Sunday, November 19, 2017

National Family Caregivers Month

 
November is National Family Caregivers Month, and for many parents of children with autism, round-the-clock caregiving continues day after day, month after month, and year after year––long after those children become adults. Because society is not prepared to deal with the thousands of adults with autism who require special care, the vast majority of these adults with autism depend upon family members to take care of them. Those adults with autism unable to perform daily living tasks independently, such as grooming and preparing meals, rely upon family caregivers to meet those critical basic needs. Although support personnel, including therapists and respite care providers, offer assistance, the bulk of care falls upon family to assure that the adult with autism is kept safe, happy, and content.

The Caregiver Action Network provides a helpful guide online, “10 Tips for Family Caregivers,” that may assist parents caring for their children with autism. [To read this article, please click here.] These excellent suggestions are summarized as follows:

1.  Seek support from other caregivers.

2.  Take care of your own health

3.  Accept offers of help and suggest specific things people can do to help you.

4.  Learn how to communicate effectively with doctors.

5.  Take respite breaks.

6.  Watch out for signs of depression and don’t delay getting professional help.

7.  Be open to new technologies that can help you care for your loved one.

8.  Organize medical information so that it’s up-to-date and easy to find.

9.  Make sure legal documents are in order.

10. Give yourself credit for doing the best you can in one of the toughest jobs there is!

Two of these tips deal with organization, specifically organizing medical information and legal documents, and I have found this to be very important. I have a portable file box organized with important documents dealing with insurance, medical information, Social Security, and other paperwork for Alex we may need. When we were recently successfully pleading our case to keep him on our family health insurance policy, finding necessary documentation was simple because I had all of this information easily accessible in the file box.

In addition, I have organized two portfolio folders of information: one for his services, such as behavioral and music therapy and respite care, and one for medical information. These folders are very helpful during quarterly meetings with his support staff and whenever we take him for medical tests or doctor appointments. In the medical folder, I keep updated lists of his medications and supplements, as well as a list of all of his health care providers and their addresses and phone and fax numbers, which comes in quite handy. Also, I keep a copy of his legal paperwork naming us as Alex’s legal health care representatives, which has proven extremely valuable over the past few years so that we have legal power to make decisions regarding Alex’s health care and to discuss medical issues with his doctors now that Alex is an adult. Of course, the tip about communicating effectively with doctors is also critical because we must advocate for our children so that they get the best health care possible. Often, this requires medical research ahead of time so that we know as much as possible about our children’s condition. Furthermore, many doctors do not know much about autism, and as parents, we may need to teach them things they never learned in medical school to ensure our children receive proper medical care.

Along with organization, seeking help is another common theme in this list of useful suggestions. Finding others who are in similar situations is valuable, not only because they can provide empathy, but also because they often can offer excellent suggestions and recommendations. When Alex was younger, I belonged to two online parent support groups where I learned a great deal about autism and developed friendships with autism moms that have lasted through the years. Currently, I belong to three Facebook groups for parents of special needs children who live near me, and we often share ideas, recommendations of professionals, and tips to help each other care for our kids.

While accepting offers of help is a great idea, it’s one that I am personally not good at doing. Never wanting to bother other people and being too proud to ask for help, I try to be as independent as I can. However, I am thankful that my husband and mother are incredibly supportive and willing to step in if needed. Recommending that caregivers suggest specific things others can do to help is a terrific tip because people often want to help but don’t know what to do. While parents may not feel comfortable having others watch their children with autism, friends and family could help by running errands, picking up groceries, or even simply praying for them. If good respite care is available, parents can use this resource to give themselves a break from caregiving and to allow their children to engage with a caregiver other than their parents.

Another aspect of help is new technology. One of the most valuable newer devices is the iPad, which offers many apps useful to people with autism. Some of these allow nonverbal children and adults with autism to communicate easily for the first time, which is valuable for them and their caregivers. Getting Alex an iPad Mini for Christmas a few years ago was one of the best gifts we ever gave him. He frequently listens to music on it, which relaxes him, and he satisfies his curiosity by looking up dozens of questions every day. Moreover, he can entertain himself by watching videos he enjoys and by playing games.

Finally, another theme found in these tips is caregiver self-care. We need to take care of our children’s parents so that we can be physically, mentally, and emotionally at our best to take care of them. Knowing that I may need to care for Alex for a long time, I have been making changes to ensure I’m as healthy as I can be. Certainly, caregiving is quite stressful, and at times, I have needed to deal with my own anxiety so that I don’t increase Alex’s anxiety. By eating healthier, taking vitamins, getting as much sleep as possible, making time to do things I enjoy, and finding emotional strength through my faith in God, I am better equipped to take care of Alex. Although I admit that I have trouble following the last tip about giving myself proper credit because I am my own worst critic, I am blessed that Ed and my mom constantly encourage me with praise for my efforts. When I doubt how I’m handling a situation regarding Alex’s care, they reassure me that I’m doing the right thing. Perhaps one day I will see myself as competent as they assure me I am.

Caregiving for a family member requires energy, devotion, and unconditional love; however, organization, help from others, and self-care can make this crucial task easier. While other people may not realize how much we do in caring for our loved ones on a daily basis, we know that we are serving God as we love and care for those He has entrusted to us.

“Care for the flock that God has entrusted to you. Watch over it willingly, not grudgingly––not for what you will get out of it, but because you are eager to serve God.” 1 Peter 5:2

Sunday, November 12, 2017

Proclamations

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

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

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

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

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

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

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

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

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

Sunday, November 5, 2017

Waiting Time

 
Around here, we live by the clock, the calendar, and the schedule. For Alex, running on time, knowing what day it is, and being prepared for activities ahead are crucial to his daily existence. If not for the numerous clocks throughout our house and his wristwatch, calendars easily accessible, and his daily schedule posted on the refrigerator, Alex would become extremely anxious waiting for whatever was next. To be honest, he gets that from me, who also thrives on the comfort of clocks, watches, calendars, and schedules.

In fact, we can tell when Alex is more anxious because he will consult his beloved time keepers more often, making certain that everything is running on time and making sure he knows what’s happening next. Unfortunately, life doesn’t always go exactly as planned––people may run late, appointments may change, and a power outage might require the resetting of the electric clocks.

Sometimes reality doesn’t jive with our expectations, which can lead to frustration and disappointment. For example, as I changed our calendars from October to November last week, I realized that Alex’s loss of appetite has now lasted six months. When he began eating fewer foods in May and self-limiting his diet that had always been excellent to only a few items, I thought this phase would last only a few days, maybe a few weeks.

By the end of May, Alex still had not returned to his usual varied diet and healthy appetite, so we took him to the doctor, who diagnosed him with thrush. Certainly, the pain thrush can cause in the mouth and throat would explain Alex’s sudden resistance to eating, and we thought that the anti-fungal medication would clear up this yeast overgrowth and make him want to eat again within a few weeks.

However, this bout of thrush has been a doozy, and two more doctor visits and more rounds of anti-fungal medication were warranted. So tenacious is this yeast overgrowth that his doctor has him on maintenance doses of medication twice a week through February. Even though his mouth looks better and the secondary indicators of yeast overgrowth––dandruff and acne––have improved, we still occasionally see some behaviors associated with thrush, namely irritability and increased anxiety. Moreover, Alex still hasn’t returned to his normal eating habits.

Currently, he drinks smoothies made with Rice Dream nondairy ice cream, coconut milk, strawberries, and protein powder for breakfast. For lunch he eats applesauce and raspberry coconut milk yogurt. For dinner he eats applesauce and scrambled eggs with spinach and herb seasoning. For an evening snack he drinks a lemon Italian ice and another strawberry smoothie. While this makes meal planning for him simple since he’s basically eating the same things he’s eaten for months, we would prefer that he return to his previous diet where he ate nearly everything except popcorn. Moreover, one of his favorite things to do was to eat at various restaurants, but his limited diet has kept him from this favorite family pastime.

On Wednesday, realizing that another month has passed without Alex’s appetite improving, I felt frustrated, disappointed, and overwhelmed––three emotions I try to avoid. Why isn’t Alex’s appetite back to normal after all these months? Why won’t this thrush go away for good? Why does everything seem to take so long? What else do I need to do to make him better? As these questions raced through my mind, I could only answer the last one. I remembered the phrase I hear Alex say so often: “Wait and see.”

As Alex’s mom and advocate, I constantly seek ways to make him and his life better. However, sometimes I must remember that despite my need to control and offer helpful advice, God has this all figured out without my well-meaning help. Unlike me, God doesn’t need to read all the latest research in autism; He created the universe. While I’m impatiently waiting, God has already set the appointed time. What God has planned for Alex is greater than anything I could imagine, and healing will allow Him to show His glory. I just need to have the same trust and faith in Him that Alex does.

While six months can seem like a long time when waiting for something to happen or change, in reality, it’s not that long. Perhaps another six months will pass before Alex feels like eating more foods; we’ll have to wait and see. Perhaps tomorrow he’ll wake up and ask for his favorite food, shrimp, and devour it happily after not having eaten it for more than half a year. I don’t know. As we change our clocks back to Standard Time today, I’ll be praying that, like Daylight Savings Time, this time of illness was a summer thing to be put behind us. We will wait and see.

“For everything there is a season, a time for every activity under heaven.” Ecclesiastes 3:1

Sunday, October 29, 2017

Employment and Autism

 
In the past few weeks, Ed and I have been trying to make certain Alex remains on our family health care insurance policy after he turns 26 in December. Because he has autism, he should easily qualify as a disabled dependent eligible for continued coverage. After various phone calls, emails, and a marathon meeting Ed had with his employer’s human resources department head, everyone agrees that Alex should be able to remain on the policy with enough proof provided.

Digging into my carefully organized files, I easily found four documents indicating the nature and scope of Alex’s disability. All of these reports came from assessments made after Alex turned eighteen, so they were recent and addressed his disability as an adult. Despite submitting the report from a psychiatrist, another from a psychologist, the confirmation from Social Security that he qualifies for disability payments under federal guidelines, and a detailed report from the state of Indiana explaining the impact autism has on Alex’s daily life thereby qualifying him for state autism support services, the insurance company needed another form completed.

For the top half of the form, we provided typical information regarding name, address, birthdate, and policy number. However, the focus was clearly upon Alex’s employment history, which is nonexistent because of the obstacles autism presents for him. The bottom half of the form was to be completed by his primary care physician and focused on confirming his disability diagnosis and its impact on potential employment. Thankfully, Alex’s doctor clearly and concisely explained why Alex is not able to hold a job now nor in the foreseeable future. Noting impaired language skills and limited daily living skills, his doctor made evident Alex’s weaknesses that currently make holding a job impossible. Hopefully, this completed form will satisfy the insurance company’s requirements.

While we would certainly prefer that Alex be able to live independently and pursue a meaningful career, we know that he relies upon us to take care of his needs, including making sure that he has good health insurance. He is not alone in being an unemployed adult with autism, however. Statistics indicate that only 58% of adults with autism who have completed high school ever wind up holding paying jobs. Even those who do successfully hold jobs often have problems with organization and dealing with co-workers. This trend may be starting to change, though.
An article written by Neil Parmar published online last week in Entrepreneur entitled “Why Microsoft, Chase and Others Are Hiring More People With Autism” touts the value of employees with autism. [To read this article, please click here.] Specifically, people with autism often bring creativity, attention to detail, and technical skills that employers value, according to the article. In fact, approximately fifty U.S. companies currently have a majority of employees with autism.

A leader from accounting and professional services firm EY, Hiren Shukla asserts the value of workers who have autism, stating, “We’re not doing this as a diversity and inclusion program; it’s actually filling a very specific business need.” This sentiment is echoed by banking company J.P. Morgan Chase that has indicated traits found in autism are “ideal assets in the workplace, particularly in industries like tech and engineering.” Moreover, software corporation Microsoft describes workers with autism as an “untapped pool of talent.” This recognition of the skills employees with autism can bring to their companies gives hope that more adults with autism can find meaningful employment that benefits them and their employers.

Despite their unique talents, people with autism may require additional support to be successful in their jobs. This article describes the development of social service agencies and nonprofit organizations to help train and place adults with autism in jobs and to provide ongoing support. In addition, state vocational rehabilitation agencies can assist adult employees with autism by providing job coaches and arranging transportation to and from work. Some innovative companies have recognized the special needs of their employees with autism as well as their value and offered support in the forms of job coaches and financial planners, and even giving nutritional advice. This genuine caring for their employees should be a model for other companies willing to hire adults with autism.

Although the current unemployment figures for adults with autism can be discouraging, the success some companies are having in hiring these people with a unique skills set gives hope that more adults with autism will be able to find jobs someday. As more and more children with autism become adults with autism, society needs to be more creative and find ways to make them economically independent and valued members of the workforce. Perhaps someday parents won’t have to fight to keep their adult children on their health insurance plans because they are unemployed due to their disability.

For Alex, I have hope that instead of focusing upon his impaired language, fine motor, and social skills, someday he will be valued for his phenomenal memory; his keen skills in math, reading, and proofreading; and his inquisitive mind. Even better would be that he is recognized for his earnestness, his enthusiasm for things he loves, and his sweetness that endears him to those who see past the obstacles autism has imposed on him to the special soul God created him to be.

“Work willingly at whatever you do, as though you were working for the Lord rather than for people.” Colossians 3:23

Sunday, October 22, 2017

Pet Pat Phrases

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

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

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

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

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

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

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

As Alex has gotten older and his language his improved somewhat, he has learned that he can convey not only his observations but also his thoughts and feelings. While these phrases may be not as clear as they could be, we can usually figure out his intended meaning. When he asks if he can do something, he usually means that he wants to do that activity. On the other hand, if he adds “or not” to the question, he doesn’t really want to do that activity, but he’s testing to see if we would allow him to do so. We know this because if we ask him if he wants to do that, he usually tells us no.
In his cry of frustration the other day about not being able to drive, we knew what was wrong because we have heard him complain about this before. He wanted to go someplace, and we told him we would take him later. Knowing that most people his age can drive bothers him because he realizes that he lacks the independence he should have. As parents, we understand his upset because we, too, hate that autism has prevented him from doing typical things. We wish we could hand him the car keys, tell him to be careful, and send him out into the world to do what he wants. However, we are grateful that unlike many adults with autism, Alex can speak and share what he’s thinking. As we pray for his continued progress, we hope that someday Alex might be able to say clearly whatever he wants to say and to drive wherever he wants to go.

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

Sunday, October 15, 2017

Mental Health Concens and Autism

 
Last week, Stephen Grcevich, M.D. posted an important and insightful article online at the Key Ministry website entitled “The Mental Health Crisis Among Persons with Autism.” [To read this article, please click here.] Dr. Grcevich adeptly summarizes research published last month in the Journal of Autism and Developmental Disorders regarding the link between mental health issues and autism. As if the challenges of autism were not enough, many people with autism often struggle with mental illness, as well.

The research Dr. Grcevich cites used government administrative health data and focused upon young adults 18-24 years old in Ontario, Canada. These young adults were divided into three groups: those with autism spectrum disorders, those with developmental disabilities, and those who were typical adults. Of those adults studied who were seeking medical help, 19% of the typical people had a psychiatric diagnosis, compared to 39% of those with developmental disabilities. In even greater contrast, over half of the adults with autism––52%–-had a psychiatric diagnosis.

This study also found that the young adults with autism were twelve times more likely than their typical peers to see a psychiatrist. In addition, the young adults with autism were nearly five times more likely to obtain psychiatric services through an emergency room and more than ten times likely to be hospitalized for psychiatric conditions than their typical counterparts. Clearly, young adults with autism face psychiatric crises much more than other people their age do. As the abstract of the research article wisely concludes: “Planning for the mental health care of transitional age adults with ASD is an important priority for health policy.”

While this study examines mental health issues in young adults, another study Dr. Grcevich cites indicates that adolescents with autism also suffer from mental health disorders. This research published in the Journal of the American Academy of Child and Adolescent Psychiatry studied children with autism who were between 10 and 14 years old. This study found that 70% of these children with autism had at least one mental health condition, such as ADHD, anxiety, or depression. Moreover, 41% had at least two mental health disorders in addition to having autism. Consequently, the psychiatric issues seen in young adults in the Canadian study likely began years earlier in adolescence.

If mental health issues in children and adults with autism are not addressed or resolved, tragedy can result. In another article entitled “The suicide epidemic among high-functioning persons with autism,” Dr. Grcevich cites research regarding links between suicide, mental health disorders, and autism. [To read this article, please click here.] Specifically, he refers to a statistic from the British Journal of Psychiatry indicating that adults with autism of average or above average intelligence are nine times more likely to commit suicide than their typical peers.

In another study Dr. Grcevich references from Research in Autism Spectrum Disorders, children with autism were found to be twenty-eight times more likely to experience suicide ideation than their typical peers. Because of this startling finding, the researchers of this study concluded, “All children with autism should be screened for suicide ideation or attempts because ideation and attempts are significantly higher than the norm and are present across the [autism] spectrum.”

Speculating on reasons why people with autism can be suicidal, Dr. Grcevich offers potential reasons. He notes that people with autism are more likely to be isolated socially and lack social supports; moreover, they are often victims of bullying. In addition, people with autism may experience problems with executive functioning of the brain. This may cause them to act impulsively, have difficulty in solving problems, and impair their ability to self-regulate their emotions. Furthermore, people with autism often fixate on specific thoughts and ideas, which may be the case in suicide ideation.

From our experience of raising a child who was diagnosed with autism at age four, obsessive-compulsive disorder at age eleven, and generalized anxiety disorder at age nineteen, I believe additional factors play a part in mental health issues reaching a critical stage in children and adults with autism. First, we had a great deal of trouble finding professionals who knew how to deal with autism. In addition, we discovered that few facilities know how to address autism and mental health issues. To add to the problem, insurance companies limit mental health care treatment, refusing to pay for a reasonable amount of time needed to stabilize a person in a mental health crisis. Furthermore, the unfair stigma of mental illness may prevent some parents from seeking help for their children with autism.

As parents who had to search and struggle to get our son the help he clearly needed, we know how important dealing with mental health issues in autism is. After discovering that our son’s aggressive outbursts that made him a danger to himself and others were triggered by severe anxiety, we knew that proper medication was necessary. Although we were heartbroken to have to hospitalize him in a psychiatric ward for weeks, we know that time of treatment was absolutely crucial to his well-being and are thankful that we found professionals who were able to help us through the crisis. While we would rather forget those turbulent times, we know that we must share our story in hopes that other parents would seek help for their children and know that they are not alone.

In concluding his article, Dr. Grcevich emphasizes the need for churches to support families whose children have autism, and I completely agree with him. However, in the absence of a church family who offers support, parents must remember that God will always support them through the trials of autism and mental illness and offer them hope for a future of healing and happiness. Though we carry scars from our battles, I know God has brought us through those struggles better and stronger and filled with faith and hope that Alex will continue to get better as a testimony to God’s goodness.

“From six calamities He will rescue you; in seven no harm will touch you.” Job 5:19

Sunday, October 8, 2017

Voice Perception and Autism

 
Last week Spectrum published a fascinating online article written by Nicholette Zeliadt regarding research on how voices of people with autism are perceived. [To read this article, please click here.] The article entitled “‘Tone’ of phrase may differ in autism, but meaning is clear” summarizes research by Dr. Noah Sasson and his colleagues at University of Texas at Dallas that was published in Autism Research on August 17, 2017. Noting that people with autism often use unusual speech patterns and have difficulty with social skills, the research examined how listeners perceive these differences. This study focused upon effects of “emotional prosody,” the cues that convey emotions and make speech different from written text, such as tone of voice and volume.

To test perceptions of speech patterns, the researchers had thirty men of average or above average intelligence­––15 typical men and 15 men with autism––make audio recordings of five phrases with five different ways of saying those phrases. These phrases, such as, “I can’t believe this” could convey a variety of emotions, depending on the tone of voice. The phrases were said with the following emotions: happy, sad, angry, interested, and neutral. Afterward, the tones were analyzed for volume, pitch, and how long it took to say them. The men with autism were louder, had greater pitch variety, and took longer to say these phrases with emotion, but were the same volume, pitch, and length in the neutral tone as the typical men.

Later, a group of individuals (22 people with autism and 30 typical people) listened to these audio recordings and identified the emotions conveyed by the prosody of each statement. Not surprisingly, the people with autism had more difficulty identifying the emotions conveyed by each statement. However, all listeners were better at correctly identifying the emotions conveyed by the speakers with autism, who used exaggerated volume and pitch. Despite their unusual prosody, the men with autism could clearly convey the emotions they were communicating to others.

While the typical listeners were able to identify the emotions the speakers with autism conveyed, they perceived their speech as less natural and formed unfavorable impressions of them. These negative reactions correlated with an earlier study this research team did in which they showed typical people videos of people with autism speaking. After watching these videos, the typical people indicated they were unlikely to want to interact with people with autism. However, when the typical people only read transcripts of what the people with autism said, they did not form these negative biases. Consequently, what the people with autism said was less important than their speech patterns, which made typical listeners quickly form negative first impressions of them. Moreover, the researchers found that the typical people’s negative perceptions of people with autism were quite strong and did not change with increased exposure; they understood what the people with autism were saying, but they could not get past the unusual ways they spoke.

After seeing the negative ways typical people react to how people with autism communicate, the researchers’ goal is to find ways to minimize negative biases against people with autism. They hope that the more typical people understand people with autism, the more positive their perceptions of people with autism might be. In addition, the decrease of bias could improve social experiences for people with autism as the likelihood for interaction with typical people could improve. The research team plans to do evaluations of people with autism and typical people getting to know each other in person to find traits that make positive judgments and interactions possible.

Ironically, people with autism are often said to have poor social skills, yet they often seem to lack the prejudices found in typical people that negatively impact social interaction. While Alex finds people’s voice qualities fascinating and likes what makes them unique, others may judge him negatively because of his halting speech and emotional prosody affected by autism. I have often said that Alex is very perceptive about people and is intuitively drawn to those he sees as kind; perhaps he senses the bias of those put off by his style of speaking. Fortunately, he doesn’t seem bothered by those who would rather not engage with him, and he simply gravitates toward those who do see past his unique way of speaking to the clever mind and pure heart he possesses.

As the mother of a young man with autism, I found the results of these studies disappointing that many people have prejudices against people with autism because of the way they speak. However, I can also objectively say that before I had a child with autism, I probably would have reacted the same way: uncomfortable with those who spoke in unusual ways. As a teacher, I witnessed how some typical students reacted negatively to their peers with autism and tried to teach them to be compassionate. Yet, human nature sadly sometimes causes us to judge those different from us as being less. Truly, I hope that the researchers can find ways for people with autism to interact positively with typical people to develop greater understanding. Not only will people with autism benefit from more opportunities to develop their social interactions, but typical people could also benefit from all they can learn from people with autism.

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

Sunday, October 1, 2017

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

Sunday, September 24, 2017

Wasted Worry

 
In May, Alex mysteriously changed his eating habits. Because he has always had a good appetite and a willingness to eat almost anything, we became concerned when he seemed to lose interest in eating foods he had previously loved. Even more concerning was the weight loss that accompanied this change of eating habits. Consequently, we took him to the doctor, who diagnosed him with thrush, yeast overgrowth in his mouth and throat that seems to plague Alex at regular intervals. Since his mouth and throat were sore, apparently only cool and smooth foods, such as coconut milk yogurt, Rice Dream ice cream, applesauce, and pureed fruit appealed to him. Moreover, he told us that some foods he had previously liked now tasted bad, which apparently was a side effect of the thrush.

After prescribing a week of the anti-fungal medication Diflucan, the doctor told us that if Alex’s appetite continued to be affected, he might want to do an abdominal CT scan to determine whether he may be having gall bladder issues. In addition, he wanted to see him again in a few weeks to monitor his weight and see if the thrush improved. The medication did help the thrush, but his appetite was still not back to normal. Fortunately, by encouraging Alex to eat foods that did appeal to him, he was able to gain back some of the weight he had lost.

When we returned to the doctor in June, he was pleased that Alex was doing better and gaining weight. Since Alex was improving, he didn’t think the CT scan was necessary, but he indicated that if Alex continued to have thrush outbreaks, he may want to refer us to an ear-nose-throat specialist who could better view what was going on in Alex’s upper digestive tract. While I was not thrilled with the possibility of Alex needing a scope of his upper GI tract, I trusted the doctor knew what was best for him and hoped that this test would not be necessary. In the meantime, he prescribed another round of Diflucan to address the residual thrush and wanted us to return in three months to check Alex’s progress.

Over the summer, Alex seemed to be getting better, as the signs of thrush improved. When Alex has thrush, his anxiety and OCD increase, and he also has acne breakouts and terrible dandruff. Fortunately, all of these symptoms subsided, and his appetite, while not back to normal, improved. Because he was doing fairly well, his psychiatric nurse practitioner took him off one anti-anxiety medication and reduced another. He adapted to these medication changes overall quite well, which was encouraging. However, he seemed to have some increased sensory issues, such as covering his ears when he heard loud noises. Perhaps his eating habits were affected, as well, with intensified tastes, smells, textures, and even sounds of foods. While we had seen some improvement with his willingness to eat a greater variety of foods, we saw a setback recently where he reverted to eating only the cool and smooth foods he preferred in May.

Knowing that we were taking him back to the doctor last week, I began to panic that the doctor would want more tests run on Alex. In case his eating habits were more mental than physical, I decided to try a new method: offering him a reward for eating. All summer long, we have been low key about his eating habits, not wanting him to feel anxious and not putting pressure on him. However, in trying to spare him medical procedures, I was willing to push him a bit to see if he might eat more. Last week, I told him that if he would eat his dinner, he could get an Italian ice at Fazoli’s for dessert.

The first two nights, the plan worked well, as he ate dinner and earned his reward. The third night, however, he became agitated trying to comply so that he could get the dessert he really wanted. The next night, he began shaking before dinner ever started, fretting about the task of eating, and I knew we needed to abandon this plan. Instead of pushing him to eat a variety of foods, I fixed him foods I knew he could eat, and he was much calmer. Apparently, his eating habits were not just a matter of stubbornness on his part, and I felt bad about pushing him to eat, even if I had his best interests at heart.

In the days before we took him back to the doctor on Wednesday, I fretted about what might be ahead of us, just as Alex had fretted about eating a few days earlier. As I worried about possible medical procedures Alex might need, or even worse, what terrible illnesses might be responsible for his lack of appetite, I knew I needed to pray and find peace. Whatever God had planned, He would see us through, just as He always has.

When Alex went to the doctor on Wednesday, the doctor was pleased with Alex’s weight gain and fortunately did not feel the need to run any tests. Unfortunately, he diagnosed Alex with another case of thrush, which would explain the decline in his appetite that had been improving a few weeks ago. The doctor also thought that the decrease in anti-anxiety medications could cause sensory issues that would impact his appetite, as well. He prescribed ten days of Diflucan followed by weekly doses to keep the thrush at bay and told us to call him in two weeks and let him know how Alex is doing.

Fortunately, this case of thrush seems much milder than the ones Alex had earlier, as his symptoms are less intense and don’t seem to be bothering him too much. Thankfully, we are already seeing improvements in just the few days Alex has been on the anti-fungal medication. We are also pleased with how the doctor is handling Alex and have confidence that he is doing what is best and genuinely wants to help Alex get well. While we hope and pray that Alex’s appetite will return to normal soon and that the thrush will disappear permanently, we know that God has a plan for Alex’s healing and that we need not worry about the details. Instead, we just need to wait and to trust that in the end everything will be all right.

“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

Sunday, September 17, 2017

The Inflamed Brain

 
Obsessive-compulsive disorder is defined by the Mayo Clinic website as a common condition affecting more than 200,000 people in the U.S. per year. Those with OCD, as it is more commonly known, tend to focus on thoughts and fears that become obsessions and then attempt to deal with these upsetting thoughts by engaging in compulsive behaviors.  Statistics indicate that OCD affects approximately two percent of the general population. However, various studies show that the rate of OCD ranges from eight to thirty-three percent of those with autism––much higher than the general population.

When Alex was eleven, he was diagnosed with OCD and began taking the SSRI medication Prozac to alleviate the symptoms. In his late teens, Prozac suddenly stopped addressing his OCD symptoms, leading to extreme anxiety, and he was placed on another SSRI, Zoloft, which he currently takes daily. His primary obsession is time, and he needs to know what time it is at all times and requires a watch and schedule and calendar to keep track of time. Although medication and behavioral therapy have helped ease some of the symptoms of OCD, such as frantically searching for a clock every few minutes, he still can become unnerved if his schedule changes or if he can’t find his wristwatch.

Because of the link between autism and OCD, I found a recent article on OCD especially interesting: “Brain Inflammation Discovered in Those With OCD” published online in Neuroscience News.com on June 21, 2017. [To read this article, please click here.] This article focuses upon research published on the same date in the journal JAMA Psychiatry. The senior author of the study, Dr. Jeffrey Meyer, is the Head of the Neuroimaging Program in Mood and Anxiety at the Centre for Addiction and Mental Health (CAMH) Campbell Family Mental Health Research Institute in Canada.

This study used PET scans of the areas of the brain known to function differently in OCD, and dye was used to measure the activity of immune cells (microglia) found in inflammation. This research discovered for the first time that brain inflammation is much higher in people with OCD than in those who do not have OCD. Specifically, those with OCD had greater than 30% higher brain inflammation. Noting the significance of this novel research, Dr. Meyer stated: “This finding represents one of the biggest breakthroughs in understanding the biology of OCD and may lead to the development of new treatments.”

While inflammation and swelling help the body to heal from infection and injury, this immune system response can also be harmful. In addition to discovering the link between brain inflammation and OCD, Dr. Meyer also found in an earlier study that brain inflammation is elevated in people with depression. Moreover, some researchers have suggested that autism is linked to inflammation of the brain and nervous system. Consequently, the link between mental health disorders and brain inflammation indicates the need for new methods and medications to treat these conditions.

Currently, the most commonly used medications for OCD include SSRI medications to ease depressed mood and anxiety, anxiolytic medications to relieve anxiety and tension, and antidepressant medications to prevent and relieve depression and elevate mood. However, these current medications do not help one third of those dealing with OCD. This study indicates that additional research needs to be done to develop low-cost tests, perhaps in blood markers, to identify those OCD patients with brain inflammation who would respond to treatment addressing the inflammation. Additionally, the study suggests that medications used in other disorders for brain inflammation might be helpful in treating OCD.

Another important discovery in this research is the connection between brain inflammation and stress response. Approximately ninety percent of those with OCD engage in compulsive behaviors in attempts to lessen their obsessions. Those who tried to avoid engaging in compulsions experienced great anxiety and were found to have the highest levels of inflammation in one brain area. Consequently, stress appears to play a role in brain inflammation. As Dr. Meyer notes, “Work needs to be done to uncover the specific factors that contribute to brain inflammation.”

Although more research needs to uncover sources and potential treatments for brain inflammation, this groundbreaking work by Dr. Meyer and his associates gives real hope for those struggling with OCD, depression, and other conditions impacted by neuroinflammation, such as autism. Not only might they find better ways to treat the inflammation in the brain that impacts thoughts and behaviors, but they also may be getting close to finding the causes of the inflammation, which may eventually lead to a cure. As I follow research like this and continue to pray for a cure for autism, I wait with anticipation for the day that Alex will be completely healed.

“Lord, my God, I called to You for help, and You healed me.” Psalm 30:2

Sunday, September 10, 2017

The Mighty Pen

 
Like me, Alex is an avid list maker. While I typically write lists of things I need to do or buy, Alex makes lists of dates, facts, and numbers he wants to remember. Over the years, his lists have taken varied forms: individual pieces of paper scattered throughout the house with his notes, legal pads filled with jotted assorted information, and his current preference, classic marble cover composition books filled with his mostly illegible scrawl. Certainly, the composition books are a neater way to store his various lists, and I prefer them to some of the other alternatives he’s chosen at times, including using his bedroom walls to record dates or his leg as a young boy to record pi digits because he couldn’t find paper, as he told me. Through it all, he has relied upon his trusty Bic ballpoint pens that will write on nearly any surface, as we have discovered.

Although Alex has his own iPad and Chromebook, he still makes his lists the old-fashioned way, writing them by hand. Even though he can type quite rapidly and accurately, he chooses the more labor-intensive pen and paper method. Because of his poor fine motor skills and hand tremors caused by medication to ease anxiety, Alex’s handwriting is barely legible. A casual reader could make out some numbers and a few letters, but overall, Alex’s writing looks more like an earthquake seismograph than anything else. Apparently, he can read most of what he writes, though, and perhaps he likes that only he can decipher what he’s recorded in his notebooks.

As a student who learned to take notes by hand because computers were not available, I figure that my preference for writing lists by hand shows my age––someone who grew up before the technology revolution of this century. Although I’ve tried taking notes on my iPad or Chromebook or laptop, I still prefer to write my notes by hand, often edited with crossed out words or arrows not needed in computer-generated text. Besides the familiarity of doing this task in the way I was taught to do it, I’ve also suspected that I remember things better that I have written by hand.

As I always told my students, writing notes sends various inputs to the brain: hearing what was said, seeing what was written, and the feeling of the hand motion in writing. As students began using Chromebooks to take notes, I noticed that they seemed to be disconnected from what they were typing, and I questioned whether they were remembering information as well as they did when they wrote notes by hand. Recent research confirms my suspicions that writing notes by hand is more effective than typing them on a keyboard.

In an online article in Scientific American published on June 3, 2014, psychology professor Cindi May describes research regarding the impact of writing notes by hand upon memory and depth of understanding. This article, “A Learning Secret: Don’t Take Notes with a Laptop,” explains research at UCLA and Princeton University by Pam Mueller and Daniel Oppenheimer. [To read this article, please click here.] In their studies, they compared how students performed on tests, depending on whether they took notes by hand or on a computer.

Because the students could type faster than write by hand, those who used computers took more notes, often copying verbatim what was said. While this process may seem advantageous, the researchers found that this method resulted in less retention of the material because it was a mindless task. Even though writing notes by hand is slower, the students had to “listen, digest, and summarize” the material presented, leading to better retention and comprehension of the material. As Professor May notes, “While technology allows us to do more in less time, it does not always foster learning.” She goes on to state that learning is more than simply taking in and giving out data. Emphasizing the value of taking notes by hand, she concludes, “If we want students to synthesize material, draw inferences, see new connections, evaluate evidence, and apply concepts in novel situations, we need to encourage the deep, effortful cognitive processes that underlie these abilities.” In other words, to develop higher levels of thinking, the slower and lower technology of writing by hand appears to be the best way.

As I watch Alex sitting with one of his many composition notebooks, pen poised to write down things that interest him, I realize that he knows the best way to learn and remember. Perhaps his amazing ability to remember statistics, dates, and facts is related to his insistence upon jotting them in his own handwriting, making meaning of seemingly random details and building connections in his mind. Moreover, he rarely consults these notebooks as reference materials, so I suspect that just the act of writing what he wants to remember achieves precisely that purpose for him because he does have a phenomenal memory of those things he has seen and heard and written down.

Although I want to help him develop his actual handwriting skills to make them more legible not only to others but also to Alex, I don’t want to mess with success. Apparently, his hieroglyphics have meaning to him, as evidenced by his ability to remember what he has written. In his intuitive way, he has discovered that the best way to make sense of a world that overwhelms him at times is to grab a notebook and a Bic pen and jot down data that he wants to remember. Moreover, he maintains his love of learning and has discovered the best way to develop the amazing mind God has given him. As Alex’s mom and teacher, I’m quite proud of my prized pupil.

“Write down what you have seen––both the things that are now happening and the things that will happen.” Revelation 1:19

Sunday, September 3, 2017

Picky Eater

 
For nearly four months now, Alex has been limiting himself to what I have dubbed “the cool and smooth diet.” Back in May, he had a mild virus that diminished his normally healthy appetite, and then a strong bout of thrush, yeast overgrowth in his digestive system that lasted weeks, made his mouth and throat sore, causing him not to want to eat. After two doctor visits and three weeks of antifungal medication, the yeast seems to be tamed, but Alex still has not returned to his normal eating habits. Instead of eating a wide range of foods that he usually enjoys, he prefers coconut milk, Rice Dream non-dairy “ice cream,” nondairy yogurt, applesauce, and pureed fruit. Along with the cold and smooth diet, he takes nutritional vitamin, mineral, and protein supplements to ensure he gets what he might be missing in this limited diet.

Although nearly seventy percent of children and adults with autism are often dubbed picky eaters, Alex has always had a good appetite and been willing to try a variety of foods. While some children with autism limit themselves to the “white diet” consisting of bread, crackers, pasta, and french fries (often because their bodies crave the glutens in them which may be bad for their digestive systems), Alex would eat a wide range of fruits, vegetables, meats, and seafood, as well as gluten-free and dairy-free carbohydrates. We considered ourselves fortunate that the only three foods he did not like as a child were broccoli, mashed potatoes, and popcorn. As he matured, he even decided that he liked broccoli and mashed potatoes, leaving only popcorn as the food he detests because it’s “too salty” (although I suspect its texture is to blame, as well).

In an article entitled “The Picky Eater” found on the Autism Research Institute’s website, Kelly Dorfman addresses four possible causes for picky eating often found in autism and other developmental delays. [To read this article, please click here.] First, she describes sensory issues and poor oral motor skills that may make eating difficult. For example, for those with sensory issues, smells, tastes, and textures of certain foods may be overwhelming. In addition, poor oral motor skills may cause children to choke or gag, making eating challenging for them. To overcome these problems, she recommends reducing anxiety, using an electric toothbrush to desensitize the mouth, and strengthening oral skills by using a straw to drink, all of which we have done with Alex over the years.

Next, she explains the role nutritional deficiencies play in picky eating. Essentially, picky eating can lead to malnutrition, which can lead to even greater reduction of appetite and even more nutritional deficiencies, creating a vicious cycle. To remedy this, she recommends giving vitamin and mineral supplements to address any nutritional needs not being provided by a limited diet. From the time he was little, Alex has always taken vitamin and mineral supplements, and we are fortunate that he has been willing to swallow pills, making giving him these supplements easier.

Another issue addressed in this article is the role of digestive problems that often plague people with autism. She explains that digestive issues can cause a child to feel uncomfortable and make them want to avoid eating. Consequently, she recommends diagnosing any digestive problems through a Comprehensive Digestive Stool Analysis and treating inflammation with proper supplements. When Alex was younger, we had this test run and discovered that he had issues with yeast overgrowth in his digestive tract, which has plagued him over the years. Whenever he has yeast flares, we treat them promptly with antifungals, but we must always be on the lookout for the symptoms that show his system is not in balance. Also, we have repeatedly asked him if his mouth, throat, or tummy are bothering him, and he insists that he feels fine.

Finally, she explains the role of medication side effects in appetite. For example, stimulant medications often given for ADHD can diminish appetite. If the medications are necessary, parents may need to be creative about getting their children to eat, providing the most nutritional meals at breakfast and afterschool when the medication has less impact on the appetite.

Although Alex is not on stimulants, I do suspect that medication may be playing a role in his recent changing eating habits. Because he has been doing so well in managing anxiety, one of his medication levels was lowered significantly, and he was weaned off another medication completely. While he has done quite well with these medication changes, remaining calm and content, I think the reduction of depressant medications in his nervous system could mean that the nerves in his mouth are reawakening. Perhaps textures, tastes, and smells are a bit overwhelming to him, so he is choosing soothing foods, hence ‘the cool and smooth diet” he’s adopted the past few months.

Moreover, I have noticed that he has also become somewhat sensitive to sounds, something he had overcome many years ago through auditory training at home with the EASe listening program. He prefers that the television be turned to a lower volume lately, and we have seen him cover his ears at times when noises bother him. Perhaps the sound of chewing is much louder to him than previously, and he is choosing foods that make no noise when he eats them. A recent trip to the dentist where his teeth were checked and found to be healthy and cavity-free reassured us that dental pain is not behind his current preferences for smoothies and smooth foods. I think that he is avoiding noisy foods right now that bother him.

While Alex’s changes in appetite have concerned us a bit, he seems healthy and happy, and he is maintaining his weight, despite changes in his eating habits. I really believe that increased sensitivity first triggered by thrush and then continued with medication changes that made him more aware of textures, tastes, and smells as his nervous system became more alert, have been responsible for his new eating habits. In addition, we know that Alex is very intuitive about what his body needs, and his wanting to eat kiwi, strawberries, bananas, peaches, and apricots daily instead of occasionally may be because he needs the nutrients in those specific fruits. He will see his primary care doctor again in a few weeks, and we will see what his opinion is regarding Alex’s current eating habits.

In the meantime, we keep offering Alex other foods we know he has liked in the past, hoping that he may be willing to eat them again. In addition, I try to make eating fun for him, offering him a plate of his current favorite foods I’ve dubbed—in honor of one of his favorite television game shows—“The Wheel of Luncheon,” which makes him grin and cooperate with eating, even when he thinks he’s not hungry. Most of all, we pray that God is restoring Alex’s health and guiding us to do whatever we need to do to help him be healthy and happy. Moreover, we know, despite our concerns, that this phase, like so many we have seen over the years, will eventually fade, and Alex will be fine.

“The Lord will accomplish what concerns me; Your lovingkindness, O Lord, is everlasting; Do not forsake the works of Your hands.” Psalm 138:8

Sunday, August 27, 2017

The Solar Eclipse

 
“Why, who makes much of a miracle?
As to me I know of nothing else but miracles…
To me every hour of the light and dark is a miracle,
Every cubic inch of space is a miracle,
Every square yard of the surface of the earth is spread with the same,
Every foot of the interior swarms with the same…
What stranger miracles are there?”
~Walt Whitman, “Miracles”

Last Monday’s solar eclipse dominated the media not only for the day of that rare event but also for weeks leading up to this phenomenon. As people searched for safety glasses to allow viewing of the eclipse and schools determined best policies to protect students from permanent eye damage and people made plans to travel to places where the eclipse was in totality, Alex took all the excitement in stride. After all, he had known this eclipse was coming for quite a while.

Among the various occupations Alex has discussed pursuing over the years, one at the top of his list is astronomer. Ever since he was a little boy, he has been fascinated by the constellations and planets and everything else in the galaxies. Carefully studying the many astronomy books on his bookshelves, Alex has learned a great deal of information about the solar system over the years. This knowledge usually comes forth whenever a category appears on Jeopardy dealing with astronomy, and Alex typically knows all the details about the topic and proudly shares those facts that he has stored over time.

For several years, any time the year 2017 would be mentioned on the news, Alex would always say, “That’s a solar eclipse year.” I knew he had read that somewhere but didn’t give it much thought until recent weeks when the solar eclipse seemed to be a major topic of interest for many, not just amateur astronomers like Alex. Of course, he was delighted to see the various features and articles on the television news and in the newspapers regarding the eclipse, and he studied this information with the same intensity that he has always had when learning about the solar system.

Last Sunday evening, a professor of astronomy at Valparaiso University offered a lecture to the public about solar eclipses, and we knew this was right up Alex’s alley. As the professor discussed all the dates and statistics and mechanics behind solar eclipses, some in the audience checked their phones and shifted in their seats, perhaps overwhelmed by all this data. Alex, however, sat attentively and enthusiastically for the entire hour, clearly hanging on to every word this expert offered. Many in the audience seemed most concerned with how they could view the eclipse, even asking rather questionable questions as to whether they could look through industrial strength garbage bags or Ritz crackers to observe the eclipse safely. However, Alex didn’t seem to be as concerned about viewing the eclipse; he seemed to be content just knowing that this event that he had anticipated for years was finally going to happen.

One of the points that resonated most with me during the lecture was that the profound size differences between the sun and moon as well as the vast distances between them makes the lining up between these two celestial objects to create a total solar eclipse miraculous. While the media has been describing this eclipse as “a wonder of nature” or “a wonder of science,” this professor speaking at a Christian university proclaimed the eclipse as a “wonder of God.” Indeed, I appreciated that he gave proper credit to the creator of the universe.

On Monday, the day of the eclipse that many had anticipated, Alex and I watched the hoopla on television, more interested in seeing the video of the actual eclipse than watching people’s reactions to this rare event. Without eclipse glasses because I didn’t trust their complete safety and most places were sold out of them anyway, we simply watched the darkness creep in and creep out as the moon passed in front of the sun. Standing on our back deck with our heads down, making sure we would not be looking at the sun, we noticed how distinct our shadows were at that moment. Using old-fashioned technology, I showed Alex the progress of the eclipse through a pinhole viewer I’d made from two pieces cut from poster board. I didn’t want him to miss out on this event he’d patiently awaited.

While Alex appeared pleased to observe the eclipse on television and on the poster board on our deck, he wasn’t really as excited as many people seemed to be, which surprised me because he finds astronomy more fascinating than most do. While many people described being awed and amazed, Alex just seemed content to be an observer. Perhaps Alex’s scientific knowledge along with his strong faith in God leads him to be less surprised about what happens in nature than most people are. He knows what causes solar eclipses, when and where they will occur, but more importantly he knows who is responsible for these miracles and trusts that God’s timing is perfect.

While many people are already talking about the next solar eclipse and even making plans to travel to places of totality, Alex calmly waits for that astronomical event in the future, knowing that it will arrive as expected. His constant faith keeps him grounded, even as he considers the stars and the heavens. When I ask him what he thinks will happen in the future, he often wisely reminds me, “Wait and see.”  I’m sure that whenever people mention 2024, Alex will be telling us, “That’s a solar eclipse year.” Over the next seven years, I know that many changes will happen and that Alex will continue to make progress. Together, we will wait and see what God has planned.

“For the Lord is God, and He created the heavens and earth and put everything in place. He made the world to be lived in, not to be a place of empty chaos. ‘I am the Lord,’ He says, and there is no other.'” Isaiah 45:18