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