Facing autism

By Sherry Posnick-Goodwin

Dominic, 5, plays with a puzzle at the Central California Autism Center at CSU Fresno.

A growing challenge for our school system

“If you break a pencil, is it a huge problem or a small problem?” asks Lisa MacFarland. It’s a question most teachers wouldn’t ask fourth-, fifth- and sixth-grade students. But MacFarland’s students have autism, and a broken pencil could trigger a meltdown or a tantrum in her special education classroom at Hayes Elementary School in San Jose.

There is silence, so MacFarland rephrases the question. “Is a broken pencil a big problem so you can’t do work for the rest of the year? Or is it a small problem that you can use strategies to solve?”

“It’s a small problem,” a student named Hunter replies after some consideration. “You could sharpen it or get a new one.”

MacFarland is conducting a lesson on behavioral skills and acceptable ways of interacting with peers. It doesn’t come naturally; children with autism typically have trouble communicating and socializing. She asks her students to demonstrate “expected” behavior that will have positive results (calmly answering questions), and “unexpected” behavior (yelling or name-calling) that is upsetting to others, so they understand the difference between the two. Students also practice recognizing facial expressions and connecting them with emotions.  

MacFarland’s students are part of a growing population. In 2009, the national Centers for Disease Control and Prevention reported that one in 100 children has autism — a 50 percent increase from 2007, when the government estimated the rate to be one in 150. A study from the National Survey of Children’s Health also concluded that one in 100 children has autism. That is more than triple the 14,000 youngsters with autism at the beginning of the decade, making autism the fastest-rising disability. It’s believed to be one of the most expensive and most challenging disabilities facing public schools today.

Even before the economic crisis hit, the California Department of Education’s Autism Advisory Committee reported that California schools lack a cohesive plan to meet the challenge. The committee’s 2008 report, the most current issued by the state, cites a lack of teachers who are trained to work with children who have autism, funding problems, and “a lack of coherent, universally accepted, effective educational practices” for educating children with autism.

The panel concluded that so many “intensive services” are needed for students that autism threatens to “overwhelm local educational systems.”

The California Legislative Blue Ribbon Commission on Autism, created in 2005, also issued a dire warning: “The dramatic growth in the number of children affected by autism spectrum disorders now constitutes a public health crisis.”

In 2008 it cost $36,000 annually to teach each student with autism, compared with $8,558 for regular education students, according to the San Francisco Chronicle, which noted that the number of children with autism in public schools is increasing by 19 percent a year. The newspaper also reported that schools in California transferred more than 30 percent of regular education dollars to special education in 2008, compared to 4 percent in 2000, and that “regular education is a virtual ATM card for special education.” The most expensive component for schools is providing one-on-one aides for students with autism.

“The fiscal impact can be especially hard on rural schools,” says Sue Allen, a member of the Middletown Teachers Association who teaches full-inclusion kindergarten at Coyote Valley Elementary School. “It ends up taking a lot of our general funds.”

While numerous bills have been introduced in the Legislature in recent years to deal with the crisis, all have been vetoed by the governor, says Fred Balcom, director of special education for the California Department of Education. “These bills would have supplied funds to get better training for teachers and resources to the classroom. Apparently the governor thought it was not all that important.”

Autism needs to be a higher priority in Sacramento, asserts CTA Board member Tyrone Cabell, a special education teacher and member of the Los Angeles County Education Association.

“It’s a challenge that needs to be addressed,” says Cabell, noting that out of 678,105 students in special education, 53,183 are on the autism spectrum. “Schools need more money to help these children — and to help them early, because the earlier you offer intervention, the better they do. We need more money for research to find out why autism is a growing problem. And we need more money to train classroom teachers to work with this challenging student population.”

The truth about autism

Autism is a complex neurological disorder that affects a person’s ability to communicate and interact with others. It is defined by a certain set of behaviors including repeated words or motions, fixation on certain subjects, sensitivity to light and sound, little or no eye contact, and difficulty forming relationships. It is a “spectrum” disorder that affects individuals differently and to differing extents. The condition is four times more likely to occur in boys than girls. Some individuals with autism also have mental retardation, while many are extremely bright.

“They might learn very well, but they are not great social learners,” says Peter Mundy, director of educational research at the UC Davis Mind Institute, which is devoted to the research and treatment of autism. “Children with autism have a difficult time paying attention to the right things at the right time when it comes to learning from other people. The biggest misconception is that most of us think children with autism don’t respond well to intervention, but we’re beginning to see that they do respond pretty well to intervention. Many people think of children with autism as flapping their arms or spinning in some corner, which was the prototype in the ’60s or ’70s. Not to say that children don’t engage in that type of behavior, but many children with autism don’t resemble that prototype at all, which is very surprising to teachers.”

MacFarland says it is a misconception that children with autism don’t have a sense of humor. “That is so false. We laugh all the time in my classroom. Even if they don’t always get humor in the same way we do, they definitely understand humor in their own way.”

“Another misconception is that they are not affectionate and can’t form relationships,” says MacFarland. “I’ve had relationships with every student on the spectrum. Of course it’s different. Some kids may not like to be touched at all, and other kids want a bear hug.”

For those living with autism, the world can be loud, unpredictable and frustrating, she explains. “They don’t navigate socially the way typical students do. The playground may be the worst part of the day for a child who has autism, whereas for other kids, it’s the best part of the day. Walking up to another student and saying ‘Can I play ball with you?’ is a very foreign concept. They feel very isolated.”

Why the increase?

There are differing opinions about why autism rates have skyrocketed. Some parents and celebrities who have children with autism blame vaccines, but studies have shown there is no connection.

“It’s unclear whether or not we’ve simply changed the way we identify children with autism and improved it — or whether something else is going on,” says Mundy. “Changes in methods of identification may have increased the number of children identified. Or there may be some change in the environment — or a change in some unknown process — leading us to identify more children.”

It wasn’t until 1994 that the present diagnostic system came into use, adds Mundy, who explains that diagnosis relies on a lengthy interview in which a specialist observes and assesses a child’s behavior. Many children with autism appear to behave normally until around age 3. However, a recent study from the University of Memphis reports that computer analysis of the babbling of children as young as 10 months has succeeded in correctly diagnosing autism 85 percent of the time.

Some believe autism is being “over-diagnosed” and has become the disability du jour.

“When it comes to being on the spectrum, it’s hard to tell if it’s being over-identified,” says one teacher. “I’ve heard of some parents who have been pushing for the diagnosis so they can get services for their child. I think sometimes that may play into it.”

And there’s the “Geek Syndrome” theory offered at www.wired.com. This premise maintains that a disproportionate number of those in the high-tech industry have autistic tendencies and perhaps even Asperger’s syndrome — a higher-functioning form of autism. According to this theory, technologically adept and “geeky” individuals find similar “soul mates” in the workplace, marry and have children that wind up being on the autism spectrum.

“In another historical time, these men would have become monks, developing new ink for early printing presses,” says Steve Silberman, who authored the article. “Suddenly they’re making $150,000 a year with stock options. They’re reproducing at a much higher rate.”

It’s true that genetic predisposition does play a role in autism. For example, if one twin has autism, the other twin is likely to have it, and one child with autism in a family increases the chances that another child will be born with autism. However, autism affects children born to parents in all occupations, socioeconomic categories and backgrounds.

Education is paramount

Education is considered to be the primary treatment for autism, which has no known cure. Studies have shown that the earlier education begins, the more positive the outcome is likely to be.

But educational services are fragmented. The California school system offers more than 40 separate services for students with autism. These services include behavior intervention, or helping students behave in social situations; occupational therapy, or helping them with practical motor skills; speech and language therapy; and one-to-one assistance in the classroom from a paraprofessional. Some students are in mainstream classes most of the time and are pulled out for special services, while others are in self-contained classrooms most of the day.

“Pick any two districts with similar numbers of students with autism, and you’ll find little consistency in services offered or students served,” notes the San Francisco Chronicle. “Access to services often depends more on where children live, rather than what they may need.”

“Autism presents itself in lots of different ways, in a wide variety of children with a wide variety of needs,” says Mundy. “This creates complications for schools when it comes to providing services for all these children. The needs of some children are being met in public school, but it’s often hard for public schools to have all of the expertise to the meet the needs of all these children. There are many children whose needs aren’t being met. But I’m very hesitant to blame public schools for that; the system is the problem because there isn’t enough money to support expertise and services for all children with autism.”

Mundy believes the state is moving in the right direction with the Added Authorizations in Special Education (AASEs). The added authorizations are similar to those for general education, such as BCLAD (Bilingual Crosscultural Language and Academic Development), and are added to an existing special education teaching credential. Each covers a specialty area, such as autism.

The holder of the autism authorization is trained to conduct assessments, provide instruction and provide services related to autism. The autism authorization will be embedded in all special education teaching credentials issued after Jan. 1, 2013. It may now be earned at California State University campuses in San Bernardino, Dominquez Hills, Fullerton and San Marcos, and online from the University of California system (see related story).

The new voluntary authorization may be helpful to special education teachers, but it’s unavailable for general education teachers who need help teaching students with autism.

According to federal law, students with disabilities must receive an education in the “least restrictive environment,” which means mainstreaming wherever possible. But full inclusion can be extremely challenging for some general education teachers — especially when they lack training.

Challenges of mainstreaming

“It can be difficult for teachers,” acknowledges Rachel Thomas, president of the Manhattan Beach Unified Teachers Association. “When children want to make noises in class and walk around the room during a lesson, it can severely impact the rest of the kids who need to learn and focus. General education teachers don’t want to aggravate or upset these kids. They want them to do well and learn. But sometimes they can prevent other kids from learning, which can be frustrating for teachers.”

Thomas adds that her district hires consultants to provide training to teachers who have students with autism, and teachers greatly appreciate this support.

“The challenge is helping children with autism fit into the structure of the school and helping them deal with their own frustrations,” says Sue Allen, the kindergarten teacher in Middletown. “For the most part mainstreaming is good, and other kids learn to accept children with autism and play with them quite well. Students with autism have more of a sense of belonging and learn to socialize. Because they are special and amazing in different ways, they make me a better teacher for all my students.”

Educators say that mainstreaming children with autism may depend on what parents want rather than what school staff think best meets the needs of the child.

“Sometimes, inclusion is not the answer,” says Madeline Cabading, an education support professional at West Portal Elementary School in San Francisco. “Sometimes it’s more about making the parent happy than what’s right for the child.”

Cabading, a member of United Educators of San Francisco, works one-on-one with children who have disabilities. She says her school is a “model school” for full inclusion, and that it works extremely well most of the time. But sometimes it doesn’t.

When children are put into classes that don’t fit their needs, even with an aide, they may become frustrated or even violent. And parents may be overstressed with the everyday challenges they face as well. Some parents hire “advocates” from autism organizations — often lawyers — to become involved in the decision-making regarding their child’s education.

“All of us want what is best for kids,” says Thomas. “It’s very frustrating when teachers, school psychologists, counselors and others make recommendations — and parents choose to ignore them.”

School districts are fearful of autism-related lawsuits. The Escondido Union School District, for example, advised teachers not to be interviewed for this story, even to highlight their excellent program for full inclusion. Teachers say administrators in their district expressed concern that a litigious parent might scrutinize a California Educator story on autism and find fault in teacher comments. Many educators statewide approached for this story say they would like to be interviewed, but are reticent to discuss autism.

In June, the Supreme Court upheld a ruling that parents of special education children may seek government reimbursement for private school tuition, even if they have never received special education services in public schools. Nationally, about 90,000 special-education students are in private schools, most of them referred by their public schools, notes the New York Times. Here in California, parents of children with autism have requested that school districts reimburse them for out-of-state education, for out-of-state travel to visit their children, and even for wear and tear on their automobiles or new tires for their cars.

In 2004, the Manhattan Beach Unified School District paid nearly $7 million to a student with autism and his parents for failing to provide an “appropriate” education. Teachers in the district are forbidden to discuss the lawsuit under the terms of the settlement. Thomas, however, will say that special education costs related to autism are having a big impact on public education everywhere.

“Special education costs are rising so fast that it affects every aspect of a school’s ability to educate all of our students and provide programs they need, as well as giving teachers a livable wage,” says Thomas. “Our special education costs in this district are 25 percent of our general fund for 12 percent of our student population, so it’s a significant impact.”

Despite the original commitment of Congress to contribute 40 percent of the funding for states’ special education services under IDEA (Individuals with Disabilities Education Act), the federal government historically has provided only 8 percent of the funding, leaving state and local governments to fund the remainder of program costs, totaling approximately $38 billion dollars nationally, according to the Center for Applied Special Technology (CAST), a nonprofit research and development organization that works to expand learning opportunities for individuals with disabilities.

“We love these kids and need adequate resources to educate them in the best way that we can,” says Thomas. “It’s time for the government to step up and pay its fair share.”

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