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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 (228)Sign in or register to postSubscribe to comments via RSS

Debra in Memphis's picture
Anonymous (not verified)

Memphis city and Shelby country have around $200 million in surplus. There is no such thing as coming together at the table. Sandra, wow, so many teachers get burned out and they are hanging on for their pensions, they are if at all, practicing outdated methods, they are not qualified and they just don't care. How do you build new schools and the ones that are open are not up to par. My son can't play the trombone, or go swimming, he won't go to homecoming or the prom. How would you feel if he couldn't learn science, work on computers and read? Would you want him to get the best services possible and later in life make choices, like picking out his own clothes, going shopping, feeding himself, ties his shoes. Which would choose, for us to fight wars for oil and lose so many of our children, fathers and mothers, or would you spend whatever it took to make sure that every child has to opportunity to reach his potential. As it was said before, society will pay a little now or a whole lot more lately. We are spending billions of dollars monthly, alot of it is being stolen over there, why can't we spend our tax dollars for everyone. We can bail out big companies, but we can't take care of our children, whatever their needs may be.

EDN's picture
Anonymous (not verified)

"If it weren't for people like me, people like you would still be sitting in caves talking to each other" Temple Grandin, professor, author, autistic. Without a little autism, we would be without so many scientific achievements. NASA, the computer, the internet are just to name two recently but really it is the same brain that thinks about gravity, relativity, and all forms of mechanics. You can have your typical child and her typical thought process. And by the way, my child who gets more than average services also does not use your 'typical' programs like team sports.

Anonymous's picture
Anonymous (not verified)

That is truly sad that collaboration is not welcomed. As a teacher, I feel that I can learn a lot about the child from the parents. I encourage parents to share information about their students' learning styles, behaviors, and any other concerns. I feel that as partners, we can help the student succeed. I always try to do what is best for each student. I just hope that the parents can see that.

NetWit2008's picture
Anonymous (not verified)

As an educator and the Aunt of a beautiful highly functioning autistic 8 yr. old boy, it IS sad in those cases where collaboration is not welcomed or fostered. Our family has been a part of both kinds. Believe me when I say, we much prefer the positive collaboration route!

It is a delicate balance for both the school system and the parents. Both have to dig deep to employ patience, empathy and understanding. Not only do they need these attributes to successfully work with the child, but to work with each other. It is easy to jump to conclusions, label the other side negatively and discount feedback. But the reality is, in the end, the child will suffer both directly and indirectly, impeding progress or eradicating it.

It's much like a parental unit. Until both parents come together, the children will suffer. Until the parents and school system can act as a collaborative unit, the child will suffer. Really, no one wins. In our experience, EVERYone suffers ultimately, in one way or another.

The parents/family become defensive and untrusting; the school staff becomes defensive and wary. The family is often labeled as combative, disgruntled, argumentative, reactive...you fill in the blank.

There is a scared, dreadful feeling that boils in the pits of my family's stomachs whenever there is a problem at school. Will we be heard this time? Will we be labeled as "difficult?" Will our loved one be safe at school? Will we all be able to work together to err on the side of the child and do what's right for HIM, putting our own agendas and egos aside?

As a family, we are blessed to work together for his benefit, in the school system or otherwise. We do a lot of talking, praying..and yes, sometimes what feels just like fighting with the school to be heard, to declare our rights and his, to help everyone understand him and his feelings, so they'll love him and want to help him as much as we do.

We only want what's best for him in each case and will settle for nothing less. However, we are always cognizant of the struggles on the side of the school district to have the funds, to find qualified staff to work effectively with him, to just plain old understand there are differences with autistic children not discernable to the naked eye or with a rigid outlook or guarded point of view.

Sometimes we are wrong in our tone or presentation of feedback, for that we do apologize, but cannot change because we must always err on the side of doing what's right, and best- for him.

We see the good work the teachers and staff do and always try to applaud and encourage them. Hopefully they see that. Hopefully they can put themselves in our shoes to even partially understand the struggle. We certainly try to do that from our end when considering them and the stressful, often thankless jobs they do for our kids in general.

If we come across as tigers fighting for this little cub, we are. He cannot fight or speak adequately for himself. So until he can, we will gladly take up that task, all the while hoping and praying we can get his teachers and staff to join the battle, not as opponents, but as allies.

It IS a delicate balance. Here's praying that we all successfully learn to walk over the high wire without falling too far off course or away from our main objective....to care for and educate this wonderful young man and all those like him. Those God has given to us, to ALL of us- to make us better parents, to force us to become closer families, to challenge us to become better educators, to allow us the opportunity to evolve into better human beings overall.

That's my daily prayer, and the prayer my whole family sends out to all of the families and educators trying to get through this maze as best they can, using the tools they've got.

I could go on and on, but I'll step off my soapbox for now. :o)

Lisa M's picture
Anonymous (not verified)

As a special education teacher that is fairly new to the world of autism, I must say that I enjoyed reading this article by Fran Smith. It was very informative and well written. I also thought that Sally made some very good points about the school and parents working together as a team. I think that it is so important for parents and teachers to work together for the benefit of the child. Well said.

Christina's picture
Anonymous (not verified)

After reading Sandy's comment I couldn't stop myself from commenting. I only could hope that 19000.00 would take away the hurt, the pain, the look in my sweet boys eyes when he says he doesn't understand why the other kids physically and verbally abuse him. If that is all it would take to get the teachers to understand and work with him effectively I would gladly pay it! You know what , I wouldn't change him for the world though because he is SPECIAL! One of a kind! So, when my special needs kid is making more money than yours in 20 years, we should have this discussion again and see who made the bigger impact on society. I think I actually became less intelligent just by reading that comment! It is narrow minded individuals like this that have no idea what it takes to raise a special needs child and take for granted how easy they have it. Instead of being concerned about what your "typical" child is not getting - be thankful that you do not have to fight for every little inch of their education like we do. If you know you are being politically incorrect - keep it to yourself!

Dawn's picture
Anonymous (not verified)

This article and thread are old, but perhaps my comments may still help others. For years I thought as many other parents without special kids, that these kids should be in other programs not distracting my kids or that they could be disciplined out of it. I continued to live in this denial even after my first son was obviously not the same as other kids. I kept thinking I could teach him to fit, force him to 'get it.'

After dozens of phone calls over a year and a half of behavioral concerns at school we had to go in for "another meeting." I was ready to fight for him. Feeling the people in the room cared, I listened. That was the first time I got a clear picture of what life was like for my son. The educators around him did care, but had no training and many other kids to think of as well. My son's desk was back in a corner with tape on the floor marking off the area where he had to stay and the other kids had to stay out. He was treated as a leper of old. He had no friends at all, was teased, hurt and made fun of and didn't know why. Though his IQ was higher than any other kid in his grade, he was made to feel stupid because he couldn't clearly write out his thoughts. With the help of the school we learned about Aspergers and were put in touch with resources to help us. I was grateful for the school's help, and understood their limited resources. Together we worked to try to make things better with "simple solutions." He was allowed 'busy toys' at his desk to occupy his hands, permission to go to the office if became too emotionally overwhelmed, and other simple things that did not require extra effort on the teacher's part.

Over the years we have found taking an understanding proactive role with his teachers to be very helpful. Go in assuming they want to give your child the best education they can. They are probably untrained and each kid is unique in how their behavior manifests their quirks anyway. The teachers, staff, and administration would probably LOVE to give your kid every program, resource and advantage under the sun. However, they are underpaid, underfunded and usually getting abused both by the parents and the district above them. Meet with the teacher, counselor and principal before school even starts if you can. Let them know you understand their burden and you want to work with them, not make their job harder. Present strategies that have worked with your kid before and display your willingness to work with them. Be very open and active in your communication, but in a way that is considerate of the teacher time. Ask your teacher to be willing to try things, "as long as it doesn't disturb the other childrens' learning environment." Thank your teacher and staff often for caring about your child, even for minor concessions. We are fortunate enough this year to have a very innovative teacher. Sitting still and listening for long periods is really hard for our son. His teacher had the class draw up agreements which include such things like it's okay to take your shoes off in class if they are slip ons, water bottles at desks, moving about the classroom during seat work time and standing during instruction- all with the condition that it respects the learning environment of the class. The goal was to include our son and allow him his uniquness. The side effect was a classroom of young people who felt empowered and have displayed increased sense of responsibility over the course of the school year. Everyone benefited. My experience has been when we open our hearts and are willing to expand our thinking to work together for the benefit of all involved, the special kid, the teacher, parents, staff, and the other children in the class, everyone truly does benefit.

Shirley's picture
Anonymous (not verified)

Thank You So Much Sandra
I couldn't have said it better :)

Bruce's picture
Anonymous (not verified)

My son has high functioning autism so he was not fully diagnosed until Kindergarten. He had been in a special class since he was 3 for language delay. After his he was diagnosed with Autism a friend of our family, cajoled us to try the gluten free - sugar free diet. Although I live in Houston, I am from a small town in East Texas, and thought this was a bunch of fertilizer. About a year and half later, in desperation we tried it. My son always had a pot belly, after a very smelly (gassy) week, we saw improvement. He was talking in more than 3 - 7 word sentences, and actually having a conversation. He still has some bad days, but his bad days now are not that bad. It turns out after clinical testing, he had a extremely high level of yeast in his system. Note: The test was done by our family physician and LabCorp, not a quack test. This was after three months of no sugar, normal flours, or most fruits (grapes, bananas, bad etc), and bread, which our friend had recommend. Cooking is harder, (it takes at least 3 alternative flours to do anything), he is starting to catch up in school, but still behind the rest of his classmates in his normal school class. He is now on a lot of supplements recommend by our DAN doctor, but .. did I mention the normal classroom. BTW. The whole family is on it and I have lost 35 pounds. You can have cookies, cakes, etc just more trouble. There is a magazine for Living Without stuff that is great. Just substitute, half a cup of honey and half a cup of aguave nectar for the sugar. Cookies are easy just use coconut flour instead of all purpose flour.
Your grocery bill will increase, but your well being will also.

mike's picture
Anonymous (not verified)

That is truly sad that collaboration is not welcomed. As a teacher, I feel that I can learn a lot about the child from the parents. I encourage parents to share information about their students' learning styles, behaviors, and any other concerns. I feel that as partners, we can help the student succeed. I always try to do what is best for each student. I just hope that the parents can see that.

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