RICHARD MOORE

AMERICAN INVESTIGATOR REPORTING THE CASE FOR CONSTITUTIONAL INTEGRITY

Autism

A special note

Teaching in the Time of Autism

Dear readers and supporters: 


Due to ongoing demand and urging, we are launching a Teaching in the Time of Autism page. This page will feature much of my writing — and other guest writing — on autism over the past seven years, as well as new writing. 


While some of it will delve into causes, the focus of the page is the growth of the autism epidemic, whatever the cause, and efforts to educate children with the disorder. Can public schools handle the coming wave? What are options and alternatives? What is working out there, and what is not? We hope you enjoy the page, and I welcome any comments and suggestions you may have.


Thanks for reading

Richard

The classroom challenge: When children learn differently

Different from neurotypical children; different from other disability populations
Posted by Richard Moore Sept. 9, 2016

Beyond the controversies about the causes of autism — a critical debate because that is ultimately the key to stopping the epidemic — there are the children for whom the cause has become academic.

It is academic because they are the children who already have Autism Spectrum Disorder.

Or, more accurately, they are the children and they are the young adults, those autistic individuals who are coming of age in the time of autism. While preventing future generations from being assaulted by these disorders must be a national mission, ASD advocates say, so too must the nation make it its mission to serve those on the spectrum now.

And that latter mission is far from academic, for without the proper help, without the appropriate education and services, many if not most ASD individuals will never be able to work or live independently. Only 17 percent manage to live on their own in the years after high school, and unemployment numbers are just as bad. 

According to a 2015 report from Drexel University, “National Autism Indicators Report: Transition into Young Adulthood,” by Anne Roux and colleagues, young adults on the autism spectrum have the lowest rate of employment among disability groups, with only 58 percent working during their early 20s compared to more than 90-percent employment for young adults with emotional disturbance, speech impairment, or a learning disability, and 74-percent employment for those with intellectual disability.

All that rings up high and unacceptable personal costs for so many families, but it also sets back society in terms of lost productivity and unrealized creative contributions. It tags taxpayers with the expenses of lifetime care and services.

A 2015 study estimated the economic burden of autism to be $268 billion in annual direct medical, direct non-medical, and productivity costs in 2015, with those costs expected to rise to $461 billion in 2025. Yet federal investment in autism research fell from $288.1 million in 2010 to $245 million in 2012, according to a 2015 Government Accountability Office report, and, while research spending has rebounded slightly since then, research spending by per capita diagnosis has declined.

As the ravages of war take talented members of a generation with its bullets, advocates say, so the ravages of autism are today taking valuable members of a younger but quickly aging generation, and in both cases society must pay a staggering bill.

For veterans, the culture has appropriate, necessary, and painful reminders of those lost in battle, symbols that serve as a call to action to honor those who died and to care for and restore the injured to productive and happy lives.

Unfortunately, on the battlefield known as the autism spectrum, no such national call to action exists for those already diagnosed. No national policy has emerged to defeat the enemy we call ASD, and no policymakers have stepped forward with a rallying cry to cope with what is already a national crisis in our schools.

With some notable exceptions, elected officials across the political spectrum have been missing in action when it comes to the autism spectrum.

There are advocates, to be sure, thousands and thousands in local communities and parents most of all, who have stepped into the void, believing surrender is not an option. Theirs has been the leading voices to find autism’s cause and to defeat the epidemic; they have also led the way in caring for and restoring autism’s injured to productive lives.

The good news is, intervention works for many, especially early intervention. By a large margin, parents report that occupational and speech therapy, applied behavioral analysis, and other evidence-based approaches work, along with social skills therapy. Dietary interventions produce results for many, too.

While what works for one might not for another — the broad range of the spectrum is one of the biggest difficulties in battling ASD — early intervention in the home and appropriate age-based intervention in schools is significantly boosting the numbers of ASD students who can function independently in society.

The problem is, not enough resources are being devoted to reach significant numbers of those who need the help, and, when there are resources, too few options among the various educational approaches are available. And so while the ongoing and future social costs of the epidemic demand long-term action, the existence and growth of proven successful intervention strategies and educational approaches make a call for immediate action ever more imperative. 

It is especially so as hundreds of thousands of ASD children reach school age in the next few years.

The classroom challenge
If ground zero is the home, the school door is only a step away.

And, as a wave of children with ASD enter those doors, the debate about how to educate them has grown proportionately and exponentially.
There are those who call for full mainstreaming, or inclusion. There are those who call for special schools. There are those who call for hybrid formulations and individualization. There are even those who call for special schools within mainstream schools.

No matter where one lands in that debate, the discussion proceeds from an underlying truth that informs the autism education discussion: Autistic children learn differently.

They learn differently than neurotypical children do. They learn differently than most special-needs students do, though often disabilities overlap and co-exist in what is known as comorbidity.

What that means is that, at the larger population level, individuals with ASD process, understand, and respond to information from the outside world — and from their own internal senses — differently than do other children, though individual differences exist. To be sure, all special needs children, regardless of their primary disability or comorbidity, learn somewhat differently, hence, the very idea of individualized education plans. 

But, at the more general population level, the differences between disabilities can be recognized, identified, and categorized, and those learning differences for ASD children are significant compared to other disability populations. 

That they learn so differently presents tremendous classroom challenges.

In a pioneering 1996 study, Gary B. Mesibov and Victoria Shea identified three major areas of traditional education that work for neurotypical children but that are ineffective for autistic children.

“Educating students with autism requires an understanding of the unique cognitive, social, sensory, and behavioral deficits that characterize this developmental disability,” the authors wrote. “These include limited and disordered language skills, unusual sensory processing, difficulty combining or integrating ideas, difficulty interpreting the underlying meaning or relationship of events they experience, problems processing multiple sensory stimuli, and resistance to unpredictability and change.”

Many autistic students with language deficits are unable to comprehend verbal explanations of material, for example, and students with autism have relatively poor imitation skills, which make it hard for them to imitate the behavior of their typically developing peers, the authors wrote.

Then, too, as the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders observes, a significant marker for identifying adolescents on the autism spectrum is the concentration on narrow areas of interest. That is to say, creating their own identity seems to be of utmost importance to students. 

Practically speaking, the research shows and classroom experience supports, autistic students who have no interest in a particular subject will often not engage in learning activities that use that particular subject. Thus, trying to teach an autistic child to read using a history book or a science book about the weather or some other scripted class plan may be futile if the child has no interest in those subjects.

Using books tailored to the child’s intense and narrow field of interest — a train book for a child focused intensely on trains — can help to solve the problem, but the multitude of individualized focuses poses yet another classroom challenge.

Action as well as thought
In a 2009 study by researchers at Kennedy Krieger Institute“Difference In The Way Children With Autism Learn New Behaviors Described,” published in the journal Nature Neuroscience, researchers examined patterns of movement as children with autism and typically developing children learned to control a novel tool. 

Their findings suggested that children with autism appear not only to process information differently when learning but to learn new actions differently than do typically developing children. As compared to typically developing peers, when learning new patterns of movement, children with autism relied much more on their own internal sense of body position, the researchers stated, rather than on visual information coming from the external world. 

What’s more, the researchers found that the greater the reliance on their body position, the greater the child’s impairment in social skills, motor skills, and imitation. The findings were important, the researchers stated, because they suggest that, in the appropriate educational setting, specific activities developed from the study’s knowledge could help reduce the deficits in autistic children.

“These findings can lead to important advances in methods for treating autism,” Dr. Stewart H. Mostofsky, study author and a pediatric neurologist in the Department of Developmental Cognitive Neurology at the Kennedy Krieger Institute, said. “Applying the knowledge gained in the current study, targeted interventions can be developed that enhance visuo-motor associations in children with autism as they learn new skills. If done early enough, this could help to improve development of motor, social and communicative skills in children with autism. Further, it could also improve their ability to understand social cues because the brain systems critical to forming internal models of behavior that guide our actions are also critical to developing an understanding of the meaning of those actions.”

The researchers also said the study provided support for observations from previous studies suggesting that autism may be associated with abnormalities in the wiring of the brain, and that might provide new insight into why autistic children have difficulty learning to interact with the world around them. 

“If the way their brain is wired is not allowing them to rely as much as typically developing children on external visual cues to guide behavior, they may have difficulty learning how to interact with other people and interpret the nature of other people’s actions,” Dr. Reza Shadmehr, senior study author and Professor of Biomedical Engineering and Neuroscience at the John Hopkins University School of Medicine, said.

And those aren’t the only cognitive hurdles that challenge children with ASD. For example, other research points to deficits in temporal processing whereby children with ASD have trouble both imagining the past and envisioning future changes to a current situation. Some cannot differentiate between past, present, and future.

Closely related is a difficulty in time perception, in which the individual with ASD does not understand that hours or extended periods of time have gone by. This often makes the person with ASD seem unresponsive or causes delay in responses that then appear to be without meaning or context.

Studies have also shown that some autistic children can’t view objects metaphorically (such as when a typically developing child might use an article of clothing to metaphorically represent an absent caregiver) and this inhibits both empathetic development and a sense of their own emotional well being within and as part of the outside world. As a result, these children cannot relate emotionally to their school work.

Profound anxiety
In addition to all the unique cognitive, social, sensory, and behavioral deficits that children with ASD face, extreme levels of anxiety tend to occur at a higher rate, compounding those deficits and often resulting in a complete withdrawal into the self, especially in classes where they are surrounded by typically developing children, research shows.

Indeed, while many ASD students display quite adequate executive skills functioning and are highly intelligent, anxiety can multiply social inadequacies to the point of complete detachment. And, says researcher Lisa Moore, writing about her research in a high-school setting with students with ASD characteristics, anxiety is rampant especially among that population group.

“Adolescents with high functioning ASDs are at higher risk, almost twice as high, for developing anxiety disorders as compared to the general pediatric population,” Moore wrote, citing established research. “Over time, the presence of anxiety combined with ASD, limited social supports, and difficulties in school, can lead to chronic psychiatric disorders.”

Other children with ASD are unable to process faces in social interactions — some think it is because these children over-concentrate on parts of the face rather than on the whole — which further inhibits social interaction and elevates levels of anxiety.

The bottom line is, the research indicates that extensive worry regarding social encounters compounds the core deficits of ASD, inhibits meaningful social relationships, and leads to a felt sense of isolation in social environments. Moore found that in her own classroom experience.

“The student participants of my research project were displaying a profound disconnect from their peers and, as I observed, were employing creative but negative coping mechanisms (e.g., hiding in the library or wood shop, skipping lunch, or clutching and manipulating objects) to adjust to the extreme stress of their school day.”

Anxiety adds exponentially to the classroom challenge.

Comparisons with other disabilities
Here’s another vexing challenge when the classroom and ASD intersect: The cognitive, motor, and social deficits found along the spectrum not only set many autistic kids apart from typically developing students but from nonautistic special-needs populations.

For example, just as with typically developing students, social rewards have been used with non-autistic special-needs populations with great success, as Bradley Witzel and Cecil Mercer put it in a 2003 study:

“The consensus within the analyses shows that not only can rewards be effective at achieving short-term outcomes, they can also help build intrinsic motivation in a student,” the authors wrote. “The need for extrinsic motivation increases for students with learning disabilities. Not only may the use of praise help these students develop an intrinsic purpose for a behavior, praise will also help them in the short term while they have difficulty maintaining and developing internal control.”

But, in their 1996 study, and in an August 2016 update, Mesibov and Shea say that’s not the case with autistic children.

“In our culture, we generally reward students’ achievements with social responses, such as praise, smiles, pats on the back, and other acts that communicate ‘I am proud of you,’” Mesibov and Shea wrote in August in “From Theoretical Understanding to Educational Practice.” “These acts depend on the ability of the student to decode the symbols of the teacher’s pleasure, and on the meaningfulness to the student of the teacher’s pride. But a student with autism may not understand the communicative intent of a smile, a sticker, a hug, etc. Or he may not find a teacher’s expressions of satisfaction to be relevant or meaningful.”

In a 2006 study, Avril V. Brereton and colleagues investigated the level and pattern of emotional and behavioral problems in young people with autism compared with children with intellectual disability. Comparing 381 young people with autism and a representative group of 581 Australian young people with intellectual disability aged 4-18 years, the researchers found that young people with autism were found to suffer from significantly higher levels of psychopathology — mental or behavioral disorders — than young people with ID. 

That, too, poses significant classroom challenges.

Yet another study, this one by Lawrence Bartak and colleagues, examined a sample of boys aged five to 10 with no demonstrable neurological dysfunction, hearing loss, or mental retardation but who had a severe developmental disorder of the understanding of spoken language. The researchers used standard psychological tests of cognitive, linguistic, and social behavior. 

Again, the results indicated significant differences between the ASD population and the non-ASD population.

“Results showed that within this group children diagnosed as autistic had a more deviant language development than non-autistic children, had a more severe comprehension defect, had a more extensive language disability (in that it involved several different modalities), and also showed a defect in the social usage of the language they possessed,” the researchers wrote.

In others words, the ability to articulate language, to understand language, and to use language socially was significantly more pronounced and different from those who had other language developmental disorders.

As D. V. M. Bishop of the University of Manchester wrote in referencing that study, Bartak’s work confirmed that “it is possible to have a severe receptive language disorder without necessarily being autistic, and thus indicated that the social and behavioral impairments of autistic children cannot be simply explained away as secondary to impaired understanding of spoken language.”

“In general, it is not helpful to treat specific developmental language disorder and autism as points on a continuum: most children with developmental language disorders have communication problems that are more circumscribed than those of autistic children, and which are not associated with any abnormalities of behavior or sociability,” Bishop wrote.

Thus, the astounding differences between even other language impairments makes autism unique in its general characteristics, and demanding of unique techniques in the classroom.
Next: Confronting the classroom challenges

Tsunami warnings are blaring, but is anyone listening?

A wave of autistic children poised to overwhelm high schools
Posted by Richard Moore September 1, 2016

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.

At LUHS, 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 18.

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?

In Minnesota, an innovative autism school soars

Lionsgate Academy awes families with “revolutionary” approach

Posted by Richard Moore
First published in The Lakeland Times

The very name Lionsgate Academy sounds exalted and exceptional, and, to those who have been touched by the growing wonders of the school, which specializes in educating students with autism spectrum disorders, that’s exactly the kind of experience the academy provides.

The school in Minnetonka, Minnesota, opened in 2008, the product of hard work and the vision of two couples with autistic children, with a mission to provide a gateway to independence and self determination for children on the spectrum. Operated as a public charter school for grades 7-12, the idea is to provide a transition-focused, personalized learning program for all students, while specializing in educating students with ASD.

Seventy-three percent of the students at Lionsgate have a primary diagnosis of ASD, while the rest have primary disorders that might include speech language impairment, learning disabled, ADHD, and fetal alcohol syndrome. Some students have no disability at all.

To call the school exceptional and even revolutionary, as those with intimate ties to the academy do, is one thing; measuring that success is another. To be sure, it would be hard to measure Lionsgate’s achievements and those of its students using standard metrics, but other yardsticks more than tell the tale of a remarkable— and, if families are to be believed, nonpareil — journey in education.

“How do people judge the quality of a school?” asks Dr. Diane Halpin, the executive director of Lionsgate, at a recent meeting of parents interested in starting a second campus of the public charter school. “When you look at whether that’s a good school, what are you looking at? You’re looking at test scores. You’re looking at ACTs, the graduation rates, you’re looking at placement in colleges.”

However, those metrics and what Lionsgate does for its bread and butter often don’t align, Halpin said, because the standard benchmarks can’t capture the kinds of success Lionsgate records and indeed aims for.

“Such as the idea that you have a kid who was terribly shy and had so much anxiety that they couldn’t get off the bus to go to school, but now he’s in the student government, or now he’s the lead in the school play,” she said. “(The standard metrics don’t measure) what six years of being able to be yourself and being accepted and being able to make mistakes does for your self concept and self image, as opposed to some of the things that happen to some of the children who go to some of the larger schools.”

Standard measurements might not apply, but many other indices and reviews do — from outside experts, from parents and teachers in the school, and from the clamor among families with autistic children to secure a coveted spot for their child.

Attracting a buzz
In the past several years, for example, Lionsgate has attracted international delegations of educational experts seeking to learn from its model.

“What other school in Minnesota has educators visit from Russia?” asked Ron Berger, Lionsgate’s director of finance and operations, at the June meeting. “What other school in Minnesota has educators come from Japan? What other charter school in Minnesota has regular K-12s come and visit to see how we do things? So these folks have a lot to be proud of.”

The teachers and staff certainly are proud when they see their efforts culminate in a personal success story, of which there is a growing litany. That’s how they know they make a difference at Lionsgate, and that’s the evidence that keeps them going. 

“I can tell you that it’s the day-to-day successes that keep us teaching and motivated,” wrote Sarah Gonzales, a Lionsgate teacher for four years, in the school’s Insider publication this spring. “It’s in that IEP (individualized education program) meeting where a parent tears up when explaining how happy their child is at our school. Or the student himself who shares with confidence his goals for life after LGA when only a few years ago he struggled with self-esteem. It’s having your breath taken away when a student who previously called you ‘teacher’ for three years stops you in the hallway and greets you by name.”

All that makes Lionsgate an inspiring place, wrote Gonzales — “one that can catch you off guard and at times leave you simply speechless.”

Parents and students are no less enthusiastic. 

“Lionsgate is constantly encouraging (our child) and helping him to do some amazing things that I don’t think even he thought he could do,” one parent wrote. And another wrote: “Lionsgate teaches these kids to embrace the label of autism and these kids go ‘Hey, I’m autistic, so what, I can do anything.’”

Students say the same things: they appreciate the personal attention, they say the academy gives them confidence and shows them how to be independent, and, just as important, many point to the sense of belonging the setting gives them.

“I think all the people are so friendly and nice,” one student wrote. “It’s a good environment, it’s fun. When you go to this school, it feels like you are at a home with 100 other yous.”

The numbers 
For those who like more tangible numbers, those exist, too.

For starters, there are the numerous students who move on to productive employment or go to college. And there are the parents who want the same success for their children, like the ones who attended that early June meeting about starting another Lionsgate campus.

They brought with them the names of more than a score of other families interested in the venture, and those who had visited the Lionsgate campus and saw it in action repeatedly used two words to describe the experience: blown away.

The current Lionsgate — which this month moved from a shared church space in Crystal, Minn., to a new and larger facility in Minnetonka — has bulged at the seams since its inception, and uses a lottery to pick from a pool of students on a growing waiting list.

“I have been in a few growth companies, and I always talk about Lionsgate as a growth company,” Berger told the parents in June. “It is what we are, it is how we operate, and it’s what we’ve been through.”

The actual numbers testify to that reality.

“The first year was fiscal 2009, and we had 68 students,” he said. “We went to 93 the next year, and to 133 the year after that. The rest of the story was, the first year was grades 7 through 10, then 7-11, and the next year 7-12, but we also had more students in every grade. So we had very rapid growth through fiscal 2011.”

At that point, Berger said, the leadership adopted a more controlled approach to growth through 2015.

“You see a leveling off between 2015 and 2016 (at 161 students), and you know what that is?” he said. “We’re out of space. This year we only had 14 seventh graders, and that’s all we could take.”

This coming year, in the new facility, Berger says Lionsgate officials expect to have a 187 average daily membership, which really means an enrollment of 190 kids, and he said that’s related to the space they have gained by moving into the new facility. 
Still, as of last October, Lionsgate had more than 160 people on its waiting list from the 58 communities it serves in the Twin Cities metropolitan area.

How they do it
There are many reasons people get excited about Lionsgate.

For one thing, class sizes range from 8 to 14 students and support services such as speech therapy, occupational therapy, and social work are provided on site, Lionsgate leaders say. All staff have extensive training for serving the needs of students on the spectrum, they say, but many of the techniques are beneficial to all students, autistic and non-autistic alike.

Halpin stresses that, as a public charter school, Lionsgate is open to all students of all abilities.

Indeed, while the program is inclusively designed to meet the unique needs of students living with Asperger’s syndrome and of those on the autism spectrum, officials stress that support services and techniques that include structure, clarity, and predictability also benefit students without disabilities and those with disabilities other than Asperger’s syndrome and ASD.

So, in many ways, school leaders say, Lionsgate functions like a typical high school with core academic classes such as math and science, elective classes such as drama and art, and after-school activities. 

But, in addition, it offers full support services and transition teams to provide necessary training in areas such as social skills, occupational therapy, speech-language skills, and transition skills (such as preparing for employment, preparing for postsecondary education, and independent living skills).

The result, they say, is that general education teachers, special education teachers, and therapeutic support service staff work collaboratively with students and families to identify students’ unique strengths and challenges, and to provide a well-rounded education for every student.

Halpin said the philosophy is to catch kids where they are at and provide the services they need to take them to the next step, wherever that may be.

Practically, said Alicen Thorstad, the chairwoman of the Lionsgate Academy board of directors, who also has children at Lionsgate, that means a small ratio of students to paraprofessionals and professionals. Indeed, 60 percent of the staff is paraprofessional support.

“Your social studies class is going to have your general education teacher, your special education teacher, and it’s going to have an educational assistant for that room,” Thorstad said. “So you have three adults right there with those kids. Then, if you’ve got kids who need one-on-one support, you add them on top of it.”

The system is working, Halpin said. 

“We’re getting people into class,” she said. “But in order to do that, we have to have people who can go with the students because they do have some pretty big needs.”

In a traditional setting, she said, you can do with a lot fewer bodies.

“So whereas in a school where you have five kids with big needs, and they’re just going to shut the door and they are just going to stay in there and do all their learning in there, you can do that with a teacher and two paraprofessionals,” Halpin said. “But if you’re saying, ‘OK, you’re going to go out for the drama class, and you’re going to go out for math, and you’re going to go out for art and science, I have to have people who are available to go with those students.”

Sometimes, she says, the students at the beginning may only stay a few minutes in that class, but the objective is to have them tolerate the entire class over time. 

Different students have different needs, though. Not every student needs such one-on-one supervision, and not every student needs Lionsgate through the entire program. Few students leave, but some do if they meet their objectives.

“We’ve had kids leave after their 8th grade year,” assistant director Brandy Dougherty said. “They just needed something to get over a hump, and they went back to their home districts and they have been very successful.”  

At the other end of the spectrum, Lionsgate is the only charter school in Minnesota with an 18-21-year-old transitions program for students seeking to become more independent in living, employment, and post-secondary education after their senior year. Eligible students who have not met their IEP objectives can stay in the highly specialized program until age 21.

It all adds up to success, Dougherty says, as the personalized approach appreciates the individual needs of students and the collaborative philosophical framework builds a unique and transformative environment.

“One of the most important things that we have today is our culture,” Dougherty told the interested parents in June. “We have a lot of staff and a lot of students, but everybody is important and you do feel like a family, and it’s something you don’t get to see at some other traditional school districts.”

An evolving revolution
In the end, Berger told the parents, the goal is independence — “if you think about a gateway to independence, that’s what we are about” — and he describes the academy as an evolutionary undertaking that in many ways has become revolutionary.

Among other things, he says he believes Lionsgate is the only school in the nation that has a program where ASD and mental health needs intersect: “It’s been quite a ride, in a good way,” he said.

And yet, for all the accolades and success received, the leadership team knows it isn’t perfect, and school leaders say they are constantly striving to improve and take on new challenges.

“As we go, we try to stay pretty humble because you can’t build credibility and get recognition if you think that everything you do is right,” Berger said. “The only thing that we know for sure is that everything we’re doing today may or may not be on the list in five years, but, if it is on the list of what we do, it has to fight for its life.”

Halpin agreed.

“We’re still learning,” she said. “We love ourselves. We do. We think we’re a great program. We wouldn’t work here if we didn’t. But we also know that we’ve got places to go. We know we’ve got some things we need to do better and that we’re not perfect.”

One task is in fact to increase the ratio of students to staff in some classes, they say.

“My kids have told jokes that they have gone to classes and there were more adults than kids,” Thorstad said.

A general education teacher and a special education teacher and an educational assistant, when combined with those who require one-on-one assistance, can result in an adult overload in classes with small numbers of students, Halpin added.

“A lot of kids will come in with paraprofessional support on their IEP, like on a one-on-one basis, and when you have a class full of 30, that’s probably necessary,” she said. “When you have a class of eight, probably a little overkill. We are trying to be mindful to use people in the best way possible.”

Thorstad agreed.

“Now that we’re further along in the program, we ask, what can we streamline, what can we make better?” she said.

Challenges and obstacles
Beyond trying to continue to improve, Lionsgate — and other schools that want to emulate it — face ongoing challenges and obstacles. Halpin says one of the largest challenges faced by a school such as Lionsgate is creating a wide array of services to serve children with all needs, while being able to retain the general education model.

“So we have general education teachers, secondary teachers that are certified — they could walk into any classroom in Minnesota and teach language arts, science, mathematics, social studies, and any of their elected disciplines,” Halpin said. “So you need to be able to have enough students who can do the rigor of the coursework, but at the same time you have to have the services for all of your students. It’s a tricky balance.”

Also high on the obstacle list is cost. Berger says the average annual student cost at Lionsgate is about $50,000, not including transportation. In Wisconsin, by comparison, the average per pupil cost is a little less than $12,000.

And while special education is a reimbursable category beyond that general per capita number, Wisconsin’s reimbursement special-education rate was only 26.8 percent to school districts for the 2014-15 school year, and the costs are reimbursed only after they are incurred, not at the beginning of the year.

The state also provides funding for high-cost special education services for children whose educational needs exceed $30,000 per student. This year, the aid totaled $5.7 million for 951 students, the state Department of Public Instruction reported. 

Eligible costs are 70 percent of an individual student’s actual, additional costs above $30,000 not covered by other state and federal special education funding sources; claims, DPI stated, totaled $8.8 million, which required prorating aid at 65 percent of eligible costs. 

Examples of required services eligible for high-cost special education aid include paraprofessional support, attendant care, or an educational interpreter.

The aid paid in 2015 covered just 46.2 percent of eligible high costs for approximately 1,052 students, while local education agency requests for reimbursement totaled more than $13 million, according to the DPI. 

DPI had sought 100-percent funding of reimbursable high-cost special education aid in the 2015-17 budget. The governor denied that request, DPI stated, and in addition the budget reduced the portion of a student’s costs above $30,000 that was eligible for reimbursement from 90 percent to 70 percent. 

The Joint Committee on Finance did increase aid by $5 million in the second year of the biennium, that is, for 2016-17.

Those costs don’t even contemplate the need for a suitable building and facility for such a charter school, which needs more space for therapy and other programs unique to the school’s educational mission. 

Another challenge is resistance from parents and educators who argue that a separate campus for autism is a departure — and, some believe, a step backward — from the mainstreaming of special-education students, or inclusion, as it is called.

Halpin answers that by saying Lionsgate is not a move away from inclusion; rather, it represents another needed option and choice for families.

“You have folks who will say, ‘Hey, this is not an inclusionary model, and in special education we want our kids to be included,’” Halpin said. “That’s supposed to be a really big thing. What we come back and say is, ‘This is a choice. This is a choice that you can have among many. If you have a child on the autism spectrum who is receiving appropriate services, who is taught by teachers who understand them, who have friends, by gosh, that’s great. That’s where you want to stay and that’s where you want to be.’”

On the other hand, Halpin said, if any of those elements are missing, it’s nice to have a choice.

“That’s all that Lionsgate really represents, a personal choice by parents to have their children in a building where you’ve got other kids with disabilities on their own journeys,” she said. “And that in itself creates some issues. I’m on this journey, I’m on that journey. I’m going to push a button, and, wow, we look like a button. You have to have an open mind about that whole inclusionary process.”

Ultimately, establishing a school such as Lionsgate is an enormous challenge for the families involved, for local educators, and for the community. Some hear voices that doubt that such an effort can succeed.

Lionsgate’s founders encountered those negative voices but persisted and succeeded, the academy’s staff points out.

Now others seeking to do the same thing hear different voices as well. They are the voices of Lionsgate students lauding its virtues; they are the voices of professionals who acknowledge that special skills and services are needed for many on the autism spectrum, and that a unique setting such as Lionsgate can provide not only those services and a well-rounded education but a space where autistic children can feel they belong and where they can be themselves “with a 100 other yous.” 

As one student wrote simply but straughtforwardly: “Here they accept more differences and more learning differences and that’s nice.”