Reflections on the Orthodox faith and life in this crazy 21st century world by an Orthodox priest and a few of his friends.
Thursday, April 2, 2009
Autism and the Divine Liturgy (Part Two)
Courtney in the spring of 2008, at age 9 1/2
Most Americans know very little about Autism. Many associate the disorder with Dustin Hoffman’s character in the excellent 1988 film Rain Man. But not all Autistic people are like the “Rain Man.” In fact, Autism is actually a spectrum of disorders, rather than a single condition. Although there are several common traits that are shared by most people with Autism, no two Autistic people behave exactly the same. Because of this, I thought I would reproduce the excellent introduction to the Wikipedia article on Autism before continuing Courtney’s story.
Autism has a strong genetic basis, although the genetics of autism are complex and it is unclear whether ASD is explained more by multigene interactions or by rare mutations. In rare cases, autism is strongly associated with agents that cause birth defects. Other proposed causes, such as childhood vaccines, are controversial, and the vaccine hypotheses lack any convincing scientific evidence. The prevalence of ASD is about 6 per 1,000 people, with about four times as many boys as girls. The number of people known to have autism has increased dramatically since the 1980s, partly due to changes in diagnostic practice; the question of whether actual prevalence has increased is unresolved.
“Autism affects many parts of the brain; how this occurs is not understood. Parents usually notice signs in the first two years of their child's life. Although early behavioral or cognitive intervention can help children gain self-care, social, and communication skills, there is no known cure. Few children with autism live independently after reaching adulthood, but some become successful, and an autistic culture has developed, with some seeking a cure and others believing that autism is a condition rather than a disorder.”
Now, back to Courtney’s story: After Jennifer and I received confirmation that Courtney had Autism, our first reaction was naturally to try to do all we could to “fix” the problem. Over the next several months, Jennifer read every single book in our local library on Autism, while researching the disorder on the internet and through other means. In short, she turned herself into an expert on the subject in short order.
Jennifer and I soon learned about several special schools and treatment programs for children with Autism . Many of you reading this have probably seen stories about them on TV. Most of these programs showed evidence that they had provided great help in helping Autistic children to make progress; in a few instances, some parents even claimed that their children had been “cured.” Naturally, these stories piqued our interest. The problem was that all the schools were in places far from Houston, and their costs were astronomically expensive. We couldn’t afford them, and our insurance didn’t cover much of the cost of their treatments. And we certainly had no desire to uproot our lives once again, after just having done so. What’s more; most if not all of these kids who were helped in these school s and programs started off as much higher-functioning children than Courtney.
So, we did the next best thing: we enrolled her in a special program called PPCD (Preschool Program for Children with Disabilities) in our local school district. Courtney began attending her new school in October of 2001, right after she turned 3 (and she looked really cute in her tiny school uniform!). We also enrolled her in some enrichment programs offered by the city and by local organizations for the disabled. Later, when Courtney was about 5, she began attending a supplemental school for children with Autism. Jennifer even worked there for a while. Jennifer also began attending meetings of the local Autism society, but she found that these meetings almost always turned into gripe sessions about how poorly the childrens’ schools were doing. The meetings provided little help, so Jennifer quit going.
Since she began attending school in 2001, Courtney has been blessed by a series of excellent, loving, and devoted teachers, who have provided her a great deal of help. Her current teacher, who has worked with Courtney for two years now, deserves a “Teacher of the Year” award every year. But in spite of this, Courtney has still not developed into anything approaching a “normal” child, and all indications are that she never will (though of course, miracles are possible). She can read, write and speak only at a very rudimentary level. The hardest thing of all for all of us—especially Courtney—has been her inability to communicate her feelings and to control her impulses.
Next time I’ll write more about the specifics of Courtney’s behavior, and how it relates to attendance at the Divine Liturgy. As you can tell from the title of this series, the latter was supposed to be the main topic. But I felt it was necessary to set the stage a little, so that you can fully understand the struggle that we are dealing with. Please forgive me if I have rambled.