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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

Staci Gingerella's picture
Anonymous (not verified)

I am currently enrolled in Walden University online masters program. This blog caught my eye has I am currently teaching in a preschool autistic classroom. Your statement "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" really spoke to me. With just a few weeks into the school year I have found this to be so true. When asked what its like to work in a classroom with autistic children, how they act, how they learn and what you do as a teacher. It is very hard to just give a general answer. I find working in this classroom has pushed me to be a teacher in which I find ways to help each child individually.

I have a cousin with aspergers and it was not until I started working in the classroom did I see the difference in each child. It was not until I worked one on one with each child did I see the level and rate at what each child can learn at. It was not until I observed and assessed each child did I see that autistic children are just like any other child. They each have their own strengths and weaknesses. Each child has their own personality and behaviors.

One thing I learned in my undergrad was to not use the word "normal". Who sets the bar for what normal is? I truly believe that Autistic children are normal. Just like any other child they deserve the best education and the school officials in public schools to provide that for them. Just like any other child they to can learn, perhaps a different way, perhaps with more attention needed. So what is normal? Normal to me is what society has interpreted their own understanding of children/people to be. But just because autistic children learn differently, might not speak, have different behaviors, ect. They too still learn, have some form of communication, and just like all children have their own characteristics/behaviors.

Gloria Craig's picture
Anonymous (not verified)

could you explain simply what is in and IEP Program. we have been struggling for two years going on the third one now..to acquire this program for our 13 year old granddaughter who we now have custody of since our daughter's death may the 8th. she has asperger's syndrome and add and they say she is not eligible. now, they have once again been doing what they have done for the past two years, each signing her planning and making sure she has her assignments, she is seated up front, they say they give her less work, and she is doing great once again at the beginning of this school year as she has in the last two years. but as she does well, it seems get a little relaxed and the grades begin to lower, the planner is not checked or signed...so we are waiting to see what is going to happen. we have all ready had 2 meetings this year with no results as far as we are concerned. we have a letter and they have it , too, from a Dr. at the Kluge Children's Center in Charlottesville, Va., who sees her twice a year for evaluation and he says it would accomondate Kaiti's needs to have an IEP, but they ignore this. they have their own evaluation. where did they get their medical degree?
we are unsure what and IEP program involves, but every other educator we see and doctor, from the Ear Specialist, to her regular doc, to nurses, to other educators in our area, says she needs an IEP program, and this is just from watching her in different situations, church, even her PE teacher at school, a school nurse. what is wrong?

Renay's picture
Anonymous (not verified)

I have two sons on the spectrum. I found my greatest source of infomation parent groups. I live in West Orange, NJ and we have a parent group called PASSE. You can contact them for anything from looking for a baby sitter to good afterschool programs for children on the spectrum. It is so good to speak to other people going thru the same issues. Also google Autism NJ and you maybe able to find a link about your state and find some local parents groups. Good luck.

Jeanne's picture
Anonymous (not verified)

As a mother of 2 children with aspbergers, I understand the frustration. I am also a school teacher. I have one son with aspbergers who was highly gifted. When my oldest was in fifth grade, his teacher told me that he was so much more advanced in reading and writing than anyone else in the class and that he could not teach high school English to just one student. When my oldest was in seventh grade, I allowed him to live an hour away and live with his father. The only reason I let that happen is because the school system where his father lives is awesome. I knew my child's education was more important than which house he lived in. It was the best decision i have ever made. His new school challenges him. He still does very well but he has to work for it. My middle son was another case. I had my children tested for austism by the school district, where we live and I work, when my oldest was in sixth grade and my middle child was in second. It was a nightmare. Two different people test my children. The first tester said my oldest had autism and my younger son didn't. The second tester said my younger son had autism and my oldest didn't. Because of this test, I never had my children tested again until a year ago. I finally had had it and I demanded that my younger son be tested again because he had the classic signs and he was struggling in Reading. This time the school psychologist tested him and she concluded that he did have it. My younger son is a very quiet and obiedent child very easily overlooked. He never liked school because he never fit in. This year I decided to send him to another school outside of our school district. It is a smaller school and my son is thriving. He loves school for the first time in 7 years. He has actually made friends and is starting to open up and participate in class discussion.He never had done that in the past. Some of my friends got mad at me because I took my son out of the public school system I teach in but I didn't care. My son was not getting the education he deserved.

Wendy Taylor's picture
Anonymous (not verified)

The Value of a person
I am greatly disturbed by the comments stating that because children may end up in group homes and institutions they are not entitled to the best education that they can possibly get.

I have worked with individuals with developmental disabilities for most of my adult like. I have been lucky to have met an incredibly divers community of people. They come from a wide range of back grounds. some were raised in institutions and others at home. Some attended special schools and others went to public school. Many held down jobs some worked in sheltered workshops. All of them lived in some level of supported living and all of them were worth while human beings who enriched the community.

I noticed early on that education made a huge difference in the quality of their life. I even proposed that we begin looking at intervening earlier and the agency now has a thriving children's program.

Yes a child with sever disabilities may not become a banker or lawyer but they will become an adult member of our community. My child is a mathematical genius despite his brain tumor. He is likely to go on to college and a PHD. This does not make him any more worthy then your typical child struggling to figure out how to add.

Money
Like it or not we are a community. I know funding is a never ending problem. But, when we stop seeing the world as us the typical and them the disabled we can start to see how spending on special education helps us all. Much of the money used for special education actually comes from medicade, not the school district. The services brought in with this money help the whole community. For example 1 to 1 aids frequently help the students around the child they are working with. When I was an aid I was able to take small groups for extra explanation and help. These groups included children without IEPs who would otherwise not get the extra help. 65% of my pay and all of my admin costs were paid by medicade not the school district. Far from being a drain, special education students bring value to the community. Recently the medicade contribution increased so this value is even greater. By focusing on the % we must pay we lose sight if the value we get for the money.

The focus needs to be on providing the best learning environment for all. This means developing the most coast effective way to provide the broadest range of services for the whole community, and fostering a collaborative of active parents, community members and school staff. There is no such thing as a high performing school only high performing communities. There is no room in this for fighting over resources.

elle roberts's picture
Anonymous (not verified)

why don't they just have a special for mentally retarded kids? good idea?

Daniel's picture

Why do you stop there? According to your logic why not deprive the kids you are going to be warehouse workers or janitors or sanitation engineers of an educationto give it to kids that will achieve great things ? Why "WASTSE" money on them? Kids are susposed to get what they need even if it costs more give the money and resources than educationing a "normal" kid.

Sophia B.'s picture

[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]

I have to agree with you, and i understand why you are angry ! Money should be given fairly to every childs.

alimentation et sante avec les fruits

Vladmir's picture
Vladmir
i love school

My 8 year old son, Bajinko was diagnosed with autism last year. Times since then in our home have been very difficult due to the fact that he is always very sad and does not socialise with other kids very well. We have been to get help many times but this problem will remain with him all his life.

Kathy Chapman's picture
Kathy Chapman
Parents of a child with Autism

My 4th grader has Autism and transfered from a Specialized Autism School to a regular school with RSP.. He was AT THE PRIVATE SPECIALIZED SCHOOL for over 4 years and kept at grade level in most area. Because of expense we put him in our community school with RSP.
Our son is falling below grade level in most areas now.
I'M HAVING ANOTHER IEP MEETING AND ASKING FOR A AIDE. IS THIS THE WAY TO GO?

MOM WITH A CHILD WITH HF AUTISM.

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