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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.

Comments (227)Sign in or register to postSubscribe to comments via RSS

faridah's picture

Take away funding for school sports, cheerleading,etc. in the high schools. Put that money for typical above average students and the special needs. Kids go to school to be educated in the classroom. It is not like all the kids playing sports go on to get sports scholarships and become professional athletes in life. Since autism has become so prevalent, school districts need to re-prioritize and decide what is really more important and let extra curriculum activities be privately funded by parents who care about this.

specialed123's picture

If you don't want people to attack, and you want them to come to the table ready to collaborate, my suggestion is that you do the same. The home providers have a unique perspective on this issue, whether they have master's degrees or not. And I say this as a special education teacher specializing in ASD. You sound defensive.

specialed123's picture

The comment below absolutely disgusts me. You really need to go into a different professional field. Who are YOU to decide which human being is worth the effort and which isn't? Doctors aren't capable of seeing into the future. You don't take a doctor's assertion that a child is headed for institutionalization and decide, well, that's the verdict so we stop trying. I am just sitting here with my jaw on the floor. I'm a special ed teacher. I've seen and continue to see great things happen with and for children with disabilities every day. If you're not in this game to help your students LEAVE. [quote]I am a classroom teacher and I see special needs children all day. My district spends a fortune on some these children, far in excess of the costs for regular kids. Some of the parents I have worked with have demanded and gotten special schools, aides, programs, etc. They have been told by doctors and or others that their child has little or no possibility of ever being anything other than institutionalized at some later date. The case I'm thinking about, the childs cost of education was about 600,000 dollars, not including litigation. Within 9 months of graduation, the child was packed off to a state developmental center. The parents comment was "I just couldn't deal with him at home all the time." Ever since that day I have thought about the misappropriation of resources, 50, 75, or 1000, regular ed kids are deprived aussaging the guilt and shame of parents who won't accept the reality of the situation about their child.[/quote]

specialed123's picture

Because your "bright creative typical child" doesn't NEED $19K worth of resources every year to meet her potential and learn. Be GRATEFUL for what you have and don't begrudge the poor ba$tards who NEED more. Fair does NOT mean equal.

[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]

specialed123's picture

Spoken like someone who has not even a rudimentary understanding of disabilities......

I've worked with children with ASD most of my career. They can and do learn what everyone else learns a lot of the time. They are simply different learners. Those that cannot reach grade-level academics often come very very close. And even the lowest functioning (which comprise a very small percentage of the children on the spectrum) learn valuable life skills that will help them become more independent.....costing us less in the end as taxpayers.

Learning disabled doesn't mean Learning Incapable.

Moreover, if you want Sandra's typical child to recieve the same monetary services as her disabled counterparts, then I want all the expensive chemotherapy that others are recieving. It's driving up my health insurance premiums, and I'm perfectly healthy. It's not fair. I also want some root canals I don't need, and I want a government-provided wheelchair for those days I just don't feel like walking. It's only fair, right?

Please. A society is defined by the way it treats its most needy members. Posts like this are ugliness masquerading as "realism." Count your blessings and call it a day.

[quote]Actually, you took Sandra's comments out of context. She said she thought her typical child should receive the same resources as a child with disabilities . . . that resources should be spent equitably amongst all children. She did not say that we should give any child less than any other, although that is what is happening now with diasabled kids getting more than non-disabled. I agree with Sandra, especially in this time of economic downturn in America. In our elementary school, the 2 kids with severe disabilities (one with Down's Syndrome and the other with severe autism) will still have their personal classroom aides next year to toilet them, keep them from screaming out in class and disturbing the on-going lesson, help them unwrap and eat their lunch, etc. I cannot believe that either of these children has learned any math or reading skills or any other academic subject being taught in the classes they sit through most of the day with their aides. Yet the class sizes are going up by 2-7 children per class as we absorb children from another school that is closing in our district. So one teacher will be spread over 25 to 32 kids in a class, some of whom have other learning problems; but the kids with severe disabilities will continue status quo with no expectation of even living alone some day let alone giving back to society what they will have taken out. I sense your outrage in responding to Sandra. But look in your heart - are you really angry at her "lack of compassion" or at the devastatingly unfair diagnosis people receive. Without a doubt, life is can be very unfair, even downright cruel. Sadly, providing all these resources (according to the article, $19K more per year than Sandra's daughter receives) isn't going to make a child with severe autism typical, or allow a child with Down's Syndrome to learn beyond his level of mental retardation. Yes, you're right, many people with disabilities do make a difference in this world. But it's Sandra's typical daughter who will have to work to pay the tax dollars that will provide those resources for disabled kids. I think we should pump at least a fair and equitable share of tax dollars into her. Call me uniformed, inhumane, incompassionate. I think I am a realist.[/quote]

stephen sylvia's picture

I have watched theese people for years...There is no concern for teaching Autism students , nor do they want them at the school..The system is poor. I was told on paper my son would be taught at the local labriay . The ad went in the paper . Four mounths later ...They spend more money trying to keep him at a low level...They have a poor relationship with many families , not just me....There seems to be no one in charge.

Dorothy's picture

Educating children with special needs early may cost a bit more than educating typical children. However, if we do not educate them to their full potential, down the road, we end up with adults who still have their disability, but who must be supported because they cannot support themselves.

If we do educate them using our tax money to its fullest effect, then these children can grow up to be self-supporting.

Here is just one example of an autistic child who did not speak until he was 5, but who just wowed everyone as he became the salutatorian of his high school graduating class

http://abcnews.go.com/WN/Broadcast/student-autism-class-salutatorian-del...

We also have Temple Grandin who has 3 PHDs because her autism was treated (and she was severe as a child, though she is considered to have asperger's syndrome now).

There are plenty of examples of what happens when you do not help these kids and you will never know how much they *could* have done if they had been given the resources they needed.

Dorothy

Pam's picture

Every child on the Autism Spectrum is different. You have to meet them where they are. (That is why INDIVIDUAL Education Plans were created.) Children with special needs have rights as human beings and the government as well as many many other entities world wide are supposed to support and enforce those rights. Every child in the United States has the right to a free and appropriate education in the least restrictive environment. With the increasing number of children with autism spectrum disorder, you would think there would be a little more concern and a lot more caring and compassion, from our educators. If you are that bitter about providing educational services to children on the spectrum because they cost too much, then please, by all means, stay away from my child. If you can't take the heat, get out of the kitchen! As for the student you were referring to, I am sure his parents were doing the best that they could under their circumstances (which we don't know). Try walking a mile in their shoes.

Pam's picture

Count your blessings and don't begrudge someone who is in need the services they require. In YOUR society, what would you have done about special needs kids? Institutionalize them all then complain that your tax dollars are being spent on the "hopeless", then drug them to make them easier to manage, then complain about the cost of drugs. Perhaps kill them all to save even more money? OOps, still too expensive to kill them off individually. How about the gas chamber? Or let's just about every pregnancy that has a potentially special needs child. Lady, you just killed Albert Einstein and many many other "quirky" people throughout history who made great advances in society.

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