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WHAT WORKS IN EDUCATION The George Lucas Educational Foundation

Educators Deal with the Growing Problem of Autism

As the number of special-needs students soars, schools grapple with ways to offer high-quality education without going broke.
By Fran Smith

There may be no greater challenge facing public schools today than the staggering increase in children diagnosed with autism.

Even though the law requires school districts to provide a free "appropriate" education to every student, school budgets are not growing nearly as rapidly as the number of children classified as having special needs. Parents are increasingly demanding more than basics; they want intensive, expensive services that offer the best chance to rescue their child from a lifetime of disability.

Experts disagree on the most effective approach to teaching children with autism, and many school districts cobble together a mishmash of methods that changes with each new fad, source of funding, special education director, or classroom teacher. Too often, good intentions collide with limited resources, and overloaded bureaucracies clash with parents driven by hope and anguish. The result is often a mess.

"The way we treat and educate children with autism is a national disgrace," says L. Vincent Strully, founder and CEO of the New England Center for Children, one of the oldest and largest private schools for autism in the United States.

Yet, against so many odds, that grim picture is beginning to change. A small but growing number of districts are creating innovative programs based on the latest research in autism and modeled after some of the most highly regarded -- and expensive -- private schools. These pioneering programs may change the future for special-needs kids, and not only for the children fortunate enough to get into one. If these experiments prove successful, they may change the future of autism education throughout the United States, and not a moment too soon.

A Complex Diagnosis

Autism is not a single ailment but a complex collection of behaviors that generally surface around age two. Children can have a wide range of abilities, and the diagnosis runs along a spectrum, reflecting the child's level of cognitive and language impairment. Kids with autism typically have problems with social interaction, and they engage in repetitive, seemingly obsessive routines.

But exactly how this plays out depends on the child and the severity of the condition: A five-year-old with a mild form of autism called Asperger's syndrome may focus on a single interest -- say, horses -- to the exclusion of all else. He may be a handful at home and disruptive in school but have normal, or even accelerated, intellectual ability.

At the severe end of autism-spectrum disorders (ASDs), a five-year-old (or even older) child may still be unable to say the word horse or identify one in a picture book. The repetitive behavior that is an autism signature may take the form of endless body rocking or arm flapping. Sensory stimulation overwhelms many kids with autism. In the noisy, cheerful hubbub of the best elementary school classrooms, an autistic child might erupt in fury or shut down completely.

But these are general characteristics only, and they don't begin to capture the variability and unpredictability that make autism so painful for families and perplexing for educators. No two kids are alike, not in their behavior, in their potential to learn, or in the way they will respond to a particular instructional approach. And that places an extraordinary burden on school districts, which are legally required to meet the needs of every child.

An Explosion of Illness

Autism affects 1 in 150 children in the United States, according to the newly revised estimates from the U.S. Centers for Disease Control and Prevention -- far more than previously believed. In autism hot spots such as New Jersey, the rate is around 1 in 95. Nearly 120,000 school-age children nationwide were classified with ASD in 2002, up from about 20,000 in 1993.

Certainly, better detection and a broader definition of autism mean we are identifying children today we would have mislabeled as mentally retarded, emotionally disturbed, or just plain strange a generation ago. But almost nobody attributes the rise purely to greater awareness.

Theories abound about what's going on, fueled mostly by desperate speculation on the part of grieving parents. People blame everything from genetics to food additives to environmental toxins such as polychlorinated biphenyls (PCBs). Many parents suspect mercury preservatives in vaccines, though extensive scientific reviews have not shown a link.

In 2001, a widely circulated article in Wired magazine advanced the notion that a math-and-tech gene had spurred a surge of cases in northern California's high tech Silicon Valley and explored whether autism is, in fact, a "geek syndrome." A 2006 study by Cornell University researchers pointed to an alarmingly pervasive culprit, suggesting that children exposed to too much television as infants might trigger the disorder.

Whatever the cause, there is no doubt about autism's impact on public schools. Administrators face growing pressure from vocal and sophisticated parents who insist on state-of-the-art instruction, highly trained teachers, staff-to-student ratios as low as 1 to 1, and extensive support services such as speech and occupational therapy. When districts don't deliver the programs parents demand, or pay for private school alternatives, families are increasingly willing to fight in administrative hearings and court.

That makes ASD more than an educational challenge for many districts; it's also a legal nightmare. "Autism is a leading problem on the radar now and a leading source of lawsuits," reports Bryna Siegel, an adjunct child and adolescent psychiatry professor and director of the University of California at San Francisco's Autism Clinic.

The federal Individuals with Disabilities Education Act guarantees "free appropriate" education to all disabled students. But the government has never fully funded the act, and "appropriate" can mean one thing to a parent determined to get the very best for a child but something else entirely to an administrator juggling limited resources for a seemingly unlimited number of special needs, including autism as well as attention deficit hyperactivity disorder, learning difficulties, physical disabilities, and serious medical conditions (all of which are on the rise in public schools).

Children with autism do best when there is a strong partnership between the school and the home, but often the relationship is strained, or worse. "There is increasing tension between parents' aspirations for their child and what the school is willing to provide," observes Michael McKee, executive director of the Virginia Institute of Autism, a small nonprofit private school in Charlottesville. "School districts pretty much across the country define 'appropriate' as 'merely adequate.'"

Even merely adequate is expensive: A study by the Special Education Expenditure Project (conducted for the U.S. Department of Education) found that special classes, therapists, aides, transportation, and facilities for an autistic student cost an average of nearly $19,000 a year, or roughly triple the cost for a typical child. When districts go beyond adequate to establish intensive one-on-one programs or support a full array of speech, play, and occupational therapies, spending can skyrocket to $75,000 or more.

Parent Power

The Internet has spurred a new activism among parents, who trade information about "good" and "bad" districts, new research, effective advocacy tactics, legislation, court decisions, and more. Last year, the autism community cheered two U.S. Supreme Court rulings, even though they had more significance psychologically than legally.

In October, the court upheld a lower-court decision affirming parents' rights to challenge a school district's individualized education plan (IEP) without first "trying out" the district's placement. The case involved New York City schools, and the Supreme Court's 4-4 vote did not establish a national precedent. Still, it gives parents new ammunition in fighting what they see as inappropriate or ineffective placements for children who need the best intervention available as early as possible.

In May 2007, the court ruled that the parents of an autistic child may represent themselves in a lawsuit against a school district; they don't have to hire a lawyer. The case involved an Ohio couple who had placed their child in a $56,000-a-year private school and sought to get the local school district to pay for it. After exhausting administrative appeals, the parents sued in federal court, representing themselves because they couldn't afford an attorney. A long battle ensued over whether the parents had a right to do that, but their victory resolved only the legal sticking point, not the question of who should pay for their child's education.

Students with autism are more likely than other special-need students to receive out-of-district placements. In fact, almost every student at almost every leading private school for autism, including the New England Children's Center, New Jersey's Princeton Child Development Institute, and the Virginia Institute, attends at public expense. Still, the vast majority of autistic students go to public schools. Many parents devote their lives to making sure their son or daughter's school delivers the services spelled out in the child's IEP, the all-important document that drives the education of every disabled student.

But the IEP is only as effective as this year's teacher. "If you've got a terrific teacher who really gets it, everything is great," declares Lisa Jo Rudy, whose eleven-year-old son, Tommy, has high-functioning autism. "You get another teacher, and it all falls apart."

Some parents, disappointed with their local offerings and unwilling or unable to send a child out of their district, upend their lives and move. After four disastrous years in Pennsylvania public schools, Rudy, the guide on About.com's autism page, decided to teach her son herself. Last summer, the family moved to Massachusetts, which Rudy says has friendlier homeschool laws.

More often, parents pack up for a district they believe offers more than the one they're in. Web forums buzz with opinions about specific schools and pleas from these searching nomads, often in a lingo that would baffle anyone unfamiliar with autism: For instance, a parent moving to New Jersey posted, "I am looking for small-group instructions with no aversives used, ABA-based, trained staff."

In a five-county area of California's Central Valley and Sierra foothills, young children with autism have access to free intensive behavioral programs for up to forty hours a week, a commitment almost unheard of anywhere else. The number of autistic children under seven years old receiving services there has grown even faster than the national average, from four in 1994 to about 170 today. (The number of children diagnosed has remained comparable to the national average, but the number receiving services in the area has grown faster.) "Families will move here for services," reports Tara Sisemore-Hester, autism coordinator of the Valley Mountain Regional Center, which oversees the programs. (See "Rewriting a Life Story: Treating Autism Early Can Help Save Later.")

Debate and Desperation

A huge debate rages about the best way to educate autistic students. But experts agree on two things: Early intervention is critical, and the more hours devoted to learning, the better. "In some ways, the ballgame is played out by thirty-six months," says the New England Children's Center's Vincent Strully. And as for time, for kids ages 2-5, thirty to forty hours a week of intensive effort appears to be ideal. "Autism untreated becomes a living hell," adds Strully.

Applied behavior analysis, or ABA, is the best-known educational strategy for autism and has the strongest evidence supporting it. "The research literature is clear," states Patricia Krantz, executive director emerita of the thirty-eight-year-old Princeton Child Development Institute. "The only approach that has systematically documented its effectiveness is ABA."

ABA, which grew out of the work of psychologist B. F. Skinner, uses reinforcements in structured environments to encourage learning. Teachers break skills, from the simple to the complex, into small, measurable tasks that students repeatedly practice, ideally 1 on 1 with the instructor. When a child performs a target task -- say, places a book on a shelf -- he gets a reward, such as a cracker or a token that earns computer time. If a child instead slams that book onto the floor, she gets a prompt. The teacher might point to the book and nudge the kid's hand downward.

Teachers are specially trained and work to make sure no one rewards a child for negative behaviors, in school or out. In the best programs, educators work closely with parents, who learn not to pick up the book when a child throws it at home. A student in an ABA classroom will practice dozens of skills a day: language, adaptive, social and emotional, and academic. The teachers painstakingly log each result, producing a solid record of progress and a clear picture of what's working or not.

Some ABA programs for young children claim that almost half the students do so well that they eventually are able to function, and even thrive, in a regular classroom. But some have questioned those statistics, and in any case, nobody can predict which 50 percent will make this transition.

ABA has critics, some of whom contend that the approach is boring and uncreative and doesn't stimulate learning so much as compliance. Although supporters disagree, ABA clearly runs counter to inquiry-based, student-centered learning, the vogue in general education. Some autism experts and parents advocate developmental approaches, such as the Floortime Foundation's DIR/Floortime model, which emphasizes social interactions and problem solving, as well as sensory-integration therapy, which purports to change the way the brain processes sensory input.

Many public schools use a combination of methods, trying to offer the best of each. However, this approach makes it hard for parents to know exactly what treatment a child is getting, and ABA proponents say it causes other problems as well. "The mixed method, or what I call the eclectic approach, is probably the most widely available model. It's politically correct. And it's particularly ill suited for kids with autism," proclaims Gina Green, a California-based autism consultant, researcher, and behavior analyst. "These kids really thrive on consistency of instruction. By definition, a mixed method has a lot of inconsistency."

In one of the first head-to-head trials comparing different educational methods, published in 2005, Green tracked sixty-one three- and four-year-olds in the Valley Mountain Regional Center programs. She found that those who received intensive ABA showed significantly greater improvement in cognitive skills, language expression, and adaptive skills than children in eclectic programs or nonintensive behavior treatments. A study in Norway of children ages 4-7 had similar findings.

Until recently, some private schools offered pure, intensive ABA. But that's changing as parents press for evidence-based educational strategies and school administrators realize that it may be cheaper to beef up autism programs than continue to fight lawsuits. Public ABA programs are emerging, often in innovative partnerships with private schools.

Fran Smith is a contributing editor for Edutopia.
Kim Girard contributed to this report.

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stephen sylvia's picture

The only moon you'll get from the schools are the kind when they bend over...telling you to get lost

Jason's picture

In response to the posting quoted below - I was diagnosed with "social affective disorder" as a kid (Asperger's hadn't made it into the DSM yet, it wasn't until the DSM-IV came out that it was included). I didn't speak from kindergarten to about 5th grade, and very rarely after that until I was about 16. I was largely ignored and left to sit in the back of the classroom by myself. My parents didn't push for services and the school didn't volunteer to offer any. I've since been diagnosed with Asperger's. I was never very successful in public school, but got by. Eventually I went on to college, graduated with a BS in biology and was accepted into a PhD program in biochemistry. I chose to leave the program before finishing for other personal reasons, but could have easily excelled as a biomedical researcher. I currently work in the transfusion medicine field for one of the largest laboratories of one of the largest suppliers of blood and blood products in the country, and perform some of the most complex testing in the lab for patients with very difficult blood compatibility issues. I've worked in transfusion medicine for over 10 years, and over the course of my as-of-yet short career I would like to think I've played a hand in saving many lives. In deference to my own sense of modesty, I won't tell those parents with "average" kids decrying the lack of resources available to their children due to special ed kids eating them up where to shove it, but I assume by my tone you'll get my drift. Never mind, you go ahead and shove it.

And for educators, I hold little but contempt for most of you to this day. I credit myself alone (with exceptions for the rare people I can count with one hand who made some difference in my life) for my success. My 8 year old son has been diagnosed with Asperger's as well, and if I bring a defensive attitude with me to IEP meetings then there's a reason for it. You most likely deserve it.

Everyone is an individual, and you have no way to predict what they are capable of. I'm lucky that I was able to develop into a functional adult without the benefit of services as a child, but I don't think any of my grade school teachers would have predicted that I would grow into who I am. As a matter of fact, I ran into my kindergarten teacher a few years ago when I was visiting my old home town, and when she heard what I was doing with my life she started crying. She thought I was "retarded" (her words) as a child. So don't think you can just write anyone off for whatever reason, the "spectrum" that is autism includes everyone, and everyone has the potential to excel at something. Some of us aren't lucky enough to be in the middle of the bell curve but can still do great things once we learn to be ourselves.[quote]I realize that my comments and my feelings are politically incorrect. I feel really angry about this. Why doesn't my bright creative typical child get $19K worth of resources every year? She's probably more than likely going to make a bigger impact on the future than a child with severe autism. Why can't resources be spread evenly amongst all kids? You get the best you can for your particular situation with the per capita amount for all kids in your district? Why is a child with disabilities entitled to more of my hard earned tax dollars than my own typical child???[/quote]

Gagan nagarwal - 14189's picture
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Hailey's picture

I have a child who has been diagnosed with autism. In first grade they took his iep away and made him repeat the 1st grade again. this year in second grade i have advocated for him to have a medical iep based on communication, behavior etc. The public school has denied every request. All year my student has gotten off the bus with bloody cheeks and black eyes the principle agreed to put a camera on the bus months ago and it has not been done yet. His specialist has sent medical documentation and recommendation but the school still refuses. what can I do or should I just home school?

Hailey's picture

I have a child who has been diagnosed with autism. In first grade they took his iep away and made him repeat the 1st grade again. this year in second grade i have advocated for him to have a medical iep based on communication, behavior etc. The public school has denied every request. All year my student has gotten off the bus with bloody cheeks and black eyes the principle agreed to put a camera on the bus months ago and it has not been done yet. His specialist has sent medical documentation and recommendation but the school still refuses. what can I do or should I just home school?

stephen sylvia's picture

As far as most schools are concerned children with Autism should all be band from publis schools . The nerve , that a parent would want a child with special needs to mix in with main syream students.

Jos's picture

"As far as most schools are concerned children with Autism should all be band (sic) from publis (sic) schools." I am not sure whether you are an educator, or is this a broad assumption on your part? Because, I feel embarrassed to call myself an educator when I read comments like yours. Make a positive contribution to all children, whether you are an educator, gardian/parent, or part of the broader community.

By the way, every child has the right to feel safe in the world and to be educated by professionals. Try supporting this child and parent. Why not. Often there is more to be gained professionally and personally than the assumption that more is lost and taken away.

What an isolating experience when other people choose not to listen and enact change, broader community and educators alike.

Russell's picture

I am a licensed general ed kindergarten teacher and I am having some anxiety about my new assignment. I love kindergarten and I LOVE TEACHING. I was just told that I will be having 3 children in my class that have different levels of autism. They will be in there with 25 other students. Ahhhh. My anxiety is that 28 students is a handful alone but add 3 with ASD. Oh my! Kindergarten, in my opinion, is more first grade than kindergarten. The state of Indiana is requiring more and more testing and standards to be met. I am finding that we have less time to be social, have creative play and are requireing more and more static lessons. I guess my biggest anxiety is that I don't feel that I am appropriate to teach the three with ASD because I don't have any special education or any autism training. I have voiced my concerns to my principal and she basically stated that I should just do my best and make it work. OK...and maybe I can grow wings and fly. Ok..maybe not that bad but I would be expected to take the extra training on my own dime. I can't do that. I am completely strapped and the budget just won't budge. I guess my question is...how is it that is even legal to have teachers teaching children who need special instruction when they don't have the special training? I feel overwhelmed. I want to do what is best for ALL of my students, regardless of thier intelligence and/or disability but I am only one person who is being required to do so much already. Any ideas to help?

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