The most recent estimates from the CDC tell us that 1 in 50 school-aged children are on the autism spectrum. That’s a considerable jump from the 2008 estimate of 1 in 88 children. Which itself was a huge jump from 1 in 150 in 2000.
So what gives? A raging epidemic? Not really—at least not this time around. It seems that a major reason for the jump is the CDC’s new method of data gathering. The 2008 number of 1 in 88 is based on a survey of clinical records of 8-year-old children in only 14 states. But the new numbers are derived from a national phone survey of parents of children aged 6-17.
That’s a lot of changed variables, so the numbers are bound to be different. Not to mention, the latest study reports a large increase in older children (ages 14-17) who were not previously identified as being on the autism spectrum now receiving a diagnosis—a sign that increased awareness is leading to increased diagnoses.
Then there’s this difference, which really grabbed my attention: One of the largest increases in reported cases is of children shown to be on the less severe, more mild, end of the spectrum.
This is probably an apt description of my ASD kids. They’re verbal. They score pretty high in intelligence testing. Their social deficits, while real, don’t tend to be crippling (well, maybe sometimes). They have mild forms of ASD.
Here’s What Mild Looks Like
But just what does mild look like? Here are a few pictures.
• Mild is the adolescent girl who, in the throes of a melt down, spits a mouthful of her half-chewed dinner at her father.
• Mild is the seven-year-old whose reaction to even the smallest disapproval or conflict from his parents borders on global thermonuclear war, complete with high-pitched, spine-tingling screams.
• Mild is the four-year-old who, if the conflict between what he wants and what he needs to do gets too intense, goes stiff as a board and refuses to talk.
• Mild is the nine-year-old who comes home crying, convinced that he’s a complete failure because he can’t understand why his classmates don’t want to play dodge ball according to his unique rules.
So while it is good news that the increase in diagnoses is for kids on the mild end of the spectrum, observers need to understand that mild ASD is not the same as a mild head cold. It’s hard. It’s painful. And it doesn’t go away.
Mild, but Significant, Improvements.
Something else about this term, “mild.” The fact that my kids are doing as well as they are is a testament to the benefits of intervention and education.
My oldest, for instance, has come so far that a general psychologist—one not trained in the intricacies of ASD—wonders if he is on the spectrum at all. Of course, this is highly unlikely, seeing how the school psychologist, the psychiatrist, and our ASD psychologist all stand by their diagnoses. Still, it’s a huge relief to see this kid overcome some of his social deficits and learn how to deal with many of his sensory processing challenges. And there are times when we can’t tell whether what we’re seeing is ASD or just ATD—American Teenager Disorder.
The there’s our youngest. We caught him early—around 18 months—and he has been receiving speech and pragmatic language therapy for nearly two years. He has made significant headway in his social skills, and some of his sensory problems have begun to diminish. Still, a day doesn’t go by without Katie and me looking at him, then looking at each other, and sharing an all-too familiar sigh.
Yes, therapy works. Katie and I can attest to the fact that our kids were not always as manageable as they are now. That’s because, in part, we know what we’re doing now—at least more than we did when the first diagnoses were handed down four years ago. Using the techniques like cognitive and dialectical behavior therapies, we are learning how to handle, and sometimes even prevent, melt downs. (We don’t always do well, mind you, but that’s a different story.) We’re teaching our kids how to understand their peers. We’re showing them strategies for dealing with the stresses they feel just living in a neurotypical world.
Through bitter experience, and thanks to a lot of help from coaches, we are also getting much better at advocating for our kids in school. And the older ones are even beginning to learn how to advocate for themselves.
We also have not shied away from medications if we think they can help manage some of the symptoms of ASD. I’m talking about antidepressants, ADHD medicine, sleep aids, and the occasional anti-psychotic. Every now and then, we cringe at the thought of the chemicals our kids are ingesting. But then we think back to what they were like before, and we relax.
Beating the Odds?
It’s a good thing, every now and then, to chart the growth our kids have made. But we both know that this doesn’t necessarily mean that they’re being cured. In fact, a recent study showed that while it is possible for some people on the autism spectrum to recover to the point that they lose their diagnosis altogether, it is still pretty rare, and it never happens without years of intensive therapy.
That’s what we’re working toward, even though we know it may never happen. It’s why I make the fifty-mile round trip journey to our therapist twice a week. It’s why Katie has read close to twenty books on ASD and its treatment. It’s why we are in weekly contact with our kids’ teachers, guidance counselors, and school administrators. It’s why we don’t have a social life—or much of a life at all. And it’s why we keep working with our kids, never excusing them or letting them off the hook. They have made good progress so far. But they have a good way to go if they want to beat the odds.
So the next time you hear about mild autism or mild Aspergers, don’t write it off. Usually, there’s a lot going on behind the scenes—a lot of heartache and anxiety. A lot of hard work and uphill climbing. A lot of praying and prodding. A lot of two steps forward, one step back—and sometimes the other way around. But it’s all worth it. We ASD parents know our kids have huge potential, and we won’t rest until we see them realize it.