Alex's Two Words About Autism

 

Recently, I read an inspiring blog entry published exactly a year ago today from one of my favorite autism mom writers, Emily Colson, the author of Dancing with Max, a memoir about her son who has autism. Not only is she a talented writer, but I also admire her strong faith in God and her ability to find humor in the midst of autism chaos. Most of all, I understand her unconditional love for Max, who, like Alex, is in his mid-twenties, but retains a childlike innocence.

In her essay, “Max’s Two Words About Autism,” she describes her enthusiasm about an upcoming appointment with a new doctor who has a daughter with autism. [To read this essay, please click here.] Sharing this information with Max, she notes, “The word autism has been a part of the conversation in our home since Max was very young.” Similarly, we have always been open with Alex about autism and how it affects him, not wanting him to think we have been keeping secrets from him. Moreover, we never want him to feel ashamed that he has autism, so we have candidly told him everything we know about the condition. Believing that knowledge is power, we have wanted Alex to gain power over a condition that has hindered his speech, fine motor skills, and social interactions.

Wondering what Max would say about autism, Emily Colson explains, “Thoughts of this journey and the bittersweet sound of the word swirled in my mind. None of this has been easy, yet God has made it beautiful. Autism has been the fertile ground in which God has grown my faith.” Brilliantly, she has described the duality of life with autism: the struggles and the triumphs. I know that the challenges of raising a child with autism has taught me greater patience and compassion and developed a stronger faith in God than I would have had without those challenges.

When Emily Colson asks her son to describe autism in two words, he tells her, “Love. Peace.” Clearly, he has found the good, despite the struggles of autism. Curious as to what Alex’s impressions of autism are, I asked him the same question Max was asked, “Can you tell me two things you want someone to know about autism?”

To be honest, I thought that Alex would respond with the phrase he uses when either he doesn’t have an answer or doesn’t want to give an answer: “What would be good?” However, I knew that if I wanted his honest opinion, I would need to force myself not to lead him with my own editorial comments. To my surprise, he immediately answered, “Mercury. Anxiety.”

While Max’s answers were more heartwarming, Alex’s answers were candid and revealed his understanding of what he has faced. He knows that he was diagnosed with mercury poisoning when he was younger, probably the result of the preservative thimerosal in the vaccines he received as an infant and young child. Moreover, he remembers being treated for the accumulation of this neurotoxin through chelation therapy for three years and perhaps even remembers our joy as each subsequent test revealed his levels of mercury decreasing. In addition, he knows that he cannot have shots that contain thimerosal, such as flu shots, and he must have composite instead of mercury-containing amalgam fillings in his teeth. Just as he knows to avoid glutens and dairy products because he has sensitivities, he realizes that mercury is harmful to him, too, and must be avoided.

In addition, Alex recognizes how anxiety affects his mental, emotional, and physical states. He realizes that at this point in his life, medication helps keep him calm so that anxiety does not escalate to levels that overwhelm him. Also, behavioral therapy and music therapy the past few years have taught him coping skills so that he can take control of his emotions and deal with situations he finds difficult. Most of the time, he copes very well. However, anxiety will still arise at times, and we find ways to help him deal with it constructively. For example, this morning, his world was rocked by the time change. Even though he has known for weeks about the switch from Daylight Savings Time back to Standard Time, the fact that his beloved clocks were wrong made him nervous. Until we changed the clocks with him this morning, he struggled to control his nerves, which gave him away by the adrenaline rush that made his hands and voice shaky. Although he deals with anxiety better now than he did in the past, this aspect of autism still plagues him daily.

While I would take away all of the struggles Alex has had to face through the years in a heartbeat if I could, I believe that he is also a better and stronger person because of what he has faced in life. As I watch him tenaciously and patiently work at tasks most people would abandon in frustration, I am thankful that God has equipped Alex with what he needs to overcome the challenges autism presents. Every night as I listen to Alex’s earnest prayers and requests to bless other people, I am grateful that God has given him a pure heart and strong faith that allows him to believe everything will be all right. As the scriptures describe, God has given us “beauty for ashes,” and we feel blessed that Alex has overcome many obstacles so that he can enjoy life to the fullest.

“...He will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair.” Isaiah 61:3

Forgoing Flu Shots

 

This fall, the urgency to get a flu shot seems greater than any other year in recent memory. Television and magazine ads stress not only how the shots protect against illness, but also how a new version offers a smaller needle, personified by a talking hedgehog who gets a haircut to show just how small that needle is. Besides doctors’ offices and health care facilities, pharmacies, discount stores, and grocery stores offer convenient opportunities for patients/shoppers to get vaccinated. Nearly every time I use the automated phone service to refill our prescriptions, I must listen to the pharmacy’s ad recommending that people get a flu shot now, followed by the times these shots are available at their stores.  

In dealing with Alex’s persistent case of thrush and cheilitis, or yeast overgrowth in and around his mouth, we have taken him to five different doctors or nurse practitioners in the past few months. In addition, he has had blood tests three times. Almost every time we have taken him for medical treatment or testing, we have been asked if he has had a flu shot this season. When we have said no, the health care provider has asked us if we would like for her to give him a shot, and every time we have said no. I then quickly and vaguely explain that he doesn’t do well with the preservative in flu shots, which usually ends the discussion. At his family doctor, I had to sign a form that we refused the flu shot and provide a reason in writing. Despite my desire to teach the staff with a more detailed explanation as to why flu shots are not a good idea for Alex, I simply wrote that he has adverse reactions to preservatives found in flu shots.

When I was younger, I was a proponent of flu shots. As a middle school teacher, I’m constantly exposed to various illnesses from my contact with students who may come to school ill or carrying germs prior to showing symptoms of illness. In addition, my internist recommended that I receive a flu shot annually because of the effect viruses can have on my chronic autoimmune condition, idiopathic thrombocytopenia. Basically, a virus can send my immune system into overdrive, causing my spleen to destroy healthy blood platelets, which are necessary for blood clotting. Since I already tend to have a low platelet count, the effects of a virus can potentially put me at risk for bleeding. Following my doctor’s advice, I would annually get vaccinated against flu. However, in those days, flu shots were not available on every corner, and I would constantly search the local newspaper every fall to see when and where flu shots would be given. One year, a limited supply of the vaccine allowed only the elderly and chronically ill to be eligible for flu vaccines, which meant that as a relatively healthy young adult, I didn’t qualify to receive a flu shot. Perhaps coincidentally or through blessings from God, that year I never became sick at all—no flu, no cold, nothing. In some years when I had gotten the flu shot, I still came down with flu, a possibility always mentioned when flu shots are given. After the year I stayed healthy despite not having a flu shot, I decided that I wouldn’t get flu shots any more, and I believe that I am healthier each winter than I was the years I received flu shots. For me, I suspect that not tampering with my body’s overly sensitive immune response enables my antibodies to react more appropriately when a virus or flu activates them.

For Alex, I have a different reason for refusing flu shots for him. When he was eleven years old, I asked his doctor if we could have him tested for heavy metals after I had read that many children with autism carry toxic loads of various heavy metals because their bodies have difficulty removing them in the detoxification process. Although she didn’t think he probably had heavy metal poisoning, she understood my concerns and agreed to run a heavy metals urine challenge test, which required that I collect his urine over several hours. When the results came back, she and we were surprised to discover that Alex had toxic levels of arsenic, lead, mercury, and aluminum. In fact, his arsenic levels were the highest she had ever seen. To remove the heavy metals, Alex had to go through chelation therapy by taking DMSA pills, a sulfur-based compound that binds with the heavy metals and removes them from the body through the urinary and digestive tracts. This process took over two years before testing showed that his heavy metals levels were in the normal range. While we don’t know the original sources of all the toxins, we suspect that thimerosal, a mercury-based preservative used in vaccinations, likely contributed to his mercury poisoning.

Even though most people in the medical community argue that thimerosal has no connection to autism, this mercury-based preservative was removed in 2001 from most vaccines children receive. However, many flu vaccines still contain thimerosal unless they are single-dose vials or syringes since thimerosal is supposed to protect multi-dose vials from contamination by bacterial or fungal growth. [I confirmed this information on the Centers for Disease Control and Prevention’s website. To go to their website on flu vaccine safety, click here.] One year when a particularly virulent strain of flu was infecting children, I asked Alex’s doctor if he should get a flu shot to protect him. She was adamant that he not receive the vaccine because of the effects of the thimerosal on him. In addition, she did not want him to have the nasal version that does not contain thimerosal because she felt the live vaccine it contains was not good for him, either. Instead, she assured me that prevention, such as washing hands and making sure he had proper nutrition and plenty of rest, would likely prevent his getting flu in the first place. If he did get the flu, she would treat him with antivirals and boost his immune system so that his body could fight the virus without the vaccine. I trusted her judgment, and Alex stayed healthy that year. Since then, I have never even considered having Alex get a flu shot, remembering her medical advice and praying God would keep him well. Thankfully, this approach has worked well, and Alex rarely gets sick. Moreover, we have limited his exposure to mercury, a known neurotoxin, which his nervous system certainly does not need.

Despite the CDC’s dire warnings of the dangers of flu, stating, “Influenza is a serious disease that can lead to hospitalization and sometimes even death,” we will not be getting flu shots this year. Even the CDC admits that the vaccine’s effectiveness depends on many factors: “How well the flu vaccine works (or its ability to prevent influenza illness) can range widely from season to season and also can vary depending on who is being vaccinated.” Certainly, I respect the decision of others to get vaccinated against the flu, but with no guarantees that that shot actually prevents flu and with the added potential dangers of thimerosal, I’m not willing to take that risk for Alex or myself. In the meantime, we follow the best advice my internist ever gave me for good health: “Plenty of rest, proper nutrition, and lots of prayer.” This sounds like a good plan to me.

“Lord, your discipline is good, for it leads to life and health. You restore my health and allow me to live!” Isaiah 38:16