Recognizing Autism in Babies

According to research, some common traits of autism usually emerge in infants during the ages of 9-16 months. However, parents may not be familiar with these early signs, which can cause delays in having their children diagnosed with autism. Often, children are not diagnosed with autism until they are four or five years old, postponing early intervention that can help address issues associated with autism. This month, two notable organizations introduced helpful guides for parents of infants to help them identify concerning characteristics related to autism so that they may seek further assessment.

According to “Early signs of autism for infants and toddlers,” written by Joe Dziemianowicz and posted April 1, 2019, on the Today show website, a new online resource called Baby Navigator can help parents recognize common traits of autism. [To read this article, please click here.] Developed by the Florida State University College of Medicine’s Autism Institute, under the direction of Amy Wetherby, Ph.D. in communication disorders, this site is designed for parents.

As part of the Baby Navigator site, Autism Navigator offers a wealth of free resources for families, including photos, videos, and screening tools for babies 9-18 months. [To view this site, please click here.] The goal of this site is to help parents recognize the first signs of autism to assist in early detection and diagnosis. A primary resource of Autism Navigator is an online text illustrated with photographs, 16 Early Signs of Autism by 16 Months. This book not only defines common characteristics found in babies with autism but also contrasts these behaviors with those of typical infants. In addition, they note that if only one or two traits are exhibited, parents should not be concerned, but babies showing four of the traits should be screened for autism. Moreover, they recommend that those infants who display eight or more of the traits should be referred for an autism evaluation.

The 16 Early Signs of Autism by 16 Months include the following:

1. “Hard to get your baby to look at you”––They explain that typical babies gaze at their parents’ face and eyes, whereas babies with autism often do not look at faces.

2.  “Rarely shares enjoyment with you”––They note that typical babies smile and laugh, while babies with autism may rarely smile or show facial expressions and may have a flat affect, making it difficult to tell whether they are happy.

3.  “Rarely shares their interests with you”––They explain that babies with autism often do not use gestures, such as pointing, or sounds or words, as typical babies do.

4.  “Rarely responds to their name or other bids”––They describe how babies with autism may not come when they are called or may not engage in interactive behaviors, such as waving or looking where someone else is pointing.

5. “Limited use of gestures such as showing and pointing”––They indicate that babies with autism often do not point with their fingers.

6.  “Hard to look at you and use a gesture and a sound”––They explain that typical babies use a combination of behaviors to show their interests and wants. Babies with autism may not be able to do all three behaviors at the same time.

7.  “Little or no imitating other people or pretending”––They note that around a year old, babies copy others’ behavior, such as caring for a teddy bear or pretending to cook. However, infants with autism may not display these behaviors.

8.  “Uses your hand as a tool”––They describe how typical babies ages 9-16 months use a variety of gestures, such as reaching and waving. In contrast, those with autism have limited gestures and may use their parents’ hands as tools instead, such as using a parent’s hand to point instead of their own.

9.  “More interested in objects than people”––They explain that typical babies like to interact, whereas babies with autism may ignore other people, especially if they are already engaged with toys or objects.

10.  “Unusual ways of moving their fingers, hands, or body”––They note that babies with autism may stiffen and flare their fingers or display unusual posture.

11.  “Repeats unusual movements with objects”––They describe how children with autism may spin or line up objects.

12.  “Develops rituals and may get very upset over change”––They note that typical babies learn routines but can adapt easily to change. By contrast, babies with autism need routine and may be inflexible and upset about change.

13.  “Excessive interest in particular objects or activities”––They explain that infants with autism may be overly focused and difficult to shift their attention away.

14.  “Very focused on or attached to unusual objects”––They note that babies with autism are often drawn to utensils or gadgets.

15.  “Unusual reaction to sounds, sights, or textures”––They describe sensory issues found in autism, such as putting hands over ears in loud environments, squinting in bright light, and being bothered by clothing tags.

16.  “Strong interest in unusual sensory experiences”––They provide examples of behaviors observed in children with autism, including looking out of the sides of their eyes and rubbing objects that have texture.

This clearly written and well-organized book offers a valuable resource for parents of infants who may be concerned that their children are displaying characteristics of autism. Another excellent resource introduced this month may also provide helpful guidance for those parents of infants concerned about their children’s development. The National Autism Association recently published “Autism SOS” online as a simple guide to help parents recognize signs of autism at 12-18 months and 18-24 months. [To view this guide, please click here.] The letters SOS stand for Social Avoidance, Obsession and Repetition, and Speech Delays.

Specifically, social avoidance in autism includes the tendency to prefer objects to people, a lack of eye contact, and not responding to others’ facial expressions, such as smiles. In addition, social avoidance includes the following behaviors: not imitating parents, preferring to play alone, and not liking being touched.

Examples of obsession and repetition commonly seen in autism may involve children staring at their hands or objects, especially things that spin. Moreover, they may engage in repetitive movement, such as hand flapping or rocking. Also, they may exhibit a need for sameness and routine, and they may become upset by sensory issues, including loud noises and bothersome textures.

The third identifying aspect of autism, speech delays, is critical but not as specifically addressed by Autism Navigator. For many parents, speech delays are the impetus to have their children assessed for autism. “Autism SOS” explains that speech delays involve expressive language, such as the baby not attempting to communicate by pointing or reaching or by making sounds like “da-da” or “ba-ba.” In addition, the child may repeat words over and over with no real intent to communicate to others, and by two years old, the child may not be able to produce two-word phrases. Furthermore, children with autism may display speech delays by their lack of receptive language, not responding to their names nor understanding simple statements and questions directed to them.

While the rapidly increasing numbers of children diagnosed with autism are worrisome, the increase of helpful resources for parents is encouraging. Hopefully, the availability of useful guides, including Autism Navigator and “Autism SOS,” will encourage parents to seek professional help for their children who are struggling with autism so that they can overcome obstacles and develop skills needed to develop their full potential.

“After these signs take place, do what must be done, for God is with you.” I Samuel 10:7

On Target

Recognizing sensory and motor issues people with autism and other disabilities face, popular retailer Target has addressed these needs by recently offering special lines of clothing and home furnishings. Through their Cat & Jack clothing for children, Universal Thread clothing for adults, and Pillowfort home items, Target now offers products thoughtfully designed with their special needs customers in mind.

According to articles on Target’s corporate website, A Bullseye View, titled “Cat & Jack Includes Adaptive Apparel to Help Meet the Needs of Even More Kids” and “Design for All: Cat & Jack Add Select Sensory-Friendly Pieces for Kids,” Target began offering “sensory-friendly” clothing in 2017. [To read these online articles, please click here and here.] For example, this line of clothing has stamped labels instead of tags, flat seams, and no embellishments that may bother children with sensory sensitivity. In addition, leggings were designed with extra room in the hips to accommodate older children who wear diapers.

Target clothing design director Stacey Monsen knows firsthand the difficulties of dressing a child with autism: her young daughter has autism and was not potty trained by age seven. Working with a volunteer group of parents and organizations who could provide input, the Target team worked to solve some of the problems of clothing children with special needs. As Stacey Monsen states, “My goal is to keep being an advocate, for my daughter and for others.”

Not only are the Cat & Jack clothing sensory friendly, but they also come in a wide range of sizes: toddler sizes 2T-5T and bigger kids sizes extra small through extra extra large. Additionally, the clothes are quite reasonably priced from $4.50-$39.99, with most priced under twenty dollars, making sensory friendly clothing available to a wide range of customers.

Following up on the popularity of the Cat & Jack sensory-friendly clothing, Target introduced adaptive clothing in the fall of 2018. Using input from “real kids,” designers developed apparel to meet special needs. Specifically, this clothing line includes snap and zip closures on the sides and back along with abdominal access openings that are hidden. Other features include footless sleepwear, bodysuits sized for older children wearing diapers, and jackets with zip-off sleeves. Additionally, this clothing is made with “extra-soft, comfortable, and durable cotton knits.” All of these adaptive clothes were designed to make dressing easier for children with special needs and their parents.

According to a Disability Scoop online article written by Shaun Heasley and published on January 31, 2018, “Target Adding Clothing For Adults With Special Needs,” the retailer added a line of clothing to serve women with sensory and adaptive needs in February 2018. [To read this article, please click here.] The Universal Thread collection offers tops and jeans in a wide range of adult sizes reasonably priced from $5 to under $40. Like the Cat & Jack clothing line for children, the adult versions are “sensory-friendly” with stamped labels instead of tags, flat seams, and extra-soft material. The jeans have longer inseams, wider leg openings, high-rise backs, and no pockets to make getting dressed easier.

Building on the success of the clothing lines addressing special needs, Target has recently added sensory-friendly items to their Pillowfort home collection. According to an online article written by Mark Wilson on Fast Company published April 3, 2019, and titled “Target’s newest furniture is for kids with sensory sensitivity,” Target is now offering furniture items specifically designed for special needs children. [To read this article, please click here.] Just as with their Cat & Jack sensory-friendly and adaptive clothing, Target designers consulted with parents and children to gain input on this sensory-friendly furniture line.

Furthermore, Target’s website details the careful thought put into these special home items on their “Sensory Friendly Kids’ Home” page. [To access this page, please click here.] For example, the cocoon seat offers “cradled comfort” as well as a removable, washable “super-soft” cover with a water-resistant liner. The hideaway tent allows children a place to get away from sensory overload while providing a carrying case for easy transport. The crash pads, like the cocoon seats, have removable, washable covers with water-resistant linings, as well as durable fabric and foam. The weighted blankets, which many children with autism find soothing for sleep, have “super-soft removable, washable covers.” As with the special clothing lines, Target has kept these home items reasonably priced from $20-100, making them available to most families. As Target senior vice-president Julie Guggemos explains, “At Target, our purpose is to help all families discover the joy of everyday life.”

Certainly, Target should be commended for their concern for special needs customers and their willingness to seek input about how to make their lives easier and better. By offering a variety of reasonably priced clothing and furniture that address sensory and adaptive issues, Target can successfully meet the needs of a growing population. Indeed, through the Cat & Jack, Universal Thread, and Pillowfort collections, Target can help families, especially those with special needs, “discover the joy of everyday life.”

“And this same God who takes care of me will supply all your needs from His glorious riches, which have been given to us in Christ Jesus.” Philippians 4:19

Autism by Numbers

Last Monday, April 1^st, marked the beginning of this year’s Autism Awareness Month. One of the many things I have learned from Alex is the value of numbers and statistics, as well as qualifying figures as “approximately” or “exactly.” In honor of my adult son with autism, I will share some important data that demonstrate the need for autism awareness every month, not just every April.

The sources of my information are articles from the websites for the National Autism Association and The Autism Community in Action. [To read “Autism Fact Sheet,” please click here. To read “Autism & Safety Facts,” please click here. To read “Autism Statistics and Cost,” please click here.]

1.  According to current statistics from the Centers for Disease Control and Prevention, approximately 1 in 59 children in the United States has autism.

2.  The rate of autism is 4.5 times higher in boys than in girls: an estimated rate of 1 in 42 boys vs. 1 in 189 girls in the U.S.

3.  Approximately 40% of children who have autism do not speak.

4.  Estimates reveal more than 3 million people in the United States have autism.

5.  Since 1970, autism rates in the U.S. have increased significantly from 1 in 10,000 to 1 in 1,000 in 1995 to 1 in 250 in 2000 to the 2018 report of 1 in 59.

6.  Even though autism is the most rapidly increasing developmental disorder, only about 5% of government research funding is spent on autism.

7.  Autism is often––in as many as 85% of people with autism––accompanied by other conditions, such as anxiety, OCD, epilepsy, allergies, asthma, autoimmune disorders, and gastrointestinal disorders, as well as difficulties with eating, sleeping, and sensory issues.

8.  In 2008, researchers in Denmark discovered that people with autism have double the mortality risk than typical people, primarily due to drowning and accidents.

9.  Approximately half (48%) of children with autism try to wander away from safe environments.

10.  In children with autism aged 14 and younger, 91% of total deaths in the U.S. resulted from accidental drowning after wandering away from a safe place in 2009, 2010, and 2011.

11.  Of adults who have autism, 87% live with their parents.

12.  The United States currently spends about $268 billion for autism costs annually. This amount is projected to increase to $1 trillion per year by the year 2025.

Behind these facts and figures are real people and their families whose lives are impacted every day by autism. While awareness is important, action is needed to help children and adults who are struggling with autism. Because so many cannot speak for themselves, we must speak for them.  Those who wander need to be protected from danger, and underlying medical and psychiatric conditions need to be treated instead of simply being dismissed. Moreover, more research needs to be done to find the causes and cures for this lifelong disorder that is growing at epidemic levels at great personal and financial cost. Our society can and must do more to help these vulnerable and precious souls afflicted with autism and their families who love and care for them.

“Teach us to number our days, that we may gain a heart of wisdom.” Psalm 90:12

Waiting for a Change

“At the time I have decided, my words will come true. You can trust what I say about the future. It may take a long time, but keep on waiting––it will happen!” Habakkuk 2:3

About a week and a half ago, we noticed Alex wasn’t acting like himself. Instead of being good-natured, he was irritable. Instead of being logical, he was irrational, jumping to ridiculous conclusions. In addition, his OCD, which is usually controlled well by medication, was heightened as he kept repeating the same questions and phrases. From years of experience, Ed and I recognized these telltale behaviors as a likely sign that Alex once again had yeast overgrowth in his digestive system, which affects his behavior negatively.

Fortunately, his doctor understands the impact yeast has on Alex’s behavior and trusts our diagnostic skills in this area. After I sent his doctor a brief email describing our suspicions and requesting a refill of antifungal medication, he responded quickly and assured me that he had sent a prescription to the pharmacy. When I went to pick up the antifungal, I was pleased and surprised to discover that his doctor had authorized enough refills to last a year. Clearly, he recognizes the negative effect yeast overgrowth has on Alex, and he trusts our judgment in giving medication as needed to help Alex heal.

As we have found from experience, the antifungal medication makes a difference quickly. Within an hour, we see Alex become more docile and less edgy. Within two hours, he’s content and calm, and the OCD behaviors seem to disappear. Because he responds so favorably to the antifungal, our suspicions regarding what made him irritable are confirmed. Since we have dealt with these infections repeatedly for years, we know what to expect and are always grateful that the medicine works fairly rapidly to make Alex feel better. Waiting is easier because we don’t have to wait long to see changes, and we are confident he will get better.

A few days ago, Ed came home from work grimacing and holding his left hand on his lower back. Some Google searching had allowed him to diagnose himself with his first kidney stone. Despite my suggestion to go to the emergency room that evening, he decided to try to treat the ailment himself by drinking water and taking over-the-counter pain relief medicine. The next morning, when the pain was getting worse instead of better, I made an appointment for him to see his doctor, who confirmed that he did, indeed, have a kidney stone. Even though his doctor prescribed various medications to help the nausea and pain as well as to help the stone pass, Ed was suffering from what he described as the worst pain he’d ever experienced in his life.

At that point, we knew he needed to go to the emergency room, but with Alex, plans always need to be made carefully so that he doesn’t get upset and overreact. A quick phone call to my parents, who thankfully live only ten minutes away, solved the problem. My dad, who has dealt with kidney stones over the years and could empathize with Ed’s pain, would take him to the ER while my mom and I stayed home with Alex to keep him calm. As we waited, we prayed that Ed wouldn’t have to wait long for his pain to ease.

About an hour later, my dad called to tell me that everything was going well and that all of the medical staff had been kind and helpful. In fact, the doctor taking care of Ed had suffered from kidney stones, too, so he could relate to how painful they are. When the nurse gave Ed intravenous pain medicine, she assured him that he would feel much better within twenty minutes. While that intensely painful waiting time must have seemed much longer, the nurse’s prediction was accurate: Ed’s pain level dropped from the highest rating of 10 down to 1 in twenty minutes. Moreover, as the doctor had predicted, Ed was relieved to be able to pass the stone last night fairly painlessly without any further medical intervention. Just as with Alex, the right medical treatment makes all the difference in the world, and experiencing positive changes makes waiting for complete healing bearable.

While I hate that Alex and Ed had to suffer needlessly, both of these experiences show how things can change suddenly for the better. So much of life is spent waiting and wondering when things will change. Many times I have sat in waiting rooms, wondering how much longer before my turn would arrive or even if they had forgotten about me. The longer I waited, the more I became frustrated and began questioning if I should just give up and leave. Nonetheless, the waiting eventually ended, and my turn always arrived, despite my lack of patience.

Similarly, the longer we deal with Alex’s issues related to autism, I can become discouraged waiting and wondering if things will ever change. However, experience has taught us through the years that things do get better in time. We wondered if he would ever sleep through the night, and in time he did. We began to lose hope that he would ever learn to use the toilet independently, but after years he finally did. We questioned if he would ever be able to carry on a conversation with us, and now some of our sweetest moments are spent chatting with our fascinating and entertaining son. Somehow the longer time passes, we think these changes for the better are less likely to happen, but we continue to wait for the appointed time God has designated for these milestones.

Thankfully, I was raised by loving parents whom I can always trust for help, support, and comfort, so I know that I can also trust my heavenly Father to take care of my family. When my parents told me the other evening that they were on their way to help us, I had no doubt that everything would be all right. Knowing that help is coming makes the waiting easier to take. Similarly, I can trust that God’s help is on the way, so I don’t need to despair. If we didn’t have to wait in life, there would be no real need for faith. Moreover, the longer I live, the more of God’s goodness I see, fulfilling His plans, while making the waiting less wearisome and more worthwhile, as I know that healing will eventually come in His perfect timing.

“I wait for the Lord, my soul waits, and in His word, I put my hope.” Psalm 130:5

Autism and OCD

Since many people with autism are also diagnosed with obsessive-compulsive disorder, scientists have been studying how these two conditions impact each other and differ from one another. A recent article written by Daisy Yuhas and published online on February 28, 2019, in Scientific American, “Untangling the Ties Between Autism and Obsessive-Compulsive Disorder,” compares and contrasts these two disorders. [To read this article, please click here.]

Research indicates that up to 84% of people with autism suffer from some form of anxiety, and up to 17% of people with autism spectrum disorders also have obsessive-compulsive disorder. People with autism and/or OCD may respond to sensory stimuli in unique ways; sensory overload can cause anxiety, which is part of OCD. Typically, those with OCD deal with obsessions, or recurring thoughts, feelings, and ideas. They may also be driven to engage in ritualistic, repetitive behaviors, or compulsions, attempting to get rid of these unwanted obsessive thoughts.

In studies, researchers have observed that OCD rituals appear quite similar to repetitive behaviors found in autism. For example, those who have obsessions with cleanliness may wash their hands over and over, or those who have obsessions with safety may repeatedly check to make sure doors are locked and appliances are turned off. Typical repetitive behaviors in autism include lining up toys or other objects in a certain order, flapping hands and/or rocking the body, or watching a scene from a video repeatedly.

While both conditions involve repetitive behaviors, differences exist between OCD rituals and autism behaviors. To illustrate, OCD rituals are quite specific and must be performed in a certain way to relieve anxiety. However, autism behaviors tend to be more generalized. Those with autism usually have various repetitive behaviors they can choose to calm themselves. As Columbia University professor of psychiatry Jeremy Veenstra-VanderWeele notes, “They’re [people with autism] just looking for anything that’s soothing; they’re not looking for a particular behavior.”

Although the reasons for repetitive behaviors in OCD and autism may differ, the parts of the brain associated with both conditions appear to be the same. Recently, scientists have discovered common pathways and brain regions in both autism and OCD, namely the caudate nucleus located in the brain’s striatum. The striatum area of the brain is linked to voluntary movement and reward processing. The neural circuits running through the striatum are involved in how behaviors start and stop, including in how habits form.

Additionally, the caudate nucleus deals with memory, specifically storing and processing prior knowledge and experiences to help in making future decisions. Moreover, the caudate nucleus is crucial for using language and learning. According to research, the caudate nucleus tends to be unusually large in people with autism and in people with OCD. Scientists have theorized that in people with OCD, the caudate nucleus may not be able to control transmission of worrisome thoughts, which affects their actions and decisions. Hence, rituals are used to cope with anxiety associated with obsessive thoughts.

While the most common intervention for OCD is cognitive behavioral therapy, those who have dual diagnoses of autism and OCD usually do not benefit from this treatment method. In cognitive behavioral therapy (CBT), therapists help people discover new coping techniques by changing their thought patterns. However, researchers note that people with autism tend to have difficulties imagining situations and alternative outcomes. For this reason, CBT may need to be individualized to meet the needs of each person. For example, children with autism may benefit from having their parents included in the therapy sessions. Other people with autism may find CBT more useful if language is adapted, visuals are provided, and/or rewards are offered. While personalization of CBT therapy may require more effort, the effectiveness of this therapy will likely increase.

Even though autism and OCD share common characteristics, such as repetitive behaviors in response to sensory overload and anxiety as well as involvement of a specific area of the brain, differences exist between ways of seeking calming behaviors and the effectiveness of standard treatment. For those dealing with both autism and obsessive-compulsive disorder, therapists need to individualize methods of treatment, teaching calming skills and coping methods so that their clients can enjoy a better quality of daily life.

“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

Change of Plans

When good things happen, people often attribute them to fortunate coincidences or lucky breaks. Today, on St. Patrick’s Day, one might even give credit to "the luck of the Irish.” However, I know that these benefits are not simply random events but are instead blessings, and I’m constantly looking for the hand of God in everyday life. Last week, I didn’t have to look far, as we saw God’s attention to detail as changes in plans made our lives easier.

Two weeks ago, Alex was scheduled to have his regular six-month cleaning and check-up at the dentist. Up until a few years ago, we took him to pediatric dentists who specialized in treating disabled patients, but then we switched him to our family dentists. Because our dentists and their staff are so kind and understanding of Alex’s needs, Alex loves going for dental appointments. He is especially fond of his hygienist, who is wonderful with him, kindly explaining what she is going to do beforehand so that he’s not taken by surprise and constantly praising him for doing a good job.

The day of Alex’s scheduled appointment, the office called to tell me that his hygienist would not be there that day. They gave us the option to keep his appointment and have another hygienist clean Alex’s teeth or to reschedule another appointment with his regular hygienist. Knowing that Alex would prefer to see his beloved hygienist, I opted to reschedule his appointment for next month.

Last Wednesday morning, I was surprised to receive a call from our dentists’ office telling me that Alex’s hygienist had an appointment available that afternoon if we wanted it. Although this was another sudden change in plans, I thought Alex would be pleased to see his hygienist sooner than expected. After asking him if he would like to go to the dentist, he decided he did, and we took the offered appointment that day.

The day that Alex was originally scheduled to go to the dentist was a bitterly cold and windy day. In fact, I had considered canceling his appointment because I wasn’t certain that we could convince him to go in the bad weather. By contrast, last Wednesday was mild and fairly warm, and we knew he would be fine going out in the pleasant weather. Even his dentist remarked on what an improvement in the weather there had been between the two days. I have no doubt that God rearranged the details to make things easier for Alex, and in turn, for us.

Alex’s appointment went remarkably smoothly, as he interacted nicely with his hygienist and dentist and handled the cleaning and check-up with complete calm. His hygienist commented that Alex keeps getting better and better every time she sees him, which was encouraging. An added bonus was that Alex had no cavities, so he doesn’t need any additional work and doesn’t need to go back for another six months. Despite the changes to the original plans, or perhaps because of those last-minute changes, Alex adapted and handled them better than we could have anticipated.

The following day, Alex was scheduled for music therapy. As I have explained in previous blog entries, Alex is still adapting to having music therapy at his therapist’s office instead of having in-home sessions. After sensory issues overwhelmed Alex for the last session, his therapist decided to do the next session at our home. As I expected, Alex did very well in the more comfortable home setting for this most recent music therapy session.

Besides the session going well, we were also thankful Alex was at home for another reason. Shortly after his therapist left, I could hear the local tornado sirens sounding, and the television weather reports issued a tornado warning. Since Alex has anxiety about tornadoes, we calmly took him to our basement and reassured him that we were safe there. Fortunately, the tornado warning did not last long, and the tornado that caused the warning to be issued was small and far from our home. However, had we gone to the music therapist’s office that day, we would have been driving home with the tornado sirens blaring and Alex likely having a meltdown all the way home in the car. Once again, we felt blessed that God had arranged, or rearranged, the plans in our favor.

Seven years ago this month, we made our most difficult decision as parents to have Alex hospitalized for debilitating anxiety. After trying for months to help him ourselves and unable to find anyone locally who knew how to help, we took him to a facility in an adjoining county. As upsetting as that time was, we know that God had arranged those plans, too. From that difficult experience, we gained a team of dedicated professionals who knew how to help Alex and how to support us as parents.

Through the guidance of the hospital social worker, we learned how to navigate the state system of getting disability services. In addition, we learned the value of having medical power of attorney for Alex and were blessed to have an attorney friend who came to our home on a Sunday afternoon to draw up the needed paperwork right away. The psychiatric nurse practitioner assigned to Alex has the reputation of knowing more about adults with autism than anyone in our area, and she continues to oversee his medications. After this time of crisis, we gained an excellent case manager to act as Alex’s advocate and oversee his state disability services, a phenomenal behavioral therapist to help him deal with anxiety, and a trusted respite caregiver who treats Alex as a friend. Additionally, we were able to reconnect with his outstanding music therapist after taking a break due to Alex’s anxiety.  God knew that we needed all of these people in our lives, and He brought them to us to help make Alex better.

Although things seemed to be falling apart at the time, God was assembling all the pieces and putting them together for us in ways we had never considered. Whenever I fret about what the future holds for Alex, I need only to look back at the past to see how God has always provided what we need. Certainly, there is no reason to worry because I believe that His hand will continue to move people and circumstances where they need to be. Moreover, I have no doubt that God’s plans for Alex are better than I can even imagine.

“‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’” Jeremiah 29:11

Censorship

Many autism parents have felt great frustration as the government seems to have little interest in pursuing why autism rates are rising rapidly, what causes autism, and what can be done to help those affected by autism. However, one Democratic congressman seems intent on making sure no one has access to information questioning potential connections to vaccines. Recently, U.S. Representative Adam B. Schiff from California sent open letters to the CEOs of Amazon, Facebook, and Google expressing his concern that these major Internet entities are promoting “products and content that discourage parents from vaccinating their children, a direct threat to public health.” [To read this letter, please click here.]

Describing these Internet sites as a “primary source of information” for many Americans, Congressman Schiff, indulging in hyperbole, urges these Internet companies to recognize their responsibility by not adding to this “growing public health catastrophe.” Apparently not trusting his constituents nor any other Americans to use critical judgment when seeking information online, Rep. Schiff wants to ensure any information contradicting the complete safety of vaccines is eliminated from Amazon and social media sites, including YouTube, Pinterest, and Instagram, as well as Facebook and Google. He worries that “even parents and guardians who seek out accurate information about vaccines could unwittingly reach pages and videos with misinformation” and be unable to make decisions for themselves regarding vaccine safety. By presenting only one side of the issue, he hopes to make all parents compliant in vaccinating their children.

Jumping on the pro-vaccine bandwagon, CNN business writer Jon Sarlin posted an online article, “Anti-vaccination conspiracy theories thrive on Amazon,” on February 27, 2019. [To read this article, please click here.] Like the congressman, the writer indicates concern for those who may not be able to think for themselves and wants to limit the information to only one point of view. He states, “But perhaps more disturbing from a public health and misinformation perspective, there were also books [on Amazon] that people simply searching for information––new parents, for instance––could mistake for something offering neutral information accepted by the public health community…” However, insisting upon banning books sets a dangerous precedent for our society.

Not surprisingly, when Amazon removed anti-vaccine documentaries from its streaming service, Amazon Prime Video, CNN gleefully reported this news and seemed to take part of the credit for this act of censorship. On March 1, 2019, Jon Sarlin wrote another article, “Anti-vaccine movies disappear from Amazon after CNN Business Report.” [To read this article, please click here.] While the reporter was pleased that Amazon had removed these videos, he expressed concern that Amazon continues to sell books offering an alternative position.

According to CNN, a Facebook spokesperson explained that they have “taken steps to reduce the distribution of health-related misinformation on Facebook, but we know we have more to do. We’re currently working with outside experts on additional changes that we’ll be announcing soon.” One wonders what constitutes “health-related misinformation” and what medical training these “outside experts” have. In a more decisive action to limit point of view, Pinterest announced a temporary ban to block all vaccine searches. Clearly, social media is acceding to the pressure put to bear by those who want only pro-vaccine perspective presented.

In another online article posted March 7, 2019, Wired describes changes Facebook will make. [To read this article, please click here.] In “Facebook Will Crack Down on Anti-Vaccine Content,” Louise Matsakis explains that Facebook has announced that they will no longer promote anti-vaccine information through ads or recommendations. Furthermore, they will make this topic less prominent in search results and news feeds, reducing the rankings of pages and groups that “spread misinformation about vaccines.” In addition, Facebook is examining ways to provide information from “expert organizations” regarding vaccines.  Similarly, Instagram will not recommend content or hashtag search results they deem as “vaccine misinformation.” This suppression of information should be worrisome to those who value critical thinking. As novelist George Orwell predicted, through government officials, the mainstream media, and social media that want to dictate what is “misinformation” and what is not, “Big Brother is watching you.”

To give Rep. Schiff his due, he probably has good intentions and believes that he is protecting those he deems not able to think for themselves. In his press release regarding his letters to the social media giants, he strongly asserts his faith in vaccines: “The scientific and medical communities are in overwhelming consensus that vaccines are both effective and safe. There is no evidence to suggest that vaccines cause life-threatening or disabling diseases, and the dissemination of unfounded and debunked theories about the dangers of vaccines pose [sic] a great risk to public health.”

However, Rep. Schiff apparently has not read the information on the government’s own Centers for Disease Control and Prevention’s website, or he would realize that evidence indicates the potential for vaccine harm. [To access this site, please click here.] Specifically, the MMR (Measles, Mumps, Rubella) vaccine can cause “deafness, long-term seizures, coma, or lowered consciousness, and brain damage.” The Varicella (Chickenpox) vaccine can cause “infection of lungs (pneumonia) or the brain and spinal cord coverings (meningitis).” The DTaP (Diphtheria, Tetanus, and acellular Pertussis) vaccine can cause “non-stop crying, for 3 hours or more (up to about 1 child out of 1,000)”; “seizure (about 1 child out of 14,000)”; and ‘high fever, over 105 degrees F (about 1 child out of 16,000).” In addition, the CDC site warns of the potential side effects with any vaccine: “As with any medicine, there’s a very remote chance of a vaccine causing a serious injury or death.” Clearly, vaccines are not as safe as Rep. Schiff and the media would like everyone to believe. Parents should be aware of potential risks––no matter what they are––before they vaccinate their children.

One even wonders why the media wants to remove the alternative views. In the Wired article, the writer cited information in The Atlantic that noted the “majority of anti-vaccination content on Facebook appears to originate from only a handful of fringe sources.” While I question that assessment, if they believe this to be true, they should have nothing to fear from a few they deem as unreliable sources. Moreover, despite Rep. Schiff’s concerns that anti-vaccine information is leading to a “growing public health catastrophe,” there appears to be no evidence of this impact.

As Louise Matsakis notes in the Wired article, “It’s not yet clear whether the proliferation of anti-vaccination content online has led to a significant decrease in vaccination rates in the United States.” Specifically, she cites CDC data that shows that the number of children under the age of three who have received the first dose of the MMR vaccine “has remained steady for years.” If, indeed, those anti-vaccine views essentially have no effect, why must they be silenced?

Until a definitive cause has been established for autism, nothing should be ruled out completely. In order to make informed decisions, we must have all the information, not just what politicians and the media have determined that people in our free society can know. We must have access to many viewpoints without censorship and continue to seek the truth. As Jesus said in John 8:32, “And you will know the truth, and the truth will set you free.”

“Then everyone who has eyes will be able to see the truth, and everyone who has ears will be able to hear it.” Isaiah 32:3

Dealing with Detours

“Detour, there’s a muddy road ahead. Detour, paid no mind to what it said. Detour, oh, these bitter things I find. Should have read that detour sign.” ~ “Detour” by Paul Westmoreland

In last week’s blog entry, I described how Alex became agitated during music therapy and responded by pounding on the therapy room door. Essentially, he was probably trying to communicate that he wanted to get out of that room. He was overwhelmed by sensory stimuli––nearly falling out of his unsteady chair and adapting to a new fan––along with having to wait while listening to others’ concerns about the office bathroom being out of order. After redirection to use his hands to play bongos instead taking out his frustration on the door, he was able to calm himself and finish the session successfully.

Although I could have dismissed that situation as an isolated incident, I know Alex well enough to be certain that he would have trepidation about the next music therapy session. Not wanting him to use the door for a percussion instrument again, I considered ways to prevent a repeat performance. As Alex’s parents, Ed and I have always tried to smooth his path in life by removing any obstacles we can and by preparing him for those we cannot remove. However, we also know that life often presents sudden detours that he may have to endure.

When Alex was younger, he would become anxious if he saw a detour sign along the road. He knew this meant that his beloved routine routes would change, and that made him fret. To ease his concerns, I would remind him of an old song my dad likes to sing. From the back seat of the car, we would hear Alex imitating Grandpa by singing in a deep voice, “Detour, there’s a muddy road ahead…” Somehow singing about the detour calmed his fears and made him less worried about having to change course.

If a simple song could help him cope, I knew that Alex could learn other ways to deal with situations that take him by surprise. During his behavioral therapy session last week, we discussed with his therapist the circumstances that led up to Alex getting overwhelmed at music therapy. While his therapist sympathetically understood why Alex had become upset, she also helped him to understand that he can control his reactions when he feels out of control. After working with Alex for more than five years, she not only knows him well, but she also knows how to bring out the best in him.

As she went through the chain of events that led up to his upset, she offered him ways to keep himself calm through deep breathing, repeating positive affirmations (Alex’s favorite: “Everything will be all right.”), and asking for help. By asking him questions, she was able to discern what was really bothering him. No, the new fan did not upset him; in fact, he liked it. Yes, he was upset about the chair tipping and worried that he might fall. In addition, she discovered something he had not told me: the room was too hot. Since Alex is very sensitive to temperature changes, that alone could have set him off.

After getting input from Alex, she and I worked with him to brainstorm ways to make the next session better for him. Since the heat seemed to bother him, I told him that he would wear a short-sleeved shirt instead of a long-sleeved shirt for the next session. In addition, since he didn’t like having to wait, we would plan to get there right before the scheduled time instead of a few minutes early. Finally, his therapist, who is familiar with the music therapy office from having meetings there, suggested asking his music therapist to bring a chair from the conference room. She remembered that those chairs were sturdier than the folding chair in the session room and less likely to tip. After talking with her, both Alex and I felt more confident about going to the next music therapy session.

Because Alex’s music therapist has also worked with him for more than five years, I knew that he would be flexible about making changes to help Alex. After sending him an email explaining Alex’s concerns and the potential solutions we had brainstormed, he immediately called me on the phone and enthusiastically agreed with our ideas. Moreover, he had a better suggestion: instead of moving a chair from the conference room, he would move Alex’s sessions to the conference room. Since that room is larger and has a table for Alex to set his drink, as well as sturdier chairs, he thought the conference room would be a good change. If the new setting did not seem to help, he kindly offered to resume providing Alex’s therapy sessions in our home.

After telling Alex about the new venue for music therapy, he seemed a bit nervous about the change. However, I explained the advantages of the conference room, and he was willing to try. Just to make sure we were aware he wasn’t thrilled about this detour, he waved “the claw,” a gesture he uses to let us know he’s not happy by lifting his arm, bending his wrist at a 90 degree angle, and shaking his hand in the air in a way reminiscent of the 80’s “Walk Like an Egyptian” dance. After waving “the claw” once at me and once at his music therapist, he was cooperative, and his therapist described the session as “fantastic” with no other negative behaviors. Alex had detoured into the conference room and decided the new route was more scenic than the old one. By being understanding and willing to accommodate Alex’s sensory issues, his therapist was rewarded with a cooperative client.

Since autism and anxiety make navigating life more difficult for Alex, he relies upon the adults he trusts to help him cope with circumstances that make him nervous. We are certainly blessed to have a wonderful support team of professionals who not only sympathize with our concerns but who also actively seek ways to make Alex’s life easier and to teach him how to deal with the unexpected situations that make him uneasy. Sometimes, something as simple as changing setting can make a difference, assuring Alex that, indeed, everything will be all right.

“Show me the right path, O Lord; point out the road for me to follow.” Psalm 25:4

Searching for Signs

Last Thursday, I was sitting in the waiting room during Alex’s music therapy session when I heard a knocking sound. As I listened, I could tell that the sound was coming from the direction of the therapy room where Alex was supposed to be singing and playing keyboard. At first I thought perhaps he or his music therapist might be playing a drum, but then I realized the sound was definitely a hand knocking on a door, and I was certain that Alex was responsible for the insistent knocking.

Although I never want to interfere with his therapists’ sessions, I also want to provide back-up for them if he’s being uncooperative. Consequently, I quietly walked back to the therapy room and stood outside the door, listening and trying to assess what was happening. Standing in the hallway, I could hear Alex continuing to knock on the closed door from the inside of the room as his therapist gently tried to redirect his behavior. Since Alex wasn’t responding, I decided to knock on the door, let myself in, and try to help the situation.

While Alex seemed a bit surprised to see me, his therapist looked relieved that I was there. He explained that Alex had been fine until his chair had tipped and he had almost fallen out of it. To be honest, that folding chair had worried me the first time I saw it because it’s not particularly sturdy. Because of OCD, Alex tends to fixate on things that happen and takes longer to get over them. He was likely replaying that moment of fear of falling, despite his therapist’s reassurances that he was all right.

When his therapist asked Alex for a reason why he was knocking on the door, Alex kept responding, “Nothing.” I suspect that Alex may have been dealing with anxiety by hitting the door instead of his therapist (which is a good thing) or seeking attention or trying to escape the setting by knocking on the door and hoping to be let out of the room. Perhaps a combination of these was the catalyst for Alex’s insistence on knocking on the door. When Alex is upset, he has trouble explaining what he’s feeling. However, his therapist’s calm approach didn’t seem to make Alex stop his behavior.

Using my middle school teacher voice, I firmly told Alex, “Knock it off!” After asking him what he was doing and getting no reply, I told him that pounding on the door was a dumb thing to do because it was annoying and could hurt his hand. Wondering if his therapist thought I wasn’t handling Alex properly because I was too blunt, I looked over Alex’s shoulder to see his therapist covering his face, trying to conceal his laughter from Alex. At least he found me amusing and didn’t seem to disapprove of my methods. On the other hand, Alex knew I wasn’t happy with his behavior, so he stopped knocking on the door, and he wasn’t laughing.

Then his therapist mentioned that Alex seemed to need to move his hands, so he had offered for Alex to give him “high fives,” but Alex would only lay his hands gently over his therapist’s palms. That was actually a good sign of self-control on Alex’s part: he didn’t use this opportunity to slap his hands hard to let his therapist know he wasn’t happy. Instead, I suggested that his therapist get one of the bongo drums for Alex to play and get rid of his nervous energy. While Alex wasn’t keen on the idea at first, I asked him to play fifty times with his left hand, then with his right hand, then with both hands. By incorporating numbers into the activity, he was willing to cooperate. After some drumming, Alex was calm and ready to finish the session on a good note by singing the familiar “Goodbye” song that ends every therapy session.

Even though I felt bad that Alex had exhibited challenging behaviors during the session and that I had intervened, I sensed that his therapist welcomed my support and some insights I shared. For example, I noticed that the therapy room has a new fan, which may have over-stimulated Alex with its appearance, sound, and feel since he is especially sensitive to touch and sound. In addition, before the session ever started, Alex’s patience was tested because he had to wait for his therapist, who needed to finish his lunch quickly and to text another client’s mother, which meant that Alex’s session didn’t start exactly on time, as he prefers. Also, the bathroom at the office was out of order, which understandably seemed to upset all the employees, who were discussing this in the waiting room in front of Alex. Even though he didn’t need to use the restroom, Alex seemed concerned that other people weren’t happy about the broken toilet.

While knocking on the door wasn’t the right thing to do, Alex was so overwhelmed that he didn’t know what to do. By stopping to analyze the situation, I could figure out the source of his behavior, redirect him, and reassure him that everything would be fine. Moreover, I followed my motherly instincts––which I know God directs––to go back to the therapy room not only to support his therapist but also to support Alex. I had read the signs correctly.

The next day, I had been grocery shopping and realized that I had lost my credit card. After a quick search of my purse, our house, and my car––aided by my perpetually calm and logical husband––I decided to go back to the store to see if I had dropped it. After retracing my steps in the parking lot and store, I went to the customer service desk to see if someone had found my card. Disappointed that they did not have my card, I began planning to call the credit card company to cancel my card. However, I decided that I would give the parking lot one more search.  As I prayed for God to help me find my credit card, I decided to stop and stoop so that I could get a better view. Suddenly, I saw a ray of sun shining on something on the ground. Walking over, I realized that the sunshine was reflecting off the metal chip of my credit card lying on the parking lot where my car had been parked previously. I don’t know how God could have answered my prayer any better or more dramatically––as if the heavens opened up and, thankfully, showed me the way.

Although I sometimes think that God is too busy to be concerned with the minute details of my life, last week’s incidents reminded me that He is always present. If God can give me signs about how to handle Alex or how to find a lost credit card, surely I can trust that He will always show me the paths I need to take to fulfill the life He has planned. All I need to do is be still, pray for help, and wait for His guidance.

“Now then, stand still and see this great thing the Lord is about to do before your eyes.” 1 Samuel 12:16

Virtual Reality as Therapy for Autism

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

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

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

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

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

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

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

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

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

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