Autism Not a Boom, But A Life for Some Families

The L.A.Times recent Part 1 article in their series on autism has stirred the debate further on children who meet the criteria for the disorder.

The article shows how some parents prefer the diagnosis of autism spectrum disorder for ensuring services for their children.  For instance, Laurie Bailey notes that she didn’t feed her three-year old son, Benjamin, breakfast on the day of his evaluation, in order to “stack the odds in our favor.”

As a parent, there is nothing more heartbreaking than hearing, “There is something wrong with your child.”  My husband and I first heard the word, “autism” when the speech pathologist for our then two-year old son, off-handedly asked me during a phone call, “Do you have relatives with Asperger’s syndrome?” Shocked, I quietly answered, “No.”

At that point, our son had displayed classic signs of stimming:  he routinely walked the length of the room back and forth; he would fixate on spelling certain words like “mat” for long periods of time to the exclusion of other activities.

But my husband and I just thought these were eccentric nuisances that our son would outgrow.  We thought he was brilliant—despite a speech delay—our son could read at two-years old.

So when our speech pathologist introduced that word, we went into full meltdown.  “What is she talking about?!  How freaking dare she suggest that?!”  (Legally, a speech pathologist cannot give a clinical diagnosis of autism).

It took two additional years of other “eccentric” behavior including difficulty interacting with other age-appropriate children, recognizing certain facial cues, engaging in imitation play, fine motor skills, auditory sensitivity, etc. before we embraced the official diagnosis from a developmental pediatrician.

The suggestion that parents are hunting for diagnoses in order to bilk federal and state agencies is insulting to special-needs families.  The lifetime costs of caring for an individual with autism spectrum disorder is approximately 3.2 million. Families with a child with ASD reported an average loss of 14 percent of their annual income, according to a 2008 study in the journal Pediatrics.   

These children will grow into adults navigating the same pitfalls of life that neurotypical children do such as bullies, failed romances and job layoffs.  These needed services provide the armor that fully-equipped NT children take for granted, not an advantage.

Still, discrepancies exist in diagnosing the disease.  For instance, in a joint study published last month, researchers at Weill Cornell Medical College found that there were site differences in best-estimate clinical diagnoses for children with ASD.  Other factors affecting treatment and diagnosis include ethnic and socioeconomic status.   

So let’s hope that the next phase of autism research and treatment includes sensitivity training for those ignorant of the daily struggles of special-needs families.