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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

Anonymous's picture
Anonymous (not verified)

Reply to Sandra from Phoenix--My first reaction was to say, "shame on you", but that is not going to help either of us. I am a teacher and the mother of a child with ASD. In order for my child with ASD to become a functioning and contributing member of society, we needed to invest early on and in big ways and it is paying off. All children with ASD have potential and many of them will indeed make great contributons to the world. I guess as I consider every child's needs, it seems the most reasonable approach is to level the playing field. Those of us without learning challenges have access to the world and all it has to offer. If we only invest in kids without learning and social challenges,we leave behind many who could eventually contribute, not drain society by needing to live in group homes and have support their whole lives. Economically, this makes the most sense. Humanitarily, this makes the most sense. Be grateful your daughter has what she needs to access what the world has to offer.

Anonymous's picture
Anonymous (not verified)

Like anything that we try to get accompished at the social-ecucational level in our American society. Our knowlege and insights out-pace our implementation by a good 30 years at least. ABA is successful because it took a research basis to its approach and was grounded in behavioral theory. Americans like the control and predictability that behavioral approaches offer.

Nevertheless, those with any long-term experience with children and persons that live with autism understand that they benefit most(as does any growing person) from a multi-pronged approach to healing and education; this includes nutrition, specific sensory and physical experiences, social skill and friendship-development training, as well as help in self-development; not to mention the possible aid of supplements or medicine because of anxiety or other neurolgically-driven issues.

Education for these children is quite expensive - but with more enlightened physicians, community, and educational administrators, programs could be set into place within the public school framework. People should be very careful just jumping to ABA as being the answer. The developmental work of Arnold Miller and Stanley Greenspan come much closer to healing the WHOLE child, along with the very important work of occupational and speech and language therapists.

texas's picture
Anonymous (not verified)

In response to your self labeled "politically incorrect" response, it's not so much about being politically correct and voicing your opinion on equal rights that concerns me, but rather your lack of knowledge and awareness that has you misinformed about the costs associated with provididng even the half equivalent for these "special" children to receive the half of what your child receives on a daily basis. (your child could ride a regular bus for instance where a child confined to a wheelchair could not, your child could go up the stairs where the other may need a ramp,your child could toilet themselves while the other may require a diaper change, not to mention the modified equipment and programs needed in the classroom just to ensure that my "special" child is integrated into what your "typical' child might grasp with something as simple as a chalk board demonstration)

Clearly you have no idea what hardships and disadvantages children and their families with disabilities face on a daily basis. You should continue to count your blessings for your healthy and 'typical' child. As a teacher who has worked with children born healthy and so called 'typical' children UP UNTILL that devastating day when suddenly in a drop of a dime they became "not so typical" as a result of car accidents, balcony falls, hit by a car, run over on their bike, brain tumours, meningitis, various illnesses and rare diseases, you name it...freak accidents including routine surgeries like tonsil removal gone wrong, high fever...these kids ended up in my classroom with severe brain injuries-often confined to wheelchairs, paraplegic,unable to talk, bathe , toilet or feed themselves like they once use to. Prior to these accidents, these children were as healthy and independent as your "typical" child. Your words are offensive for the lack of humanity, compassion and understanding you demonstrate.

My only advice to you is to spend a day at a rehab centre, hospital or school for children with disabilities...I would strongle reccomend that you take your "typical" child with you so she does not grow up with the same lack of empathy and disregard for those less fortunate attitude you display?

As far as your beleif that your daughter and I quote you here ; "she's probably more than likely going to make a bigger impact on the future than a child with severe autism" and thus "she should be entitled to more of my hard earned tax dollars" ... lets just hope she doesnt turn to drugs, alcohol, get pregnant as a teen, suffer from cancer or depression, anorexia, bulimia... whatever...should I then turn to you and say she's your problem and why provide her with the social services meant to help her? Lets give her less even though she requires treatment, services to get better? Im playin devils advocate here, now your drug addicted child is hopeless. Now my "typical' child is bound to make a bigger impact than your pregnant teen daughter? There is something wrong with that way of thinking.

There are many people with disabilities in this world who have made a difference and had a huge impact on society and the life we live today, many of them famous and autistic. Spend some time and research this topic with your daughter. It could enlighten you and question the impact you make or lack making in your own personal life and the views you pass on to your "typical" kids. You have been misinformed to think that disability does not mean ABILITY given the right service and support. Yes, that includes Autism.

Kitty's picture
Anonymous (not verified)

This was a good article. I appreciated the fact that other teaching methods were at least mentioned beyond ABA. Children with ASD are as different from one another as all children are from one another. They need educational programs that are different and individually suited to their needs.

As far as the negative comments here, I have seen and heard them before. It does not make me angry despite being the mom of 3 kids with autism. Do you know why? It is because people who think they are not worth the money and time it takes to educate them lose. They lose the happiness that a smile makes. They lose the joy of a job well done. They lose the ability to teach their own children what life is really about. While their kids sample drugs and sex, mine will be giving me hugs and telling me they love me every single day. In truth my kids could teach your "typical" child some very important things that have nothing to do with intellect. There is no price tag you can put on this.

Thank you to the educators and parents who care enough to see the worth in my children.

giggles's picture
Anonymous (not verified)

i totally agree with you on this one.... i have a 5 year old son with autism, and my biggest problem is his teacher... grant you she is a lovely teacher but like you said she is not properly trained to deal with children with autism... it takes patience and most of the teachers rather not work so hard when they dont have to.
i am currently working on getting him into a pirvate school for autism, if you have any leads please let me know.

Anonymous's picture
Anonymous (not verified)

Say we have a choice of funding two projects in developing an electric car. One program has failed repeatedly and after 3 years has produced a model which works off and on. The other program needs funds to put a very successful model into production.
Where should we invest our money?
From the society's perspective you are absolutely right. Unless funds are unlimited, we should back the winners, not the losers. That means pouring the money into education for the brightest first, the average next, and the permanently incapable last.
As a father of two autistic children I will fight like hell to get special services for my children, to bring them from 64% to 70% of neurotypical performance. BUT were I a Senator, I would put the money where the nation's future depends.
However:
Since the incidence of autism is doubling every 4 years (steadily for 25 years) we can see that by 2028 one in three children will be autistic. That will about end society: no work force.

We SHOULD be putting all the money we have into finding the environmental intruder. We are dying as a species.

Anonymous's picture
Anonymous (not verified)

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.

Pamela's picture
Anonymous (not verified)

Okay, listen... I have 4 children, 3 of these are typicals ages 22, 20, & 7, plus 1 with Autism age 5. All 4 of these children are a true blessing in my life. To talk about feelings of rage, anger, or unfairness over a diagnosis... I have to say this is a untrue statement for many families with disabled children. Our rage, anger, or feelings of unfairness are due to our disabled children not receiving a FREE APPROPRIATE PUBLIC EDUCATION. Which by the way all typical/average children receive. The reason we have these feelings & why we fight so hard for this is simply put the more these children can do for themselves the less you & your typical children will have to do for them as adults. In Autism early intervention is a must. So say our school has to invest a additional $20,000. per year for a Autistic child for 6 years... that is a additional $120,000 per child. Because of this investment estimate about 47% of these children grow up to be able to care for themselves & lead productive lives, just like you & I, with no futher help from anyone... another 37% are able to hold simple jobs & need minimal assistance such as a group home... the other 16% needs maximum support for their adult lives. Which by the way will be just as long as a typical childs life. As opposed to not investing the extra money then about 10% lead productive lives, about 53% live in group homes with moderate support, & about 37% live in institutions or need Maximum support. What do you think is going to cost you or your typical child more... 6 years of support @ $20,000. per year in the school system, or a lifetime @ about $30,000. & up per adult? I truly believe all our childrens education should come first... no matter the cost... this means this should come before extra curricular activities. If we have funds for these activities then we should have funds for a FAPE. Also to say it's unfair for someones tax dollars to be spent on another child is unfair... wow... do you really think Sandra's tax dollars cover her childs education? Sorry but, singles, the childless, & older people pay taxes too... Their tax dollars also go for school systems is this fair... after all they don't even have a child in the system... oh, wait a minute, what about all those people who send their children to private schools or home school they still have to pay taxes also. Without all those peoples money/taxes to help provide a education for the typical kids as well as the disabled where would the school system be then? Would you say Sandra's daughter isn't being provided a FAPE because there isn't enough money to educate her in the system? Should the gifted get magnet schools or gifted classes? I say yes. My point is no child is a cookie cutter child wether gifted, average, or disabled. Teachers & classrooms should be educated & adaptable to each childs needs to best educate them to reach their fullest potential. Education of all children first Extra curruicular second. ABSOLUTELY NO CHILD LEFT BEHIND!

Pamela's picture
Anonymous (not verified)

I would not want you to teach my Typical Children. You are a prime example of whats wrong in the school system. The Few like you make the whole school system look bad. Believe it or not there are actually teachers who care & educate to the best of their ability and take workshops to be able to better teach the children with different learning styles. I'm not sure what you expected when you chose your profession... cookie cutter kids, easy street, summers off... who knows, but, whatever your reasons they were all wrong.

Anonymous's picture
Anonymous (not verified)

I am sorry that you are so angry about this. I sort of get where you are coming from, but its simple. Without appropriate education, your tax dollars are going to be used to keep my kid on the dole for the rest of his life. There is no way any of these severe or more moderately autistic kids will ever be able to take care of themselves unless something can be done now to help them. Unless, you plan to euthanize him you're going to be paying for his care one way or another. When the money is spent on education early in life, there is a chance that you could turn his life around and spare yourself the cost of a lifetime of needs. That's a win-win situation. Your alternative presents a lose-lose. That's the reason you should be advocating for getting these kids as much help now as possible.

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