that few things in life are more valuable than learning social skills. And now, I’m off to clean up the mess of papers and books I’ve left on my coffee table; after all, that’s the polite thing to do.

“Do to others as you would like them to do to you.” Luke 6:31

The Eyes Have It: Eye Contact and Autism

 

One of the most obvious aspects of autism is the difficulty with making eye contact. Apparently, eye contact is becoming a problem not just for people with autism but also for young people who spend much of their time looking at cell phones and tablets. Yesterday I ran across an interesting online article from The Wall Street Journal entitled “Just Look Me in the Eye Already” that discusses this issue. Written by Sue Shellenbager and published May 28, 2013, this article points out that lack of eye contact can be a hindrance in work settings. [To read this article, please click here.]

According to research cited in this article, adults typically make eye contact 30-60% of the time in average conversation. However, eye contact should be made 60-70% of the time to establish emotional connections, studies show. As young adults have become accustomed to multitasking and using their mobile devices frequently, eye contact has declined. Psychologists attribute this need to constantly check social media on FOMO, or the fear of missing out on social opportunities. Ironically, while they are checking social media, they are missing out on the chance to interact with others socially in person.

Researchers also indicate that the decline in eye contact has occurred with the increase of telecommuting, where people become accustomed to communicating with others via telephone or computers and not having to make eye contact. However, eye contact can significantly influence others, which makes this skill important in work and social settings. Studies show that good eye contact conveys confidence, determination, and most of all, respect. Those who avoid eye contact are often perceived as “untrustworthy, unknowledgeable, and nervous.”

Studies have shown that eye contact must be held for certain amounts of time to be effective. In one-on-one settings, 7-10 seconds gazes are optimum, while 3-5 seconds of eye contact is best for group settings. In the work setting, too much eye contact (more than 10 seconds) causes the person to be viewed as aggressive or insincere. In social situations, too much eye contact may be a “sign of romantic interest or just plain creepy.”

For many who have autism, eye contact is a skill that must be taught because it does not appear to develop naturally. Some therapists aggressively attack this skill by grabbing children’s faces and insisting that they look at them. Others will repeatedly admonish children with autism: “Look at me!” or “Look me in the eyes!” However, children with autism may avoid eye contact not just because of impaired social skills but also because of sensory issues where they have trouble listening and looking at the same time.

Another possible reason why people with autism have impaired eye contact may be a motor skill issue. In the article “Why Kids with Autism May Avoid Eye Contact,” written by Karen Rowan and published online in Livescience on June 5, 2013, the problem with eye contact is linked to issues with brain processing. [To read this article, please click here.]

This article cites research done at Albert Einstein Medical College in New York in which children were shown a checkerboard pattern on a screen while electrodes measured their brain activity. Typical children showed response in their brains indicating that they were processing this information in the center of the visual field, while children with autism were processing this information in the peripheral field of vision. This makes total sense to me because we often see Alex looking off to the side instead of straight on at something. We have always suspected that his peripheral vision is stronger than his straight-on vision.

This study goes on to suggest that because motor skills are often impaired in children with autism, they may have a reduced ability early in life to control their eye muscle movements. Consequently, they get in the habit of using their peripheral vision instead of looking straight ahead. As a result, they do not develop good eye contact with other people, which is perceived as a poor social skill, but in all likelihood, is more of a motor issue.

Of course, eye contact is an important social skill, and we have worked with Alex so that others do not perceive him as rude or aloof or disengaged. In addition, we have to remind him not to look at people too long who catch his attention, especially little kids whom he innocently finds amusing, because we don’t want anyone to think he is “just plain creepy.” Along with his therapists, Ed and I gently remind him to look in the direction of people’s faces instead of keeping his head down, and we also gently remind him not to stare at people. Moreover, all of us praise him when he displays appropriate eye contact.

Certainly, we want Alex to develop all of his skills so that he can interact with others appropriately, but apparently he is not too unlike typical people his age in his lack of eye contact. Although we are thankful for the progress he is making in this regard, perhaps we just need to give him a cell phone to carry around everywhere, and no one will be the wiser that his issue is motor-related due to autism and not FOMO, due to being a multitasking young adult.

“Open my eyes to see the wonderful truths in your instructions.” Psalm 119:18

Conversation

 

This past week, a colleague who teaches special education at the school where I teach English was commenting that some of her students who have autism don’t realize that they have autism. In fact, some of their parents insist that they do not want their children to know that they have autism. As teachers of these children, we must respect the parents’ decision and be careful never to reveal that we know those children have been diagnosed with autism. My colleague, who knows that Alex has autism because we have always been open about his condition, then asked me, “Does Alex know he has autism?”

As I explained to her, Alex does, indeed, know that he has autism and has been aware of this diagnosis ever since he received it as a preschooler. We never wanted him to think that we were keeping a secret from him, and we thought that not telling him might make him think he should feel ashamed of having autism, which we certainly did not want. Just as parents who adopt children are encouraged to tell their young children that they have been adopted so that they grow up knowing the truth and don’t discover it later in life, we have always been candid with Alex about autism. Because autism impacts his life tremendously, we wanted him to understand why some things are more difficult for him than they are for other people. Alex knows that just as he has brown eyes and brown hair, he also has autism. We’ve never had to wonder when we should break the news to him because he already knows.

Being someone who likes knowing the origins of words, I find the etymology of the term autism interesting. Coming from the Greek root autos, meaning self, the word essentially means a state in which the person exists separately from others. As WebMD explains, “One symptom common to all types of autism is an inability to easily communicate and interact with others. In fact, some people with autism are unable to communicate at all. Others may have difficulty interpreting body language or holding a conversation.” (“History of Autism.” Web MD, 12 May 2013.)

Certainly, Alex’s struggle with spoken language has hindered his ability to interact with other people, and we have worked with him to improve his speech and social skills. For him, spoken English is like a foreign language to most of us, where he struggles not only to find quickly the words he wants to say but also to figure out the proper grammar and syntax. Add in sensory issues that overwhelm him, and I imagine that for him, holding a conversation is much like trying to make oneself heard in the midst of a middle school cafeteria at lunchtime. No wonder he prefers to sit quietly and just listen instead of engaging in the discussion!

On Friday evening, we went to my sister’s house to celebrate my niece’s birthday. In a room full of fourteen lively family members and one dog, Alex sat calmly and quietly, seeming to enjoy listening to the various conversations without being overwhelmed and even smiling as he heard things that amused him. At times, he would quietly imitate people, especially my sister, whose voice fascinates him, repeating what was said. Although we know this is not socially appropriate, we believe that Alex is practicing speech so that he can better interact with others. So long as he does this quietly without disturbing others, we allow him to do it. Moreover, we explain to others that he does this because he really likes the person whom he is imitating; truly, “Imitation is the sincerest form of flattery” when Alex repeats after other people.

As Alex sat contentedly enjoying the discussions, he seemed as though he wanted to join the conversation but did not know how. At one point, my brother was talking about NASCAR, one of Alex’s favorite topics, and Alex quietly but excitedly asked Ed and me, “Is Uncle Freddy getting tickets to a NASCAR race?” We explained that Uncle Freddy was talking about having a gift certificate to learn how to drive a racecar on a NASCAR track, which Alex seemed to find interesting. Later, he noticed that my niece’s boyfriend had holes in the knees of his jeans, and he quietly commented to Ed, “He needs to buy a new pair of jeans because he has holes in them.” Ed then quietly explained that he had probably bought them that way because that was the style. Alex seemed a bit perplexed, but accepted that explanation.

After that, as my niece Hannah was talking, Alex leaned over to me and asked with concern, “Does Hannah need to have surgery?” When he last saw Hannah, she was talking about going to the orthopedic specialist to see if she would need surgery on her hip this summer, and he wanted to know what the doctor had said. Realizing that Alex had been listening to conversations with interest and was concerned about other people, I knew that he really did want to participate in the discussion. Instead of answering him myself, I told him that he could ask Hannah himself. Although he was tentative, he asked her whether she would need surgery, and she seemed pleased that not only had he shown concern about her but also that he was relieved she would not need surgery.

Although autism makes conversation and social interaction difficult for Alex, he does not exist in his own world. He genuinely cares about other people, even if he doesn’t quite know how to talk to them, but he wants to engage with them and find out more about them. Indeed, he’s even showing concern about them. Even though we were a little worried about how he would handle being in a large group of people, we realized Friday evening how important it is to give Alex opportunities to practice the conversation skills and social skills we have been practicing at home with him. Clearly, he is learning these valuable life skills, and we are delighted to see him making progress in these areas. More importantly, we are thankful to see his concern for other people and evidence that he is learning how to express those concerns verbally, proving that he continues to overcome the obstacles autism has put in his path so that he can truly enjoy being with others.

“Let your conversation be gracious and attractive so that you will have the right response for everyone.” Colossians 4:6

Making Good Choices

 

When Alex first began behavioral therapy, the primary goal was to teach him to deal with his anxiety and aggression. However, as he has learned to manage these issues, his behavioral therapist has shifted the focus to helping him improve his social skills, a common difficulty for people with autism. To teach him appropriate ways to interact with others, we practice at home by discussing how he should behave and by using social stories so that he knows what he should and should not do. Moreover, we give him opportunities to practice what he’s learned by taking him to public places, such as restaurants, stores, and concerts. During these outings, we have been pleased that Alex demonstrates that he has learned well the lessons his social stories have taught. On the other hand, I have been astounded by the rudeness of some of the people we encounter out in public. While my temptation has been to say, “My son has autism, what’s your excuse?” I realize that they have not had the benefit of therapy that has taught him to interact appropriately. Consequently, I’d like to share some of the social skills lessons for those who could benefit from what Alex’s behavioral therapist calls “Making Good Choices.”

USE YOUR CALM DOWN SKILLS

Because Alex can become anxious and overwhelmed in certain situations, he needed to learn techniques to help calm him so that he doesn’t have meltdowns. He can listen to music, do deep breathing exercises, and/or count to ten in various languages (English, Spanish, French, German, and Turkish) to help him settle down. Although he may need to be reminded about these techniques when he’s upset, Alex can use them effectively to manage his anxiety. Last week, we encountered someone who could also benefit from these calm down skills when we were going with Alex’s behavioral therapist, Jennifer, for our weekly outing to practice social skills. As we approached the fast food restaurant where we were headed, I saw a fire truck and ambulance with flashing lights blocking our path and knew we would have to take an alternate route. Apparently, my action angered another driver who didn’t see why I had to turn, and I could tell from his facial expressions and from my limited lip reading skills that he wasn’t happy with me. To make sure I knew he was upset, he gave me the middle finger gesture. As Jennifer observed, “He wasn’t very friendly, was he?” While I put calm down skills to use so that I didn’t return any hostility, I realized that rude man should have been using his fingers to count instead of to insult me. Certainly, he needed some calm down skills so that he could make better choices.

USE YOUR MANNERS

We have worked with Alex to use polite phrases, such as, “Please,” “Thank you,” “You’re welcome,” and “Excuse me,” and he is still mastering saying them at the appropriate times and saying them loudly enough to be heard. However, I’ve noticed that many people who cannot use autism as an excuse also seem to have not mastered these skills. For example, we have practiced with Alex the scenario of saying “Thank you” when someone holds a door open for him, but I have found that some people seem to forget their manners when I’ve held doors open for them and say nothing to me. In addition, we’ve taught Alex to get out of people’s way when we’re in grocery store aisles or waiting in line, but I’m amazed by the people who stroll along, seemingly oblivious or even not caring that they are in someone else’s way. Also, Alex has learned by playing board games to wait his turn and to be ready when it is his turn so that he doesn’t make others wait. Sadly, some adults apparently have not learned this courtesy lesson, as I discovered in Panera Bread the other night when a couple held up the entire line, taking their sweet time to decide what they wanted and then taking unnecessary time to pay for their food, never once apologizing for their rude actions. Without a doubt, these types of inconsiderate people need to use their manners.

DON’T STARE

While Alex still struggles with making eye contact, a common issue found in people with autism, at times he finds something or someone interesting enough that causes him to cast a lingering look. Often, he may find someone’s voice engaging, or he may find children’s behavior amusing, and he watches them in delight. However, we remind him that staring is not polite. Apparently, not all parents teach their children this lesson. The other day, Alex, Jennifer, and I were at Burger King for our Friday social skills outing, and Alex had decided that he wanted to order his food himself. As he struggled a bit to order, the cashier was very sweet and patient with him, but I noticed two teenage girls staring at him and smirking. While my motherly protective instinctive reactions ranged from wanting to smack them to saying sarcastically, “Take a picture, it lasts longer!” to wanting to explain that he has autism, I realized that nothing I could say or do would teach these mean girls a lesson. Fortunately, Alex was oblivious to their rude behavior because he was so busy trying to use his manners. Following his lead, I used my calm down skills and my manners, and I didn’t stare back at them. As much as their behavior was hurtful, I could also feel sorry for them because unlike Alex, they either had not had loving people teach them how to act appropriately, or they were not working as hard as he is at using social skills. Not only am I thankful that Alex is trying to make good choices, but also that he never seems to notice those around him who fail to make those good choices. Despite the obstacles autism has put before him, he keeps striving to become a better person, and that good choice makes us proud.

“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” Galatians 6:9

The Kindness of Strangers

 

“Good Ways to Get People’s Attention” is one of the social stories Alex’s behavioral therapist has used to improve his social skills. Because words don’t come easily to Alex, he may resort to inappropriate behaviors, such as suddenly grabbing someone’s arm to get that person's attention. Instead, we needed to teach him socially appropriate ways to interact, especially since his stature at six feet tall could make him appear threatening to those who don’t know him. Not only does he read the story aloud repeatedly, but Alex also practices the skills detailed in the story so that he knows how to act when he is around other people. Specifically, the social story tells him that he can wave, raise his hand, shake hands, give a high five, or say, “Hi” or “Excuse me.” After repeating this exercise many times, Alex has made great progress, as we have seen him do what he has been taught, tapping my shoulder when we are in the car, raising his hand during a meeting with his team of support staff, and offering a high five to his therapists when they come to see him.

Last evening, as we were shopping at the grocery store for Thanksgiving dinner items, Alex put these skills to good use and was rewarded for his efforts. After collecting our list of groceries, we headed for the self-check line and were greeted warmly by the store clerk who was supervising the self-check registers. Apparently, Alex was impressed with her friendliness because he suddenly left our cart of groceries that he had pushed through the store, walked over to her, smiled, and tapped her gently on the shoulder, just as he had been taught in the social story he knows by heart. However, he didn’t know what to say to her once he had her attention, so he just smiled.

Even though he had done nothing wrong, Ed and I immediately sprang into action, not knowing how she might react to his gesture and not wanting him to bother her. Ed apologized and led Alex back to the grocery cart, and I noticed that the clerk had followed them. I asked Alex, “Did you want to shake her hand?” He lifted his left hand (as he always does, offering the wrong hand for a handshake), but she took his right hand in hers, giving him a nice handshake, which made him smile and seemed to please her.

Then Ed, still trying to smooth over a situation that could have been awkward, told Alex that the next time, he could just say hello instead. The kind woman then put her arm around Alex’s shoulder and said sweetly to him as though they were old friends, “That’s okay, anytime you see me, you can tap my arm. You are so precious.” What could have been an uncomfortable incident became a pleasant one because she reacted very kindly, understanding that Alex intended no harm; he just wanted to interact with her.

Before we left, I thanked her for being so kind to Alex, but she assured us that it was her pleasure, wished us a Happy Thanksgiving, and made a special point to say goodbye to Alex, who was still smiling. As we took the groceries to the car, I felt teary that a stranger could be so kind to my son and make him so happy. Although I suspect she recognized that Alex has autism, she responded with warmth and kindness instead of discomfort and avoidance. I hope that she was as blessed by this brief encounter as we were.

As we celebrate Thanksgiving this week, I’m thankful for the many blessings in our life:  our faith, family, and friends that sustain and bless us, the healing we have seen in Alex, and for the kindness of strangers who take the time to interact with Alex. To the pretty lady at the grocery store with the warm smile and kind heart, thank you for making Alex’s day. You should know that Alex has an innate sense for people who are especially nice, and he is drawn to them. You must be one of those people because he felt the need to reach out to you and get your attention. By responding to him with genuine affection, you have gained a new friend. That night after you called him “Precious” and told him that he could tap you on the shoulder whenever he saw you, he asked what your name was. Overwhelmed by my fear of your reaction to him as well as by your sweetness to him, I didn’t think to ask your name. However, we hope to see you again, and you should know that a young man with autism now includes you in his prayers as his “new friend” whom he wants God to bless. Indeed, I pray that you will be blessed for the kindness you have shown. While you dismissed it as “no problem,” to us it meant a great deal, and we are thankful.

“…And if you have a gift for showing kindness to others, do it gladly.” Romans 12:8

Special Requests

 

Last night, Alex, Ed and I were watching reruns of the television comedy series The Big Bang Theory, which is one of Alex’s favorite shows. One of the main characters, Sheldon, reminds us of Alex in some ways because, like Sheldon, he is funny and smart, but he also has difficulty with social skills and can be demanding at times. In the episode we were watching, Sheldon had a cold and was insisting that his friend Penny put Vicks VapoRub on his chest while she sang “Soft Kitty.” Although this scene was meant to be ridiculous and funny, I have played the role of Penny to Alex’s Sheldon, fulfilling his requests that things be done his way. In fact, sometimes I feel as though I’m a participant in a strange game show where Alex plays the host and expects me to follow his lead.

For example, Alex takes various pills four times a day, and I usually administer those pills at least three of the four times daily. Although Alex is very good about taking his pills, he insists that I must tell him the correct name for each one. Fortunately, I not only know the names of all his medications and supplements, but I also can recognize them by shape, size, and color, which makes reciting the names no problem for me. (Alex doesn’t know this, but I have also memorized the brand names and the generic names of all his medications. I dare not let him know, or he’ll want me to rattle off both names instead of just one.) When I’m at work, Ed gives him the morning doses of his medications, and Alex asks him to name the pills, too. However, Ed manages to escape that task by telling Alex that he counts the pills instead of identifying them and reminds him that only Mommy names them. Apparently, Alex is satisfied with that explanation, and Ed doesn’t have to learn which pills are which. I, on the other hand, must continue to play amateur pharmacist because Alex knows that I can name those pills. I’m never certain whether he is really interested in what he’s taking or if he’s trying to catch me making a mistake. Whatever his reasoning, I indulge his curiosity and show off my knowledge of which pill is which.

Another recent routine Alex has developed for us is vitals night. Every Saturday evening, Alex insists that we use our home electronic blood pressure cuff to measure the blood pressure and pulse for each of the three of us. Besides taking these vital statistics, he also wants me to write down our results so that he can compare the data. This weekly process has become somewhat competitive to see who has the lowest blood pressure and pulse. Although Alex, who certainly has the age advantage, usually wins this “competition,” last night, I had the lowest pulse, and last week I swept the challenge with the lowest blood pressure and pulse. Considering all the dancing I do to Alex’s tune, I’m amazed that my vitals don’t seem to reflect the stress I feel at times. Perhaps running around to meet his demands keeps me in good physical shape. Probably this weekly event is a good way to keep an eye on our health, and I’m proud of myself for not bowing to Alex’s request that we do this process every day, telling him that once a week was certainly often enough. Evidently, I was convincing because he didn’t question my resolve on that issue.

Aside from the health-related routines regarding medications and vitals, Alex also insists that we provide him with receipts from any purchases we make. Originally this started with letting him see our credit card receipts when we bought gasoline for the cars. We knew that he liked to follow gas price trends, and these receipts allowed him to monitor whether gas prices were going up or down. Lately, however, he wants to see all our receipts, such as those from grocery store or restaurants. I’m not sure whether he’s keeping mental notes about how much we spend or whether he’s just nosy about what we bought and where we bought it. We’ve learned simply to hand him our receipts the minute we walk in the door from shopping or errands so that he can study our purchase history, which seems to make him happy.

To be fair, he gets his need to retain receipts honestly from me. I always keep my receipts because I figure I’ll need them some time. (My friends who know the following story seem to find it amusing yet reflective of my OCD tendencies organizational skills.) When I was a sophomore in high school, I was called down to the principal’s office—the only time I was ever sent to the office when I was in school because I followed rules to the letter. On my way there, I tried to think of other students’ misbehavior I might have witnessed because I was certain I hadn’t done anything wrong. When I arrived, the principal told me that my homeroom teacher turned in my name because I hadn’t paid my book rental. I breathed a big sigh of relief and told him, “No, Sir, I did pay. In fact, I have my receipt right here.” As I pulled out my receipt to prove my innocence, he seemed bemused that I actually had the receipt handy, apologized to me, and told me I was pretty clever to be able to prove easily that I’d paid the book rental. Maybe Alex, like me, knows the value of keeping receipts. Somehow, I suspect that he just enjoys looking at the list of items and the prices and that he likes to make us jump through hoops. Luckily, I can rise to his challenges and play “Name That Pill” and “Provide That Receipt” with the best of them. Oh, and I can meet his demands all the while keeping my blood pressure low. However, he’d better not ask me to sing “Soft Kitty”; now that would be asking too much.

“At that time you won’t need to ask Me for anything. I tell you the truth, you will ask the Father directly, and He will grant your request because you use My name.” John 16:23

Social Skills in Adults with Autism

Yesterday, I was reading a rather discouraging article about autism in adults entitled “Social Skills, Contentment Evade Adults with Autism” by Jessa Netting. [To read this article, please click here.] Based upon two studies of adults with autism (which is a field with limited research since most studies focus upon children with autism), scientists found that while adults with autism made progress in some skills over time, they did not improve in others. Specifically, the studies found that adults with autism tended to improve in their adaptive living skills, which include tasks performed daily, such as grooming and managing money. Adults with autism also generally improve in their independent living skills—perhaps because their adaptive living skills progress over time—as evidenced by their ability to work at a job and live away from their parents. In addition, repetitive behaviors often found in children with autism tend to decrease in adulthood. However, these studies also found that language, cognitive, and social skills tend to remain stable in adults with autism and do not improve over time. Moreover, the research also showed that quality of life, which indicates contentment and satisfaction, tends to be lower in adults with autism than in typical adults.

Now that Alex is an adult, the findings of this research bother me because all parents want their children to reach their full potential and to find contentment in life. What bothers me more, however, is that this research goes no further at this point to discover why three critical skill areas—language, cognitive, and social—remain stagnant in adults with autism. While I’m not a scientist, I have had the opportunity to observe autism first-hand on a daily basis for more than twenty-two years, and I have some theories of my own about what may be occurring. When autism is first diagnosed in young children, professionals urge parents to seek early intervention at a seemingly frantic pace, emphasizing how critical early intervention is. After Alex was diagnosed, we enrolled him in special needs preschool, began speech, occupational, sensory integration, cranial, and visual therapies, and worked with a doctor on biomedical treatments. In addition, I did floor-time therapy with Alex to increase his interactive skills. Over time, these therapies are typically phased out when the child makes enough progress to “graduate” from the programs. As the child matures, more effort is placed upon independent living and adaptive skills so that he/she can function in life without needing parents or other adults to handle these tasks.

Another consideration for the lack of improvement in skills may be that at age 22, most students with autism no longer receive educational services. With limited community resources, many adults with autism may not be receiving the structured programs and training they need to continue developing their skills. Also, they may not be receiving therapies they did as children, such as speech, that may still assist their progress. If these adults are not getting the help they need in structured programs, they probably can’t develop the skills they need to be successful and to have satisfying lives. What can be done to prevent this stagnation of language, cognitive, and social skills so that adults with autism can find contentment in their lives? In time, the staggering number of children who have autism will become adults and will need support and services so that they can function in society and find fulfillment in life. I fear that communities are not preparing for that reality, and adults with autism and their families will suffer the consequences.

When Alex was 20, we placed him on a waiting list for a day program that serves adults with a variety of disabilities, hoping this would provide him with opportunities to continue developing his skills. Mostly, however, we wanted him to have the chance to interact with a variety of people so that he could increase his social skills. More than a year and a half later, we are still waiting and have accepted that we may be waiting a long time for that program. Fortunately, Alex qualifies for state disability benefits that provide services to help us improve his skills. As I explained in a previous blog entry, “Plan B,” we have been blessed with a wonderful behavioral therapist who works with us twice a week to address Alex’s anxiety, behavior, and social skills. Thanks to his excellent case manager, we were able to reconnect with our former music therapist, a young man who is a terrific role model for Alex. Three afternoons every week, we have these support services helping us improve Alex’s language, cognitive, and social skills as he interacts with these therapists and learns crucial life skills. With these interventions, Alex is getting better in many ways, and we are truly grateful for the progress he is making. Moreover, he is happy and content, which is a tremendous blessing.

On Friday, his behavior therapist planned an activity that focused upon life skills. She had Alex pick out a recipe he would like to make, and they made a grocery list of the items needed to make gluten-free and dairy-free banana raisin muffins. Then the three of us went shopping at the grocery store where Alex found the needed items and placed them in the grocery cart he pushed, and he paid the clerk when he was finished. After that, Alex and his therapist followed the recipe and made the muffins with her guidance. Although Alex and I have baked together over the years, this experience was novel because he was following the directions of someone other than Ed or me. Alex handled the activity very well, enjoyed himself, and felt a sense of accomplishment. In addition to activities like this, his therapist plans to take him to restaurants and have him order his own food; to prepare him they will practice with menus and social stories so that he will know what to say and do. While God has given us the resources and good people Alex needs to develop these skills, unfortunately, not all adults with autism have these opportunities.

As I re-read the article about adults and autism, I found one quote especially interesting: “What became increasingly obvious, the more we were looking at all the studies together, was that we just cannot make generalizations about adult outcomes in autism,” said Iliana Magiati, assistant professor of clinical psychology at the National University of Singapore. Perhaps the reason why generalizations cannot be made is because critical interventions can make a difference, as we have seen with Alex. As more children with autism become adults with autism, resources must be available so that they can continue to develop their skills. Only then will we have adults with autism who can lead independent and content lives, which is the hope of all parents whose children have autism.

“Getting wisdom is the wisest thing you can do! And whatever else you do, develop good judgment.” Proverbs 4:7