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