Teaching in the Time of Autism: Tsunami warnings are blaring, but is anyone listening?
A wave of autistic children poised to overwhelm high schools
By Richard Moore
First in a series
Sometimes, when potential catastrophes and natural disasters of unimaginable scale are about to happen, and warnings are issued, people ignore them, simply because they are unimaginable, their reality so unthinkable and unbelievable that people cannot grasp that they can really happen.
The mind loves to give its soul safe harbor.
Time and again in human history, though, tragedies could have been averted or mitigated simply by being prepared, by knowing what was coming, by heeding warnings. Yet, on too many occasions, for reasons perhaps rooted deep within human nature, people looked the other way, or could not fathom that what they were seeing could be true, and paid the price.
Not seeing what they see
Take the 2004 Indian Ocean tsunami, for example.
On December 26, 2004, a horrible, gigantic tsunami crashed down upon the shores of 14 Asian and African nations, causing untold horror, destruction, and death. More than 230,000 people were killed, 500,000 were injured, and 1.7 million were left homeless in what became one of the deadliest natural disasters in history.
A 9.1-magnitude megathrust earthquake in the Indian Ocean had generated the towering seismic sea wave, which raced across the ocean at 500 mph, fueled by a frenetic force of energy unleashed by a fissured, buckling earth that packed the power of 475 megatons of TNT, or the equivalent of 23,000 Nagasaki bombs.
Destruction was assured, but sad to say, it turned out to be so much worse than it had to be. That’s because, so many people, from experts to average citizens, could not believe it was really happening, and simply ignored warnings, or failed to give them in the first place.
Writing in The Los Angeles Times, Barbara Demick wrote that many experts in government and even in tsunami warning centers were blind to the threat even after the massive quake, unable to see what they saw in their seismic data, while “others saw it but were unable or unwilling to act.”
“Some officials would see the threat, but be ill-equipped to act,” she wrote. “Others would take no action for fear of being wrong or out of line. In at least one case — in India — air force officials received a desperate mayday, possibly in time to save thousands of lives, but never made it public. The wave would outrun them all.”
The Pacific Tsunami Warning Center sent out an alert about the earthquake, but at first emphasized that “no destructive tsunami threat exists.” Already, Demick reported, the tsunami had traveled 100 miles and was just about ready to claim its first victims.
What’s worse, seismic information, satellite images, and other data were available to governments worldwide roughly 30 minutes prior to the tsunami hitting southern Thailand, and, even after the waves hit there, warning centers had more than an hour to alert India, Bangladesh and the Maldives, but didn’t, officials say.
In Bangkok, officials had seen a warning but thought it probably was a false alarm and didn’t want to scare people on the beach and in shoreside communities, all in the path of the water.
People enjoying the beaches were similarly unaware of what was coming to claim them, though they too had forewarning from the ocean itself. When water rushes back into the ocean after a wave, it presages another wave, and when this water raced backward to a distance no one had ever seen before, leaving boats and fish stranded, it was a sure sign of a massive wave, or waves.
Instead of fleeing, beachgoers calmly walked out to the exposed ocean floor to pick up stranded fish and take photos.
As bad as the lack of alarms were, as bad as the neglect of warnings that were issued, even worse is that such a catastrophe had been predicted for years. Smith Thammasaroj, the chief of Thailand’s meteorological department, had warned of a deadly tsunami since 1998 and had constantly called for education, early warning systems, and preparedness, but to no avail; he was dismissed as a foolish prophet of doom.
Crises within the crisis
A tsunami doesn’t have to be made of water, of course, it can encompass any number of other disasters, including health epidemics. The 1918 flu pandemic killed more than 5 million people worldwide. Cholera ravaged the world, and this nation’s 20th-century polio epidemic was heartless in the way it maimed innocent and otherwise healthy young people.
Lives were ruined as seismic waves of sickness swept over the nation and the world.
Now, in the United States and around the globe, a powerful earthquake of arguable origin has set off yet another health tsunami, which at this very moment is racing across the ocean of our lives, already affecting millions and millions, with millions more still in its path.
This time it is a neurological disorder called autism, or Autism Spectrum Disorder, which impedes social interaction, verbal and nonverbal communication, and often produces repetitive behaviors. Many of its victims are highly dysfunctional and will remain on government support for all or most of their lives, effectively imprisoned at home or in residential care settings.
According to a 2013 study led by Kristy Anderson of UW-Madison, only 16.6 percent of young adults with ASD lived independently since leaving high school, while 87 percent lived at some point with their parents or guardian.
For many, too, those lives will be short lives, for new studies released reveal yet another calamity within the unfolding epidemic: a crisis of mortality. A 2015 study conducted at Sweden’s Karolinska Institutet indicates that the average age of death for people with ASD is 54 compared with 70 for people without. Even worse, people with low-functioning ASD on average died before they reach 40, at 39.5 years, while autistic adults with no intellectual disability died an average of 12 years earlier than the typical population.
Suicide and epilepsy are leading causes of death, the study stated.
It might seem overwrought to compare the autism epidemic to an oceanic tsunami, but just the reverse might be true. It is probable that it is overwrought to compare the Indian Ocean tragedy to the autism crisis today, for, in the end, autism’s victims are likely to number many more than that disaster, even in mortality.
In fact it already is. For millions, the impairment is real. The broken families are real. The pain is real. The death is and will be real. The tsunami is upon us. It has crashed into the hearts and homes of families everywhere — perhaps your own family, or your relatives, your friends, your neighbors.
And, as people with autism grow older, the tsunami is headed elsewhere. It is crashing against the breakers of law enforcement; it is pounding against the shores of mental-health and special services programs; it is roaring through the economy and affecting employment levels and employers. It is rippling now through the lower grades of schools, and, ominously, the current is stronger, the tides are higher, and the waves more towering with every new school year.
Staying on the beach
The facts of this tsunami can no longer be denied. The tsunami is coming.
While the official national count of those diagnosed with Autism Spectrum Disorder remained stationary this year at 1 in 68 children (in Wisconsin, that number jumped from 1 in 102 children in 2014 to 1 in 92 in 2016), most experts believe the official number is an undercount. According to a survey by the Centers for Disease Control, school districts and parents are classifying children as autistic in far higher numbers, now at about 1 in 45.
Both statistical and anecdotal evidence for the nations’ student populations also suggests the rate continues to grow, and especially in lower grades.
Nationally, the number of school-age students covered under the federal Disabilities Education Act has experienced dramatic growth since 2011, and now includes nearly 6 million children. A federal Department of Education count of students in all states shows the increase to have been driven by autism. Nationwide, the number of 6- to 21-year-old students classified as autistic rose 165 percent between the 2005–06 and 2014–15 school years, the DOE reports.
On the state level, a report this summer showed that the ASD-diagnosed population in California public schools increased by 7 percent last year alone, and by 17 percent in kindergarten ages. According to the California Department of Education, 97,000 students in that state are now diagnosed with ASD, a seven-fold increase since 2001.
Indiana is also typical of what virtually all states are seeing: In 2010, the number of ASD children was 11,514; in 2011, the count was 12,226; in 2012, 13,020; in 2013, 13,675; in 2014, 14,179; and in 2015, the count was 15,291. Between 2010 and 2015, the increase was 32 percent.
The numbers speak to urgency, and yet the reaction for many years — and in many quarters to this day — has often been akin to the lamentable reactions officials gave to warnings about the Indian Ocean tsunami.
For years, those who warned of an autism epidemic have been called crackpots and worse. There was no epidemic, government officials proclaimed in language reminiscent of the warnings issued after the Indian Ocean earthquake: “No destructive threat exists.”
Even as the diagnoses have charged upward, many officials remained blind to the reality that raced along like a 500-mph tsunami before them. They could not see what they saw in the data. It’s all better diagnosis and awareness, they said. Nothing to see here. Move on along.
Parents knew better, of course, and were trying to call people to higher ground in various forums, like the website Age of Autism, or the AutismOne conference that attracts thousands of parents every year, but the official proclamation remained the same: No threat exists; stay on the beach.
Slowly, public perception has turned. Though there remains an awareness gap, especially among policy makers, most people now understand that the U.S. and the world are gripped in an autism crisis, and that the prevalence rates are real.
For one thing, the numbers and the growth are just too staggering. In 1992, only 19 out of every 10,000 children had ASD; it is now one in 68, and likely more than that. To present those staggering numbers in another horrible way, according to the CDC in 2014, about 1 percent of the world’s population has autism spectrum disorder.
A 2014 study by Ariane V. S. Buescher in JAMA Pediatrics put the number of Americans living with ASD at more than 3.5 million; what’s more, prevalence has increased by 6–15 percent each year from 2002 to 2010, the CDC states, and since then continues to march along in double digits.
To be sure, even today some members of the scientific community continue to insist that the increased diagnostic counts can be attributed to diagnostic substitution. In other words, there is no increase, or very little; doctors simply substitute an autism diagnosis for conditions they used to label as mental retardation or childhood schizophrenia or intellectual disability.
That line of reasoning has always walked along a frayed tightrope. To be sure, there’s no question that better diagnosis and awareness, especially in the early years of the statistical climb, helped explain rising rates. That’s only logical and reasonable.
What was not reasonable was to make a long leap of faith and conclude the entire increase could be attributed to better diagnosis and awareness. While many say that parents began leaping to an autistic label for their children, in reality most studies show that many parents resist an autism diagnosis, at least at first.
An old saying posits that, in most matters, the truth is somewhere in the middle, and that’s the plausible conclusion here: It stretches credulity to think we could move from a rate of 19 in 10,000 to one in 68 by diagnosis substitution alone. The claim simply does not withstand logical scrutiny.
That is to say, the headlines about autism and its causes and increases have been blaring for well more than a decade now — and the circulation of the debate has pulsed even more intensely in medical journals over that same period. Is it plausible to believe that multitudes of clinicians and pediatricians are only now becoming aware of autism, and only now starting to make diagnoses?
The tsunami races on, but in data and disease control centers, some experts see only what they want to see.
Scientific evidence, street cred
Beyond logic, evidence in other scientific studies and on the street underscores the reality of the dramatic increase. In her work, for example, Dr. Irva Hertz-Picciotto, who heads the Division of Environmental and Occupational Health at UC-Davis, looked at the diagnostic substitution explanation and concluded that it explained only a quarter to a third of autism cases.
Even studies criticized as biased and flawed could not make autism vanish in their computations. A 2015 Penn State study tried to explain away a 10-year rise of 331 percent in autism diagnoses for special education students as the product of declining intellectual disability diagnoses among that population, but even if 100 percent of the latter’s decline was considered to have resulted in a substitute diagnosis of autism — which is almost certainly not the case — autism would still have risen by more than 100 percent.
Clinicians, too, are seeing real increases: children with disorders and behaviors and symptoms completely different from what they had seen in the past and different from the conditions many assume to be the real culprits.
Here’s how Sally Rogers, a professor of psychiatry and behavioral sciences at the MIND Institute in Sacramento, put it in an interview with NPR in 2011:
“In my experience, the number of children who have autism has increased enormously. I remember 30 years ago when I started working with young children with autism in a real focused way. And I remember when I saw the first child in 1982, a 2-year-old with autism. Two years later I saw another. Three years later I saw another. And now in the last two years, we’ve recruited 50, 70 2-year-olds with autism just here in this city. It’s a phenomenal change from a clinician’s experience in the prevalence of autism.”
Teachers and school administrators, too, say the increase is real — like night and day in the classrooms, and in both urban and rural areas.
That’s certainly the case in the Lakeland area, one of the state’s most sparsely populated regions.
“When you look at the entire Lakeland area, when you look at the four elementary school districts along with Lakeland Union High School, we’re definitely seeing our autism population rise,” Jim Ellis, the district administrator of the area’s Minocqua School District, said this year. “I think we’re ahead of the national average.”
What’s more, he said, it’s a larger population than official statistics might indicate.
“I also think that, speaking on behalf of my school district, there could be some more students that are identified with autism, but sometimes parents have a difficult time accepting that label,” he said. “And that’s one of the things we’re doing — trying to work together as a partnership, as a community, as a school, and with families to make sure we get the right identification, and then explore some strategies about what we can do with students.”
Jim Bouché, the district administrator for Lakeland Union High School, agreed with that assessment.
“In my nine out of 11 years in Minnesota as a special education administrator, I saw the autistic numbers grow considerably in that area, and, since I have been here, the numbers have also continued to grow,” he said.
The schools: Are they prepared?
The question is, as the tsunami surge heads from the epicenter of younger grade levels to the shores of high schools, are the schools prepared?
It’s a critical question, for, beyond finding a way to curb ASD prevalence in the first place, schools are ground zero when it comes to public action to educate and prepare autistic children for adult life. Only the family is more important.
That’s because, in part, early intervention is critical in abating the worst outcomes of ASD, and education is vital to building those programs. The proper approach to autistic education in elementary and high school grades is also essential in putting the child on a path to good self esteem and mental health. And it is perhaps most important in enabling as many autistic people as possible to live independently in the outside world, in giving them the executive function skills to work and to buy groceries, and even to tell time.
Again, are the schools prepared for their roles?
The simple answer is, some are; most aren’t. The sheer numbers headed their way and the funding needed to educate them — the tab can run as high as $60,000 or more for a child with ASD — keep school administrators awake at night.
In Wisconsin, statewide in 1992–93, for example, 203 students received special-education services with autism as a primary disability. That translated into an .02 percent prevalence rate out of 976,794 students. Ten years later, in 2002–03, 3,079 children with ASD received such services, for a prevalence rate of .30 percent.
In 2015–16, 11,470 children with autism received special education services with ASD as a primary disability, or a prevalence rate of 1.16 percent out of a total student population of 992,986. That’s about a 1,400-percent growth in the prevalence rate between 1992 and 2002, and a growth rate of 286 percent in the 13 years since 2002.
Those number represent a staggering growth in the number of autistic students as a proportion of the total disabilities population, which just a decade ago was under 4 percent. By primary disability, those with ASD now compose 10 percent of the disability population between ages 6 and 21.
And that doesn’t tell the whole story. Of those 11,470 students, about 7,000 are not yet in high school. That suggests the high school autism population could double in the next few years.
Breaking it down by strict age groups in 2015–16, there were 4,685 12–17-year-old students with ASD in Wisconsin — as many as a fourth of those may be on the high-school doorstep — but 5,043 students were aged 6–11. And barely 20 percent of all ASD students between the ages of 6 and 21 were between the ages of 16–21, far below their proportion to the population.
The tsunami looms.
The numbers in the Lakeland area are pronounced as well. In 2015–16, according to Lakeland Area Consortium disability data (AVW, LdF, LUHS, MHLT and North Lakeland), 34 students, or 8.9 percent of the disability population, have ASD as a primary disability, while 56 students received autism spectrum services (an important number because many children with another primary disability classification are autistic, too, and vice versa).
In a small population area such as Lakeland, that’s consequential, but it doesn’t tell the whole story. Of those 56 students receiving autism services in 2015–16, only 15 were at LUHS. Forty-one were in the lower grade feeder schools, and public school leaders worry about the coming rise in population.
A more precise way to measure the data — and to get a sense of the wave poised to surge into the high schools — is to look at the number of children receiving autism services in the four grades directly preceding the four high-school years.
In Lakeland, for instance, 15 students received autism spectrum services in 2015–16, but in grades 5–8 the number was 23. That’s 54 percent more, and they are headed soon to LUHS.
Looking at primary disability data, the difference is even starker. The high school had 8 students with a primary ASD classification; in grades 5–8, the number was more than twice as high at 19.
Those numbers worries administrators like Bouché, who believes more options are needed for parents and educators alike.
“I’m concerned for our students and parents here in northern Wisconsin because I believe it is important to give options for students at every level of learning,” Bouché says.
Special education teachers worry no less.
For one thing, the sheer numbers could overwhelm them. For another, whatever the number, autistic children learn very differently, not only differently than neurotypical children but differently than other special needs children.
That raises a host of questions: Will the surge of ASD students disrupt the education of neurotypical children and inhibit their development, while failing to improve or even reinforcing deficits in the social, functional, and cognitive capabilities of ASD students?
As for the regular teachers who handle a neurotypical class well, and the special-education teachers who perform brilliantly among other special-needs populations, are they equally equipped and ready to abandon traditional classroom plans for the alternative teaching methods autism often requires?
Finally, how will society pay for it all, and who in society will foot the bill? How will the funding be equitably distributed so that the best and the brightest of neurotypical students aren’t penalized? Who will pay the tab for those leaving high school but who cannot function in the larger world? Who will take care of them?
All those questions must be answered quickly, perhaps most quickly and most vitally in our schools, where teaching in the time of autism will be one of America’s greatest challenges of the next few decades.
For the tsunami is coming. It just won’t wait. And, if the state doesn’t act, the wave will outrun us all.
Next: What’s happening in the classrooms?