Making Good Choices

 

When Alex first began behavioral therapy, the primary goal was to teach him to deal with his anxiety and aggression. However, as he has learned to manage these issues, his behavioral therapist has shifted the focus to helping him improve his social skills, a common difficulty for people with autism. To teach him appropriate ways to interact with others, we practice at home by discussing how he should behave and by using social stories so that he knows what he should and should not do. Moreover, we give him opportunities to practice what he’s learned by taking him to public places, such as restaurants, stores, and concerts. During these outings, we have been pleased that Alex demonstrates that he has learned well the lessons his social stories have taught. On the other hand, I have been astounded by the rudeness of some of the people we encounter out in public. While my temptation has been to say, “My son has autism, what’s your excuse?” I realize that they have not had the benefit of therapy that has taught him to interact appropriately. Consequently, I’d like to share some of the social skills lessons for those who could benefit from what Alex’s behavioral therapist calls “Making Good Choices.”

USE YOUR CALM DOWN SKILLS

Because Alex can become anxious and overwhelmed in certain situations, he needed to learn techniques to help calm him so that he doesn’t have meltdowns. He can listen to music, do deep breathing exercises, and/or count to ten in various languages (English, Spanish, French, German, and Turkish) to help him settle down. Although he may need to be reminded about these techniques when he’s upset, Alex can use them effectively to manage his anxiety. Last week, we encountered someone who could also benefit from these calm down skills when we were going with Alex’s behavioral therapist, Jennifer, for our weekly outing to practice social skills. As we approached the fast food restaurant where we were headed, I saw a fire truck and ambulance with flashing lights blocking our path and knew we would have to take an alternate route. Apparently, my action angered another driver who didn’t see why I had to turn, and I could tell from his facial expressions and from my limited lip reading skills that he wasn’t happy with me. To make sure I knew he was upset, he gave me the middle finger gesture. As Jennifer observed, “He wasn’t very friendly, was he?” While I put calm down skills to use so that I didn’t return any hostility, I realized that rude man should have been using his fingers to count instead of to insult me. Certainly, he needed some calm down skills so that he could make better choices.

USE YOUR MANNERS

We have worked with Alex to use polite phrases, such as, “Please,” “Thank you,” “You’re welcome,” and “Excuse me,” and he is still mastering saying them at the appropriate times and saying them loudly enough to be heard. However, I’ve noticed that many people who cannot use autism as an excuse also seem to have not mastered these skills. For example, we have practiced with Alex the scenario of saying “Thank you” when someone holds a door open for him, but I have found that some people seem to forget their manners when I’ve held doors open for them and say nothing to me. In addition, we’ve taught Alex to get out of people’s way when we’re in grocery store aisles or waiting in line, but I’m amazed by the people who stroll along, seemingly oblivious or even not caring that they are in someone else’s way. Also, Alex has learned by playing board games to wait his turn and to be ready when it is his turn so that he doesn’t make others wait. Sadly, some adults apparently have not learned this courtesy lesson, as I discovered in Panera Bread the other night when a couple held up the entire line, taking their sweet time to decide what they wanted and then taking unnecessary time to pay for their food, never once apologizing for their rude actions. Without a doubt, these types of inconsiderate people need to use their manners.

DON’T STARE

While Alex still struggles with making eye contact, a common issue found in people with autism, at times he finds something or someone interesting enough that causes him to cast a lingering look. Often, he may find someone’s voice engaging, or he may find children’s behavior amusing, and he watches them in delight. However, we remind him that staring is not polite. Apparently, not all parents teach their children this lesson. The other day, Alex, Jennifer, and I were at Burger King for our Friday social skills outing, and Alex had decided that he wanted to order his food himself. As he struggled a bit to order, the cashier was very sweet and patient with him, but I noticed two teenage girls staring at him and smirking. While my motherly protective instinctive reactions ranged from wanting to smack them to saying sarcastically, “Take a picture, it lasts longer!” to wanting to explain that he has autism, I realized that nothing I could say or do would teach these mean girls a lesson. Fortunately, Alex was oblivious to their rude behavior because he was so busy trying to use his manners. Following his lead, I used my calm down skills and my manners, and I didn’t stare back at them. As much as their behavior was hurtful, I could also feel sorry for them because unlike Alex, they either had not had loving people teach them how to act appropriately, or they were not working as hard as he is at using social skills. Not only am I thankful that Alex is trying to make good choices, but also that he never seems to notice those around him who fail to make those good choices. Despite the obstacles autism has put before him, he keeps striving to become a better person, and that good choice makes us proud.

“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” Galatians 6:9

A New Thing

 

As someone who likes to plan things down to the smallest details, I become frustrated when things don’t go as planned or when unexpected events arise, making me feel unprepared and anxious. In raising a child with autism, I have learned that I can make all the plans I want, but at the last minute, things may change suddenly to derail those plans. Consequently, life with Alex has taught me patience and flexibility. Most importantly, I have learned that God’s plans are always better than mine, and I need to allow Him to guide me so that I make the best decisions for Alex.

While waiting two and a half years for a day program that we had thought would be ideal for Alex, we kept hoping that Alex’s name would soon come to the top of the waiting list. As time passed, we sensed that his enrollment would not be imminent, which was disappointing because we thought that was the direction we were supposed to go. Instead, we worked with our case manager to develop an alternative program to help Alex make progress, adding music and recreational therapy and finding an agency that could provide respite care that better suited our needs than the previous agency had. In addition, our case manager found a new smaller day program located less than five minutes from our home for us to consider. While we were waiting for what we thought was the ideal day program, we were going to keep Alex busy and moving forward in developing his skills.

Two months ago the day program finally contacted us to let us know that Alex’s name had come to the top of the waiting list. However, we no longer felt that this program was the best placement for him now. The program we put in place for him as we were waiting, essentially our Plan B, had turned out even better than we had expected. God had led us to the right people who could help Alex. Therefore, we were not going to make drastic changes by setting aside what has been working well just so that Alex could attend the day program. After discussing all the pros and cons with our case manager and Alex’s behavioral therapist who agreed with us, Ed and I believed that turning down the offer of the day program was the right decision.

Although we were a little concerned about closing a door, we discovered that God had opened another door for us. About the same time, the day program near our home offered to teach Alex computer skills on a one-on-one basis. To start, he would go there for an hour one day a week, and he could increase the time and number of days as he acclimated to the new setting. This program sounded ideal because of its flexibility, convenience, and accommodation of Alex’s interests and abilities. However, once again, we were told we would have to wait a while to get this program started. Having waited over two years for the other program and nearly a year to get respite care started from this same agency, I decided that I could wait patiently. I knew that when the time was right, things would eventually fall into place.

Two weeks ago, the new day program contacted me, anxious to get started working with Alex on computers. The person who was arranging the details had just been transferred to the office here in town, and she was eager to get things rolling. Quickly, she arranged training with Alex’s behavioral therapist to learn how to work best with him, and she arranged a meeting with Alex and me to discuss the program she had planned for him and to answer any questions we had. While I was pleased that we finally seemed to be moving forward on this program, I was a little taken aback by how suddenly things were being put into motion after being on hold for a while.

Also, to enroll Alex, the agency needed paperwork showing that he had had a recent physical examination and a TB test. At first, this detail sent me into brief tailspin mode, as I thought we’d have to arrange for Alex to have a TB test and knew that I had no paperwork from his doctor regarding his physical this summer. After a little online research, I found that the Minute Clinic where we’ve taken Alex previously could do a TB test, which set my mind at ease. However, I then discovered that a chest x-ray could substitute for a TB test. Fortunately, before Alex had his wisdom teeth removed in November, he had to have a physical exam, an EKG, blood tests, and chest x-rays to make sure he was healthy enough for anesthesia. Because his regular doctor has reduced his hours, we took him to a new doctor for his physical exam. Fortunately, her practice offers online medical records for patients. After logging on to Alex’s account, I discovered everything I needed for the day program, and I printed out copies of the test results and doctor’s notes. Even though I had been reluctant to take Alex to a new doctor for his wisdom teeth exam, I realized that God had led us to her so that we would be able to access all the information we needed to enroll Alex in the computer class. God knew what we would need in the future and led us in the right direction.

After meeting with the young woman who will be teaching Alex computer skills and feeling positive about how nicely she interacted with him, I’m hopeful that this new addition to his schedule will work well. Of course, we always worry about how he’ll adapt to new situations and new settings, and we hope that he will put to good use the social skills we’ve worked hard to instill in him. As for Alex, he seems really excited that he’s going to be starting computer school this week. While he begins something new, we pray that everything goes smoothly and that this is one more piece of the puzzle that will allow him to reach his potential. In the meantime, we trust God, who made this path smoother by guiding and changing our plans, will lead Alex where he’s supposed to go and will give him the hope and future He promised.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:19

Vulnerability

 

This week U.S. News and World Report published an article online entitled “Is the U.S. Prepared for a Growing Population of Adults with Autism?” with the subheading, “More than 50,000 individuals with autism transition into adulthood each year.” [To read this article, please click here.] Parents of adult children with autism can easily respond to that essentially rhetorical question with a definitive no. The article points out that the majority of the more than 1.5 million diagnosed with autism are currently younger than twenty-two years old, and an “autism tsunami” is predicted as more children with autism become adults and need services. Of course, these services are quite expensive, and the article focuses on the staggering costs for taking care of these adults with autism. While that problem certain merits attention, parents of adult children worry more about how safe our vulnerable sons and daughters will be when we are not around to protect them.

In previous blog entries, namely “Protecting Our Children” (September 14, 2014), “Autism and Law Enforcement: A Safety Crisis” (June 9, 2013), and “Autism and Wandering: A Safety Crisis” (May 26, 2013), I have expressed my concerns about how bullies, wandering to unsafe places, and untrained police officers can pose threats to children and adults with autism, citing incidents where those with autism have been badly hurt and even killed. These news stories remind parents that we must be especially vigilant to guard our children with autism from those dangers, including those who may legitimately perceive them as threats. Because of our children’s impaired social skills, limited language, and tendency to wander, they may unknowingly find themselves in dangerous situations.

Around midnight on Christmas Eve in Greenville, South Carolina, police officers arrested a thirty-four-year-old man with autism walking on the sidewalk after he didn’t cooperate with their questioning. [To read this news report, please click here.] With his limited language skills, he couldn’t answer their questions and didn’t respond to their requests. His impaired social skills prevented him from behaving appropriately, and fear likely caused him to run away from the officers, who shocked him with a Taser and handcuffed him. Certainly, his noncompliant behavior made him seem suspicious and perhaps even threatening. However, after discovering that he has autism, charges were dropped against him. Unfortunately, he will carry that memory of an upsetting experience with the law, but this incident has demonstrated the need for police officers to have training in dealing with people with autism.

This week in Austin, Texas, a young man with autism became upset and ran away from his group home early in the morning. [To read this news report, please click here.] Agitated, he began pounding on doors of neighborhood homes. As he attempted to enter a home, the homeowner shot and killed him, fearing for the safety of his family. While this situation is terribly upsetting for everyone involved, many parents of adult children with autism understand how this could happen. When our fully-grown children become upset, their behavior can become so erratic that anyone would see them as threatening. Sadly, this young man with autism lost his life, and the homeowner protecting his family will have to live with this tragedy the rest of his life.

As these recent news reports demonstrate, the world is a dangerous place for people with autism who cannot communicate well and whose impaired social skills affect their behavior negatively. While parents do everything we can to protect our children and keep them safe, they may find themselves in danger. When I read essays written by parents of young children with autism who celebrate the disability and say that they wouldn’t change a thing about their child and that autism is part of their personality, I shake my head. While we love our children with autism unconditionally, we want their lives to be better and safer, but autism makes them vulnerable to dangers we can’t always keep at bay. Autism is no more a part of their personality than cancer or diabetes or any lifelong affliction that takes away from our children’s lives. Consequently, I continue to pray for a cure for autism so that my child and those like him can live life to fullest, participating in the world instead of being a misunderstood outsider. In the meantime, I also pray that God keeps Alex safe until that healing can occur and that He will guide and watch over him when we cannot.

“See, I am sending an angel before you to protect you on your journey and lead you safely to the place I have prepared for you.” Exodus 23:20

Gut Feeling

 

Because so much is unknown about autism, parents of children with autism often rely upon what we sense is the right thing to do when we make decisions for our children. We sometimes think of those instincts as gut feelings, and we move forward based upon the adages of “Go with your gut” or “Trust your gut.” Because my faith leads me to believe that God places those feelings in my gut, I trust those instincts when making choices. While we tend to think of the gut in terms of its actual function as a key component of the digestive process as well as its symbolic identity as a part of decision-making, the role of the gut has expanded in recent research.

More specifically, new research indicates that the gut’s microorganisms (such as bacteria), known as the microbiome, significantly impact the brain. In the article “Gut-brain Link Grabs Neuroscientists” published in Nature on November 12, 2014, molecular biologist Sara Reardon explains that research shows that a connection exists between bacteria in the gut and behavioral conditions, such as autism. [To read this article, please click here.]

In 2014, the U.S. National Institutes of Health spent more than one million dollars on new research through its Human Microbiome Project to study the links between the microbiome and the brain. Through this research project, scientists hope to gain insights into how the microbiome affects humans as it both maintains health and causes disease. On November 19, 2014, neuroscientists shared their research entitled “Gut Microbes and the Brain: Paradigm Shift in Neuroscience” at the annual Society for Neuroscience meeting in Washington, D.C., promoting the significance of the brain-gut connection.

As neuroscientists begin to understand how gut bacteria affect the brain, three possible links have arisen. First, the gut bacteria seem to play a significant role in the immune system. Another potential link between the gut and brain is the vagus nerve that connects the digestive tract to the brain. In addition, the production of bacterial waste in the gut may affect the brain. For example, intestinal bacteria produce the important neurotransmitter GABA. Interestingly, children with autism often benefit from taking supplements of GABA, as it has a calming effect upon them.

Research has shown that children with autism tend to have gut microbiomes different from typical children. Specifically, the Nature article references a 2013 study entitled “Reduced Incidence of Prevotella and Other Fermenters in Intestinal Microflora of Autistic Children.” [To read this article, please click here.] This research focused upon analyzing stool samples of children with autism and typical children and found that children with autism tended to have fewer strains of gut bacteria than typical children do. Consequently, these missing strains likely influence their behavior and health. Moreover, the study found that children with autism had significantly lower levels of some strains of bacteria, particularly Prevotella, which is important for digesting carbohydrates and for metabolizing vitamin B1. Considering that many children with autism seem to crave carbohydrates, perhaps this lack of Prevotella causes them to consume carbohydrate-rich diets, trying to extract nutrients from these foods. In addition, children with autism often respond well to supplementation of vitamin B1, perhaps necessary because their bodies cannot metabolize this vitamin from food. By analyzing the gut bacteria, scientists can potentially determine what is lacking and how to address these anomalies.

Additionally, the Nature article refers to the work of Sarkis Mazmanian, a microbiologist at California Institute of Technology in Pasadena. In Mazmanian’s 2013 study, mice with some features of autism, notably gastrointestinal symptoms and stressed, antisocial behaviors, had lower levels of a common gut bacterium, Bacteroides fragilis, than normal. Also, they had higher levels of a bacterial metabolite, 4EPS, in their blood. When normal mice with leaky gut syndrome were injected with 4EPS, which seeped into the body through the intestinal wall, they also exhibited autistic behaviors.

In response to his research, Dr. Mazmanian notes, “That observation raises the possibility that some people with autism could be supplemented with therapies, such as probiotics, that target the gut instead of the brain, which is a much more complex and inaccessible organ.” Hence, this research offers a different approach to autism; instead of focusing upon treating the neurological symptoms, addressing the digestive tract becomes a potential source for healing. Indeed, many biomedical doctors have recognized the gut-brain connection in autism and have implemented treatments to address digestive issues, such as leaky gut and dysbiosis of the digestive tract, through gluten-free diets, probiotic supplements, and antifungal medications.

As we begin a new year, we anticipate what 2015 will bring. Over time, we have seen progress in Alex that we celebrate and appreciate. Nonetheless, we continue to pray for his complete healing, and this new research gives us greater reason to hope that, indeed, Alex will recover what autism has taken from him. In the meantime, I trust my gut and allow myself to be led by God that we will make the right choices so that Alex can be happy and healthy as we wait.

“My child, pay attention to what I say. Listen carefully to my words. Don’t lose sight of them. Let them penetrate deep into your heart, for they bring life to those who find them, and healing to their whole body.” Proverbs 4:20-22