The Autism CARES Act

Last Monday, on September 30, 2019, President Donald Trump signed the Autism CARES Act into law. As Natasha Anderson from Cleveland’s Fox 8 News reports in an online article titled, “President Trump signs ‘Autism CARES Act’ providing $1.8B in funding for programs,” this law offers 1.8 billion dollars over five years for autism programs. [To read this article, please click here.] Specifically, three government agencies––the Centers for Disease Control and Prevention, the National Institutes of Health, and the Health Resources and Services Administration––will use these funds toward autism research, education, early detection, and treatment.

According to an online article written by Michelle Diament titled, “Congress Considers Renewal of Autism Act,” and published online February 11, 2019, on Disability Scoop, the Autism CARES Act enables continued federal funding for autism. [To read this article, please click here.] Autism CARES is the acronym for Autism Collaboration, Accountability, Research, Education, and Support.

However, this is not the first federal government act passed to help people with autism and their families. According to the “Autism CARES Act Issue Brief” published on the Autism Society website, President George W. Bush signed the Combating Autism Act into law in 2006.  [To read this summary, please click here.] This law was designed to coordinate federal agencies in response to significant increases in the numbers of children diagnosed with autism. Since that law was signed in 2006, the rate of autism has substantially increased even more––approximately six hundred percent.

The recently signed Autism CARES Act replaces the original Autism CARES Act that was due to expire on September 30, 2019. The 2014 Autism CARES Act was a bipartisan bill both the Senate and the House of Representatives passed unanimously. Under the previous ACA, $260 million of government funds were allocated annually for autism research and services. Not only does the new version of the ACA provide significantly more funding, but the current law also addresses the needs of adults with autism, using the phrase, “across the lifespan.”

Another bipartisan effort, the Autism CARES Bill of 2019 was sponsored by Representatives Chris Smith, a Republican from New Jersey, and Mike Doyle, a Democrat from Pennsylvania. Similarly, in the Senate, the bill was introduced by Senator Bob Menendez, a Democrat from New Jersey, and Senator Mike Enzi, a Republican from Wyoming.

In a statement, Representative Smith noted, “The problem of ‘aging out’ of services is a real hurdle every parent or caretaker of a child with autism inevitably faces. But autism is a lifetime neurological disorder, and adults with autism continue to need their services.” Additionally, he stated that the Autism CARES Act will help provide support to “an estimated 50,000 persons with autism each year who ‘age out’ of critical assistance programs,” a crucial need since, “many individuals and communities are unprepared for this transition.”

The Autism CARES Act addresses three primary areas: research, data, and training. Federal funds support research into biological, genetic, and environmental aspects of autism as well as seeking potential biomarkers for autism. In addition, researchers seek the best methods for treatment and intervention in autism. Under the direction of federal agencies supported by the Autism CARES Act, data is collected to estimate the number of children with autism in various regions of the United States and to help identify risk factors for autism. Along with research and data collection, the Autism CARES Act supports training professionals to screen, diagnose, and treat people with autism, including addressing physical and behavioral issues. Moreover, the Autism CARES Act funds agencies that provide parents with support and information regarding access to services for their children with autism.

President Trump demonstrated his heartfelt concern for autism families as well as his enthusiastic support for the Autism CARES Bill, posting the following comments on Twitter: “Today I was proud to sign the Autism CARES Bill! We support research for Americans with Autism and their families. You are not forgotten, we are fighting for you!”

Certainly, the Autism CARES Act serves as an impressive example of how politicians can work together amicably for a noble cause. Hopefully, greater emphasis upon the needs of adults with autism as well as the increased funding will reap great rewards for the autism community. Perhaps valuable research can find a cause and a cure for autism, thereby eliminating a need for future Autism CARES Acts and answering the prayers of many families whose lives have been touched by autism.

“Rulers lead with my help, and nobles make righteous judgments.” Proverbs 8:16

Breaks and Breakthroughs

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

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

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

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

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

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

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

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

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

Pleasant Plateau

For the past few weeks, every evening after Alex goes to bed, Ed will remark in a questioning way, “He’s been good all day?” When I nod and answer in the affirmative, Ed will say, “Knock wood, he’s doing really well,” and we will both rap our knuckles on the nearest wooden table. Knowing that I really shouldn’t buy into this superstitious ritual and should give proper credit, I add, “Praise God!”

Because Alex’s progress has not been a linear path as we have seen setbacks along the way, we fear speaking about the good could somehow make him regress. When he is dealing with anxiety that causes his behavior to decline, we pray mightily for change. However, when Alex is sweet and calm, as he has been lately, we worry that doing anything differently might cause an unwanted change.

For years, we have prayed for God to heal Alex. At times, frustrated by regressions and waiting, I have been jealous of those who have experienced complete healing from autism. Researching diligently, I have thought if I kept reading and praying, I could find a cure for Alex. While some children with autism have been healed by chelation therapy to remove heavy metals, vitamin B12 shots, special diets and nutritional supplements, and other methods, none of these gave us the miracle I desperately sought. Nonetheless, the efforts have been worthwhile because these interventions did make him better.

In addition, I have been frustrated that acne has left mild scars on Alex’s face, even though he cooperated with methods to treat the inflammation and never picked at his face. He also has a small bald spot left behind by a minor scalp infection, folliculitis, that we treated immediately under medical supervision. Thinking that Alex has suffered enough from the obstacles autism has presented, I hate that he has small scars as reminders of previous infections.

However, perhaps these minor flaws are evidence of healing, reminders that sickness is not a permanent state. Over time, the acne scars have faded their angry redness, and the bald spot has shrunken from the size of a silver dollar to that of a penny. I cut and comb his hair to cover the small bald spot so that no one really sees it, and the acne scars along his hairline are fading with nightly applications of Mederma scar cream and time. Most importantly, these slight imperfections don’t bother Alex a bit. The only mirror he uses is a toy mirror that softens and slightly distorts in its reflection, much like that described in I Corinthians 13:12: “Now we see things imperfectly, like puzzling reflections in a mirror…”

Nonetheless, we still battle infection and its lasting effects. Two years ago, Alex had a bad case of yeast infection in his mouth and throat that ruined his healthy and hearty appetite. While we have been praying that he would regain his love of nearly all foods, he still chooses to eat a rather limited diet. Even after the yeast infection has been controlled by weekly doses of anti-fungal medication and after working with a fantastic speech therapist to overcome sensory issues related to eating, Alex is still a picky eater, which is not uncommon in autism. However, sometimes he will surprise us and ask for a food not usually part of his chosen menu and devour it happily.

Since we have seen him overcome other issues with time, we wait expectantly for the day when he returns to his varied appetite. Furthermore, we are thankful that he has regained the weight he lost from his self-selective diet because he has cooperated with drinking nutritional non-dairy protein smoothies I make for him every evening to increase his daily calorie intake. Every week as I weigh him on our old-fashioned doctor’s scale, I say a prayer that I can push the bar a little farther to the right, and God has been faithful, as Alex has continued gaining weight at a healthy pace.

Along with gaining weight, Alex has also shown reduced anxiety lately. He’s not just content but happy, skipping through the house and grinning from ear to ear. He has once again enjoyed going places, and he’s chatty and interactive, making appropriate comments that intrigue and amuse us. For example, he nicely asked me the other day to adjust his wristwatch because “It’s too close to the armpit.” Mind you, it was just a little above his wrist, but the exaggerated description made me laugh. The professionals who work with him have also noted how well Alex is doing and have commented on how pleasant and observant he is, asking good questions. Last week, his companion came to stay with him while Ed and I enjoyed lunch at a restaurant. When we returned, she told us that he had been “perfect.” She also shared that when she asked him who was winning the baseball game he was watching on television, he told her––knowing that she’s not a fan of the sport––“The team that has the most points is winning.” She found his literal explanation amusing; he was trying to explain something he thought she didn’t know.

When we reach these pleasant plateaus where things are going smoothly and every night and day I thank God that Alex is doing so well and Ed and I knock on wood in hopes of keeping the trend going, we closely analyze circumstances to make sure nothing happens to change the peaceful existence we gratefully savor. However, sometimes things occur that we cannot control. A few weeks ago, we learned that one of the medications that helps keep Alex calm is no longer available. Despite the best efforts of a dedicated pharmacist, we cannot get that medication, so the nurse practitioner who prescribes Alex’s medications has given us a plan to wean him off that drug.

While my first instinct was to panic that this change would upset Alex and cause a setback, I had to remind myself that God sometimes shoves me forward with both hands because He has plans to move Alex into something new and better. Although I would have preferred to enjoy the pleasant plateau a bit longer, not being able to get this medication means that we must make a change. Remembering that Alex has always responded to medication reductions favorably, I prayed that this change would be equally smooth for him. As we have decreased his doses over the past few weeks, he doesn’t show any negative side effects. If anything, he actually seems even better with this medication reduction, and we pray that once we take him off completely, he will continue to do well and perhaps even get better. I have to believe that God was showing us that Alex no longer needed this medication because the weaning process has gone so well, and Alex continues to be calm and good natured.

Perhaps healing looks different than I had imagined. Certainly God’s ways and plans are better than mine. Maybe God reminds me that all my searching for a cure is not nearly as important as trusting Him to make Alex better. Definitely, I have witnessed His hand in our lives, guiding us and healing Alex in unexpected ways that make us know He was responsible. For us, healing and progress have rarely been the sudden and dramatic changes I prayed for and expected, but instead the culmination of small signs that reveal God has been there all along. Knock wood and praise God!

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19

Connections Between the Brain and Heart in Autism

Recently, two interesting research summary articles published online at Spectrum indicate that children and adults with autism display characteristic differences in heart rates, suggesting the autonomic nervous systems of their brains also function differently. In “Nerves that control heart rate may contribute to autism,” published February 19, 2019, Nicholette Zeliadt describes contrasts between heart rate changes in typical children and those with autism. [To read this article, please click here.]

Referencing “Developmental trajectories of autonomic functioning in autism from birth to early childhood,” published March 2019, in Biological Psychology, this Spectrum article explains research done at Brown University in the United States. [To read this research article, please click here.] Under the direction of Stephen Sheinkopf, associate professor of psychiatry and human behavior, researchers studied 118 children from ages one month to six years by measuring their heart and breathing rates. Of this group, 12 had autism, and the other 106 did not have autism. They were assessed every 6-12 months.

Normally, a person’s heart rate increases when inhaling and decreases when exhaling, a condition known as respiratory sinus arrhythmia (RSA). The autonomic nervous system controls these slight changes. These changes in breathing and heart rate are also linked to regulating emotions and paying attention to social cues, which are often impaired in autism.

The researchers found that all of the children showed similarly decreasing heart rate, which occurs over time with normal development. However, the children with autism were slower than their typical peers to develop the normal fluctuation of heart rate that occurs with breathing. Moreover, this phenomenon was most obvious after 18 months of age when behavioral symptoms of autism often emerge. By the age of 6, children with autism catch up with their typical peers in this trait (RSA) and demonstrate similar fluctuation of heart rate with breathing.

After observing the differences in heart rates and breathing between typical children and those with autism, researchers concluded, “RSA is a marker of functional status in autism rather than a cause of social deficits.” They suggest that the impairment of the autonomic nervous system occurs when autistic behaviors appear. Moreover, they note that children with autism have issues with physiological regulation––such as breathing and heart rate––that develop over time. Because this research only involved children who were exposed to drugs before birth, the researchers plan to study other groups of children to see if heart rate and breathing differences occur more widely.

In another recent Spectrum article, published May 17, 2019, and titled “Nerves that control heart rate may be offbeat in autistic adults,” Jessica Wright describes similar research involving adults. [To read this article, please click here.] She summarizes an article, “Reduced heart rate variability in adults with autism spectrum disorder,” published in Autism Research on April 10, 2019. [To read this research, please click here.]

Under the direction of Adam Guastella, professor of child and youth mental health at the University of Sydney in Australia, researchers examined resting heartbeats of 110 adults aged 16-41. Half of the participants had autism, and the other half included typical adults. All of the people in the study had no known heart conditions, and none of them were taking heart medications.

Usually, people’s resting heartbeat varies, showing flexibility and readiness to respond to environmental changes. However, researchers discovered that in adults with autism, the resting heart rate rarely varied. Moreover, those with autism had a higher baseline heart rate than the typical people. The lack of change in heart rate suggests issues with the autonomic nervous system responsible for reacting to social stimuli as well as heart rate and breathing. Researchers note that these results may explain issues with social skills common in autism as well as heart problems that can lead to early death in people with autism.

Of the participants in the study who had autism, half of them were taking medications, specifically antidepressants and antipsychotics. However, there was no difference in the heart rates between the adults with autism taking medications and those with autism who were not taking medications. Nonetheless, researchers indicate the need for further study to examine the impact of medications upon those with autism.

While both of these research studies indicate connections between heart rates, the autonomic nervous system, and autism that begin in infancy and continue through adulthood, more research clearly needs to be done. For example, what triggers at age 18 months may be responsible for the emergence of autistic behaviors? What is the connection between impairment of the autonomic nervous system and the apparent need for antidepressant and antipsychotic medications commonly prescribed for autism? What can be done to regulate heart rates so that adults with autism do not die young from heart conditions? Certainly, gaining knowledge regarding autism proves helpful, but more research must be done before we can hope to find a cure for autism.

“Jesus replied, ‘Love the Lord your God with all your heart and with all your soul and with all your mind.’” Matthew 22:37

Bears and Blanket

Before Alex was born in December 1991, I made two teddy bears for him. After seeing how tiny he was as a newborn, I was worried that those bears intended to comfort him might scare him instead with their big eyes and slightly creepy smiles. Nonetheless, he seemed to like them, smiling back at them as he grew older. Once he was bigger, he wanted those teddy bears, whom he designated in his practical way as “Red Bear” and “Blue Bear” for the color of the bows around their necks, beside him in his bed every night. When I would check on sleeping Alex, I would find Red Bear and Blue Bear ever vigilant, always awake and keeping watch over my boy.

Over time, Alex apparently outgrew the bears, who were relegated to his bedroom closet for many years. Most people would have thrown them away after all that time, but I felt sentimental about those bears that I had lovingly sewn and stuffed while Alex was stuffed in my pregnant belly. Moreover, knowing that Alex often rediscovers items from his past and enjoys the nostalgia of remembering his childhood, I thought he would be upset if those bears ever disappeared.

Recently, those bears found themselves relocated from the dark closet to their formerly honored positions in Alex’s bed. Checking on Alex before I went to bed one night, I discovered Red Bear and Blue Bear on Alex’s pillow, one on each side of his peacefully sleeping head. Since they were not there when I said bedtime prayers with him before he went to sleep, Alex must have dragged them out of the closet sometime after we recited bedtime prayers and said, “Goodnight, sleep tight, don’t let the bedbugs bite! Love you!” in unison, as we do every night.

While sleeping with teddy bears is not something typical twenty-seven year old young men should be doing, Alex’s life is not typical. In most ways, he is a little boy in an adult’s body that doesn’t function properly because of autism. His hands don’t cooperate, so he relies upon us to help him with getting dressed, grooming himself, and fixing food. The words don’t come easily, so he trusts us to speak for him when he can’t tell what he needs. Sensory issues make the world too loud, too bright, and too irritating for him, but he knows we do our best to ease the distractions and soothe him. For these and other reasons, he cannot live independently and needs our help to function on a daily basis. Alex's life is not typical in any way, shape, or form.

Perhaps he sought out those teddy bears for additional comfort. Although they are a bit faded and worn with a few stitches I added by hand years later to reinforce the seams that had come undone because they were so well loved, their big eyes, silly grins, and colored bows are still familiar. Their stuffing has flattened over time, but they are still soft. I’d like to think that as they surround Alex’s precious head, they protect his mind and give him peace.

This winter, Alex also began sleeping with a quilt I made for him when he was a little boy. Knowing his love of numbers and letters, I found materials for the quilt squares filled with these beloved symbols and stitched them together for him as I had the bears a few years earlier. Since the quilt was made for a smaller version of Alex, it cannot cover his current nearly six-foot frame. However, he is content to have the “1997 blanket,” as he has dubbed it, cover his feet and keep them warm.

Not long ago, I asked him why he liked sleeping with the bears and quilt again, and he smiled and told me, “Because Mommy made them for Alex.” While these comfort items may serve as nostalgic reminders of a simpler time in his life, I think Alex now appreciates the effort I made by sewing the bears and quilt especially for him. Maybe he sees them as symbols of the all-consuming love I have for him that wants to protect him, to comfort him, to make his life happy and content.

As I continue to pray that God will completely heal Alex of autism so that he can live a fulfilling and independent life, I hope that he someday will not need the comfort of Red Bear and Blue Bear and the 1997 blanket. If they wind up back in the closet as fond reminders of an earlier time, I will be content knowing that they served their purpose. In the meantime, I hope he views these old, familiar bits of cloth stitched together as a reminder of his mother’s unconditional love for her precious son.

“So give your father and mother joy! May she who gave you birth be happy.” Proverbs 23:25

Individualized Support Plan

A week and a half ago, we met with Alex’s case manager and behavioral therapist for his regular quarterly meeting. As I have mentioned in previous blog entries, those who receive support services from the state meet every three months with their teams of professionals to go over progress and goals and to discuss any concerns. We have been blessed with outstanding people who work with Alex to develop his skills and who truly care about our family. The primary topic for this particular meeting was to go over Alex’s individualized support plan, which is similar to an individualized educational plan (IEP) developed by special educational personnel for special needs students.

Last year, Indiana’s Bureau of Developmental Disabilities Services implemented Person-Centered Planning that requires gathering a great deal of information in hopes of providing better services for individuals with developmental disabilities. [To read my April 22, 2018, blog entry, “Person-Centered Planning,” explaining this process, please click here.] Although Alex’s case manager has only been working with us for a little over a year, she has done an excellent job getting to know him and collecting the details needed to develop this comprehensive report. Currently, Alex’s person-centered individualized support plan is 32 pages long and will likely increase with the additions we made at our last quarterly meeting.

Prior to our meeting, his case manager sent me a draft copy of the plan, which I read and summarized for Ed, who trusts my judgment. Essentially, Alex’s goals are to continue progress in the following areas: improving his communication skills, engaging in community activities, developing coping skills to deal with anxiety, and achieving greater independence. Considering that autism impacts his language, social, and motor skills, as well as anxiety, these goals make complete sense and are worthwhile pursuits.

Reading the positive statements in the document noting Alex’s achievements and progress over the past few years was quite encouraging. However, his case manager wisely worded these comments, noting that continued success requires keeping vital supports in place, such as ongoing behavioral therapy and music therapy. Those of us who know Alex well recognize how valuable his therapists are to his continued progress toward these essential goals.

After going through the draft copy of the plan prior to the meeting, I made notes regarding changes or additions that might give more insights into Alex and his current interests and concerns. For example, the report noted that Alex’s hardest time of day was between 9:00-10:30 A.M. While this was true several years ago because his bedtime medications had worn off and the morning doses had not yet taken effect, this is thankfully no longer true. In fact, Alex has improved so much that he only takes two medications at bedtime and awakens pleasant natured. Fortunately, he doesn’t have any time of day that is difficult for him, and we are grateful for this significant progress.

However, he still struggles with sensory issues that can trigger anxiety. For example, because his hearing is quite acute, noises can startle him, and he can become overwhelmed by loud music or sounds. If we are out in public, and volume annoys him, we may have to leave. In addition, he has had difficulty recently with weather bothering him, especially rain. I have read that dogs don’t like to go out in the rain, not primarily because they don’t like getting wet, but because their ears are sensitive to the sounds of raindrops. Similarly, I suspect that Alex hears the sound of rain amplified to a level that makes him prefer to stay indoors. With this in mind, we asked his case manager to add the following to his report: “Inclement weather, such as rain, extreme cold, and wind, can bother Alex, due to sensory issues. He also has anxiety about thunderstorms and tornadoes.” Hopefully, these added details will enable others who work with Alex to understand his weather-related concerns.

Additionally, we requested that a few more details be added to the “About Me” introduction to the document under the subheading “What people like and admire about me.” While his case manager had done a good job of explaining tasks Alex does to help around the house, we wanted the report to describe Alex’s positive traits and personality a bit more. Trying to be objective, I considered what other people have said and noticed about Alex. With these observations in mind, we asked that Alex be described in the report as pleasant and amusing as well as noting that he likes to share interests with others and strives to do his best. His behavioral therapist agreed with these descriptors of Alex, and his case manager confirmed the value of including these details in the report.

Finally, in the “Social and Spirituality” section, we felt that addressing Alex’s faith in God was necessary to understanding him. Although church services can prove overwhelming to Alex with sensory issues, such as the vibration of the church organ and the echoing sounds of a sanctuary, he has developed a strong personal faith reinforced through our religious teaching at home. Every night, he asks God to bless a long list of people who are important to him––from family and friends to his support team to former Chicago Cubs baseball player Sammy Sosa. Consequently, we requested that his report include the following statement: “Faith is important to Alex, and he regularly says bedtime prayers.”

Even though Alex’s individualized support plan can be daunting to read, especially as it details the obstacles autism has imposed upon his life, the positive tone regarding the progress he has made with time and support offers encouragement for the future. As we keep working to develop his communication, social, and motor skills, as well as to develop his coping skills and work toward greater independence, we continue to pray for God’s healing. Furthermore, we hope that someday Alex will no longer need a support team or an individualized support plan, knowing that with God all things are possible.

“Jesus looked at them intently and said, ‘Humanly speaking, it is impossible. But with God everything is possible.’” Matthew 19:26

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

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

Testing Testing

As a classroom teacher for more than thirty years, one of the few aspects of my job I truly disliked was giving standardized tests to my students. In fact, retiring from teaching brought relief that I would no longer have to give these dreaded assessments. Knowing these evaluations were often worded in ways that were confusing to my students or bored them with long reading passages that failed to hold their interest, I questioned how accurately these tests could measure their abilities. As I watched some students who lacked motivation rush through the tests simply to get done and others struggle through every minute trying to finish in time, I knew their scores would not reflect what they really knew. Moreover, the general atmosphere of anxiety prevalent during testing among students and staff was upsetting and counterproductive.

My mistrust of standardized tests has only been heightened as the parent of a child with autism. Having been present for most of Alex’s evaluations, I know that they cannot measure accurately what he actually knows and can do. Consequently, on traditional intelligence tests, he scores quite poorly. Nonetheless, we place little value on the IQ values assigned to him, knowing that Alex is smart in ways that the tests fail to measure.

Recently, an enlightening article in The Atlantic addresses the shortcomings of using traditional cognitive testing with people who have autism and offers promising alternative methods. In “IQ Tests Are Biased Against People With Autism,” published December 31, 2018, author Nicholette Zeliadt notes, “…research has confirmed that some autistic people––especially those who speak few or no words––have abilities that standard tests of intelligence underestimate or overlook.” [To read this article, please click here.] In addition, the subtitle of this article states, “For those with poor verbal and motor control, traditional intelligence exams can be a faulty way to measure real cognitive ability.”

Recognizing problems of using traditional testing methods with people who have autism, scientists have recently considered new ways to test cognitive skills. Some have adapted existing tests, while others have developed new tests. In both cases, the goal has been making tests easier to complete for people with autism. Other researchers have employed technology that measures eye movement and brain activity to evaluate skills. While using technology may produce more accurate results, the expense and lack of portability make these methods less accessible.

Although experts cannot reach a consensus about which tests are most useful in evaluating people with autism, researchers note that none of the most commonly used assessments qualify as “a particularly good fit.” In addition, interpreting scores often proves problematic when assessing people who have autism. Many issues commonly associated with autism make testing difficult, such as anxiety, social-communication challenges, restricted interests, and lack of motivation to do boring tasks. Furthermore, poor fine motor control makes pointing, which is required in some tests, difficult, and tests lasting nearly an hour are too challenging for those with attention issues. As Beth Slomine, neuropsychologist at Kennedy Krieger Institute in Baltimore, Maryland, candidly explains, “…the tasks we have that measure cognitive ability are often boring, [and] the tasks don’t always measure what we think they’re measuring.”

At Boston University’s Center for Autism Research Excellence in Massachusetts, researchers have adapted testing for children with autism. To make the process less stressful, the child does not interact with the evaluator. Instead, two pictures are shown side by side on a screen as a recording instructs them to “Look!” Additionally, to keep them interested, pictures of beloved character Thomas the Tank Engine and videos of rockets launching are shown. According to the director of the Center, Helen Tager-Flusberg, “We did that to keep them engaged, to keep them looking––it doesn’t feel like a test.”

Using technology to observe eye tracking, researchers at Bar-Ilan University in Ramat-Gan, Israel, monitor involuntary eye movements as a method of testing people with autism. Under the direction of Yoram Bonneh, associate professor of vision science and optometry, the researchers study “tiny flicks of the eye as it jumps toward something of interest” in people with autism to assess word comprehension. After words are spoken or shown on a screen, two pictures are displayed side by side, with only one matching the given word. Eye movement toward the picture demonstrates word comprehension. This research indicates that adults with nonverbal autism perform as well in this testing activity as typical adults do.

In addition, these researchers show multiple choice questions and answers on a screen without reading them aloud. When the person’s eyes stop on a correct answer, the researchers use this behavior as a measure of cognitive ability. After testing a group of young men with autism who had minimal verbal skills and were thought to be illiterate, the researchers discovered through the testing that these men could actually read. Consequently, this testing method not only proved the young men had the ability to read and understand written text but also demonstrated that their skills had previously been underestimated.

At Rutgers University in Newark, New Jersey, scientists have been using EEGs to test minimally verbal children with autism. As the children watch images immediately followed by hearing a word that may or may not match the picture displayed, researchers use the EEG technology to look for brain activity to indicate the recognition of the image and word. Through this form of testing, the research suggests that the children don’t always connect the words and pictures. Another theory is that children with autism may use other parts of their brains to process what they have seen and heard than typical children do. Nonetheless, using brain wave technology allows scientists to glimpse how the minds work in children with autism.

Clearly, research shows the importance of creativity when assessing people who have autism, considering their special needs and the differences in the ways their brains process information. As Charles A. Nelson, professor of pediatrics at Harvard University and Boston Children’s Hospital notes, “These kids we think are very low functioning, very nonverbal, may have more going on upstairs then we’re giving them credit for.” Indeed, using traditional methods to question those with autism may produce questionable results. Instead, parents, educators, and professionals should seek better ways to assess the skills of people with autism, and more importantly, they must never underestimate the abilities of those whose brains work in mysterious––and perhaps even superior––ways.

“But there is a spirit within people, the breath of the Almighty within them, that makes them intelligent.” Job 32:8

Small Setbacks

A few weeks ago, when we took Alex for his annual physical, his doctor proclaimed him to be in excellent health. Although we suspected this to be true, for Alex had not needed to go to the doctor since his last annual exam a year ago, we were delighted to get such a good report. Nonetheless, the doctor did have one issue for Alex (and us) to work on: eating more calories per day and trying to gain about fifteen pounds. While many of us would be ecstatic to have our doctors give us that advice, we knew this could be challenging for Alex, whose metabolism and level of activity keep him naturally thin. Along with the food aversion issues he’s struggled with for more than a year and a half that caused him to lose weight, gaining weight for Alex is as difficult as losing weight is for most people.

Nonetheless, we took the doctor’s suggestion to heart, trying to find ways to get Alex to eat more and consume more calories. Fortunately, Alex made a real breakthrough around Christmas, suddenly eating a greater variety and quantity of foods, returning to his past habits of eating healthy, instead of limiting himself to cold and smooth foods. He even began asking for old favorites, such as meatloaf and shrimp, and happily devoured them. Thanking God for this Christmas miracle, we thought Alex had made a big breakthrough in overcoming the food aversion that not only made him not want to eat certain foods but also triggered panic attacks at the kitchen table.

Because his doctor understands Alex’s issues well, he recommended adding nutritional supplements, namely Ensure or Carnation Breakfast Essentials, to Alex’s daily diet. Although both of these products contain milk, to which Alex has a dietary sensitivity, I was willing to take a chance that their benefits outweighed the potential concerns about giving him milk products in these supplements. After I added Carnation Breakfast Essentials powder in Classic French Vanilla flavor to Alex’s nondairy shakes made of Rice Dream ice “cream” and coconut milk beverage and strawberries, he seemed to like the taste and was willing to drink three of these shakes every day. I thought we had found a great way to get some calories into him easily.

However, after a few days of these shakes, Alex began complaining of headaches. While I suspected the milk in the nutritional supplements might have been the culprit, I thought a few more days wouldn’t hurt. I was wrong. The more days Alex had the powdered milk supplements, the more irritable he became. Then he started complaining of stomachaches. Although I was fairly certain the source of his pain and grouchiness was milk in the doctor-recommended nutritional supplement, I knew we had to test this theory by eliminating it from his strawberry shakes. Once I removed the milk product from his shakes, Alex stopped complaining of headaches and stomachaches, and he stopped being cranky, which was probably a result of not feeling well. Consequently, we had to abandon the doctor’s simple plan for adding calories and find other ways to help Alex gain weight.

About the same time, and probably not coincidentally, Alex’s wonderful progress in eating a variety of foods was followed by a regression. Unfortunately, he wanted to return to the cold and smooth diet, favoring applesauce, dairy-free yogurt, and non-dairy pudding. Between the bad reaction to the nutritional supplements and the return of food aversion, I was terribly frustrated by these setbacks, even though they were relatively small. Knowing that Alex has an appointment in a few weeks with his doctor to monitor his weight, I am feeling pressure to make sure he puts on some pounds to show that I’m putting forth effort.

Feeling a bit defeated and disappointed, I knew what I had to do. Reminding myself of Philippians 4:13, “I can do all things through Christ who strengthens me,” I resumed my usual determination and began researching other ways. Knowing that Alex likes pudding, I found a great and simple-to-make recipe for peanut butter pudding that can easily be adapted with coconut milk. Full of calories and protein, it offers Alex what he needs. In addition, the recipe came from one of his favorite chefs, the late “Mr. Food,” whom Alex loves to imitate by repeating his motto in a deep voice: “Ooh, it’s so good!” I knew that Alex would be willing to try this new food, especially, if we both said Mr. Food’s motto before he ate it. Fortunately, the peanut butter pudding turned out delicious, and Alex loves it because it is, indeed, “Ooh, so good!”

In addition, I found a different nutritional supplement to try that uses plant proteins instead of milk proteins. While I’m not sure whether Alex will like the taste, we’ll give it a try next week. In the meantime, I keep praying that he’ll resume his healthy and varied diet, as we witnessed the week after Christmas. However, I also know that I need to remain upbeat and calm about Alex’s eating habits so that he doesn’t pick up on my anxiety and add it to his own. If nothing else, I am tenacious about making sure Alex is healthy and happy, and I won’t allow these small setbacks to deter that ultimate goal. Most importantly, I know that God has a plan for Alex, and as the Great Healer, He will make certain that Alex gets everything he needs.

“But as for you, be strong and do not give up, for your work will be rewarded.” 2 Chronicles 15:7