Curing Autism

 

Last month, Autism Speaks, perhaps the best-known autism organization, revised its mission statement for the first time since it began in 2005. As Michelle Diament notes in the article “Autism Speaks No Longer Seeking Cure” in the October 14, 2016, edition of Disability Scoop, “one notable objective is no more.” [To read this online article, please click here.] Even though Autism Speaks merged with Cure Autism Now in 2007, the new mission statement eliminates the goal of curing autism.

The previous mission statement asserted: “We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.” The revised mission statement instead mentions, “advancing research into causes and better interventions for autism spectrum disorders and related conditions.” An Autism Speaks board member explains the reason for the change: “…the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum––rather than something that has to be done to.” I suspect this references the neurodiversity movement in which some adults with autism see the condition as simply a variation of brain wiring and convey resentment that autism is viewed as a disease to be cured. Sadly, most people with autism lack the language skills to be able to express how they feel, and many of them deal with debilitating conditions that exist with autism, including anxiety, seizure disorders, and digestive issues.

Whether Autism Speaks is bowing to the pressure of a small percentage of people with autism or whether they are abandoning a crucial and worthy pursuit, this organization is not using its extensive financial resources in ways that would be most beneficial to families dealing with autism. However, they are not the only ones failing to use their funding wisely. The National Institutes of Health, an American government agency that oversees billions of dollars for medical research, wastes money every year on autism research that is essentially worthless.

In her Age of Autism October 13, 2016, article “2015 NIH Autism Grants­––Why We Are Making NO Progress,” Katie Wright provides extensive data regarding how the National Institutes of Health allocate autism research funding. [To read this article, please click here.] Ironically, Katie Wright’s parents started Autism Speaks when her son was diagnosed with autism. However, she has been critical of the organization and its focus on genetic research instead of environmental research.

In this article, she notes that despite nearly $200 million dollars spent annually by the NIH on autism research, after nearly a decade, no real progress has been made in finding a cause. Of this amount, the primary research money is spent on genetics and brain imaging studies with only a fraction of research funding––$8 million––being spent on environmental studies with regard to autism. Additionally, she notes that twenty percent of these environmental studies focus upon foreign countries, such as Finland, Denmark, Korea, and Jamaica, none of which has helped to determine causes of autism in American children.

In addition, she notes that the National Institutes of Health spend five times as much research funding on behavioral intervention as biomedical intervention, even though many children and adults with autism also deal with serious autoimmune and gastrointestinal issues as well as seizures. Moreover, many of the behavioral studies duplicate previous research and have nothing new to offer. As she concludes, “There has been little to no return for autism families or the taxpayer from this research.” Considering the increasing rates of autism and the costs of taking care of these children potentially all of their lives, everyone should be concerned about how taxpayer money is being wasted on research that is not producing, nor even likely to produce, a cure for autism.

Recently, The Atlantic published an article entitled “The Dangers of Snake-Oil Treatments for Autism” describing how parents of children with autism seek various nontraditional methods to help their children. [To read this article, please click here.] Author Alisa Opar focuses upon autism mom Ariane Zurcher’s desperate attempts to help her daughter, Emma, by pursuing a wide variety of interventions. According to Emma, only occupational therapy was beneficial. Her mother has embraced neurodiversity, stating, “My entire focus changed. Instead of fighting against Emma’s neurology and trying to cure this heinous disorder, I started finding ways to help her flourish.”

The author notes that 88% of children with autism are treated with alternative therapies, which she describes as having “no scientific evidence to support these purported benefits” as well as few being “adequately tested for safety or efficacy” with some being “downright dangerous.” Furthermore, she states, “These unproven treatments do not come cheap, and some are harmful.” In this article, parents who pursue alternative therapies are portrayed as desperate, gullible, and ignorant. For example, she states, “For most parents, who have little understanding of how science is done, wading through claims about alternative treatments can be befuddling.” Additionally, she quotes clinical psychologist Catherine Lord, who describes autism research as “probably very confusing for parents.”

However, the article also provides clues as to why parents seek alternative therapies. Columbia University psychiatry professor and child and adolescent psychiatrist Jeremy Veenstra-VanderWeele is quoted: “We do not have treatments that relate in any way to what causes autism spectrum disorder, or that really relate to what’s happening in the brain.” Moreover, the author states, “The list of treatments with a solid evidence basis is short.” Perhaps if the NIH funded better research and Autism Speaks rededicated its focus and funding toward curing autism, more treatments would be available to parents.

We parents who have pursued alternative therapies, such as sensory integration, chelation, special diets, nutritional supplements, cranialsacral therapy, and other interventions we believed would help and not harm our children with autism, had to do something to make our kids better. We could not wait around for traditional medicine to come up with treatments that may be as “downright dangerous” (such as the FDA-approved medication Risperdal) as alternative treatments are purported to be.

Until a cure for autism is found––and I believe that not only will a cure be found but also that parents will be crucial in finding that cure––parents need to keep searching for safe ways to help make our children better. We cannot rely upon Autism Speaks nor the National Institutes for Health nor conventional medicine, all of which have failed our kids miserably. In the meantime, I keep praying for the day that the cure for autism will come and strive to keep Alex as healthy as possible, knowing that with God, all things are possible.

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

Beyond Pollyanna

 

I have a confession: I am a Pollyanna. For those who haven’t read Eleanor Porter’s classic novel named after its heroine, Pollyanna is the girl who always finds reasons to be glad, no matter what the circumstances. Her optimistic attitude has become so widely known that the dictionary defines Pollyanna as “a person characterized by irrepressible optimism and a tendency to find good in everything.” This admission comes as no surprise to my family and close friends. My positive attitude has even influenced Ed after years of being married to me. This week he told me that he realized he’d started thinking like me because instead of being annoyed that he didn’t feel well, he was thankful that he had come down with a cold when he did since he had various obligations the weeks before and after he got sick. With Alex and the challenges of autism, this upbeat attitude has helped me put things in perspective. Sure, he can’t tie shoelaces, but he likes wearing slip-on shoes.  While he’s on a restrictive diet, he’s a really good eater.  Although he has to take several pills a day, he swallows them with ease and never complains. I’d like to think he gets that Pollyanna attitude from me.

While I always try to see things in the best light, some things about autism just can’t be praised. This week, I ran across three blog entries whose writers’ perspectives regarding autism confused me. The first, entitled “Autism: Not Something to be Feared, but Embraced” is written by Andrew Clark, a college senior with Asperger’s Syndrome, an autism spectrum disorder. While I appreciate his willingness to share his perspective as an adult with autism, I’m puzzled by his assertion that autism is something to be celebrated. He describes his poor motor skills and sensory issues that make his sense of touch, smell, and taste overly sensitive. Moreover, he talks about how he was cruelly bullied all through school by his peers. Yet, despite these obstacles he’s faced, he thinks autism is a good thing, to the point that parents should not try to cure their children. He comments that with autism,  “parents see their children in emotional agony and want to be rid of the ‘ailment,’ so money gets thrown around to find the cause, which would naturally lead to a search for a cure.  Society then views the ‘disorder’ as this horrific malady that isn’t understood but feared by the average person.”

I think any parents who see their children in “emotional agony,” yet fail to do everything to free them from this crisis would be negligent. Furthermore, I disagree that money spent on finding a cause or cure for autism is “thrown around” because anything that makes life better for these children is worthwhile, as I discussed in a previous blog entry, “Curebie.” I also find the author’s use of quotes around the words ailment and disorder as puzzling since autism obviously is an ailment, often with physical symptoms, and typically is classified as a developmental disorder. Perhaps because he has been diagnosed with autism, he does not see himself as having a disorder. On the other hand, since he will graduate from college, he clearly has overcome many of the obstacles autism often presents. While I agree that those with autism should not be feared, the consequences of not addressing the rapidly increasing rate of autism should, indeed, be feared. Perhaps he will be able to live and work independently, but many on the autism spectrum cannot, and that is scary.

In another blog entry with a similar point of view, “Why Autism Isn’t Always Bad,” writer “Aunt Becky,” the mother of an 11-year-old son with autism, asserts that autism is a good thing. (Aunt Becky also writes a blog called Mommy Wants Vodka, which has a tagline: “Mommy drinks because you cry.”) Pointing out that her child is “only lightly affected by the disorder,” she states in bold print: “Autism gets a bad rap.”  Well, of course, autism gets a bad rap; it can affect a child’s language, interaction with others, behavior, family life, health, and future. Autism deservedly gets “a bad rap.” She goes on to describe her son as having “delicious quirks” that are “simply to be enjoyed. They're quirky and adorable.” While quirkiness may be entertaining in a child, those kinds of behaviors typically do not translate well in the adult world. She goes on to assert “the priceless lesson”:  “that being normal is overrated.” Certainly, we would hope that others would be tolerant of our children’s differences, but even better would be that our children would not exhibit those quirks that call attention to themselves; being “normal” would make their lives much easier.

The third blog entry I read this week regarding impressions of autism was written by Jo Ashline, the mother of a 10-year-old son with autism, in her blog, A Sweet Dose of Truth. In her recent post, “Congressional Hearings on Autism: My Son Is Not a Burden,” she pointed out her upset that in the recent hearings in Congress (which I discussed in my blog entry last week, “Fighting for Our Children”), statements were made that children with autism were “a burden.” Although she candidly confesses that as a parent of a child with autism, she herself has felt “paralyzing fear,” “overwhelming exhaustion,” “lingering loneliness and unrelenting frustration at my lack of ability to help my child in the way I so desperately desire,” she asserts, “But I have never, not once, not even for a nanosecond, felt that my son was a burden.” If, she truly has never felt a sense of burden, I applaud her. Although I love Alex with all my heart and soul and would do anything to help him, there are times when the frustration, fear, exhaustion, and even despair caused by autism has led me to feel burdened, to yell, “I want my life back!” or to pray that he will sleep a little longer so that I can get some much-needed rest or to feel jealous of parents who have “normal” children. (I never said I was a perfect Pollyanna.) At those times when my positive attitude fades, I have to remember that the burden is not Alex—the burden is autism. Perhaps that clarification needs to be made when speaking of these children, who are victims of an affliction that should not be “embraced,” deserves its “bad rap,” and truly imposes a “burden.”  Therefore, I will keep fighting so that Alex has everything he needs to be the best he can be. Those who disagree with me can celebrate autism all they want; I will think positively in my own way, believing and hoping for a cure—a real reason to be glad.

“So be strong and courageous, all you who put your hope in the Lord!” Psalm 31:24

Sugar-coating

This past week, two reports in the national news regarding autism caught my attention. An article in USA Today entitled “Adults with Autism Speak Out” notes, “Today, as more children with autism enter adulthood, some are rejecting the idea that autism is a disease to be cured.” Not surprisingly, those adults with autism who vocally oppose the concept of curing the disorder are usually at the high-functioning end of the spectrum and are often categorized as having Asperger’s Syndrome. Some feel that the desire to cure autism means a lack of acceptance of the child as he or she is. As Cathy Pratt, director of the Indiana Resource Center for Autism, states in this article, “If their autism is part of their character, part of how they identify themselves, to say to them that we have to cure you now is really saying that we don’t accept who they are now.” Asserting that autism is not only something to be accepted but also a condition to be celebrated is Dana Renay, president of the Autism Society of Indiana. Ms. Renay, who is also the parent of a child with autism, is quoted in the article as saying, “People with autism can do anything they want to do. They should be given the opportunity to be whomever they want to be, and part of the greatness of who they are is their autism.” [To read the entire article, click here.]

Echoing this concept that autism offers certain benefits, a Fox News report, “Autism Can Be an ‘Advantage,’” points out that “scientists need to stop viewing the traits of autism as flaws that need to be corrected,” as explained in a recent commentary in the journal Nature. According to University of Montreal psychiatry professor Dr. Laurent Mottron, “Recent data and my own personal experience suggest it’s time to start thinking of autism as an advantage in some spheres, not a cross to bear.” Dr. Mottron supports his position by noting that people with autism often display extraordinary memories and special skills in auditory and visual tasks. On the other hand, Dr. Mottron also points out the realities concerning the challenges autism poses, stating, “One out of ten autistics cannot speak, nine out of ten have no regular job, and four out of five autistic adults are still dependent on their parents.” [To read the entire report, click here.]

As I previously explained in my blog entry “Curebie,” I am a parent who actively seeks and prays for a cure for autism. Perhaps my recent experience with Alex’s anxiety attacks over the weekend has made me especially frustrated with those who sugar-coat the realities of autism. After watching our nearly twenty-year-old son become so agitated that he hurled his six-foot frame at Ed and me, hitting, kicking, and biting, I fail to see how autism is an advantage. As he yelled about his obsessions, enhanced by his phenomenal memory, ranting repeatedly about exact gas prices on specific dates several years ago and frantically blurting, “I’m sorry!” and “Happy New Year!” over and over to make certain we knew how angry he was, we have trouble seeing these autistic behaviors as anything but flaws, “crosses to bear” for all three of us. Sadly, we’re not the only parents dealing with these upsetting behaviors that need to be eradicated instead of celebrated. Certainly, we love Alex unconditionally and know that he can’t help the way he behaves, but we hate what autism does to him. Just as my parents refused to allow me to walk around terribly nearsighted and made certain that I had glasses or contact lenses to help me deal with the limitations of my eyesight, Ed and I have worked to help Alex overcome the obstacles autism has presented in his life. While I always try to maintain a positive attitude, I refuse to look at autism through rose-colored glasses, and by sharing our experiences honestly, I hope that others are not blinded by those who present autism as something wonderful. Of course, those with autism deserve understanding and acceptance, but what they deserve most is to be able to live life to the fullest, happy and free of the limitations of autism—able to express themselves, hold down jobs, and live independently. Don’t all parents want that for their children?

“For they do not speak peace, but they devise deceitful matters against quiet ones in the land.” Psalm 35:20

Curebie

Last week I finished reading one of the books on my summer reading list, autism mom Kim Stagliano’s memoir, All I Can Handle: I’m No Mother Teresa: A Life Raising Three Daughters with Autism. As the mother of only one child with autism, I marveled at how well she juggles all the responsibilities of dealing with three children on the spectrum along with working as an autism advocate through her writing. Moreover, her positive attitude and sense of humor impressed me, especially considering some of the difficult times her family encountered along the way. At one point in the book, she describes herself as a “curebie,” and I identify with this label, as well. She explains that a curebie is “an autism parent who believes that, in our lifetime, we will be able to bring these kids to a point where they blend in with their peers and can live full, independent lives—through a combination of medical treatment, therapy, schooling, and a rosary that stretches from Connecticut to California.” Even though autism is typically characterized as a “lifelong disorder,” many parents like us pursue various therapies and interventions with the hope of curing our kids.

While one would think that wanting to cure children from a condition that impairs their ability to interact with other people, as well as often affecting their physical health, would be a positive goal, being a curebie makes one the target of some critics. This week I read a blog entry by an autism mom who asserted that she didn’t want to cure her child because she loves him just as he is. She believes that removing his autism would take away his personality and deny him of his true self. I noticed that her child is only three years old and wondered if she might feel differently about her position after dealing with autism for several years, especially during the turbulent teen years, when children on the spectrum may become aggressive as a result of hormonal changes. Perhaps she, indeed, thinks that her child’s behavior is part of his natural temperament and not the result of food sensitivities, toxic metal poisoning, yeast overgrowth, or other physical ailments. With Alex, we know that all of these conditions have affected him; therefore, we don’t believe that taking away the autism and all its accompanying symptoms would rob him of his identity; we know that when he’s feeling well, he’s an easygoing, happy, cooperative young man. That’s his true personality. Aside from autism parents who don’t want to change their children, some adults on the autism spectrum who are able to convey their feelings have asserted that wanting to cure autism is wrong. They tout neurodiversity, the acceptance of people who are not neuro-typical and eschew the term “normal” for those who are not on the autism spectrum. Certainly, parents of children with autism want acceptance for our children as they are, but we curebies want something better for our children: we want them to be the best they can be, so we keep searching for ways to make their lives easier. Like all parents, we love our children as they are, but we always want what’s best for them and are willing to move heaven and earth to help them attain that goal.

Last week, I watched an old rerun of Little House on the Prairie in which Mary thought she was overcoming blindness because she perceived images of light. After a doctor explained to her that she was not actually regaining her sight but sensing the warmth of sunlight that caused her brain to imagine that she saw light, she was devastated. She said that she wanted to see so that she could help her husband, who was also blind. Her father finally made her admit that she was also disappointed because she wanted to be able to see, as she confessed, “I wanted to see for me!” Similarly, I confess that I want Alex to be cured of autism because it would make life easier for me. Aside from the everyday responsibilities of overseeing his self care and making certain that he stays safe, I would welcome the relief of not having to worry that he can live independently if something happened to Ed and me. So, yes, I want Alex to be cured for me. However, I also unselfishly want Alex to be cured so that he can enjoy life to the fullest without physical ailments that he has dealt with through the years and without the sensory, communication, and social difficulties that make interacting with other people a struggle for him. At this point, I can’t see how that will happen and must rely on faith that God will take care of Alex. As I was reflecting on these thoughts the other night, one of my favorite country songs was playing in the background, “The Impossible” by Joe Nichols. The last few lines of this song offered me encouragement about our situation: “ 'Cause there’s no such thing as hopeless if you believe. Unsinkable ships sink; unbreakable walls break. Sometimes the things you think would never happen, happen just like that. Unbendable steel bends if the fury of the wind is unstoppable. I’ve learned to never underestimate the impossible.” Although a cure for autism seems impossible right now, as a curebie, I keep hoping and praying that one day Alex and all others affected by autism will overcome the obstacles, as the “unbreakable walls break,” and know that with God, nothing is impossible.

“The moon will be as bright as the sun, and the sun will be seven times brighter—like the light of seven days in one! So it will be when the Lord begins to heal His people and cure the wounds He gave them.” Isaiah 30:26