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home : opinions : opinions June 27, 2017

4/4/2017 7:29:00 AM
The time is right now

As we have written about in past editions, a wave of autism is sweeping the nation and the world. It is, in a word, an epidemic, and to call it anything less would be dishonest.

It would be dishonest because in the span of just a little more than two decades, autism rates have risen from 1 child in 10,000 to 1 child in 68. That's the official number. A government survey of parents released in 2015 puts the number at 1 in 45 overall, and the government acknowledges that may well be the more accurate number because the official numbers record only those receiving medical or special education services.

What it all means is that about 2 percent of children living in the U.S. have autism.

Think about that. That's an astounding number, and it should be an alarming one.

True, better diagnosis explains some of it, but no one seriously believes anymore than the rapid rise of the disorder isn't real and isn't significant, and there's a raft of peer-reviewed studies backing that up.

Talk to parents and they will tell you the same. Talk to law enforcement and they will tell you the same. Talk to school administrators and they will tell you the same. Talk to special education teachers and they will tell you, too: This is different; this is happening; the wave is coming.

In the past, we have offered our firm - and we believe sound - opinions about the causes of autism, but that is not our point today. The question today is, What are we doing for those with autism who are already here?

Until recently, quite frankly, not very much, unless you belonged to a group of families directly affected by ASD. Elsewhere, in the national media and in government press conferences, there has been an amazing lack of urgency about the need to confront the challenges of educating children with autism.

And that education must be intensive if these children are to learn, are to communicate, and are ultimately to integrate and function in their larger communities.

The attitude has been quite the opposite, in fact, as officials and broadcasters have seemed to go out of their way to assure the public there is no crisis - nothing to see here, move on along. That's simply not a rational attitude, and you can bet that if over 25 years about 2 percent of our youngest children developed blindness or a certain crippling form of cancer, there would be a call to arms and an immediate government effort to tackle the problem.

And so, whatever the reason for the casual approach, local governments and local schools districts, and state governments, and, yes, the federal government have all acted accordingly and failed to provide adequate funding for the educational services that children with autism so desperately need to lead productive lives.

There's a lot of political point-making these days about the special-education intentions of the Trump administration, and the fears might well turn out to be true, but, as Troy Flint of the California School Boards Association said, the federal government has been "delinquent on special education" for years.

In 1975, the Individuals with Disabilities Education Act committed the federal government to funding 40 percent of special-education costs, but the federal government has never forked over more than 18.5 percent, and the federal budget for special education allocated fewer dollars in 2014 than in 2012, even as the special education numbers were ticking ever upward.

Times are changing, thankfully, as those teachers, administrators, law enforcement officers, and parents makes their cases. The sheer numbers of individuals with autism, both adults and children, are making this new awareness happen; after a while the reality of a public health crisis simply overwhelms official pronouncements and soothing headlines.

For, as one official at Lionsgate Academy, the specialized autism school in Minnesota, told us, for most people now, there's no more than 2 degrees of separation between yourself and someone with autism. In other words, autism is no longer something you read about or hear about on the news; it's next door, if not in your own house.

The arrival of characters with autism in pop culture, such as in Power Rangers and Sesame Street, are also signals the nation is becoming aware, and is ready for a solution.

Fortunately, largely because of determined parents over the past 20 years, we know what a big part of that solution is. It is, as autism education pioneer Melanie Schaffran tells us in today's paper, the right therapy in the right educational setting.

That might well be in a mainstream setting in a general classroom, but for vast numbers of children with autism, it is not, at least not in the beginning. They simply do not and cannot process information or learn in the same way as neurotypical children, or, for that matter, as children with other disabilities do.

For these children, it means a specialized environment, or school, that emphasizes individual attention, allows students to make their own assignment choices within reason and specific boundaries, that integrates basic independent living skills into each class goal, that minimizes visual overload in the school environment, and allows students to learn at their own pace with a curriculum and program designed around their unique needs, strengths, and weaknesses.

Fortunately, our parental pioneers who have already built schools and given us the models for future success have served us all well, and to that a grateful nation should say thank you.

We have written before about the great strides Lionsgate has made in educating children with autism; we have seen with our own eyes as children locked within themselves and unable to communicate have, after their time at Lionsgate, taken the stage in lead roles in school plays, and become school project leaders, and even tour leaders for community groups.

In today's paper, we tell the story of Devereux CARES, a trailblazing school in New York state established more than 20 years ago and whose success continues today. There, many students more severely on the spectrum have also responded, learned, graduated and taken productive and enterprising jobs in their communities.

The models work. The right therapies in the right settings, they work, as Schaffran says. And today parents and communities around the nation are following in their footsteps, opening schools across the national landscape to give children with autism the opportunities they need for productive and satisfying lives.

The schools all have pretty much two things in common: determined parents driving the mission, and the commitment of their various communities, through foundations and fundraising, to have skin in the game.

What has only slowly come around, with some notable exceptions, is public funding, which in some cases has been forced by the courts and in others has still not materialized.

The time is now for that funding. The truth is, special education funding is going to have to be increased dramatically, whether it is spent on inclusion or on specialized schools and therapies, or, as preferred, where both are options.

Society is going to pay up front in education or it is going to pay on the back end with increased government services. The only difference is, there's more lost lives and lost productivity if we pay on the back end.

Already, it is estimated that the lifetime cost for a person with autism averages $2.4 million with intellectual disability and $1.4 million without one. And an estimated 40 percent of individuals with autism also have intellectual disability. That comes to $236 billion a year.

As Melanie Schaffran reminds us, the right therapies have emotional and human impact, but they have a fiscal impact, too.

"This is going to affect the financial state of states and municipalities and our country over decades to come, if we have kids who will then become adults who have no capability of being productive members of society," she said.

And so the message today for policymakers is clear. As Schaffran said: "This, this is where we start."

Indeed, this is where we start, and the time is right now.





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