On Being Weary and Wary of ‘Awareness’

As this is a very personal statement, I think it best to post my latest op-ed written for the Jewish Standard myself. It was published in their April 28th issue, the title of the piece is On Being Weary and Wary of ‘Awareness’ and it addresses an issue that particularly hits home here in Bergen County, and throughout Northern New Jersey, as we are ground zero for autism:

April is Autism Awareness Month. As we are close to the end of the month, chances are that you’ve already seen or heard that statement.

So let me ask you: Are you more aware of autism now than you were at the beginning of the month? And what do we mean by this vague thing we call “awareness” anyway?

I looked online and found a “Cause/Awareness Monthly Calendar,” which confirmed my suspicions that almost every month of the year has multiple causes assigned to it. April has six listings, including Parkinson’s Disease Awareness Month and Sexual Assault Awareness Month. If there’s a cause out there that does not emphasize the goal of awareness, I have yet to come across it.

And yet I don’t see much in the way of assessment of this goal. How is awareness measured? Who measures it? How are the results distributed? I believe that awareness actually refers to attention, which is the basic currency of our electronically mediated environment. The primary question is: Is the cause in question getting enough attention from the news media, the entertainment media, and our social media? And secondarily, are the audiences and participants paying enough attention to these messages?

My daughter turned 21 this winter. When she was 2½ years old, she was diagnosed with autism. Looking back some 18 years ago, I know that what we call autism awareness was not very widespread, not even here in northern New Jersey, where there are the largest numbers and the greatest concentration of children with autism in the United States.

Back then, most estimates ranged from 1 in 1,000 to 1 in 500 children with autism nationwide. Increased awareness coincided with increased incidence, and now the estimates range between 1 in 45 and 1 in 68. And given the higher numbers in our region, this means that chances are you know someone with autism, or someone with a family member who has autism.

As the numbers grew, autism advocates began to call it an epidemic. Specifically, they referred to the epidemic of childhood autism. And it was an epidemic that affected families from all walks of life, from every income bracket and socioeconomic status, as well as every race, ethnicity, and religion.

A major turning point in autism awareness came when a grandson of Bob Wright was diagnosed with autism. Wright was the CEO of NBC at the time, and he and his wife, the late Suzanne Wright, founded Autism Speaks in 2005. Through his influence, autism suddenly received much more attention in the news and entertainment media than it ever had before.

It is worth asking ourselves why social problems only receive attention when the rich, the famous, and the powerful are touched by them, when the problem is experienced by someone close to a media professional or politician. Of course we are grateful when someone with a public platform finally speaks out. But why do awareness and attention have to depend on a contemporary variation on noblesse oblige?

And again, what is “awareness” all about? It is certainly a far cry from understanding.

I recently spoke with a friend and colleague whose son, about 10 years older than my daughter, also has autism. And we talked about the fact that our children will never really grow up, be able to live independently, have their own place, hold a normal job, marry, or raise children. About how much they depend on us and continue to depend on us. And about how uncertain their future is as we grow older, grow less and less able to care for them, and eventually will become unable to provide them with a home and necessary supervision.

We talked about what will happen to them when we’re gone.

It is so very hard for us to watch the parents of typical children celebrate the usual rites of passage and talk with mixed feelings about becoming empty nesters, knowing that fate has something else in store for us. Our special needs children require so much more of their parents than typical children as they’re growing up, and their special needs do not magically disappear when they become adults. The pressure never lets up, and it never goes away.

Awareness? Feh! Let’s face it, if you don’t live it, you just don’t understand, just can’t understand, not really. Not fully. So forgive me if I find all this talk about awareness to be awfully shallow, promoting the illusion that something real is happening merely by calling attention to causes on our news, entertainment, and social media.

I remember when Ronald Reagan was elected president, budgets were cut, policies were changed, and all of a sudden we saw schizophrenic individuals who previously had been institutionalized winding up on the streets, homeless and helpless, unable to take care of themselves. It was a shonda, a national disgrace.

Now think this through with me. For the past two decades, we’ve been made aware that there is an epidemic of childhood autism, with numbers steadily increasing. And be aware that there is no cure for autism. So now, be aware that we are facing an epidemic of adults with autism. And let me ask you, are you aware of what is being done to deal with this ticking social time bomb?

Nothing.

Local school districts are required to provide people with autism with an appropriate education until they age out after their 21st birthdays. After that, services are limited, if any exist at all. And for all but the most severe and violent individuals, we parents will try our best to take care of our children for as long as we are physically and psychically able.

How much longer do you think that will be?

We could have begun to prepare for the problem when Barack Obama was elected president. He had the right outlook. But the economy had just crashed under George W. Bush, Obama understandably was preoccupied with recovery from recession and with affordable healthcare, and he was faced with an obstructionist Congress for most of his tenure. Now that we have a Republican president, House and Senate, our government is back to cutting social services, so I doubt we can expect any proactive measures in the near future.

No, in all probability nothing will happen until the time when the parents of adults with autism no longer are able to provide them with a home, and the streets again are flooded with homeless people helpless to take care of themselves. When that happens, in the not too distant future, awareness will become more than a matter of news reports, feel-good films and TV programs, and social media memes. Awareness will become a face-to- face reality, an embarrassment, a source of guilt for the more enlightened, a source of fear for others. And only then will the public demand action, and public officials respond in kind. That’s what happened with the schizophrenics on the streets back in the 1980s.

So what does awareness mean to you? I guess it means that you’re aware that it’s Autism Awareness Month. I guess that amounts to awareness of awareness. And maybe, maybe, if you’re really made aware, that can lead to being informed. Maybe.My guess is that how well informed you are about autism depends on how close you are to an actual person with autism. And even then, after all, being informed is a far cry from actual action.

So please forgive me for being weary and wary of awareness. But please be aware of what’s coming down the pike, and when it happens, be aware that you were warned about it. And be aware that it was a failure of understanding, compassion, and foresight, and above all political will, that caused the problem.

That is the kind of awareness that we need to get across right now, in this month of April.