Theft

When children with autism, like my son Luke, move into adulthood, they leave a world dedicated to their care and well being to face a new reality that merely attempts to tolerate them. The politics of autism before the age of 22 are all about providing resources and activities designed to meet the group’s developmental requirements. The politics of life after 22 abruptly changes to dealing with the fact that every child you wanted to help becomes an adult society is forced to accommodate—most of whom need assistance more than ever. America did alright by children with autism. The adults they became? Not so much. 

Autism is a spectrum disorder, which means there is a wide range in how the condition presents in those it affects. From fully functional to being unable to use a bathroom or even feed oneself, Autism runs the full gamut. But this much is certain: for every success story about a child with autism successfully transitioning to productive adulthood there are several who will need constant supervision their entire lives. The only thing that changes for them is the amount of community resources their caregivers receive.  That is a fact. 

Luke is considered about the middle of the spectrum. He is verbal but not conversational. That means he can speak fluently and let you know any basic need or desire he has, but he is near fully incapable of conversation or detailing anything that is bothering him. He refuses to discuss any health or emotional malady he may suffer from, instead plaintively reassuring us that “I’m fine!” Of course, this is a tremendous problem, as everything becomes a guessing game, and resolution becomes a hit or miss slog. Otherwise innocuous conditions—such as a sore throat or constipation—go unaddressed and escalate from nuisance to substantial concern. 

Despite his autism, Luke was generally a very happy child, largely because his mother is one-of-kind. Sue made certain his days were filled with structure and activity. Fairfax County schools were, for the most part, all in on making sure 8:00AM to 3:00 PM supplied a support structure Luke could rely on. His routines were his lifeblood, and everything started with a school bus showing up at his front door. 

They call what happens to kids like Luke—when they turn 22 and suddenly most things they counted on disappear— “falling off the cliff.” For Luke nothing hurt more than when that school bus stopped coming. Suddenly there was a big, empty, awful void in his life. What organized his existence and provided the meaning necessary to look forward was no longer there; and no matter how hard we struggle to replace it, moving on is very difficult for him to do. He’s still trying. 

Now 25 and preyed upon by a condition that mimics seizures and baffles neurologists past their certainty it is related to OCD and not physiological, Luke heroically plows forward. But now his days have morphed into a constant battle against anxiety and frustration. He is preoccupied with trying to replace that bus, fill that hole. Some days he can, some days he cannot.

The worst episodes can be violent, although he isn’t attempting to hurt anybody. For his entire childhood we were successful at keeping him off any psychotropic medications. While many of his peers gained weight and became sluggish, Luke matured into a physical specimen with boundless energy. But now we have no choice… it’s Ativan or crisis once he goes dark. And no matter how many good days he can string together, one bad one is devastating  and feels like we are back where we started. 

Central to our hopes that Luke will find his way is the adult occupational program Sue was finally able to enroll him in. Five days a week, 9AM to 3PM he is deployed with some of his oldest friends to different local businesses who participate. With prompting and guidance Luke is a great worker, but we are under no illusions about his limitations. Without near constant supervision he loses focus and becomes more distraction than asset. Yet and still, he now has a new routine that he can rely on. It’s not the school bus, but it offers the central organization he must have to look ahead rather than dwell on behind. Without it he would be lost… we would be lost. 

Most all programs for disabled adults work on shoestring budgets that rely heavily on Medicaid funding. During the best of times they are all out to maintain staff levels, pay rent, and cover the myriad of expenses serving a group of fully reliant individuals requires. Everything seems hand-to-mouth with near zero room for error. Now they face legislation fashioned to close their doors. 

The Congressional Budget Office estimates that Trump’s Big Beautiful Bill (BBB), while adding near $4 trillion to the federal debt over ten years, mostly due to tax cuts for the upper brackets, will also slash Medicaid by $1 trillion over the same period. That means, based on the federal contribution to the 2023 Medicaid Budget of $614 billion, roughly 15 percent of crucial funding will be lost. States must now either make up the difference out of their end, something that likely would require always unpopular tax increases, or force programs to be eliminated. 

It is almost impossible these days to bring up the subject of autism with a new acquaintance and not have them immediately reply back about their own experience with a family member or close friend. Indeed, It is no longer hyperbole to say autism impacts near everyone to some degree. Yet the MAGA (formerly Republican) Party is desperately trying to pass a thousand pages of gratuitous cruelty that all agree will devastate programs few in this community can do without. 

For months now, both in the House and Senate, advocates of the disabled have pleaded with lawmakers by pinpointing exactly how the neediest will suffer should the bill become law. They have been met with indifference and disdain, even arrested for their trouble. After all, MAGA cultists believe empathy is synonymous with “woke,” compassion a liberal disorder. 

Incredibly, MAGA Senators were not satisfied with the amount cut in the House version of the BBB. Florida Senator Rick Scott – who as CEO of Columbia/CHA oversaw such extensive Medicare and Medicaid impropriety that the company eventually conceded to the Department of Justice in 2002 and entered into what was then the largest fraud settlement in U.S. history – thought $1 trillion in cuts too timid, and sought another $319 billion. Scott claimed he was just trying to preserve the program for “those who truly need it.”

American democracy has from the start been based on enlightened self-interest. Understanding that some things you support or oppose don’t directly impact you, but are instead part of a balance of competing interests pluralism demands, is how America has prospered since its inception. MAGA nihilism is assaulting that proposition every hour now in both chambers of Congress and the White House. 

The certain passage of the BBB will codify American oligarchy at the expense of its neediest citizens. More than a despicably regressive redistribution of resources, it provides the clearest indication to date that MAGA Party members will endanger their own electoral futures backing what they know will be reviled in cowardly subservience to Trump and his donor class. Or perhaps it demonstrates most of them believe free and fair elections will no longer burden them. Either way, all of us without chauffeurs and security details will suffer. Whether white or black, MAGA cultist or otherwise, countless families across America are about to discover their school buses won’t be coming by anytime soon. BC