Treating Health and Well-Being in Autism

Although autism is primarily considered a developmental condition that hinders communication and social skills and causes repetitive behaviors, recent research confirms what many parents have known all along: autism also involves psychiatric and medical issues. In the article, “Psychiatric and Medical Conditions in Transition-Aged Individuals with ASD,” published April 2018 in the journal Pediatrics, researchers note that adolescents and young adults with autism deal with more psychiatric and medical conditions than typical young people. [To read this article, please click here.]

For this study, researchers used 2013-2015 data from Kaiser Permanente Northern California, which provides care to people in the San Francisco and Sacramento regions. Information regarding health care for teenagers and young adults ages 14-25 was studied with a typical control group of 20,516 individuals and 4,123 with autism spectrum disorders.

Compared to the typical individuals, psychiatric conditions were significantly more common in those with autism. In fact, 34% of those with autism also had at least one psychiatric condition. To illustrate, 15% had ADHD, 14% had anxiety, 10% had depression, and 6% had bipolar disorder.

In addition to psychiatric conditions prevalent in young people with autism, the researchers found that teenagers and young adults who have autism also dealt with various medical conditions. Specifically, 42% had infections, 25% dealt with obesity, 18% had neurological issues, 16% had allergy and/or immunology concerns, 15% had musculoskeletal conditions, and 11% had gastrointestinal problems. As the article notes, “Compared with the TC [typical control] group, individuals with ASD were at significantly increased risk for most medical conditions.”

One theory for the high rate of obesity in the autism group was the use of antipsychotic medications; one common side effect of these drugs is obesity. While 19% of the patients with autism took antipsychotic medications, even those who did not take these drugs had a higher incidence of obesity than those in the typical group. Perhaps poor dietary habits due to sensory issues, a lack of exercise, and/or metabolic problems contributed to this rate of obesity. Interestingly, those with autism were much less likely to smoke or abuse drugs than those in the typical group. The researchers suggested that uses of tobacco and drugs tend to be social activities, which people with autism may avoid.

The researchers speculated various reasons why teenagers and young adults with autism also have psychiatric and medical conditions. First, isolation from others due to impaired social skills may cause anxiety and/or depression. Also, the medications used to treat psychiatric conditions could cause or intensify medical conditions, such as obesity and gastrointestinal problems. In addition, sensory issues and difficulty interacting with others may hinder access to medical care. Moreover, medical providers may not know how to meet the needs of those with autism, causing treatment to be less successful.

While the researchers did not definitively identify why teenagers and young adults have significantly more psychiatric and medical issues, they noted that more research needs to be done in this area. They conclude, “…there is a pressing need for all clinicians to approach ASD as a chronic health condition requiring regular follow-up and routine screening and treatment of medical and psychiatric issues.”

While mainstream medicine may not know why so many children, adolescents, and young adults with autism also have psychiatric and medical conditions, practitioners of functional medicine who treat patients with autism have some good ideas as to why they have additional issues. On May 31, 2018, in a weekly live chat on the Spectum Awakening Facebook page, Dr. Jared Skowron discussed “the seven medical arenas of autism” and offered helpful suggestions for testing and treating these issues.

The first medical issue often seen in autism is autoimmunity, such as food sensitivities or PANDAS/PANS syndrome caused by strep infections. These conditions may benefit from anti-inflammatory supplements, such as fish oil. Another medical concern found in autism involves brain chemistry issues, including problems with regulating serotonin, dopamine, and/or adrenaline. Supplements such as amino acids and B vitamins may prove helpful to regulate brain chemistry.

A third medical issue common in autism involves detoxification issues, which can lead to heavy metal toxicity. Recent studies indicate that many teenagers with autism have abnormal levels of aluminum in their brains. Chelation with silica or sulfur compounds may be needed to remove these toxins from the body. Another cause of medical conditions in autism is genetic mutations; the availability of home test kits, such as 23 and Me, allows simple ways to diagnose potential genetic issues that may need to be addressed.

Perhaps one of the most common medical problems in autism is the issue of gastrointestinal dysfunction. These problems of the digestive tract can often be treated by diets that eliminate allergens and/or medications and supplements that treat yeast overgrowth, harmful bacteria, and parasites. In addition to problems with the digestive system, some people with autism have issues with the endocrine system. Specifically, adrenal and thyroid supplements may be needed to adjust hormone imbalances that impact stress levels and the immune system. Finally, mitochondrial dysfunction may accompany autism, causing severe fatigue. Various supplements, such as CoQ10, can improve cellular function issues that occur with mitochondrial disease.

Although autism primarily affects communication, social interaction, and behavior, the study of Northern California teenagers and young adults demonstrates that many young people with autism must also contend with psychiatric and medical issues. Diagnosing and treating these additional conditions may be difficult for medical personnel, due to the obstacles autism typically presents, but improving the mental and physical health of these young people is crucial to their well-being. Certainly, people with autism deserve to be as happy and healthy as possible, and those practitioners willing to seek causes and cures for accompanying ailments deserve praise for their dedication to healing.

“Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard.” Isaiah 58:8

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

Blooming

“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

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