Color me autism blue on Christmas

It was in the second half of the ’90s. The count was one child out of every thousand. Daughter Andrea was diagnosed with ASD while we were living within a stone’s throw off the beltway on the nation’s capital, Virginia side. Her three-year younger brother Daniel rated a similar diagnosis and the marital ties snapped. As did other marriages, I discovered later. While misery likes company, it dreads intimacy.

At the World Autism Conference in Melbourne down under in 2002, the count was one out of 500, and five years later, it came down to 1 per one hundred. That’s about the count when I last saw Saipan’s Frank and Vivian’s Nick, of similar built but a year older than my Daniel. The count is now about one per 89 by some account, and a friend reports that incidences of autism declined dramatically in California when thimerosal (mercury) preservative in children’s vaccines was discontinued. A formal study in 2004 on vaccines and autism states that “the body of epidemiological evidence favors rejection of a casual relationship between thimerosal-containing vaccines and autism.” Ask Courtney Zietke of MHS for another perspective.

Other than occasional notes from Andrea and Daniel’s mom, and a Skype session with them in Ohio while visiting my eldest this summer in the outskirts of Chicago, we remain 12 time zones apart, and that’s more than geographical distance. ASD has left many covenants by the wayside. What started as a marriage of profound care between two persons in service toward a more humane society deteriorated into a relationship of remorse and recrimination in the aftermath of the double whammy that hit the family. Distance offers but momentary reprieve.

Just when I thought I had distanced myself far enough from watching my children’s helplessness even as they attend special ASD education in Ohio after Mom took early retirement from the State Department, the English China Daily last week put out a full page coverage on autism, and followed it up a couple of issues later with individual incidences and how they were faring.

Then NewsAsia, Media Corp.’s Singapore-based TV station, reported therapy sessions that involved dolphins and elephants in Southeast Asia. I remember getting a report on son Daniel taking an immediate liking and demonstrable skill in riding a horse on his first mount. Autism’s poster veterinarian Temple Grandin had an Emmy award winning HBO-movie made of her biography for designing holding pens with “squeeze machines” for cows, demonstrating an intimate understanding of bovine behavior and preferences.

Through the years, I have become convinced that the best way to deal with autism is to learn to live with it rather than worrying about the latest fix in the market. In fact, highlighting how a child is “differently-abled” is a better way to go than lamenting what the public sector is unable to do with one’s child! Americans do have a tendency to fling themselves in search for a “cure” when confronted by an “abnormality,” and many a cinematic portrayal of the valiant efforts made by individuals, sometimes against public and private institutions who are threatened by the intense passion of the crusader, is a common docu subject for Oscar awards.

Real life, however, yearns more for mere acceptance as members of society needing a legitimate place rather than shunned freaks for their categorized aberrant behaviors. American public school systems try to “mainstream” special education efforts, at least in my experience with the CNMI PSS, but it does not have the requisite muscles to adequately supply needed resources and expertise, nor does it bother to understand the limits and possibilities of the neurological “disorder”; often, special education gropes with the most recent methodological fad dictated from funding source at the expense of efficacy, and to the detriment of those in general education.

Now come CNMI parents (Larissa, Merissa and Barbara are mothers I recall with a cause) of ASD-diagnosed children in partnership with the NMPASI office in network and fellowship being asked to give a particular ribbon to drape the public Christmas tree on island. How nice!

Blue. Make it blue, members of the Autism Society-CNMI were asked. That would be the color of sadness, in some metaphor; clarity on another. “Blue skies, smiling at me,” croons an old familiar tune. “Blue days, all of them gone; nothing but blue skies from now on!” I’ve displayed enough sadness through the years that the first meaning may abide. The parental anxieties around the table at the last AS-CNMI meeting showed no shortage of battered nerves. I will go for the second this round. Clarity. Or, my lucidity that unclarity about ASD, not unlike cancer, will abide a long, long while.

A reader from Hawaii chanced on one of our autism articles and wrote to inquire about autism incidences in our part of the world. She has three in her household. Bless her heart. She is trying to get insurance companies to cover remedial measures for autism cases in Aloha land. She’s got an uphill battle on her hands, though I might add that were we a nation with universal medical coverage, she may not have to raise her issue! The cost of autism remedies is expensive; the smile on an autistic child’s face when s/he accomplishes something is priceless. That, I am blue clear!

The oak trees have long shed their leaves in my cold part of the world, but I am tying my blue, blue ribbon around the white oak tree this season.

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