More Than Words

Language impairment, one of the defining characteristics of autism, also proves to be one of the most frustrating aspects for those who have autism, according to a well-written recent article. [To read this article, please click here.] In “Communication: An Important Autism Life Skill,” published online July 29, 2018, in Psychology Today, Chantal Sicile-Kira notes that while sensory issues challenge adults with autism most, communication difficulties run a close second. As the author of acclaimed books on autism, namely Autism Spectrum Disorder and Autism Life Skills, as well as the mother of an adult son with autism, Chantal Sicile-Kira has devoted her life to her son and to sharing what she has learned about autism.

As she explains, children with autism often have motor skill impairments affecting their necks and mouths that make physical production of speech quite difficult. Instead of using words to speak, they may resort to attention-seeking behaviors, such as screaming. Because these behaviors are considered socially inappropriate, especially in older children and adults, the author emphasizes the importance of teaching nonverbal children with autism alternative methods of communication, such as typing or pointing to letters. Indeed, her nonverbal son, Jeremy, has benefitted from learning alternative means to communicate and has even co-authored a book with his mother, A Full Life with Autism. Nonetheless, he admits, “The hardest part of autism is not being able to talk.”

Even for those with autism who can speak, the author notes, communication can be difficult. Specifically, she describes the “hidden curriculum”––social skills that are not specifically taught but learned by following others’ behavior. These include eye contact, speaking at an appropriate volume, and reading people’s body language. Even knowing how to respond appropriately is important, as she cites the example of a teen girl with autism whose peers found her rude because she didn’t know how to accept compliments. Clearly, teaching language to children with autism requires thinking outside the box.

While we are blessed that Alex can speak and express his thoughts and feelings, speech has always been one of his biggest struggles. In addition to providing speech therapy for him, we also used his strengths to help him overcome his weak areas. For example, his precocious reading skills enabled him to connect written words to objects and spoken words. Using Post-it notes, I labeled objects in the house so that he would connect the objects with their written and spoken names. In addition, we used his love of books to develop his ability to connect written and spoken language by reading aloud to him daily. His phenomenal ability to spell words correctly, even as a pre-schooler, proves quite beneficial because he can spell aloud words when we can’t understand what he is trying to tell us. To help him with this task when he was younger, we bought him a Franklin Spelling Ace handheld electronic dictionary that allowed him to type words on a screen that he could show us and communicate what he wanted to say. Certainly, the advancements in technology in the past two decades now allow children with autism access to smart phones and electronic tablets that can enhance their ability to communicate with others.

Even now in his mid-twenties, Alex is still developing his speech skills, expanding his vocabulary by reading the dictionary and learning social language by eavesdropping on conversations. Moreover, his behavioral therapist has done an excellent job of teaching him the “hidden curriculum” that is often overlooked. She has worked with him on how to give and accept compliments, how to ask appropriate questions, and how to develop reciprocal conversation by asking and answering questions and sharing ideas and opinions on a given topic. While we still have to cue him on these social language skills, he is making good progress and knows the value of not appearing rude. Clearly, her lessons on the value of eye contact have made an impression on Alex because lately he has been leaning down to my eye level (since he’s several inches taller than I am) when he wants to tell me something he finds interesting. Being able to share his thoughts and feelings obviously delights Alex, and we are delighted not only that he can use language to share ideas with us but also that he wants to engage us in conversation.

Yesterday, I ran across a video of Helen Keller on You Tube entitled, “Helen Keller Speaks Out.” After an illness that robbed her of her sight and hearing at a very young age, she was able to learn to communicate with others by using touch to finger spell and read lips. Because her dedicated teacher, Annie Sullivan, knew the importance of teaching her language, she used unconventional methods to meet Helen’s needs. Despite debilitating disabilities, Helen Keller became an author and a public speaker. Even though she inspired many with her great accomplishments, she admits, “It is not blindness or deafness that brings me my darkest hours. It is the acute disappointment in not being able to speak normally.” While she may have been disappointed in her speech, I was amazed how well she could speak in this video. She goes to explain her frustration, “Longingly I feel how much more good I may have done, if I had only acquired normal human speech. But out of this sorrowful experience I understand more clearly all human striving, thwarted ambitions, and infinite capacity of hope.” Perhaps she underestimated her ability to communicate and the impact her words and her life have made upon others. Nonetheless, she emphasizes the importance of giving people with disabilities a voice, whether through sign language, an interpreter, or modern technology to allow a nonverbal person to communicate.

In the examples of Jeremy Sicile-Kira and Helen Keller, we clearly see the need to find ways to help people with disabilities communicate with others. Even with those whose language skills are less impaired, like Alex, we need to teach all aspects of communication to help them interact positively with others. Teaching those who are differently abled requires creativity, patience, and tenacity. However, knowing that those special people have something valuable to say truly gives us that “infinite capacity of hope.”

“The lame will leap like a deer, and those who cannot speak will sing for joy! Springs will gush forth in the wilderness, and streams will water the wasteland.” Isaiah 35:6

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

Pet Pat Phrases

 

“You’re old enough to have a driver’s license!” Alex yelled at me last week. As usual, he reversed his pronouns—a common feature in the speech of people with autism––saying “you’re" when he actually meant “I’m.” What was unusual was that he was raising his voice to let me know he was upset; typically Alex is fairly easygoing and speaks softy. Clearly, he knew what he needed to do to get my attention. Because he has always struggled with speech, Alex has certain favorite pat phrases he uses to communicate beyond basic conversation. While these often repeated sayings may not have much meaning on the surface, we have learned that the words carry deeper intent.

For example, we know that Alex is always on the lookout for numerical values to quantify people and objects. When he discovers patterns, he is elated and happily announces his findings to us, such as, “Our phone number is a prime number!” Not content to make this point only once, he often repeats this discovery. In fact, every time we have to give our phone number, he reminds us that it is prime. Moreover, his enthusiasm never wanes, no matter how many times he reminds us of this mathematical fact. Because he is so happy with himself about this remark, we encourage him with praise, noting how clever he is to have figured out the connection.

Even better than getting praise for finding prime numbers is the noting of rare instances. Alex loves anything he perceives to be a rare occurrence, and he enthusiastically announces his discoveries to us. For instance, he gets excited if a house number has five digits and will say, “That’s very rare to have a five-digit address!” If he’s watching television and two consecutive commercials are the same, he’ll tell us with awe, “It’s extremely rare to have two of the same commercial in a row!” I’m not certain that these instances are as “rare” as Alex thinks they are, but his enthusiasm for noticing them and talking about them is contagious, and we can’t help but act equally excited when he tells us. Obviously, he finds great joy in instances he thinks are not ordinary, and he wants to share them with others.

Once or twice a day, he treats us with the following announcement: “It’s rare for a person to have a two-digit weight!” What he’s trying to say in his inimitable way is that most adults weigh at least one hundred pounds. In addition, he knows that it’s not polite to discuss people’s weights, so he’s trying to avoid being rude by being so general. However, we know the real story behind this daily comment. He has seen a commercial with petite NASCAR driver Danica Patrick, whom Alex knows weighs less than one hundred pounds because he did a Google search to find out how much she weighs. I suppose he thinks this is a polite way to discuss her weight, and probably many women would be as happy to weigh two digits as Alex is to talk about it.

In addition to noting what famous people weigh, Alex also pays close attention to their voices. If he hears someone singing with a raspy voice, he often asks, “Is that Bob Dylan?” If he hears a song by Elvis Presley or Johnny Cash, Alex makes the offbeat comment, “Elvis had a deep voice when he died” or “Johnny Cash had a deep voice when he died.” Sometimes to make his point, Alex will share these statements by saying them in a deep voice, which makes them even creepier. His fascination with deep voices also shows when he hears kids on television whom he thinks have deeper voices than they should at their ages, and he will often comment, “It’s rare for kids to have deep voices.”  On the other hand, he also notes voices of older people and remarks if they have “an old man’s voice” or “an old lady’s voice.” Since we have told him not to say those comments in front of older people, he confines his judgments to only those he hears on television. However, he has decided that it must be complimentary if elderly people don’t show their ages in their voices, so Alex enthusiastically comments, “He doesn’t have an old man’s voice. That’s very rare!”

As Alex listens to people’s voices, he often makes comparisons evident in questions he asks. For instance, if I speak in a higher pitch, he thinks I’m my sister and will ask, “Is that Aunt Tammy?” If I speak very sweetly to him, he thinks I’m my mom and will ask, “Is that Nanny?” When I tell him it’s just me, he frankly seems a little disappointed. Because my dad and brother sound quite a bit alike in the way they speak, Alex is often confused about who is who, based on their voices. He often asks, “Is Uncle Freddy Grandpa?” While he knows they are two different people, his question clearly shows that their voices confuse him about who is who. The most amusing comparison he makes is when he sees a local commercial for an attorney whose voice reminds him of my brother-in-law, and he asks, “Is Peter Francis Geraci Uncle John?”

One thing we have learned about the repeated phrases and questions Alex uses is that they often reveal hidden meanings. For example, he frequently asks questions about the weather. Even though he has a strong interest in meteorology, these questions go beyond discussing a favorite topic, we have learned. When Alex asks if it’s windy or rainy, he’s concerned about the noise that the wind or rain will make or perhaps they may develop into a stronger storm, like a tornado. Before he takes a bath, he nearly always asks if there are thunderstorms––even on sunny days––because he knows it’s not safe to bathe during a storm, and he fears that his beloved bath could be delayed by the weather.

As Alex has gotten older and his language his improved somewhat, he has learned that he can convey not only his observations but also his thoughts and feelings. While these phrases may be not as clear as they could be, we can usually figure out his intended meaning. When he asks if he can do something, he usually means that he wants to do that activity. On the other hand, if he adds “or not” to the question, he doesn’t really want to do that activity, but he’s testing to see if we would allow him to do so. We know this because if we ask him if he wants to do that, he usually tells us no.

In his cry of frustration the other day about not being able to drive, we knew what was wrong because we have heard him complain about this before. He wanted to go someplace, and we told him we would take him later. Knowing that most people his age can drive bothers him because he realizes that he lacks the independence he should have. As parents, we understand his upset because we, too, hate that autism has prevented him from doing typical things. We wish we could hand him the car keys, tell him to be careful, and send him out into the world to do what he wants. However, we are grateful that unlike many adults with autism, Alex can speak and share what he’s thinking. As we pray for his continued progress, we hope that someday Alex might be able to say clearly whatever he wants to say and to drive wherever he wants to go.

“Look!” he said. “The people are united, and they all speak the same language. After this, nothing they set out to do will be impossible for them!” Genesis 11:6

Chatting with Alex

 

When Alex was little and had very limited language, we prayed for the day when we could carry on a conversation with him, and we worked hard on his speech skills, hoping to make that goal a reality. The other day, his behavioral therapist commented that she has noticed significant improvement in Alex’s speech and specifically mentioned that his sentences have become much longer as these skills have developed. What is also notable is that he wants to interact with us and tell us what he has thought or observed; often he wants to tell us something he finds interesting. Sometimes, he’ll come running up or down the stairs to find us and eagerly share something that’s on his mind.

Since speech still does not come easily for Alex, he often relies upon familiar favorite topics, especially those related to numbers, such as dates, ages, prices, and statistics. He also likes the predictable, so our conversations often resemble a scripted comedy routine, much like the “Who’s on First” bit by Abbott and Costello. While I suspect that my role is the straight man, Alex, the funny guy, seems to find our banter quite amusing and usually walks away afterward smiling and chuckling. Even though we might have essentially done the same script one hundred times or more, creating a sense of déjà vu, he still finds the conversation funny every time.

Usually the catalyst for our chats lies in the appearance of a number that has significance to Alex. For example, when the thermometer registers sixty-three degrees, Alex lights up and engages me in a routine discussion about the heights of his female relatives.

Alex: “Sixty-three! That’s like Mommy’s, Aunt Tammy’s, Aunt Babs’, and Aunt Pat’s height in inches!”

Me: “That’s true!”

Alex: “Is Nanny 5’1 ½” or exactly five feet and 15/16” tall?”

Me: “What do you think?”

Alex: “Exactly 15/16.”


Another trigger number for Alex is twelve, which sends him on a nostalgic journey to childhood along with some musing about another interest, the sound of people’s voices. He refers to higher pitched voices, such as those of children and some women, as “little voices,” which he finds pleasant.

Alex: “Twelve! [Referring to himself in third person] Alex had a little voice when he was twelve. That’s like the number of hours in a half day.”

Me: “That’s like the number of eggs in a dozen.”

Alex: [Cousin] “Hannah had a little voice until she was eleven. Why does Mommy say she was ten?”

Me: “I like to round numbers.” Alex finds my mathematical carelessness amusing.

Dates hold a special place in Alex’s heart because he loves calendars and has a gift for memorizing special dates, such as birthdays. When he hears the mention of dates from the past on the news or on Jeopardy, he immediately associates the year with something he remembers fondly.

Alex: “2000! That was the first year that began with a two.”

Me: “That’s true.”

Alex: “Gas prices were $1.04 in 2000.”

Me: [Teasing him]“Approximately or exactly?”

Alex: “Exactly!”

While numbers usually move him to begin a chat, sometimes a word that he associates with a number can also motivate him to engage me in conversation. He has a fascination with Phoenix, Arizona, probably because its climate is so different from ours. When he hears it mentioned on television, he and I go into the following routine. (Since today’s NASCAR race takes place in Phoenix, I anticipate that he and I will repeat this discussion at least a dozen times this afternoon.)

Alex: “Phoenix! It gets hot in Phoenix.”

Me: “Yes, it does get hot in Phoenix.”

Alex: “How hot?”

Me: “Around 100 degrees in the summertime.”

Alex: “One hundred degrees or 112 exactly?”

Me: “Exactly 112 degrees.” Satisfied that he has trained me in data precision, he will smile.

Yesterday evening, we went to one of our favorite family restaurants, where the hostess, Kayla, and Alex are on a first-name basis because she always engages him in friendly conversation. Even though he didn’t have a script for their chat, he managed to answer her questions and make his feelings clear.

Kayla: “Alex, would you give your meal five stars tonight?”

He thinks about this seriously.

Alex: “Four point five.”

Kayla: “Four point five?”

Alex: [Trying to make her feel better] “That’s ninety percent.”

Kayla: “What could make it five stars next time?”

Alex: “Serve shrimp.”

Kayla: “If I give you a whole plate of shrimp next time, what will you rate it?”

Alex: “Five stars.”

Although words still do not come easily to Alex, we are thankful for the progress that he has made through the years and for the confidence he is developing in his ability to express himself, even in unscripted situations. As much time as he spends thinking, reading, and mulling over details, we believe that he probably has a lot more to say. In the meantime, we enjoy our conversations with him, even those we have had numerous times with him, knowing how much he enjoys talking with us and other people. As God continues to heal Alex, we wait with patient anticipation, knowing that we will be rewarded when Alex’s voice can freely speak the words he wants to say.

“I love the Lord because He hears my voice and my prayer for mercy.” Psalm 116:1

Make a Joyful Noise

 

As I have mentioned in previous blog entries, Alex usually speaks quietly, often making understanding what he has to say difficult. In fact, one of the areas his therapists and we have worked with him to improve is making his volume audible so that he can be heard. As they have pointed out to us, in order to advocate for himself, Alex will have to speak up and make sure he is heard. Even though we are willing to ask him to repeat what he has said until we understand what he wants to tell us, other people may not be as patient with him. For this reason, we have worked with him on his volume and had him practice asking and answering questions he would need in social situations, such as ordering his food in a restaurant, something he does regularly on our Fun Friday recreational therapy outings.

I don’t know whether he speaks quietly because his hearing is so acute that his voice sounds louder to him than it does to other people, or perhaps he feels unsure about speaking aloud because he knows speech is one of his weaknesses. Of course, like any skill, he has needed to practice to improve, and we have been pleased with the progress we have seen. Recently, his music therapist commented that Alex rarely has to repeat something he has said because he is speaking with an appropriate volume most of the time now.

A couple of weeks ago, Alex came downstairs and enthusiastically told us how low gas prices were and specifically named the price at a local gas station. One of his interests is following oil prices every day and observing how they affect gasoline prices. He went on to tell us that this was the lowest price in many years and cited the specific year in the past when gasoline prices were that cheap. Because Alex was so excited about these low gas prices, Ed suggested that we go fill my car’s gas tank at the station Alex had found online, even though it was 9:30 at night. Alex was even more excited that we were actually going to the gas station, and he was delighted to be going along for what he perceived to be a grand adventure. Essentially, he was being rewarded for speaking up and sharing his knowledge with us.

Yesterday afternoon, I could hear men’s voices talking upstairs, and I realized that Alex and Ed were having a conversation. Even through the closed door of Alex’s room, I could hear their discussion about the upcoming Valparaiso University men’s basketball game that evening. In the past, I would have been able to hear Ed’s voice but not Alex’s, and it was nice to be able to hear him matching Ed’s normal conversational volume. As I briefly eavesdropped, I was happy to hear them talk about a shared interest, something we once wondered if Alex would ever be able to do.

In addition to speaking up more, Alex has also been singing in a louder voice lately. One of the many benefits of music therapy is that Alex has learned to sing along to songs he enjoys. When he first started music therapy, he would just listen to the songs or maybe play a percussion instrument or accompany on keyboard, playing all the wrong notes. With time, he gradually began singing along, but he would barely sing, so that he appeared to be lip syncing. Now, as we watch American Idol together every week or listen to music on the cable Music Choice channels or listen to the radio in the car, I often hear Alex’s voice, sweet but off key, like mine, singing along to the lyrics.  As I listen to him sing, I wonder if singing has helped his speech because he can recite words that are familiar while gaining practice with his articulation and volume. Nonetheless, we just like listening to him sing because it clearly brings him joy.

Last night at the university basketball game, Alex thoroughly enjoyed himself, even though our team lost. After going to several games this season, he knows the routines of when to stand, when to sit, when to clap, and when to cheer. When the first notes of the VU fight song play, he immediately stands with the rest of the crowd. When the cheerleaders run to the floor with signs, he eagerly anticipates the chant of “HEY, VU!” followed by, “V-A-L-P-A-R-A-I-S-O, LET’S GO, VALPO, LET'S GO!” In addition, he recognizes familiar songs the pep band plays, and he smiles and gently rocks when they play his favorite tunes.

One of his favorite songs they play is “Livin’ on a Prayer” by Bon Jovi, one of his favorite groups, whom he used to call “Bon Jo-bee” when he was younger. I found it interesting that the student section was singing the chorus to this song loudly, even though none of them were even born when this song was popular in the 1980’s. Sometimes Alex sings along with them; mostly he smiles as he listens. To encourage him to sing along, I sing the words in his ear, and I realize that these words have meaning for us, a promise we will get past the obstacles autism has presented our family:

“Whoa, we’re halfway there; whoa, livin’ on a prayer.

Take my hand; we’ll make it, I swear. Whoa, livin’ on a prayer.”

When Alex was younger, we prayed for the time when we would be able to have conversations with him, and we worked hard to get him to speak more, wanting to know what he would have to say. While he still struggles with speech, he can now give us some insights into his thoughts, sharing his enthusiasm about gasoline prices, basketball, or a familiar tune. I’m certain that with more time and more practice, he will have more to say. Indeed, we are “halfway there,” and for that, we are truly grateful. Alex, “take my hand; we’ll make it, I swear. Whoa, livin’ on a prayer.”

“Make a joyful noise unto the Lord, all the earth; make a loud noise, and rejoice, and sing praise.” Psalm 98:4

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

Alex the Low Talker

For some reason, Alex has developed the habit of speaking so softly we can barely hear him at times. Since spoken language has always been quite difficult for him, I suspect that he is self-conscious about the way he talks, which may be why he speaks in such a quiet voice. His behavioral therapist has been working with him the past few months, encouraging Alex to “turn up the volume” so that he can be heard easily. While his quiet voice seems preferable to one that is too loud, trying to hear what he’s saying can be a challenge. His therapist has impressed upon us the importance of getting him to speak up so that he can convey his needs, wants, and ideas to other people who may not be as patient as Ed and I are about trying to figure out what he’s saying. In many ways, Alex reminds me of a character from the television comedy Seinfeld, a woman who spoke too softly and whom they nicknamed “the low talker.”  Since the other characters on the show couldn’t understand what she was saying, they simply nodded and smiled, which led to Jerry unwittingly agreeing to wear a “puffy shirt” that she had designed. The other day, Alex said something to me that I couldn’t hear, and I just agreed with him to appease him. When my mom asked me what he had said, I told her I wasn’t sure, but I thought I might have agreed to wear a puffy shirt the first day of school. [For a clip from this Seinfeld episode, click here.]

While having closed captioning beneath Alex as he speaks would be very helpful, we must instead tell him to repeat what he has said in a louder voice and try to figure out what he’s trying to tell us. The results of these efforts are a cross between moderately frustrating and very amusing. Ed and I have developed a sequence of steps to decipher Alex’s code. Sometimes we must go through the entire process, and sometimes we’re able to figure out what he’s saying on the first try. Thankfully, Alex remains remarkably patient as we try to understand him, never getting upset that we don’t know what he’s saying and often finding our attempts hysterically funny. We frequently see him in the back seat of the car, the setting for most verbal misunderstandings, laughing at us because our guesses at what he’s said are apparently way off base. Nonetheless, we keep trying to keep the lines of communication open with him, leading to a process that could be a new game show: Guess What Alex Just Said.

1. First, we ask Alex to repeat what he said a little more loudly. Although he usually complies with this request to repeat, he often repeats in the same low volume as the first time. Sometimes we can figure out what he’s saying by reading him lips.

2. Next, we madly search for context clues. Is he holding something that would help us figure out what he’s saying—a magazine or book, for example? Did he see something out the car window that caught his attention? This is the part of the process where Ed and I usually work as a team, putting our ideas together cooperatively to solve the puzzle.

3. Prior experience can sometimes help us understand what Alex is saying. For instance, he finds the recent closing of a local appliance store interesting, so whenever we pass that store, he’ll jokingly tell us that he wants to go to Sun Appliance. This has become so routine that as soon as the sign for the store comes into view when we’re driving, we’re ready with a response for him.

4. To make hearing Alex easier, we remove all sources of background noise as much as possible. Ed and I have become adept at quickly turning off the car radio and air conditioner to remove any noise that competes with Alex’s quiet voice. Sometimes we also tell him to wait until we get to the next stop sign or stop light so that we can hear him over the car’s motor. Instead of simply raising his voice so that he can be heard, Alex prefers to wait until the next intersection where he won’t have to compete with the running motor.

5. Besides his issues of talking quietly, Alex has articulation problems that make understanding him difficult at times, even when he does speak in a normal tone of voice. Fortunately, he can spell words aloud easily, and we often ask him to “Spell it” so that we can decipher what he’s saying. This is a good strategy because he likes to spell words aloud, and Ed and I have become so good at this game we can frequently figure out the key word halfway into the spelling.

6.  Often, Ed and I just start guessing, using what clues we have at hand and what we think we are hearing him say. This often leads to funny misunderstandings that Alex finds hysterical. The other day in the car, he was trying to tell us what he wanted for dinner, but I thought he was talking about people instead. I guessed Grandpa and game show host Bob Barker, neither of which were anywhere near what he was saying. When we finally figured out what he was saying, we then understood why he found my guesses so amusing. Many times, as with the spelling strategy, Ed and I work together in our guessing, and between the two of us, we can come up with what Alex is saying.

Although trying to figure out what Alex is saying in his quiet voice requires some patience, understanding, and even creativity, we are thankful that he not only wants to communicate with us verbally, but that he also is patient with us as we try to understand him. As much as he seems to find our failed attempts funny, I even wonder if he deliberately speaks softly just to see what we will do. Considering that nearly half of all people with autism are essentially nonverbal, we realize what a blessing it is to have a child who can speak. As we continue working with him to raise his voice so that he can be heard, all three of us find humor in the Guess What Alex Just Said game where we all win when we finally understand what he wanted us to know.

“They longed for me to speak as people long for rain. They drank my words like a refreshing spring rain.” Job 29:33

Interviewing Alex

Last week, we met with Alex’s behavioral therapist for the first time. As I mentioned in my last blog entry, the state disability funding will pay for a behavioral therapist to work with Alex on not only improving his impulse control but also improving his self-help and life skills. In our first meeting, Alex’s therapist, Melissa, interacted well with him as she asked him a variety of questions while trying to learn more about him. In fact, she must have made a favorable impression upon him because the next morning, Alex asked me, “When is Melissa coming back?” That he looked forward to seeing her again and remembered her name struck me as a positive sign.

To get to know Alex better, Melissa launched into questions that we have answered many times with various people from different agencies during this summer odyssey to obtain disability services for Alex. In my blog entry, “Coming Home,” I described how this interviewing process reminded me of setting up a dating profile for Alex. Now that we have answered questions about Alex’s interests and personality repeatedly, I almost wish I had set up an online dating account so those who want to know more about him could simply pull up his profile.

Because Alex’s verbal skills are weak, Ed and I often find ourselves answering questions for him. He is generally good at answering “Yes/No” types of questions, but if he has to elaborate, he relies upon us to give the essay types of answers. Although we will usually give him a chance to try and respond to questions, we will jump in to help him when he doesn’t seem to have the words to express what he wants to say. After living with him for more than twenty years, we know what kinds of things he likes to do, and we are happy to answer for him. However, I often wonder what other people think when we speak for Alex, especially when they take copious notes during these interview sessions.

To begin getting to know Alex, Melissa asked the typical interview question about what Alex likes to do. Sitting next to Alex, I tapped him on the knee to get his attention and prompt him to respond. When he didn’t say anything, Ed said Alex’s name so that he would know it was his turn to talk and then rephrased the question. Since Alex didn’t respond to either of those cues, I asked him what kinds of television shows he liked to watch. Finally, we had his interest, and he said that he likes game shows. Melissa followed up this question by asking him what his favorites games shows are, and he responded with "The Price Is Right and Wheel of Fortune." Of course, his articulation issues and tendency to talk softly makes him somewhat difficult to understand, so I did what I often do when Alex speaks—I repeated his answer for her to hear.

Throughout the questioning process, we followed our usual procedure of trying to get Alex to focus, helping him understand the questions by rephrasing them, prompting him to answer, followed by repeating his answers or simply answering for him. As Melissa continued asking questions to find out more about Alex, I began wondering what kinds of things she was jotting in her notebook. Paranoia isn’t one of my finer traits, and I often wonder if other people judge Ed and me for the way we have parented Alex from our decision to home school him to our decision to hospitalize him and have him medicated for his extreme anxiety. While we have always striven to do what we felt was best for Alex and believed that our prayerfully considered decisions were guided by God, we know that not everyone would have made the same choices we have.  In my curiosity about Melissa’s impressions, I imagined the things she might have written in her notes.

Parents talk so much the poor kid never gets a word in edgewise.

Parents claim to understand what he’s muttering; wonder if they’re just making up answers for him.

He reminds me of the “low talker” on an old episode of Seinfeld [Watch an excerpt from this episode by clicking here.]—worried that somebody may be agreeing to wear a puffy pirate shirt if we’re not careful.

This would be a pretty good ventriloquist act if the parents’ lips didn’t move so much.

While I doubt any of these ideas were running through Melissa’s head, we always wonder what kind of first impression Alex makes upon people. We hope that given a little time to feel comfortable with her, Alex will charm her with his sweet nature and clever sense of humor. In the meantime, Ed and I will happily continue one of our most important roles as Alex’s parents—his interpreters who help him make sense of language and help others understand that he does have something important to say.

“I love the Lord because He hears my voice and my prayer for mercy.” Psalm 116:1

Waiting

This week, Alex continued his hospitalization in the Behavioral Medicine Unit of St. Anthony Hospital. After two weeks of daily meltdowns, blood tests were run on Monday to check the levels of medication in his system as well as to make sure they were not adversely affecting his liver and kidney function. Fortunately, the various medicines intended to calm his anxiety and curb his impulsive and aggressive behavior show no signs of impacting his liver and kidneys negatively, as those results came back as normal. However, the tests revealed that he is metabolizing the drugs too rapidly so that they do not remain at the needed therapeutic levels to stabilize his mood and behavior. Considering that he eats large amounts of food daily while remaining thin, this discovery of a rapid metabolism did not surprise us. To address this issue, the nurse practitioner overseeing his medications increased the dosages this week. As with each change that has been made over the past couple of months, we always hope this will be the right combination and levels of medications Alex needs to make him better. Of course, we also know that time is needed to see the results of these changes.

One change the staff has noted this week is that Alex has become increasingly verbal. For the past several months, we had noticed regression in his language skills, as he reverted to speaking primarily in one or two words. Moreover, he usually needed prompting to speak at all, and unless he was agitated and yelling nonsense, he spoke in a whisper-level volume most of the time. This week, he has apparently been initiating questions as to when meals will be served and when Ed and I will be arriving for our daily visits. Considering that Alex has always been very time-oriented, these questions reflect his need to know when things will happen.  What has been unusual, though, is that Alex finally seems to have mastered using the correct point of view with pronouns, specifically not mixing up  you with I and me, which has confused him throughout his life. Instead of saying, “You want a shower,” when he means himself, he has been telling the staff, “I want a shower.” I don’t know what has cleared up this language problem, but this sudden understanding marks a huge step for his speech skills.

In addition, he is using language in ways that amuses the staff. One of my favorite psych techs, Michelle, who is wonderfully sweet and supportive, finds Alex entertaining and has been pleased that he’s finally talking to her. She told me that he was asking for cookies the other day, and she reminded him that he can’t eat cookies because they have wheat and milk in them, which he can’t have on his restricted diet. He agreed yet pleaded with her, “But I like cookies!” Another day as she was leaving, she said goodbye to Alex and let him know she’d see him the next day. He responded by telling her that he wouldn’t see her. When she asked him why, he cryptically said, “It’s a surprise,” which she thought was funny. Later this week, he was talking with his caseworker, Katie, who was going over a schedule with him apparently in a no-nonsense way. When she was done, Alex commented, “Katie means business!” Since we’ve always thought that Alex’s limited language has hindered his social skills, his willingness to ask for what he wants and make comments about what he notices marks improvement in his socialization as well as his speech.

To help Alex improve his self-care skills and make decisions regarding his free time, Katie has developed a program in which Alex makes choices about activities and receives rewards for good behaviors.  He can choose various activities he likes, including doing math worksheets, surfing the Internet on the computer, watching television, etc. However, he must also complete grooming tasks, such as showering, combing his hair, and brushing his teeth. Also, they are trying to teach him basic tasks, such as changing the sheets on his bed. Using charts and stickers, Alex can monitor his progress as he works toward various rewards. His ultimate reward is his favorite treat, homemade gluten-free and dairy-free cake that she asked me to bring from home. Although I would have been willing to bring various baked goods that he can eat on his diet, the unit is very strict about not allowing food brought onto the floor. Once Katie had secured permission to allow home-baked cake as a reward for Alex, I was able to bring it to him yesterday, and he happily devoured it. We are all hopeful that having cake as a reward will help stop him from engaging in any negative behaviors that he can control.

Essentially, at this point we are waiting for his behavior to stabilize as well as for the state bureau of developmental delays to approve our request for residential services. Since I’m not good at waiting, this has been a test of my patience as well as my faith. Thankfully, we know that Alex is receiving excellent care in a setting where his behavior can be monitored closely and addressed appropriately. We are also grateful for the continued support of family and friends whose encouragement and prayers remind us that God has a good plan for our lives; we simply need to wait, trust, and hope.

“Yet those who wait for the Lord will gain new strength; they will mount up with wings like eagles. They will run and not get tired. They will walk and not become weary.” Isaiah 40:31

Needs

When Alex was in special education preschool, some of the goals included in his IEP focused upon expressive language, which was a real area of weakness for him then and one he continues to struggle with even today. At that time, the suggestion was for him to work on statements that began with “I want” or “I need.” Since Alex has always confused first and second person pronouns, mixing up I and you, simply starting these sentences was tough for him. He would avoid the pronouns completely by saying something like, “Want cookie,” reminiscent of Sesame Street’s Cookie Monster. Sometimes he would drop the verb, as well, and just tell us, “Cookie.” We found him especially endearing when he would ask for a cookie instead of demanding one, which was more typical since he was docile and sweet. To do this, he would tilt his head, smile, and ask, “Cookie?”

Later, as he gained more confidence in his speech, he would more often ask for things by saying, “How ‘bout,” as in “How ‘bout some juice?” or “How ‘bout go to Wal-Mart?” Similarly, he improved his ability to let his needs be known by telling us things such as, “Need a haircut” or “Need a Band-Aid.” When he was younger, he thought the way to fix anything that didn't work was to put a new battery in it. Perhaps because he played with so many electronic toys and had seen them rev back to life with new batteries, Alex believed that somehow batteries were a magic cure. I remember once that he had dropped some toy of his and was upset that it no longer worked. I kept trying to explain to him that it was broken, but he kept earnestly insisting, “Needs new batteries!” If only putting in new batteries could solve every problem so easily, life would be much simpler.

The other night, Alex came running frantically into the family room, where Ed and I were watching television. Clearly upset and suffering from an anxiety attack, he blurted something he’s never said before: “I need an Ativan!’ Alex’s doctor has prescribed a low dose of the sedative Ativan to help ease his anxiety attacks, but we only give it to him when he’s very agitated. In fact, we don’t even tell him that we’re giving him Ativan because that usually makes him more upset, realizing that he needs to be sedated. Instead, we’ve been telling him lately that we’re giving him a vitamin to make him feel better. While we probably shouldn’t deceive him, we know that telling him the truth would upset him more, and we’re less likely to get our fingers bitten when we place the pill in his mouth. It’s a win-win situation as far as we’re concerned. Therefore, we found it surprising that he requested his anxiety medication specifically. When we asked him why he needed it, he explained that he was upset about Monopoly Junior [his current obsession that sends him into anxiety attacks]. Seeing that his hands were shaking from excess adrenaline, we agreed with his statement of need and gave him an Ativan pill, which calmed his nerves within a few minutes. To be honest, I miss those days when juice, cookies, Band-Aids, or batteries solved all of Alex’s problems. Although I wish Alex didn’t suffer anxiety attacks, I’m thankful that he not only has become so in tune with his emotions, but also that he can express himself to explain what’s wrong and what he needs to solve the problem. We’re just hoping that he will someday soon say, “I need to stop thinking about Monopoly Junior.” Now that would be something we want to hear.

“I will answer them before they even call to me. While they are still talking about their needs, I will go ahead and answer their prayers.” Isaiah 65:24

Words

A couple of weeks ago, I described in my blog post “Farewell, Double!” how Alex seems to be recovering from the effects of allergies that have been bothering him lately. Thankfully, he has overcome the fatigue that was annoying him. In fact, he has returned to his old self with a couple of notable exceptions. First, his anxiety attacks have been popping up with less warning than usual. In the past, Ed and I knew Alex was agitated because we could foresee triggers and note behaviors that signaled he was upset. Lately, he seems to go “from zero to sixty” without any obvious provocation (e.g. the cable is out, his computer isn’t working, etc.), and he hasn’t been muttering (as I explained in the entry “Flow Chart”) to signal that his volcano is ready to erupt, allowing Ed and me to run figuratively to higher ground, or at least to put away any potential projectiles. These anxiety attacks, less predictable than usual, have kept us on our toes all summer, but fortunately, they have been less aggressive than those in the past. Most of the time, we have been able to console him through talking about his concerns, which brings up the second change we’ve noticed this summer.

Although Alex has always been rather reticent to talk, this summer he has definitely been a man of few words. One of the primary manifestations of autism in Alex has been his difficulty with expressive language. While his receptive language, or ability to understand what he hears and reads, is quite good, he has always had trouble generating speech and written words, despite years of speech therapy and our constant work with him. Along with his difficulty in trying to talk, Alex is intelligent and self-conscious, which makes him realize that he doesn’t speak as clearly as he would like. Through the years, Ed and I have tried to help him with this issue, alternately speaking for him when he’s out in public so that he won’t be embarrassed, or fighting the urge to finish his sentences for him when he’s at home and has no need to feel uncomfortable that he can’t always find the words he wants to say. Over the years, through time and practice, Alex’s speech has improved so that he can express himself through brief statements, and he has developed a surprisingly strong vocabulary, probably from his extensive reading and from conversing with his two English teacher parents. This summer, though, Alex has reverted to not volunteering information verbally and pretty much confining his answers to responses of “Yes” or “No.” In fact, sometimes, he doesn’t even answer those questions and will respond with gestures or facial expressions instead to indicate what he wants to convey. Needless to say, this regression of language skills has been worrisome and frustrating to Ed and me because it feels as though Alex has built a wall between himself and the rest of the world by refusing—and I do believe this is a conscious choice on his part—to talk. Moreover, as I reminded him the other day, we spent a great deal of time and money on speech therapy, which we’re not putting to good use when he won’t speak.

An added twist in Alex’s recent silence lies in his sudden bursts of eloquence during anxiety attacks. When Alex is agitated, he expresses himself quite clearly verbally, letting us know what the source of his anger/frustration/concern is. He uses precise adverbs such as, “approximately,” “actually,” and “exactly” to tell us about incidents from the past he remembers that bother him. While most of his complaints have to do with never wanting to use his typewriter, graphing calculator, or the computer game Monopoly Junior (all of which were previous obsessive activities he engaged in when he was younger), he also discusses abstract concepts, such as the passing of time and infinity. Despite his difficulties in using first and second person pronouns correctly, when Alex is in ranting mode, he never refers to himself as “you” or “Alex,” as he often does; instead he correctly uses “I” and “me” to express his feelings. While he usually speaks in words, phrases, or short sentences, during these verbal meltdowns, Alex seems to construct longer compound and complex sentences effortlessly. For example, the other day he expressed his frustration by telling us, “When I was 14 and 15 years old, it seemed like 30 years.” Ed and I questioned him a little further to see what was behind his mathematical analysis, and he explained, “Those years were boring; each one was like seven years.” I guess he was trying to deal with the idea of how time seems to drag when life isn’t interesting. Ed, who is more mathematical than I am, figured out that by adding Alex’s proposed seven years of boredom together, he came up with 14 years and then added that to age 16, which was apparently a less boring year in Alex’s eyes, which gave a total of 30. Ed ran this theory past Alex, who confirmed that was exactly what he meant by his cryptic comment. Another interesting observation I’ve noted during these word oases in the middle of Alex’s word desert is that Alex’s eye contact is significantly improved when he’s talking with us. Not only will he look at Ed and me when he’s telling us his worries, but he will also look us right in the eyes when we talk with him. These odd conversations ironically mark the most interactive and social behavior Alex has ever shown. As Alex talks with us during these times, we watch his anxiety gradually fade; by expressing his concerns and knowing that we care, Alex can address these fears head-on and regain his composure. While we miss the everyday conversations about the weather and game shows and what foods he likes to eat, I have hope that Alex will soon regain his desire to talk with us more often and suspect that his verbal outbursts indicate a progress in his development. We’ll just look forward to conversations that begin in delight instead of aggravation so that we can learn more about how Alex thinks because I suspect there’s a lot more on his mind that he has to share with us.

“For my words are wise, and my thoughts are filled with insight.” Psalm 49:3