The Comfort in Letting God Lead

Recently, I ran into an acquaintance, another autism mom I hadn’t seen for a while. Our sons are about the same age, and she has remarked that Alex reminds her quite a bit of her own son, whom I’ve never met.  When I asked her how her son was doing, a look of sorrow came over her face as she explained that he is very ill. Imagining how I would feel if Alex were in the same situation, I expressed my genuine concern and told her how sorry I was to hear he is so sick. Then, she candidly admitted, “I don’t know what God is thinking.”

Unsure of the right words to say to her, I could only earnestly respond, “I don’t know, either.” Nothing I could say would minimize her worry or fears, yet I hoped that she found some comfort in being able to say what she was feeling to another mother who could understand all the struggles she has faced throughout her son’s life. Moreover, while she doesn’t understand God’s plan now, she knows He has one. As I have been praying for her and her son to have peace as they wait on the Lord, I have been thinking about how we can comfort those in need, especially since I know others I care about are also currently carrying heavy burdens.

In Chapter 9 of his inspirational book, Aching Joy, pastor and autism dad Jason Hague describes how well-meaning friends sometimes offer platitudes instead of the true comfort we really need. Specifically, he mentions the adage, “God never gives you anything you can’t handle.” He notes, “This phrase is not biblical, despite what people think.” He goes on to explain, “I hate the implication that God serves up such hardships like a waiter…” Although he notes that we have strength and resilience to deal with hardships, we cannot endure them alone. As he explains, “No matter how high the water rises, the God of Moses carries us on his shoulders. In our weakness, he is strong. And since we walk with him, he makes us strong, too.”

Perhaps our own experiences and struggles can allow us to be empathetic and compassionate to those who truly need comfort instead of just spouting glib phrases. If we share those times of darkness and doubt, others can see that God brought us through them, offering hope for the future. In 2 Colossians 1:4, the apostle Paul writes, “He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.”

As much as I would like to erase completely from my memory the trying times we faced when Alex’s behavior was fueled by extreme anxiety and spiraling out of control, I hope that sharing our experiences might help others. When we didn’t know what to do to help Alex, God led us to professionals who did know what to do. While helping Alex get better took a long time and a true test of our faith, we can look back and know that God had a plan. However, at the time, I kept trying to direct the situation myself and felt frustrated that God wasn’t answering my prayers on my timeline. When I finally relinquished control to God, putting my complete trust in Him, things started to fall into place. I had to admit that I didn’t understand why we had to go through all these struggles, but I trusted that God’s ways were better than mine. And they were.

Often, I’ve told people who know me well that I think one of the main lessons God wants me to learn in life is patience. Some of them have told me that they think I’m very patient; however, I’m still not naturally patient, in spite of the lessons God has given me. Instead, I think of myself as just tenacious, plugging away at making Alex better while strengthening my faith. As someone who likes to plan and organize every detail, I still have to be reminded that I’m not as in charge as I like to think I am.

Last week, on a smaller scale, God put me in my proper place again. With good intentions and well-thought plans, I was going take Alex completely off one of his medications. Since I already had the approval of his psychiatric nurse practitioner to make this change, and because Alex had responded well to prior dosage reductions of this particular medication, I felt certain this was the right time. Three days into the plan, his nurse practitioner’s office called to tell me that Alex’s thyroid hormone levels tested too high. Consequently, he needed to reduce his thyroid medication dosage by half immediately. Because we never do more than one medication change at a time so that we can easily note any reactions, I knew that we would have to abandon the plans to eliminate the other medication for now.

Even though I was frustrated and disappointed that we couldn’t move forward with getting him off the other medication, I realized that God had a different medication reduction plan than I did. Perhaps now is not the right time to remove that medication, and I need to trust that God, the great healer, knows better than I do. Certainly, any medication reduction is a cause for celebration, and God reminded me that He has a plan that supersedes any of mine. If I had any doubt or lack of faith, I have been comforted that Alex has responded quite well so far to the reduction in thyroid medication. Once again, I have to trust that God’s ways are always better than mine. And they are.

“When doubts filled my mind, Your comfort gave me renewed hope and cheer.” Psalm 94:19

Joy Overflowing

“Happiness depends on circumstances; joy depends on God.” ~ Reverend Billy Graham

Despite the ways autism impairs Alex’s language and social skills, he is intent upon sharing the things that bring him joy. Galloping through the house with his lanky six-foot-tall frame, he seeks us out several times a day to tell us about something he finds delightful. As he happily relates something he’s seen or heard that he finds interesting, amusing, or exciting, we are pleased that he wants to include us. With his contagious enthusiasm, we can’t help but share in his overflowing joy, even in seemingly simple matters.

For example, Alex’s interest in numbers and mathematical concepts has led him to an interest in the economy. He closely follows the stock market and gets excited when stocks are doing well. Not just content that the markets are doing well, he also wants to know why the economy is thriving. Knowing that certain events will lead to a good day on the stock market, he will ask Ed, “What’s the good news?” While an up day on the stock market makes Alex happy, knowing the reasons why makes him even happier.

Similarly, Alex finds watching oil prices interesting, and he knows that oil prices will influence gasoline prices. Even though Alex doesn’t own a car, buy gasoline, or even drive, he still keeps a close watch on gas prices. Besides comparing gas prices on the Gas Buddy website and at various gas stations as we drive around town, he has recently discovered a new favorite website, Fuelcaster, that predicts future gas prices. Lately, he’s been happily announcing to us after checking Fuelcaster, “Gas prices are going down tomorrow!” Fortunately, this information comes in quite handy so that we can plan our trips to the gas station and save a few cents per gallon.

Besides following economic trends, Alex additionally takes great pleasure in watching game shows on television. Along with learning trivia and how much common items cost, he has also learned to be genuinely happy for people he has never met. Often, he will come running to tell us that someone won a car on Wheel of Fortune or The Price Is Right, and he’s thrilled that they have won a grand prize. Recently, he’s been watching reruns of Supermarket Sweep, and he likes when the contestants earn extra time so that their chances of winning the final round are better. Nearly every day, he will energetically tell us, “Someone got three minutes!” He is also pleased when contestants win large sums of money on Jeopardy. People on game shows have no idea that they have such a strong cheerleader in Alex.

Aside from watching business shows and game shows, Alex also takes pleasure from listening to voices and music. He’s especially fascinated by little kids’ voices, and he will eagerly tell us that he heard someone with “a young voice.” He also likes listening to singers with raspy voices, especially Bob Dylan—I blame his father for that. If he hears someone singing with a gravelly voice, he will come running to ask us, “Is that Bob Dylan?” Even if it’s not Bob, Alex is still delighted to listen to a similar vocal style. Even more entertaining to watch is when Alex recognizes a song he likes. As a smile crosses his face, he will eagerly proclaim the song as his “favorite song.” Apparently, he has about two dozen favorite songs, according to what he has told us, but clearly these special songs fill him with joy. I especially like watching him listen to the live version of Garth Brooks’ “Friends in Low Places.” I’m not sure whether Alex likes this particular rendition because it’s not played as often as the regular CD version or because he finds the telling off of the “little lady” quite amusing. Nonetheless, he always grins when he hears it.

While Alex appreciates the daily joys in life, he also greatly values things that happen infrequently. He delights in those events that he deems “rare” and “special,” such as holidays or world records. He will announce these occurrences with a proper amount of awe: “It’s rare for a basketball team to score one hundred points!” or “It’s rare for the temperature to be minus digits!” or “It’s rare for Daddy to talk on the phone!” Even more entertaining to watch is when Alex proclaims in an animated way that something is “extremely rare.” For example, “It’s extremely rare for old ladies NOT to have old lady voices!” Even in the seemingly mundane, Alex finds something novel that makes him happy.

Even though autism has placed obstacles on Alex’s life, God has blessed him with an ease in finding joy in everyday experiences. As we approach the celebration of Thanksgiving later this week, I’m grateful for the lessons Alex has taught me. First, listen for the delightful lilt of a child’s voice or the familiar first notes of a favorite tune. Then, feel happy for economic upturns or someone else’s good fortune. Finally, look for the rare and special things in life, including those people like Alex who find joy in simple things and unexpected places and who share these blessings so that we, too, feel joy.

“I pray that God, the source of hope, will fill you completely with joy and peace because you trust in Him. Then you will overflow with confident hope through the power of the Holy Spirit.” Romans 15:13

Insomnia and Autism

Occasionally, we’ll hear Alex come walking downstairs from his bedroom after his nightly 10:00 bedtime to inform us that he’s “having difficulty sleeping.” Usually, we can remedy this problem by adjusting the vent in his room to make it warmer or cooler, attending to any physical issues bothering him, or reassuring him that a noisy thunderstorm won’t last much longer. Because these instances of sleep problems are relatively rare now, we’re thankful that he’s overcome the nightly bouts of insomnia that occurred when he was younger.

When Alex was a little boy, we’d often awaken to find him turning on the lights in his bedroom to read a book or sitting in a living room recliner to watch The Weather Channel or overseas stock market reports on television in the middle of the night. He never seemed upset that he couldn’t sleep, but we knew this was an issue that needed to be fixed so that we all could get a good night’s sleep.

According to the article, “Sleep problems in autism, explained,” written by Hannah Furfaro and published November 13, 2017, on the website Spectrum, sleep issues are quite common in children with autism. [To read this article, please click here.] While 10-16% of typical children have problems with sleeping, an astounding 44-86% of children with autism have serious difficulties with sleeping.

In contrast to typical people, those with autism take a longer time to fall asleep: an average of eleven minutes longer than most people. In addition, many people with autism awaken frequently during the night. For some, these nightly interruptions of sleep are related to apnea, which causes them to stop breathing several times during the night. Studies also show that people with autism spend less time in REM (rapid eye movement) sleep. While typical people spend 23% of their sleep time engaged in REM, those with autism are only in REM sleep 15% of the time. This difference proves important because REM sleep plays a key role in learning and retaining memories.

Researchers have identified potential reasons for the differences in sleep patterns for people with autism. First, some people with autism take medications that may interfere with their sleep, such as stimulants prescribed for those who also have attention-deficit hyperactivity disorder (ADHD). Also, many people with autism have coexisting conditions, including anxiety and ADHD, which make sleeping more difficult. Moreover, many people with autism have gastrointestinal issues that may cause abdominal pains that disturb sleep.

Along with physical conditions, some people with autism have genetic mutations that may be related to sleep difficulties. For example, some genetic mutations associated with autism impact melatonin levels. Melatonin is a natural hormone that regulates the cycles of being awake and asleep. Too little melatonin in the system can cause difficulties with sleeping. Apparently, this genetic mutation is rather common in autism. In 2005, researchers discovered that people with autism were twice as likely to have genetic mutations impacting the sleep-wake cycle as typical people.

No matter what the cause of poor sleep in people with autism may be, the effects are consistently detrimental. A lack of sleep in children with autism tends to lead to negative behaviors, such as more severe repetitive behaviors and more impaired social skills. Children who have autism and sleep issues also tend to score lower on intelligence tests. These observed consequences of lack of sleep in children with autism may be related to the increased hyperactivity and distractibility noted in a 2009 research study. However, scientists have not yet ascertained whether the sleep issues cause the behavior issues or whether the behaviors, such as hyperactivity or anxiety, cause the sleep difficulties.

Nonetheless, certain methods may help improve sleep for children and adults with autism. Following a bedtime routine with a specific order of activities may be useful. Moreover, keeping a regular schedule of times to go to sleep and times to wake up may assist the body and brain in establishing consistent sleep-wake cycles. Also, adjusting temperatures and lighting in the bedroom may be needed to help the person with autism sleep better. Finally, melatonin supplements offer a safe and effective way to help children and adults with autism go to sleep more quickly and to engage in better quality sleep, according to researchers.

Finding ways to help people with autism improve their sleep offers them several benefits. Specifically, Angela Maxwell-Horn, assistant professor of pediatrics at Vanderbilt University in Nashville, Tennessee, notes that better sleep allows children with autism to decrease their irritability and to improve their learning and behavior.

From our experience with overcoming Alex’s sleep difficulties, I would also note that time-release melatonin may be helpful to some people with autism. Not only does this supplement help people fall asleep faster, but the time-release component also helps them stay asleep all night. In addition, since some people with autism have sound sensitivity and can hear even barely audible noises, a source of white noise, such as a fan or a sound machine, might be helpful. We keep a small air cleaner fan running in Alex’s bedroom at all times to create a subtle whirring sound that drowns out other noises while filtering the air. Although he no longer takes melatonin supplements, as he did when he was younger, Alex sleeps peacefully nearly every night. Thankfully, using routines, schedules, and white noise enables Alex to get the rest his body needs. Moreover, we certainly don’t miss having to interrupt his insomniac 3 A.M. reading or television watching sessions. Now, we can all get a good night’s sleep, which is a blessing we never take for granted.

“In peace I will lie down and sleep, for You alone, O Lord, will keep me safe.” Psalm 4:8

New Speech Therapy Method Offers Hope for Autism

For many children with autism, speech therapy provides crucial training to help them develop language skills. A recently published research article describes a new form of speech therapy that offers promising results to children with autism whose speech skills are limited. The article, “Behavioral predictors of improved speech output in minimally verbal children with autism,” published in the October 2018 issue of Autism Research and available online through the Wiley Online Library, describes the AMMT method and suggests which children are most likely to benefit from this form of speech therapy. [To read this article, please click here.]

The researchers, affiliated with Boston University, Harvard Medical School, and Beth Israel Deaconess Medical Center, all located in Boston, Massachusetts, looked for factors that would predict improvement in spoken language for minimally verbal children with autism. Their study included 38 minimally verbal children with autism ranging from ages three years and five months to ten years and eight months.

The children received one of two forms of speech therapy and participated in a minimum of twenty-five sessions that met five days a week for forty-five minutes each time. Most of the children engaged in auditory-motor mapping training (AMMT), “a novel therapy that uses intonation (singing) and rhythmic hand tapping.” The researchers further describe AMMT as “one of a small number of music-based treatments that have recently begun to be used effectively for teaching language and social skills to children with ASD” [autism spectrum disorders]. The other children in the study—the control group— engaged in speech repetition therapy (SRT), which involves no singing or tapping, only saying words aloud.

During these sessions of speech therapy, the children were given thirty familiar two syllable words to say aloud, such as “mommy,” “cookie,” and “bye-bye.” The children in the SRT group simply repeated these words with the speech therapist. However, the children in the AMMT group would sing the words while using two hands to tap on drums at the same time. This method not only combines using auditory and motor skills but also holds the attention of the children during the therapy sessions. The researchers discovered that the children who participated in the AMMT therapy improved their speech production more than those who received SRT therapy.

In addition, the researchers studied which factors were most closely linked to speech improvement, such as age, gender, severity of autism, nonverbal IQ, expressive language skills, and phonetic inventory (the number of speech sounds children can repeat correctly). In some children, the severity of autism influenced the amount of progress made in therapy. However, phonetic inventory was the strongest predictor of how much the children would improve. Researchers were surprised to discover that nonverbal IQ, expressive language, and age did not predict the level of improvement.

In fact, they noted that the older children may have better attention spans during therapy sessions that enabled them to make progress. While the value of speech therapy for older minimally verbal children with autism is sometimes questioned, the researchers note that their observations suggest some older children with autism can benefit from speech therapy.

Although the researchers admit that working with minimally verbal children can be difficult, they also stress the value of effective treatment. Approximately 25% of children with autism are considered minimally verbal. Developing language skills tends to reduce behavioral issues and improve long-term outcomes for these children. As the researchers stress, there is a “great need for these children to acquire even a few words.”

While the researchers affirm the need for further study in the area of speech therapy for minimally verbal children with autism, their study offers hope. First, the AMMT method appears to develop speech skills successfully by combining speech with singing and tapping. Moreover, their results indicate that even older children can develop their speech skills through proper therapy. Certainly, helping children with autism learn to speak is a noble cause, allowing them to communicate their wants and needs, to express their thoughts and feelings, and to interact with others so that they can lead fulfilling lives.

“He has given me a new song to sing, a hymn of praise to our God. Many will see what He has done and be amazed. They will put their trust in the Lord.” Psalm 40:3