Sitting in the waiting area of the barbershop, I grabbed the March issue of Chicago Magazine to read. The cover boasts a list of the top 100 most powerful Chicagoans with Mayor Rahm Emanuel on the front. My husband just had a luncheon with the mayor last week (along with several hundred other people), so I thought I’d take a look to see who else made the list and ask him if they were there too.
I never saw it.
Not a few pages in, I came across a feature titled “When Autistic Children are Children No More” that stopped me from flipping further. It was a lengthy profile of the plight of three Chicago area families now trying desperately to provide services for their children with autism aging out of the school system.
A summary of the story is provided on the Chicago Magazine website.
When Autistic Children Are Children No More - Across the country, an estimated 300,000 kids with autism will hit adulthood in the next decade. It’s a social crisis in the making, with few resources currently available to help autistic adults become self-sufficient after they age out of government-funded services. Only about 6 percent of adults with autism work full-time and many lack the skills to live alone, so the burden falls on parents and grandparents to find adequate support services for their loved ones. We look at three pioneering Chicago-area families who are rolling up their sleeves to create a better future for developmentally disabled adults.
Not only was it remarkable to see this kind of reporting, it was also remarkable to read the way the problem was being described, “a social crisis” and “looming tsunami” being a few. It’s unusual for a mainstream magazine to refer to the impending catastrophe as such; for a while, I kept checking that Anne Dachel wasn’t quoted somewhere within it. She very well could have been the author.
Most profound, I believe, was the large table provided for the reader entitled, “A Looming Tsunami”. Going back a few decades and forward one more, it demonstrates irrefutably what the past, present, and future look like in terms of people with autism needing services. Suffice it to say it’s startling, and even more startling perhaps, that the author warns the reader these aren’t even the real numbers. Children in private school settings were not included.
Those of us in the trenches, however, already know that. Teachers, parents, siblings, and even some doctors have been warning everyone that the next stage of the crisis is on the horizon. Where are all of these children going to go? Who is going to care for them? How? It seems others may be starting to listen.
Stories like this are significant for several reasons. First, they highlight the plight of struggling families that desperately need to be heard and helped. Second, they bring attention to a problem that is not exclusively a family’s; this is very much society’s problem. It won’t just be the families struggling to care for these adult children; it will be the taxpayer. Third, they make it clear that this crisis is not the result of better diagnosis or genetics. There is no such thing as a genetic epidemic, and yes, it clearly shows us, it is an epidemic.
And finally, they make stories like my family’s all that much more important. Our child got better. Recovery is real. Recovery is possible. And frankly, as this article shows us, recovery is necessary.
To borrow from a speech I wrote for a fundraiser I threw in 2007, the house is in fact on fire. We can no longer stand around debating if we’re just better at seeing smoke now-a-days or if fires were always popping up around us and we just didn’t notice. We can no longer walk away from burning buildings because, hey, buildings have always burned down. We can no longer ask the smoke detector companies if their smoke detectors are malfunctioning and instead of protecting us from fire, unimaginably and unintentionally igniting the spark that caused it.
Our smoke detector malfunctioned. We saw it. And then we smelled smoke. But when we called 911 and got told they wouldn’t be coming because houses don’t actually go up in flames from smoke detectors, instead of believing them, we grabbed the garden hose; the neighbor’s hose; hell, even the toilet water to put it out. And we did.
We’ve suffered a lot of criticism for that; and so be it. We would do it all over again. We were left with no choice.
But we often imagine, what if 911 had actually showed up? As this story in Chicago Magazine so powerfully demonstrates, it’s way, way past time they actually did.
Julie Obradovic is a Contributing Editor to Age of Autism.