Sunday, June 17, 2018

Fatherhood and Faith

“Alex watches for a moment, then turns away, unimpressed by the bird’s apparent weightlessness, as though his three-year-old innocence assures that nothing is inconceivable. Suddenly, I’m stunned by my son’s lack of surprise at anything nature offers, and I realize how much wiser than I he may be…”~“Spring Walk Along the Lake” from Tidal Air by Edward Byrne

Like many people with autism, Alex isn’t keen on affectionate gestures. If asked for a hug, he will lean forward awkwardly and accept an embrace, usually while keeping his own arms at his sides. While he doesn’t give kisses, he will lean his cheek or forehead forward to accept an offered kiss. Hugs and kisses probably cause sensory overload for him, and he doesn’t seem to need physical affection to reassure him that he is loved.

Because he hardly ever initiates physical contact, those times that he does are rare and precious. The other night I had the privilege of watching one of those sweet moments. As we were going upstairs at Ed’s office building, I was walking behind the two of them and saw Alex reach for Ed’s hand. I suspect that he felt a bit unsure climbing those steep steps and needed the steady hand of his dad, trusting that he would guide him. Even though Alex is a twenty-six-year-old young man who stands as tall as his father, when he reaches for Ed’s hand, he reminds me of the little boy who grew up knowing that his dad would always be there for him.

One of the qualities that Alex appreciates most about his dad is that he finds Ed amusing. Every morning, Ed helps Alex brush his teeth and makes a tedious task a fun-filled two minutes. As the sonic toothbrush whirrs in Alex’s mouth, Ed runs an animated monologue about how brushing teeth is like a game show, which keeps Alex entertained and eager to brush his teeth every morning. Unfortunately, for the bedtime tooth-brushing episode, I lack the energy and enthusiasm Ed demonstrates in the morning and simply count down the time left as the electric toothbrush beeps every thirty seconds. Fortunately, Alex doesn’t seem to hold this against me, but I’m sure he prefers brushing his teeth with Ed.

What Alex finds even more entertaining is when Ed loses his cool. Although Ed is usually very easy going and patient, especially with Alex, when he gets annoyed or frustrated, Alex thinks his dad is really funny. I think Alex secretly hopes that a train will be on the railroad tracks to be in our way when we are going places because his dad’s sighing over this inconvenience makes Alex laugh. However, Alex thinks it’s even funnier when his dad gets so frustrated that he curses aloud. While we are fortunate that Alex has not picked up some of the more colorful language we use occasionally, he is eager to report to me specifically which “bad words” Ed has uttered when he was annoyed. Not only does Alex find Ed’s irritation amusing, but he is also gleeful about tattling on him to me.

Over the years, Alex has developed common interests that he enjoys sharing with Ed: music, sports, the stock market, and weather. Every afternoon, Alex asks him why the stock market was up or down that day, and Ed provides the details he needs to understand the current economic status. On days when the stock market has not done well, Ed has taught Alex not to fret, reminding him, “Sometimes it goes up; sometimes it goes down, just like temperatures.”

Every night at 9:00, Alex wants to "do weather with Daddy," asking Ed for the high and low and record temperatures of the day, even though he is quite capable of looking up this data himself. Nonetheless, this is a shared activity Alex looks forward to doing with his dad every evening. On the rare evenings when Ed is not home because of work obligations, Alex will check the high and low temperatures with me, but I can tell he’s not nearly as enthusiastic about doing weather statistics with me as he is with his dad. Similarly, even if Alex has been watching a baseball game with me, he will tell me that he’ll ask his dad the final score of the game the next day if he goes to bed before the game ends. Perhaps he just doesn’t trust my skills with numbers. On the other hand, he may be seeking his dad’s pragmatic attitude if his team loses; Ed reminds Alex, just as he does with the stock market: “Sometimes you win; sometimes you lose.” With his calm reassurance, Ed has taught Alex to deal with downtrends and losses as part of life, and if all else fails, sigh and say something Alex will find amusing.

Throughout his life, Alex has learned that he can always depend on Ed, which is one of the greatest gifts a father can give his child. Because Alex has developed trust in his earthly father, he has developed strong faith in his heavenly father. Knowing that his dad will meet his needs, whether it be providing a helping hand, entertainment, information, or reassurance, Alex believes that God will similarly always take care of him. Since Ed has been a trustworthy father, Alex implicitly trusts in God, knowing that nothing is impossible with God. On this Father’s Day, I am truly grateful that Alex has been blessed with a father who loves him unconditionally, makes his life the best that it can be, and has raised him to be filled with faith, making us proud of the young man he has become.

“The father of a righteous child has great joy; a man who fathers a wise son rejoices in him.” Proverbs 3:11-12

Sunday, June 10, 2018


“Little darling, it’s been a long cold lonely winter. Little darling, it feels like years since it’s been here. Here comes the sun. Here comes the sun, and I say it’s all right.”––“Here Comes the Sun” by George Harrison

After long cold winters in Northwest Indiana, I eagerly anticipate the arrival of spring. This year, winter seemed to last even longer than usual; with temperatures running about ten degrees below average, we had one of the coldest Aprils in history. (Thanks to my amateur meteorologist husband and son for sharing that statistic with me!) Because it was colder than usual, the trees remained bare, and flowers were slow to bloom, making the arrival of spring appear about a month late.

For me, the main sign of spring is the blooming of the magnolia tree in our back yard. Day after day, I looked out my back window to see if the tightly closed buds had opened, but the cold weather delayed the debut of the blossoms. Perhaps this year the tree would not flower, and I would miss my favorite sign of spring. Finally, about a month after the magnolia tree typically blooms, the beautiful magenta flowers all suddenly opened once the time was right, assuring me that sometimes we have to wait, but the positive outcome rewards the waiting.

Early into the long cold winter, Alex suddenly developed an aversion to going places, something he had thoroughly enjoyed. With any changes in his behavior, we analyze the potential causes, ask him for insights, and hope that he’ll soon get over whatever is bothering him. Because he had developed some increased sensory sensitivity, we assumed that he was bothered by the cold and wind, which seemed reasonable. However, becoming a hermit was not reasonable. Although we were able to convince him to go to regular medical appointments, he had so much anxiety about going outside that he had no interest in going anyplace until the weather improved. Despite our encouragement, he wanted to stay home where it was warm.

Like the magnolia tree, I kept looking for signs that Alex might be ready to change but knew that until the weather improved, change was not likely. In the meantime, I decided that this would be a good time for another medication reduction that his psychiatric nurse practitioner had suggested. Since nothing else was changing, including Alex’s aversion to going places, we might as well see how he reacted to decreasing a sedative. In the past year we have been able to reduce or eliminate five of the medications he takes for anxiety. With each medication change, we have gradually tapered the dosage, prayed for positive results with no setbacks, and, thankfully, he has responded quite well.

When the magnolia flowers blossomed, I knew the time was right to make the change with Alex’s medication. Watching him carefully, I saw no signs of regression, which is always encouraging. Reducing his nighttime dose neither impacted his sleep negatively nor made him awaken in a foul mood. Along with seeing a lack of negative behaviors, we were seeing positive changes. In the past month, Alex has become more alert and energetic, “happy hopping” skipping through the house, and he readily engages in conversation, asking appropriate questions. Moreover, he is speaking in longer, more complete, and grammatically correct sentences. Whether these changes are related to the medication reduction or simply signs of progress, we are delighted with the awakening in Alex.

After seeing the improvements in his speech and alertness, we decided that now was the time to overcome the winter hibernation Alex had imposed upon himself. We were determined to get him out of the house last week. Enticed by the opening of a new superstore in our town, Alex was eager to see just how big this new store is. With the bribe of new composition notebooks for his willingness to go shopping, he was on board for the trip. A perfect summer day––sunny, calm, and seventy-five degrees––meant that Alex had no excuses for not going outside. As Ed and I chatted to Alex about topics he likes, such as gas prices and the weather, we hoped to distract him from any fears about leaving the house. With all the stars aligned, Alex made it all the way to the store without telling us he needed to go home, shopped happily, and left with not only his beloved red notebooks but also a map of the store he could study. We knew the outing was successful when he told us that he’d like to go back and check out the grocery part of the store, and that he liked the store “one hundred percent,” the highest praise he offers.

The next day, he informed me that he wanted to go to Burger King with his behavioral therapist and me. As part of his therapy, she and I take him places in the community as recreational therapy to practice social skills she has taught him. However, her busy schedule and his reluctance to go places has prevented these outings. Like me, she was delighted that he wanted to go out, and we returned to one of his favorite places after months of not going there. When we arrived, two kind ladies who work there and take a special interest in him enthusiastically greeted Alex by name and told him how much they had missed seeing him. If he had any qualms about going there, their warmth made him feel welcome and reassured. After chatting happily with his therapist and me over an orange-vanilla ginger ale, Alex told us that he’d like to go back to Burger King again soon.

With two successful outings behind us, we hoped we were on a roll. Another evening, we took Alex to his dad’s office to check the mail and watched him walk confidently down the hallways, even though he hadn’t been there in months. Once again, he proclaimed that he liked going there “one hundred percent,” making us hopeful that his anxiety about going places may be gone. Yesterday, I asked Alex if he wanted to go to Culver’s, one of his favorite fast food restaurants, and he eagerly said that he did. He did have one stipulation, however. He wanted to go to the one in Chesterton because “it’s further away” than the one here in town. Clearly, he seems to be over his fear of being too far from home. Even though he had eaten an early dinner, he was willing to sit with Ed and me as we ate, contentedly sipping a root beer (that is “special because they make their own,” as he reminded us). Despite all the people and noise, Alex showed no signs of anxiety, concluding that he had enjoyed that trip “one hundred percent” also and wanted to come back again.

After a good week with Alex not only willing to go places after months of staying home but also with his showing signs of thoroughly enjoying himself during these outings, we are encouraged that he has gotten past his fears of leaving the house, which is an answer to prayers. Even though we had become tired of waiting for change, frustrated when we saw no signs of progress, and even concerned that what we first thought was temporary might be permanent, God caused Alex to bloom at the right time. Once again, we have been reminded that God is always faithful and will fulfill His plans in His good time. As we look forward with anticipation to a summer of family outings, we are thankful that God continues to heal Alex so that he can enjoy all the good things in life.

“The wilderness and the dry land shall be glad; the desert shall rejoice and blossom like the crocus; it shall blossom abundantly and rejoice with joy and singing.” Isaiah 35:1-2

Sunday, June 3, 2018

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

Sunday, May 27, 2018

Retraining and Regaining the Appetite

About a year ago, Alex suddenly became a picky eater. Typically, children with autism do not eat a variety of foods, but Alex had always been good about trying new foods and eating well. In fact, the only food he refused to eat was popcorn. We knew we were blessed that he had such a healthy appetite and were thankful this was one problem of autism that was not a concern for us. Knowing that Alex goes through phases, we truly believed that within a few days or weeks, he’d soon tire of eating the same few foods and go back to his more expanded diet and healthy appetite. We were wrong.

According to the online article, “Mealtime and Children on the Autism Spectrum: Beyond Picky, Fussy, and Fads,” by Marci Wheeler on the Indiana Resource Center for Autism website, children with autism often have medical, behavioral, and/or environmental issues that cause them to have problems eating. [To read this excellent article, please click here.] She notes that medical concerns must be addressed first, and resolving those health issues is crucial to getting the child to eat properly. Specifically, she explains that some children with autism may gag or choke while eating, and others have food allergies or gastrointestinal disorders that affect their eating habits. In addition, some children with autism cannot feel or detect hunger, causing them to have no interest in eating. For that reason, allowing children with autism to wait until they feel hungry enough to eat, which is sometimes suggested for picky eaters, is a method that should not be used since they might never feel hunger pangs. Therefore, children with autism need medical evaluations to see what health conditions may be behind their poor appetites.

For Alex, we know what triggered the sudden change in his appetite. A mild virus that was going around last spring seemed to take away people’s desire to eat for about a week. Once that week was over, however, Alex still had little interest in eating. We soon discovered that he had also developed thrush, an overgrowth of yeast in the mouth and throat, probably because the virus had weakened his immune system. Yeast overgrowth has plagued Alex over the years, as it does many people with autism, but he typically responds well to antifungal medications. The thrush would also explain his decreased appetite because it causes his mouth and throat to be sore; hence, he doesn’t feel like eating. While this case of thrush was especially virulent and required repeated visits to the doctor and several rounds of antifungal medication, the yeast eventually was under control. Nonetheless, Alex’s lack of appetite continued.

Not only did Alex have little interest in eating, but he also developed anxiety issues around mealtimes. He would have panic attacks when it was time to eat, manifested in his body shaking, caused by adrenaline surges. While we had addressed the medical problems, then we had behavioral concerns about eating appear. Working with his behavioral therapist, we discussed ways to help Alex deal with his anxiety about eating. While we knew we had to encourage him to eat, we didn’t want mealtimes to be stressful for him. Consequently, to get him to eat, we allowed him to eat healthy foods that appealed to him instead of what we were having for dinner, permitted him to leave the table as soon as he was done eating, and let him eat lunch in his bedroom, as he requested. So long as he ate, we were willing to compromise our usual mealtime routines. However, this might not have been the best approach because his picky eating was not getting any better, even though his anxiety about mealtime did improve.

The third type of feeding issue in autism discussed in Marci Wheeler’s article is environmental, specifically sensory concerns. She explains that for many children with autism who have sensory issues, the look, feel, smell, taste, and even sound of food can be problematic when eating. For this reason, she recommends that parents assess their child’s eating patterns, considering what, when, with whom, how, and where their children prefer to eat. Once these preferences are established, parents can work with their children to encourage them to eat foods that are similar in taste, temperature, texture, and color to those they will already eat.

Since Alex’s current preference is for foods that are soft and smooth, especially applesauce and strawberry smoothies, I did an online search of foods recommended after dental surgery. Because we have ruled out any problems with his teeth and gums by taking him to the dentist twice in the past year, I suspect that he prefers these foods because they are quiet. After looking over the recommended foods, I made a list of those I thought Alex could try again, such as cranberry jelly, green beans, bananas, coconut milk yogurt, dairy-free lemon pudding, and turkey. Even though he has maintained his weight and takes vitamin, mineral, and protein supplements to make up for what nutrients his limited diet may be lacking, I knew we needed to expand his palate to make him more willing to eat the variety of foods he used to enjoy. Now I was ready to implement the excellent strategies outlined in the article about picky eaters.

In this article, Marci Wheeler offers not only tips for getting children with autism to eat but also explanations of why these approaches are crucial to success. A summary of her suggestions includes the following:
1. Parents must remain calm and not make mealtimes a struggle. Instead, eating should be a pleasant experience for the child, and the child needs to feel a sense of control.
2.  To help the child desensitize to sensory issues, children need gradual exposure to foods. Too many new foods at once can overwhelm the child. Moreover, offering a food similar to one the child already likes is more apt to be successful.
3. Sneaking other foods in preferred foods is not a good idea, as the child with autism is likely to detect the hidden food and may refuse to eat anything after that, fearing being tricked again.
4.  Eating with others is a social activity that needs to be encouraged, especially since others can model positive eating behaviors for the child. The time of sitting at the table may need to be increased gradually, and a timer may be helpful for the child to know how long he or she has to sit at the table.

While we had not pressured Alex to eat for fear of intensifying his anxiety about mealtimes, I knew we needed to be a little more encouraging. In addition, once I had come up with “new” foods similar to those he already likes, I decided to offer them gradually, list all their positive attributes, and praise Alex enthusiastically for trying them. (Knowing how keen Alex’s senses are, I have never tried to sneak any foods into him, fearing that he not only wouldn’t eat but also that he wouldn’t trust me about other issues.) Finally, this week, I changed the mealtime setting for him. Instead of eating lunch in his bedroom, as he preferred, he now must eat lunch at the kitchen table. Amazingly, he took my new directive quite well and didn’t balk at this change. In addition, I told him that he must sit at the dinner table with his dad and me, even when he is finished eating, so that we can have nice conversation. Again, he has taken this change remarkably well and seems to enjoy chatting with us while we eat. I’m also hopeful that we are desensitizing him to sensory issues while he sits there seeing, hearing, and smelling the food we are eating.

Although we have only just begun to implement the new feeding plan, we are hopeful that we are on the right track to helping Alex regain his healthy appetite. I’m thankful for the suggestions and explanations presented in the article because they have given me ideas about how to encourage Alex to make positive changes. We’re also pleased that Alex seems to be responding well to the changes, trying some different foods successfully, cooperating with our requests to eat at the table, and showing no signs of anxiety around mealtime. Most of all, we’re grateful to God, who guides us as we try to help Alex be happy and healthy. Hopefully, Alex will continue to increase the number of foods he will eat so that he can enjoy all the foods he once happily savored.

“Taste and see that the Lord is good. Oh, the joys of those who take refuge in Him!” Psalm 34:8

Sunday, May 20, 2018

Benefits of Cognitive Behavioral Therapy in Autism

Last month, Science Daily published an online article about new research touting the value of cognitive behavioral therapy for children with autism. [To read this summary article, “Cognitive behavioral therapy can improve emotion regulation in children with autism,” please click here.] Based upon an article published recently in the Journal of Child Psychology and Psychiatry, this research was done at York University’s Faculty of Health under the direction of Associate Professor in Psychology Jonathan Weiss.

In this study, sixty-eight children with autism aged eight to twelve years old were randomly assigned to two groups. The first group received ten sessions of cognitive behavioral therapy right away, and the others were on a waiting list to receive therapy. The therapy sessions involved teaching the children to develop the emotional tools they need to face challenging situations. Their parents were also part of the therapy sessions, acting as co-therapists, practicing what they learned with their children. As Dr. Weiss notes, “We believe that children grow and develop and improve within the context of healthy families and this intervention aids to help the family unit more broadly to be the agent of change.”

The children’s behavior and emotions were assessed at the beginning and end of the research study. To prevent bias, they were evaluated by a psychologist who was not involved in the therapy sessions and who did not know which children received therapy or were on the waiting list. Seventy-four percent of the children who received therapy were rated as improved in contrast to just thirty-one percent of those who did not receive therapy. In response to these findings, Dr. Weiss notes, “We showed that children who received this treatment right away improved in their ability to manage their emotions, and in overall mental health problems, versus kids who were waiting for treatment.”

This groundbreaking research shows that cognitive behavioral therapy can help children with autism deal with not only anxiety but also other emotions, such as sadness and anger. Learning to manage emotions is crucial in autism since more than seventy percent of children cope with emotional issues: about 50% deal with anxiety and another 25-40% struggle with anger or depression. Because of the success researchers in this study found in using cognitive behavioral therapy with children who have autism, Dr. Weiss concludes, “We can use this same intervention to improve children’s skills more broadly regardless of what emotional challenge they have. We can make them more resilient to many emotional and mental health issues.”

According to the Mayo Clinic website, cognitive behavioral therapy involves working with a mental health counselor in a structured way to learn how to cope with stressful situations in life. The goal is to see challenges more clearly and to respond to them more effectively. Therapy sessions often involve learning and practicing relaxation and coping skills as well as stress management. Cognitive behavioral therapy usually includes identifying problems in life; discussing thoughts, feelings, and beliefs about these problems; recognizing thoughts about these problems that are negative or inaccurate; and reshaping any negative or inaccurate ways of thinking.

Although many children with autism participate in applied behavior analysis therapy, Alex has truly benefited from cognitive behavioral therapy. Working one hour per week with his behavioral therapist (as opposed to the more than twenty hours per week typically found in ABA therapy), Alex has learned to verbalize his concerns and to recognize faulty reasoning. For example, he tends to exaggerate problems in his mind, thinking that they will last “forever” and “never” be solved. His therapist has taught him coping and calming skills so that he can rationally analyze a situation and feel more in control when anxiety strikes. Moreover, she has taught him positive affirmation statements to recite whenever he feels overwhelmed, such as, “Everything will be all right.” Because his mind is quite logical, Alex has responded to the methods of cognitive behavioral therapy very well, and we have seen significant gains in his behavior and ability to deal with his emotions. Moreover, we are grateful for the kindness, patience, and expertise of his behavioral therapist who recognizes his potential and strives to make him better.

Hopefully, the successful results found in the recent research study on using cognitive behavioral therapy to help emotional issues in autism will encourage other therapists to use this form of therapy with more people who have autism. As we have seen first-hand, cognitive behavioral therapy teaches valuable skills to cope with a variety of issues in life, even beyond those posed by autism. Once again, we are grateful to God for leading us to a method and a therapist who can provide Alex with the guidance he needs so that he can overcome the obstacles of autism and lead a happier and more productive life.

“Don’t copy the behavior and customs of this world, but let God transform you into a new person by changing the way you think. Then you will learn to know God’s will for you, which is good and pleasing and perfect.” Romans 12:2

Sunday, May 13, 2018

A Mother's Work

Last week when I went to vote in the primary elections, a friendly woman who regularly works the polls greeted me by name. The mother of one of my high school classmates, she has known me since I was a teenager. One of the first questions she asked me was whether I was still teaching at the middle school, and I told her that I had retired from teaching. Her next question, which other people have also asked me after finding out I retired early, was, “What are you doing now?” I suppose many people my age would use early retirement as an opportunity to find a second career, engage in volunteer work, and/or travel the world. However, I answered her honestly, explaining that I am taking care of my adult son with autism. Essentially, I retired from teaching part-time to becoming a full-time personal assistant to Alex and Ed. Frankly, I have no idea how I ever had time to teach and am thankful I could retire early.

In one of my favorite episodes of the television show Little House on the Prairie, Laura expresses disappointment to Ma that getting married means she won’t be able to become a teacher. Her mother, who had also been a teacher, reassures her that as a mother, she will play a variety of roles, including being a cook, a nurse, and most of all, a teacher, to her children. Certainly, of the many jobs I perform in my role as Alex’s mom, teaching has been one of the most fulfilling. Since we opted to home school him throughout his school years, we have been responsible not only for teaching him practical life skills but also academics, as well. Based upon his keen knowledge in a broad range of subjects and his love of learning, apparently Ed and I did a fairly respectable job as Alex’s teachers.

In addition to teaching Alex, I continue to carry out a variety of responsibilities as his mother. Even though he’s legally an adult, in many ways he is childlike because of the obstacles autism presents. His difficulties with language require that we often must speak for him, and his fine motor delays, coupled with hand tremors caused by anti-anxiety medications, hinder his ability to do many things independently. Nonetheless, I’m fortunate to have more time to do things for him and grateful that he’s generally quite cooperative in working with me to accomplish what we need to do on a daily basis. However, before I became his mother, I never realized all the things that mothers, especially special needs mothers, do for their children. Here is a list of some of my many roles as Alex’s mom:

1. Finder of Lost Objects––Alex misplaces something nearly every day, usually his iPad or pens for making lists. However, he’s quite predictable in where he leaves them, which makes my job fairly simple. In fact, I can usually lift a couch cushion and find a treasure trove of Bic pens that have fallen between the cushions where Alex was sitting. The most amusing task he gives me at least twice daily is, “Need to find Daddy.” Fortunately, Ed is quite predictable, too, and can generally be found in the family room downstairs.

2.  Scheduler––In this role, I am responsible for making sure that appointments with doctors, the dentist, and therapists are made regularly, and I keep track of the Chicago Cubs baseball schedule as well as the NASCAR schedule for Alex. I must always know whom the Cubs are playing, where the NASCAR race is that week, what time the game/race is on television, and what channel will be broadcasting the game/race. Over the years, I have discovered that Alex is like a good lawyer: he never asks a question he cannot answer himself. If I make a mistake in the information I give him, he will call me on it. Hence, I double check my information to ensure my credibility as his sports information source. In addition, I am also responsible for making sure that calendars and clocks are accurate, which is very important to Alex (probably so that he won’t miss a minute of a baseball game or NASCAR race). If the house timekeepers are not precise, Alex will let me know that we need to change them immediately.

3.  Health Management––This is a job Ed and I share, as we take turns being Alex’s pharmacist in administering his medications and acting as his personal dental hygienist. However, we do our tasks differently. For example, Ed counts Alex’s pills as he gives them, whereas I recite their names. Also, Ed makes brushing teeth into a fun game show activity, whereas I count off the number of seconds he’s brushed as his electric toothbrush beeps every thirty seconds. Despite our different methods, both of us are grateful that Alex is not only cooperative about these important tasks, but he also faithfully reminds us when it’s time to take his pills or brush his teeth.

4.  Personal Groomer––Another one of my roles is to make sure that Alex is clean and neat so that he makes a nice appearance. As his barber, I cut his hair and shave his face, and as his hairdresser, I shampoo, blow dry, and comb his hair. Fortunately, he likes being groomed, so he sits eerily still, almost mesmerized, as I do his hair. In addition, I give him manicures and pedicures, put lip balm on him several times a day at his request, make sure he uses deodorant every day, as well as finding and cleaning his eyeglasses throughout the day. Moreover, I’m also his laundress and valet who makes certain his clothes are clean and assists him with selecting and putting on those clean clothes daily.

5.  Personal Shopper––Since Alex can’t drive (a fact he reminds us whenever he’s upset about his lack of independence as an adult), he relies upon Ed and me to chauffeur him wherever he needs to go. However, he prefers to leave shopping to me, so I’m responsible for making sure that he never runs out of orange juice, note pads, and Epsom salt, among other things. While milk, eggs, and bread are snowstorm staples for most homes, orange juice, note pads, and Epsom salts are must haves at our house.

6.  Speech Therapist––Language doesn’t come easily for Alex, so we constantly encourage him to talk to us. Often, he uses pat (or perhaps pet) phrases that we enthusiastically reinforce. For example, we heartily agree when he reminds us several times a day that he “had a young voice in 1994” or that “It gets hot in Phoenix.” Also, I have to assure him repeatedly that I’m not the lady wearing the blue dress in the Claritin commercial, even though we look somewhat similar. Honestly, I’d like to be as young and slender as she is, and I like that he thinks she looks like me. Besides trying to develop conversations skills, we also work on his manners, constantly reminding him to use the magic words of “please, thank you, and you’re welcome.” Lately, if Alex really wants something, he will make sure we’re eager to serve him by telling us all three, “Please, thank you, and you’re welcome,” before even making the request. Clearly, he’s learning the power of being polite.

7.  Food Services­­––Even though Alex’s appetite is not what it used to be, making sure that he eats a healthy diet daily within the parameters of his gluten-free and dairy-free restrictions is crucial. Consequently, I act as his cook and waitress throughout the day. Since he wants to know the menu, I also announce the daily specials as a maĆ®tre d would, even though he wants to eat the same things every day. Because his hand tremors make eating some foods nearly impossible, I must also literally spoon feed him to make sure he eats enough. In addition, he likes to be part of the food preparation process, so I give him jobs to do as my sous chef and have him set the table and help clean up afterwards, which he enjoys doing.

8. Developer of Faith––Of all my jobs as Alex’s mom, helping him develop his faith is my most fulfilling and important. Seeing Alex’s faith and trust in God grow over the years has been gratifying because I know that faith will help him deal with all he will need to cope with in life. At the end of every day, the reward for completing my various tasks as Alex’s personal assistant is the opportunity to say bedtime prayers with him. As we thank God together for all of His goodness and ask Him to bless those we love, I’m awed by the peacefulness and sweetness of the moment and grateful for Alex’s childlike faith that gives him a sense of security before he falls asleep. As a mother, I’m immensely thankful I have been able to share with Alex the same faith my mother instilled in me so that he, too, can face the future with hope, confident that God loves him even more than I do. On Mother’s Day and every day, I can think of no greater gift.

“And I am certain that God, who began the good work within you, will continue His work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6

Sunday, May 6, 2018

Traveling Through the Dark

“Traveling through the dark, I found a deer…” William Stafford

Last Monday night, as Ed was coming home from taking sunset pictures at the Indiana Dunes, a deer suddenly ran in front of him on the dark highway. True to the saying, “like a deer caught in headlights,” the deer stopped in front of his car instead of continuing to run across the road. Fortunately, Ed was able to slow down enough that he didn’t hit the deer at fifty miles per hour. After doing some damage to the plastic pieces on the front of the car, the deer continued running on its way across the highway and into the woods.

Knowing that his encounter with the deer could have been much worse, Ed felt a brief sense of relief that was short-lived. Another car behind him apparently did not see his car stopped by the deer in time and rammed into the back of Ed’s car. Thankfully, neither Ed nor the other driver was hurt at all, but Ed’s car suffered more damage from the second hit. Using the cell phone I bought for him, despite his dislike of using the phone, keep charged for him, and insist that he carry just for circumstances like this, he called the police to file an accident report.

The police officers, like everyone we have dealt with in the aftermath of this accident, were exceptionally kind and helpful. When Ed came home in his drivable but damaged car and told me he’d been in an accident, my only concern was whether he had been hurt. After watching many medical shows over the years, I knew what questions to ask about potential symptoms of head injuries and whiplash and asked repeatedly if he should go to the emergency room to be checked. After reassuring me that he had come through the accident without a scratch, I thanked God for watching over him and keeping him safe.

The next day while Ed was at work, I handled phone calls from our insurance and the other driver’s insurance, taking careful notes so that I could relay the information to Ed. In addition, I spoke with the company that will provide a rental car while ours is being fixed as well as the body shop that will repair the car. Everyone I talked to was helpful and kind, beginning each conversation by showing concern, asking if Ed had been hurt in the accident. Once I told them that he was fine, they commented that as long as he was all right, nothing else mattered. I totally agreed with their assessment of priorities.

The following evening at dinner, I noticed a mark on Ed’s neck and immediately thought the seat belt from his car had either bruised or scraped him. After accusing him of minimizing an injury, Ed insisted that his neck was fine and went to the bathroom mirror to see where I was pointing. Apparently, my medical skills gained from television shows were lacking, as the “injury” I found was only a bit of chocolate from candy he’d been eating.

Not wanting to worry Alex, we have tried to keep our discussions about the accident minimal in front of him, but his acute hearing and fondness for eavesdropping made secrecy impossible. Not to mention, he overheard the assorted phone calls from the insurance companies in which we had to explain what had happened. As we told him about his dad’s car accident, Alex seemed to take the information seriously but calmly, especially since we reassured him that his dad was fine and that the car will be repaired.

With claims filed for insurance, estimates made of expenses, and parts being ordered to repair the car, now we just wait. After the initial flurry of concerns and details to be tended, Ed and I have viewed this experience in different ways. He’s frustrated that his car is damaged and will be in the shop for a week, but I’m thankful that he walked away from the accident totally uninjured. Moreover, I’ve reflected on how this accident is in some ways a metaphor for our life with autism. Like the deer, autism seemed to appear out of nowhere, impeding our path as we were traveling along through life. After facing autism head on, we have also encountered the second unexpected hit from behind in various ways: struggling to find professionals to help Alex, dealing with extreme anxiety and aggression, and working to heal his gastrointestinal issues. As if autism were not enough with its impact on language, motor, and social skills, the additional financial, mental health, and medical issues prove challenging to families like ours.

Nonetheless, just as the police officers and the employees of the insurance agencies, rental car company, and body shop have helped us in dealing with the aftermath of a car accident, therapists, doctors, researchers, and other parents have guided us in dealing with autism. While these experiences were new to us, others with more experience and expertise could help and guide us as to what we needed to do to move forward. Most importantly, we know that nothing comes as a surprise to God, who watches over us and guides us through every circumstance in life. While we don’t know what Alex’s future holds, we do know that God holds Alex’s future. Holding fast to our faith, we trust that God will guide us along paths we cannot see and help us move past obstacles, just as He always has, fulfilling the good plans He has promised.

“Thy word is a lamp unto my feet, and a light unto my path.” Psalm 119:105

Sunday, April 29, 2018

Autism Awareness: The 2018 CDC Report

“We will fight, not out of spite, for someone must stand up for what’s right. ‘Cause where there’s a man who has no voice, there ours shall go singing.” ~ “Hands” by Jewel Kilcher and Patrick Leonard

A few days ago, as Autism Awareness Month nears the end, the U.S. Centers for Disease Control and Prevention (CDC) released a new report regarding how widespread autism is. [To read this report, please click here.] Based upon data collected by The Autism and Developmental Disabilities Monitoring Network (ADDM), the new rate of autism is the highest ever, with one in 59 children in the United States estimated to have autism.

According to the CDC report, the data collected by the ADDM focused upon children who were eight years old because most children with autism are diagnosed by age eight. However, the report is typically published four years after the survey year, which means those children in the current report are now twelve years old.

Perhaps more enlightening is to observe the increase of autism in the past decade as shown in the ADDM data. [To read this CDC report, please click here.] Specifically, the data on autism prevalence is as follows:
In the 2009 report on 2006 data, the rate of autism was 1 in 110 U.S. children.
In the 2012 report on 2008 data, the rate of autism was 1 in 88 U.S. children.
In the 2014 report on 2010 data, the rate of autism was 1 in 68 U.S. children.
In the recent 2018 report on 2014 data, the current autism rate is 1 in 59 U.S. children.

Despite these significant increases, the CDC doesn’t seem terribly concerned and only offers two suggestions––early diagnosis of autism and early intervention. However, the CDC report also notes that the median age for the earliest diagnosis of autism is 52 months. Apparently, this figure is relatively the same for both genders and all ethnicities. While 85% of children with autism have documented mentions of developmental concerns by age 36 months, only 42% had been thoroughly evaluated for autism by 36 months.

While early diagnosis and intervention is certainly a good idea, clearly this is not happening. Perhaps more doctors need to be trained in recognizing early signs of autism, and more resources need to be available so that children can benefit from early assessment and intervention. However, with the rapidly increasing numbers of children who have autism, the waiting lists for autism intervention services are also increasing.

In the Public Health Action section of the CDC report, the agency notes that because of the prevalence of autism, “…the need for behavioral, educational, residential, and occupational services remains high, as does the need for increased research on both genetic and nongenetic risk factors for ASD.” Sadly, most of the government-funded research offers little hope toward finding a cure for autism. Consequently, even more government funds will be needed to treat, teach, house, and employ the increasing number of children and adults with autism. At what point will the CDC recognize that autism is a major health crisis in this country?

In response to the recent CDC report, Time magazine published an article online on April 26, 2018, entitled “This May Be Why Autism Diagnoses Are On the Rise, According to the CDC.” [To read this article, please click here.] Written by Jamie Ducharme, the article notes that, according to the CDC, the highest ever rates of autism are probably due to better diagnosis and reporting of autism, especially in the black and Hispanic communities. However, the CDC report actually indicates that age of diagnosis for all ethnicities is fairly similar. Nonetheless, this article perpetuates the myth that the actual rate of autism isn’t increasing; only better diagnosis and data could possibly have caused the increase. To further the improved diagnosis cause, the author quotes a chief medical officer at the CDC, Dr. Stuart Shapira: “It’s likely in part due to better identification, more screening and referral to services.” Even Dr. Shapira hedges the better diagnosis reasoning as the cause for autism increases with his “likely in part” qualification.

Offering only the suggestion of better diagnosis and data for the rising autism rates, the author also echoes the CDC stance on the importance of early diagnosis and intervention. The article quotes CDC expert on developmental disabilities Dr. Daisy Christensen: “The soonest a child can be identified and connected to services, the better chance they have at reaching their full potential.” Again, because so many children have autism now, many must wait to be evaluated, and even after they receive autism diagnoses, they must wait longer to receive funding and services they desperately need. In an ideal world, children would receive autism diagnoses as soon as possible and then immediately begin receiving therapies to develop their skills. In a truly ideal world, no child would have autism.

Ironically, the CDC motto is “Saving Lives, Protecting People,” yet the CDC has failed to make significant progress in determining the true cause of autism. As a result, many children with autism have drowned in deep water and been hit by cars as they wandered from places of safety. Others have struggled with serious medical conditions, such as seizures and severe gastrointestinal disorders. Still others deal with anxiety, bipolar disorder, and OCD. These people with autism, nearly half of whom cannot speak, must be protected.

As we near the end of another Autism Awareness Month, the CDC appears to be no closer to solving the puzzle of autism. We need to stop counting eight-year-old children with autism and figure out how to help them and all the other people with autism. Furthermore, the CDC must allocate funds more judiciously to find the cause of autism in order to find a cure. In less than ten years, the rate of children with autism has nearly doubled. Those eight-year-old children with autism grow up to be adults with autism. Ignoring or even minimizing this public health crisis will not come to a good end. As the parent support group Talk About Curing Autism wisely proclaimed in response to the CDC report last week: “It’s time to care.”

“The Lord hears His people when they call to Him for help. He rescues them from all their troubles.” Psalm 34:17

Sunday, April 22, 2018

Person-Centered Planning

On Friday, we had our regular quarterly meeting with Alex’s support team. Like IEP and case conference meetings held for students, the quarterly meetings allow us as parents to discuss Alex’s progress, gain input from the professionals who work with him, and make plans to keep him moving forward. Since Alex is doing well, especially considering that he has been able to have doses of three medications reduced successfully and one discontinued completely in the past year, we anticipated that the meeting would go smoothly. In addition, we are blessed to have fantastic support professionals who not only know how to bring out the best in Alex, but also celebrate with us the achievements he is making along the way.

The State of Indiana has recently begun person-centered planning with clients who have disabilities, so we knew this would be a primary focus of our meeting. Using a model called Life Course Tools (which is available online at, the state has begun developing portfolios for “Charting the Life Course,” which is a lengthy process. Case managers are expected to discuss with individuals and their families eight life domains: daily life employment, community living, social and spirituality, healthy living, safety and security, citizenship and advocacy, supports for family, as well as supports and services. By asking various questions, the goal is to develop a plan for the future, a “life vision,” that allows a “full, inclusive, quality life in the community.”

Having read the materials online prior to our meeting, I was uncertain how Alex might answer these questions, especially since some of them seem rather abstract. However, he did amazingly well at providing the information needed to begin developing his plan for the future. With the reduction of medications, we have noted that Alex has been able to answer questions with less reliance on us to speak for him. He’s more alert and more decisive; moreover, his eye contact, volume, and speech have improved greatly. As he answered various questions, he looked at the person speaking to him, spoke up, and used complete sentences to convey clearly his ideas. His calm manner reflected his improved social skills, and his ability to express himself without asking us, “What would be good?” showed increased independence.

Noting his improved social skills, we explained that Alex is learning to use manners without constantly being reminded. When we asked him why that was important, he said that he didn’t want to be “rude” and then commented that not using manners is “disrespectful.” He displayed politeness by not interrupting others and by answering any questions asked of him, showing that he was paying attention and wanting to engage with other people. Moreover, he never complained that the meeting was taking too long, as he has at times in past meetings.

To gain insights into Alex’s priorities, his case manager asked him what kinds of things he enjoys. He listed "game shows, Walmart, Nanny’s house, and V.U." When asked for more specific details, he said that he likes The Price Is Right and Wheel of Fortune, shopping at Walmart because it’s a big store, going to his grandparents’ house because it’s “special,” and going to basketball games at Valparaiso University. His response came as no surprise to us, knowing what’s important to him. When asked what he likes to do, he said hiking at Coffee Creek (a nature preserve near our home) and going to concerts in the park. When he was asked what he’s good at, he immediately said math, and when asked about his ideal job, he said meteorologist. Some things never change; he has loved math since he was little and has told us for more than twenty years that he’d like to be a meteorologist someday. His love of numbers and weather has never waned over the years, and he clearly knows what he finds interesting. When we were asked what types of jobs we thought Alex might do someday, I mentioned that his computer skills, especially his excellent keyboarding skills, along with his attention to accuracy and details, might be used well in a job involving computer coding. His case manager seemed to think that could be a good match of his interests and abilities.

When discussing future living arrangements, his case manager asked Ed and me where we thought Alex would live “for the rest of his life”—at home with us, in a group home, or in supported living with a roommate and a caretaker in an apartment. A few years ago, we were told that Alex would likely live with us until we’re in our eighties because funding and housing for adults with disabilities is limited primarily to those with greater needs. We decided that we would make the best family life possible knowing that Alex will live with us for many years, and we are fortunate that he is quite pleasant 99.9% of the time. However, the “for the rest of his life” part of the question seems tricky.

While Ed and I confidently said, “I do” in our marriage vows with the stipulation “for as long as we both shall live” without hesitation, thinking about the rest of Alex’s life is different. For one, he is likely to outlive both of us, and we worry about who will care for him once we’re gone. In addition, autism has taught us to live one day at a time, one step at a time, one milestone at a time. Looking down the road too far can be overwhelming, thinking of all the skills to master and things to do, so we focus on accomplishing one thing at a time. Planning for the future is not the same with a child who has autism.

Moreover, I wondered how our response to the living arrangements inquiry reflects upon us as parents. If we want him to live at home with us, does that make us overly protective parents or simply caring ones? If we want him to be in a supported living arrangement with a caretaker, does that make us selfish parents or simply ones who want him to be independent? As the emotional mother, I responded that we thought Alex would probably live at home with us for a long time, and we are happy to have him here. As the rational father, Ed wisely added that we want Alex to be as independent as he can be and hoped that someday he might be able to live on his own. Knowing that is ultimately what’s best for Alex, especially since we may not always be able to care for him, I agreed with Ed.

Ironically, I thought the difficult part of person-centered planning would be getting answers out of Alex, but he had less trouble responding to the questions than I did. He has developed a clear sense of his likes and dislikes and strengths and weaknesses and has learned to express what he wants and needs. However, I over think things too much and should take a cue from Alex about just answering candidly. I’m sure this process of developing his Life Course plan will make me ponder many aspects of Alex’s life, and I hope I gain more insights along the way.

Apparently, his case manager was quite pleased with how well the meeting had gone, as she told us more than once how “easy” we had made things for her and remarked that we had given her quite a bit of good information to include in Alex’s portfolio. Moreover, she commented that she rarely sees “success stories” in her field, but that Alex has, indeed, been a success story with the progress he has made. Interestingly enough, Alex’s behavioral therapist used that same phrase recently, when she told me that she will be presenting Alex’s “success story” at her company’s annual meeting next month. To think that six years ago, we were overwhelmed as to how to help Alex overcome his extreme anxiety and aggression, and that now his team views him as a rare success story is truly a blessing. As we continue to look forward to Alex’s future, whether it be in the coming days, weeks, months, or even years, we thank God for the wonderful people He has sent to help Alex and for the prayers He has answered and will continue to answer to help Alex succeed.

“May He grant your heart’s desires and make all your plans succeed. May we shout for joy when we hear of your victory and raise a victory banner in the name of our God. May the Lord answer all your prayers.” Psalm 20:4-5

Sunday, April 15, 2018

What Science Says About Autism

Last week I found two links to websites I thought would offer insights into possible causes and treatments for autism. Unfortunately, I was disappointed. However, the information from these links is worth sharing because both sites reveal bias and attitudes some scientists and doctors hold regarding autism research. Moreover, they demonstrate the limitations in providing care for patients with autism offered by those who ascribe to these viewpoints.

In the first article, “Autism Awareness Month: All The Things That Don’t Cause Autism,” microbiologist Dr. Alex Berezow condescendingly eliminates various potential causes of autism except genetics. This article, which was published April 5, 2018, on the website for the American Council on Science and Health, of which Dr. Berezow is Senior Fellow of Biomedical Science, uses inflammatory language to prove his point. Specifically he refers to one theory as being believed by “at least one lunatic” and notes that some parents “stink” at parenting skills. [To read this article, please click here.]

Especially incensed by the theory that vaccines cause autism, he attacks Dr. Andrew Wakefield’s “study” [Dr. Berzow’s use of quotation marks, not mine] as a “sham” and calls Dr. Wakefield a “fraud.” So certain is Dr. Berezow that no link exists between vaccines and autism, he asserts, “A substantial proportion of people refuse to accept the reality that vaccines do not cause autism.” Perhaps so many people disagree because his declaration may not be “reality.”

While Dr. Berezow goes on to name various environmental factors, such as immune factors, pollution, and pesticides, he believes that their effect upon autism is marginal. Moreover, he states that pesticides are “used at safe levels in the U.S.” and that the “U.S has some of the cleanest air in the world.” Perhaps he sees toxins as less of a threat to health than many autism parents do. Apparently, Dr. Berezow has autism all figured out–-it’s “50% to 95% genetic.” That strikes me as a wide range, and I’m curious as to what the other 50% to 5% may be. Finally, he warns those who fail to heed his infallible expertise regarding genetics as the only cause of autism: “Be skeptical of claims to the contrary.”

The second website also proved to be less than helpful. The Association for Science in Autism Treatment’s (ASAT) website purports to offer medical professionals “an array of resources that will keep you apprised of the state of the science with respect to the hundreds of treatments for autism, many of which are biomedical in nature.” [For a link to this website, please click here.] Despite their motto, “Real Science, Real Hope,” there doesn’t seem to be much hope offered on this website.

In the summaries of biomedical autism treatment, only one method is listed under “What works or needs more research”: selected medications, specifically psychotropic medications, such as Risperdal, Ritalin, Prozac, and Abilify. Recommending these drugs for severe aggression, hyperactivity, and other disruptive behaviors, this website notes that these medications are effective interventions for some people with autism. Certainly, medications can be helpful with difficult behaviors found in autism, but these medications can also have negative side effects, and offering only medications as biomedical treatment gives few options to doctors and their patients.

In contrast, twelve biomedical treatments are listed as “What doesn’t work or is untested”: anti-fungal and anti-yeast medication, chelation therapy, craniosacral therapy, herbs and homeopathic treatments, hyperbaric oxygen therapy, iridology, magnets, marijuana, neurofeedback therapy, secretin, special diets, as well as vitamin and supplement therapy. These methods are likely listed because anecdotal evidence shows that parents have found these methods helpful to their children with autism. However, this website destroys the credibility of each of these treatments one by one, explaining how they are of little or no use.

For example, anti-fungal medications to treat yeast infections in the digestive system have been critical to Alex’s health and well being when he has had Candida overgrowth, evidenced by thrush infection in his mouth. When he has yeast infections, he is irritable and agitated, probably because he doesn’t feel well. Nonetheless, ASAT discounts ant-fungal medication as “untested as a treatment for autism spectrum disorders” and suggests that medical professionals warn families about potential side effects of the medication.

Additionally, we pursued chelation therapy with Alex because he had high levels of the toxins arsenic, lead, and mercury in his system. However, ASAT states: “It is doubtful that individuals with autism spectrum disorder have high levels of heavy metals or that chelating agents would be effective in reversing neurological damage from metal exposure.” Furthermore, ASAT describes chelation therapy as “implausible and unacceptably risky” because it “may cause severe side effects and even death.” They conclude that chelation therapy is an “inappropriate treatment for autism spectrum disorders.” However, allowing toxic metals to remain in the body of a child with autism can also cause severe side effects and even death. To discount the possibility that toxic levels of heavy metals exist in children with autism is to ignore a serious health issue. Doctors need at least to test for heavy metal toxicity before discounting chelation therapy.

Another treatment method ASAT discourages is special diets, such as the gluten-free and casein-free diet, based upon two studies that “found no evidence of benefit from the gluten-free, casein-free diet.” Furthermore, ASAT states, “There is a risk that removing gluten and casein from an individual’s diet will lead to inadequate nutrition…” Consequently, ASAT recommends, “Professionals should present diets as untested as a treatment for autism spectrum disorders…”This stance fails to recognize that many children with autism have allergies or sensitivities to glutens found in grains and caseins found in milk products and benefit from removing these foods from their diets. Certainly, people with autism should be tested for gluten and casein intolerance before dismissing special diets as treatment for autism. Moreover, the study I cited in last week’s blog entry indicates that special diets prove quite beneficial for people with autism; apparently, ASAT has not yet read that extensive research report.

Similarly, that same research report cites the value of vitamin and mineral supplements, yet ASAT does not recommend nutritional supplements to treat autism. Specifically, they describe vitamin B6, magnesium, and omega 3 fatty acids as “ineffective in changing behavior.” Additionally, they note that vitamin B12 and carnitine show “little evidence of positive effects on behavior.” Perhaps they need to do more extensive research before discounting the value of nutritional supplements instead of relying on only a few studies. In addition, people with autism should be tested for nutritional deficiencies before determining they will not benefit from vitamin, mineral, essential fatty acid, and amino acid supplements.

Essentially, ASAT offers only one biomedical treatment––psychotropic medications––while dismissing several other treatments that may, indeed, be helpful to patients with autism. By encouraging medical professionals not to recommend these treatments to their patients with autism, families may miss out on methods that would help their children with autism. Until a definitive cause of autism can be established (and unlike Dr. Berezow, not everyone is convinced genetics is the only cause), patients with autism should have a variety of treatments available to address their various medical and nutritional needs. The availability of simple tests to assess medical conditions commonly found in autism, such as yeast overgrowth, heavy metal toxicity, food allergies, and vitamin deficiencies, makes diagnosing these issues easy. However, doctors must be willing to look for medical causes of behaviors found in autism and be willing to treat them with those methods ASAT discounts as “untested” or “unsupported by research.”

When people with autism have proper medical treatment and can regain their health, they are likely to feel better, behave better, and learn better. Despite the scientific training of those like Dr. Berezow and the medical professionals behind ASAT, they fail to see that medicine is an art as well as a science. Patients with autism must be treated as individuals whose needs should be evaluated and addressed. Ignoring medical problems not only hinders their progress, but it also impairs their quality of life. Consequently, parents must advocate for their children’s health with their children’s doctors to make certain they receive necessary treatments, seeking the healing they so desperately need, and remembering that God’s healing power is not limited by research studies.

“Stretch out your hand with healing power; may miraculous signs and wonders be done through the name of your holy servant Jesus.” Acts 4:30