This is our nineteen-month-old son, Nate. He has always been very special to us. On December 23rd, after two weeks of testing, Nate became even more special because he was diagnosed as autistic. Our family has become official draftees into the Autism Army.
The good news: Nate’s diagnosed and we live in a state (Connecticut) that places incredible emphasis on early intervention and therapy for autistic children. And the phrase “autism” encompasses a huge spectrum of disorders; it isn’t a one-size-fits-all label.
The bad news: No parent ever wants to hear that their child may have a labeled challenge in his or her life. Nate’s testing was also not designed to determine where he falls on the spectrum. Though we remain cautiously optimistic that he is on the brighter, highly-functioning end (i.e. not an idiot savant like Rainman), we don’t have any proof.
There are no real “signs” of autism but there are red flags. For Nate, things that he was able to do well faded. For instance, we’ve got a super video of him at 11 months, waving away on command. If we said, “Say hi, Nate!,” he’d start to wave. Now, he doesn’t do it on command. He does wave but it’s at random and, sometimes, inappropriate times. Nate also doesn’t talk. At 12 months, he had three words: book, ball, and kitty (“kit”). They faded, too. He does, however, babble, which is a good sign. Dad-dad-dad-dad-dad means that Nate’s happy (but isn’t connected to his father). In the past two weeks, two words have appeared: Hello! (said with the exclamation point) and Around. We’re hoping these are big words to build on. The biggest sign is that Nate doesn’t respond to his name. We might as well say “chicken” or “cheesecake” or “smushy buns.” They’re all the same to him. There’s a whole list of other signs specific to Nate but these are the easiest ones to point out.
In all honesty, though, if you didn’t spend much time with Nate, you wouldn’t know he’s autistic. He hides it well in a passing social encounter. He’s very expressive in photographs. And we’re very proud that Nate is affectionate, as some autistic kids are not. His latest trick is giving gigantic bear hugs. They are *the best* and he comes at you with a running start to give one. He also gives smushy yet sanitary kisses. A thoughtful boy, Nate covers your mouth with both of his hands and plants a big one on his chubby hands!
So. We know the “what.” And the “who”? Well, aside from Nate, we know that the “who” is unfairly tipped toward the male gender. Right now, 1 in 70 boys have autism (1 in 110 overall but, for some reason, it’s on the rise with boys). Some people are calling it an “epidemic” but we agree with our sage pediatrician’s thoughts on the issue: autism’s always been here. It’s on the rise simply because it’s actually being diagnosed.
Inevitably, after sharing the news with our dear friends and family, who are also marching with us in the Autism Army, instantly say, “Why does Nate have this?” I can tell you that there’s millions upon millions of dollars being thrown at that question right now. No one knows. There are lots of theories that are being disproven every day. The supposed link to the MMR shot has been debunked. Some people think autism is actually a food allergy to casein (dairy) and gluten (wheat). Some autistic kids respond positively this change in diet but it’s usually the ones who had digestive issues to begin with. (Nate’s great at digesting. Another strength!) Some people say fish oil will solve the deal. Right now, the only thing we know is that therapy—intensive, early intervention therapy—can turn things right around.
The good news is that our state provides substantially subsidized therapy for autistic children under the age of three. With a little bit of force, it took us five weeks to schedule the tests, conduct the actual tests, diagnose the disorder, and start therapy. He has six therapists (more on them later) and will start out with ten hours of therapy a week. (The goal is to increase to fifteen.) All therapy is done at home or at school (what we call daycare, which Nate attends two days a week). Once Nate turns 2 ½, he will start to transition to the public pre-school system, where he already has a coveted spot because of his diagnosis. This will provide six months’ overlap between his current therapists and new pre-school teachers. And, yes. Nate would ride to pre-school on the short bus. I have newfound respect for the short bus.
We’re keeping a running tally of the autism books we’re reading, which can be found through the “Books We’re Reading” link at the top of this page. Jenny McCarthy wrote Louder Than Words about her son who happens to be autistic. It’s a bit of a nutty book (she claims to have “cured” autism) but she explains the parents’ perspective of navigating the system well. The book starts, “When your child is diagnosed with cancer, neighbors stop by your home bringing precooked meals, hugs, and support. When your child is diagnosed with autism, families who see you in the supermarket will slip away down another aisle.” The news and the illness are so awkward that no one knows what to do with it. We are greatly buoyed by our family and friends who have joined the ranks and begun marching in the army right behind us. We’re also so grateful for all of the new friends we’re making—our therapists, blog writers, long lost friends found on Facebook. With one in every 110 children diagnosed with autism, this disorder is more common than childhood cancer, juvenile diabetes, and pediatric AIDS combined. It’s touching everyone. And we’re hopeful that Nate’s story will be able to help some other folks out there, too.
We’ll be logging Nate’s progress through the system, the highs and the lows, the good and the bad, here. We’ll also tell our stories of how we figure out if Nate’s behaviors are due to being autistic or just being a toddler approaching age two. Keep checking back to see how the story grows—we promise it will be a good one.