Treating Autism

One of the greatest resources in dealing with autism is the ability to communicate with other parents through the Internet. When Alex was first diagnosed with autism, the presence of autism support groups was somewhat limited, but using my dial-up modem and belonging to a few Listserv groups allowed me to gain a wealth of knowledge from other parents who were in similar situations to ours. Thanks to Facebook, parents today have many autism groups from which to choose, giving us the opportunity to share ideas, empathize, and gain insight into ways to help our children.

Perhaps because we have been dealing with autism for more than twenty years, the attitudes of some parents on these online groups puzzles me. In fact, they remind me of some of my former middle school students. While many are earnestly and eagerly seeking information, others ask questions that have repeatedly been answered, and still others who don’t like the provided answers argue with those who have told them the truth. For some whose children have recently been diagnosed with autism, they want solutions that are inexpensive, easy, and quick. Of course, parents don’t want their children to suffer more than necessary, and we seek the best ways to help our children. However, autism treatment requires money, dedication, patience, and time.

Over the years, we have tried a variety of therapies and interventions to help Alex: speech, occupational, sensory integration, cranial, chelation, behavioral, music, and vision therapies, along with the gluten-free/casein-free diet, nutritional supplements, vitamin methyl B-12 injections, and medications. Some methods worked better than others, but all of them have contributed to helping Alex make progress. When Alex was younger, insurance typically did not cover expenses for autism therapies, and we paid for these therapies ourselves. We were blessed to be able to afford these expenses somehow, even on our teachers’ salaries. Thankfully, more therapies are covered for families by insurance and state funding, as Alex’s current therapies are, so that families don’t have as much financial burden as they did in the past. Nonetheless, I don’t regret a single penny that we spent on Alex’s treatments because I know they helped make him healthier and improved his skills.

Along with the expenditure of money, parents must also realize that helping a child with autism requires a great deal of effort. Certainly, putting a child on a restricted diet can seem overwhelming at first, but the benefits of improved behavior and healing digestive issues reward those efforts. However, parents need to be fully committed to making changes before attempting interventions. When we decided to put Alex on the diet free of glutens and milk products, we committed to removing these foods completely from his diet for at least three months. After seeing improvements during that trial period and grateful for Alex’s cooperation with the diet, we have kept him on this diet for nearly twenty years.

In addition, therapeutic interventions, such as speech and behavioral therapy, often require a great deal of practice and take months and even years before significant progress is made. Rarely do sudden changes occur in response to interventions. For us, the quickest changes we saw were in response to the supplement melatonin that immediately helped Alex sleep better instead of wandering around in the night and vision therapy that significantly improved Alex’s balance within a few weeks. Another intervention that had sudden impact was the introduction of vitamin methyl B-12 injections. Within a week of starting the B-12 shots, Alex was finally able to use the toilet independently after ten years of potty training. Apparently, the methyl B-12 injections caused nerve healing that allowed him to feel the urge to use the toilet. In this situation, a seemingly quick fix solved a problem we had been dealing with for many years. However, most of the improvements we have seen were more gradual, requiring dedication and patience, even when we could not see much progress being made.

For those of us whose children are now adults with autism, we have gained years of experience that we are happy to share with others. We have learned that treating autism is not a sprint race, but instead, a marathon where we must pace ourselves along the way. Perhaps one of the best pieces of advice I learned came from Alex’s childhood doctor, who always reminded me to begin only one new intervention at a time so that we could assess the response to therapy accurately. In addition, she advised us to give new things a fair trial because healing is not usually instantaneous; progress takes time.

Most of all, the lesson I have learned along the way is to trust God, especially in the difficult times and when progress seems slower than I’d like. Despite our fervent prayers for Alex, God has His own plans for healing. Through our experiences, we have developed our faith as we’ve waited and been encouraged by the progress we have witnessed. While Alex has not fully recovered from all of the issues autism has caused, his support team of therapists calls him “a success story,” and we realize that all the costs, efforts, and time have been worthwhile. Moreover, we are thankful that Alex is happier and healthier, and we continue to place our hope in God, knowing that He will always be faithful to us, just as He has always taken care of our needs in the past.

“…And let us run with endurance the race God has set before us. We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith…” Hebrews 12:1-2

Buyer Beware

 

Recently several “suggested posts” have been showing up in my Facebook news feed regarding new treatments for autism. Intrigued by their enthusiastic sales pitches, I have been checking out these “sponsored” advertisements and found them to be full of empty promises and false hope. After more than twenty years of doing autism research, I can recognize unscrupulous charlatans who prey upon the hopes of autism parents willing to do anything to help their beloved children. However, I wonder how many parents buy into these methods, supplements, and treatments in earnest efforts to make their children better, wasting their time and money and even potentially endangering their children’s health.

In evaluating the claims of these advertisements for autism miracle cures, parents should watch for the following red flags warning them to steer clear of these promoters. First, these new methods usually have some secrecy surrounding them. Magical supplements have “proprietary blends” of ingredients that could be worthless or even harmful. In addition, parents should be wary of vague claims. If, indeed, this treatment works, the advertiser should proudly tell what it does. Some of these ads attempt to boost the value by using jargon and vague statements. Perhaps they use loaded language because those claiming expertise in the field really have none. Finally, the obvious clue that should make parents skeptical is that these treatments are ridiculously expensive. In fact, some of them are shamefully expensive, to the point they hide the cost of the treatment until after they have made all of their sales pitches. Certainly, parents are willing to spend any amount of money to make their children with autism better, but these charlatans prey upon desperate parents in order to make money. To me, that is criminal.

Because of quackery that exists in the treatment of autism, some people are quick to dismiss any kinds of alternative therapies that may benefit some children with autism. For example, I have read articles in the mainstream media that describe “what doesn’t work” and include among the so-called worthless interventions special diets and chelation. (These same types of articles also firmly state that there is absolutely no connection between autism and vaccinations. I disagree.) Not only are special diets and chelation deemed unhelpful in these articles, but these treatment methods are also described as “dangerous” to children with autism.

Of course, parents need to do research and consult with reputable medical professionals before trying alternative therapies. We were fortunate to have a medical doctor with extensive knowledge of nutrition who took a holistic approach to treating Alex. In addition, we did reliable testing before jumping into uncharted waters, and we only tried one new thing at a time so that we could discern the positive and negative effects of the therapy. When Alex was seven years old, we had him tested for food allergies, and after discovering that he, like many children with autism, had sensitivities to caseins found in milk products and glutens found in grains, we placed him on a gluten-free and casein-free diet, which he still maintains today. I believe that his cooperative adherence to this special diet has prevented him from having digestive issues that many people with autism suffer.

When Alex was nine years old, we had him take a heavy metals challenge test, which only required urine samples, and the results showed he had toxic metals in his system, something fairly common in children with autism. We knew that keeping arsenic, lead, mercury, and aluminum in his body was not healthy, and under the direction of his doctor, who had expertise in chelation therapy, we treated him for three years with a safe protocol to rid his body of these toxins. Alex’s doctor prescribed DMSA pills containing sulfur to bind with the toxic metals that removed them from his system. While special diets and chelation are not appropriate for all children with autism, we believe that testing indicated these methods were necessary for Alex to improve his health.

While the GFCF diet and chelation therapy worked for Alex, some other methods we have tried have not been as successful. For example, some children with autism benefit from taking fish oil Omega 3 supplements. When we have tried these supplements with Alex, he has had negative side effects, such as agitation, hyperactivity, and insomnia. Consequently, we felt these supplements did not work for him. In addition, we tried giving him vitamin A in the form of cod liver oil capsules along with the prescription medication urecholine after hearing that this therapy had been successful with other children. However, Alex did not show any improvement with this method, and we discontinued this treatment since he did not respond favorably, as other children did. Because children with autism have varied nutritional needs, some respond to certain therapies, while others do not. As Alex’s doctor frequently reminded us, so long as a treatment is not harmful, it is always worth trying.

When considering therapy methods, parents should also investigate less expensive and more convenient yet equally effective alternatives. For example, I researched Fast Forward, a computer-based therapy designed to improve children’s receptive language skills, which were a weakness for Alex. However, at the time, no local providers of this therapy existed, which meant traveling in addition to the great expense of the therapy itself. After more research, I found Earobics, a similar program that parents could purchase for home use at a very reasonable price. Believing that Alex could benefit from this lesser expensive program we could use at home, we tried Earobics and found this games-based computer program did indeed improve his receptive language skills.

Similarly, after reading about auditory integration therapy (AIT) and how it addressed hypersensitive hearing and sensory processing issues that Alex had, I was unable to find any therapists nearby who offered this method. In addition, for many parents AIT is cost-prohibitive. More research led me to the EASe disc, a CD parents can purchase for home use offering many of the benefits of AIT along with the convenience of doing the therapy in the comforts of home. For Alex, the EASe disc enabled him to overcome sound sensitivities that upset him, and now he is rarely bothered by loud noise. Unlike some people with autism who must wear earplugs or noise-cancelling headphones in public places to deal with overwhelming sounds, Alex can go to sporting events and concerts without earplugs or headphones, thankfully unfazed by the noise.

Although we found benefits to some alternative therapies, others did not work for Alex, and the successful therapies we found may not work for others. Parents need to do their research to find ways to help their children without putting them in danger and without spending ridiculous amounts of money on unproven methods. After reading through yet another Facebook ad claiming, “Our autism therapy works. Period,” I found the comments people made in response to this bold statement interesting, questioning the validity of the treatment. As one person wisely noted, “If there is ever a truly effective treatment for autism, it will hopefully be shouted from the rooftops and have folks lining up for it. I don’t think you would have to stumble on it via Facebook.” I totally agree. In the meantime, parents like me keep searching for ways to make our children with autism healthier, happier, and more independent. When I find something that works, I will be shouting it from the rooftops (or at least sharing it from my blog), hoping to help all of our children with autism be their best.

“And many false prophets will appear and will deceive many people.” Matthew 24:11

Autism and Backgammon

Over Christmas break, I started playing backgammon on the computer after several years of having not played the game. When Ed and I were dating, we used to play the board game, and as I recall, he won most of the time. At that time, my lack of experience at playing, along with my timidity in making daring moves that would put me ahead but could also risk my being sent back, made me an easy target for defeat. Playing on the computer offers me an ever-ready opponent and one whom I can insult without feeling any guilt. I often find myself sarcastically telling my computer opponent, “Oh, yeah, YOU rolled doubles!” or “Sure, send me back, you JERK!” I suspect that while I enjoy the mental stimulation of the game, I appreciate even more the stress relief of being able to insult someone whose feelings I cannot hurt.

In a past blog entry, I wrote about how Ed had commented that our life with autism is like playing the board game Chutes and Ladders. [To read this entry, click here.] His analogy was that at times when Alex is making progress, we climb the ladders to get to the rewards. Other times, we find ourselves tripped up by issues, such as anxiety, and find that we are falling down the chutes instead, going backwards. While I think this comparison is good and valid, my recent online games of backgammon have made me realize that life with autism is more like a game of backgammon. While progress in Chutes and Ladders, a simple game designed for children, relies upon pure luck in the roll of the dice, backgammon depends upon not only the luck of the dice but also the strategy of the players. In addition, Chutes and Ladders players don’t think much about their opponents’ moves, other than to beat them to the final blue ribbon square. By contrast, backgammon players try to anticipate their opponents’ moves that may not only beat them at the end but also hinder their progress along the way. While backgammon players learn certain basic strategies for protecting their game pieces and making progress, each move usually requires some thought about how to proceed safely and wisely to reach the desired end—winning the game.

In dealing with Alex’s autism, we started by playing the safe game, doing the traditional moves of speech therapy, special education, and occupational therapy. Later, we decided that bolder moves were needed to help him make more progress, such as homeschooling, sensory integration therapy, visual therapy, cranial therapy, and biomedical interventions, including putting him on the diet free of glutens and caseins, giving him nutritional supplements, and using chelation to rid his body of toxic metals. Some of these less traditional approaches were the equivalent of rolling doubles in backgammon as they helped us move Alex’s progress along much more rapidly. At other times, opponents, such as anxiety, blocked us, as opponents in backgammon strategically do, to keep us from moving along as fast as we’d like. Even more frustrating have been the times when we were taken off the board completely, put on the bar to wait our next move to get back in the game, such as when we’ve given him supplements that made him worse, including fish oil that makes him hyper and gives him insomnia. From these experiences, Ed and I have learned to think carefully before we make any new moves, researching the methods and discussing the consequences so that we don’t find ourselves being blocked from moving forward, or even worse, being sent back to the beginning. Perhaps the most valuable lesson that backgammon has reminded me in dealing with autism is the importance of always sticking together. A single backgammon game piece is always vulnerable, in danger of being sent back by the opponent; only those who are not alone remain safe. Despite the fears and frustrations the obstacles of autism bring, Ed and I have learned that we’re always strongest when we work together to help Alex. As we try to defeat the difficult aspects of autism, we keep working to get all of our game pieces onto our home board and then take them completely off the board, hoping for and striving toward victory and Alex’s total defeat of our opponent, autism.

“To what can I compare this generation? It is like children playing a game in the public square.” Matthew 11:16

Special Symbols

As I put the ornaments on our Christmas tree over the weekend, I realized what an eclectic collection we have acquired during the twenty-three years of our marriage. Nearly all of our ornaments are gifts we have received from each other, family, or friends, and I have received a number of them as Christmas gifts from my students over the years. In addition, we have some remnants from my childhood Christmas trees—ornaments that have sentimental value, most of which came from the dime store. Our Christmas tree reflects our interests through the ornaments depicting various sports, our favorite NASCAR drivers and their cars, apples as a nod to our chosen profession of teaching, as well as several Scarlett O'Hara figurines from my favorite book, Gone With the Wind. The most precious ornaments, however, are the Hallmark Keepsakes that have pictures of Alex at various ages: decked out for preschool at 4, wearing a cowboy hat at 5, and raking leaves at 8, to name a few. Keeping watch over our tree is a brunette angel tree topper who wears her hair like I wear mine, so she seems like a kindred spirit. While other trees may be more beautiful than ours, I love that our Christmas tree represents our life and reminds us of the people who care about us.

After finishing decorating our tree, I began to think about what kinds of ornaments would best represent stages of Alex’s life and the people other than family and friends who have helped him. If I were putting together a special symbol tree for Alex, his ornaments would reflect the various therapies that have made him better.

To represent his beloved doctor, who supervised his special diet, nutritional supplements, chelation therapy, and cranial therapy, I would choose an apple to represent the good health she helped him maintain for more than ten years while he was under her care.


As a symbol of the developmental optometrist who helped Alex with using his eyes together better, improving his balance so that he could go up and down stairs easily and stop tipping his head to look at things, I would select a pair of glasses as a reminder of those Alex wore briefly while he did visual therapy.


An ABC ornament would serve as a reminder of his speech therapist, who worked with him to take all the written words he had learned from reading at an early age and put them into spoken language so that he could be understood instead of being frustrated because he couldn’t talk.


For her loving patience and creativity in helping Alex to use his hands more adeptly in fine motor tasks, a hand with a heart would represent Alex’s occupational therapist, who often convinced him to do tasks he didn’t like by promising to teach him French words, something he did enjoy.


A musical note would symbolize his music therapist, who not only somehow taught seemingly rhythm-impaired Alex how to clap on beat but also engaged him with country music and jazz that he knew Alex loved, improving his social skills and confidence along the way.


Most importantly, Alex’s Christmas tree would be a testimony to the healing God has given him, represented by the ornaments Faith, Hope, and Love. Although autism has presented obstacles, these spiritual gifts have blessed our lives and enabled us to find peace despite upset, joy despite frustration, and strength despite fear. Through the people God has brought across our path, Alex has made progress, giving us hope that he will continue to improve so that we can continue to celebrate just how far he’s come.

“And it will be like a sign on your hand and a symbol on your forehead that the Lord brought us out of Egypt with His mighty hand.” Exodus 13:16