Podcast: Searing Free Press commentary on autism haunted by true religion ghosts
If you look up the term “mash-up” in an online dictionary, you will find lots of definitions — including various mass-media riffs. For example: “a movie or video having characters or situations from other sources.” Or maybe: “a Web service or application that integrates data and functionalities from various online sources.”
This week’s “Crossroads” podcast (click here to tune that in) is a kind of GetReligion mash-up.
Let me explain. As a rule, this website focuses on critiques — positive, negative and in between — of mainstream coverage of religion news or other hard-news stories that are “haunted” by religion “ghosts” that journalists either missed, ignored or messed up.
However, we also run various kinds of “think pieces” drawn from the work of political scientist Ryan Burge and a variety of other news sources that address trends that affect news coverage. And religion-beat patriarch Richard Ostling writes Memos in which he looks ahead at newsy religion events and trends.
This week’s podcast focused on a painful, blunt, first-person essay that ran at the important news and commentary website known as The Free Press. It was written by a non-journalist — National Council on Severe Autism President Jill Escher — and the double-decker headline proclaimed:
The Autism Surge: Lies, Conspiracies, and My Own Kids
Rates of autism are skyrocketing. The question isn’t just why — but what we need to do about it right now, and what’s holding us back.
This commentary wasn’t “news,” but it contained waves of information that news-consumers would want to see. This wasn’t a feature that directly addressed religious issues or themes, but I was struck by how many questions it raised that are already affecting religious believers and institutions.
The bottom line: America’s mental-health crisis will inevitably crash into religious congregations, schools, medical institutions, etc. The decisions that these religious groups make, or refuse to make, will create important news stories for religion-beat journalists.
The podcast, and this post, are a kind of tmatt Memo about the stories that are ahead. I wrote this, in part, because I have already seen the importance of this topic in the lives of many people that I know and love in religious congregations that I know well.
There is no way to do justice to the many important themes in the Escher essay, which addresses the political controversies and cultural blind spots that make it almost impossible for politicians, scientists, educators, philanthropists and others to make serious efforts to address the stunning rise in autism cases, especially cases of “hard” or “profound” autism.
I will, however, share three chunks of her piece, starting with the overture:
In the summer of 2001 we took our younger son, two-year-old Jonathan, to the neurologist. He hadn’t developed speech, never played with toys, and had a compulsion to stare at cracks in the pavement while flapping his hands. The diagnosis was almost instant: autism. “He has it in spades,” the doctor said.
Autism? We had hardly heard the term growing up, and we had nothing remotely like it up our family trees. My pregnancy was healthy and free from risk factors. Yet here we were, handed a devastating diagnosis, with our son sentenced, for no reason we could discern, to a lifetime of severe mental impairment. And it wasn’t just Jonny. All around us grew a rapidly rising tide of autism. The numbers were surging in the local school districts. The regional developmental disability agency had become overwhelmed with new autism intakes. Serious autism, hard autism — not a sort anyone would have missed before.
When I was pregnant five years later, doctors assured me it was unlikely lightning would strike twice, especially because Jonny’s autism was not caused by some familial genetic defect, but by the time adorable Sophie was 16 months old, the signs were clear. No pointing, no peekaboo, no playing with toys. Like her brother, she met none of her cognitive or language milestones, not even close. Autism, again. In spades.
What kind of statistics are we talking about? This next passage is quite long, but readers need to wade through it.
This is a tragic tsunami of pain that is defined by stunning numbers. Once again, this wave his headed straight at all kinds of religious institutions.
I understand that we all have a certain amount of catastrophe fatigue, and if we have a choice not to believe that neurodevelopmental abnormality is afflicting an ever-increasing portion of our children, we might make that choice. But unfortunately, the empirical evidence for truly soaring autism rates, based on objective measures, is simply overwhelming. The sweeping upward curves over the past 20–30 years can be seen in almost all sectors—our state developmental disability systems, our schools, our medical providers, our Medicaid and Social Security systems—even when the definition of autism was held constant. Similar growth is seen in Canada, England, Northern Ireland, and other countries.
My state, California, is well known for keeping the best autism data in the nation, owing to its decades-old mandate to find and serve residents with developmental disabilities. The numbers are conscience-shocking and not remotely subtle. We have seen the autism caseload in our Department of Developmental Services (DDS)—which serves only substantially disabling autism that meets the definition of developmental disability, and not the full spectrum—soar from 3,262 in 1989 to more than 160,000 in 2022. That’s a 50-fold increase over 33 years.
Childhood data from earlier generations show that autism barely registered as a blip. For example, a massive and landmark study of children born from 1958–1965 found the rate of autism in seven-year-old children to be 0.0466 percent, or 0.066 percent when using a broader definition, with IQs reaching up to 82. Compare that to the CDC’s walloping finding that today, 0.5 percent of U.S. children have profound autism with IQs under 50, or who are nonverbal or minimally verbal.
CDC data also show that over just 12 years, from 2008 to 2020, autism increased across all categories of intellectual functioning. For cases with intellectual disability (IQ 70 and under), the prevalence more than doubledfrom 0.429 percent to 1.046 percent. School districts around the country have long sounded the alarm about the increasing cases of schoolchildren with autism in need of special education services. These aren’t just quirky kids, but kids who could not succeed in mainstream education. Even as the Los Angeles Unified School District experienced declining overall enrollment, its special education autism numbers surged sixfold over 20 years, from 2,784 in 2001 to 17,217 in 2021.
Here is the thesis statement, care of Walter Zahorodny, PhD, associate professor of pediatrics at Rutgers University. He is the director of the New Jersey Autism Study and has spent two decades doing research related to these trends:
“Autism prevalence has increased significantly and broadly across every group, type, and category across U.S. regions since 2000. The surge in autism cannot be explained by broadening of criteria, diagnostic substitution, or other rationalizations reflecting the hypothesis of better awareness.”
What is causing this? Who is to blame? What can be done? Why can’t our nation’s leaders be realistic about the impact of these numbers?
Politics get in the way, of course. But millions of people will also be asking ancient religious questions about a branch of theological studies defined by the word “theodicy” (background here). Also, let me note that religious leaders are not supposed to suffer from “catastrophe fatigue.” However, people involved in “organized religion” have their own demographic and financial issues to face, these days.
Meanwhile, let me note one other crushing reality in the Escher essay (trust me, there are many others).
But no matter what is causing autism, one thing is unequivocally true. We are woefully unprepared for the mounting demand for adult autism services. While revisionist histories have preached that autism is natural neurodiversity that has always been here but we somehow never noticed it, in the real world the numbers of disabled autistic adults in need of lifespan care are swelling, and fast. And where are the options? If autism has always been around and in these numbers, surely we would see the legacy of programs and housing services all around us. But we don’t. We must now invent a very complex and costly future for our loved ones. Because autism parents like me — we won’t live forever.
Who will care for autism patients then? What will that cost?
Paying staff — who, by the way, are increasingly hard to find — to fill the necessary care and supervision roles costs anywhere from $50,000 to $1 million per year, such as this example where even $440,000 per year for one young man was insufficient. Now multiply that by the growing caseloads and the specter of aging parents, and you can see we face a Mount Everest of a social services crisis, one that will cost us many hundreds of billions of dollars a year, and honestly, likely much much more than that.
The colossal financial toll hardly means we should turn away from the problem. To the contrary, it’s never been more important to have a clear-eyed view of autism’s readily observable realities and to engage in frank discourse about the future…
That’s enough for now. Read it all.
But let me ask a few questions that will — in Memo style — point to the religion-beat stories that will need to be written.
Why religious questions, other than that “theodicy” hook? You see, in America, religious institutions are one of the places that ordinary people turn for help, especially when the Powers That Be in government reject their beliefs and the “ancient,” out of date practices of their faith.
Readers, how many of you:
* Have a child somewhere on the autism spectrum?
* Know someone with a child who has severe, “profound” autism symptoms?
* Have seen autism affect your own financial, medical and educational plans or those of their loved ones?
* Know people who have lost their faith, or have seen their children lose faith, because of the mental and spiritual pain caused by autism and other mental-health challenges?
More questions? By all means:
* What can churches do, in worship and education, to welcome families touched by autism? If churches have “praise” teams, why not “lament” teams?
* Will churches that offer day care ministries be able to include autistic children (and someday adults)?
* What will the leaders of religious schools do, since the vast majority of these institutions, at all grade levels, (a) cannot afford to hire autism education specialists and (b) cannot, for doctrinal reasons, qualify for government dollars to provide this kind of care?
* What happens to religious believers who fear the impact of public school policies — think gender studies and trans issues — on the lives of their autistic children, who are up to six times more likely to face questions about gender and sexual identity (NPR report here)?
Oh, and clergy: Are you ready to preach sermons at funerals for church members with autism who are accidentally killed by actions linked to their symptoms?
Any religion ghosts in this piece at The Free Press? I think so.
Enjoy the podcast, if “enjoy” is the right word, and pass it along to others.
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