Pleasant Plateau

For the past few weeks, every evening after Alex goes to bed, Ed will remark in a questioning way, “He’s been good all day?” When I nod and answer in the affirmative, Ed will say, “Knock wood, he’s doing really well,” and we will both rap our knuckles on the nearest wooden table. Knowing that I really shouldn’t buy into this superstitious ritual and should give proper credit, I add, “Praise God!”

Because Alex’s progress has not been a linear path as we have seen setbacks along the way, we fear speaking about the good could somehow make him regress. When he is dealing with anxiety that causes his behavior to decline, we pray mightily for change. However, when Alex is sweet and calm, as he has been lately, we worry that doing anything differently might cause an unwanted change.

For years, we have prayed for God to heal Alex. At times, frustrated by regressions and waiting, I have been jealous of those who have experienced complete healing from autism. Researching diligently, I have thought if I kept reading and praying, I could find a cure for Alex. While some children with autism have been healed by chelation therapy to remove heavy metals, vitamin B12 shots, special diets and nutritional supplements, and other methods, none of these gave us the miracle I desperately sought. Nonetheless, the efforts have been worthwhile because these interventions did make him better.

In addition, I have been frustrated that acne has left mild scars on Alex’s face, even though he cooperated with methods to treat the inflammation and never picked at his face. He also has a small bald spot left behind by a minor scalp infection, folliculitis, that we treated immediately under medical supervision. Thinking that Alex has suffered enough from the obstacles autism has presented, I hate that he has small scars as reminders of previous infections.

However, perhaps these minor flaws are evidence of healing, reminders that sickness is not a permanent state. Over time, the acne scars have faded their angry redness, and the bald spot has shrunken from the size of a silver dollar to that of a penny. I cut and comb his hair to cover the small bald spot so that no one really sees it, and the acne scars along his hairline are fading with nightly applications of Mederma scar cream and time. Most importantly, these slight imperfections don’t bother Alex a bit. The only mirror he uses is a toy mirror that softens and slightly distorts in its reflection, much like that described in I Corinthians 13:12: “Now we see things imperfectly, like puzzling reflections in a mirror…”

Nonetheless, we still battle infection and its lasting effects. Two years ago, Alex had a bad case of yeast infection in his mouth and throat that ruined his healthy and hearty appetite. While we have been praying that he would regain his love of nearly all foods, he still chooses to eat a rather limited diet. Even after the yeast infection has been controlled by weekly doses of anti-fungal medication and after working with a fantastic speech therapist to overcome sensory issues related to eating, Alex is still a picky eater, which is not uncommon in autism. However, sometimes he will surprise us and ask for a food not usually part of his chosen menu and devour it happily.

Since we have seen him overcome other issues with time, we wait expectantly for the day when he returns to his varied appetite. Furthermore, we are thankful that he has regained the weight he lost from his self-selective diet because he has cooperated with drinking nutritional non-dairy protein smoothies I make for him every evening to increase his daily calorie intake. Every week as I weigh him on our old-fashioned doctor’s scale, I say a prayer that I can push the bar a little farther to the right, and God has been faithful, as Alex has continued gaining weight at a healthy pace.

Along with gaining weight, Alex has also shown reduced anxiety lately. He’s not just content but happy, skipping through the house and grinning from ear to ear. He has once again enjoyed going places, and he’s chatty and interactive, making appropriate comments that intrigue and amuse us. For example, he nicely asked me the other day to adjust his wristwatch because “It’s too close to the armpit.” Mind you, it was just a little above his wrist, but the exaggerated description made me laugh. The professionals who work with him have also noted how well Alex is doing and have commented on how pleasant and observant he is, asking good questions. Last week, his companion came to stay with him while Ed and I enjoyed lunch at a restaurant. When we returned, she told us that he had been “perfect.” She also shared that when she asked him who was winning the baseball game he was watching on television, he told her––knowing that she’s not a fan of the sport––“The team that has the most points is winning.” She found his literal explanation amusing; he was trying to explain something he thought she didn’t know.

When we reach these pleasant plateaus where things are going smoothly and every night and day I thank God that Alex is doing so well and Ed and I knock on wood in hopes of keeping the trend going, we closely analyze circumstances to make sure nothing happens to change the peaceful existence we gratefully savor. However, sometimes things occur that we cannot control. A few weeks ago, we learned that one of the medications that helps keep Alex calm is no longer available. Despite the best efforts of a dedicated pharmacist, we cannot get that medication, so the nurse practitioner who prescribes Alex’s medications has given us a plan to wean him off that drug.

While my first instinct was to panic that this change would upset Alex and cause a setback, I had to remind myself that God sometimes shoves me forward with both hands because He has plans to move Alex into something new and better. Although I would have preferred to enjoy the pleasant plateau a bit longer, not being able to get this medication means that we must make a change. Remembering that Alex has always responded to medication reductions favorably, I prayed that this change would be equally smooth for him. As we have decreased his doses over the past few weeks, he doesn’t show any negative side effects. If anything, he actually seems even better with this medication reduction, and we pray that once we take him off completely, he will continue to do well and perhaps even get better. I have to believe that God was showing us that Alex no longer needed this medication because the weaning process has gone so well, and Alex continues to be calm and good natured.

Perhaps healing looks different than I had imagined. Certainly God’s ways and plans are better than mine. Maybe God reminds me that all my searching for a cure is not nearly as important as trusting Him to make Alex better. Definitely, I have witnessed His hand in our lives, guiding us and healing Alex in unexpected ways that make us know He was responsible. For us, healing and progress have rarely been the sudden and dramatic changes I prayed for and expected, but instead the culmination of small signs that reveal God has been there all along. Knock wood and praise God!

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19

The Comfort in Letting God Lead

Recently, I ran into an acquaintance, another autism mom I hadn’t seen for a while. Our sons are about the same age, and she has remarked that Alex reminds her quite a bit of her own son, whom I’ve never met.  When I asked her how her son was doing, a look of sorrow came over her face as she explained that he is very ill. Imagining how I would feel if Alex were in the same situation, I expressed my genuine concern and told her how sorry I was to hear he is so sick. Then, she candidly admitted, “I don’t know what God is thinking.”

Unsure of the right words to say to her, I could only earnestly respond, “I don’t know, either.” Nothing I could say would minimize her worry or fears, yet I hoped that she found some comfort in being able to say what she was feeling to another mother who could understand all the struggles she has faced throughout her son’s life. Moreover, while she doesn’t understand God’s plan now, she knows He has one. As I have been praying for her and her son to have peace as they wait on the Lord, I have been thinking about how we can comfort those in need, especially since I know others I care about are also currently carrying heavy burdens.

In Chapter 9 of his inspirational book, Aching Joy, pastor and autism dad Jason Hague describes how well-meaning friends sometimes offer platitudes instead of the true comfort we really need. Specifically, he mentions the adage, “God never gives you anything you can’t handle.” He notes, “This phrase is not biblical, despite what people think.” He goes on to explain, “I hate the implication that God serves up such hardships like a waiter…” Although he notes that we have strength and resilience to deal with hardships, we cannot endure them alone. As he explains, “No matter how high the water rises, the God of Moses carries us on his shoulders. In our weakness, he is strong. And since we walk with him, he makes us strong, too.”

Perhaps our own experiences and struggles can allow us to be empathetic and compassionate to those who truly need comfort instead of just spouting glib phrases. If we share those times of darkness and doubt, others can see that God brought us through them, offering hope for the future. In 2 Colossians 1:4, the apostle Paul writes, “He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.”

As much as I would like to erase completely from my memory the trying times we faced when Alex’s behavior was fueled by extreme anxiety and spiraling out of control, I hope that sharing our experiences might help others. When we didn’t know what to do to help Alex, God led us to professionals who did know what to do. While helping Alex get better took a long time and a true test of our faith, we can look back and know that God had a plan. However, at the time, I kept trying to direct the situation myself and felt frustrated that God wasn’t answering my prayers on my timeline. When I finally relinquished control to God, putting my complete trust in Him, things started to fall into place. I had to admit that I didn’t understand why we had to go through all these struggles, but I trusted that God’s ways were better than mine. And they were.

Often, I’ve told people who know me well that I think one of the main lessons God wants me to learn in life is patience. Some of them have told me that they think I’m very patient; however, I’m still not naturally patient, in spite of the lessons God has given me. Instead, I think of myself as just tenacious, plugging away at making Alex better while strengthening my faith. As someone who likes to plan and organize every detail, I still have to be reminded that I’m not as in charge as I like to think I am.

Last week, on a smaller scale, God put me in my proper place again. With good intentions and well-thought plans, I was going take Alex completely off one of his medications. Since I already had the approval of his psychiatric nurse practitioner to make this change, and because Alex had responded well to prior dosage reductions of this particular medication, I felt certain this was the right time. Three days into the plan, his nurse practitioner’s office called to tell me that Alex’s thyroid hormone levels tested too high. Consequently, he needed to reduce his thyroid medication dosage by half immediately. Because we never do more than one medication change at a time so that we can easily note any reactions, I knew that we would have to abandon the plans to eliminate the other medication for now.

Even though I was frustrated and disappointed that we couldn’t move forward with getting him off the other medication, I realized that God had a different medication reduction plan than I did. Perhaps now is not the right time to remove that medication, and I need to trust that God, the great healer, knows better than I do. Certainly, any medication reduction is a cause for celebration, and God reminded me that He has a plan that supersedes any of mine. If I had any doubt or lack of faith, I have been comforted that Alex has responded quite well so far to the reduction in thyroid medication. Once again, I have to trust that God’s ways are always better than mine. And they are.

“When doubts filled my mind, Your comfort gave me renewed hope and cheer.” Psalm 94:19

"All Is Calm; All Is Bright"

 

I don’t like change; in fact, most of the time I’m perfectly happy staying in a familiar rut. Sometimes, God has to give me multiple signs in order for me to do something different, to step out of my comfort zone. Recently, a series of small jolts pushed us to make changes in Alex’s best interests, and so far, the results have indicated that doing something new was absolutely the right decision.

About two weeks ago, when I went to pick up Alex’s medications at the pharmacy, one of them mysteriously was not with the others. The pharmacy technician was puzzled as to why it was missing, but assured me she would check on it and felt confident it would arrive that afternoon. Later in the day, I received a call from the pharmacy that the medication still had not arrived, but they would order it again and hoped it would be ready for pick up the following day. Even though I was confused about the delay on the arrival of the medication, I wasn’t that concerned because I still had a week’s worth.

The next afternoon, I had a message on our answering machine from the pharmacy that not only had the medication still not arrived, but it was also on backorder, and they didn’t know when they could get it. Now I was getting nervous. I called the pharmacy to find out more, and the pharmacy technician told me the company that manufactured that particular drug had stopped producing it. A Google search after I got off the phone gave a hint as to why they suddenly stopped manufacturing it; they had to recall several batches of this time-release drug because apparently it was not properly releasing the doses throughout the day.

When I asked the technician if they could get the medication from another company, she told me that it was the only company who made the drug. Knowing that was not correct because in the past Alex had taken the medication made by another manufacturer, I told her there was another company, but she insisted there was not. (Another Google search confirmed that I was correct as I found the name of the other company.) She did tell me another store in a nearby town had some, but we would have to transfer the prescription and go to pick up the pills ourselves. Not happy with the news she had given me, I nonetheless thanked her for the information and hung up the phone to ponder our options.

At this point, I was verging into panic mode. What were we going to do if we couldn’t get this medication for Alex? I decided to go to the pharmacy the next morning and talk to a pharmacist in person and explain my concerns about finding the medication soon. The pharmacist understood my concerns and immediately tried to track down Alex’s prescription. She scoured the warehouse records, tried to order more, and even called a competitor’s pharmacy to see if they had any in stock. In addition, she passed along the information to the pharmacy manager, including the name of the other company that manufactures the drug, which I had given her.

The next day I received notification that Alex’s prescription had been filled, which came as a huge relief. When I went to pick up the pills, there was a note that they had gotten them from the store in the nearby town––saving us a trip there––and that they were still trying to track down this medication from their warehouse. While I was delighted to have enough pills to administer twice a day for a month, we still don’t know if the pharmacy will be able to get more next month. Perhaps this was God’s way of telling me it was time to wean Alex off this medication, as we had done with two others successfully.

Contacting the psychiatric nurse practitioner who prescribes Alex’s medications for anxiety, I sent her an email explaining the shortage of this particular medicine. First, I asked her what medication could substitute for the one he’s been taking, and then I asked if we could try weaning him off the medication by forgoing the nighttime dose, since he’s sleeping and wouldn’t be bothered by possible side effects as much. In her email response, I found out the replacement drug is one I really don’t want Alex to take because it has terrible side effects. However, she did agree that he could try not taking the nighttime dose and see how he does.

After discussing our options with Ed, we agreed that now is the time to try taking Alex off the nighttime dose since he’s doing well managing his anxiety. So, last Monday, for the first time in years, we did not give Alex the nighttime dose of that medication. Although I worried that he might have trouble going to sleep or might wake in the night or could wake up in the morning irritable without that dose, he fell asleep easily, slept peacefully through the night, and awakened in a sweet mood. Moreover, he was sweet natured every day last week, despite having his medication reduced by half. Clearly, taking away the nighttime dose was the right thing to do, and we are thankful that he doesn’t seem to be having any negative side effects from this change.

Early Thursday morning, Alex awakened me around 4:30 A.M., and a sense of dread awakened with me. Was the lack of medication affecting his sleep, and would he be agitated? No, he simply wanted to inform me that the power had gone off briefly in the night, and he calmly told me that his alarm clock wasn’t working. As I stumbled into his darkened room, half asleep and terribly nearsighted, I tried to see what was wrong with his clock, plugging it in different outlets, but having no luck.

Since time is very important to Alex, even in the night, I was concerned that he would be very upset that his clock would not work. No, he sat calmly on his bed, even amused that I was clumsily doing everything I could to make his clock work. Finally, I told him that his clock was broken, but I would go to Target when they opened and buy him a new one. Completely satisfied and not a bit irritated, he smiled, crawled under his covers, and went back to sleep. If I had any lingering doubts about taking away the nighttime dose of medication, they were gone. Alex calmly handled a situation that could have upset him in the night without the medication regulating his mood. There in the dark, sleepy, and half-blind, I saw clearly: God had planned this all along.

Because we were content with how well things were going, we weren’t going to initiate medication changes. However, God knew that Alex no longer needed this medication at night and put us in a situation where we feared that we wouldn’t be able to get more. Despite our fears that the change would be hard on Alex (and by association, us, too), he has dealt with the medication reduction beautifully, even in a situation that could have upset him. Once again, we were reminded that God knows what Alex needs better than we do, and we simply need to trust Him, pray for guidance, and be willing to embrace changes instead of fearing them. Tomorrow, as we celebrate the birth of God’s son, I pray that my faith will be more childlike––like my son’s––as I wait with anticipation, trying to be fearless and accepting changes, knowing that God’s plans for Alex’s life are better than anything I can imagine.

“They were terrified, but the angel reassured them. ‘Don’t be afraid!’ he said. ‘I bring you good news that will bring great joy to all people. The Savior––yes, the Messiah, the Lord––has been born today in Bethlehem, the city of David!’” Luke 2:9-12

Held Up

 

The month of June hasn’t turned out as I’d planned. After over a year of not dealing with thrush, poor Alex has had one of the worst bouts he has ever had. Not only does the fungal infection make his mouth and throat sore, but the illness also causes him to develop terrible dandruff and acne. Besides the physical effects, the yeast overgrowth brings on brain fog that makes him less mentally sharp, especially when it comes to verbalizing what he wants to say. On top of that, we discovered that his lithium medication levels were too high, causing an increase of tremors that make using his hands extremely difficult. Since he had been doing quite well for many months, I was eagerly anticipating summer so that we could relax and enjoy activities together as a family. Instead, we have held up on doing things until Alex feels better.

Rather than going to restaurants, one of Alex’s favorite things to do, we have been literally spoon feeding him applesauce, coconut milk yogurt, eggs, and baby food. Our blender has been put to good use making fruit smoothies and rice milk ice cream shakes that soothe his throat and fill his tummy. Because he has lost some weight on his already slim frame, we have had to encourage him to eat every meal and nutritious snacks to ensure that he doesn’t become too thin. Even though he doesn’t feel good, he has been a trouper about eating what appeals and even trying to eat the foods he normally enjoys that apparently doesn’t taste good right now, a side effect of the thrush.

At the end of May, we took him to his family doctor because we were concerned about his decreased appetite, weight loss, and suspicion that thrush was behind his symptoms. His doctor gave us a prescription for seven days of the antifungal Diflucan to treat thrush and wanted us to return in a few weeks after he returned from vacation. He also expressed concern about the lithium level shown on a recent test, which we assured him we would discuss with the psychiatric nurse practitioner who prescribes Alex’s medications for anxiety.

After valiant attempts to contact the nurse practitioner by phone and email yielded no response, despite my insistence with her staff that we needed guidance regarding the lithium medication, we prayed and decided that we needed to do something to prevent lithium toxicity. With Alex’s doctor out of town and his nurse practitioner not communicating with us and unable to see him until the fall, we lowered his lithium dosage on our own. Thankfully, we saw no negative side effects, and his tremors seemed to decrease a bit with the medication reduction. While we were concerned about making this change without medical guidance, we believed it was the right thing to do.

This week, Alex had an appointment with his doctor, who was pleased that he had not lost any more weight and was showing signs of improvement. However, he agreed with us that the thrush is not completely gone, so he prescribed another round of Diflucan, this time for two weeks. When we explained our dilemma with the lithium dosage, he completely supported our decision, which was reassuring. In addition, he ordered a blood test to check the current lithium level that day and told us if the level was still too high, he would reduce the dosage again. We were pleased that he was taking charge and had a good plan after we felt abandoned by the nurse practitioner. Moreover, he wants to see Alex again in three months––or sooner if needed––to check his weight and overall health. Needless to say, we were happy with how well this appointment went, especially since Alex was very cooperative, feeling content and confident that we have a family doctor who genuinely cares about Alex and his health.

Later that afternoon, the doctor’s office called with the results of the lithium test (which was sooner than expected) to let us know that with the medication reduction we had made, the lithium level is now in normal range. Consequently, no further medication reductions are needed at this time. The good test results confirmed for us that we had done the right thing with God’s guidance and that Alex’s doctor is on top of things, which is important to us. While one professional had let us down, another had stepped up and made sure that Alex received proper care. Once again, God had shown us that He is always faithful and provides for our needs.

On Friday evening, we attended our first concert of the summer, a local church band playing in our downtown park plaza to raise funds and collect food for needy children in our community. Clearly feeling better than he has all summer, Alex enjoyed every minute of the concert, smiling, swaying to the music, and clapping his less shaky hands. While most of the songs were upbeat popular music, the band also played two contemporary Christian tunes. As they sang of God’s love, Alex’s expression can be best described as beatific. Sometimes I think he is closer to God than most of us, strengthened by a faith that allows him to be confident, in spite of autism, knowing that everything will be all right in the end. Watching his eyes shine and his smile spread across his face, I was reminded that, in spite of illness and autism and disappointments, God always upholds us and takes care of us, and, indeed, everything will be all right.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

Risperidone and Autism

 

Dealing with aggression in autism, especially in children who have reached adult size, proves one of the most difficult challenges for parents of these children. Currently, the FDA has only approved two drugs for irritability in autism—behavior that includes aggression, temper tantrums, and self injury––risperidone and aripiprazol, whose brand names are Risperdal and Abilify. While medication can help address many of the behaviors associated with autism, parents and doctors must also weigh the potential negative side effects against the potential benefits drug companies tout.

In her April 28, 2014, article “Risperidone use in children carries heavy risks” published online by Simons Foundation Autism Research Initiative, Emily Anthes clearly addresses the risks and benefits of the drug risperidone, which is commonly prescribed to children with autism who display aggressive behaviors. Not only is risperidone the first drug the FDA approved for use in children with autism, but it is also the most widely used drug for children with autism. Originally, risperidone was used to treat schizophrenia, and the FDA approved this use in 1993. In 2006, the FDA also approved risperidone for the treatment of irritability in children with autism ages 5-16.

In 2002, clinical trials of children with autism aged 5-17 taking risperidone showed 57% reduction in tantrums, self-injurious behaviors, and aggression. Of those who responded favorably to the medication, 70% continued to show improvements after taking it for six months. However, not all children show this positive response to risperidone, and the negative behaviors return when the medication is discontinued. Moreover, the drug does not improve many behaviors associated with autism.

Additionally, risperidone has been associated with negative side effects, including drowsiness, significant weight gain, and hormonal changes. Specifically, children taking risperidone gain an average of six pounds within eight weeks of taking the drug. This weight gain carries even more concern in that it may not be temporary. Jeremy Veenstra-VanderWeele, the medical director of the Treatment and Research Institute for Autism Spectrum Disorders at Vanderbilt University in Nashville, Tennessee, notes, “You may change the body shape or body fat distribution in a child for the rest of their life.” This weight gain may also lead to other more serious metabolic issues.

A less common side effect, tardive dyskinesia, which manifests as involuntary repetitive movements, such as facial grimaces, tongue thrusting, and finger movements, has also been associated with risperidone. If the drug is stopped early enough, these movements may cease. However, even if the drug causing the movement is discontinued, the tardive dyskinesia may become worse and may be permanent.

Along with problems associated with weight gain, risperidone can cause hormonal issues in children taking the drug because it increases prolactin levels. Secreted by the pituitary gland, prolactin, if increased, can cause sexual dysfunction, lactation in girls, and gynecomastia, or swelling of breast tissue, in males. In fact, in Feburary 2015, a Philadelphia jury awarded a twenty-year-old man with autism $2.5 million after he developed size 46DD breasts as a side effect from taking risperidone from 2002-2006.

By the end of 2013, 500 plaintiffs had filed personal injury lawsuits against Johnson and Johnson, the parent company of Janssen Pharmaceuticals, who produces risperidone. In November of 2013, Johnson and Johnson agreed to pay $2.2 billion to resolve claims that they had improperly marketed Risperdal and two other drugs as having unproven benefits for elderly patients with dementia and children with autism.

In her article “Pharma company may have downplayed side effects of autism drug” published online August 20, 2015, by the Simons Foundation Autism Research Initiative, Jessica Wright addresses these serious side effects associated with risperidone. In a lawsuit filed against Janssen Pharmaceuticals, evidence has been presented that a 2003 study omitted data regarding the side effects of risperidone. Specifically, the study concluded that there was no link between the increased prolactin in boys and the development of gynecomastia.

This 2003 study of 700 children taking risperidone used data to show that prolactin increased the first two months on risperidone but returned to normal levels after five months on the drug. However, an earlier manuscript of this research has been found that includes two data tables that were not included in the published version of the research. This conveniently excluded data that shows a correlation between increased prolactin and side effects was never provided to the FDA for obvious reasons. This failure to disclose known serious side effects not only suggests deceit on the part of the drug company, but revealing this information also makes them open to scrutiny and lawsuits by those damaged by the drug.

On a personal level, when Alex first exhibited aggressive behaviors in his teens, two doctors recommended that he take risperidone. However, I had done enough research to know the potential side effects and decided that the benefits were not worth the risks. For one thing, he was difficult enough to manage, and adding more weight to him would make him even harder to handle during a meltdown. Moreover, my mother’s instinct made me very leery about the issue of tardive dyskinesia and the potential permanent damage the drug could do in that respect. Therefore, I tore up the prescription one doctor gave us for risperidone and politely asked for a different medication from the other doctor, who understood my concerns and complied with my request.

When Alex was hospitalized for extreme anxiety and aggression, he was given one dose of risperidone, probably because it is the drug of choice in treating aggression in autism. However, one of the nurses told me that after just that one dose, he began to exhibit concerning side effects that appeared to be tardive dyskinesia, so they stopped the drug immediately. Thankfully, he was under the observation of trained medical professionals who recognized this serious side effect and knew that he should never take risperidone again. My mother’s instinct, which I believe is God guiding me, was correct about risperidone’s potential negative effect upon Alex, and fortunately, he did not suffer any obvious permanent damage from that single dose.

Certainly, medications can effectively treat symptoms associated with autism. For our family, the right medications have helped Alex tremendously and have significantly improved our lives as they have eased Alex’s anxiety and aggression. However, parents must do their own research on medications and never trust doctors and drug companies blindly. Doctors may not know all the side effects of psychiatric medications, and drug companies may omit crucial data to increase their profits. Moreover, more research needs to be done regarding developing medications that may better address negative behaviors in autism and have fewer serious side effects. As parents we must help our children cope effectively with a world that overwhelms them, and we must find methods that, indeed, follow the guiding principle: “First, do no harm.”

“Is there no medicine in Gilead? Is there no physician there? Why is there no healing for the wounds of my people?” Jeremiah 8:22

The Return of Good Year Alex

 

When I started writing One Autism Mom’s Notes over three years ago in June 2010, Alex had reached a stage where he was the best he had ever been cognitively, socially, and behaviorally. After years of various interventions, including speech, occupational, and biomedical therapies, he had made significant gains that made our lives the most normal they had been in years. For example, we could take him to restaurants and shopping and do many things as a family that we couldn’t do previously due to his unpredictable behavior. These improvements meant even more to us because we had gone through a very challenging stage a little over a year before that in which he would have aggressive and destructive meltdowns that would arise suddenly for seemingly meaningless reasons. After months of walking on eggshells around him, we were delighted to welcome the return of our sweet and docile son and felt blessed that he was so much better.

In fact, one of the reasons I started writing this blog was that not only did I have more time to write about our family’s life with autism because I didn’t have to constantly monitor Alex, but also I wanted to share hope with other families to let them know that life with a child who has autism does get better. We savored this time, knowing how far we had come, celebrating Alex’s finally mastering skills other parents may take for granted, such as learning how to speak and becoming toilet trained. After months of the halcyon phase, which we later referred to as “Good Year Alex,” we were disappointed to see a decline in Alex as he became lethargic and lacked the energy and enthusiasm to do much of anything other than lie on the couch. Worried that he was ill, we took him to the doctor, who ran tests and couldn’t really find anything wrong with him physically but suggested some nutritional supplements to boost his energy.

In a few months, Alex went from being drowsy all the time to being anxious and agitated, and we saw the return of the aggressive and destructive meltdowns we had seen a few years prior. However, these meltdowns were even more frightening because Alex was bigger and stronger, and the episodes were more intense. Once again, the doctor didn’t seem to have any real answers, and eventually we were led to hospitalize Alex for several weeks to have him placed on medications that lessened his anxiety and aggression. While we hated that Alex needed to take medicine that dulled his senses, we had to address his extreme anxiety and make certain that he couldn’t hurt anyone during his intense rages.

After more than a year, Alex has gradually made improvements with a few setbacks along the way, namely dealing with chronic yeast infections of his mouth that make him irritable. Over time, he has adjusted to his medications that now keep him calm but no longer make him as sleepy and dull-witted. This summer we have enjoyed taking him places, such as parks, the beach, and concerts—typical family activities that we were unable to do for many months because of his behavior. In addition, he has rediscovered the enjoyment of reading and watching television, two activities that he basically abandoned for a year, perhaps because he couldn’t focus enough to enjoy them.

In the past few weeks, we have noticed that Alex’s language has improved significantly as he not only speaks more often (At one point during the downward spiral, he barely spoke at all.), but he also speaks in complete sentences, asking appropriate questions and making insightful comments. In fact, his speech is probably the best it has ever been. In addition, he seems to have regained access to his phenomenal memory, telling us about things he remembers from years ago and sharing trivia that he has read. Also, his receptive language and attention span have clearly improved because he answers our questions right away instead of looking at us blankly or ignoring us.

While we are obviously pleased that his behavior and speech have made huge gains, the best sign of progress has been seeing Alex regain his joy. After watching him go through months of being upset or appearing to have no emotion, we are relieved and overjoyed to see him happy nearly all of the time, smiling, laughing, and enjoying life. Like all parents, we just want our child to be happy and healthy (or as Ed and Alex have decided, the three H’s: happy, healthy, and handsome), and we thank God that He has restored both of these in Alex, which in turn, makes us truly happy. Because of the trials we have been through, we know how precious the improvements are, and we are thankful for God’s intervention and for the people He has sent to help make Alex better. For a time, we mourned the loss of Good Year Alex, and now we welcome his return, maybe even seeing a more improved Better Year Alex. As we celebrate the progress, we also maintain hope for the future, knowing that with God, all things are possible.

“And after you have suffered a little while, the God of all grace, who has called you to His eternal glory in Christ, will Himself restore, confirm, strengthen, and establish you.” I Peter 5:10

Autism and Medications

After the tragic killings in December at Sandy Hook Elementary School, the media speculated upon the possibility that shooter Adam Lanza had an autism spectrum disorder as well as reporting what medications he might have been taking. While the autism community quickly reacted by issuing statements adamantly denying a link between autism and planned violence, some discussion arose linking medications to violent behavior. Some parents who strongly oppose medicating their children with autism circulated information that cited several instances where school shooters had been taking psychiatric medications. A writer and autism mom whom I respect and admire, Teresa Conrick, posted an article on the Age of Autism website entitled “Pharmagunddon: School Shooters and Psych Meds” detailing various instances in which school shooters were allegedly taking psychiatric medications at the time they committed their heinous crimes. [To read this article, click here.] While I appreciate the thoroughness of her research and her invitation for the reader to “be the judge,” I have trouble agreeing with the implication that the medication caused the violent behaviors.

In a college course dealing with statistics, I learned the adage, “Correlation does not imply causation.” While these individuals may have been taking psychiatric medications, the behaviors that led doctors to prescribe these drugs more likely impacted the individuals to a greater extent than the medications themselves. Perhaps the medications they were taking were not the best for treating their conditions, or they may have needed different dosages than they were taking at the time.  In addition, some medications such as SSRI’s must be taken for a few weeks before symptoms improve, which could be a factor. Moreover, they may not have been compliant about taking the medications as directed, rendering them useless.  Too many variables exist to make judgments as to whether these drugs made people more susceptible to engaging in violent behavior.

Although I understand parents’ reluctance to put their children on medication, in some cases medication may be necessary for the well being of the children. If a child has diabetes and needs insulin, the parents would be negligent not to make certain the child received that medication.  In autism, co-morbid conditions, such as obsessive-compulsive disorder or anxiety, may benefit from medications that help the brain and the rest of the nervous system function better.  While I understand that some parents prefer to try vitamins, supplements, and other less drastic interventions, sometimes more is needed to address problem behaviors. I’ve noticed that some of the most vocal parent critics are those whose children are still young; until the child has gone through adolescent hormonal changes that can greatly impact behavior, from our experience, I would advise waiting to rule out medications completely.

From the time Alex was diagnosed with autism at four years of age, we began using biomedical treatments to help improve his various neurological issues. He became quite adept at swallowing pills at an early age, and he took as many as four dozen supplement pills each day, under the direction of our family doctor who specialized in nutrition. From vitamins to minerals to amino acids to essential fatty acids, Alex took whatever he needed to make his body work better. In addition, we put him on a strict gluten-free and casein-free diet that he maintains even today to address his food sensitivities and allergies. We treated him for yeast overgrowth in his digestive system, and we did chelation therapy to rid his body of toxins that had accumulated. Whatever interventions he needed, we pursued in hopes of making him as healthy as he could be, and we hoped to avoid putting him on medications. However, when his OCD behaviors became quite upsetting to him at age eleven, his doctor felt he would benefit from taking the SSRI Prozac. The improvements in his anxiety and behavior, such as frantically checking clocks to see what time it was and slamming doors in a ritual before bath time, came as a great relief to him and to us. Clearly, he needed his serotonin levels regulated in order to function better and stay calm.

Last year, when we had to hospitalize him in the behavioral medicine department for severe anxiety and aggression, his psychiatric nurse practitioner believed that after nine years, Prozac no longer worked for Alex. During his hospital stay, she tried a variety of medications at various doses until finally reaching a combination that kept him calm and prevented him from the dangerous aggressive meltdowns we had been facing for months. Currently, he takes the SSRI Zoloft along with mood stabilizers, an anti-psychotic drug, and sedatives. While we must monitor his behavior and watch for side effects as well as have regular blood tests to check his levels, we are pleased with the significant improvements we have seen while he has been on these medications.  (Fortunately, he is not taking any of  “The Top Ten Legal Drugs Linked to Violence” listed in Teresa Conrick’s article.)

Do we worry about the long-term effects of these medicines on his system? Certainly! Would we prefer that he not have to be on medications and deal with some mild side effects? Absolutely! Are we hopeful that he will eventually be able to wean off these medications and go back to taking supplements instead? Of course! However, at this point with Alex’s current issues, medication has taken away the behaviors that made him a danger to others and allowed the three of us to live peacefully.  Until God heals Alex—and I know He can—we are thankful for the expertise of Alex's psychiatric nurse practitioner and for the medications that help him overcome extreme anxiety so that he can be his happy, docile self.

“But for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture.” Malachi 4:2

Alex's Questions

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As I explained in my last two blog entries, “Telephone Tracking” and “Telephone Tracking Two,” I’ve been spending time on the phone lately, trying to find information regarding Alex’s blood tests to monitor recent medication changes and his Medicaid benefits. Fortunately, my tenacity paid off, as we received a letter from Medicaid this week stating that Alex still qualified and would continue receiving his disability benefits. This came as a huge relief that his file had been updated correctly. Also, I called his psychiatric nurse practitioner’s office this week to get the results of his blood tests, only to discover that they had never received the test results. Then, I had to call the lab to request his results be faxed (or faxed again, as I’m not sure what had happened) to the nurse practitioner’s office. Once they received the results, her nurse called to tell me that the results were normal and that he should continue on the current medication dosages. Again, this news was a blessing because he is responding well to the slight increases in medication, and we were thankful that his blood tests indicate no problems with these changes. Although I would have preferred that gaining information about his benefits and health had not required so many phone calls, I’m pleased that in the end, the news was good.

While I’ve been on the phone acting as Alex’s personal assistant, he’s been busily coming up with questions for me to answer. When he first came home from the hospital this summer, he seemed to be in a mental fog, his senses dulled by the medications needed to keep him calm. Over the past several months, he’s gradually emerged from this drowsy state, and we’ve been pleased to see his personality and curiosity return. In fact, when he was little, Ed used to call Alex “Mr. Curious” because he was always checking out things and asking questions about them. We enjoy his inquiries because not only do they show he’s alert and aware, but they also give us a glimpse into how his mind works.

One area of his questioning has to do with the past. He has an interest in things that happened before he was born or things he can’t remember because he was too little. As I’ve explained in previous blog entries, Alex qualifies everything by numbers, so calendars and clocks and dates are very important to him. The past few weeks, he’s been asking about when various businesses in town opened. Specifically, our town has a new hospital that opened in August, and Alex wanted to know more about the old hospital it replaced, especially since he was born in the old hospital. Fortunately, I was able to find some information online about the old hospital and when it opened, which was exactly what Alex wanted to know. In addition, he has had a recent fascination with the part-time job I had while I was in college as a waitress at the Big Wheel Restaurant. Not only did he want to know the exact dates when I started and stopped working there, but one day he also wanted me to tell him everything that was on the menu. This seems to be another nostalgic exercise for him because although the Big Wheel closed a few years ago, Alex remembers going there when he was younger. To enhance his trip down Memory Lane, he has been asking me to fix one of the special dishes from the Big Wheel, the Wheel Steak.  Perhaps eating a familiar dish from the restaurant jogs his memory so that he can remember the times he spent at the Big Wheel. Now I need to teach him about leaving a tip for the waitress.

Besides reminiscing, Alex has also been spending a lot of time thinking about theological concepts, but, of course, they reflect his unique perspective. Lately, he has a great deal of curiosity about what God can do, where heaven is, what it will be like, and what we will be like when we get there. Although I have no good answers to his good questions, he has been satisfied when I have told him that only God knows or that he’ll have to wait and see when he gets to heaven.  Since I’ve been intrigued by some of the questions he’s posed, I’ve been jotting them down whenever he asks them. Here are some of Alex’s recent inquiries:

“Has God used the graphing calculator before?”

“Does God know all the pi digits?”

“Where are heaven and hell?”

“What is the address for hell?”

“How long does it take to get to heaven?”

“Can you call heaven? What’s the phone number?”

“Is there a Heaven.com?”

“What road goes to heaven?”

“Are there clocks in heaven? Will there be time in heaven? Do they have stopwatches in heaven? Do they have timers in heaven?”

“How much will we weigh in heaven?”

“What will our heavenly bodies look like?” (after I told him we’d have new bodies in heaven in response to his question about weight in heaven)

“Will you have birthmarks in heaven?”

“What color will your eyes be in heaven?”

“What voice will you have when you get to heaven?”

“Can you sleep when you get to heaven?”

“Will people have tempers in heaven?”

Besides all of his interesting questions about God and heaven, Alex has also asked some things that make me wonder how his mind works. One day, he suddenly asked, “Do dogs have better memories than cats?” Even more puzzling was the day he apparently wanted to try parenting and asked, “Can you [meaning “I”—he still reverses pronouns] pretend to have a baby?” As he has been more alert, he’s paying more attention to what people are saying in person or on television, which has made him ask about words he doesn’t know. For instance, while watching the television show The Big Bang Theory the other day, he heard one of the characters use the word befuddled and asked us what that meant.  I was tempted to tell him that I was befuddled when he asked about pretending to have a baby, but decided against that. Finally, another question he’s frequently been asking me lately is when I’m going to retire. I’m not sure if he thinks I’m old, or if he’s just looking forward to my being home all the time.  I guess he figures that if I retire, that will free my time to make phone calls on his behalf and answer all his questions about life. In the meantime, I’ll keep working at the balancing act of my part-time teaching job and my full-time job of being Alex’s advocate, teacher, and mom, which is my favorite job of all, especially when he entertains me by asking questions that make me think about all the good things we have ahead when we actually know what heaven will be like.

 “Call to me and I will answer you and tell you great and unsearchable things you do not know.” Jeremiah 33:3

Telephone Tracking

In a blog entry from April 2011 entitled “Survivor,” [To read this entry, click here.] I described my love of reality competition television shows, such as The Amazing Race, Dancing with the Stars, and The Apprentice, and I suggested a challenging season for a perennial favorite—Survivor: Autism. For this season, contestants would have to complete tasks autism parents regularly face, such as fighting insurance companies for benefits and searching for the best therapies and interventions to help their children, as well as patiently dealing with their children’s unusual behaviors, including watching videos repeatedly. This week, I realized that one more challenge could be added to my proposed reality show: "Telephone Tracking," in which contestants armed only with a phone try to get needed information as quickly as possibly without losing their tempers or their sanity.

One of these tasks would involve tracking down medically related information. About a week ago, I called Alex’s psychiatric nurse practitioner’s office with concerns that he was jittery upon awakening, like someone who had drunk too much coffee. He would physically shake and tell us that he was “nervous.” As with many medical offices, to speak with a human, I had to listen first to the recording that warns the caller, “If this is a medical emergency, please hang up and dial 911” before I could speak with one of the nurses. After explaining Alex’s condition, the nurse relayed the message to the nurse practitioner, and the nurse called me back promptly, which I appreciated. Thinking that Alex’s bedtime medications were not carrying him through the night until his morning medications became effective, his nurse practitioner decided to increase slightly two of his bedtime medication dosages. This change made complete sense to me, and I was glad she was willing to make this adaptation without needing to see Alex first. To monitor the effects to these slight modifications, she also wanted him to have a blood test after one week to check the levels of these two drugs to make sure they were within proper ranges. I asked the nurse to send lab orders to the lab where we have taken Alex the past several months to have blood draws, and she told me she would take care of this.

Because my goal is to keep things always moving smoothly for Alex, I decided to call the lab a few days ahead of the blood draw to make certain that they had received the orders from the nurse practitioner’s office. This lab test requires fasting, which meant that we would be taking Alex as soon as he awakened and before he took any of his morning medications and before he’d had anything to eat. I didn’t want us to get to the lab and have any paperwork confusion while we were also dealing with a hungry kid in need of his medications. When I called the lab, they checked through the records and did not have orders for a lab test for Alex, so I had to call his nurse practitioner’s office again, this time armed with the phone number of the lab. The nurse told me she would check his file and call me back. Once again, she returned my call quickly and informed me that they had sent the orders to the wrong lab. I asked her to send them to our chosen lab, and she assured me that she would do so. After waiting a few hours, I once again called the lab to see if they’d received the orders, and they told me that the nurse practitioner’s office had faxed them that afternoon.  So, after four phone calls, we seemed to have everything straightened out for Alex’s blood tests.

On Wednesday morning, we waited for Alex to awaken so that we could take him immediately to the Chesterton Health and Emergency Center for his lab work. Once we arrived, we were pleased to see that we were the only ones in the waiting room, and Alex happily watched the big screen television with Ed as I completed the necessary paperwork with the registration clerk. As she was typing in the information, she asked me, “Is his doctor’s office open right now?” This made my stomach turn, as I suspected some crucial piece of information was missing. I told her that I knew his nurse practitioner was likely at the hospital doing her rounds in the morning rather than being at her office. Then I asked why she needed to call, and she said that the office had failed to provide a diagnosis code for the testing, which insurance would need. Immediately, I told her that his diagnosis is autism, which is code number 299.0. She still seemed a bit hesitant, and I more assertively told her that every test we had done there had been under the 299.0 diagnosis. Apparently, I was convincing because she went ahead and completed the registration process without calling the doctor’s office.

After that, the lab technician called us back to do Alex’s blood draw, and he, as he always does with lab tests, handled the procedure amazingly well, calmly sitting still the entire time. Moreover, he didn’t even flinch when the needle went in his vein. The lab technician was efficient and pleasant, and we were relieved to have that task behind us. One surprise in all this, however, was that they told us his nurse practitioner wanted the test repeated in a week, which her nurses had not conveyed to us in the four phone calls I had with two of them.  And so, we will do this again later this week, and hopefully Alex will be just as cooperative as he was last week.  On a positive note, the change in medication seems to be helping Alex in the morning, so the efforts I’ve made through the various phone calls have been worth my time. Also, the lab has the orders for the upcoming test, so I won’t need to make phone calls regarding that. However, I’m betting that I will have to call the nurse practitioner’s office to get the test results. It’s a good thing my telephone communication skills are polished so that I can track down the information I need to help Alex. I realized this again later this week when I received a letter from Medicaid stating that Alex’s benefits would be discontinued because of my alleged “failure” to send them financial records they needed. This put my phone skills and patience to the test once again, but that’s a story for next week’s blog. To be continued…

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened.” Matthew 7:7-8

The Tragedy of Sandy Hook

Since the December 14^th senseless tragedy at Sandy Hook Elementary School in Connecticut, where twenty young children and six staff members were killed, people have been trying to come to terms with why and how something this terrible could happen.  Debates over the need for stricter gun control laws, along with plans for increased security measures in schools, as well as discussions of how to address mental illness have filled the media. However, rational minds simply cannot grasp the irrationality of such a horrific act.

In trying to explain the motive behind the actions of killer Adam Lanza, someone who knew his family explained that he had been diagnosed with Asperger’s syndrome, an autism spectrum disorder. This information immediately sent the autism community scrambling to distance autism from the dangerous and deadly behavior exhibited by Adam Lanza. Major autism organizations issued statements to declare that autism would not drive a person to commit such heinous crimes. Specifically, the National Autism Association posted on its website: “There is no link between planned violence and Autism Spectrum Disorders.” Similarly, the Autism Society of America addressed concerns, stating, “No evidence exists to link autism and premeditated violence. Many of individuals with Asperger’s syndrome who have committed crimes had co-existing psychiatric disorders. Individuals with autism who act aggressively typically do so because they are reacting to a situation.” 

If, indeed, Adam Lanza had Asperger’s syndrome, he likely also had another psychiatric disorder, as suggested by the statement from the Autism Society of America. Common comorbid conditions associated with autism include obsessive-compulsive disorder, bipolar disorder, depression, and general anxiety disorder.  In fact, one study reported that nearly 84 percent of individuals with autism spectrum disorder also met the criteria for diagnosis with an anxiety disorder. While autism alone presents many obstacles, the additional conditions create more problems that require intervention. Unfortunately, help is not always readily available.

Last week, a friend sent me a link to the online article “I Am Adam Lanza’s Mother” [To read this article, click here.] and wanted to know my opinion regarding this controversial essay.  In telling about her 13-year-old son and his extremely challenging and frankly frightening behaviors, Liza Long candidly declares that her son has the potential to be as dangerous as Adam Lanza. In the essay, she admits, “I live with a son who is mentally ill. I love my son. But he terrifies me.” Despite all her best efforts, she has struggled mightily to get him the help he needs, but she has found few and limited mental health resources available.  

Although Alex’s behavior was never as extreme as Liza Long’s son, I could sympathize with her frustration and fears.  As I have explained in previous blog entries, when Alex was fifteen years old, he began exhibiting aggressive behaviors that were completely out of character for our docile, gentle son. After having to wait six weeks to get an appointment with a child psychiatrist, who offered no real help and admitted that I knew more about autism than he did, we realized how little help is available. Thankfully, Alex’s doctor gave us a prescription for the sedative Ativan, which we could give him when he was having meltdowns to help calm his anxiety and curb his aggression so that Ed and I could physically manage him. Once he outgrew that phase, which was likely tied to hormonal changes of adolescence, we thought we would no longer have to worry about medicating him to keep everyone safe. We were wrong.

About a year ago, we again began seeing aggressive behaviors linked to anxiety in Alex (as I have also detailed in previous blog entries). Not only were these outbursts more intense than they were five years earlier, but the increase in Alex’s size and strength as a six-foot-tall young man made these meltdowns dangerous. As we desperately sought help for him, we kept running into dead ends. The waiting list to see a psychiatrist was nearly two months, and two trips to the local ER showed that they could only sedate him and send us home with more Ativan.  We had to make three calls over a three-month period to the police to help us safely control him when his aggression became so intense we could not restrain him ourselves. When we finally pushed for our local mental health facility to admit him as an inpatient, they told us that they would only admit him if he were homicidal, suicidal, or psychotic. Eventually, after asking many questions, we discovered that they would not admit him at all because he has autism, which they consider a developmental disorder instead of a mental disorder. No one seemed to know how to help Alex, and fortunately, my intensive Internet research led us to St. Anthony Memorial Hospital in Michigan City, whose Behavioral Medicine Department admitted him as an inpatient and provided him with the care he desperately needed.

While Alex was being treated in the hospital, we kept questioning the staff as to whether he had some co-morbid condition that was causing the behaviors that were so different from his typical self. The psychiatric nurse practitioner who has overseen his medication since he was hospitalized and who has considerable experience treating adults with autism explained to us that aggression is quite common in young men with autism. She diagnosed him as having autism with aggression and impulse control issues and felt certain that he did not have bipolar disorder or another coexisting condition. After weeks of trying various medications in various combinations and dosages, she finally found a therapeutic mix that keeps Alex calm so that we can manage him at home without fear. As we have been working to find services for Alex, some of the caseworkers who have read through Alex’s list of medications have commented about how many psychiatric medications he is taking, almost in a critical way. Although we wish that Alex didn’t have to be on any medications, until his potential for aggressive behavior subsides, we must keep him on this regimen so that he does not become a danger to himself or others. This is an unfortunate reality of our situation, but we are thankful that medications make him able to function, especially since Ed and I are responsible for his complete care. In thinking about Liza Long’s situation and wondering about what Adam Lanza’s mother faced with her son, I feel frustrated that finding help for children and adults with severe behavioral issues is so difficult for parents. Perhaps if interventions were more readily available, tragedies like Sandy Hook could be prevented.

In reading the profiles of the Sandy Hook Elementary students who lost their lives, I was saddened and surprised to find that two of the twenty children killed had autism. Through statements provided by their parents, Josephine “Joey” Gay was described as having nonverbal autism, and Dylan Hockley, who died in the arms of his teacher Anne Marie Murphy, also had autism. The vulnerability of these two children is heartbreaking, and the prevalence of autism, as evidenced that two of the twenty children were victims of this condition as well as victims of the action by a killer who perhaps had autism himself with coexisting mental illness, is also deeply concerning.

Certainly, Adam Lanza’s mother should not have kept guns in her home. Certainly, Adam Lanza needed help. Certainly, schools need to make security a priority. However, from our experience, the key issue that needs to be addressed is making help for children with autism and mental illness a priority so that parents can readily access resources instead of constantly seeking and fighting for them. Ignoring these problems will not make them go away, and the consequences for society could very well be—as we’ve unfortunately seen—terribly tragic.

“Do not stay so far from me, for trouble is near, and no one else can help me.” Psalm 22:11

Fighting for Our Children

This week, the U.S. House Oversight and Government Reform Committee held meetings in which members of Congress questioned representatives from the National Institutes of Health and the Centers for Disease Control as well as autism advocates regarding the recent significant increase in autism. Fifty years ago, the U.S. autism rate was 1 in 10, 000 children; under the current epidemic, 1 in 88 children in the U.S. has autism. A controversial topic discussed was the potential role of vaccines, which the NIH and CDC insist has no link to the increase in autism rates. However, their research studies that often focus upon genetics have not proven helpful in dealing with the rise in autism or in helping those already diagnosed with autism.

                                                                                                                               

By contrast, autism advocates emphasized the need for environmental research, treatment, and services, especially for adults with autism, who have limited resources currently available to them. During the hearings, the need for parental input, which is often ignored by scientists, was emphasized since parents have direct experience with autism. Rep. Paul Gosar of Arizona commented on the valuable knowledge parents of children with autism have, stating, “We should be focusing on the family. They’re telling you what’s going on.”

In watching video clips from the hearings on C-SPAN’s website, I was impressed with many of the members of Congress who showed great compassion for the families touched by autism and frustration with the government agencies who are failing to serve these children. Despite the millions of dollars spent on research, a definitive cause for autism appears to be nowhere in sight, and they appear to be no closer to discovering a cure. Furthermore, services for children and adults with autism cannot keep pace with the rapid rise of newly diagnosed cases. I watched as parents and autism advocates in the audience nodded their heads in agreement as to what needs to be done to help and shake their heads or roll their eyes in frustration as representatives from the NIH and CDC failed to give any useful information. These government agencies need to know that parents of children are not going away quietly, and with dramatically increasing autism rates, there are going to be even more parents demanding answers and help for children and adults with autism.

One of these autism parent-advocates, Lorri Shealy Unumb, appeared on the stage of the NASCAR Sprint Cup Awards on Friday evening with her son Ryan, who has autism. After her son was diagnosed, she discovered that insurance companies would often not pay for services for children with autism. Using her legal expertise as an attorney, she drafted a bill for the South Carolina legislature regarding insurance reform so that children with autism would be covered. Known as “Ryan’s Law,” this bill has been enacted in 31 states to help families with autism get insurance coverage for their children’s treatment. In addition, seeing the need for appropriate education for children with autism, she established the Autism Academy of South Carolina. As a fellow autism mom, I was delighted that NASCAR recognized Lorri Shealy Unumb’s outstanding efforts to help families dealing with autism by honoring her with the Betty Jane France Humanitarian Award. 

If there is any doubt about parents’ commitment to their children with autism, one only need to observe the efforts they expend to help their children get better. This week I had the opportunity to meet three autism parents whose devotion to their children was apparent in our conversations via e-mail, phone, or Facebook. The first, Julie Tracy, had left a comment on my blog telling me about her son, who is about Alex’s age, and the nonprofit organization her family has established to help adults with autism, the Julie and Michael Tracy Family Foundation. According to their mission statement from their website, “The JULIE + MICHAEL TRACY FAMILY FOUNDATION is dedicated to improving the quality of life and independent outcomes for adults with autism, advancing psychiatric research and expanding public awareness and understanding of this rapidly expanding demographic.” In addition, they are planning a residential setting for adults with autism that will allow them to develop independence and skills needed to be successful. Through our e-mails, I learned that Julie’s son, like Alex, had to be hospitalized for psychiatric treatment, and their experience made them realize the need for appropriate services for adults with autism, leading them to develop the foundation to provide necessary supports not currently available. Her devotion not only to her son but also to others like him motivates her to accomplish a noble goal to help adults with autism who cannot help themselves.

Besides my e-mail conversations with Julie, I had a phone call from an autism dad this week who told me about his two adult sons with autism; he and his wife have dedicated themselves to making life better for these two young men. Despite all our efforts and interventions, both of our families have struggled with our sons’ aggression. He and I discussed the various medications our sons have been prescribed to help them function better. Although neither of us works in the medical field, we discussed the medications, their classifications, generic names, and side effects as though we were pharmacists.  As autism parents, we have learned to navigate the medical field, learning the lingo along the way. During our phone conversation I was impressed with his fierce devotion to his sons and his optimistic attitude about making their lives better. Also, by connecting with him and Julie Tracy, I felt comforted that other parents had been through experiences similar to those Ed and I have had with Alex.

Another autism parent connection I made this week was with an autism mom through one of my Facebook groups. After finding out that her child has sensitivities to glutens, she decided to implement the gluten-free diet and wanted suggestions as to what her child could eat on this very restrictive diet. Since Alex has been on the gluten-free diet for many years, I was able to make some suggestions about gluten-free foods and substitutions. As she and I e-mailed back and forth several times, her strong motivation to help her child was evident, and I was pleased to be able to help get her started on the gluten-free diet. Throughout this week, I have been reminded that the only way the autism tide is going to turn is through the tireless efforts of parents who will not give up until their children get the help they so desperately need. Moreover, by working together, parents can share information, insights, and support so that we can accomplish our ultimate goal: helping our children to reach their full potential.

"I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible." Matthew 17:20