Searching for Signs

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

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

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

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

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

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

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

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

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

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

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

Virtual Reality as Therapy for Autism

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

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

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

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

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

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

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

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

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

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

Social Skills for Social Media

While social media offers opportunities for parents of special needs children to share information and support, this modern convenience also can allow people to be hurt by intentionally or unintentionally unkind comments. When parents of children with autism make rude remarks, I wonder if they, like their children, may be on the autism spectrum themselves and have difficulty with social skills. Others may be sleep-deprived from taking care of children who stay awake all night, and others are likely understandably upset by the stress of their circumstances. Nonetheless, in order to help each other, we need to remember the power of words and strive to be kind and helpful in what we say to others.

Over the years, I have participated in various online support groups for parents of children with autism. A great deal of what I have learned about autism and parenting children with special needs has come from those wise and caring parents who were willing to share what they have learned from their experiences. Remembering the thoughtfulness of those parents who helped me through the early years of autism, I strive to offer the same support and information I received to other parents of children with autism. However, I’m sometimes surprised when parents of young children with autism deem themselves experts and fail to value advice given by veteran parents. Nonetheless, many of us still share our experiences, hoping to help others.

Last week, a parent shared serious concerns about a child with members of an online support group and asked valid questions while seeking information. Instead of offering sympathy or empathy to a parent in crisis, some seemed more intent on critiquing parenting skills. Perhaps if they couldn’t be nice, they should have been quiet instead. One person kept asking nosy question after nosy question, more like an investigative reporter than a supportive presence. In a sense, this interrogator seemed to be trying to gain all the attention by asking irrelevant questions. At one point, I was waiting for this person to ask the silly question from the movie The Breakfast Club: “Can you describe the ruckus?” After all those questions, this person, who is not a parent, had nothing helpful to offer, which confirmed my suspicion of simply seeking attention.

Another issue that arose in this online conversation was the topic of medications, which is a touchy subject in autism. Certainly, many parents would prefer not to medicate their children. However, for some with autism, medication proves essential to well-being and safety, addressing depression, anxiety, and aggression. Some parents of younger children with autism eschew the use of medication, yet they don’t realize the need until their children get physically bigger and stronger, becoming more difficult to handle when they have meltdowns. Those who tout only using behavioral therapy need to remember that therapy takes time to have positive effects. I know this because Alex has been in behavioral therapy for more than six years with a fantastic therapist; the benefits take time to achieve. Moreover, some parents are on long waiting lists for therapists and cannot get the help they need immediately. Therapy may only be one piece of the puzzle.

Later, some caring parents brought compassion to the discussion. Addressing the parent by name, offering not only good, specific suggestions but also sharing their own experiences and empathy, these parents provided what the parent in crisis was seeking: understanding and guidance. Perhaps these parents reflected upon their own situations and remembered what they wanted to know in similar situations and what had been helpful to them. By being gracious instead of critical, they offered the support that should always be present in a social media support group. Responding to their kindness, the parent in crisis was equally gracious, thanking everyone for the advice and support.

Last week, the Indiana Resource Center for Autism at Indiana University posted one of their terrific social stories on their Facebook page. Written by Kristi A. Jordan, these short stories intended for children with autism provide helpful tips regarding how to interact with others. For Valentine’s Day, the social story suggested, “It is nice to make a card for every person, even if you do not like them. If you do not like someone, remember that is a secret. You should think it, but don’t say it. Keep that thought a secret.” Perhaps, all of us, not just children with autism, should heed that advice. As Alex’s behavioral therapist reminds him in a useful handout: “Before you say something, THINK: Is it true, helpful, informative, necessary, and kind? If not, keep it to yourself.”

Addressing the issue of how to deal with rude people on social media, especially trolls, autism mom Cathy Jameson recently wrote an outstanding essay for Age of Autism. [To read this essay, please click here.] While she specifically mentions the heated debate regarding vaccines, she offers good suggestions for handling any topics of contention. These provided good advice for me at a time I was ready to straighten someone out on social media for making comments I saw as hurtful and unfounded. Instead, I chose discretion and opted not to engage in the debate. As Cathy Jameson advises: “Sometimes it’s best to just walk away and let it go.”

However, she also offers helpful recommendations when engaging in dialogue with others: “When you do say something, I’d suggest doing so without emotion and name calling. When one resorts to name calling, the chance to politely prove a point is immediately lost.” Moreover, she offers a valuable tenet for dealing with others online that also applies in real life: “Encourage people. It’s simple and what we prefer to do.” We may not always agree on every topic, but we can be agreeable in how we treat others.

"Do you have the gift of speaking? Then speak as though God Himself were speaking through you. Do you have the gift of helping others? Do it with all the strength and energy that God supplies. Then everything you do will bring glory to God through Jesus Christ. All glory and power to Him forever and ever! Amen." 1 Peter 4:11

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