Breaks and Breakthroughs

Like many students with autism, Alex has a laminated card that reads, “I need a break” his therapist gave him a few years ago. These visual aids communicate an important need for those who have limited verbal skills or for those who simply may be too upset to speak. In addition, knowing that break time is available may also relieve stress. Considering how difficult communication, social interaction, and motor tasks can be for people with autism, certainly they need to know that taking a break is always an option. Over time, as Alex has mastered skills and learned how to cope with stress better, he has relied upon his break card less and less, needing fewer breaks and more easily verbalizing his needs.

In June, after writing this blog for nine years, I decided to take a break from writing at least for the summer. Frustrated with the lack of useful studies being done to help people with autism, I couldn’t find interesting research to share. In addition, I knew that my summer would be devoted to weaning Alex off an anxiety medication that drug companies had stopped manufacturing. Even though he has done well when we have taken him off other medications, we know that he deals with sensory issues as his nervous system adjusts to the changes. Specifically, everything sounds louder to him, and his sense of touch is more sensitive. I imagine that his nerves respond similarly to when numbing subsides after dental work or a foot “wakes up” after being “asleep.” At first, this sensory overload can even be painful until the nerves adjust.

Consequently, we have helped Alex adjust to the changes, keeping him from places where noises could bother him, and understanding that he may be irritable at times, dealing with the physical changes. While he has been adjusting to the medication reduction, I have been continuing to research, hoping to find ways to help him cope in a world that overwhelms him at times. After watching a webinar last month, I found a simple solution that has helped Alex tremendously.

In an online Facebook talk sponsored by TACA, The Autism Community in Action, Dr. Jerry Kartzinel explained the link between autism, anxiety, and adrenaline. He likened some with autism as being like rabbits, who flee when sensing danger, and others as being like lions, ready to fight when adrenaline rises. He recommended monitoring the pulses through fitness devices to observe rushes of adrenaline that cause heart rates to spike. Since all of his explanations made perfect sense to me, especially with my observations of how Alex reacts to anxiety, I began researching fitness trackers.

After comparing various features, I wound up getting a Fitbit Inspire HR (heart rate) for Alex at Target for less than one hundred dollars. Since he always wears a wristwatch, he was unfazed about also wearing a Fitbit on his wrist, especially since it offers data he finds interesting: time, date, steps and distance walked each day, and heart rate. While this Fitbit also records data related to sleep, we don’t have him wear it during the night, for fear it may impede his healthy sleeping habits. At the end of the day, we sync the Fitbit to an app on our iPads and can see graphs showing Alex’s heart rate throughout the day.

In the past month, whenever Alex seems agitated, we ask him to check his pulse on the Fitbit. He then calls out the number displayed, and typically his pulse is over 100 if he’s upset. Because he’s so attuned to his body and numbers, he understands the link between his emotions and his physical response measured by his heart rate. We remind him to get his heart rate down, and he will sit calmly, sometimes rocking, until his heart rate returns to a normal level. As we check his heart rate graph at the end of the day, we are rarely surprised because his numbers correspond to specific events at specific times during the day. Not only can we track any times he was upset marked by increases in his pulse, but we can also see increases in heart rate due to activity, such as coming downstairs for meals or excitement when his therapists come to see him. Moreover, we’ve discovered that he’s remarkably mellow, as evidenced by low pulses, most of the time.

A bonus feature of the Fitbit Inspire HR is the Relax mode, which has also proven quite helpful. The Relax feature flashes instructions on the Fitbit screen, telling the user to focus on breathing and the stars that move on the screen. Intermittently, the Fitbit will send gentle vibrations that softly buzz. According to the website Enabling Devices, “Vibration Therapy Tools are fundamental when working with sensory integration. Vibrating products are beneficial to special needs children especially for those with autism, ADHD, or sensory processing disorder. They can calm kids who need more sensory feedback or help train hypersensitive kids to tolerate more sensations.” Although one might think this buzzing would be annoying to someone with sensitive hearing and touch, Alex finds this gentle stimulation calming. After the two-minute Relax session is complete, Alex’s pulse will usually drop at least twenty beats.

While eliminating an anxiety medication has caused Alex to deal with sensory issues in the past few months, he has adapted remarkably well for the most part. Because he is aware of his physical needs, he usually knows when he needs to take a break. Recognizing the connection between his heart rate and stress has enabled him to be even more in tune with his body and to gain greater control when his adrenaline levels make him feel out of control. Once again, I’m convinced that God guides our path, as research led us to a simple device that has proven extremely helpful to our everyday lives. By keeping track of his heart rate, Alex is learning to cope with stress and better reflect the pure heart God has given him.

“Then Jesus said, ‘Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.’” Matthew: 11:28

Virtual Reality as Therapy for Autism

Researchers estimate approximately one fourth of children who have autism struggle with phobias that can negatively impact their daily lives. Thanks to modern technology, researchers have discovered a promising new method of treating these extreme fears. Using virtual reality therapy, researchers at Newcastle University in England in conjunction with Third Eye NeuroTech have created interactive computer-generated scenarios to help children with autism deal with their fears.

Last week, Science Daily published an online article regarding this research that was also published on February 14, 2019, in the Journal of Autism and Developmental Disorders and Autism in Adulthood. [To read “Immersive virtual reality therapy shows lasting effect in treatment of phobias in children with autism,” please click here.]

For this therapy, known as the Blue Room treatment, children and adults with autism were exposed to a 360-degree virtual environment related to their specific fears. In real life, the people with autism would have difficulty coping with these frightening scenes. As researcher Dr. Morag Maskey notes, people with autism may have trouble imagining scenes, but the virtual reality allows them to visualize these scenarios while they are provided support to deal with their fears. Accompanied by a psychologist, the children used an iPad to navigate and control completely the situations they were shown. In addition, they did not have to wear goggles, unlike some forms of virtual reality.

Some of the phobias addressed in this treatment included fears of the dark, walking into rooms, school, public transportation, elevators, dolls, balloons, dogs, and wasps and bees. For the first study, 32 children with autism who were between 8 and 14 years old were divided equally into two groups. The first group began treatment in the Blue Room immediately, whereas the second group, acting as the control group, waited six months to begin the Blue Room treatment. The children spent four sessions per week in the Blue Room with a psychologist observing personalized scenarios related to their individual phobias. Their parents could also observe these sessions through a video link. After these treatments, the parents provided opportunities for their children to face their fears in the real world.

Two weeks after the virtual reality treatment, 25% of the children in the first group were able to cope with their specific phobias. Six months later, the positive effects of the therapy remained, as 38% showed improvement, and only one child displayed an increase in the intensity of the phobia. In the second group, 40% showed improvement two weeks after completing the treatment, and 45% retained the benefits of the therapy six months later.

In a similar but smaller study, eight adults with autism ranging in age from 18 to 57 participated in four twenty-minute sessions in the Blue Room interacting with scenarios personalized for their specific phobias. Six months later, five of the adults retained the benefits of this therapy.

While the research team plans further studies to see how long lasting the effects of this therapy are and to discover why some children and adults do not respond to this treatment, the positive results are encouraging. As Dr. Maskey states, “It is incredibly rewarding to see the effect it [the Blue Room treatment method] can have for some, overcoming a situation which just a week previously would have been so distressing.”

Moreover, the leader of the study, Professor Jeremy Parr from the Institute of Neuroscience at Newcastle University, emphasizes how life changing the effects of this therapy could be. He states, “For many children and their families, anxiety can rule their lives as they try to avoid the situations which can trigger their child’s fears or phobia.” Furthermore, he adds that this treatment “offers hope to families who have very few treatment options for anxiety available to them.”

Since extreme fears can produce debilitating anxiety in people with autism, potentially triggering aggressive panic attacks or causing them to avoid situations they fear, addressing phobias in a supportive way could have lifelong benefits. Fortunately, the researchers at Newcastle University and the technology experts from Third Eye NeuroTech have discovered that virtual reality may help children and adults with autism successfully overcome phobias so that they may face everyday reality fearlessly.

“I prayed to the Lord, and He answered me. He freed me from all my fears.” Psalm 34:4

Blooming

“Little darling, it’s been a long cold lonely winter. Little darling, it feels like years since it’s been here. Here comes the sun. Here comes the sun, and I say it’s all right.”––“Here Comes the Sun” by George Harrison

After long cold winters in Northwest Indiana, I eagerly anticipate the arrival of spring. This year, winter seemed to last even longer than usual; with temperatures running about ten degrees below average, we had one of the coldest Aprils in history. (Thanks to my amateur meteorologist husband and son for sharing that statistic with me!) Because it was colder than usual, the trees remained bare, and flowers were slow to bloom, making the arrival of spring appear about a month late.

For me, the main sign of spring is the blooming of the magnolia tree in our back yard. Day after day, I looked out my back window to see if the tightly closed buds had opened, but the cold weather delayed the debut of the blossoms. Perhaps this year the tree would not flower, and I would miss my favorite sign of spring. Finally, about a month after the magnolia tree typically blooms, the beautiful magenta flowers all suddenly opened once the time was right, assuring me that sometimes we have to wait, but the positive outcome rewards the waiting.

Early into the long cold winter, Alex suddenly developed an aversion to going places, something he had thoroughly enjoyed. With any changes in his behavior, we analyze the potential causes, ask him for insights, and hope that he’ll soon get over whatever is bothering him. Because he had developed some increased sensory sensitivity, we assumed that he was bothered by the cold and wind, which seemed reasonable. However, becoming a hermit was not reasonable. Although we were able to convince him to go to regular medical appointments, he had so much anxiety about going outside that he had no interest in going anyplace until the weather improved. Despite our encouragement, he wanted to stay home where it was warm.

Like the magnolia tree, I kept looking for signs that Alex might be ready to change but knew that until the weather improved, change was not likely. In the meantime, I decided that this would be a good time for another medication reduction that his psychiatric nurse practitioner had suggested. Since nothing else was changing, including Alex’s aversion to going places, we might as well see how he reacted to decreasing a sedative. In the past year we have been able to reduce or eliminate five of the medications he takes for anxiety. With each medication change, we have gradually tapered the dosage, prayed for positive results with no setbacks, and, thankfully, he has responded quite well.

When the magnolia flowers blossomed, I knew the time was right to make the change with Alex’s medication. Watching him carefully, I saw no signs of regression, which is always encouraging. Reducing his nighttime dose neither impacted his sleep negatively nor made him awaken in a foul mood. Along with seeing a lack of negative behaviors, we were seeing positive changes. In the past month, Alex has become more alert and energetic, “happy hopping” skipping through the house, and he readily engages in conversation, asking appropriate questions. Moreover, he is speaking in longer, more complete, and grammatically correct sentences. Whether these changes are related to the medication reduction or simply signs of progress, we are delighted with the awakening in Alex.

After seeing the improvements in his speech and alertness, we decided that now was the time to overcome the winter hibernation Alex had imposed upon himself. We were determined to get him out of the house last week. Enticed by the opening of a new superstore in our town, Alex was eager to see just how big this new store is. With the bribe of new composition notebooks for his willingness to go shopping, he was on board for the trip. A perfect summer day––sunny, calm, and seventy-five degrees––meant that Alex had no excuses for not going outside. As Ed and I chatted to Alex about topics he likes, such as gas prices and the weather, we hoped to distract him from any fears about leaving the house. With all the stars aligned, Alex made it all the way to the store without telling us he needed to go home, shopped happily, and left with not only his beloved red notebooks but also a map of the store he could study. We knew the outing was successful when he told us that he’d like to go back and check out the grocery part of the store, and that he liked the store “one hundred percent,” the highest praise he offers.

The next day, he informed me that he wanted to go to Burger King with his behavioral therapist and me. As part of his therapy, she and I take him places in the community as recreational therapy to practice social skills she has taught him. However, her busy schedule and his reluctance to go places has prevented these outings. Like me, she was delighted that he wanted to go out, and we returned to one of his favorite places after months of not going there. When we arrived, two kind ladies who work there and take a special interest in him enthusiastically greeted Alex by name and told him how much they had missed seeing him. If he had any qualms about going there, their warmth made him feel welcome and reassured. After chatting happily with his therapist and me over an orange-vanilla ginger ale, Alex told us that he’d like to go back to Burger King again soon.

With two successful outings behind us, we hoped we were on a roll. Another evening, we took Alex to his dad’s office to check the mail and watched him walk confidently down the hallways, even though he hadn’t been there in months. Once again, he proclaimed that he liked going there “one hundred percent,” making us hopeful that his anxiety about going places may be gone. Yesterday, I asked Alex if he wanted to go to Culver’s, one of his favorite fast food restaurants, and he eagerly said that he did. He did have one stipulation, however. He wanted to go to the one in Chesterton because “it’s further away” than the one here in town. Clearly, he seems to be over his fear of being too far from home. Even though he had eaten an early dinner, he was willing to sit with Ed and me as we ate, contentedly sipping a root beer (that is “special because they make their own,” as he reminded us). Despite all the people and noise, Alex showed no signs of anxiety, concluding that he had enjoyed that trip “one hundred percent” also and wanted to come back again.

After a good week with Alex not only willing to go places after months of staying home but also with his showing signs of thoroughly enjoying himself during these outings, we are encouraged that he has gotten past his fears of leaving the house, which is an answer to prayers. Even though we had become tired of waiting for change, frustrated when we saw no signs of progress, and even concerned that what we first thought was temporary might be permanent, God caused Alex to bloom at the right time. Once again, we have been reminded that God is always faithful and will fulfill His plans in His good time. As we look forward with anticipation to a summer of family outings, we are thankful that God continues to heal Alex so that he can enjoy all the good things in life.

“The wilderness and the dry land shall be glad; the desert shall rejoice and blossom like the crocus; it shall blossom abundantly and rejoice with joy and singing.” Isaiah 35:1-2

Dentist Appointment

 

Last week, we took Alex to the dentist for his regular six-month cleaning and check-up appointment. Although he usually likes going to the dentist, his recent anxiety about going places had us concerned how he might react this time. Unlike some people who fear going to the dentist, Alex has had good experiences through the years and actually looks forward to his dental visits. The dental hygienist who has cleaned his teeth the past few years is especially sweet and patient with him, and her encouragement and praise make him eager to cooperate with her.

As with all of his appointments, I am careful to schedule a time that works best for Alex. For some doctors, we schedule Alex’s appointments first thing in the morning to avoid having to wait, which is more common in the afternoon. We try to avoid times when he might miss his beloved game shows, The Price Is Right or Jeopardy, and we avoid appointments that might overlap meal times. We also need to schedule around his regular behavioral and music therapy sessions because he doesn’t want to miss them. Working around Alex’s sacred schedule allows small windows of times in the morning and afternoon, but we manage to keep him happy.

For his dentist appointment, he didn’t have to sit in the waiting room but a few minutes before his dental hygienist came to greet him. Immediately, he happily jumped up and followed her back to the room where his teeth would be cleaned and checked—so far, so good. (We were even thrilled that he got into and out of our car without being coaxed.) Once he was seated in the dentist’s chair, his hygienist began putting on the paper bib to protect his clothes as she cleaned his teeth. She warned him that the metal chain that holds the bib might be a little cold on the back of his neck. As soon as he felt the chain against his neck, he decided it was too cold and decided he wanted nothing to do with the bib, pulling it off the chain and handing it to me. I assured him that he didn’t have to wear the bib and assured her that his shirt could be washed if anything spilled on it.

While the hygienist was preparing to clean Alex’s teeth, she chatted with him and tried to make sure he was comfortable, even asking if the light bothered him (probably knowing that the bib did), but he told her the light was fine. However, he was a little shaky, and she gently patted him on the shoulder and asked him if he was okay. Calmly, he admitted he was a little nervous. While Alex used to utilize a series of calm down skills, he now prefers only two options when he’s anxious: sit quietly or talk about his concerns. Consequently, I asked him if he wanted to talk or be quiet. He said he wanted to sit quietly and needed two minutes to calm down. Despite his nerves, he seemed to be in good control of his emotions.

Knowing that Alex literally meant he needed exactly two minutes, I figured this would give his hygienist time to note his medication reductions on his chart, so I gave her a copy of his updated medication dosages. Also, I asked her if she could put on the country music cable channel on the television after asking Alex if he would like some music. Clearly, Alex was regaining his composure in that short amount of time, as he stopped shaking and he visibly relaxed, even starting to sing along softly to the music. At the end of the two minutes, he announced that he was ready to have his teeth cleaned. He knew.

During the cleaning, Alex was calm and cooperative, answering any questions she asked him. Concerned for his comfort and attentive to his needs, she told him each step of the process and gave him choices to make him feel in control of the situation. For example, she asked him if he wanted her to spray his teeth with water or to drink from a cup himself. Usually, he doesn’t mind the water hose and suction, but he asked for a cup of water to rinse instead. Because of his sensory defensiveness, we always have to coax him to open his mouth wider, but he was cooperative, and she was able to clean his teeth successfully. Fortunately, Alex’s good daily dental hygiene habit of faithfully brushing his teeth twice a day with a sonic electric toothbrush pays off in that he had very little plaque that needed to be removed. When she was done, she enthusiastically praised him for doing such a great job. I think she was especially impressed––as was I––that he pulled himself together so nicely even though he started the session with some trepidation.

As we waited for the dentist to come and check Alex’s teeth, his hygienist asked him if he had any questions for her. He immediately asked her if he had any cavities. She told him that she didn’t see any, but the dentist would check that for him. While the dentist checked Alex’s teeth, his hygienist sang Alex’s praises, telling what a good job he did cleaning his teeth daily and how well he had cooperated as she cleaned his teeth. This seemed to make Alex (and certainly his mother) proud. After the dentist examined Alex’s teeth, he stated that everything looked good, there were no cavities, and he would see Alex again in August for his next six-month check-up.

Despite any fears Alex had about going to the dentist, or for that matter, any fears we had about taking him to the dentist, everything went remarkably smoothly. Even though he was a bit anxious, we were proud of the way he handled himself, never getting upset, calmly admitting his nervousness, and quickly calming himself so that he could do what needed to be done. Needless to say, his behavioral therapist, who has taught him many ways to cope with anxiety, was delighted to hear how well he had dealt with his nerves at the dentist. Of course, we were not only pleased with how well Alex coped at the dentist, but also with getting a good report that his teeth are healthy. Once again, we find ourselves grateful to God for the progress Alex continues to make in dealing with anxiety and for the kindhearted people who work with Alex and bring out the best in him. Most of all, we are thankful for Alex’s faith in God that helps him fight his fears, knowing that God watches over him and brings him the calm he needs whenever life overwhelms him.

“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17

Venturing Out

 

In the past few weeks, Alex has developed an aversion to leaving the house. Since he usually loves going places, this is totally out of character for him. However, the thought of going out has caused him to have panic attacks, and to avert further distress, we have supported his decision to stay home. Amateur meteorologist that he is, Alex tells us that the weather is too cold and windy to go outside. The bitterly cold temperatures and subzero wind chills this month prove his logic correct. However, we also know that at some point he will need to leave the house, and we’ve wondered when he might be willing to venture outside.

Bless his heart, he has attempted to overcome his fears of going out, even being willing to put on his shoes and coat before deciding that he just can’t go. We’ve had him buckled in the car, and even gone a few blocks before he tells he needs to go home. Clearly, he has been dealing with some internal conflict because he seems disappointed that he can’t go places he wants to go. Essentially, “the spirit is willing, but the flesh is weak.”

Knowing that he has two appointments coming up in the next few weeks, I have wracked my brain trying to figure out someplace we could take him to get over his fears. His behavioral therapist felt that if he had a good experience of going out, Alex would be able to overcome his fears of leaving the house. Since the weather yesterday was warmer than it had been, the winds were calm, and the skies were clear, I knew we had to try one more time to get him in the car and go someplace. I decided we were going to take him to the lab to have his blood drawn before his upcoming six-month appointment with the nurse practitioner who oversees his medications.

While taking Alex for a blood draw may seem like a strange enticement to overcome his fears of leaving the house, he loves going to the lab and thinks it’s a grand adventure. The technicians there are very kind to him, and he is always cooperative for them. In our usual swift, coordinated efforts, Ed and I managed to get Alex out of the house, into the car, and to the lab without any protesting on his part. As we arrived at the lab, he didn’t seem at all anxious, and he walked quickly toward the door as if he didn’t have a care in the world. While I went to register him for the blood tests, Alex and Ed sat in the comfortable waiting room watching NBA highlights on a large screen television. Usually, checking in for tests at this lab is a simple task, and since we were the only ones there, I thought we were home free. I celebrated a little too early, though.

As I gave the information to the clerk, she began to question me about why Alex had not fasted for twelve hours. I explained to her that he has autism, and we have to do these tests when he is at his best, so we never do the twelve-hour fast. She wanted to push the point, and I more forcefully explained that his doctors understand why we do the tests without fasting and are fine with that. Then she was insistent that he could not do the test for one of his medications because he hadn’t waited twelve hours. Again, I explained that we always do the tests this way. Unconvinced, she told me she needed to call the lab technician to check if that was a problem. I told her that I could speak to the technician myself because I knew this was not a problem. Nonetheless, she called the technician who said it would be okay, just as I had told her.

While speaking with her, I realized the transitions I had made in my tone and attitude in the few minutes I was there. Although I had started with my usual pleasant and polite self, I found myself using my middle school teacher voice, the one that calmly yet firmly told students, “Do NOT put that pen in the pencil sharpener!” When that didn’t seem effective, I resorted to my mother’s voice. I’m not talking about the voice I use as Alex’s mother; I mean the voice of my own mother when she is perturbed that increases in volume and sarcasm. We both learned that from the master, her mother, my grandmother, whose ring I always wear to remind me never to take guff from anyone because she never did. Finally, I channeled the voices of my husband’s New York-born sisters who get things done because they don’t let anyone push them around. With all those strong women as models in my mind, I was finally able to convince the clerk that I knew what I was doing.

After all that, I thought things would move along smoothly. However, a change in insurance companies this month seemed to be a huge deal as she tried to input the new information. After several tries, she was able to get the insurance straightened out, and then I thought we were on our way. However, she also questioned the diagnostic code on the lab orders and said that it was incorrect. As I spouted off the code number for autism and the diagnosis of medication management, suddenly, the diagnostic code seemed to be all right. In the end, I resorted to my pleasant and polite voice, thanked her for her trouble, and wished her a nice evening. Thankfully, Ed and Alex were having a more enjoyable time in the waiting room watching television, and Alex had been remarkably patient and calm in this first outing in weeks.

Fortunately, we didn’t wait long before the lab technician came to get us, and she remembered Alex from a previous time. She was friendly and kind to him, and he did a fantastic job of answering her questions, being polite, and sitting calmly and patiently as she drew five vials of blood. Remarking about what a great job he did, she praised him as "the best patient" and told him to come back and see her anytime. Of course, Ed and I were very proud of Alex and how well he handled the situation, especially since going places had been causing such anxiety for him. Moreover, we were relieved that not only had he been cooperative about going to the lab, but he also had successfully done the tests that we needed to have run on him.

While we thought the hardest part of this outing would be getting Alex to go out, we didn’t anticipate that the registration, which is usually fast and easy, would be the most difficult. As the saying goes, “All’s well that ends well,” and we are delighted that he did so well remaining calm going out and throughout the lab tests. Now we hope and pray that his routine lab tests show that he’s healthy and that this successful trip out of the house marks the end of his anxiety about going places. If Alex can go have blood drawn without any fear, surely he can conquer his worries about going out in the windy winter weather.

“For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.” Isaiah 41:13

Expressing Emotions

 

Recently, Alex’s behavioral therapist has been working with him on understanding and expressing his emotions appropriately. They use a system of colors to identify what he is feeling: green for calm and content, yellow for nervous, and red for frantic. This stoplight system seems to appeal to Alex as they discuss not only what might cause him to feel these different emotions but also how to cope when he enters the yellow and red zones.

For example, Alex indicates that he feels calm when he reads a book or watches television, but he becomes anxious if he’s worried about the stock market or thinks about losing money at the casino. (He’s only been to a casino twice and won money both times, but I guess this is a concern for him.) To ease his anxiety, his therapist has suggested that Alex should do things he enjoys and finds calming: reading books, watching television, and listening to music. When he becomes frantic, such as when he can’t find something, she recommends that he asks for help or talks to Ed or me to calm down.

Clearly, these strategies are working well as we have seen in the past week with situations that could have sent Alex into meltdown mode. With one of his medications reduced significantly and another taken away completely this summer because he has done so well managing anxiety, he has heightened sensory awareness. We notice him covering his ears for loud sounds, which he does not usually do, and his appetite has been off, probably due to increased sensitivity to tastes, smells, and textures. Since these medications were to ease his anxiety, we have closely monitored his emotions to make sure he would not be overwhelmed too much by the changes in his brain chemistry.

Fortunately, he has adapted quite well to the taking away of some anxiety medications. However, we have noticed that he does seem to have a wider range of emotions, which is to be expected and celebrated. Certainly, we did not want him to have his emotions flattened more than necessary. With the coping skills he has learned in behavioral therapy, he has gained control of his anxiety and learned to act appropriately, even when he’s not happy with a situation. However, sometimes these feelings take him a bit by surprise, even when he knows he’s entering the yellow or red zone.

On Monday evening, Ed and I had several errands to run, and Alex was happy to go along for the ride. Even though he had no particular interest in looking at picture framing hardware, he pleasantly accompanied us to five different stores, especially since he knew we were taking him to get an Italian ice afterward. At the last store, however, he was reaching his limit of patience. Somehow Ed had managed to get in the slowest check out lane, and I could see Alex’s patience being tested. I suggested that Alex and I wait near the doors so that we weren’t crowded in line. Still in the yellow zone, he was chatting with me, trying to remain calm but telling me he was worried, so I knew we needed to try something different before the red zone appeared. We walked back to the line where Ed was still waiting, and I took the items to the self-check lane while Ed and Alex went to the car to wait for me. Simply changing setting and knowing that he was about to receive his reward for patience––the Italian ice––allowed Alex to calm down and keep his anxiety from escalating.

On Thursday afternoon, in preparing for the arrival of Alex’s music therapist, I picked up one of Alex’s red composition notebooks from the floor and put it on the coffee table in another room to get it out of the way. A little later, I saw Alex walking from room to room, clearly searching for something. When I asked him if I could help him, he curtly told me no and continued looking for his lost possession. A few minutes later, I heard him yell downstairs, “You’re [meaning I’m] upset!” When I came to see what was wrong, he explained that he was looking for his red notebook, the one I had put away earlier. After reassuring him that I knew where it was, he was relieved, and I reminded him that he can always ask me for help if he needs it. On the other hand, I was proud of him for trying to find the notebook independently. Most of all, I was proud of him for verbalizing his feelings of frustration yet behaving appropriately.

Yesterday, we took him to a college football game, something he’d been eagerly anticipating all week. Because it was Homecoming Weekend, the stands were packed with people, much more crowded than usual. In addition, the speakers were blaring loud obnoxious rap music that seemed to bother Alex because he covered his ears several times. The final straw, however, was that the scoreboard was broken, and Alex relies upon those numbers, especially the game clock to keep track of the action. We had told him that we could leave at any time, but he managed to get through the first quarter. At the end of that quarter, I could see his anxiety emerging from the sensory overload. When I asked him if he wanted to stay or leave, he told me he wanted to leave but was concerned if that was okay. We assured him that he didn’t have to stay, and he seemed pleased we understood that he was overwhelmed by all the people, noise, and confusion. Again, we were proud of him for communicating what he needed to feel better without allowing himself to get too upset.

While it would be nice if every day were filled with only peaceful and pleasant things, we know that’s not realistic. As Alex experiences various situations and emotions, he will need to learn to cope with waiting, frustration, and sensory overload. Thankfully, he is adapting to these feelings and learning to express his concerns and needs so that we can help him find solutions to problems until he is able to navigate them on his own. Although we would wish for a life of only green times for Alex, we are pleased that he is figuring out how to cope with those yellow and red times that could overwhelm him by finding appropriate ways to deal with them. As always, we are grateful to God for all the progress Alex is making and for being able to witness just how far he has come.

“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17

Anxiety Aid

 

Despite medication and years of behavioral therapy, anxiety arises at times. Even though Alex has learned to cope with panic attacks much better, he still has moments when the world suddenly overwhelms him. Yesterday, we had just arrived at one of his favorite restaurants, and he began to panic that he couldn’t remember something from several years ago. Sitting next to him in the booth, I could feel him vibrating in his seat as adrenaline made him shaky, his eyes widened, and he desperately tried to communicate his fears. As Ed and I tried to reassure him and help him remember calming skills, he was trying to get ahold of himself because he really wanted to stay. For the first time ever, I noticed that his neck and face were splotched with red spots, which must have been a physical reaction because they disappeared a few minutes later when we convinced him that going home would be the best option under the circumstances.

Once we arrived home, he was calmer, but he was still a bit worried about his schedule, especially since plans had changed suddenly when we left the restaurant where we had planned to eat. Time schedules have proven very helpful to Alex over the years, allowing him to avoid being taken by surprise because he knows what is coming next. After I wrote a schedule outlining the rest of the evening, he settled down. A little later, he happily informed us that he was able to remember something he thought he had forgotten. Safe at home with a schedule, he was able to overcome the anxiety that panicked him and interfered with his usually unusually acute memory.

Over the years, we have made lists and schedules for Alex in a variety of ways: memo pads, legal pads, composition notebooks, and notes on his iPad. Problems have arisen at times, however, when he misplaced his precious lists intended to calm him and melted down because he couldn’t find the list he needed. To make his lists easier to find, I often use colored index cards. Last weekend, as Alex was carrying around a green index card with the schedule for the day, Ed reminded him to hold onto it tightly as we walked to a basketball game on a windy day. As the old saying goes, “Necessity is the mother of invention.” This time the father was the resourceful one, as Ed came up with a great idea.

Thinking of the wristbands baseball catchers and football quarterbacks wear to hold information regarding plays, Ed suggested that Alex could use one to hold his lists. Not only would we not have to worry about Alex losing his lists or having them blow away in the wind, but he would also be comforted to know that his beloved list was literally close at hand. The only problem was that I had no idea what those wristbands are called. A Google search informed me that they are known as wrist coaches. A little more online searching led me to discover that our local Dick’s Sporting Goods store had a variety of styles in stock.

A trip to the sports store was successful as I found one for $9.99: a Cutters mini wrist coach made of soft terry cloth material with the plastic holder on top that keeps the lists secure and dry. We also knew that we could convince Alex that the wrist coach was a great idea because he has seen catchers wear them on television. Yesterday, when he was dealing with his panic attack, I made him a schedule, slipped it into his wrist coach, and put the wrist coach on his arm. Needless to say, it worked like a charm. He kept turning his wrist to see the schedule, reassured that he knew where it was and what the rest of his day would entail. I just wish Ed had thought of this great idea sooner because it would have saved us countless times of frantic searches over the years for a list Alex misplaced.

While we wish Alex didn’t have to struggle with anxiety, we are pleased that he can cope better now, thanks to proper anti-anxiety medication and skills he has learned in therapy. However, we also know that he relies upon us whenever he finds himself overwhelmed, and we are thankful that we, too, have learned tricks and tips to help ease his fears.

“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17

Alex's Two Words About Autism

 

Recently, I read an inspiring blog entry published exactly a year ago today from one of my favorite autism mom writers, Emily Colson, the author of Dancing with Max, a memoir about her son who has autism. Not only is she a talented writer, but I also admire her strong faith in God and her ability to find humor in the midst of autism chaos. Most of all, I understand her unconditional love for Max, who, like Alex, is in his mid-twenties, but retains a childlike innocence.

In her essay, “Max’s Two Words About Autism,” she describes her enthusiasm about an upcoming appointment with a new doctor who has a daughter with autism. [To read this essay, please click here.] Sharing this information with Max, she notes, “The word autism has been a part of the conversation in our home since Max was very young.” Similarly, we have always been open with Alex about autism and how it affects him, not wanting him to think we have been keeping secrets from him. Moreover, we never want him to feel ashamed that he has autism, so we have candidly told him everything we know about the condition. Believing that knowledge is power, we have wanted Alex to gain power over a condition that has hindered his speech, fine motor skills, and social interactions.

Wondering what Max would say about autism, Emily Colson explains, “Thoughts of this journey and the bittersweet sound of the word swirled in my mind. None of this has been easy, yet God has made it beautiful. Autism has been the fertile ground in which God has grown my faith.” Brilliantly, she has described the duality of life with autism: the struggles and the triumphs. I know that the challenges of raising a child with autism has taught me greater patience and compassion and developed a stronger faith in God than I would have had without those challenges.

When Emily Colson asks her son to describe autism in two words, he tells her, “Love. Peace.” Clearly, he has found the good, despite the struggles of autism. Curious as to what Alex’s impressions of autism are, I asked him the same question Max was asked, “Can you tell me two things you want someone to know about autism?”

To be honest, I thought that Alex would respond with the phrase he uses when either he doesn’t have an answer or doesn’t want to give an answer: “What would be good?” However, I knew that if I wanted his honest opinion, I would need to force myself not to lead him with my own editorial comments. To my surprise, he immediately answered, “Mercury. Anxiety.”

While Max’s answers were more heartwarming, Alex’s answers were candid and revealed his understanding of what he has faced. He knows that he was diagnosed with mercury poisoning when he was younger, probably the result of the preservative thimerosal in the vaccines he received as an infant and young child. Moreover, he remembers being treated for the accumulation of this neurotoxin through chelation therapy for three years and perhaps even remembers our joy as each subsequent test revealed his levels of mercury decreasing. In addition, he knows that he cannot have shots that contain thimerosal, such as flu shots, and he must have composite instead of mercury-containing amalgam fillings in his teeth. Just as he knows to avoid glutens and dairy products because he has sensitivities, he realizes that mercury is harmful to him, too, and must be avoided.

In addition, Alex recognizes how anxiety affects his mental, emotional, and physical states. He realizes that at this point in his life, medication helps keep him calm so that anxiety does not escalate to levels that overwhelm him. Also, behavioral therapy and music therapy the past few years have taught him coping skills so that he can take control of his emotions and deal with situations he finds difficult. Most of the time, he copes very well. However, anxiety will still arise at times, and we find ways to help him deal with it constructively. For example, this morning, his world was rocked by the time change. Even though he has known for weeks about the switch from Daylight Savings Time back to Standard Time, the fact that his beloved clocks were wrong made him nervous. Until we changed the clocks with him this morning, he struggled to control his nerves, which gave him away by the adrenaline rush that made his hands and voice shaky. Although he deals with anxiety better now than he did in the past, this aspect of autism still plagues him daily.

While I would take away all of the struggles Alex has had to face through the years in a heartbeat if I could, I believe that he is also a better and stronger person because of what he has faced in life. As I watch him tenaciously and patiently work at tasks most people would abandon in frustration, I am thankful that God has equipped Alex with what he needs to overcome the challenges autism presents. Every night as I listen to Alex’s earnest prayers and requests to bless other people, I am grateful that God has given him a pure heart and strong faith that allows him to believe everything will be all right. As the scriptures describe, God has given us “beauty for ashes,” and we feel blessed that Alex has overcome many obstacles so that he can enjoy life to the fullest.

“...He will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair.” Isaiah 61:3

Consolation and Joy

 

Yesterday, Alex spent most of the evening relaxing on our back screened porch, lying in the hammock we had given Ed for Father’s Day. After a busy week filled with activity and a bit of anxiety, he probably just needed to unwind.

On Monday, we took him for his annual eye examination and were pleased by how well he cooperated. His optometrist does a great job of working with him to assess his vision, and the combination of reciting numbers and letters on the eye charts holds Alex’s interest, of course. When the first chart was put up on the wall, the assistant asked Alex if he could read any of the letters, and he said no. Thinking that he was looking in the wrong place, I pointed to the chart and questioned him myself. Again, and seemingly a little hurt that I didn’t believe his first response, he insisted that he couldn’t see any of the letters. The assistant then switched to the next larger size of letters, and Alex could easily read them aloud. He was telling the truth; his eyesight had simply gotten a little worse over the past year. With a new lens prescription, we picked out new frames nearly identical to the ones he’s been wearing for two years, and we were told the new glasses would arrive in about ten business days.

As a reward for being so pleasant at the eye doctor, we took him to our county fair that evening, which he really enjoyed. Watching him maneuver through crowds and handle all the sights, smells, sounds, and general confusion, we were pleased with how calm and content he remained the entire time we were there. In fact, observing the rather rude behavior of many other fair goers makes me think that they could also benefit from the lessons Alex has learned in behavioral therapy about using good manners and respecting personal space.

On Tuesday, Alex visited the dentist for the second time in a week because the regular six-month checkup last week revealed a cavity that needed filling. Because the sensation of numbness is a little overwhelming for him, we had practiced at home beforehand using the numbing cream and cotton swabs our dentist had given us last year and suggested we use prior to having a filling. Thanks to the expertise and kindness of our dentist and his assistant, Alex handled the drilling and filling amazingly well. In fact, he smiled right before the dentist began drilling and afterward told us that he liked going to the dentist “one hundred percent.” Of course, we are truly thankful to have understanding doctors who reassure Alex to gain his complete trust so that they can give him proper care.

On Wednesday, Alex’s peer companion came to spend the afternoon with him, and they seemed to enjoy each other’s company. As she kept him entertained, I tackled organizing his room. Filling a large trash bag with things he no longer needs, I realized how far he has come because I didn’t worry that he would have a meltdown if and when he discovers I’ve thrown away his random lists and odd souvenirs so that he can find his prized possessions without being distracted by clutter. That evening we took him shopping at various stores and were impressed by how well he now navigates through aisles (again better than most typical people), staying out of other people's way, and never bothering anything, just stooping or craning his neck to look at items that intrigue him.

On Thursday, Alex rolled with changes nicely when his music therapist suddenly had to cancel their session that afternoon because he was having car trouble. This was on top of his altered schedule of missing behavioral and recreational therapies last week because his behavioral therapist was on vacation. Nonetheless, Alex understood the situation and handled it well. That evening, we took him to a concert in our downtown park, something he’d been looking forward to all summer, seeing one of his favorite bands, the Spazmatics. Despite the crowds and loud music, Alex thoroughly enjoyed the 80’s music, swaying to the beat and even singing along to songs he knows.

On Friday, we were just heading out the door to go out to one of Alex’s favorite restaurants, Round the Clock in Chesterton, when our electricity suddenly went out, probably due to intense rain storms. Because we couldn’t shut our electric-powered garage door and we needed to keep an eye on our sump pump to make sure rain water didn’t seep into our basement, we decided to stay home until the power came back on. Between the disappointment of not going out to dinner and the unusual situation of being without electricity, Alex was a bit unnerved. However, he coped pretty well, trying to manage his anxiety by discussing his fears and frustrations.

When he told me he was bored because the Internet, cable, and power outage meant that he couldn’t use his iPad or watch television, I reminded him that he could read instead. As he fretted about whether he could still take a bath, I assured him that we could set up our crank-powered lantern to provide light in our windowless dark bathroom. At one point he went to use the bathroom and yelled, “It’s too dark in here!” Before I could jump up and get him a flashlight, I discovered that he had already gotten a flashlight himself. As he revealed various concerns through questions (“Will the power be off for a week?” “What if the electricity is off until midnight?’), I was able to reassure him and ease his anxiety by telling him this was only temporary and that we would be all right. A few years ago, a situation like this would have sent him into a meltdown, but he handled his fears admirably, using the coping skills he has learned in behavioral therapy.

After the power returned a couple of hours later, he seemed relieved to have things back to normal, insisting that we fix all the clocks to the correct time right away. Fortunately, he knows how to reset our trickiest clocks, leaving the easier ones for me. When he overheard Ed getting frustrated about a clock that is extremely difficult to reset, Alex showed good problem-solving skills, suggesting, “Just wait until midnight, unplug it, and plug it back in.” Not only has he learned ways to cope with frustrating situations, but he has also developed methods he can share with other people who are frustrated. Now that is real progress, and we are delighted with how well he currently copes in a variety of situations. We know that God is helping Alex overcome the obstacles of autism, especially his anxiety, and we are truly grateful for consolation that makes his life, and therefore ours, easier and better.

“When anxiety was great within me, Your consolation brought me joy.” Psalm 94:19

Managing Worry

 

Although Autism Awareness Month is officially over for another year, families affected by autism know that awareness is an everyday occurrence, not just something to consider for thirty days of the year. For our family, April was a month focused on dealing with Alex’s increased anxiety and figuring out ways to lessen his stress, which is also ours. We are blessed to have outstanding professionals who work with Alex, understand both autism and anxiety, and help us brainstorm ways to make him better. However, as Alex’s parents and round-the-clock caregivers, Ed and I know that the primary responsibility of teaching Alex how to cope falls squarely upon us. Thankfully, we are seeing improvement.

According to a research article published in April 2009 in Clinical Psychology Review entitled “Anxiety in children and adolescents with autism spectrum disorders,” 11%-84% of children diagnosed with an autism spectrum disorder also “experience some degree of impairing anxiety.” [To read this article, please click here.] Additionally, research shows that more than 55% exhibit symptoms of at least one anxiety disorder. Consequently, more than half of children with autism also must deal with anxiety.

Another scholarly article published by the Indiana Resource Center of Autism entitled “Anxiety and Autism Spectrum Disorders” notes that anxiety appears to occur more often in those with higher functioning autism. [To read this article, please click here.] Researchers suggest that those who are higher functioning appear to have a greater awareness of their environment and of how others perceive them, which could lead to greater anxiety. On the other hand, those deemed lower functioning may lack the language skills needed to express their anxiety. Nonetheless, many people with autism, no matter what their functioning level may be, need support in dealing with anxiety.

This article goes on to recommend cognitive-behavioral therapy as the best way to teach people how to cope with anxiety. Cognitive-behavioral therapy focuses on identifying negative and irrational thought patterns in which the person may overgeneralize, as well as finding new ways to think about situations. For example, when Alex becomes anxious, he will jump to the conclusion that something he wants to do will never happen, and his negative assessment of the situation makes him more anxious. By working with his behavioral therapist, he is learning to reassess circumstances in a more realistic way and to use coping skills to keep his negative thoughts from escalating into a full-blown panic attack. In addition, we must reassure him that things will be all right while never diminishing his feelings that are very real to him.

Another struggle Alex faces in addition to his anxiety is his impaired verbal skills that make expressing his feelings difficult, especially when he is upset. For this reason, he may resort to nonverbal communication, such as silently scowling, grabbing, or even hitting, to let us know he’s upset. Clearly, these behaviors are not socially acceptable, so we keep working with him to develop ways to deal with his anxiety and frustration that allow him to express his feelings verbally. I’m sure that he is tired of hearing us say, “Use your words, not your hands,” but he needs to learn better ways to cope with his anxiety.

One of the best skills Alex has learned in life is how to do research on topics he finds interesting. Not only is he adept at finding information online, like many young people his age, but he is also quite skilled at doing old-fashioned book research. Over the years, he has acquired a nice collection of reference books that he regularly consults whenever he wants to learn more about a particular subject. A few nights ago, after Alex went to bed, Ed discovered that he had been consulting one of his beloved medical books. The Mayo Clinic Family Health Book, a nearly 1500 page guide, was opened to an article that Alex had apparently been reading––“Coping with Anxiety.” Bless his heart; he was trying to figure out how to help himself. Apparently, his research proved useful because he seems better. He identified the problem, searched for solutions, and then put the helpful tips into practice. To summarize, this article recommends the following:

1. Take action. Figure out the cause of stress and deal with it.

2. Let it go. Put aside the past, make changes if you can, and [Alex underlined this] “let the rest take its course.”

3. Break the cycle. Deal with anxiety by distracting yourself with exercise or a hobby.

4. Take care of yourself. Get plenty of exercise, rest, and relaxation, and eat healthy.

5. Talk to someone. Discuss problems with friends, family, or a counselor.

In addition, we have been trying to teach Alex how to verbalize when he’s frustrated, assuring him that he can let us know when he’s upset. This week, I told him that when my sister, his adored Aunt Tammy, was a little girl, she would stomp off whenever she got upset and yell, “I’m mad, and I mean it.” Although he seemed to find this anecdote amusing as I was telling it to him, clearly he took the message to heart, as we discovered a few days later.

On Friday, Alex became worried, trying to figure out how to rearrange his precious schedule so that he could do several things he wanted to do. As Ed and I tried to help him by offering suggestions, he became more frustrated because he wanted to take charge of the situation. As he walked away from us, heading upstairs to his room, he informed us, “I’m mad!” When he got to his bedroom door, he emphasized the point by yelling down to us, “And I mean it!” Respecting his space, we left him alone, and in a few minutes of peaceful solitude in his room, Alex figured out on his own not only how he could rearrange his schedule but also how to calm himself down without any help from us. Essentially, he is learning two valuable lessons: how to cope with stress and how to be independent.

The other day when the three of us were riding in the car, Ed remarked to Alex that we are very proud of him. Unsure of whether Alex knew what he meant, he asked Alex if he knew the definition of the word “proud.” Since Alex didn’t seem certain, Ed went on to give examples of why we are proud of him, including how pleasant he is and how nicely he behaves when we take him places. Alex nodded and smiled and said, “Proud means impressed.” We were impressed (and proud) that he found the perfect synonym, but we were even more pleased that he understood what we were trying to convey to him. Although we hate that he has to struggle with autism and anxiety, we are proud of how well he copes with these issues the vast majority of the time. Moreover, we are impressed with his desire to overcome obstacles, even trying to manage them independently. While we hope that we have taught him what he needs in life, we know the real source of his strength lies in his faith in God, and that, too, makes us proud as his parents.

“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done.” Philippians 4:6

Holding On

 

After more than two dozen years of being Alex’s mom, I have learned to take most things in stride that autism has thrown at us and to see most days optimistically. However, to be honest, the day-to-day demands of caring for a child––even though he is by age an adult––with autism can sometimes overwhelm me and push me to my limits of patience. On those thankfully rare days, I allow myself to indulge in a brief pity party and then move forward, knowing that I have plenty of ways to spend my time more productively.

As I mentioned in a recent blog post, Alex has been dealing with increased anxiety lately, which means that I have also been dealing with anxiety––his and mine. While he can freely express his anxiety through trembling, trying to avoid situations that trigger nervousness, and communicating his upset by grabbing my hands as a means of getting my attention and seeking comfort, I must keep my worries about him hidden from him, knowing that my fears will escalate his. He needs for me to be calm.

Trying to figure out the source of his fears, I have mentally reviewed potential causes both physical and emotional, wracked my brain for any changes that could cause him to be anxious, and searched for possible solutions to help him feel calm and secure. In addition, I have discussed my concerns with Ed, who assures me that he trusts my judgment completely; Alex’s team of therapists, who concur with my suspicions and methods; and my mom, who sympathizes with me and eases my confusion on a daily basis. Through all of my mental sorting through my observations, research, and mother’s intuition, I have prayed for guidance and wisdom, for God to show me what I need to do to help Alex and to help me remain calm and patient as I waited for answers.

Is it yeast overgrowth in his digestive tract? Is it allergies? Is it the change to Daylight Savings Time that has disturbed his sleep cycles? Is it the wacky spring weather we’re having? Do his medications need tweaking? Is there some therapy or intervention we’re not doing that we should be?

Is he unhappy with his therapists because they know his potential and are pushing him toward attainable goals? Is he bored with the current routine? Is he trying to show independence by balking at what we tell him to do?

Is he really that upset about not being able to drive, as he lets me know when he is grounded as a consequence for poor choices? Is he picking up on my stress from trying to balance my job as a teacher and my primary role as his mom/caretaker/advocate? Is he sad that American Idol is over? Is April really, as poet T.S. Eliot wrote, “the cruellest month”?

Is he going through a healing process that is uncomfortable, the way growing pains plague children or an injury itches as it’s getting better? Is he getting better or worse? Is his mother overthinking and overanalyzing a situation that is only temporary?

A couple of weeks ago, Alex let me know that he was anxious because I refused to honor his request to cancel a therapy session. After he grabbed my hands, glared at me, and refused to talk, I found myself in one of my rare low times. Just as Alex grasps my hands in desperation, a way to let me know that he’s unhappy and can’t find the words, I needed to grab onto my mom. Telephoning her and letting pent up tears flow freely, I explained, “I’m okay; I’m just so tired and frustrated.” As she cried with me, her anxious child, she also comforted and reassured me, giving me the strength I needed to move forward. Just as I know that my mom can always comfort me, Alex relies upon me to comfort him. He knows that even when he can’t express the reason for his upset, I always understand his feelings of anxiety and will do everything in my power to help and reassure him.

Last weekend, as we were driving home after a nice dinner at a restaurant, the rain gave way to sunshine, and a beautiful rainbow appeared above the farm fields we were passing. As we gazed at the intense colors, I reminded Alex of the rainbow’s significance, telling him, “Rainbows remind us that God always keeps His promises.” Alex smiled and seemed to take this symbolic appearance to heart.

Other than a few occasional anxious moments, Alex is thankfully doing better this week. In fact, he shows signs of progress, not just in dealing with his anxiety, but also in his willingness to do things that would venture outside his typical comfort zone. For example, on Wednesday, when his peer companion had to cancel their session suddenly due to illness, Alex eagerly accepted a spontaneous change of schedule with an offer to visit my parents and thoroughly enjoyed his time at their house. In addition, he has been excited about being able to go outside, something he sometimes avoids, probably due to sensory overstimulation, and has enjoyed kicking a football in our backyard. Yesterday, we took him to a university women’s softball game, something he had been looking forward to for weeks, and he had a great time.

Along with the easing of his anxiety, Alex has also shown promising signs of progress. For example, we have noticed that he has been speaking more clearly at a more audible volume and in longer and more complete sentences. Essentially, he seems to be having a language breakthrough right now. Also, his eye contact has been especially good this week. He often comes running to tell us something that he has seen on television or read online or in a book, eagerly and clearly relating something he has discovered, all the while looking directly at us. Perhaps my theory of the itching before the healing wasn’t too far off, after all.

This recent return of anxiety has reminded us that Alex’s progress is not linear; he must go through ups and downs to get to where he needs to be. When those trying times ease, we are thankful and look for the blessings that inevitably follow. In the meantime, we continue to pray for his complete healing, and until that blessed event happens, we hold his hands literally and figuratively, reminding him that we will never allow him to fall and that God always keeps his promises.

“Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep His promise.” Hebrews 10:23

Dealing with the Unpredictable: Anxiety and Autism

 

Yesterday I ran across an interesting article explaining connections between autism, anxiety, and sensory sensitivity. This week, Ann Griswold’s article “Uncertainty drives anxiety, sensory issues in autism,” in Spectrum (April 8, 2016) highlights recent research on this topic. [To read this article, please click here.] According to new research, fear of the unknown triggers anxiety and sensory sensitivity issues often found in autism. Moreover, children with autism have difficulty predicting what will happen in situations, causing them to become easily overwhelmed.

Studies have shown that up to 84 percent of children with autism have high levels of anxiety, and up to 70 percent have some form of sensory sensitivity. Research suggests that overreacting to sensory stimuli causes anxiety for people with autism. Under the direction of Elizabeth Pelliano, professor of psychology and human development at the University of London, researchers studied the relationship between anxiety, sensory issues, and difficulty in predicting future events found in children with autism. Their findings were recently published in the Journal of Autism and Developmental Disorders.

As Dr. Pelliano notes, “Autistic children want to have control over their environment, to make it more predictable.” Consequently, researchers suggest that teaching children with autism to use past experiences in order to predict future outcomes may help ease their anxiety and their sensory issues. In studying children with autism, researchers noted interaction between the three factors––anxiety, sensory sensitivity, and impaired prediction skills––but were uncertain which was the initial trigger.

For example, uncertainty about what might happen could cause anxiety that would make sensory overstimulation, such as loud noises, seem more threatening. On the other hand, uncertainty could cause the senses to be hyperaware in an attempt to protect oneself, leading to greater anxiety. In a third proposed scenario, sensory sensitivity could create uncertainty about an unpredictable environment, causing anxiety. Essentially, researchers are still determining which factor triggers the other two. Nonetheless, by improving prediction skills, perhaps sensory issues and anxiety can be eased in children with autism, giving them a greater sense of control.

Additional research cited in this article refers to predictive impairment in autism noted by Pawan Sinha, professor of vision and computational neuroscience at the Massachusetts Institute of Technology. On February 3, 2015, Spectrum published an article by Dr. Sinha and his associates entitled “Autism as a disorder of prediction in a ‘magical’ world” in which he discussed how children with autism often become overwhelmed in an unpredictable world. [To read this article, please click here.]

Describing this “magical world” theory of autism, Dr. Sinha explains that magic relies upon the element of surprise and unexpected outcomes. However, for children with autism, they are often unpleasantly surprised because they have trouble predicting what will happen, overlooking important clues that could help them prepare for the outcomes. Thus, the world seems chaotic to people with autism. He also suggests that repetitive behaviors frequently seen in autism are compensatory behaviors, a way to try to take control when they feel out of control. Although the usual intervention for children with sensory issues is to minimize their exposure to those stimuli that upset them (such as wearing headphones to minimize noise or sunglasses to ease light sensitivity), he recommends emphasizing the predictability of sensory triggers so that children can be prepared and not taken by surprise.

Both of these research studies hold particular interest for me because Alex deals not only with autism but also with anxiety and sensory issues. Although he has learned to cope with his sensitivities to light, sound, and touch through auditory integration therapy and sensory integration therapy, he suffers from extreme anxiety that is treated by ongoing cognitive therapy and medication.

April always seems to be a difficult month for him, as his anxiety most often arises at this time of the year. Over the years, we have tried to determine a cause so that we could better help him deal with his anxiety. We have pondered over the effects of the time change to Daylight Savings Time, barometric changes and increased pollen counts brought by typical rainy and windy spring weather, or just dealing with cabin fever from being cooped up in the winter time. In the past several days, I have found myself dealing with migraines triggered by air pressure and spring allergies, so I suspect physical triggers are likely behind Alex’s increased anxiety.

However, we have also tried to ascertain any emotional issues that have made him more anxious. This month, we have noted his reactions of involuntary shaking, grabbing my hands for reassurance, and a newly acquired hypochondria in which he tells us we need to cancel his appointments with his therapists because he suddenly has developed assorted symptoms that miraculously disappear as quickly as they appear. In other words, Alex seems perfectly fine physically and emotionally until it’s time for his appointments with his therapists, and then he panics for some unknown reason.

Fortunately, they all understand his anxiety issues and have been supportive and reassuring in trying to help him overcome these panic attacks. His music therapist even agreed to do Alex’s therapy sessions here at home instead of having us come to his office while Alex is in this anxious phase. His behavioral therapist has decided to shift her focus from social skills to dealing with anxiety in hopes of helping Alex strengthen his coping skills so that he can take control when he feels out of control. We know how blessed we are to have professionals who are not only helping us deal with Alex’s anxiety but who also genuinely care about him and want to help him.

While we would like to take away all the sensory stimuli and unpredictable situations in life that upset Alex, we know that would be impossible. Instead, we, along with his therapists, try to help him cope with his anxiety by teaching him how to take control of his emotions, especially when he feels out of control in situations that overwhelm him and take him by surprise. Along with developing his coping skills, we understand his need for schedules and routines, and we do our best to prepare him for potential outcomes. In a world that often seems unpredictable, we want him to know that he can always count on us. More importantly, we have taught him to develop a personal faith so that he knows he can always rely upon God in the midst of any storm. While we don’t know what the future holds, we know who holds our future—the One who can give Alex peace until healing takes away autism and the accompanying anxiety.

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” Philippians 4:6