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

Results

As I mentioned last week in my blog post “Modifications,” we had some blood tests run on Alex recently because he has not been his usual energetic and congenial self. Waiting for test results always proves nerve-wracking for me, wondering what the outcomes might reveal. In addition to allergy tests, the doctor ordered a thyroid profile, a complete blood count, and a comprehensive metabolic panel. Basically, if anything were really wrong with Alex’s health, something would show up in one of these tests. As the days passed until our appointment to get the lab reports, I tried to reassure myself that Alex was fine because his appetite had been excellent, even though he has acted lethargic and irritable. One evening, I even convinced him to let me take his temperature, thinking that he would run a fever if he were ill. Fortunately, his temperature was normal, which was a good indication of his overall health.

When we received the results on Friday, we were pleased to find that Alex is remarkably healthy. All of his blood counts are within normal range, which eliminated my fears of anemia or a more serious blood disorder. Thankfully, his metabolic tests showed that his major organs—heart, kidneys, and liver—are all functioning well, too. Glucose levels well within the normal range ruled out my concerns about hypoglycemia or diabetes. Another indicator of his healthy metabolism, the thyroid profile, showed that, unlike me, his thyroid and thyroid hormones all function properly. As I quickly scanned these test results, I breathed a sigh of relief that all of Alex’s numbers fell within range, and the “Out of Range” columns were completely empty. Besides these wellness tests, Alex’s allergy tests were also quite encouraging. The last time we ran food allergy tests on Alex when he was seven years old, his scores revealed that he was sensitive to a number of foods, including milk, wheat, glutens, eggs, green beans, bananas, and a few others. At that time, we put him on the strict gluten-free and casein-free diet, which he has remained on for a dozen years. Before we ran this test again, the doctor advised us that the results would probably not show sensitivity to milk and glutens because Alex has kept them out of his diet for many years. Nonetheless, I thought he might show more food allergies, but this time he only showed strong reaction to lobster, which he rarely eats, and chestnuts, which I doubt he has ever eaten. Also, he showed moderate reaction to barley, which he doesn’t eat because it has glutens, and olives, which he does eat in the form of black olives and olive oil. The good news is that avoiding these foods will be no hardship for him. Besides these foods, he showed reaction to the artificial sweetener Xylitol, the food additive potassium bromate, the pesticides heptachlor and pentachlorophenol, and the plastic additive dibutyl phthalate. Since he doesn’t consume Xylitol or potassium bromate (which is added to baked goods that are not on his gluten-free diet), we don’t need to worry about exposure to these additives. The exposure to chemicals in the air is likely inevitable and difficult to avoid, plus his current behavior is unlikely related to these substances; therefore, we’re not concerned about these findings, either. Basically, all of the data from these tests revealed Alex to be quite healthy, which was comforting.

Even though we were pleased that the results were encouraging, I was a little disappointed that we didn’t have any answers as to why he has been more listless than usual. Somehow I had hoped that we could find a simple solution to the problem that has vexed us the past few weeks. The most telling piece of information we have gained through this process—other than the reassurance that Alex is not physically ill, of course—is that he apparently no longer needs to take melatonin. During the vitamin vacation we have given him the past two weeks to see how he reacted without his various supplements, we discovered that he no longer needs melatonin to sleep, as he previously did. Perhaps he has had too much melatonin in his system, which would explain why he has been less energetic than usual. We plan to keep him off melatonin and hope that his energy level returns to normal. In the meantime, we watch for small signs of improvement and have been pleased to see him sitting upright more during the day instead of crashed on the couch. In fact, Ed commented that yesterday Alex had been the most alert and happiest he'd seen him in weeks, which was a nice change. As we wait for this phase to pass, we are thankful that our prayers for Alex to be healthy have been answered and try to maintain patience, anticipating improvements that restore him to his happy, enthusiastic self.

“Confess your sins to each other and pray for each other so that you may be healed. The earnest prayer of a righteous person has great power and produces wonderful results.” James 5:16

Psychological Assessment

As we have watched Alex deep in thought over the years, Ed and I have often wondered what was going on in his mind. We were treated to a glimpse of his thought processes last week when we took him to a psychologist for testing. In the process of determining Alex’s eligibility for disability benefits, Social Security required that we take him to a psychologist to have his autism evaluated. This wasn’t a real surprise since Alex’s last complete evaluation was at age four when he was originally diagnosed with autism. Because we didn’t disagree with that diagnosis, we never pursued having him re-tested. A few years ago, we did take him to a psychiatrist, hoping to find help for his aggressive outbursts. However, this experience was basically a waste of two hundred dollars and an hour of time. Halfway into the appointment, after I had explained Alex and how autism affected him, the psychiatrist turned to me and said candidly, “Frankly, Mrs. Byrne, I think you know more about autism than I do.” Needless to say, we did not take him back to that doctor. In anticipation of last week’s appointment with the psychologist, I felt some trepidation, not knowing how this session would go, but Alex was excited, seeing this experience as a new adventure.

After asking Ed and me several questions about Alex’s strengths and weaknesses, the psychologist began to ask Alex questions to assess his abilities. Before the appointment, Ed and I had agreed that we would not come to Alex’s rescue by answering for him or prompting him to respond. We wanted him to represent himself accurately. However, we found it hard not to help him because, as Ed commented to me, we always want Alex to shine. Nonetheless, Alex was good natured and pleasant and answered the questions as well as he could. At times he had to twist his hair, or scratch his belly, or look around the room before he could give his response, but he was engaged in the process and was conscientious about doing the best he could. For one of the tests, the psychologist asked him to tell how two words were related. For example, he said apple and banana, to which Alex answered, “Fruits.” When asked about desk and chair, Alex knew to say, “Furniture,” and when given inch and mile, he said, “Measurements.” The next example was a bit trickier. He was asked how a poem and a statue are alike. I racked my brain, trying to think of a good answer, and found out later that Ed wasn’t certain what the definitive answer was, either. Alex thought carefully for a minute and then said, “Structures.” I thought that was a pretty good answer, and the psychologist seemed to find it interesting, too. Later, when given various real-life scenarios, such as what to do if you noticed a fire in a crowded theater or found a stamped and addressed envelope on the street, he was clueless as to how to respond. I’m not sure whether this is a language issue for him or a problem-solving weakness, but at least he didn’t become frustrated.

In another test, Alex was asked to explain the old saying, “Don’t cry over spilled milk.” Like many children with autism, Alex tends to be literal and doesn’t really understand figurative expressions. He began to laugh, though, and I suspect it was because he doesn’t drink milk due to his allergy to dairy products. Spilled milk doesn’t occur in his world. He then asked the doctor what the saying meant. The doctor explained it to Alex, turned to us, and commented, “He has a really great smile.” Next, he asked Alex to guess what time it was without looking at a clock, and Alex said that it was about 12:16. The exact time was 12:09, so his estimate was fairly accurate. To test Alex’s memory, he told him three objects to remember over time: a clock, an iron, and a table. Ed and I knew that he would remember the clock because he loves clocks. Several minutes later when asked what the three objects were, he remembered the clock and table but thought the third one was a desk, which had been mentioned in the association test. Since Alex doesn’t use an iron, and I rarely use one around him, I doubt it had significance for him. Later Ed told me that he couldn’t remember any of the objects, so Alex did better than he did. Another test of his memory involved repeating back strings of random numbers. Ed and I knew that he would do well at this activity because he has memorized hundreds of digits of pi, and we weren’t surprised that he completed this task easily. The doctor, however, seemed impressed that Alex not only could repeat the numbers in the correct order, but he could also recite them in reverse order. After we had also mentioned that Alex’s strengths lie in math, computers, and keyboarding, the psychologist suggested that with those skills, along with his memory and attention to detail, someday he might make a good computer systems analyst. We were pleased that he could see potential in Alex and not just the weaknesses. Moreover, we found this glimpse into Alex’s mind enlightening and uplifting because he did even better than we had expected. By stepping back and allowing him to be himself, Ed and I enjoyed watching Alex shine—all by himself, demonstrating the gifts God has given him.

“A man’s mind plans his way, but the Lord directs his steps and makes them sure.” Proverbs 16:9