Overcoming Autism: Public Schools Deal with a Growing Problem
As the number of special-needs students soars, public 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.
This article originally published on 3/19/2008
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Comments & Responses
(Autism) Aspergers
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 .
This blog has certainly
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.
Pre-K special education
I feel strong parental and staff involvement is crutial in all schools systems. When parents are involved in their child's education the best choices can be made regarding the child. Communication between the parent and teacher is so important. When there's a change in a students behavior, I call the parent to discuss factors connected with the change. The saying, it takes a village to raise a child, is so true.
Tara Sisemore's comments
"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.")"
Interesting how Ms. Sisemore doesn't mention that parents must agree to usurp some of their parental righs under IDEA through the Program, Procedures and Guidelines (PP&G)(http://valleysnafu.com/EIBT%20PPG.pdf) and that when school districts force parents to meet the criteria in the PP&G, it is in conflict with IDEA and there is a class-action lawsuit pending in federal court to put an end to the illegal portions of their "EIBT" program. Interesting she doesn't mention there are over 1,200 children with autism in her servicing area but only 170 of those by her own assertion are receiving ABA. She doesn't mention the other 1,000 children that are incorrectly warehoused in Special Day, Learning Handicapped, Severely Handicapped and other type classrooms. Funny how she doesn't mention that "oversee the programs" means telling private ABA businesses what they can and can't do, what kids they can and can't give ABA to, that they can't take private-pay, and that to be an ABA vendor of VMRC, you MUST agree to the contents of the PP&G and abide by it. Many other ABA companies have tried to come into our area, but are shut-out when they discover the PP&G is illegal and refuse to abide by it. Funny how she doesn't mention the hispanic family who's child was denied services because the only adult home during the day didn't speak english, or the many children denied services because they are non-verbal, or the family of twins that was on a waiting list for over two years when DOZENS of other children were accepted into the program who entered after the twins and the mother of the twins was told their children "Aged-out", or how your child is "not allowed" speech and OT services if you elect to sign up for "EIBT." She also doesn't mention that the "waiting list" or "interest list" or whatever they are calling it this week is based upon THE DATE OF RESIDENCY so families that move here and don't know their rights under IDEA are wasting their time. She also doesn't mention how waiting lists are illegal under IDEA and IDEA doesn't say anything about basing the child's services on the date of residency rather than need. VMRC will also not accept just any doctor's diagnosis. It must be through their own clinic or one of their "approved" doctors. Never mind that IDEA says services must be based on NEED and NOT DIAGNOSED DISABILITY....meaning a child with Down Syndrome, ADHD, etc that needs ABA must receive ABA.
Read more at http://valleysnafu.com/EIBT.htm.
PARENTS -- GET INFORMED ON YOUR CHILD'S RIGHTS!
TEACHERS AND ADMINISTRATORS -- I know you are vastly underfunded and understaffed. You have a HUGE group of passionate parents willing to do just about anything to help their children. Instead of unilaterally denying services to children, why don't you take a stand and partner with parents to lobby Congress to fully-fund IDEA? As you probably know, the Feds promised to fund 40% of IDEA when they passed the law. This has never happened. Instead IDEA has historically been funded around 17-18%. If IDEA were to be fully-funded, imagine the services you would be able to provide. Studies show that an adult with autism costs about $3 million dollars PER ADULT during their lifetime to support them in society. Isn't it smarter to pay $100-500k during early school years to create an independent tax-paying adult? As a parent and advocate, I hunger to be able to work with school district administrators to find solutions and lobby the Feds. However, I am unable to do that in our area because the violations of children's rights are so egregious and the lies are so bold to cover up these violations that I spend my time defending the life of my child as well as other children's lives. When you are helping parents whose children have been secluded in dark rooms, placed in dog-kennel type cages, photographed semi nude by administrators or children taught by their teachers to masterbate in the classroom to "cope", you just don't have time to partner with the remaining non-abusive administrators to create change.
But what happens...
But what rights does a school have if a student who is clearly challenged with levels of autism is not getting support from home? What happens if the parents won't have the student tested? What happens if the parents don't want that stigma, thus, leaving their child to the mainstream room and its challenges? I am currently struggling with a family who will not seek help for their student. I may not be a professional diagnostician, but as a teacher of 10 years, there are some signs that are red alerts. This student needs help and the family refuses to seek it. What rights does the school have to insist on testing and support for a student?
Bottom line: Is a free education unconditional?
ABA
ABA is amazing! My daughter gets ten hours a week (she's very high-functioning) and we've seen incredible progress in the six-weeks her program has been running. We're working with the Lovaas center in Las Vegas and they're incredible. I'd recommend ABA to any parent who was considering it. It's not a guarantee (no therapy or methodology is) but it's worth a try. One of my friends has a sixteen-year-old son who is extremely low-functioning and after a month on the program he was communicating for the first time in his entire life. What else can you say but WOW! Please support this program in any way you can.
Thank you for your insight.
Thank you for your insight. I have been struggling to come up with a plan for one of my students with ASD. I will look into ABA.
We need more of Life-skills
We need more of Life-skills and ABA classrooms. I was an asperger's sufferrer and my son is really withdrawn. Back then, (30 yr's ago) we didn't have lifeskills classrooms. I had to suffers other kids calling me weird, strange, and even emotionally disturbed. More power....
That is truly sad that
That is truly sad that collaboration is not welcomed. As a teacher, I feel that I can learn a lot about the child from the parents. I encourage parents to share information about their students' learning styles, behaviors, and any other concerns. I feel that as partners, we can help the student succeed. I always try to do what is best for each student. I just hope that the parents can see that.
Late Start
My son has high functioning autism so he was not fully diagnosed until Kindergarten. He had been in a special class since he was 3 for language delay. After his he was diagnosed with Autism a friend of our family, cajoled us to try the gluten free – sugar free diet. Although I live in Houston, I am from a small town in East Texas, and thought this was a bunch of fertilizer. About a year and half later, in desperation we tried it. My son always had a pot belly, after a very smelly (gassy) week, we saw improvement. He was talking in more than 3 – 7 word sentences, and actually having a conversation. He still has some bad days, but his bad days now are not that bad. It turns out after clinical testing, he had a extremely high level of yeast in his system. Note: The test was done by our family physician and LabCorp, not a quack test. This was after three months of no sugar, normal flours, or most fruits (grapes, bananas, bad etc), and bread, which our friend had recommend. Cooking is harder, (it takes at least 3 alternative flours to do anything), he is starting to catch up in school, but still behind the rest of his classmates in his normal school class. He is now on a lot of supplements recommend by our DAN doctor, but .. did I mention the normal classroom. BTW. The whole family is on it and I have lost 35 pounds. You can have cookies, cakes, etc just more trouble. There is a magazine for Living Without stuff that is great. Just substitute, half a cup of honey and half a cup of aguave nectar for the sugar. Cookies are easy just use coconut flour instead of all purpose flour. Your grocery bill will increase, but your well being will also.
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