"In Thy Light"

“Thy Word is a lamp unto my feet and a light unto my path.”~“Thy Word” by Amy Grant and Michael W. Smith

Last week, a sudden storm knocked out the electricity to our home briefly, sending the three of us into darkness. Although Alex tends to be unnerved by thunderstorms, he has learned over the years that we will quickly assemble flashlights and candles so that he can see. After a recent power outage that lasted hours, we bought him a pair of “Super Bright Switches”: battery-operated LED lights that look like light switches and give off bright light, as advertised and recommended by my mom. As soon as the power flickered, I took a flashlight and ran and got his Super Bright Switch so that he could carry around light easily and feel secure. Alex seemed content to have the ability to flip a switch to gain light quickly, and fortunately, the electricity came back on shortly afterward.

In dealing with autism, we often find ourselves stumbling in the darkness, searching for a light that can easily be turned on with the flick of a switch. After dealing with Alex’s sudden and uncharacteristic food aversion for over a year, we found the proverbial “light at the end of the tunnel” when we began working with a speech therapist last month. Although I thought helping him overcome his issues with the tastes, textures, and temperatures of food would take months, his speech therapist felt confident Alex could conquer his anxiety about eating more quickly. She was right.

In our session last week, she declared that Alex had graduated from therapy with her and would no longer need speech therapy for food aversion. After only five sessions in less than two months, she had taught Alex how to enjoy food again. In that last session, he was able to tell her that he had tried more than a dozen varied foods in the two weeks since he had last seen her, and he liked almost all of them. Suddenly, he was suggesting foods he’d like to eat, something that we had not seen in more than a year. Another sign of a breakthrough was his telling us that he was hungry––a sharp contrast to his more recent behavior of protesting that he didn’t want to eat because he was already full.

Although we were delighted that Alex made such rapid progress in overcoming a problem that had plagued him for several months, we were also a bit sad to say goodbye to his therapist. However, she assured us that if Alex ever needs her, she will always be happy to help. In the brief time we worked with her, she had endeared herself to us through her patience, kindness, and enthusiasm. Most of all, she genuinely cared about Alex and celebrated each step of progress with us. When we couldn’t find a way, she enlightened us.

On Friday evening, we took Alex to see a Homecoming celebration fireworks display at Valparaiso University, where Ed teaches and I received my college degrees. Even though fireworks should cause sensory overload for Alex with the loud noises and flashing lights, going to the Homecoming fireworks is an annual event he eagerly anticipates. This year was no exception. Moreover, these fireworks seemed to be an appropriate way to celebrate all the progress Alex has made recently.

As the three of us watched the exploding multicolored lights in the sky, I thought of the motto of my alma mater: “In Luce Tua Videmus Lucem/In Thy Light We See Light.” Despite all the times we have trouble seeing the path for Alex, God has illuminated His purpose and shown us the way. Not only has He helped us find strategies and methods to help Alex, but He has also led us to other people whose expertise and support we needed to make Alex better. When we were in the dark, God provided the light so that we could see and have hope for the future.

While I thanked God for the progress Alex has made in overcoming his fear of storms and regaining his appetite and being willing to go places so that he can enjoy life, Alex was just mesmerized by the fireworks. With a smile on his face, he counted the flashes in the sky and proclaimed that he liked the fireworks “one hundred percent.” While his faith may be less analytic than mine, Alex’s faith is purer than mine. He trusts God implicitly, knowing that just beyond the darkness, the light will always shine brightly.

“For God, who said, ‘Let light shine out of darkness’ made His light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ.” 2 Corinthians 4:6

Looking for Links in Autism

As if dealing with autism were not difficult enough, most children with autism also have at least two other medical conditions. A recent article, “Some conditions tend to accompany autism in pairs,” written by Hannah Furfaro and published online on the Spectrum website on September 12, 2018, describes research regarding this phenomenon. [To read this article, please click here.] This article summarizes research published on July 24, 2018, in the journal Academic Pediatrics under the title “Identifying Associations among Co-occurring Medical Conditions in Children with Autism Spectrum Disorders.”

Under the leadership of neurologist Ann Neumeyer, the medical director at the Lurie Center for Autism at MassGen Hospital for Children in Boston, this study examined data from a network of autism clinics between 2010 and 2016. The research focused upon 3335 children with autism: 2114 who were seventeen months to five years old and 1221 who were six to seventeen years old.

For this study, researchers identified twelve medical conditions that commonly affect people with autism. These conditions included anxiety, ADHD (attention deficit hyperactivity disorder), developmental delay, and seizures. In addition, issues related to eating and digestion often found in autism, such as feeding difficulties, pica (eating nonfood substances), and constipation, were also included. Rounding out the list were various conditions: eczema, hypotonia (low muscle tone), disruptive behavior, sleep difficulties, and speech issues.

As they examined the data, researchers looked for conditions that were often found together and calculated the prevalence of these pairs in the two age groups of children with autism. In the group of children under six years old, the most commonly linked conditions were speech issues and developmental delay, occurring in 18.54% of the children. Next, 16.46% of the children had both speech issues and sleep difficulties. The third most common pair of conditions was speech issues and feeding difficulties (9.74%), followed by speech issues and constipation in 8.09% of the children. Closely following at 7.99% was the pair of sleep difficulties and developmental delay, then speech and hyponia at 7.28%, and finally, sleep difficulties and constipation, with 6.24% of children affected by both conditions.

In the group of children with autism who were six to seventeen years old, some of the same pairs of conditions occurred, but other new ones also arose in this data. The most commonly observed pair was sleep difficulties and ADHD seen in 11.22% of the older children. In approximately one tenth of those children, speech issues and sleep difficulties (10.89%) and speech issues and ADHD (10.65%) were paired. In addition, 8.68% of these children had speech issues with developmental delay. Also, these children suffered from constipation: 6.39% of the children with speech issues had constipation, and 5.65% of the children with sleep problems had constipation. Finally, 5.16% of the children had both speech issues and hypotonia.

Obviously, the common denominator in many of these paired conditions is speech issues, which occur in the vast majority of these pairings. Dr. Neumeyer notes that speech issues are linked with other conditions because speech difficulties are common in autism. She also notes that the link between some conditions proves more obvious. For example, children who have oral motor issues may likely have problems with speech and feeding. By examining the linked conditions, researchers hope to discover possible genetic origins and potential treatments for these conditions.

Clearly, the overall prevalence of speech issues highlights the importance of speech therapy for children with autism. However, finding a speech therapist is not always easy, especially with the increasing numbers of children with autism, which often means being on waiting lists before speech therapy can begin. Speech therapists in school districts are often overwhelmed by ridiculously large caseloads of children and cannot always provide the individual therapy time needed to help children with autism.

Another issue repeatedly found in this research is the problem of sleep difficulties. Many children with autism struggle with sleeping, which impacts their families, as well. To keep their children with autism and insomnia safe, many parents stay awake with their children all night. For some children with autism, the supplement melatonin offers a natural way to increase drowsiness, helping them fall asleep and stay asleep so that everyone in the home can get a good night’s sleep.

In addition, doctors need to find the cause of constipation in children with autism so that they don’t have to suffer needlessly. Children with speech issues may not be able to communicate abdominal distress associated with constipation, and abdominal pain may be responsible for sleep problems linked to constipation. Since many children with autism also have food allergies and digestive issues, perhaps identifying and addressing these conditions could prevent constipation and any related issues.

Most importantly, this research demonstrates the wide range of medical conditions associated with autism. Parents must advocate to make sure their children get the best medical care possible, and doctors must recognize that these problems go beyond the scope of autism and need to be addressed. After these common conditions found in autism are diagnosed, proper treatment must begin to help children overcome issues that affect their health and well-being. Awareness of the links between autism and various conditions is just the beginning; seeking the true connections and finding ways to make children with autism happier and healthier should be the ultimate goal.

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.” Matthew 7:7

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

Seeking Small Miracles

“Why, who makes much of a miracle? As to me I know of nothing else but miracles…”~ Walt Whitman

For over a year, we have been trying to help Alex regain his healthy and hearty appetite. Although many people with autism have issues with eating, we were blessed with a child who would happily devour nearly any food placed before him. After a nasty bout of thrush last summer made Alex’s mouth and throat sore and made food taste bad, he has had difficulty overcoming the loss of appetite, even months after medications eradicated the thrush.

For more than a year, his self-imposed diet consists almost exclusively of cool and smooth foods: applesauce, dairy-free yogurt, a few fruits, lemon pudding, Jello, and smoothies. We have tried various approaches to increase both the variety and volume of what Alex eats on a daily basis. However, we must always be careful that our encouragement to eat doesn’t become pressure to perform that may trigger anxiety.

After months of prayer and gently persuading Alex to try different foods, we decided to take him to a speech therapist his primary care doctor had recommended for food aversion. Immediately impressed by her understanding of why Alex’s appetite suddenly changed as well as by her warmth and kindness toward Alex and us, we felt hopeful that she could help him. Moreover, we were relieved to discover nothing was physically wrong with Alex’s ability to eat; he simply has sensory issues and anxiety about eating.

Last week, I found an excellent article on the Child Mind Institute website that explains food aversion clearly and offers helpful tips. [To read this article, please click here.] In “More Than Picky Eating,” Rachel Ehmke notes, “Kids with a serious aversion to many foods may need help with food habits and overcoming avoidance.” She goes on to say, “Their aversion goes beyond normal choosiness and into an area where parents find they need to call for backup.” Clearly, this reinforced our decision to seek the expertise of a speech therapist regarding Alex’s new aversion to food.

In the article, she explains potential reasons why children limit their diets, namely, anxiety issues and/or heightened senses of smell and taste. Specifically, she describes fears of trying new things, worries about choking, and issues with textures. With Alex, he seems to be more driven by sensory issues––taste, texture, and temperature. However, he also seems to have anxiety about the act of eating, and he is trying to deal with his fears by reading medical books. For him, knowledge is power. Of course, we have tried to reassure him, as well.

The article goes on to explain using exposure therapy, working with foods that have been avoided “in a carefully controlled, therapeutic way.” Children are encouraged to try new foods and rate them, eating foods that don’t make them gag, and allowing them time to get used to the taste of new foods through repeated exposure to them. The results of this approach, which usually takes 8-10 sessions, are encouraging: “…with treatment, picky eaters can make great strides.”

Although we have only met with Alex’s speech therapist three times, we have seen her use a similar approach with him. After noting the foods that he will eat, she has offered suggestions about foods he can try at home that are similar to the ones he is currently eating. For example, since he likes applesauce, she suggested that he try different flavors of applesauce, and he discovered that he also likes cinnamon-flavored and strawberry-flavored applesauce. This way, he is expanding his palate to accept new flavors with familiar textures and temperatures. In addition, since he likes orange juice, she recommended that he try Mandarin oranges, which have a similar flavor to his favorite beverage but a different texture. In his most recent session, she asked him to try warm apple pie filling, which is similar to applesauce in taste but offers a different texture and temperature.

Thankfully, Alex has been willing to follow her suggestions, and we have been able to expand his limited menu with some new fruits. However, he has definite ideas about things he refuses to eat, even angrily telling us in his last session that he didn’t want to eat the Honey Nut Cheerios we’d offered him. Despite Alex’s rare yelling outburst, his therapist assured us that she loves working with him and considers our family “a blessing” to her. Moreover, she reassured Alex by telling him most crunchy foods aren’t that nutritious anyway, so he doesn’t have to eat them. If we had any doubts, God was reminding us what a blessing he’d given us in Alex’s speech therapist.

In the month since beginning food aversion therapy, the progress has been slow, but we are grateful that Alex has been willing to try new foods. The other day, however, we were surprised when out of the blue, Alex requested chili dogs for dinner. Neither cold nor smooth, they didn’t fit his preferred diet, and the spiciness of the chili seemed out of the ordinary for him. Since Alex had not given me advance notice, I had to improvise and make him a hot dog with leftover taco meat. To my surprise he ate every bit and enjoyed it thoroughly.

Not wanting to get my hopes up, I dismissed this chili dog incident as a fluke. The next day, he again asked for chili dogs. Had my faith been stronger, I would have made chili in preparation for this new food request. Instead, I could only offer taco meat dogs on the spur of the moment. Again, Alex ate this second-rate chili dog happily. Still not quite believing this small miracle God had given, I was taken aback when Alex again asked for a chili dog the next day yet seemed satisfied with the substitute taco dog. Every day, I thanked God for this breakthrough and prayed that this was a sign we were making headway on Alex overcoming his food aversion.

Yesterday, I decided to test how strong Alex’s breakthrough was by suggesting that we take him to a hot dog stand and get him a real chili dog. Since we had not been to this restaurant in over a year, Alex was eager to go because it was “special.” After ordering his hot dog with no bun and chili on the side, I had doubts that he would eat the chili dog, especially away from home. However, God provided another small miracle as Alex devoured the chili dog and proclaimed he liked it “one hundred percent.” For most people, this simple act would be rather meaningless; for us, it was an answer to many daily prayers.

Even though we don’t know how long before or even if Alex will totally regain his varied appetite, we are encouraged by the amazing progress we have witnessed this week. God has provided us with a therapist who understands Alex’s needs and has offered us support and a good plan to help him overcome his food aversion. As we continue to seek daily blessings and pray for breakthroughs, we are grateful for all the progress Alex has made over the years. For today, Alex has requested chili and a baked potato from Wendy’s fast food restaurant for dinner. In the words of poet Walt Whitman, “What stranger miracles are there?”

“He does great things too marvelous to understand. He performs countless miracles.” Job 5:9

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