Why We Must Persevere

22 Nov

This was written two years ago in January 2005 and published first in HerWord.com. , when the incidence rate was in 1 in 500. Today, Alphonse is 13 years old, and autism strikes 1 in 150 children worldwide.

January is best remembered as Autism Consciousness Month, with a special week heralded to recognize autism in our lives. For many Filipino families, this week hardly merits any attention, but to families like mine, this is an opportune time to underscore our special advocacy.

When Autism Came (Alphonse at 18 months

When Alphonse was diagnosed with autism in 1996, the odds of having a child with Pervasive Developmental Disorder or PDD (the umbrella categorization for several related disabilities, of which autism is the most prominent) was one in 10,000. Alphonse is the first child in both our families to display overt signs of autism, though in hindsight, we could certainly pinpoint a few quirky relatives who displayed little or no social interaction with the rest of the clan. Understandably, his diagnosis came as a shock to us and to our families.

Today, current studies peg the incidence rate (simplified, the probability that a person with no family history of PDD will have a child with autism) to be one in 500, though in some First World countries like the United States and Australia, some studies have placed it at one in 250. (A small township in New Jersey reports an incidence rate of one in 150, for reasons yet unknown.) Autism is also four times more prevalent in boys than in girls.

In the intervening years, this significant rise in incidence rates has baffled many, experts included. Theoretically, this could be interpreted as a result of any one of three things: one, better diagnosis and education (more people seeking help and more physicians able to diagnose the problem correctly); two, an absolute increase in PDD cases translating to real numbers and real people; or three, both these factors combining to form a potent explosion in numbers. Whatever the reason, this startling phenomenon knows no boundaries, insidiously insinuating itself in families of all races and ethnicities, lifestyles, even economic levels.

Diagnosis rests on a standardized list of signs and symptoms as described in the Diagnostic and Statistical Manual of Mental Disorders or DSM IV. This is so widely used around the world that when we speak of autism, we understand that we refer to deficits in social relatedness, communication, and behavior. Children with autism usually display a delay in these areas and most parents describe their children as aloof, seemingly deaf, uncommunicative, and with persistent repetitive or stereotypic behavior. I remember Alphonse as a toddler who barely made eye contact. He lost the three words he knew at one year of age and grunted and whined to make his needs known. He stood and walked on tiptoes, flapped his arms and spinned everything he touched, even food. Our developmental physician went through the list with us and while six subcriteria (there are four in each of the three criteria) – with at least two from social relatedness, and one each from communication and behavior – were enough to call it a clear case of autism, Alphonse had 10 of a total of 12.

It is unclear what causes autism. Many years after my son’s diagnosis, a search of the Internet on possible causes reveals as many confusing details as there were in 1996. Still, some issues are worth looking into, like the role of mercury (thimerosal)-based vaccines in autism (the measles-mumps-rubella combination vaccine is most suspected because of the onset of autistic symptoms in many children at around the time the vaccine is given) and the effects of casein, gluten, and glucose in a child’s neurological development, among others. Because there are many theories on how autism evolves in a child’s neural network (many experts still quibble on the effect of genetics vis-à-vis environment), there are various recommended scientific, biomedical and educational approaches to this most perplexing puzzle

  Autism’s Quirks

It would not be a stretch to call this an autism epidemic. Alphonse, in 1996, was one of the youngest ever diagnosed (at one and a half years of age), though realistically, he should have been seen by a developmental pediatrician a lot earlier (by at least six months) had denial not temporarily thwarted the road to recognition and acceptance. These days, it is no longer uncommon to find a year-old child in therapy, and toddlers of ages two or three are the norm rather than the exception. This is a heartening development, even as it saddens me that so many children now face the same uphill battles Alphonse fights each day. Early diagnosis often leads to early intervention, giving these children an edge in the battle to claim “normalcy.”

As a mother of a profoundly autistic 10-year-old son, I must admit that I made a lot of mistakes along the way. While major issues in the household were shared by my husband and me, my husband deferred to my decisions when it came to Alphonse’s needs, so confident was he that I knew what was best for our son. Although I had a medical background, this, I found out, was not a reliable indicator of the extent of my abilities to help my autistic child. Like many parents of autistic children, I struggled with educational issues for my son. Finances were a major limiting factor, true, but ignorance and helplessness distracted our pursuit for better intervention for my son. I listened to wrong, though well-meaning, advice from some therapists, enrolled my son in so-called educational programs that turned out to be simple money-making schemes for supposedly concerned parties because we honestly thought they were going to help, and latched our hopes on to every possible “cure” sold in the market. As I groped blindly along the often difficult road of raising an autistic child, I made mistakes because I simply didn’t know better.

Books on autism and treatment of this condition are still very difficult to acquire in the country, and when they are available (in limited supplies during autism conferences), they cost an arm and a leg. Few people know where to ask for help when their child is diagnosed with autism; the network simply isn’t there. Many special education schools lack the mechanisms for checks and balances, and it is difficult to determine the effectiveness of their programs. There are very few health and education personnel available to answer the needs of a growing populace. Even our country’s Autism Society, despite its best efforts, sorely lacks funding, making it seem miniscule in light of autism’s rapidly increasing numbers.

Thankfully, the Internet is a saving grace. With more information available to parents today, I hope that they will be spared of the stumbling blocks our family has had to overcome. Sometimes, however, the deluge of information can be confusing and frustrating; expert opinions rebutting one another with polar views can be a daunting task to sift through. It is during these times that the best weapon any parent can arm himself/herself with is perseverance. It is not enough that we love our children; we must fight tooth and nail for them.

The entry of Applied Behavior Analysis in the country is also a welcome development. I certainly hope that many children will benefit from its programs. ABA is an expensive proposition; in the United States alone, parents have had to work three jobs to afford the $60,000 to $80,000 per year the program requires. One parent in an autism forum even quipped, “It’s like sending a child to Harvard at age three,” and this holds true for all, even when costs are marginally lower in the Philippines. Thankfully, there are socialized programs in our country today, and what one lacks in money, one can more than make up for in grit and determination.

Someday, I hope to see more parents helping other parents with the benefit of their wisdom, experience, and hindsight. Speaking from a personal standpoint, I would have saved myself countless heartaches had I known then what I know now. We are a community of parents, with autism as a linking factor, and the welfare of our children as our most imperative objective.

Alphonse started as a toddler when, hand in hand, our family began our journey. Today, he is 10 years old and I can honestly say that we have barely begun to scratch the surface of his puzzling world. It continues to be an adventure of a lifetime, a rollercoaster ride, a safari where we strive to tame the animal that goes by the name autism.


One Response to “Why We Must Persevere”

  1. acollage November 25, 2007 at 3:28 am #

    Today the stats are one in 150 kids on the spectrum, with 1 in 94 being boys. You are so right in that ‘if I knew then what I know now.’ More blogs talking about autism and more general public being aware, we’re a better world for it. (Still a long way to go though! We went to dinner tonight. My son smashed a peanut on the ground on the way out. Some grandma glared with ‘that’ look on her face, until she saw me smiling at her. Broadly. How quickly her sour face changed to a smile, but only under duress. She had no clue, and didn’t realize that I’d much rather he smash a peanut in delight than throw a peanut at someone in anger. Judgmental attitudes — we need to continue to hope those go away.)

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