Facebook
Edutopia on Facebook
Twitter
Edutopia on Twitter
Google+
Edutopia on Google+
Pinterest
Edutopia on Pinterest Follow Me on Pinterest
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 (228)Sign in or register to postSubscribe to comments via RSS

Mom in Texas's picture
Mom in Texas
Inclusion?

The one thing this article did not mention is my biggest problem as a parent. In the area where we live there are no small schools and no private options. Inclusion for a child with Asperger's entering middle school for the first time is a nightmare. The only public education option here is a school with over 700 kids and because of cutbacks and school closures we are getting schools in good areas packed with discipline problems and criminal activity so severe that metal detectors, a no locker policy, and 3 full time police officers were put in place. My ASD child can't function in a hallway or cafeteria with 700 kids, much less one where he fears for his safety on a daily basis. The classrooms have more than 30 students and as for my son's IEP... it was completely ignored. Because of his disability he didn't qualify for AP classes which is where all the "good" kids are. Instead he is stuck in a classroom full of behavior problems and bullying. He became completely unresponsive and suicidal. I was forced to quit work, home school, and pay for weekly therapy sessions just to undo all the damage caused by a public school and forced inclusion. Inclusion is not the best education for our special kids. They need to be in a caring environment with like minds to thrive and grow and be encouraged to follow their dreams without fear of bullying and for their safety. Yes they need socialization but at what cost to the child. Inclusion has been the most damaging aspect of my child's education. He hates school and hates being around other people now because of everything he was put through in an inclusive environment. Kids with special needs deserve special schools. I believe its better for everyone involved. This is not segregation this is providing the best education in the most nurturing caring environment possible.

Noni Roach's picture

@ Anonyomous posted Posted on 3/19/2008 8:22pm:

Be careful. Autism is a SPECTRUM...not all kids diagnosed as such are unable to get to the point of becoming indistinguishable from his/her peers. Not all end up institutionalized...How do you know where your child falls in that regard unless you try to help him/her to the max. extent possible? Do you have a child with Autism yourself? If not, would you feel the same way if it was YOUR child?....I think not. If the school set up their programs for autism similar to these "private school placements" they would actually SAVE money. Their expense is their own fault and due to their stubborn resistance to change (in my opinion). If you have one BCBA resource teacher who aides 6-8 students per class in a mainstreaming/inclusion program in the public school...set up 6-8 1:1 TRAINED aides for each of the children that are all familiar faces and rotate daily between the children (similar to HBTS)...have clinical PSY's, BCBA professionals, Speech, OT and PT providers on site (like they already claim to) that oversee the program...(Speech, PT and OT providers would rotate amongst the children as well. This is currently done I believe)...it would cost the school districts MUCH less than fighting legally with parents (cost #1), causing regression (the more kids on the spectrum regress, the more they need financial/aide support. Cost#2), and/or private placement costs (expensive cost #3)......Hopefully one day my school district will realize that and "catch up" with what is going on. Massachusetts seems to have gotten wind to this. Hopefully RI will as well.I just hope it is before my son turns into a teenager for goodness sake! The fact that child ended up institutionalized makes me wonder how effective his school model was. I bet it was not an ABA-based treatment model. Am I right?

Margaret Scardina's picture

You are correct in stating that school systems are completely ignorant when it comes to thinking out of the box in regards to the autistic population. They have lost their common sense and rely completely on research-based programs that in the end show little or no improvement. As for your remark about ABA, I will certainly have to disagree with you because I would like to think that our autistic population is more than trainable and that is exactly what you are doing when using the ABA method. I have taught special education for the past 25 years, have my certification in ABA and have spent the last 10 years perfecting a program that is effective for the autistic population. I can tell you with confidence, that ABA is so terrible for them, it robs them of the right to learn how to think independently, how to become critical thinkers and productive citizens. How sad that we as a society have resorted into the expectations that these children deserve nothing more than "trainable." My school system in FL also refuses to listen to anything but ABA and how sad that this is the best that an intelligent society has to offer!

specialed123's picture

What on earth are you blathering about? Relying on research based interventions MAKES SENSE....research shows overwhelmingly that ABA WORKS. If it's not working for you, then I'm sorry, you're BAD at it! I'm a special ed teacher, with an extensive background in utilizing ABA to teach kids with ASD. It is not "training," nor does it rob them of their critical thinking skills, their independent thoughts, nor their ability to become productive citizens. On the contrary, it helps them reach their potentials.....which for some children, means going above and beyond what their peers accomplish! If your ABA students suffered or suffer as you describe....then you need to get the He!! out of the field. Please, do us ALL a favor.....

[quote]You are correct in stating that school systems are completely ignorant when it comes to thinking out of the box in regards to the autistic population. They have lost their common sense and rely completely on research-based programs that in the end show little or no improvement. As for your remark about ABA, I will certainly have to disagree with you because I would like to think that our autistic population is more than trainable and that is exactly what you are doing when using the ABA method. I have taught special education for the past 25 years, have my certification in ABA and have spent the last 10 years perfecting a program that is effective for the autistic population. I can tell you with confidence, that ABA is so terrible for them, it robs them of the right to learn how to think independently, how to become critical thinkers and productive citizens. How sad that we as a society have resorted into the expectations that these children deserve nothing more than "trainable." My school system in FL also refuses to listen to anything but ABA and how sad that this is the best that an intelligent society has to offer![/quote]

Dorothy's picture

While intensive ABA *may* work for some, unfortunately, the studies that were published on this bear out only some parts of the work. Unfortunately, there is a great deal of misunderstanding about what ABA is. The tendency to conflate ABA with discrete trial therapy makes it difficult to evaluate what has been done. If you are going to do ABA, make sure that you look into Verbal Behavior techniques and Natural Environment Training rather than relying entirely on discrete trials. It is true that ABA effectively gathers data on what is working if it is done well and this should most certainly be part of any good ABA program. I have not, however, found this being done in most school settings.

Note that adults on the spectrum who experienced ABA back in the beginning are very vocal about how bad this therapy was for them. Since autism *is* a spectrum, not every child should have intensive ABA.

Here is what my favorite VB expert says about VB and RDI and their similarities (I am a proponent of RDI, but I admit to being critical of the business model Dr. G uses)

http://www.playconnections.com/abavb_vs_rdi

Now, there are several newer interventions that hold a great deal of promise. DIR (Floortime) developed by Stanley Greenspan and RDI (Relationship Developmental Intervention) developed by Steven Gutstein are two of these. These are directly opposed to ABA in the sense that they work from a developmental perspective rather than a behavioral one. Since it is becoming more and more clear that autism is *not* a behavioral disorder, but a neurological one, these approaches are ones that fit because they work on the core deficits of autism (the executive functioning and social problems) rather than focusing on skills as ABA does. There are some other possible programs to look into as well. Note that RDI and Floortime do have possibilities for working in schools, but they require a change in the teacher paradigm.

For RDI, which is my preferred intervention, you must slow down, use declarative language and use facial expressions and gestures much more than most teachers do. I don't care for Dr. Gutstein's business model, so I would much rather go with *this mom*

http://thismom.blogs.com/this_mom/2006/11/ppp_day_7_getti.html

Dorothy

Margaret Scardina's picture

What I am blathering about is something that you obviously have no idea or understanding. More and more research is confirming that autism is not a behavioral disorder, but a neurological issue. Someone with adequate knowledge understands that "yes" they can be trained, but is that all that we have to offer. Children with autism are suffering from a body and mind that is out of balance and training the problem is not the answer. As you have no idea who I am or what I have accomplished with autistic children it only shows your ignorance by assuming that I am not doing the proper ABA instruction. The only reason that the school system is so in love with ABA is because they can train their teachers who have no idea how to think on their own when it comes to finding the correct and effective method of teaching. If it is not written down in stone for them, they are at a lost for direction and many, many of them (not all) end up being glorified babysitters. Anyone who has the ability to think out of the box becomes known as "blathering!" Well I am going to keep blathering until someone listens because restoring balance to the body will enable autistic children to perform to their highest potential much faster than any ABA program.

specialed123's picture

Nope, sorry. I do, in fact, know what I'm talking about. As Dorothy mentioned, too many people equate ABA with discrete trial training. If your "ABA program" looks like that....no wonder you call it "training" - and no wonder you're so down on it. It's not "Training" - it's just good teaching. I'm wondering if you have personally ever recovered a child? I have! And I didn't accomplish that by not thinking on my own or babysitting. Your comments just further prove that you must have been a lousy ABA provider --- again, leave the field and do us all a favor.

Margaret Scardina's picture

Actually, I did leave the field and now run my own business and have recovered many autistic children that parents have spent thousands of dollars with endless therapies such as ABA with no progress. One of those recoveries actually was my own grandson who now attends regular school with good grades. My autistic students are severe and ABA does not allow them to even begin to tap into their true potential. My program has made great progress with these students and it begins with restoring the balance to their body and mind. Maybe your ABA works for you, but in my school ditrict it is enough to drive a normal person insane not to mention what it is doing to these autistic children. If you think it works for you, then by all means give it your best shot.

stephen sylvia's picture

My son is not allowed a hearing with BSEA...and he cannot go to the same school his sister went .....Fairhaven massachusets and Acushnet should be ashamed... I cannot even have a hearing with the king mafia at BSEA......they will probally have me whaked now .5087172434

Sign in and Join the Discussion! Not a member? Register to join the discussion.