One in 88 hit me hard.
I wasn't surprised, sadly. This isn't the first time since Leah's diagnosis that the autism rate has taken a jump in the wrong direction. But this one felt more personal. The CDC calculated one in 88 using children born in 2000. Maryland was one of the states in the study, and our school district was one of the ones surveyed.
Leah was part of this new equation.
The announcement came with the CDC's usual platitudes about better diagnosis, and my usual frustration that the majority of US journalists parrot this information without questioning it. Interview a group of veteran special educators, and they'll tell you what the government and the medical community refuse to acknowledge: A couple of decades ago this was a far, far rarer disorder than it is today. The claims of better detection and diagnoses imply that there are significant numbers of adults with autism who have been mislabeled or have never been found. I'd love to see just one journalist choose to look for them, though I know how that story will turn out. They won't find much. If Leah and her special education classmates were 10, 15, or even 20 years older, there still would have been no mistaking them. They are children affected by autism.
It pains me that a growing number of families will be walking this walk, while we wait for more people to ask the right questions. When I read the news, I wonder how many of the reporters have looked away from the numbers long enough to contemplate what it's like to live in a family of a child with autism. If a reporter ever calls, I'll be happy to talk.
I'd tell them about Leah's younger sisters, twins, who practiced crawling in waiting rooms. They still look with envy at the gym equipment at the occupational therapy clinic. Therapists have come in and out of our house to work with Leah since Lauren and Maddie were born. I wonder how many families would welcome the idea that every one of their child's teachers comes through their front door, sidesteps their clutter, glimpses sibling squabbles, sees every incomplete chore, and hears snippets of phone calls now and then. Luckily many of Leah's therapists have welcomed all three of our children into their hearts, and even reconfigured plans sometimes to accommodate little sisters who hate to be left out. If you want Hamilton gossip, bypass the neighbors and go straight to the therapists.
I'd point out that the therapists don't work for free, although many of them have been worth ten times their salaries. Leah has been on a waiting list for more than seven years. When her number finally comes up (this summer, we hope), we'll have some funding to help her, almost nine years after her diagnosis. Our insurance doesn't cover the home therapies, which are funded from our own bank accounts, with help from extremely devoted grandparents. We pay out-of-pocket for specialists who charge hundreds of dollars an hour. They don't take insurance, but they do know autism (as much as anyone does), so we rely on them to understand our daughter's body in ways our pediatrician does not. Lab tests, supplements, prescriptions? Hundreds a month, even with insurance.
I'd probably suggest that Leah's social skills teacher (who also directs the work of the aforementioned therapists) is newsworthy in her own right, for the fantastic progress her students make. We drive 45 minutes each way every Saturday morning to take Leah to her group. Miss Angel (yes, really) has been part of our lives -- no, part of our family -- since Leah was four. Weekend sports and activities have to fit around the group schedule. Family outings? Not on Saturdays.
Not that family trips are all that relaxing. We think about exits before we arrive at entrances, and play a Hamilton version of zone defense. The parent covering Leah may have to leave a movie early or sit on a museum bench until a meltdown plays itself out. Disney World was the happiest place on earth for us until Leah was done for the day. Her way of letting us know was to throw her shoe overboard on the Small World ride. Enough years have passed that I can laugh about the time she came down the slide at Chick-Fil-A buck naked. At the time, I mentally cursed the glass playground enclosure and sent one of her two-year-old sisters up the structure to find her clothes. Her days of indiscriminate stripping are over, but she hasn't discovered modesty yet, either. Think Adam and Eve before they wanted fig leaves. Cute when kids are two or three. Leah will be 12 this summer.
I'd challenge anyone who asks to walk in the shoes of a sibling, who might find herself in the wrong place during a meltdown, and come out of it with a torn picture, a thrown toy, or a whack on the arm. Picture a child so anxious, she stopped talking to anyone for a couple of very long months, and took a couple of years to resume talking to friends. Imagine wondering, as a parent, what you could have done better to make that child feel safe.
While I could give a reporter an earful about the stress, the cost, the thousands of ways a family with autism feels utterly alone, I'd be leaving out part of the story if I withheld the moments of genuine joy, unlike any we might have experienced without autism. Leah's sense of humor and her capacity for love were not stolen by her autism, and she is probably happier overall than most 11-going-on-12-year-olds. We don't argue about clothes. Her fashion sense is simple, and easily satisfied -- if it's blue, or has Hello Kitty on it, it's good. The only time she shows interest in a cell phone is when she borrows mine to play games on it. When she looks me right in the eye (yes, she can do that) and says, softly, "Mommy," I cannot imagine my heart feeling more full. She will seek me out, always, even during the years when Lauren and Maddie will find my presence in their world annoying. I have a feeling that will be a huge perk.
This is what life with our 1 in 88 is like. Ask another family, they'll tell you a different story, with a few similar plot points: Not enough funding, not enough answers, not enough urgency from a government that will one day have to step in and take care of a lot of these children. The numbers are new, but the reality is the same.
If you want to help families with autism, visit our Family and Friends fundraising page. Once again, we are supporting TACA.
