That was the headline in today’s paper. So, if your child was diagnosed with autism in the past, he could be instantly “cured” in the near future—if he doesn’t fit the new definition. But why doesn’t that sound . . . right?
Here’s what has transpired to date. A panel of experts, appointed by the American Psychiatric Association, is recommending pretty dramatic changes in the present criteria for diagnosing autism.
For example, with the new guidelines, there would no longer be related disorder categories, such as Asperger’s or PDD-NOS (pervasive developmental disorder, not otherwise specified).
Instead, there would be just one autism spectrum disorder, and qualifying for that diagnosis would be much more difficult than the current guidelines.
But here’s the upside. These experts claim that such changes could dramatically affect the rate of autism.(In some places, the rate of autism is now as high as 1 in 100 children.) In fact, Dr. Fred R. Volkman, director of the Child Study Center at Yale University of Medicine says, “The proposed changes would put an end to the autism epidemic. We would nip it in the bud.”
Okay, first pause.
Changing statistics do not improve a problem. For example, we could raise the driving alcohol limit, and thereby greatly reduce the number of people arrested for drunk driving. But a change in those statistics wouldn’t mean we’re now any safer on the road. In fact, changing the criteria for drunk driving (by making it so less people were deemed driving under the influence) would only put everyone more at risk.
Is money partially (or completely) driving this reclassification? With the current criteria, hundreds of thousands of people receive state-backed special services. So, you gotta wonder if tightening the criteria for autism and eliminating its related disorders isn’t just a creative way to help fix existing state budget problems.
That being said, diagnosing autism and its related disorders has always been subjective, and this latest attempt to change the criteria underscores that point. In other words, such diagnoses have never come about in the same way, for example, as a cancer diagnosis—where there’s tangible “proof.”
And here’s another truth: While parents of kids with Asperger’s and PDD-NOS may presently qualify for certain resources, those services are limited. Often, such assistance does not even render significant results.
So maybe this is one of those blessings in disguise.
Maybe—if such changes pass—more parents will be motivated to learn about brain organization and how they can facilitate positive changes in their child’s brain wiring. Maybe more parents will no longer be resigned to out-of-bounds behaviors that they’ve been told to “expect” if their child has autism or one of its related disorders.
And maybe, just maybe, the focus will return to this question: How can we best help kids who are struggling? If that is the driving question, then having or not having a diagnosis becomes irrelevant.
As parents, we spend a lot of money hoping that what we do now will pay off when our kids are adults. We invest in competitive sports. We hire tutors. We give them music lessons. Yet we can actually give our kids something that can be life-changing—and it costs nothing.
We can create opportunities for our kids to befriend a child with a disability. No, I’m not talking about having our son or daughter occasionally show up to become that child’s “helper.” I’m talking about becoming their friend, their buddy.
As a young girl, that chance absolutely changed my life.
When I was ten, Billy Mulligan moved onto our street. He was also ten, but he was different from the rest of the neighborhood kids. Billy had a pretty severe case of cerebral palsy. He could not walk or talk. In fact, he drooled quite a bit and also had minimal control of his arms and hands.
Yet, his parents never saw his limitations—and this was when people still referred to those with disabilities as “crippled.” But that’s not how Billy’s parents saw him. Nope, they just nonchalantly showed us how we could include Billy in whatever the neighborhood kids were playing.
It’s odd because decades later I know that I never had an actual conversation with Billy, but I still remember that his favorite television show was Divorce Court (he used to think it was so funny). I know that he knew the name of every model car and thought it was amusing when I couldn’t name the one he was pointing to.
I can also picture our neighborhood baseball games, where Billy sat strapped in his huge specially-made tricycle, taking his time to finally maneuver his hands around the plastic bat. And I remember his huge smile whenever he’d make contact with the large plastic ball and his brother ran to first base for him.
He was only on our block for a year, but I know that being Billy’s friend has stayed with me forever.
That’s because for my entire adult life, I have worked with all kinds of kids—including those with brain injuries, autism, and yes, cerebral palsy. But I can’t ever remember viewing any of those youngsters as anything but another great kid I was going to get the privilege to know. That kind of certainty had to have started with Billy Mulligan.
So, yes, we can provide life-changing experiences for our kids . . . and we can do so without ever spending a dime.
As parents, we’re wired to protect our kids at all times. But what happens when we react without thinking through the consequences?
Last week a dad was arrested for coming onto a school bus and screaming profanities to those who had been bullying his daughter who has cerebral palsy. Once the story hit the media, the man received a lot of support and empathy from other parents, especially after he stated that he felt this was his only recourse when the school and bus driver did nothing to help his child.
I’m with the group who doesn’t think the man should have been arrested for trying to protect his daughter. But I always find myself asking questions when situations are not so clear cut, and several come to mind with this incident:
• Was his daughter actually safer after he went on the bus?
• Since he threatened the kids collectively, could that also be considered a kind of bullying in itself?
• Did the other kids on the bus (who were not involved in the bullying) feel unsafe by the father’s actions?
• If his daughter was not safe on the bus, then why was she still riding on it?
So what might have been a different option when the school was not responsive?
The father could have written the school board that he was keeping his child home from school every day until they could prove that all kids were safe on the bus. He could have also solicited as many parents as possible to do the same, noting that any child on the bus could be the bullies’ next victim. This type of action would have likely caught the media’s attention to do a story, especially since bullying has become a hot topic.
And why might the school have responded to the above solution and not the father’s individual calls? Namely, unexcused absences cost the schools a lot of money that they cannot afford to lose. Also, school board officials are elected, so they try to avoid negative publicity whenever possible.
Sure, we’d all prefer that school officials would act solely out of sheer concern for a child. But we may have to settle for finding other ways to motivate them.
In short, there’s no getting around this truth: Ultimately, we’re the ones who have to ensure that our kids are safe. But to make certain that happens, we may first have to rein in the primitive part of our brain—where we’re wired to react and protect—so that we can then use the better part of our brain to come up with a good, viable solution.