Sunday, August 12, 2018

More Than Words

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

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

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

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

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

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

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

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

Sunday, August 5, 2018

The Eyes Have It

On Monday, we took Alex for his annual eye exam. As with all appointments related to his health, Alex was looking forward to his visit to the optometrist, especially because he thinks she has a pleasant voice. Since we have been going to this eye clinic for several years, we know that things typically run smoothly there, which is one of the main reasons we take Alex there. However, the normally calm office seemed a bit “chaotic,” to quote one of the staff, that day.

When we arrived, a new staff member handed me forms to fill out. The first one, part of HIPAA compliance for privacy of information, would allow Alex to give Ed and me permission to access his medical information. Since Ed and I are Alex’s legal health care representatives and have medical power of attorney, we already have this right. As I tried to explain this to the receptionist, she seemed confused and not completely convinced until another staff member told her that I was correct and the form did not need to be completed.

After that, she pulled out a colorful photograph of a human eye and started a sales pitch about the wonderful diagnostic photos their office could take of the inside of Alex’s eyes. Having had these same photographs taken of my own eyes, I knew that Alex could neither sit still long enough to have this done, nor would he like the overwhelming sensation of having a very bright flash of light in his eyes. Consequently, I told her that he could not have that part of the exam done. Undaunted, she continued her spiel, explaining that he would not need to have his eyes dilated for that test. Undaunted, I explained that Alex has autism and would not be able to do that test. Fortunately, the other woman at the desk again intervened for me, telling the receptionist, “His mom is right. She knows what he can and can’t do. He won’t have the photograph taken.” As I nodded appreciatively toward her, the receptionist seemed a bit disappointed as she put her visual aid away.

When we went for Alex’s preliminary testing with the optometry tech, Alex did a great job of cooperating and following her directions. She seemed to understand that he could not do the photograph, nor the peripheral vision test that requires more dexterity than he possesses, using a hand clicker when images appear on a screen. We appreciated her kindness toward him, especially since she praised him enthusiastically about how well he had done.

After we went back to the examination room, she and I went over Alex’s medication changes while Ed chatted with Alex, who was patiently waiting. She asked me if they could dilate his eyes, and I immediately said no a bit sharply, and then remembered my manners, adding, “Please don’t.” For all the years Alex has gone to the eye doctor, we have managed to avoid testing and dilating that might upset him and make him unwilling to go to future eye exams. Since he has no real issues other than being slightly nearsighted, we didn’t need to risk upsetting him with unnecessary procedures. She seemed to understand, and then she began the preliminary vision exam.

While wearing his glasses, Alex began to read the letters off the screen. Even though I was bothered that the letters were tilted at a slight angle because the projector was not level, Alex didn’t seem annoyed by this. For the first line of letters, he recited letters that weren’t even close to what was on the screen. When I asked him if he could see any of them clearly, he admitted that he couldn’t. I told him that if he couldn’t see something, he could just tell us that and didn’t have to make up answers. That seemed to reassure him. For the next line, which was a little larger font, he was able to identify some letters but confused a T for and I and an F for an E. At least he was getting closer. By the time he saw the third line, he was able to read all of them easily and correctly. When this test was repeated on his other eye, the process was the same, except this time, he told us that he couldn’t read any of the smallest letters, heeding my advice.

When the eye doctor came in to examine Alex’s eyes more closely, he continued to be calm and cooperative, answering her questions clearly and admitting when he was unable to read certain letters. After various tests, she concluded that his eyes are healthy, but his prescription had changed slightly. When Alex was retested with the stronger lenses, he was able to read all of the small-sized font letters easily instead of just making up letters or admitting that he couldn’t see them. That confirmed that he would need new glasses.

As we went to select frames for the new glasses, the entire staff seemed to be engaged in learning something at a computer, so we browsed the rather meager selection of Flexon frames. Because the Flexon brand is quite durable and bends rather than breaks, we have always chosen this brand for Alex, even though he takes excellent care of his glasses. By the time the optician came over to help us, I was about ready to ask for his prescription so that we could get glasses somewhere else. When I asked her if they had any other choices, she seemed a bit unnerved and admitted that she doesn’t usually work in this office. The woman at the desk who had been helpful when we arrived immediately told us that there were more frames in the back and that she would get them for us. Soon, she returned with two boxes of frames, and we quickly found a few we liked. Because Alex isn’t terribly picky about the appearance of his glasses, Ed and I agreed on a pair similar to the one he already has.

Next, we had to order the lenses, which we thought would be simple since it had only been two or three years since he last ordered glasses. However, the optician told us that they get rid of the electronic files after a couple of years, so we weren’t sure whether that information was available or not. After rolling my eyes at Ed, trying to contain my growing annoyance, the optician was able to locate the previous information, saving us time.

Thinking we were now home free, another staff member informed us that they couldn’t take a credit card payment because they were switching to a new system. She seemed a bit overwhelmed until I assured her that after we went home, I would come back with my checkbook and pay with a check, figuring that was the simplest solution. Despite all the unexpected issues that had arisen during this visit, Alex seemed completely unfazed. As I could feel my frustration rising, I knew that Alex was handling these small annoyances correctly by smiling and being polite and patient. If he could be content, so could I.

After Ed and I took Alex home, we praised him for being pleasant and cooperative at the eye doctor. Then, I returned to the eye clinic to pay for Alex’s exam and glasses. The kind woman who had been supportive apologized to me for the “chaotic” atmosphere and hoped that Alex hadn’t been upset by anything that had happened. I thanked her for her help and assured her that he was fine. She commented that Alex always does well, adding that the eye doctor and tech had also remarked on what a great job he had done. Despite the various minor issues, Alex had successfully completed his annual eye exam. Perhaps more importantly, he reminded me through his calm demeanor not to be upset by little things. Instead of focusing on the paperwork issues, he was interacting with the staff in a positive way, making a favorable impression. Needless to say, we’re awfully proud of the young man we have raised who sees––even without his glasses––what’s truly important in life.

“Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.” I Corinthians 13:12

Sunday, July 29, 2018

Planning for Every Possibility

Because Alex deals not only with autism but also anxiety, he relies heavily on schedules and carefully crafted plans to deal with a world that can easily overwhelm him. After months of not wanting to go places, recently he has finally overcome many of his fears about leaving the house. However, Ed and I must work together in tandem to make sure everything goes smoothly, which requires preparation on our part for every eventuality to make sure Alex’s outings are pleasant and stress-free. Failure to complete the necessary tasks could mean an anxiety attack for Alex, or even worse, a regression where he refuses to leave the house for weeks or even months.

Since last summer, with the guidance of Alex’s doctors, the dosages of four medications he takes have been reduced, and one has been completely eliminated. While this is a wonderful testimony to the progress he has made, the healing God has provided, and the benefits of behavioral and music therapies, one noticeable side effect has been increased sensory issues, which are common in autism. Most notably, his appetite, which has always been excellent, has decreased because he tells us that he doesn’t like the taste, smell, and texture of some foods. In addition, like many with autism, he is bothered by sound sensitivity now, something he had overcome many years ago. Besides covering his ears, he will often lower the television volume or complain that music is too loud. Consequently, we need to take these sensory issues into consideration when we take him places where sensory overload could be a problem.

Although we tease Alex that he is like the fairy tale character Goldilocks, who keeps looking until she finds what is “just right” for her, Alex isn’t intentionally picky. His heightened senses mean that bath water must be neither too hot nor too cold and volume must be neither too soft nor too loud. Going places this winter caused issues for him not only because he deemed the temperatures too cold, but also because the wind bothered him in how it felt and sounded to him. Trying to get Alex past his issues about leaving the house meant showing him that we understood his concerns and reassuring him that we would make outings as comfortable as possible for him.

One of the first issues we must consider in planning outings with Alex is time. He is especially conscious of time, relying on his watch and daily schedule to keep him calm. If we are going someplace, he needs to know when we are going, how long we will be gone, and what time we’ll be home. Whenever possible, we schedule appointments around the crucial times of his daily routine: mealtimes, bath time, and when his beloved game shows are on television. Thanks to DVR, we can tape any television broadcasts Alex might miss if he goes places, and making sure these shows are available for later viewing is one of Ed’s main responsibilities in this process of getting Alex to leave the house.

In addition, Ed acts as the enthusiastic game show host in convincing Alex to choose to go places. In our own version of Let’s Make a Deal, Ed has figured out all the tricks to get Alex to pick the unknown prize behind door number one. By reassuring Alex that altering his sacred daily routines will be worth the sacrifice, Ed makes him willing to venture out into the world. Because Alex trusts Ed, he usually buys into the persuasive techniques and agrees to the offer of an outing.

On the other hand, my main role is to gather any items Alex may decide he needs while we are gone. In case he gets thirsty or hungry, we bring along a drink in a sports bottle and a snack for him. In case he gets chilled in the summer, we take along a jacket. If his lips feel chapped, I carry lip balm in my purse for him. If mosquitoes are out, I have bug bands, wristbands that repel insects, for him to wear. If it’s too sunny, we have a ball cap for him to wear, and fortunately, the Transitions lenses in his glasses automatically darken like sunglasses. In case his hands get dirty, I carry wet wipes for him to clean them easily. When he was younger, I used to carry a change of clothes, too, in case he spilled something on them. Of course, mothers of young children also travel with all these items; however, one doesn't expect this need to continue when the child is twenty-six years old.

The newest addition to my list of things to bring is a pair of headphones to muffle sounds that bother Alex. While some children with autism always travel with headphones, we have not needed them until recently. Even purchasing those headphones required the “just right” mentality: not too loose and not too tight, not too big and not too small. And, in case he refused to wear them after all those considerations, they were not too expensive, either. After examining numerous pairs, we found the ones we thought were “just right” and were even able to find them in red, Alex’s favorite color, which was another good incentive for him to wear them.

After I have assembled everything Alex might need and Ed has sold him on going, we still have some reassuring to do. We have found that giving Alex too much time to think about things can give him opportunities to fret. Therefore, spontaneity often works better. Once we decide we’re going, we can’t wait too long, or he may change his mind. In addition, we’ve found that we can’t overwhelm him with too many choices: two is usually a good number of options to give him. Otherwise, he will respond with, “What would be good?” That translates to, “I don’t want to make a decision; please stop asking me questions!” After we get in the car, Alex also needs reassurance about the weather, especially if it’s too hot or too cold, or if it’s too windy, or if it might rain, or if there will be thunderstorms. Even though I will tell him that the weather is fine, apparently he doesn’t trust my meteorology knowledge and requires true confirmation from Ed that the weather is fine before we can go on our merry way.

Once we have arrived at our planned destination, we also know that we need an escape plan in case Alex becomes overwhelmed. Ed and I have often joked that we could work with people in the Witness Protection Plan because over the years we have become skilled in helping Alex get out of any public place unnoticed when he has suddenly wanted to leave. To make this easier, we always choose aisle seats in the back, know where exits are located, make sure we know where our car is parked, and look for signs that Alex has had enough. Knowing that anxiety can strike at any time, we always remind Alex that if he needs to leave at any time, we will take him home. (This also explains why we usually choose activities for him that are free or inexpensive.) If we need to make a hasty retreat, we are ready to do so at a moment’s notice.

Fortunately, our planning, experience, and cooperative efforts have paid off this summer. We have been able to take Alex walking on nature preserve trails, shopping at various stores, playing video games at the local family fun park, seeing exhibits at the county fair, and enjoying music at outdoor concerts. Certainly, the opportunity to experience various community outings is important for Alex, and we are pleased that he is willing to overcome his fears and sensory issues to try going different places. The rewards for our careful planning and preparation come when we see Alex smiling and having fun and even, as he did after a concert in the park last week, proclaiming that he liked it “one hundred percent!” Clearly, our efforts were a success, and we are thankful that Alex can enjoy life’s simple pleasures.

“Commit your actions to the Lord, and your plans will succeed.” Proverbs 16:3

Sunday, July 22, 2018

Allergies and Autism

According to a recent study, food allergies are much more common in children with autism than in typical children. In the article “Kids with food allergies are twice as likely to have autism,” published online in Science News on June 8, 2018, Aimee Cunningham references a study published online in the June issue of JAMA Network Open. [To read this article, please click here.] This research used information from the U.S. National Health Interview Survey from 1997-2016 that included nearly 200,000 children from ages 3-17, 1868 of whom had autism. [To read the research article, “Association of Food Allergy and Other Allergic Conditions With Autism Spectrum Disorder in Children,” please click here.]

Of those children with autism, 216 of them, or 11.25%, also had a food allergy, whereas only 4.25% of the typical children had food allergies. In addition, children with autism were found to also be more likely to have respiratory allergies or allergic skin conditions, such as eczema, than typical kids. Specifically, 18.73% of the children with autism had respiratory allergies, such as asthma, as compared to 12.08% of typical children. In addition, 16.81% of children with autism had skin allergies, while 9.84% of typical children had skin allergies.

In breaking down the groups of children with autism into age, gender, and ethnicity, the researchers noted some interesting trends. Skin allergies were less common in girls than in boys, and older children with autism (ages 12-17) were also less likely to have skin allergies. Respiratory allergies were also less common in girls than in boys, and white children with autism were less likely than other ethnicities to suffer from respiratory allergies. In addition, younger children (ages 3-11) were less likely to deal with respiratory allergies. However, statistics for food allergies in children with autism were significant for both genders, all ages, and all ethnicities.

While the research did not examine potential causes for the link between autism and allergies, the data suggests a connection between autism and autoimmune responses. One of the study’s co-authors, epidemiologist Wei Bao of the University of Iowa, states, “The causes of ASD remain unclear.” However, he suggests three possible scenarios: food allergies may contribute to autism, autism may contribute to food allergies, or some other factor may cause both food allergies and autism concurrently, such as immunologic dysfunction, notably autoimmune disorders and frequent infections, often seen in autism.

In discussing the immune function connection with autism, the authors suggest, “It is possible that the immunologic disruptions may have processes beginning early in life, which then influence brain development and social functioning, leading to the development of ASD.” Further, they note, “In addition, there may also be shared genetic and nongenetic risk factors influencing both allergy and ASD.”

Moreover, the researchers propose a link between autism and the gut-brain-behavior axis. Referencing the higher incidence of both gastrointestinal issues and food allergies found in autism, they hypothesize a potential chain reaction. As they explain, “Food allergy may involve alterations in the gut microbiome, allergic immune activation, and impaired brain function through neuroimmune interactions, which may finally affect the enteric nervous system and central nervous system leading to neurodevelopmental abnormalities.” Essentially, food allergies upset the gut, causing the immune system to overreact, and the autoimmune response impacts the brain negatively, causing symptoms of autism.

While I appreciate the efforts these researchers have made to connect allergies and autism, I found one statement in their article surprising: “Little is known about the association between food allergy and ASD.” For many years, parents of children with autism and many doctors know that allergies to gluten, milk products, and soy are quite common in autism. Moreover, removing these allergens from the diet often improves symptoms of autism, including digestive issues, such as diarrhea, constipation, and abdominal pain, which often leads to improved behaviors.

Furthermore, more research needs to be done regarding what might be the cause of the “immunological disruptions” found in autism. Clearly, some autoimmune issues exist, as indicated by the presence of food, respiratory, and skin allergies noted in this research article. Certainly, autoimmune tendencies could be inherited, but the increasing numbers of children with autism and allergies also correlates to the increasing numbers of vaccines given to children.

For example, when my mother was a child in the 1940’s, only four vaccines were recommended: smallpox, diphtheria, tetanus, and pertussis. When I was a small child in the 1960s, only eight vaccines (smallpox, diphtheria, tetanus, pertussis, polio, measles, mumps, and rubella) were recommended. When Alex was a child in the 1990’s, the following vaccines were recommended: diphtheria, tetanus, pertussis, polio, measles, mumps, rubella, Hib, hepatitis B, and varicella. Today, small children are recommended to receive all of those vaccines plus hepatitis A, pneumococcal, influenza, and rotavirus. [Source: Children’s Hospital of Philadelphia: “Vaccine History: Developments by Year”]

While protecting children from disease is essential, the safety of the vaccine mechanism needs to be studied further to prevent the potential autoimmune issues found in autism. In addition to activating the immune system, which is what vaccines are supposed to do, vaccines also contain toxic substances, such as aluminum, formaldehyde, and thimerosal, as well as substances that can provoke allergic responses, such as egg protein, antibiotics, and monosodium glutamate (MSG). [Source: Centers for Disease Control and Prevention: “Ingredients of Vaccines–-Fact Sheet”]

Recognizing the connections between autism and allergies is a good first step. However, determining the source of both of these increasingly common conditions is necessary to prevent more children from suffering needlessly.

“And you will know the truth, and the truth will set you free.” John 8:32

Sunday, July 15, 2018

Spiritual Gifts

A little over a week ago, I was having routine annual tests run at the lab where we also take Alex for his blood tests. While one lab technician was drawing my blood, another saw me from across the room and happily exclaimed, “It’s Alex’s mom!” Surprised that she recognized me with all the patients she sees and without Alex in tow, I was pleased that she remembered Alex and me. She went on to tell me that she missed him because she hadn’t seen him in a while, which I told her was a good thing because it meant he has been healthy. However, I explained that he would be coming in soon for his regular six-month blood tests, and she earnestly said that she hoped she would get to see him then. After asking if he was enjoying watching baseball on television this summer, remembering his devotion to the Chicago Cubs, she enthusiastically remarked, “He’s always so good! He’s my favorite patient!”

While her kind remarks about Alex made my day, filling me with motherly pride and endearing her to me for her sweetness, this wasn’t the first time she’s heartily praised him. Every time she has done his blood tests, she always shows her delight in seeing him, which is probably why he looks forward to having blood draws. Two of the other lab technicians have also proclaimed Alex as their favorite patient and seem to remember him fondly whenever they see him.  Of course, we are pleased that Alex cooperates fully with the tests and is pleasant and polite to the lab technicians. However, I think their warmth toward him goes beyond their kindness and his willingness to follow directions.

A few days later, I took Alex to Burger King, where two of the ladies who work there are especially friendly and call him by name. No matter what they are doing, they will rush over to greet him, ask him how he is doing, and make him feel welcome. Although I’m sure they recognize that he has autism, they never treat him condescendingly, and they patiently wait for him to give his order. As they say hello to him, take his hand, and tell him they’ve missed him, Alex smiles broadly, tells them, “Nice to see you,” and leans forward, putting his hands between his knees as his entire body shudders with joy. While they are friendly to all customers, these sweet ladies make Alex feel special, and I suspect he makes them feel just as special.

Sometimes I wonder what Alex’s vocation would be, had autism not affected his life so profoundly. While his cousins are pursuing college and careers and getting married and having children, Alex remains in a child-like existence. Beyond pondering what occupation Alex might have chosen, I wonder what calling he might have felt to serve others, had his language and social skills not been impaired. Perhaps those limitations are less important, however, than the spiritual gifts God provides. In Romans 12:6, the Apostle Paul notes, “In His grace, God has given us different gifts for doing certain things well.” He goes on to list various gifts, such as prophesy, teaching, encouraging and serving others, giving, and leadership. In re-reading this scripture, the last line made me recognize Alex’s gift: “And if you have a gift for showing kindness to others, do it gladly.”

Certainly, I believe that good people treat Alex kindly, perhaps because of or even in spite of how autism affects him. However, the more I watch people interact with him––whether it be his therapists who appreciate the smart, funny, and sweet young man he is and feel pleased to have witnessed the progress he’s made over the years, or those whose brief contact with him leaves a lasting positive impression––I see that Alex’s kind heart cannot be hidden by autism. Moreover, he doesn’t feel the need to conceal his joy when others are kind to him; his smile and happy shudder let people know how glad he is to see them, which has to make them feel pleased, too. If there were any doubt as to how much those people mean to Alex, their importance would be confirmed in knowing that he asks God to bless them every night in his bedtime prayers. I have to believe that God hears those earnest prayers from His child whom He graced with a gift for kindness.

Although I don’t know exactly what the future holds for Alex, I do know that God has good plans for him. More importantly, Alex trusts with unwavering faith that God has a plan for his life. Until those plans are revealed, we wait with hope and anticipation, and we are thankful for the people God places in Alex’s life who see the good in him and allow him to share his kindness and joy, giving his life a valuable purpose and meaning.

“The Lord is my strength and shield. I trust Him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving.” Psalm 28:7

Sunday, July 8, 2018

A New Approach to Interpreting Autism Behaviors

Because impaired social skills are usually associated with autism, researchers have often concluded that most people with autism prefer not to interact with others. However, a fascinating research article recently published online in the journal Behavioral and Brain Sciences contradicts previous assertions that people with autism lack motivation to engage with others socially. In “Being vs. Appearing Socially Uninterested: Challenging Assumptions about Social Motivation in Autism,” psychology professors Vikram Jaswal, the father of a daughter with autism, and Nameera Akhtar provide a fresh and informed perspective as to why people with autism engage in behaviors that may appear anti-social.

In their 84-page article (which can be accessed by clicking here), these researchers examine four behaviors commonly seen in autism and previously attributed to a lack of social interest: limited eye contact, infrequent pointing, repetitive body movements, and repeating phrases, or echolalia. As they conducted their research, they used interviews of children and adults with autism and their families, considered alternative reasons for behaviors, and examined unique ways people with autism use to express their interest in socializing. Explaining their novel approach, they note, “These steps are crucial, we believe, for creating a more accurate, humane, and useful science of autism.”

Previous scientific studies asserted that people with autism preferred not to interact socially. To demonstrate this view, the authors cite earlier research in which people with autism are described as “confined in their own world,” possessing a “powerful desire for aloneness,” and having “little or no social interest.” In contrast, the authors point out that behavior does not always truly reflect thoughts and feelings, providing the examples of people who smile when they’re sad or people whose Parkinson’s disease affects their speech that could make them appear aloof. While some behaviors in autism may be deliberate, such as avoiding eye contact due to anxiety, others can’t be controlled, such as repetitive hand movements. The authors assert, “These unusual behaviors do not have any necessary relation to social motivation, and some may constitute adaptive responses to the unique circumstances of being autistic.”

The first behavior discussed in this article, eye contact, is often considered lacking in autism. As the authors note, eye contact varies even among typical people, depending upon their personalities and their cultures. Too much or too little eye contact can give the perception of being rude. In addition, “gaze aversion,” or looking away, proves helpful for typical people as well as those with autism to help them concentrate and solve difficult problems. In their interviews with people who have autism, the authors discovered that people with autism might avoid eye contact because they find it easier to focus on what the other person is saying. Also, some people with autism find eye contact overwhelming or uncomfortable. They want to engage with others, but looking them in the eyes may be stressful, so they avoid eye contact, which may help them better focus on what the person is actually saying.

Another behavior that may be lacking in children with autism is pointing to obtain things or to share experiences or to draw attention to something. While this lack of pointing has been thought to be an indicator that children with autism do not wish to engage in social behavior, the authors instead conclude that motor impairments are the true reason. In interviews with people who have autism, they revealed difficulties in being able to move the ways they wanted. One adult with autism commented, “I had very little sensation of my body.” Consequently, pointing may not be an issue with social motivation but instead caused by motor and sensorimotor deficits. In addition, people with autism may have different interests than others and have different opinions as to what is worth sharing. As one adult with autism noted, ‘I’m not entertained by the ordinary things that most people enjoy.”

Along with lack of eye contact and pointing, repetitive body movements in autism have been connected to a lack of interest in socialization. These stereotypical behaviors include hand flapping, spinning, rocking, and finger flicking. For people with autism, these self-regulatory behaviors often act as coping responses to anxiety. As the authors note, all people engage in these types of behaviors; typical people might twirl their hair, bite their nails, or drum their fingers when stressed or bored. In people with autism these behaviors may be involuntary or intentional, but the authors emphasize that none of them have anything to do with social connections.

The fourth category of behaviors commonly associated with autism, echolalia, deals with the verbal repetition of words and phrases. These utterances may be dialogue people with autism have heard on television or in movies, or they may repeat words and phrases they have heard others say. Typically, researchers have deemed echolalia as meaningless, and this type of language is discouraged in children with autism. However, the authors reject the notion that echolalia serves no purpose; rather, they compare it to early language development in small children. They state, “But just because a listener is unable to decipher the meaning of an utterance in a particular context does not mean that the speaker did not have one in mind.” For some people with autism, echolalia conveys anxiety and may help with stress, just as a typical person repeats a mantra. Some may use echolalia to get others’ attention by using phrases they can say easily, and what others perceive as “nonsense” may be a phrase misunderstood because of difficulty with pronunciation. Therefore, the authors emphasize the need to find meaning and make connections in echolalia because this behavior indicates the person with autism needs and wants to interact through communication.

By re-examining these four behaviors common in autism, the authors conclude that people with autism want to interact with others, but they have different ways of showing this interest in socialization. Moreover, they contradict previous views of autism behaviors as deficits in social motivation by offering valid alternate explanations, supported by interviews with people affected by autism. Finally, they point out that the previous perception of people with autism lacking social motivation negatively affects research and intervention. For example, therapists, teachers, and parents often encourage children with autism to make eye contact and discourage them from using repetitive motions and echolalia. These attempts to change behaviors may leave the child with autism frustrated and anxious, and the child’s “motivation to engage with someone might diminish.” Ironically, in trying to make the child more social, these methods may make them less social. In addition, some therapists, teachers, and parents may mistakenly believe that children with autism do not want to interact with others and leave them alone. Again, in misunderstanding the behaviors, they may not provide precisely what the child needs and wants––social interaction with others.

With Alex, we have witnessed how the common behaviors of autism have faded over time. His eye contact has improved as his anxiety has subsided, but if he is concentrating on something, he may need to look away. When he was little, he had trouble pointing to things, and would use his flat hand instead to point out something. Clearly, his fine motor delays hindered his ability to use his index finger as a pointer. Over time, he has gained a bit more control and can point to things, usually words (often on signs) he wants us to see or insects he wants us to remove from his vicinity. Although Alex doesn’t repeat lines from television or movies, he does have certain pat phrases he repeats throughout the day. Several times a day, he tells us about “young voices” he heard on television or dates that have special meaning for him or certain events he remembers. When he’s really upset, he’ll complain about gas prices or not wanting to use a typewriter. Though these comments may seem out of place, he has trouble expressing himself, especially when he’s anxious, and he knows these phrases will cue us he’s concerned. Speech has always been a struggle for him, and he relies upon phrases he’s perfected through many repetitions to get our attention, share experiences, and convey his thoughts and feelings. He obviously wants to interact with others, but delays in language and motor skills, along with sensory issues, make socialization difficult. Nonetheless, Alex shows perseverance and continually works to overcome these obstacles of autism.

While autism may remain a mystery to many, those of us who parent children with autism have learned many of the secrets they hold in their minds that process the world differently than the rest of us. That the father of a child with autism would pursue the real reasons for common behaviors, despite how they contradict the tenets held by most autism researchers, doesn’t surprise me a bit. When all the pieces of the so-called autism puzzle are finally found and assembled, the workers around the table are likely to be parents of children with autism, striving and seeking to find ways to make their children’s lives the best that they could be.

“There is no speech and there are no words, yet their voice is heard.” Psalm 19:3

Sunday, July 1, 2018

U.S. States with Highest Autism Rates

Always seeking interesting and potentially helpful autism research, this week I found an online article listing the fifteen states in the U.S. with the highest rates of autism. Posted last December in the “Healthy Living” section of the website, this article cites a list the Los Angeles Times assembled of the states with the highest autism percentages. [To read this article, please click here.]

Those wanting to cut to the chase and learn which states have the highest autism rates will find themselves waiting for the pages to load and scrolling past ads since the states are listed separately in a slide show presentation format. Apparently, to build even more suspense, the states are listed in a countdown format, with the number one state not revealed until the end. Seemingly underscoring the seriousness of the autism epidemic, the website has chosen to use scenic photographs for each state that seem more appropriate for a website promoting tourism than describing a lifelong disability. The message comes across as, “Yes, these states have many people with autism, but they also have skyscrapers, mountains, lakes, and lighthouses!” Perhaps this website thought the lovely images would soften the harsh statistics. Somehow, these photographs suggest that the states listed and depicted are nice places to visit, but with the high rates of autism, one would not want to live there, to paraphrase the old adage.

According to this article, the states with the highest rates of autism are as follows:
1. Minnesota with 1.4% of the population having autism
2. Oregon with 1.2%
3. Maine with 1.1%
4. Rhode Island with 1.0%
5. Massachusetts with 0.9%
6. Pennsylvania also with 0.9%
7. Indiana also with 0.9%
8. Vermont with 0.8%
9. Connecticut also with 0.8%
10. Virginia also with 0.8%
11. Maryland also with 0.8%
12.  Michigan also with 0.8%
13.  Wisconsin also with 0.8%
14. California with 0.7%, and
15. Nevada also with 0.7% of the population.

Along with each state listed and the percentage of its population having autism––and, of course, its lovely tourism photograph––the article provides a brief commentary with a rather upbeat tone and offers resource information. For example, for my home state of Indiana, the article notes: “Indiana has one of the highest rates of autism in the country, but luckily also has many organizations that help autistic individuals. The Indiana Resource Center for Autism and Autism Society for Indiana are two of the biggest organizations in the state, providing tons of support resources for autistic individuals.” While I hate to sound ungracious to live in Indiana, which is apparently a great state to live if you have autism, “luckily” and “tons” seem to be poor word choices. However, I would agree that the Indiana Resource Center for Autism is, indeed, a terrific resource, especially its website and Facebook page. As a matter of fact, their Facebook page led me to this article.

Despite my usual optimistic outlook on life, even I found the overly upbeat tone of this article a bit much. For example, the article offers the following reassurance that may not be true: “Autism is not a death sentence, and many patients can lead healthy fruitful lives with the right support network.” Considering the high rates of unemployment among adults with autism along with the incidence of various mental and physical health conditions that often accompany autism, this assertion may overestimate the value of support networks. Nonetheless, the article continues touting these supports, stating, “Many different organizations have stepped up to provide support and awareness to autistic individuals, which poses a good sign for autism patients around the country.” Certainly, autism organizations prove helpful, but still many families struggle day to day in dealing with autism.

For those seeking reasons behind the high rates of autism in the fifteen states specifically listed, the article has nothing to offer, noting, “Researchers aren’t sure exactly what causes autism, and it is unlikely that geographical area directly affects the chance of a child being born with autism.” Unsatisfied with this casual attitude regarding the high rates of autism, I looked for trends and possible links. For instance, using the four regions of the country designated by the United States Census Bureau, I grouped these fifteen states geographically.

Three states, Oregon, California, and Nevada, are located in the West region that includes thirteen states. Four states, Minnesota, Wisconsin, Michigan, and Indiana, are part of the twelve states in the Midwest region. Only two states, Virginia and Maryland, both actually East Coast states, are part of the sixteen states found in the South region. Most notably, six of the nine Northeast region states have high autism rates: Maine, Rhode Island, Massachusetts, Pennsylvania, Connecticut, and Vermont. Surprisingly another Northeast state did not make this list; according to the U.S. Centers for Disease Control and Prevention, New Jersey has the highest autism rates in the country with 29.2 out of 1000 eight-year-old children diagnosed with autism. That would make seven out of the nine Northeast states with high autism rates; perhaps there may be a geographical connection, after all.

Using the World Atlas website, I looked for geographical trends that might affect autism rates. For example, on the list of U.S. states most affected by industrial air pollution, among the top twenty were six of the fifteen states with high autism rates: Indiana, Pennsylvania, Michigan, Virginia, Wisconsin, and Maryland. After considering environmental factors, I examined economic statistics. Of the twelve states with the highest poverty levels (over 17% under the poverty line), none of them are included in the list of states with high autism rates. In fact, the states with high autism rates tend to be among the wealthiest in the nation: Minnesota, Connecticut, Vermont, Maryland, and Virginia.

Since the high autism rates are often questionably attributed to better diagnosis, perhaps more educated parents are related to the higher rates in some states. Among the states with the highest percentage of holders of advanced degrees, four of the top states also have high autism rates: Massachusetts, Maryland, Connecticut, and Virginia, all of which are also in the Northeast region. Perhaps geography does make a difference, especially when other factors are considered.

What matters more than lists or regions or potential reasons is that too many families are dealing with autism. Even with touted support networks, autism involves medical and mental health issues and financial burdens. While small percentages may not seem daunting, calculating just how many people are actually affected may make the problem clearer. For example, in my home state of Indiana, whose current population is estimated at 6.7 million, with 0.9% having autism, that would mean 60,300 people, or approximately the population of Terre Haute, have autism. When the number of people in the state with autism is the same as the 12th largest city in that state, clearly something must be done. No support networks, no matter how wonderful they may be, can keep up with that many people. Instead of making lists with pretty pictures and failing to ascertain real reasons, researchers must discover the underlying causes of autism in order to find the cures. As a nation, we must dedicate resources not only to help those affected with autism but also to seek ways to overcome this autism epidemic impacting millions of Americans.

“O Lord my God, You have performed many wonders for us. Your plans for us are too numerous to list. You have no equal. If I tried to recite all Your wonderful deeds, I would never come to the end of them.” Psalm 40:5

Sunday, June 24, 2018

Treating Health and Well-Being in Autism

Although autism is primarily considered a developmental condition that hinders communication and social skills and causes repetitive behaviors, recent research confirms what many parents have known all along: autism also involves psychiatric and medical issues. In the article, “Psychiatric and Medical Conditions in Transition-Aged Individuals with ASD,” published April 2018 in the journal Pediatrics, researchers note that adolescents and young adults with autism deal with more psychiatric and medical conditions than typical young people. [To read this article, please click here.]

For this study, researchers used 2013-2015 data from Kaiser Permanente Northern California, which provides care to people in the San Francisco and Sacramento regions. Information regarding health care for teenagers and young adults ages 14-25 was studied with a typical control group of 20,516 individuals and 4,123 with autism spectrum disorders.

Compared to the typical individuals, psychiatric conditions were significantly more common in those with autism. In fact, 34% of those with autism also had at least one psychiatric condition. To illustrate, 15% had ADHD, 14% had anxiety, 10% had depression, and 6% had bipolar disorder.

In addition to psychiatric conditions prevalent in young people with autism, the researchers found that teenagers and young adults who have autism also dealt with various medical conditions. Specifically, 42% had infections, 25% dealt with obesity, 18% had neurological issues, 16% had allergy and/or immunology concerns, 15% had musculoskeletal conditions, and 11% had gastrointestinal problems. As the article notes, “Compared with the TC [typical control] group, individuals with ASD were at significantly increased risk for most medical conditions.”

One theory for the high rate of obesity in the autism group was the use of antipsychotic medications; one common side effect of these drugs is obesity. While 19% of the patients with autism took antipsychotic medications, even those who did not take these drugs had a higher incidence of obesity than those in the typical group. Perhaps poor dietary habits due to sensory issues, a lack of exercise, and/or metabolic problems contributed to this rate of obesity. Interestingly, those with autism were much less likely to smoke or abuse drugs than those in the typical group. The researchers suggested that uses of tobacco and drugs tend to be social activities, which people with autism may avoid.

The researchers speculated various reasons why teenagers and young adults with autism also have psychiatric and medical conditions. First, isolation from others due to impaired social skills may cause anxiety and/or depression. Also, the medications used to treat psychiatric conditions could cause or intensify medical conditions, such as obesity and gastrointestinal problems. In addition, sensory issues and difficulty interacting with others may hinder access to medical care. Moreover, medical providers may not know how to meet the needs of those with autism, causing treatment to be less successful.

While the researchers did not definitively identify why teenagers and young adults have significantly more psychiatric and medical issues, they noted that more research needs to be done in this area. They conclude, “…there is a pressing need for all clinicians to approach ASD as a chronic health condition requiring regular follow-up and routine screening and treatment of medical and psychiatric issues.”

While mainstream medicine may not know why so many children, adolescents, and young adults with autism also have psychiatric and medical conditions, practitioners of functional medicine who treat patients with autism have some good ideas as to why they have additional issues. On May 31, 2018, in a weekly live chat on the Spectum Awakening Facebook page, Dr. Jared Skowron discussed “the seven medical arenas of autism” and offered helpful suggestions for testing and treating these issues.

The first medical issue often seen in autism is autoimmunity, such as food sensitivities or PANDAS/PANS syndrome caused by strep infections. These conditions may benefit from anti-inflammatory supplements, such as fish oil. Another medical concern found in autism involves brain chemistry issues, including problems with regulating serotonin, dopamine, and/or adrenaline. Supplements such as amino acids and B vitamins may prove helpful to regulate brain chemistry.

A third medical issue common in autism involves detoxification issues, which can lead to heavy metal toxicity. Recent studies indicate that many teenagers with autism have abnormal levels of aluminum in their brains. Chelation with silica or sulfur compounds may be needed to remove these toxins from the body. Another cause of medical conditions in autism is genetic mutations; the availability of home test kits, such as 23 and Me, allows simple ways to diagnose potential genetic issues that may need to be addressed.

Perhaps one of the most common medical problems in autism is the issue of gastrointestinal dysfunction. These problems of the digestive tract can often be treated by diets that eliminate allergens and/or medications and supplements that treat yeast overgrowth, harmful bacteria, and parasites. In addition to problems with the digestive system, some people with autism have issues with the endocrine system. Specifically, adrenal and thyroid supplements may be needed to adjust hormone imbalances that impact stress levels and the immune system. Finally, mitochondrial dysfunction may accompany autism, causing severe fatigue. Various supplements, such as CoQ10, can improve cellular function issues that occur with mitochondrial disease.

Although autism primarily affects communication, social interaction, and behavior, the study of Northern California teenagers and young adults demonstrates that many young people with autism must also contend with psychiatric and medical issues. Diagnosing and treating these additional conditions may be difficult for medical personnel, due to the obstacles autism typically presents, but improving the mental and physical health of these young people is crucial to their well-being. Certainly, people with autism deserve to be as happy and healthy as possible, and those practitioners willing to seek causes and cures for accompanying ailments deserve praise for their dedication to healing.

“Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard.” Isaiah 58:8

Sunday, June 17, 2018

Fatherhood and Faith

“Alex watches for a moment, then turns away, unimpressed by the bird’s apparent weightlessness, as though his three-year-old innocence assures that nothing is inconceivable. Suddenly, I’m stunned by my son’s lack of surprise at anything nature offers, and I realize how much wiser than I he may be…”~“Spring Walk Along the Lake” from Tidal Air by Edward Byrne

Like many people with autism, Alex isn’t keen on affectionate gestures. If asked for a hug, he will lean forward awkwardly and accept an embrace, usually while keeping his own arms at his sides. While he doesn’t give kisses, he will lean his cheek or forehead forward to accept an offered kiss. Hugs and kisses probably cause sensory overload for him, and he doesn’t seem to need physical affection to reassure him that he is loved.

Because he hardly ever initiates physical contact, those times that he does are rare and precious. The other night I had the privilege of watching one of those sweet moments. As we were going upstairs at Ed’s office building, I was walking behind the two of them and saw Alex reach for Ed’s hand. I suspect that he felt a bit unsure climbing those steep steps and needed the steady hand of his dad, trusting that he would guide him. Even though Alex is a twenty-six-year-old young man who stands as tall as his father, when he reaches for Ed’s hand, he reminds me of the little boy who grew up knowing that his dad would always be there for him.

One of the qualities that Alex appreciates most about his dad is that he finds Ed amusing. Every morning, Ed helps Alex brush his teeth and makes a tedious task a fun-filled two minutes. As the sonic toothbrush whirrs in Alex’s mouth, Ed runs an animated monologue about how brushing teeth is like a game show, which keeps Alex entertained and eager to brush his teeth every morning. Unfortunately, for the bedtime tooth-brushing episode, I lack the energy and enthusiasm Ed demonstrates in the morning and simply count down the time left as the electric toothbrush beeps every thirty seconds. Fortunately, Alex doesn’t seem to hold this against me, but I’m sure he prefers brushing his teeth with Ed.

What Alex finds even more entertaining is when Ed loses his cool. Although Ed is usually very easy going and patient, especially with Alex, when he gets annoyed or frustrated, Alex thinks his dad is really funny. I think Alex secretly hopes that a train will be on the railroad tracks to be in our way when we are going places because his dad’s sighing over this inconvenience makes Alex laugh. However, Alex thinks it’s even funnier when his dad gets so frustrated that he curses aloud. While we are fortunate that Alex has not picked up some of the more colorful language we use occasionally, he is eager to report to me specifically which “bad words” Ed has uttered when he was annoyed. Not only does Alex find Ed’s irritation amusing, but he is also gleeful about tattling on him to me.

Over the years, Alex has developed common interests that he enjoys sharing with Ed: music, sports, the stock market, and weather. Every afternoon, Alex asks him why the stock market was up or down that day, and Ed provides the details he needs to understand the current economic status. On days when the stock market has not done well, Ed has taught Alex not to fret, reminding him, “Sometimes it goes up; sometimes it goes down, just like temperatures.”

Every night at 9:00, Alex wants to "do weather with Daddy," asking Ed for the high and low and record temperatures of the day, even though he is quite capable of looking up this data himself. Nonetheless, this is a shared activity Alex looks forward to doing with his dad every evening. On the rare evenings when Ed is not home because of work obligations, Alex will check the high and low temperatures with me, but I can tell he’s not nearly as enthusiastic about doing weather statistics with me as he is with his dad. Similarly, even if Alex has been watching a baseball game with me, he will tell me that he’ll ask his dad the final score of the game the next day if he goes to bed before the game ends. Perhaps he just doesn’t trust my skills with numbers. On the other hand, he may be seeking his dad’s pragmatic attitude if his team loses; Ed reminds Alex, just as he does with the stock market: “Sometimes you win; sometimes you lose.” With his calm reassurance, Ed has taught Alex to deal with downtrends and losses as part of life, and if all else fails, sigh and say something Alex will find amusing.

Throughout his life, Alex has learned that he can always depend on Ed, which is one of the greatest gifts a father can give his child. Because Alex has developed trust in his earthly father, he has developed strong faith in his heavenly father. Knowing that his dad will meet his needs, whether it be providing a helping hand, entertainment, information, or reassurance, Alex believes that God will similarly always take care of him. Since Ed has been a trustworthy father, Alex implicitly trusts in God, knowing that nothing is impossible with God. On this Father’s Day, I am truly grateful that Alex has been blessed with a father who loves him unconditionally, makes his life the best that it can be, and has raised him to be filled with faith, making us proud of the young man he has become.

“The father of a righteous child has great joy; a man who fathers a wise son rejoices in him.” Proverbs 3:11-12

Sunday, June 10, 2018


“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

Sunday, June 3, 2018

Treating Autism

One of the greatest resources in dealing with autism is the ability to communicate with other parents through the Internet. When Alex was first diagnosed with autism, the presence of autism support groups was somewhat limited, but using my dial-up modem and belonging to a few Listserv groups allowed me to gain a wealth of knowledge from other parents who were in similar situations to ours. Thanks to Facebook, parents today have many autism groups from which to choose, giving us the opportunity to share ideas, empathize, and gain insight into ways to help our children.

Perhaps because we have been dealing with autism for more than twenty years, the attitudes of some parents on these online groups puzzles me. In fact, they remind me of some of my former middle school students. While many are earnestly and eagerly seeking information, others ask questions that have repeatedly been answered, and still others who don’t like the provided answers argue with those who have told them the truth. For some whose children have recently been diagnosed with autism, they want solutions that are inexpensive, easy, and quick. Of course, parents don’t want their children to suffer more than necessary, and we seek the best ways to help our children. However, autism treatment requires money, dedication, patience, and time.

Over the years, we have tried a variety of therapies and interventions to help Alex: speech, occupational, sensory integration, cranial, chelation, behavioral, music, and vision therapies, along with the gluten-free/casein-free diet, nutritional supplements, vitamin methyl B-12 injections, and medications. Some methods worked better than others, but all of them have contributed to helping Alex make progress. When Alex was younger, insurance typically did not cover expenses for autism therapies, and we paid for these therapies ourselves. We were blessed to be able to afford these expenses somehow, even on our teachers’ salaries. Thankfully, more therapies are covered for families by insurance and state funding, as Alex’s current therapies are, so that families don’t have as much financial burden as they did in the past. Nonetheless, I don’t regret a single penny that we spent on Alex’s treatments because I know they helped make him healthier and improved his skills.

Along with the expenditure of money, parents must also realize that helping a child with autism requires a great deal of effort. Certainly, putting a child on a restricted diet can seem overwhelming at first, but the benefits of improved behavior and healing digestive issues reward those efforts. However, parents need to be fully committed to making changes before attempting interventions. When we decided to put Alex on the diet free of glutens and milk products, we committed to removing these foods completely from his diet for at least three months. After seeing improvements during that trial period and grateful for Alex’s cooperation with the diet, we have kept him on this diet for nearly twenty years.

In addition, therapeutic interventions, such as speech and behavioral therapy, often require a great deal of practice and take months and even years before significant progress is made. Rarely do sudden changes occur in response to interventions. For us, the quickest changes we saw were in response to the supplement melatonin that immediately helped Alex sleep better instead of wandering around in the night and vision therapy that significantly improved Alex’s balance within a few weeks. Another intervention that had sudden impact was the introduction of vitamin methyl B-12 injections. Within a week of starting the B-12 shots, Alex was finally able to use the toilet independently after ten years of potty training. Apparently, the methyl B-12 injections caused nerve healing that allowed him to feel the urge to use the toilet. In this situation, a seemingly quick fix solved a problem we had been dealing with for many years. However, most of the improvements we have seen were more gradual, requiring dedication and patience, even when we could not see much progress being made.

For those of us whose children are now adults with autism, we have gained years of experience that we are happy to share with others. We have learned that treating autism is not a sprint race, but instead, a marathon where we must pace ourselves along the way. Perhaps one of the best pieces of advice I learned came from Alex’s childhood doctor, who always reminded me to begin only one new intervention at a time so that we could assess the response to therapy accurately. In addition, she advised us to give new things a fair trial because healing is not usually instantaneous; progress takes time.

Most of all, the lesson I have learned along the way is to trust God, especially in the difficult times and when progress seems slower than I’d like. Despite our fervent prayers for Alex, God has His own plans for healing. Through our experiences, we have developed our faith as we’ve waited and been encouraged by the progress we have witnessed. While Alex has not fully recovered from all of the issues autism has caused, his support team of therapists calls him “a success story,” and we realize that all the costs, efforts, and time have been worthwhile. Moreover, we are thankful that Alex is happier and healthier, and we continue to place our hope in God, knowing that He will always be faithful to us, just as He has always taken care of our needs in the past.

“…And let us run with endurance the race God has set before us. We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith…” Hebrews 12:1-2