Seek and Find

In last week’s blog entry, I wrote about the need for sameness in autism and the problems that can arise when certain comfort items are no longer available. Thanks to the thoughtfulness of an autism dad, The Little Blue Cup Project emerged, allowing parents to connect with others and track down rare items their children need. The online article I cited from Vox [To read this article, please click here.] also described problems that occur when certain foods are taken off the market. Since many people with autism can be picky eaters due to sensory issues and/or have food allergies and sensitivities, being able to obtain specific favorite foods is a priority for many parents whose children may reject substitutions.

Specifically, the article cites the example of a mother who orders food items in bulk quantities for her adult son who will only eat a few items, such as Laughing Cow cheese spread, two flavors of Capri Sun drinks, and Nesquik chocolate drink mix. When her local grocery stores stopped carrying Laughing Cow cheese, she wrote to the company, and they sent her a refrigerated package containing four dozen boxes of her son’s favorite cheese. In addition, she states, “I stockpile everything as if I can’t source them in the shops, and he will not have alternatives.” Although shopping for groceries should not have to require research and detective work, for many parents of children with autism, it does.

Because of sensitivities to cow’s milk, Alex has been on a dairy-free diet for more than twenty years. Recently, I had noticed that the specific type of coconut milk beverage I use to make pudding and smoothies for Alex has become more and more difficult to find in grocery stores. Fortunately, the company’s website lists places where their products may be purchased; however, the specific flavor Alex prefers was no longer available in the shelf stable package we had bought for several years.

With some more online searching, I discovered that our local Target store carries the same brand and flavor of coconut milk beverage in milk cartons in the refrigerated case. What is especially helpful is that Target’s website not only tells in what aisle their products may be found but also how many of that particular item are currently in stock.

Thankfully, Target carries the elusive coconut milk beverage as well as the same brand’s coconut milk vanilla yogurt alternative that Alex eats every day. While other local stores had either stopped carrying this product or were often sold out, probably due to greater demand and limited supply, Target has come through for us once again by providing Alex’s favorite dairy-free yogurt. Even better is that they offer this yogurt at a lower price than what we had been paying at grocery stores.

After solving the issues with coconut milk beverage and yogurt, I thought I could rest a bit from tracking down foods for Alex. However, a couple of weeks ago, our local grocery store that offers a wealth of special diet foods suddenly stopped carrying Rice Dream nondairy frozen dessert, the ice cream equivalent Alex has eaten for more than twenty years. After checking their website and discovering that no local stores carry this specific product, I wrote an email to the local grocery store’s manager requesting that they order this product. Within a day, the manager sent me a very cordial response explaining that their supplier no longer carries the Rice Dream frozen dessert. He even went to the trouble of checking to see if he could get the item from other suppliers but had no luck. Moreover, he assured me that if their supplier began carrying this product again, he would be happy to order it for me. While I certainly appreciated his kind efforts, I knew that I would have to find an alternative to yet another unavailable food item that Alex eats every day.

Once again, I was grateful for the ease of Internet searching, which led me to two alternatives for Rice Dream’s frozen dessert. So Delicious, whose coconut milk beverage and yogurt have been elusive but finally found at Target, make a coconut milk “ice cream” and so does a company called Nada Moo. After scanning their websites, I found that So Delicious non-dairy frozen dessert is available at two of our local stores as well as Target, while the Nada Moo is only found at Target. Again, the ever-helpful Target website allowed me to find the aisle number for these dairy-free treats as well as the number they currently had in stock before I ever arrived at the store.

Of course, my search for dairy-free ice cream would have been in vain if Alex rejected the coconut milk substitutes. Thankfully, he seems to like the flavor and texture of the coconut milk ice cream as much if not more than the rice milk ice cream he’s eaten all these years. Now I can buy his coconut milk beverage, yogurt, and ice cream all at the same place as well as have the opportunity to make a Target run, which I always enjoy!

Thinking that my current quest to find things for Alex was over, I was disappointed to discover last week that the shampoo he has used for many years has also been discontinued. Once again, I turned to my laptop for a search of stores that might have his shampoo and was able to get some good leads. Knowing that he is sensitive to textures and smells, I knew I had to buy up as many bottles of his shampoo as I could find to store for future use. Feeling like a hoarder, I stopped at three different stores and bought a total of nine bottles of his shampoo, which should last us for a while. Hopefully, before we run out, I’ll be able to locate an acceptable substitute or he’ll be less picky about his toiletries of choice.

Among the various challenges autism presents is the need for sameness, which tests parents who are trying to find specific foods and items our children need and prefer. Fortunately, the Internet makes our searches for these favorite things easier as we try to help our children cope in a world that changes faster than they would like. Consequently, we pray for their healing so that they can learn to be more flexible and willing to accept alternatives when the originals are no longer options. In the meantime, we autism parents hope that every time we seek, we shall find what our children need.

“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

Censorship

Many autism parents have felt great frustration as the government seems to have little interest in pursuing why autism rates are rising rapidly, what causes autism, and what can be done to help those affected by autism. However, one Democratic congressman seems intent on making sure no one has access to information questioning potential connections to vaccines. Recently, U.S. Representative Adam B. Schiff from California sent open letters to the CEOs of Amazon, Facebook, and Google expressing his concern that these major Internet entities are promoting “products and content that discourage parents from vaccinating their children, a direct threat to public health.” [To read this letter, please click here.]

Describing these Internet sites as a “primary source of information” for many Americans, Congressman Schiff, indulging in hyperbole, urges these Internet companies to recognize their responsibility by not adding to this “growing public health catastrophe.” Apparently not trusting his constituents nor any other Americans to use critical judgment when seeking information online, Rep. Schiff wants to ensure any information contradicting the complete safety of vaccines is eliminated from Amazon and social media sites, including YouTube, Pinterest, and Instagram, as well as Facebook and Google. He worries that “even parents and guardians who seek out accurate information about vaccines could unwittingly reach pages and videos with misinformation” and be unable to make decisions for themselves regarding vaccine safety. By presenting only one side of the issue, he hopes to make all parents compliant in vaccinating their children.

Jumping on the pro-vaccine bandwagon, CNN business writer Jon Sarlin posted an online article, “Anti-vaccination conspiracy theories thrive on Amazon,” on February 27, 2019. [To read this article, please click here.] Like the congressman, the writer indicates concern for those who may not be able to think for themselves and wants to limit the information to only one point of view. He states, “But perhaps more disturbing from a public health and misinformation perspective, there were also books [on Amazon] that people simply searching for information––new parents, for instance––could mistake for something offering neutral information accepted by the public health community…” However, insisting upon banning books sets a dangerous precedent for our society.

Not surprisingly, when Amazon removed anti-vaccine documentaries from its streaming service, Amazon Prime Video, CNN gleefully reported this news and seemed to take part of the credit for this act of censorship. On March 1, 2019, Jon Sarlin wrote another article, “Anti-vaccine movies disappear from Amazon after CNN Business Report.” [To read this article, please click here.] While the reporter was pleased that Amazon had removed these videos, he expressed concern that Amazon continues to sell books offering an alternative position.

According to CNN, a Facebook spokesperson explained that they have “taken steps to reduce the distribution of health-related misinformation on Facebook, but we know we have more to do. We’re currently working with outside experts on additional changes that we’ll be announcing soon.” One wonders what constitutes “health-related misinformation” and what medical training these “outside experts” have. In a more decisive action to limit point of view, Pinterest announced a temporary ban to block all vaccine searches. Clearly, social media is acceding to the pressure put to bear by those who want only pro-vaccine perspective presented.

In another online article posted March 7, 2019, Wired describes changes Facebook will make. [To read this article, please click here.] In “Facebook Will Crack Down on Anti-Vaccine Content,” Louise Matsakis explains that Facebook has announced that they will no longer promote anti-vaccine information through ads or recommendations. Furthermore, they will make this topic less prominent in search results and news feeds, reducing the rankings of pages and groups that “spread misinformation about vaccines.” In addition, Facebook is examining ways to provide information from “expert organizations” regarding vaccines.  Similarly, Instagram will not recommend content or hashtag search results they deem as “vaccine misinformation.” This suppression of information should be worrisome to those who value critical thinking. As novelist George Orwell predicted, through government officials, the mainstream media, and social media that want to dictate what is “misinformation” and what is not, “Big Brother is watching you.”

To give Rep. Schiff his due, he probably has good intentions and believes that he is protecting those he deems not able to think for themselves. In his press release regarding his letters to the social media giants, he strongly asserts his faith in vaccines: “The scientific and medical communities are in overwhelming consensus that vaccines are both effective and safe. There is no evidence to suggest that vaccines cause life-threatening or disabling diseases, and the dissemination of unfounded and debunked theories about the dangers of vaccines pose [sic] a great risk to public health.”

However, Rep. Schiff apparently has not read the information on the government’s own Centers for Disease Control and Prevention’s website, or he would realize that evidence indicates the potential for vaccine harm. [To access this site, please click here.] Specifically, the MMR (Measles, Mumps, Rubella) vaccine can cause “deafness, long-term seizures, coma, or lowered consciousness, and brain damage.” The Varicella (Chickenpox) vaccine can cause “infection of lungs (pneumonia) or the brain and spinal cord coverings (meningitis).” The DTaP (Diphtheria, Tetanus, and acellular Pertussis) vaccine can cause “non-stop crying, for 3 hours or more (up to about 1 child out of 1,000)”; “seizure (about 1 child out of 14,000)”; and ‘high fever, over 105 degrees F (about 1 child out of 16,000).” In addition, the CDC site warns of the potential side effects with any vaccine: “As with any medicine, there’s a very remote chance of a vaccine causing a serious injury or death.” Clearly, vaccines are not as safe as Rep. Schiff and the media would like everyone to believe. Parents should be aware of potential risks––no matter what they are––before they vaccinate their children.

One even wonders why the media wants to remove the alternative views. In the Wired article, the writer cited information in The Atlantic that noted the “majority of anti-vaccination content on Facebook appears to originate from only a handful of fringe sources.” While I question that assessment, if they believe this to be true, they should have nothing to fear from a few they deem as unreliable sources. Moreover, despite Rep. Schiff’s concerns that anti-vaccine information is leading to a “growing public health catastrophe,” there appears to be no evidence of this impact.

As Louise Matsakis notes in the Wired article, “It’s not yet clear whether the proliferation of anti-vaccination content online has led to a significant decrease in vaccination rates in the United States.” Specifically, she cites CDC data that shows that the number of children under the age of three who have received the first dose of the MMR vaccine “has remained steady for years.” If, indeed, those anti-vaccine views essentially have no effect, why must they be silenced?

Until a definitive cause has been established for autism, nothing should be ruled out completely. In order to make informed decisions, we must have all the information, not just what politicians and the media have determined that people in our free society can know. We must have access to many viewpoints without censorship and continue to seek the truth. As Jesus said in John 8:32, “And you will know the truth, and the truth will set you free.”

“Then everyone who has eyes will be able to see the truth, and everyone who has ears will be able to hear it.” Isaiah 32:3

Search: Alex and Google

 

In a previous blog entry, I explained that one of the best ways to find out what Alex is thinking is to check his Google search history. Because his speech is still delayed, he doesn’t always verbalize what is on his mind. In fact, if I ask him what he’s thinking, he’ll often blurt, “Nothing!” to avoid having to explain his thoughts. Truthfully, most of the time, I’m not too surprised by the list that appears in his search history, and I’m relieved to discover that he’s not searching topics that would make me worry about him. Last night, I took a quick peek at his most recent searches just to confirm that he's using his iPad and Internet privileges appropriately and was pleased to discover that he is. Moreover, I found some of his current topics of interest pretty interesting.

For example, one of Alex’s favorite pastimes is eating, especially at restaurants, which his search history confirmed. Alex had searched Google for two nearby restaurants, Culver’s, which is one of his favorites, and The Port, a drive-in restaurant open only in the summer. He had also searched the Panda Express menu, probably curious about what they serve and what he can eat there on his gluten-free and casein-free diet; a Panda Express is currently under construction in our town. Besides these restaurant searches, he also had typed in “how to stop being on a gluten-free diet.” I guess he hopes that someday he won’t have to avoid glutens.

Another common theme in Alex’s searches is celebrities. To illustrate, he looked up the birthdays of former Chicago Cubs baseball player Sammy Sosa and singer Celine Dion. Alex includes Sammy Sosa in his prayers every night, and I’m guessing he was curious about Celine Dion after seeing her on The Voice television show. He also searched for information about his favorite college basketball player, Valparaiso University’s star player, Alec Peters. In addition, he wanted to know how much country singer Miranda Lambert and the former host of the game show The Price Is Right, Bob Barker, weigh. Because Alex needs to quantify people by numbers, he likes to know their birthdays, ages, heights, and weights. However, he also knows that asking this information can be considered rude, but Google can tell him this information without making him seem nosy.

One of his search topics could seem cryptic, but I’m fairly certain that it was also related to his interest in celebrities––dead or alive. He will frequently ask about certain famous people and want to know if they’re still living. He finds the musical group the Beatles especially interesting since two of the Fab Four are dead. If he hears something about one of them, he’ll invariable ask, “Is he one of the dead Beatles or one of the alive ones?”

Yet another one of Alex’s interests––statistics––appears in his search history. For instance, he was looking up long words, specifically those with ten letters and sixteen letters. Combining his love of mathematics with his love of meteorology, he had Googled “13 most likely states to have tornadoes.” Also, he studies gas prices religiously, so I wasn’t surprised to see that he was checking out Gas Buddy, which provides current gas prices at various stations in the area.

However, Alex is the ultimate Gas Buddy, whose eagle eyes seek out gas prices as we drive along and compare and contrast the different prices at different places. He’ll excitedly announce from the back seat, “The gas prices at Speedway in Chesterton are four cents higher than the gas prices at Family Express in Valparaiso!” We find that his longest and most enthusiastic spoken sentences typically revolve around gas prices. This is a far cry from when he was younger and got upset by gas prices, throwing things from the back seat or kicking our seats if he wasn’t pleased. In fact, we had figured out how to get around town without ever passing a gas station just to avoid the wrath of Angry Gas Buddy in the back seat. Thankfully, that’s another phase that has disappeared.

Perhaps because Alex can now verbalize better what he wants to communicate, he doesn’t get upset about gas prices and other concerns. Apparently, he finds language acquisition as interesting as I do. Specifically, he had searched the following two questions: “When did language start?” and “When did you [meaning himself because he still confuses his pronouns] start having language?” Alex’s development of language has been interesting because he mastered reading and then writing before speaking. Maybe as his speech has been developing (especially with regard to commenting on gas prices), he has been more curious about his early language skills.

In reviewing Alex’s search history, probably the most curious topic I found was helicopter prices. Hopefully, when he discovered how expensive they are, he realized that he can’t afford to buy one. However, the most thought-provoking question in his search history was “How long is a long time?” He may have wondered about that because we frequently tell him that something happened a long time ago when he asks about some historical event. For his mind that needs to quantify an amount, he was likely seeking some specific range of years. Unfortunately, Google’s answers could not give him the precise details he wanted. Maybe he could put together those two topics, as in, it will be a long time before Alex can save up enough money to buy a helicopter.

While we are fortunate that Alex, unlike many people with autism, can speak and tell us what he is thinking, we are even more fortunate that we can get a glimpse of his very active mind by monitoring his online activity. Although he may claim that he has nothing on his mind, his Google search history proves otherwise, reassuring us that he lives up to his childhood nickname, Mr. Curious, and still loves to learn something new every day.

“So I set out to learn everything from wisdom to madness and folly. But I learned that pursuing all this is like chasing the wind.” Ecclesiastes 1:17

Special Requests

As I have explained in previous blog entries, I have been blessed to be able to teach on a part-time basis since Alex was born so that I can be home with him in the afternoon. An added blessing is that Ed is able to arrange his schedule as a college professor to teach afternoon and evening classes, allowing him to be home with Alex in the morning while I’m at work. I’m sure that some of my colleagues wonder what I do all afternoon while they’re still teaching, but I keep plenty busy dealing with Alex. Besides home schooling him, I find that I spend quite a bit of time fulfilling his special requests. In some ways, he’s like a giant toddler (Although I’m quite thankful that he’s a potty-trained one!) who relies upon me to help him because his poor fine motor skills make some tasks quite difficult for him. Unlike most young men his age, he still needs his mommy. Fortunately, he has learned to ask nicely for my help, which makes waiting on him a more pleasant responsibility.

One of the tasks Alex requests of me involves finding things. Since our house is usually fairly organized, I’m not certain why he has trouble finding his belongings. On the other hand, I sometimes need to find things for his father, as well, so perhaps this is a genetic and/or learned helplessness. I sometimes wonder if both of them enjoy watching me dig through drawers, sort through papers, or crawl under beds looking for lost items. In fact, I suspect that they sometimes deliberately hide things to send me on wild goose chases or to see if I can, indeed, maintain my reputation as the finder of lost things. Nonetheless, I am quite good at finding things, and Alex knows this. Most recently, he has asked me to find his tape measure, his dictionary, and “picture of Little Alex,” a photograph of him taken when he was in preschool that he carries around as a treasure. After I quickly located all of these items for Alex, he went on his merry way, measuring, looking up words, and reminiscing about himself at age four, at least until the next time he misplaced his things and needed my help again.

Another important role I play is that of Alex’s personal chef. While Alex has always had a good appetite for a variety of foods, one of his new favorite pastimes is to sit and think about random foods he’d like me to prepare for him. One of his favorite requests is meatloaf, the only food he likes as much—“one hundred percent”—as his beloved shrimp. To keep within his gluten-free and milk-free diet, I make his meatloaf with gluten-free rice breadcrumbs, a simple substitution for regular breadcrumbs. Unlike Randy, the little brother in the movie A Christmas Story, who hates meatloaf, proclaiming, “Meatloaf, beet loaf, I hate meatloaf!!”,  Alex loves meatloaf and would probably eat it every day if I made if for him that often. This past week, he had another special menu request: cupcakes. Again, his special diet requires a few adjustments so that he can eat the foods he wants. Fortunately, Betty Crocker’s gluten-free yellow cake mix can be made with dairy-free margarine as a tasty treat, especially when iced with Duncan Hines classic vanilla frosting, which is also gluten-free and dairy-free. As a special treat, my mom made these cupcakes for Alex this week, adding maraschino cherries on top as a bonus, and he was delighted.

Aside from Alex’s appetite for food, he also has a hunger for knowledge, and lately he has been including me in his quest for information. Even though Alex is a whiz at using search engines to find information online, he has been asking me to “check out” topics he finds interesting, including such varied topics as bathroom scales, the NFL draft, grass, blue moons, and digital clocks.  I think he enjoys doing this research with me as a shared activity. This also goes along with his recent daily request that Ed or I “visit in Alex’s room.” Instead of wanting to be alone, he likes hanging out with us. Moreover, he likes us to take care of him. Last night, he asked me to take his blood pressure. Although he and I both know his blood pressure is excellent, I think he liked the idea of having me act as his nurse. Similarly, he often asks Ed and me to “tuck you [me—he still reverses his pronouns] back in.” Alex is quite capable of pulling up his own covers in bed, but I think our doing this for him gives him a great sense of comfort, as it does a young child. When we make him feel physically secure by making certain he’s wrapped in his blankets, he seems to feel emotionally secure, as well. The night before last, he awakened me at 12:30 A.M. and 5:30 A.M. to tuck him back in bed. I really think he needed me to reassure him that everything was all right more than he actually needed me to replace the covers. Since he asked nicely, smiled sweetly when I tucked him in, and went right back to sleep, I didn’t mind the interruptions of my sleep. I wish that wrapping a blanket around him and kissing his forehead could solve all of Alex’s problems in life. I’m just thankful that simple actions can bring him comfort and that he knows Ed and I will do everything in our power to make him feel safe and secure.

“And since we know He hears us when we make our requests, we also know that He will give us what we ask for.” I John 5:15

Number, Please

Since he got his new graphing calculator last week, Alex has been carrying it with him around the house—from the family room to his bedroom to the kitchen to the bathroom. In addition, he has been filling notebooks with numbers he’s written. One morning, we discovered that he apparently had run out of paper in his bedroom, so he decided to write numbers on his bedroom wall. [A little household tip: thankfully, a cotton cosmetic square soaked with rubbing alcohol takes dry erase marker off painted walls.] Another evening, Ed noticed that Alex had written numbers on his legs and tummy. [Another tip: anti-bacterial soap, which contains alcohol, takes ballpoint ink off skin.] Not surprisingly, when I went to check his Internet searching history on his laptop the other day, he’s been researching numbers.

Here are a dozen number-related sites Alex has investigated online this week:

1. He Googled “big number random generator.”

2. He also checked out “math videos” on Google.

3. In addition, he typed, “count from 0 to 100 & beyond” into Google.

4. Similarly, he searched for “numbers 0-500” on Google.

5. Later, he expanded his Google search for “numbers tables 0-10,000.”

6. The last search I discovered on Google was “2091,” which may seem like a random big number. However, I’m sure he was thinking of it as a year because in 2091, he will turn 100 years old.

7. From Google, he went to You Tube, where he found a video called “Random Number Generator.”

8. You Tube also amused him with a musical video called “Numbers Song 1-1000.”

9. Another You Tube music video he watched was entitled, “The Big Numbers Song.”

10. His Google searches enabled him to find a site that had a prime numbers
table.

11. He also spent some time at homeschoolmath.net, where he looked at free rounding worksheets and free number charts.

12. Finally, combining his interest in math and foreign languages, he visited a
website that taught how to count from 0 to 100 in more than twenty different languages.

Since I never particularly liked math, I’ve never quite understood Alex’s love of everything about numbers. However, I’m pleased that he still possesses a curiosity about learning and has developed the skills needed to research topics he finds interesting, both of which ensure that he will continue to learn and develop his mind.

“And I will make a covenant of peace with them, an everlasting covenant. I will give them their land and increase their numbers, and I will put my Temple among them forever. “ Ezekiel 37:26

Autism Articles

As I have mentioned in previous blog entries, I do quite a bit of autism research, always looking for something that might help Alex. Three recent online articles caught my attention with their interesting titles, and yet I found they raised more questions than they answered. The first article, “The Hidden Potential of Autistic Kids,” published in Scientific American, [Click here.] focuses upon the problems of accurately testing children with autism. The author notes, “Researchers have long considered the majority of those affected by autism to be mentally retarded. Although the numbers cited vary, they generally fall between 70-80 percent of the affected population.” The article goes on to explain that traditional intelligence testing involves social knowledge and verbal skills, two common weaknesses in people with autism. For example, the evaluator may ask the child what to do if he/she found a sealed, stamped, addressed envelope on the sidewalk; this requires some social knowledge to realize that one should put it in a mailbox. A language-based test question might be something like, “What do a pencil and a paintbrush have in common?” Analogies such as these are often difficult for children with autism to understand and explain. The author of the article, who has two younger brothers with autism, gives an example of a question used to evaluate her brother in which he was asked what was an appropriate question to ask someone whom he found out was getting married. His “failed” response: “What kind of cake are you having?” [Actually, I think that’s a very good answer!] Considering the obstacles autism poses, the author suggests that nonverbal testing, such as those that measure pattern recognition and logic, be used more often to measure more accurately the potential and skills of a person with autism. I totally agree with her point and wonder why nonverbal testing is NOT used more often. Why are children with autism tested in ways that they are bound to be unsuccessful?

Another article I read this week entitled “’Sensitive Santa’ Meets Kids With Autism,” which appeared on the ABC News website, [Click here.] describes how some malls around the U.S. are offering special times for families who have children with autism to shop. Understanding the sensory issues many of these children face, the organizers accommodate the special needs by dimming lights, lowering the volume of background music, and providing an understanding Santa for the children to visit. In addition, they offer an informational pamphlet for the families so that they can prepare the children ahead of time as to what to expect. The organizer of “Sensitive Santa” at one mall commented, “We will continue to do it because obviously there’s a huge demand.” While the thoughtfulness behind this kind gesture of allowing families with autism to enjoy Christmas shopping is wonderful, I wonder why no one has questioned why so many children today have autism, making these special events with “huge demand” necessary. Certainly autism awareness and acceptance of these children is commendable, but researchers need to work harder on finding treatment and cures so that “Sensitive Santa” days at the mall are not needed. When I was listening to my car radio the other day, I heard a report about how successful “Sensitive Santa” days have been around the country this holiday season. A psychologist being interviewed about Christmas shopping with children who have autism recommended giving them sunglasses and earplugs to wear to help them deal with sensory overload. In addition, she advised parents of children with autism to “plan ahead.” While her ideas were helpful, I found myself laughing out loud at how obvious this suggestion is because anyone who has a child with autism knows that our lives are constantly about planning ahead yet expecting the unexpected. Most autism parents could train the military on covert operations because we can get our kids out of a crowded public place in record time, should they have meltdowns. We learn those survival tactics early through experience.

The third article on my reading list this week entitled “Living Life With Autism: Has Anything Really Changed?” appeared on the Forbes website. [Click here.] This feature discussed the issue of children with autism reaching adulthood and the concerns regarding their employability. The statistics quoted in the article should startle people with how overwhelming the number of adults with autism needing services is likely to be. Currently, an estimated 1 to 1.5 million adults with autism live in the U.S. today, and the articles states that, “in the next decade alone, 500,000 children with autism will come of age.” The estimated cost of taking care of one person with autism is $3.2 million dollars over a lifetime. Moreover, the unemployment rate for adults with autism, based on 2009 data, is approximately 66%, but other statistics show that a better estimate is 80-85% of adults with autism are unemployed. In this article, however, an optimistic outlook indicates more job opportunities for adults with autism, citing three examples of places where the employees with autism have been successful in making greeting cards or testing software or farming. Certainly, these ideas are encouraging, but I question how many of the increasing number of people with autism could even do these jobs. Nonetheless, a spokesperson for Autism Speaks who is quoted in this article, Peter Bell, encourages parents who have children with autism that many job opportunities will be available, advising, “…the sky’s the limit. Always be open-minded. Things are changing.” Despite his positive spin on the job situation, I think the answer to the article title’s question is probably no, considering the unemployment figures given and the limited job resources available. On the other hand, the increasing number of people with autism has changed, yet not enough is being done to help these people get better so that they can work. At a cost of more than $3 million dollars per person, action had better be taken quickly to remedy this situation that goes beyond better testing, “Sensitive Santas,” and platitudes about how people with autism can do anything. Awareness and accommodation are good, but a concerted effort to find answers about curing autism must be pursued.

“You said, ‘Listen and I will speak! I have some questions for you, and you must answer them.’” Job 42:4

Sugar-coating

This past week, two reports in the national news regarding autism caught my attention. An article in USA Today entitled “Adults with Autism Speak Out” notes, “Today, as more children with autism enter adulthood, some are rejecting the idea that autism is a disease to be cured.” Not surprisingly, those adults with autism who vocally oppose the concept of curing the disorder are usually at the high-functioning end of the spectrum and are often categorized as having Asperger’s Syndrome. Some feel that the desire to cure autism means a lack of acceptance of the child as he or she is. As Cathy Pratt, director of the Indiana Resource Center for Autism, states in this article, “If their autism is part of their character, part of how they identify themselves, to say to them that we have to cure you now is really saying that we don’t accept who they are now.” Asserting that autism is not only something to be accepted but also a condition to be celebrated is Dana Renay, president of the Autism Society of Indiana. Ms. Renay, who is also the parent of a child with autism, is quoted in the article as saying, “People with autism can do anything they want to do. They should be given the opportunity to be whomever they want to be, and part of the greatness of who they are is their autism.” [To read the entire article, click here.]

Echoing this concept that autism offers certain benefits, a Fox News report, “Autism Can Be an ‘Advantage,’” points out that “scientists need to stop viewing the traits of autism as flaws that need to be corrected,” as explained in a recent commentary in the journal Nature. According to University of Montreal psychiatry professor Dr. Laurent Mottron, “Recent data and my own personal experience suggest it’s time to start thinking of autism as an advantage in some spheres, not a cross to bear.” Dr. Mottron supports his position by noting that people with autism often display extraordinary memories and special skills in auditory and visual tasks. On the other hand, Dr. Mottron also points out the realities concerning the challenges autism poses, stating, “One out of ten autistics cannot speak, nine out of ten have no regular job, and four out of five autistic adults are still dependent on their parents.” [To read the entire report, click here.]

As I previously explained in my blog entry “Curebie,” I am a parent who actively seeks and prays for a cure for autism. Perhaps my recent experience with Alex’s anxiety attacks over the weekend has made me especially frustrated with those who sugar-coat the realities of autism. After watching our nearly twenty-year-old son become so agitated that he hurled his six-foot frame at Ed and me, hitting, kicking, and biting, I fail to see how autism is an advantage. As he yelled about his obsessions, enhanced by his phenomenal memory, ranting repeatedly about exact gas prices on specific dates several years ago and frantically blurting, “I’m sorry!” and “Happy New Year!” over and over to make certain we knew how angry he was, we have trouble seeing these autistic behaviors as anything but flaws, “crosses to bear” for all three of us. Sadly, we’re not the only parents dealing with these upsetting behaviors that need to be eradicated instead of celebrated. Certainly, we love Alex unconditionally and know that he can’t help the way he behaves, but we hate what autism does to him. Just as my parents refused to allow me to walk around terribly nearsighted and made certain that I had glasses or contact lenses to help me deal with the limitations of my eyesight, Ed and I have worked to help Alex overcome the obstacles autism has presented in his life. While I always try to maintain a positive attitude, I refuse to look at autism through rose-colored glasses, and by sharing our experiences honestly, I hope that others are not blinded by those who present autism as something wonderful. Of course, those with autism deserve understanding and acceptance, but what they deserve most is to be able to live life to the fullest, happy and free of the limitations of autism—able to express themselves, hold down jobs, and live independently. Don’t all parents want that for their children?

“For they do not speak peace, but they devise deceitful matters against quiet ones in the land.” Psalm 35:20

Grasping at Straws

For more than fifteen years, ever since Alex was diagnosed with autism, I have spent countless hours researching autism, hoping to find something that will help him. One of the benefits of having been an English major in college is that I developed research skills through a great deal of practice. Moreover, from all the reading I was assigned as a student, I learned to read rapidly and assimilate information. This has been immensely helpful as I’ve done autism research, especially since I don’t have a lot of time for research because of taking care of Alex. Some of the information I’ve found has been useful, and we’ve implemented interventions with Alex after careful consideration and often after running the details past his doctor. The Internet has been a godsend for us because we can easily follow the latest studies on autism. Certainly the most valuable aspect of the Internet has been our ability to connect with other parents of children with autism so that we can share ideas; other parents have frequently been our most valuable resource in knowing what strategies to try with Alex. In addition, I follow medical research in autism, constantly seeking something that could ultimately cure Alex.

Last month, two research studies regarding autism were reported in the national news that I found curious. One of these studies analyzed the facial features of children with autism. [A link to this research can be accessed by clicking here.] According to this research, children with autism have wider eyes, a broader upper face, a shorter middle region of the face (including the nose and cheeks), and a wider mouth and philtrum (the divot between the nose and upper lip). After reading about these findings, I, of course, began studying pictures of Alex to see if he also fit these characteristics. As I scrutinized Alex’s photos, I observed that his eyes are set like Ed’s, and his mouth is identical to mine. If, indeed, both features are wide, he’s inherited them from us. As for his philtrum, I’m guessing it’s like mine; I’ve never actually seen Ed’s philtrum because he’s had a moustache as long as I’ve known him. Maybe Alex’s facial features are not obviously “autistic” because he’s on the high functioning end of the spectrum. The study indicated that the more severe the autism in terms of behavior and language difficulties, the more distinct the facial features in children. While I found this research somewhat intriguing, I soon found myself asking, “What’s the point?” Apparently, the thought behind the research is that knowing when the changes occur in the facial features could help in finding an underlying cause of autism. The author of the study, Dr. Kristina Aldridge, assistant professor of anatomy at the University of Missouri School of Medicine, explains, “Knowing that point in time could lead us to identify a genetic cause, a window of time when the embryo may be susceptible to an environmental factor, or both.” I tend to be skeptical about the value of this research, especially considering the number of children who were typical at birth but then regressed into autism. Moreover, I think that this type of research will not quickly lead to medical interventions that can actually help children who currently have autism, wide eyes and mouth or not.

Another finding regarding anatomical differences in children with autism was reported last week; this one dealt with structural anomalies in lungs. [A link to this article can be accessed by clicking here.] Pediatric pulmonologist Dr. Barbara Stewart of Nemours Children’s Clinic in Pensacola, Florida, documented that she noticed differences in children with autism when she examined their airways with a bronchoscope. In normal lungs, airways branch off the bronchial tubes in random, asymmetrical patterns. However, she discovered that in children with autism, their airways were symmetrical and doubled up into two smaller branches, which she calls “symmetrical doublets.” Despite these unusual structures, the children with autism had normal lung function. Although her findings have not yet been published in a peer-reviewed journal, she believes that these abnormal airways may be the “first anatomical marker” for autism. While these findings are interesting, I wonder how many parents would agree to allow their children to be examined with a bronchoscope. Moreover, I again question the wisdom of spending time and money researching anatomical structures instead of addressing known issues in autism: impaired language and social skills. Rather than grasping at straws by scrutinizing facial widths and airway branches, doctors need to be looking for ways to address anxiety, digestive issues, and impaired detoxification systems common in children with autism. Of course, I’m not a doctor; I’m an English teacher who happens to have a child with autism. However, with autism incidence increasing at rapid rates and a generation of children with autism who will soon be adults, research to address pressing issues must be done. Our children with autism deserve at least that much.

“But ask those who have been around, and they will tell you the truth.” Job 21:29

Alex's Research

As teachers and home schooling parents, Ed and I believe that one of the most valuable lessons we could teach Alex is that if you don’t know something, search for the answer. To that end, we’ve provided him over the years a wealth of reference books, including dictionaries, various almanacs, and textbooks. In addition, we’ve allowed him to have supervised access to the Internet, and he is a whiz at using search engines to locate information about topics of interest. When he was younger, he preferred the search engine Ask Jeeves (which later became Ask.com), but now he is a devotee of Google, probably because, through his extensive mathematical research, he actually knows what a googol is. When he was younger and would ask us questions we didn’t know, he would tell us emphatically, “Check it out!” or “Look it up!” Now that he’s mastered surfing the Internet by himself, he no longer has to rely upon us for information because he can check it out and look it up himself.

Lately, Alex has been more independent, spending time reading and researching on his own. In fact, he seems to resent intrusions on his solitude. If I walk into the room when he’s reading a book or working on his computer, he will ask me, “When are you leaving?” Sometimes he’s even more blunt and will simply suggest, “Mommy is leaving.” Although truthfully this hurts my feelings a little bit, I’m glad that he’s able to entertain himself while making good use of his time by learning. Nonetheless, the nosy mom in me has wondered what he’s researching, and, of course, he’s unlikely to share what he’s thinking. Thankfully, his computer offers wonderful insights into his thought processes, so yesterday I decided to see what secrets his laptop would reveal. Mind you, I don’t feel a bit guilty about spying on him this way because I think parents should check out what their teenagers are doing online to ensure their safety. A quick glance at Alex’s computer desktop revealed an interesting array of documents and applications he has downloaded. With his love of math, I’m never surprised to discover he’s been doing mathematical research. On his desktop currently is a calculator application that can determine the difference between two dates, and he has a document about how to calculate the day of the week for a given date. In addition, his love of pi continues, as evidenced by two documents on the desktop listing 10,000 digits of pi. Although he has memorized nearly 2,000 digits of pi, I suspect he may be working on learning even more of them. He also has a document about Jeopardy rules, which didn’t surprise me, considering what a big fan of this game show he is. Other items on his desktop require a bit more interpretation on my part as to his interests in them. For example, he has information about the Conservative magazine The Weekly Standard, and I’m guessing that he has heard about this periodical from seeing it advertised on Fox News, which he and Ed watch religiously. He has also downloaded a preschool enrollment form, which I think he liked because it requested information he finds vital: name, address, phone number, and ages of children. Other downloads reveal his fascination with calendars and dates. To illustrate, he has a document from the Kentucky Department of Education giving guidelines about how to set up a school year calendar. Another document I found gave me pause for thought: “Conference of Presidents Special Symposium to Bring Ahmadinejad to Justice for Incitement to Genocide.” While Alex follows the news, I couldn’t figure out what the appeal of this report held for him until I saw the date at the top of the page—December 16, 2006, his 15th birthday. Another dated download required some detective work on my part. He had a video entitled October 1970, and I wondered why he would find that date long before he was ever born interesting. A little calculation and speculation brings me to the conclusion that Ed, whose birthday is in October, turned 19 in 1970—the same age Alex is now.

After looking over his desktop downloads, I proceeded to his Internet browsing history to see what else he’s been researching lately. The most recent sites he’s visited reveal some varied interests. Continuing his affection for calendars, he found a site that has a 10,000 year calendar. He has also visited a free game site called Gas n’ Go, a simulation game where the player runs a gas station. Since Alex loves simulation games, such as Restaurant Empire and Monopoly Tycoon, I’m sure this game is right up his alley. Also, he studies trends in gas and oil prices; from following the stock market, he actually understands what influences the rise and fall of these prices. With his interest in the stock market and investments, his recent visit to the Harris Bank website makes sense to me. In fact, the only baffling link I found was his visit to the Growing Up Forum, where a mother had posted concerns about how her nine-year-old would cope with a the new baby in the family. I’m guessing that Alex’s only curiosity here was the mention of the age of the older child and perhaps relief that as an only child, he never had to cope with a new baby in our house. From there, I investigated Alex’s most-visited websites, all of which reflect his favorite topics and interests: Google, Google Images, You Tube, 314 Digits of Pi, Factorial Number Generator, Alexander and Baldwin Price (his favorite stock to follow because its abbreviation is ALEX), and J! Archive (a fan-generated archive of Jeopardy games and players). In surveying Alex’s history on the computer, I’m pleased that he has such a natural curiosity as well as access to the Internet to satisfy his desire to learn and gain knowledge about topics he finds engaging.

“For wisdom will enter your heart, and knowledge will fill you with joy.” Proverbs 2:10