Sunday, November 6, 2016

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

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