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.

As the number of special-needs students soars, schools grapple with ways to offer high-quality education without going broke.

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.

autism

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.

This article originally published on 3/19/2008

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Educational Coach at Northwest College Support

A big question is how we

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A big question is how we provide support for Autistic young adults. Especially Autistic young adults with the intelligence and potential to earn a college degree. Colleges are so far behind in providing support to their students on the spectrum, but are slowly beginning to catch up. High schools could also do more to develop programs for college preparation specifically geared toward high functioning students on the spectrum. These are students who have a ton of potential, but cannot navigate the college world without support. As a society, we are throwing away the potential of so many students (and therefore hurting the progression of humanity!) by not providing enough support or accommodations for ASD students in higher education.

some questions for you and some possibilities

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What do you mean by severe? Is he non-verbal? Does he have tantrums? Do you have his IEP information? How do you know he needs a shadow? How many children are in your class? Is there a resource teacher who might be able to help you? Or is there a prekindergarten class with more than one teacher. We sometimes had the preK (special needs preK) kids coming into the K class with their aide and she helped all the kids not just the few she brought with her. What kind of work will you be doing in the class? Do you have centers? If so, perhaps you can find out which center he likes best and use that to make him feel welcome.

Some things to try:
1. Make sure that he has warnings of transitions so that he will not be anxious about what is going to happen next. You should use a visual schedule to show him what the day will be like. This is good for all the kids, not just him. You could post it where all the kids can see it and make a smaller copy for him in case he needs it to be closer.
2. You may want to talk to the class in general about how everyone is different. You don't have to single this boy out, but rather make a point of letting the kids know they need to help everyone in the class to get along.
3. Once the class is settling in, you might assign kids to be buddies to each other. If every child has a buddy to help them, again, he will not have to be singled out. You can though try to see if there is a child who really wants to be his buddy. My grandson in kindergarten had several little girls who were very motherly with him.
4. You may want to arrange the classroom so that the kids get some sensory breaks. Set up an area where he could retreat when it gets too noisy and chaotic for him. The reading corner can easily be set up with a small tent (if your school will not buy one, they are not too expensive to buy yourself and they can be invaluable for all the kids when they need a quiet space).

Good luck!
You are welcome to email me at toto053 at yahoo if you want to discuss more in private.

Dorothy

Kindergarten teacher in a charter school

teacher in need of help

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Today was the first day of school at my year round charter school. I have a severely autistic boy in my class. He is in desperate need of a shadow, however our funding to get one will not be in until September. So until then, it is just him and I. I am just looking for some guidance on how to best assist him while still teaching the rest of my class at the same time.

ASD self-contained , Miami, Fl

I guess I live in a city that

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I guess I live in a city that provides a lot of support to Autism. Between the University of Miami's CARD program and Dan Marino's foundation, we hep raise so much money to help out. Our school has become an Autism Academy, focusing on hepling students with Autism. Of all the classrooms in our school, the ASD classes are the ones with the SmartBoards & SmartTables. We have the latest web-based curriculum at our disposal. I totally agree with the part about if you have a great teacher who follows the IEP you're fine and if you don't then it all falls apart. I feel blessed to working in a district who is working hard to keep up with the fast-paced growth of ASD....it's 1 in 88 children now affected with it.

"Why can't resources be

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"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???"

Fair does NOT mean equal. Each child should get the amount of resources he needs to get an education that allows him or her to meet his maximum potential. When you parent, you give different things to each child. One might be musical and get piano lessons. Another might hate music, but love art, so she gets art lessons. Educationally, one child might need to be accelerated, another might need special help. We must do want each child *needs* not what the general public thinks is *fair.*

Please read this.

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Please read this.

http://www.theatlantic.com/magazine/archive/2010/10/autism-8217-s-first-...

Many doctors certainly wanted to keep Donald Gray Triplett institutionalized, but he eventually went to school and at 77, lives on his own in a small town where people accept him. He plays golf with his small town friends.

The question that haunts every parent of a child with autism is What will happen when I die? This reflects a chronological inevitability: children with autism will grow up to become adults with autism, in most cases ultimately outliving the parents who provided their primary support.

If teachers like you are unwilling to try to help, the quality of life for all our children will be absolutely impossible when they become adults. Our children, like yours, are deserving of support to reach their maximum potential. The costs of educating them is much less than the cost of institutionalizing them for the rest of their lives. While *some* may still be institutionalized, many will be able to live outside of these places and we will be the richer for it, not the poorer.

Note that Temple Grandin was non-verbal as a child. She had many struggles, but now has 2 Phds and a very successful independent life. Luckily, her parents could fund her education. If they had been poor, it is quite likely that she, too, would have been in an institution as an adult and we would never have understood her brilliance.

Dorothy

what school are you dealing

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what school are you dealing with ....what town......stephenstovetop@aol.com

what school are you dealing

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what school are you dealing with ....what town......stephenstovetop@aol.com

Stephen Sylvia, how is your

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Stephen Sylvia, how is your son doing now, is he still at home. I am trying to get my daughter into collaborative schooling. Couldn't get a free advocate and have to pay for one. I keep thinking about your comment about it being like the mafia around here and it is very true, I know that more than ever now.

I am at the point of trying

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I am at the point of trying to homeschool, I already asked but they put me off but I'm at the end of my tether with this teacher and the asst. principal who backs her rudeness. Just to give you an idea about this one she tells me one day that she gave my daughter candy and it helped her through the day, so the other day I'm called in again because my daughter won't work and the nurse suggests I get a doctor's note to allow her to have snacks. I don't know if anyone else has noticed this in their kids but if my daughter has to use her brain at all she gets drained and needs more food than the average kid. So you would think this impossible teacher would be happy but instead she gets really rude about it because she would have to bring my daughter to the nurses office when she needed a snack, surely they have someone who could do this. My daughter's behavior has gotten far worse since she went to middle school here in Mass. but some teachers in the past have loved her despite her faults. This teacher brings out the worst in her and me. All she seems to care about is academics and how good she looks at the end of the year. We had a crisis in the family recently and she still didn't seem to give a damn. I have to listen to her talk about my daughter calling someone Monkey face and what an awful thing that is but I'm silenced if I talk about having her tested and anything relevant to her behavior. All they do is complain but then they don't want to hear what I am doing to attend to the thing they are complaining about. Has anyone else experienced this complete nonsence. I don't think she wants a solution because then she would have to stop bitching. I'm so upset that I'm not taking my daughter to school tomorrow and I'm going to the superintendent's office to try to homeschool her again. I really hate this teacher. I have never complained about a teacher in the past. If my daughter needs snacks give her the friggen snack!

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