When the “Experts” Get it Wrong

A day after his fourth birthday, a team of educational experts told us our youngest child was severely autistic. During the hours-long assessment in which he was whisked away from us and surrounded by unfamiliar adults, the team concluded that he couldn’t talk.  In reality, he wouldn’t talk, an attached toddler hampered by anxiety that was amplified by the circumstances.

As my husband and I listened to their diagnosis, we experienced both surprise and heartbreak. We suspected he might be somewhere on the spectrum. But severely, profoundly autistic? I had taught such students in a fully inclusive classroom, some who were completely non-verbal and facing challenges that I didn’t see my son having.

When I voiced doubts about the results, I was told by the Ph.D. leading the team that I was simply in denial. She recommended a restrictive diet and possible placement in a school for children with autism.

Fourteen years later, after a mix of public, Catholic, and homeschool education, some speech and occupational therapy, dozens of amazing teachers and encouraging mentors, we have reached a milestone.

This week our son walked across the stage to receive his diploma. He graduated. From a traditional Catholic high school. With few accommodations. His strong grades excused him from all finals. He has a job and a driver’s license. He is a happy, gentle soul. In the fall he will be off to college, having been accepted at all three schools to which he applied.

So how did that team of experts get it so wrong?

There is no doubt our son is on the spectrum. He faced many sensory and developmental challenges growing up. Haircuts, barking dogs, and circle time at preschool launched him into meltdowns. Later, he struggled with public speaking, time management, and trying anything new, whether food, activity, or even shoes. By middle school, his anxiety was so great, we resorted to homeschooling for two years, one of the best decisions we ever made.

So yes, he has autism. But he also had far greater potential to overcome and to thrive than the “experts” predicted. Their methodology was flawed, resulting in an incorrect conclusion.

We are learning that some tests commonly used during pregnancy are also flawed. The New York Times  reported earlier this year that analysis of certain prenatal blood tests showed incorrect positive results about 85 percent of the time. Tragically, some couples given these diagnoses choose to abort their child. Many of them may have aborted perfectly healthy children. But even if not perfectly healthy, did their children not deserve even a chance at life?

I cringe to think of the day when the medical experts begin testing in utero for autism. How accurate will that test be? Will children thought to be on the spectrum be targeted for death as children with Down syndrome are today? How many more beautiful lives will be stolen from our world?

Whenever a diagnosis of any sort is given, we must remember that each and every person deserves the chance to live, grow, and love to the extent that they are capable.  We shouldn’t place qualifications or limits on any one’s life because of perceived obstacles.

Sometimes “experts” just get it wrong. Despite great gains made in medicine and education, predicting the future for any one individual is an inexact science. As much as we think we know, there are no crystal balls revealing what awaits any human life. There is no way to measure perseverance.  There is no test for human resiliency. No statistic on the power of love.

As for our family, much of the expert guidance we received throughout our son’s childhood was helpful. But we were always a bit guarded because of the initial diagnosis he was given. No one knows or loves your child as you do, so it’s important to trust your own instincts.

In watching our son proudly walk across the stage at graduation, I realized that his journey was actually comprised of millions of baby steps made possible by the encouragement and support of so many people in his life. Sometimes it was two steps forward, one step back, but he kept on.  And in doing so, he showed us all that he was much more capable than that first team of experts had thought.