Autism once more

West Lafayette, Indiana, home of the Boilermakers, Purdue University’s campus north of Indianapolis a couple of hours drive from Chicago, was where I rendezvoused with my two autistic children and their mother. The younger child, a son who is 13, is very fond of Thomas the train and other train characters in animated videos. The older child, a daughter who will be 16 this year, likes to draw. Her handiwork had been used as a cover for her school’s yearbook. At two, she was doing Picasso-quality art, and drawing floor designs that would make my Urdu-speaking cousins proud. Both are mentally alert and intellectually competent, but their communication skills are very elementary, and their social skills infantile.

Purdue University, a land grant institution to teach agriculture and machine shop, evolved into a premier biochemical-industrial-technological seat of learning, and just for the mascot alone, it was the ideal place to meet my autistic children. Also, my eldest daughter, their half-sister who lives in Chicago, has a 6-month-old son who has yet to meet his young uncle and auntie. The reunion in Lafayette was, thus, multifaceted. I came from halfway around the world to meet them, while everyone else converged from Chicago in the west and Dublin, Ohio, in the east to meet each other.

In the end, we never saw the boilermaker, nor got around to visiting the University campus. Nor did plans to take everyone shopping at the various malls around the city materialize. The children, both now with their own laptops, were quite happy to sequester themselves in their own room. They were content to habituate their self-contained universes. The boy has mastered surfing the Internet and can download from YouTube clips of videos of children’s commercial and homemade programs. He can spend a whole day just surfing, and entertaining himself in the process, oblivious to anything else happening around him, until he gets hungry or needs to attend to his toilet. Happily, occasional forays to the swimming pool provided social time.

Like her brother, autistic daughter has become computer savvy as well. Where before her drawings were by hand, now they are computer generated. Both attend a Charter school in Dublin, Ohio, where half of the students are on Special Education programs and the other half are mainstream students. It is a measure of their mother’s efficacy in advocacy that they would qualify to attend a program costing $48K per child per annum on scholarship. Needless to say, their mother, erstwhile a program officer of the U.S. Agency for International Development, has since retired in order to be a 24/7 custodial parent.

Each child being one out of every 166 persons, according to CDC statistics, they are unlikely ever to be self-sufficient and therefore, will require structures beyond their childhood dependencies. They can remain in school until they are 22, if they qualify, otherwise the social and economic net that current public service offers is, at best, fuzzy. Estranged parents obviously are not the most helpful enablers under these circumstances. My children call me “Mr. Father”!

There are three comments on this retrospective on autism. (My previous involvement with PACA, Parents’ Association Concerned with Autism, and STaRPO, Saipan, Tinian and Rota Parent Organization, two presently non-active organizations whose role and function has since been superseded by the Saipan Autism Society, generated articles that have already seen print in our island dailies.)

* First is the cruciality of early identification. Parent(s) is (are) key! No one knows a child better than his/her parents. There are lists of development milestones, beginning at four months that one can get from medical clinics and health professionals, even PSS’ special education program and parent can use as a checklist. But even absence of such list, a parent’s intuition is to be trusted. Many instances, a parent will notice that there is something unusual about Maria or Juan but would neither verbalize his/her concern nor seek validation of their intuition since the concern may just be based on a “feeling” rather than an objectively observable fact. Also, the social stigma that goes with having a child with “special” qualities makes denial, at worst, procrastination, at best, a parent’s preferred choice.

Regardless of whether a child is deemed “normal or abnormal,” parents need to conduct periodic assessments during the first 18 months of early childhood development. Time is of the essence. Early intervention translates to increased prospects of ensuring a child’s repertoire of skills, whether these interventions be chemical, behavioral, or psychological. In autism, gluten and lactose intolerance has proven to be a critical factor in children’s erratic behavior; chemical input into a child’s metabolic processes has been known to affect a significant few, and even immunization shots has come under close scrutiny for having been suspected in inducing autistic qualities. Vigilance can never be overrated.

* Second is the identification of local resources to meet the family’s own requirements. Parents can be alert in networking with all kinds of early childhood development groups, and avail of training on the delivery of services, as well as skills in advocating for their own children. Saipan is lucky to have an aggressive NMPASI. Call them.

* Lastly, parents must beware of the danger of kindergarchy, the temptation to focus parents’ full attention and resources totally on the child(ren), particularly the eldest as has happened in the West in the last 30 years, and to the only child as has occurred in China for the last 20, and to those needing special attention, as has happened to many families, mine included, in the last 10.

We bewail the dominance of patriarchy, and rightly so. Many traditions still favor the man in the family over other members. In others, the matriarchy has emasculated needed traits of masculinity, and though the feminization of many practices is needed, one must be careful that we do not forget, indeed, “women hold up half of the sky.” It is the terror of the tyranny of the singularly self-centered child that marks our time, and the autism society and other child-centered concerns must be careful to keep in mind that the care of the caregiver is just as important as the care for the children who needs to be cared for.

It was a somber occasion to leave Lafayette, and though I suspect that there was more sentiment underneath the seeming dryness of the children’s farewell, still, to be valedictoried with, “Good-bye, Mr. Father,” leaves an empty feeling that is familiar to many parents of children with autism.