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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

Diana's picture
Anonymous (not verified)

Hi Missy,

I had two students who were high-functioning autistic students this past year. They weren't in the same class together (one is a sixth grader and the other is a seventh grader), and my classes were actually quite large for a special education setting. Both classes had seventeen other students and were filled with many disabilities (ADHD, ADD, dyslexia, learning disabled, emotional disturbed, etc.). The sixth grade student took up a great amount of my energy and time, however I was able to build a bond with him and his mom that greatly helped improve his behavior in the classroom. I also set-up a strict classroom-wide rewards program, and this changed his behavior signficantly. While he never did as much work as his classmates, he did score incredibly high on all the grade-level testing. I modified assignments for him (1 to 2 steps, limit copying), and explained all the steps in detail. This really helped him complete at least some of the classwork.

My seventh grade student also made a drastic change, however it took a brutal IEP meeting where all his teachers basically told him he has to start doing some work or he would fail every single class. The same rewards program was set-up for the seventh grade class, and I watched this student completely change his behaviors. He used to shout out sexual and inappropriate comments daily, soon he only shouted out to ask questions because he was excited about a class assignment. His test scores were also extremely high (above grade-level), and I know he passed almost all his classes (he earned a "C" in mine). I hope this helps!!

Sincerely,
Diana

Kathy Smart-Mason's picture
Anonymous (not verified)

I agree with Missy as a regular classroom teacher with 27-30 first graders I find it impossible to meet the needs that I see on a daily basis. I feel that I have not had efficient training to work with children who have been identified with Autism or dyslexia yet I am expected to serve them as well as the rest of the students who have unidentified needs. Our inclusion teacher comes into the classroom but she is also expected to provide services for the rest of the building so the majority of the day I am trying to meet state standards as well as meet the needs of the students. As a parent I become frustrated because my daughter gets to do run errands or work on team rosters because teachers feel she will pass the state test; I wonder why not challenge or extend her knowledge?

Jayme Jones's picture
Anonymous (not verified)

This blog has certainly opened my eyes to the passion that people on both sides of the funding issue have. I do agree with a statement from one blog "the word FAIRNESS does not mean giving every child the same thing. The word fairness means giving each child what they need." As a teacher I know that every child in my class needs something different and it is my job to find out what each child needs and do my best to accomodate to their needs.

Jean's picture
Anonymous (not verified)

Our School District just does not want to accept the outside diagnoses.They don't want to give the IEP that's needet .Comments as such have been made "we can NOT let the child have it ,no we just can't .The diagnoses are from Doctor with 35 years exsperience .By two Doctors diagnoses PDD and dysgraphia .which was there since early start of school and the School never tested the child .
Seven years of education lost .I am hurting for my child to have to go through such agony of trying and can't .
yet is nothing but put down self estem low by the teachers that always write comments sloppy ..you can do better ..yes very sloppy writing etc. yet they won't do anything to help .I am stunned ,I always thought the schools were for our children .I guess no one really overseas all the funds given to them where they are spend .it sure isn't on the kids that need it .

Marianne's picture
Anonymous (not verified)

Tomorrow my daughter will turn 16, I have moved from Alaska, to Pennsylvania to California, from birth I was told she had a problem, you couldn't touch her. Hospitalizations, and being pushed from doctor to doctor. Schools saying she spaces out and is noncommunitive. So I began homeschooling and school districts just ignored us by plee for help. Finally this year the state of California said we want a total diagnosis on this child. I said great who's paying for it and I totally agreed upon any testing etc. Yesterday we got the final results. Well my child tested so high and what I thought was a high functioning aspbergers child was a full blown Autism. I read every book I could and followed learning programs that I felt would work for her. I joined and became a math specialist ( she can't do math, money and adding and subtraction is all she can do), and I focused on life skills. She couldn't walk on certain flooring etc., and foods well that's a whole other topic, along with clothes etc. She doesn't want friends, she loves her home. However, she has become a wonderful gardener and landscaper. Her reading is above her age level but if a doctor or someone asks or she has to speak or read, she shuts down. This is a child who reads over 300 books a year. ( I always felt is I could teach her to read then it would be a plus.) However she cannot write down anything she reads. She can explain to you in the pictures she sees in her head. She wanted to learn to play the piano. But notes etc., no way. But watching hands play on you-tube videos and she can play Bach and current groups music by watching the picture of someone playing. Now she plays beautifully. Most people looking at her would not know how difficult life is. She will not graduate at 18 not even at 21 but she has so much to offer the world. Where will I continue to school her I don't know. Hopefully with her current complete study from all these specialist, something will be created. However, for years we were told we don't know where to send or put this child. I did it myself, and she has grown in to someone who doesn't see herself as disabled, only that things take longer. School systems I find bring down self-esteem and doesn't help build on the positives each child has within him. We work on stregthing her abilities and each year take on one hurdle at a time. Sometime those hurdles create shut downs and loss of weight but she chooses and we work slowly. Last year she was able to enter a resturant and sit down, she doesn't always eat with us but she goes, along with grocery shopping. This year clothes are her hurdle. She doesn't wear shoes or anything with zippers only 100 percent cotton and pull on clothes, and only certain colors. Then to get her to change those clothes each day is another story. However she tries. Schools don't work on those problems, hospitals and doctors have failed her that she won't talk or let a doctor touch her anymore. With all this an now this new diagnosis, I wonder what will they try and force onto this child. Will she shut down or accept, and as a parent will she ever function on her own, that is my question in my thoughts today.

Kim's picture
Anonymous (not verified)

My son is 7 and was diagnosed with Asperger's when he was 3. In order for my son to get the appropriate education that he deserves we had to hire an advocate to attend all of the IEP meetings. She isn't a lawyer but someone who specializes in special ed laws. One 3 hour IEP meeting cost us approximately $1,500 and that fee doesn't include all of the time she spent on paperwork and phonecalls. We have spent thousands of dollars over the last 4 years and I have had to be "in the district's face" constantly to check on progress and to fix things that weren't working. I remember the developmental pediatrician who diagnosed my son saying, "If you have a child with special needs, you had better we weathy or know someone with money." Boy he wasn't kidding. It is a shame that it takes so much effort and money on our part to make sure my son is successful in school. It makes me wonder what happens to those kids whose parents don't have the resources that we have.

Theresa, AA(ECE), BA(Elem. Edu), pursuing MA(Teach w/Tech)'s picture
Anonymous (not verified)

In 1996, my son was dianosed with autim at the tender age of five and we heard many horror stories like he would lack communication and language skills, his motor skills may be "off" and he may not be able to function. That was then and this is now.
Well, I am proud to say he turned 18 in March, graduated June 2009 from HS, going to college, and has practically made honor roll each year in school.
We or at least I, being the mother, thought it was my fault and somehow I was being punished for something. Then I realized he is my child and we have to help him and that we did. My husband was on the ship and I tried and tried and there were times where it was trying, but we told him that he could do it and made him believe in himeself. We put him in sports which helped his confidence level, now he is a brown/black belt in karate, played football and piano. He really is a wonderful kid, or should I say young man.
So, don't let this thing called "Autism" stop you from giving your child everything they deserve and just be there to support them no matter what the outcome. One day we will beat this and there are also many avenues to explore to increase their chances in life.

Tara's picture
Anonymous (not verified)

My son is just like your son. He is 7 years old and was diagnosed when he was approximately 2.5 years old. I find it is a constant battle in the school system to get them to see the needs and requirements of my son. He is high functioning and very intelligent. He is smart enough to figure out what is require of him most times in school and it takes everything to keep it together during the school day, and generally looses it with myself at home. It costs us several hundred dollars a month for medication in order to keep his behaviors and emotions in check. On top of this, my son has been recommended to go to a psychologist whose fees are several hundred dollars a visit. You have it the nail on the head when you said that parents who have children with special needs have to be wealthy. The statistics for divorce and financial stress are approximately 8 out of 10. We as a country owe it to our "future leaders" to give them the best support and chances to develop into productive contributing citizens.

Carol Hill's picture
Anonymous (not verified)

I, too, have a son who was diagnosed with Asperger's Syndrome at age 6. Due to a severe speech delay, he was enrolled in the PPCD (Pre-school Program for Children with Disabilities) at the age of 3. PPCD is a federally funded program for which children must qualify in order to attend. Choosing to educate ourselves in the IEP process is essestial.

I remember my first ARD (Annual, Review, and Dismissal - held once a year for Special Ed students) meeting. Being a college graduate, I felt useless in the meeting...and it was about my son!! By the 3rd or 4th ARD I explained to the group that no one was leaving the meeting until I understood what was being said...the ARD took 3 hours. At the beginning of that meeing I took out a table tent I had made that said, "We are all here for the educational success of "my son's name." I then took out MY agenda and handed a copy to everyone at the table. I cannot even describe the looks I got from the attendees. I further explained that while they have my son's best interest at heart for 9 months (a school year), I have his best interest for a life time. So we were going to make sure that I was satisfied that I understood what was going on at the meeting. At this meeting, one of my non-negotiable requests was to receive the IEP's at least 2-3 days ahead of the ARD so I would have a chance to really understand them. By the next year, I was intimately involved in my son's IEP's. I decided which ones were appropriate, changed phrasing of some, even added some when I felt that the ones selected (from a list they have no less) didn't meet my son's needs. Once word got out to the other parents what I was doing, I was flooded with requests from other special needs parents to attend their ARD's with them. My strategy for those requests was to educate parents by teaching them what I was doing. Sometimes I attended an ARD just for moral support...more often not. Ask a friend to attend an ARD with you just for moral support. Have a signal, just between the two of you, that will allow your friend to help keep you focused on the topic in case you have a habit of going off on a tangent (guilty) or you start becoming overly emotional. I usually held it together for the ARD, but would break down in tears afterwards because I felt like I had just finished doing battle.

The good news is that by Kindergarten/1st grade, the school administrators, teachers, my son, and I were working as a team for the benefit of my son. We all ended up with a wonderful elementary experience. Now he's in middle school, and I feel like I'm having to start over in some cases.

If you get a chance, read a small essay called "Welcome to Holland" if you haven't yet. A friend with THREE autistic sons gave it to me when my son was diagnosed. My friend and I have found it an easy way for other parents to some how relate to what it's like to get the diagnosis of Autism for your child. So many dreams seem to vanish with that one word. Yet you eventually find others that can replace those lost dreams with beautiful new possibilites.

Cecilia Virgen's picture
Anonymous (not verified)

My son is 14 years old, was diagnosed with Autism Disorder at the age of 9 by Regional Center, but also has a Specific Learning Disability (acheivement vs. potential)at the age of 11 through the school distriict. He was identifiesd as a GATE student at the age of 9 or 10, this makes it harder in a regular school setting. SLD is primary and Autistic Like Behaviors is secondary disability and GATE is nowhere, because he has never been able to participate in this program, which is not fair for my son.These were just the later disabilities in his most recent IEP's, because since he was 3 he had Speech/Language Developement Delay.
In response to both of these comments from the parent and teacher's prespective about collaboration I can truly say that I can understand both sides. First you need to know that I was working as a Paraeducator in Special Education and had attended many in-services/trainings regarding all types of disabilities. When he was in Kindergarten and 1st grade, I had a feeling that there was something wlse going on with my son other than just the Speech/Language Delay. I researched othe posibilities ranging from Central Auditory Processing Disorder (CAPD) to Austism, I would give his teachers information about what I thought would work for him in the classrom and they would welcome any info and suggestions with very open minds, And if that did not work then we would try something else (I would do the same at home when he did his homework). As he continued to be passed from garde to grade it became more difficult for him to get passing grades, some teacher continued to be opened minded, but there were always those that would not want any suggestions or information.
School's poilicies "collaboration and communication between the home and school" is a joke, becasue the only comminication and collaboration is when the student gets in trouble.

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