Facebook
Edutopia on Facebook
Twitter
Edutopia on Twitter
Google+
Edutopia on Google+
Pinterest
Edutopia on Pinterest Follow Me on Pinterest
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

Meredith's picture
Anonymous (not verified)

I understand that there are many mixed emotions on the subject of children with disabilities and without disabilities; having and receiving extra services as well as having tax dollars directed towards the disabled child more so that the "typical" child. The reality here is that the disabled children need teachers and staff to be properly trained to handle their needs because of their disability. My 4 year old son has autism PDD/NOS, and I struggle with public schools because none of the staff and teachers have what it takes to help my child have a chance at the education that a "typical" child is receiving due to the fact that they are UNDER traind and can't provide the proper care to needy children who need more and deserve a 1:1 or 2:1 classroom. If they properly train teachers in the public schools than parents will be less likely to search for an out-of-district school for disabled children. "Typical" children have the ability to sit in a classroom and learn as much as they wish with their own desired efforts directed to their classes and work... where a child with autism or other disablities cannot without the extra help and care needed that should be provided from the schools and staff. Yes, a "typical" child may have a larger percentage of oppertunity (at this point) to have a bigger impact on the future, but isn't it just as fair to my child to have the same oppertunity handed to him with proper education? My child as well as other children with disabilities has just as much "brain power" to impact the futer positively, but it is up to the schools to provide a better education program to give disabled children that very chance that "typical" children already have without needing the schools to provide more intensive care the their child.

Anonymous's picture
Anonymous (not verified)

Why doesn't your bright child deserve the same money that goes to helping an autistic child? Let me explain it to you as simply as I can.

First of all, ALL children deserve a good education. But the word FAIRNESS does not mean giving every child the same thing. The word fairness means giving each child what they need.

If you think your child is going to contribute more to society than an autistic child, I think you are uninformed. For one thing, all research based evidence indicates that typically developing students BENEFIT from inclusion classrooms, and from having special needs kids in their classroom. The students benefit academically, socially, and emotionally for all kinds of reasons. In other words, special needs students have something to offer.

For another, one day your typical child will probably have a child too. Try this. Imagine your grandchild has autism. Then, how do you want to prioritize funding? What will seem fair then?

The money should be there for all kids to get a good education. But "special" means just that -- kids with special needs need special spending NOT to give them more advantages than your kid, but to get them somewhere in the neighborhood of equal footing, which can seem like a million miles away.

If you're worried about contributions to society, spending on early intervention makes a lot of sense. Kids who get early intervention go on to make contributions to society. Maybe you

Fair? Is it fair that your kid is NT and another is autistic? NO. If you want to focus on unfairness, start there. But life isn't fair. So you do the best you can, and you do what is right. Seems like you need to refocus on that.

an educator in Los Angeles with two beautiful kids

Heidi's picture
Anonymous (not verified)

You want fair?? Come and spend one day dealing with my autistic child - and let me have your "bright" child. You have no idea what it takes to be the parent of a special needs child. I feel sorry for your "bright" child and hope that they will have more compassion than you do. I am willing to bet that every parent with a special needs child would happily pay the $19K to have their child be "normal". Come on! You don't even need to worry about being politically correct - what about morally and ethically correct? As if money was even the point.....

wynette's picture
Anonymous (not verified)

hi! i have a 10 year old daughter attending a new autism treatment center 40 hours a week in the memphis, tn area. the center is called transformations and has an alternative educational placement program ran by a certified teacher. basically, she is considered home schooled. we have been opened since aug., we have about 17 full timers, 3 b.a.'s on staff and the ratio is 1 to 1. my daughter has been miserable since she was about 2 and has never had professionals that understand her. i feel truly blessed by her astounding progress and just true outward showing of happiness. i stand in awe everyday! please contact me with questions. the school # is 901-405-1258. if it hard to get us, be patient. we currently prepping to move to a larger facility. wynette

Nina's picture
Anonymous (not verified)

Sandra, your "bright creative typical child" will be able to take care of herself when she is an adult. Early intervention will help children with autism learn to take care of themselves too. It is much less expensive on society to treat children when they are young, when treatment can have the biggest impact, then it is to provide respite care when they are adults. Early intervention can help children overcome the disadvantage they are starting out with. Stop and think about your statement that your child is "going to make a bigger impact on the future than a child with severe autism." Do you realize how elitist, bigoted, and unsympathetic that sounds? If your daughter inherits your attitude of self-entitlement, is she going to grow up to make the world a better place? Since you have been blessed with a typical child, you should be working extra hard to help out the children who are not typical. Stop acting like you are entitled to more and start helping those of us who need it.

Tobi's picture
Anonymous (not verified)

Sandra, isn't that a bit like wondering why the child who can't walk gets a wheelchair and your "typical child" who walks just fine doesn't get one? Just because you can't see a disability doesn't mean that it doesn't exist.

Anonymous's picture
Anonymous (not verified)

You should think of what you are writing and what an impact it can have on people. My daughter has autism, she isn't severly autistic but it does affect her with even the simplest of things that people take for granted. My daughter is 8 years old and can't tie her own shoes. She doesn't get extra money spent on her at this point because the school district decided to put special ed kids into the regular classroom. So while your kid is sitting there patiently, wanting to learn more,,,the district places special needs in there and expects the teacher to teach at the special needs students level. Would you really want this to be the case?

What if your child lost his vision...Then what, would you want the school to pay extra for brail on all of the assignments. Oh and to pay each type of teacher to go for education so they can teach properly? I don't want pity for my daughter because I do know that things could be a lot worse. And I hope that you never have to see a family member deal with a disibility. I wouldn't change my daughter for the world. But I do expect her to get a good education. Just as you expect your regular child to.

Ihavrights2's picture
Anonymous (not verified)

Sandra

I couldn't help but respond to your comment. I think until you have walked a mile in the shoes of someone actually dealing with a disabled child for a day, then you could possibly learn to understand that families frustration. It bothers me when you compared your "Bright, creative,typical child" to a disabled child on who would make the "bigger impact" in society! Are you not aware of Albert Einstien? or Bill Gates? each of whom were diagnosed with autism! If you want more resources for your "Bright,creative child" then yell and scream and fight school boards like we have to cause they aren't just handed to you my dear. You can ask any parent regarding that! It's so sad that not only do us parents have to live our lives with a difficult disability, we also have to deal with the ignorance of people like you.

Anonymous's picture
Anonymous (not verified)

I agree that it would be great if teachers and parents collaborate, but I have tried every positive approach under the sun to even have people listen to what I am saying. Most of the teachers do not understand that these disorders are true neurological disorders, and believe that students with milder forms of autism or ADHD could do the work if they just applied themselves. Many of the problems with the public schools as I see them are from people's inabilities to think outside of the box and explore alternative approaches for helping students of all abilities. One size fits all education does everyone a disservice. Many approaches to help our children do not cost more-they are just a different way of approaching education using multisensory and experiential learning.

The battle to get even acceptible services for our children is so exhausting, that most of the parents I know would be thrilled to have a collaborative relationship with school personnel. But collaboration is not encouraged or welcomed at the tables I sit at for educational meetings.

Anonymous's picture
Anonymous (not verified)

Wow! Please don't try to claim you understand what parents feel from having a child living with autism. I didn't read one word that validated any understanding. People can't fully or even partially understand what it is like raising a child with autism. You have days that are hell. You can't imagine how it feels when your child comes home to tell you "I had a bad day at school, all the kids laugh and make fun of me and call me stupid because I can't do things like they do". Or when your child claims they don't have friends because they can't process feelings, words, and overall surroundings. Or feel like they are going to fail, so they don't even try. Why set themselves up for disappointment. But on the other hand the good days are even better. The day they get off the school bus with a smile from ear to ear telling you "Mom I had the BEST DAY! I made a friend, and I finished all of my work at school today". So when we have those days it's amazing! They feel like they can do anything, and they can. Can you imagine yet how either of those days feel? I mean can you really?
I can't even begin to explain how your posting made me feel. I could start with the feeling of angry, ashamed, but I think sad it a much better word. So many people say that children are our future. Autistic kids are part of that future too. So why would anyone want to make it a less bright future. Wouldn't this be a good example to set for you own children? Why not try to help others less fortunate than yourself? Why not try to do something positive for another person? We all talk about doing better things for humanity, investing in the future, and here is a chance for you to put those words into actions. To really try make a difference in one child's life. This is something a special needs parent does every single day. Which makes me think of a question, and I really hope this doesn't come across the wrong way, but I feel like it is called for. When you see commercials on your TV asking for money to help raise money for children with cancer, birth defects such as a heart condition or one who is born in a third-world country, do you think to yourself "Why send money. They will most likely die anyway and then I would have wasted that money." Maybe that child would have been the next President, or changed the world in some wonderful way.
Parents of autistic children pay taxes too. Life isn't fair, this is true. But why not give everyone a chance. Each child has a right to learn. Even if it means more attention to the way they learn.
You could try spending a day with the family of the two children with disabilities that share the school your children go to. Before you are so quick to put down kids with a dollar amount, really go and see what one day is like living their lives. Look into those parents faces and tell them their child doesn't disserve the $19k per year to have some bit of so called "normal" even though they know their child will never be "normal". Maybe then you can validate an understanding. Just give the kids a chance, they deserve that at least!
A Hopeful Mother of A Wonderful Autistic Child

Discussion Best possible SEL classroom curricula. What's your Top 3?

Last comment 1 day 14 hours ago in Social and Emotional Learning

blog A Look Inside the Classroom of the Future

Last comment 3 days 14 hours ago in Education Trends

Discussion Really Siri(us) Consciousness

Last comment 2 days 14 hours ago in Brain-Based Learning

blog New Class Roles: Building Environments of Cooperation

Last comment 4 days 23 hours ago in Social and Emotional Learning

Discussion The Never Absent Kid

Last comment 5 days 3 hours ago in Teacher Burnout

Sign in and Join the Discussion! Not a member? Register to join the discussion.