We love autistic children - until they grow up

The two men on the bus that day in Caldwell, N.J., could have just let it go when the passenger sitting in front of them suddenly started rocking hard in his seat, flipping his fingers in front of his eyes and making strange sounds to himself.

But they didn’t.

Instead, as an eyewitness to the scene told us, they went after him. Verbally. One came out with an aggressive, “Hey buddy, cool it!”

The second leaned forward, and raised his voice. Hey man! “What’s your problem, man?”

The answer to the question was only partly that the solo rider, a 17-year-old, had autism, and could not speak. In fact, though, his “problem,” in that moment, was mainly the two men themselves, whose response to him was no doubt compounded by the fact that the teen, whose name was Nick, was already tall, strong, and stubble-bearded, more an adult than a child.

Society has never shown much compassion toward grownups diagnosed with autism.

Autism community angered by Mesa police shooting of transgender man in viral video

Falling off the cliff

Between now and 2026, some 500,000 younger Americans with the diagnosis will cross into adulthood, set at age 21.

Some will be capable of living fully independent lives, but a significant percentage will need support that mostly does not exist — the kind that would allow people like Nick, with moderate and even severe impairment, to hold jobs, live someplace nice, and pursue, to the maximum extent possible, the kind of fulfilled life most of us want out of our adult years.

As is said in the autism community, 21 is when a lot of autistic people “fall off the cliff.”

MOM:What I learned from my special needs son's night in jail

This is despite how much our hearts have opened wide to a different group of autistic citizens — the children.

Today, compassion for kids on the spectrum is a nearly universal reflex. This is reflected in media depictions of the boys and girls as vulnerable, eager, sometimes beautiful and almost always cute. It is also seen in the way their visible participation in any community space— from restaurants to airplanes — is regarded as a triumph for all involved.

No question, nowadays we are all rooting for the kids.

The battle for acceptance of children on autism spectrum

In itself, this is a rather recent development, hard won by parents only during the last third of the last century, and still a work in progress in some settings and communities. But still, we have come a long way since the days when parents were under enormous social and professional pressure to keep their autistic children invisible – hidden at home, or locked away in institutions.

Key to the change in attitude was parents’ successful campaigns starting in the 1970s for legal mandates requiring public schools to educate their children, while addressing their specific challenges – challenges these same schools previously used to bar enrollment entirely.

Yes, this change cost money.

To give even a little language to one non-speaking autistic child, for example, can require a whole team of teachers working one-on-one with just a single child. But the presumed payoff is hard to begrudge, as the goal is raising each child’s chances for maximum self-sufficiency, and fulfillment, in their adult futures.

Then the cliff happens

But then, just as that future arrives, the cliff happens.

School-funded support – all that work and investment – ceases on every student’s 21st birthday. That is when many of these same individuals find themselves, as in earlier generations, once again invisible. They’re home with their parents, with nothing to do; or bivouacked in small group homes, watching TV, with no say in who they live with, when they go out, or what they eat. All the aspirations for something better than that – employment, independent living, self-determination – would require continuing support for many of these adults, at or near the same level of intensity delivered during the school years.

But funding for that level of support – and it would be billions – is missing.

A pocket of excellence in Phoenix

To be sure, we are not without examples of communities which have come up with solutions.

In our just-published book, "In A Different Key: The Story of Autism," we refer to these as “pockets of excellence,” and include among them the Southwest Autism Research and Resource Center, based in Phoenix (which we will have the pleasure of visiting in person next week).

SARRC’s commitment to backing autistic people through the entire life span has caught the attention of educators and advocates all over the United States – particularly its programs that train individuals for success in the workplace. But nationwide, similar initiative are in short supply.

Viewpoints: Who will care for autistic adults?

Grownups with autism don't warm hearts

It’s just a fact: grownups with autism don’t warm hearts or inspire funding the way kids with autism do.

This is partly because all those years of awareness-raising campaigns put children front and center. Inadvertently, this taught the broader public to forget that autism is lifelong. Then, too, time robs autistic people of the best advocates many will likely know, their parents, who slow down with age, and then are gone.

There is also this inevitable truth about adults, put to us bluntly by a sympathetic psychologist friend: “They’re just aren’t cute anymore.”

He’s right.

Like everyone, autistic adults outgrow their childlike glow, becoming bigger, stronger, hairier, paunchier and – very important -- sexually mature. They have adult demands, and are assumed (not necessarily correctly) to be more set in their ways. This is one likely reason that professional schools offering training for the disability field are packed with motivated women and men who almost always talk about “someday working with kids” – but almost never the people those kids become.

But here is some good news. Compassion is free. And it matters materially.

Not only because compassion motivates policy and funding. But because, for adults aspiring to engage in everyday social settings, the odds for success — and even the boundary lines of disability — depend hugely on the reactions they get from everyone else out there.

Much as Braille elevator buttons and stairway ramps strip away limitations imposed by physical disabilities, so can a genuine welcome from the community, and slight adjustments by “the rest of us” to the ways people with autism relate socially go a long way toward neutralizing the perception that they don’t, and can’t, “fit in.”

Getting there is easy. It’s ordinary decency. It’s not being put off by someone who doesn’t make eye contact. Not jumping to conclusions that an unkempt man strolling down the sidewalk is dangerous. Rolling with it when the woman dining alone at a neighboring table rocks in her seat. Sizing up your strangely speaking neighbor as a potential friend, rather than making him the guy to avoid.

On that score, the men on the bus blew it.

But that was not the end of the story that day, as it was told to us. Soon after the gauntlet was thrown – Hey Buddy! What’s your problem – another passenger stood up. He did not know Nick personally, but had apparently seen him on the bus before, or at least he had seen autism before.

Here’s what he said: “What’s his problem? He’s got autism. So what’s your problem?

The two men, realizing that everyone else on the bus was suddenly on Nick’s side, went quiet.

In that moment, Nick’s place in the world grew just a little wider. It didn’t cost a dime.

John Donvan lives in Washington, DC and is a correspondent for ABC News, and host and moderator of the Intelligence Squared U.S. Debates, which are heard on public radio and by podcast. Caren Zucker lives in New Jersey and is a journalist and television producer. Both have family members with autism. 

Meet the authors

What: John Donovan and Caren Zucker will speak, answer questions and sign their book, "In A Different Key: The Story of Autism."

When: Thurs., Feb. 25. Reception with appetizers and cash bar from 6-7 p.m., followed by presentation.

Where: Changing Hands Bookstore, 300 W. Camelback Road, Phoenix.