April 19, 2007

High-functioning autistic children and their parents
struggle in the public school system

Many are very bright but lack social skills

By Carol Rosen
Staff Writer

Editor’s Note: The names in the following story have all been changed as requested by the parents of the children.

What if your bubbly, happy child’s personality started to change, and he began to avoid looking you in the eye, refusing to let you touch him and complaining that there was too much noise in the house and screamed that it was driving him crazy?

Some people wake up to children like that—children with autism—every morning. One out of every 150 children has autism and simple situations such as getting ready for school can often be filled with crying and tantrums. Other situations such as a tiff with a playmate or a frustration at home could also trigger an autistic child to become upset. Yet once a parent gets their child calmed down, it’s only a matter of time before the scenario repeats itself.

Highly intelligent
The children described in this article each fall on the spectrum of autism referred to as “high functioning.” Some have a form of autism called Asperger’s Syndrome. They are probably more intelligent than most of their classmates, yet—in many cases—they have no idea how to interact with them or to read their social cues. They also universally react strongly sensory overload: too hot, too cold, too bright or dim, too loud. In addition, they are very straightforward; they call a tree a tree and have trouble discerning sarcasm or humor.

Oddly enough, being diagnosed with high-functioning autism is not a rare occurrence. Some parents, school districts and doctors claim that there is an epidemic throughout the United States but even more so in the South Bay. Most people are familiar with autistic children who have little to no interaction with anyone. The children described here may at first appear typical, but are actually highly functioning geniuses with above-average grades. But without training they are unable to function in any or many types of social environments.

“Picture a highly functioning brain,” said one mother who asked to remain anonymous, “and then fill the parts of that brain dealing with social interaction with holes, like Swiss cheese. This brain works fine solving math problems, but has no clue how to function with other humans in ANY social situation.”

Those familiar with the Asperger’s claim that many of the world’s greatest geniuses from Sir Isaac Newton to Albert Einstein to Bill Gates suffer from it.

No tact
One of the most prevalent problems with Aspergers or other high-functioning autism is the children’s behavior. Most don’t understand that it’s not in their best interests to get attention from screaming or to hit or bully someone so they will play with them. And, the children are mystified and very hurt when they get left out of games or groups because they don’t understand why they are not liked.

Parents complain that many public school administrations don’t understand the specific needs of these bright, but socially bereft children. School district officials indicate that they can accommodate and mainstream them, especially given their test scores, but many teachers don’t understand their behavior problems and have little time or patience to put up with them, especially when classes grow beyond 20 students.

Most of these children don’t qualify for an Individual Education Plan (IEP), said Lynn Stacey, the manager of special education programs for San Jose Unified School District. A child has to be unsuccessful in school to qualify for an IEP.

Everyone interviewed, though, feels that the younger these children are diagnosed, and the more social training they can receive at a young age the less they will need special classes or attention in school.

While there are strong indications autism might be genetic, no one really knows its cause. Michelle Garcia Winner, a speech language pathologist who founded a school for social thinking, has developed methods of increasing interaction between a highly functioning autistic child and his family and peers by teaching them to interact, to use their eyes and focus on others.

One of the people she’s seen since he was a teen is now a college graduate who has completed work for his masters. Winner talks about his progress, but at the same time notes that no matter what, this 26-year old can’t find a job.

New programs
Others might be luckier. “Justin” lives in the Almaden area. His parents fought with San Jose Unified School District for years, trying to get him in classes that would also educate him socially. Despite a pending lawsuit, they moved Justin to Pine Hill School’s Newton Program this January. The cost is steep, but it teaches kids with Aspergers in small classes.

“After three weeks Justin knew everyone’s name in his class. He came home from school smiling and happy. He’s never had problems with the curriculum; he learns quickly and has very high-test scores—in the 95 to 99 percentiles. SJUSD wanted him mainstreamed; he didn’t belong in special education, they said, because he was too smart. They had nothing in between, so we initiated a law suit, and are now in debt so he can get a good ‘overall’ education,” said Justin’s mom.

SJUSD’s Stacey explained that high-functioning kids might come under a 504 plan. This program is “not quite as formal as an IEP, provides for no special classes, and no funding, but it would facilitate social interaction by placing a child in clubs, or getting him a buddy,” she said.

Others haven’t been as lucky as Justin. “Nick”, whose parents live in the Evergreen area, began showing signs that “something was wrong in kindergarten. He used violence to get his way. He was very impulsive,” she said.

Nick’s parents got a psychiatrist’s diagnosis and worked with J.F. Smith School in Evergreen to set up an IEP, which was “really good. They had a really good staff and structure and were very supportive of him,” his mom said.

But there were still problems. “No one wanted to play with him because of his social behavior. He picked his nose or he pushed against kids to get their attention.”

So, she said, they tried moving him to Laurelwood Elementary, but found the staff wasn’t as supportive of Nick’s problems as the previous school. The teacher would complain that he was sleeping in class or the nurse would call to tell her to pick him up because he was sobbing in her office.

“They ended up seating him at the front of the class—further ostracizing him,” his mother added.

And, even though he had an accommodation at J. F. Smith for less homework he still would come home “and cry for two hours straight while contemplating his homework. He also put up a wall against the sensory overload he was experiencing from lights, noise etc.”

Finally, one day Nick’s mom went to observe recess. At first she was quite excited because he was playing ball with several older children, until the ball hit him on the arm. When the yard duty didn’t help, and a child deliberately threw a ball at him, she decided that was enough.

“I approached the principal who also provided no help, so I pulled him out of the school because I didn’t think Nick was safe,” she said.

After six months of home schooling, which she said didn’t work at all, a friend suggested Pine Hill School off Meridian Avenue in San Jose.

Nick’s mom says he is thriving at Pine Hill. “He’s a lot happier about school. He doesn’t complain anymore. Now he gets up, dresses and eats; it’s nothing like it used to be. He has lots of friends that are just like him. It’s wonderful to see that he’s finally found his place where before he had no place.”

The Newton program
Pine Hill has been in the San Jose area for 32 years and has always served emotionally disturbed and learning disabled kids. For the past three and a half years it has also focused on teaching high functioning autistic kids.

Greg Zieman is associate director and principal of the school. He works closely with Breenu Sra, a school psychologist with the Santa Clara County Council of Education.

“Typically these children are working at or above grade level, but they are socially withdrawn. In classrooms their behavior usually is described as non-compliant,” said Zieman. “They get placed in classes with emotionally disturbed (ED) kids, and it’s not a good mix. They replicate the behavior they see, plus they have no diplomatic skills, they say what they see and it gets them into trouble.”

Unlike emotionally disturbed students, highly functioning autistics will back down and get quiet when the stimulation causing their behavior is removed, he added. ED students tend to go on and on, while a child with Asperger's will calm down when the stimulus is removed.

“Most of these kids have caring parents who have put them in social counseling,” says Sra. “However, once or twice a week isn’t enough, they need constant ongoing training, and that’s what they get at Pine Hill.”

Social needs
The school focuses on social deficits first and academics second. Many children have no homework, because school is tiring. Also, says Zieman, they have the academic intelligence, what they need most to learn is how to get along with others, read social cues and so forth.

Newton schedules begin on Monday and Friday with sharing. Wednesday is joke day, but any similarity to public school ends there. There are only eight students per class and each student does an hourly evaluation. While each student has his own IEP, they all are taught to work together.

“The parents are blown away,” said Sra. “They aren’t getting calls from teachers and the kids actually want to go to school. They want to be in this environment.”

The reason for these changes can directly be attributed to the teachers, said Zieman. Head teacher, Ed Phipps, has had 30 years of experience with autistic children.

Rachel Dorfan, worked under Phipps for one and a half years to learn how to teach these kids. And then Phipps became her mentor. “It’s a slow process [learning to work with these children]. You have to be willing to commit a lot of extra time to the process,” Zieman said.

But Pine Hill’s program comes with a price. First, there’s a long waiting list because classes have to be kept very small and only offered in fifth through seventh grades. Second is the actual cost. If the student is referred by a public school, the cost is paid by that school and is about $38,000 per year, if the student shows up for the minimum 185 days. Parents without school referrals pay about $14,000 per year with scholarships.

School referrals
Public schools have been reluctant to refer students to Pine Hill.

One parent explained that more often than not, they have to get a lawyer and sue the district to get them to provide help of any kind. This mother explained that her son “Ben” was diagnosed at 3 years, but the district declined to accept the diagnosis.

She paid for a psychologist and psychiatrist diagnosis and then had to fight to ensure he would get the proper help. Two months ago the district and the parents settled out of court, but said the settlement, which she said is in the tens of thousands of dollars, did not cover all of their costs.

Her son now attends a first grade class within the district and has a full time aide to help with his behavior. “Ben is in an elementary school and is being mainstreamed but he has a one-to-one aide who implements an appropriate behavior intervention plan designed for him by a behaviorist.

“We are fortunate that our teacher has been wonderful. She’s been open to learning new things, things to accommodate Ben. He’s able to sit still and stay focused. When the aide is needed to help him with his behavior, she is proactive instead of reactive. She helps him by talking through his misread social cues and is helping him through his social rough spots to build his self-esteem.”

Mainstreaming
Often, once the child learns social behavior, he can be mainstreamed back into public school. For example, Carrie—who has Aspergers and ADHD—was having trouble in her public school in the Cambrian District.

“The tuition is very expensive,” said Carrie’s mom, who shares custody of her daughter with her ex-husband. “We were hoping to get the district to pay. But they wouldn’t because they didn’t feel she required a special education in a private setting. They felt she could easily be taken care of in her school.”

So Carrie’s parents, like many at Pine Hill, decided to pay the tuition themselves. “She was upset. She didn’t want to be in school and she didn’t want to be around the kids.”

Carrie spent her fifth grade year at Pine Hill and is now in a public junior high in Los Gatos. Her mom said she didn’t want to go back to Cambrian schools because the kids in Los Gatos didn’t know her and wouldn’t remember her behavior.

As for the year at Pine Hill, Carrie’s mom couldn’t stop praising it. “She was in the fifth grade in a small class and Mr. Ed, [Phipps] her teacher is just fabulous with the kids; Elizabeth is as well. They know how to work with the children. Carrie got rewarded for good habits and worked with for those that weren’t so good. If we could have afforded it, we would have kept her there even though she was the only girl in the class.”

Today, Carrie “is doing fabulously. She needed that year to gain her self-esteem and be part of the world again. She very sociable now,” her mother said.

Why don’t the public schools automatically send the children to a school that can teach them proper behavior so that these children won’t disrupt school for the children who don’t need help? The answer is not nearly as simple as the question.

Districts get paid per day for each child that attends school in that district. The district loses money when a child doesn’t attend. So the school wants as much money as possible in order to provide the best teachers and programs available to their students.

If the district determines a child needs to go into a more “restrictive” non-public environment it not only loses the money from the state, but also must pay the tuition, for example, $38,000 per year to Pine Hill.

If it is determined the child needs an aide within a public school, the school has to pay for the aide. In addition, these children require assessments, IEPs and often some sort of therapy, such as occupational therapy. Parents typically pay for psychiatric, psychological and social therapy. So, accommodating these children can be quite expensive.

Some districts have programs in place to take care of all situations. For example, the Evergreen School District works with each special needs child individually, said Gary Kishimoto, director of pupil services.

“Everything is individual,” he said. “It depends on the individual child, accommodating him with a teacher and how to work with that child.”

SJUSD has a class at Pioneer High School that works with kids that are on the high end of the autistic spectrum, said Stacey. They plan to expand that with classes at two middle schools and another high school, she added. The classes were designed by Michelle Winner who will be teaching training sessions for special ed teachers before the 2007-08 school year.

Kishimoto described Evergreen’s pre-school team, which reassess the diagnosis and develops an IEP to best provide the child’s education.

“The district has to do its own assessment. If necessary, we will provide aides for the children. Sometimes they will only need the aides for special subjects or a time of day. Programs are unique to the child. We try to keep the students in regular classes in their neighborhood schools, but if they are functioning at a lower level they may attend special day classrooms or visit with a resource teacher. We have occupational therapists, full and part time aides, behavior psychologists and behavioral aides,” Kishimoto said.

If a parent objects to the child’s program then they may discuss going to “due process,” said Kishimoto. Generally, this requires attorneys, mediators and the state listening to both sides in order to “work out the difference of opinion for a free and appropriate education.”

Too restrictive
Officials from Evergreen and SJUSD called Pine Hill restrictive because all the students are high-functioning autistics and the classes are small. “Pine Hill is a restrictive environment,” said SJUSD’s Stacey. “That’s the last place you want to send a student. You don’t want to remove a high-functioning child. A general education is the least restrictive environment. You develop playgroups, buddies and have them see counselors. A non-public school is not the most appropriate place for these students.”

“The only time we consider such as move is when we feel we can’t meet the needs of a child. It’s a really severe way to go, but we would take that stance if we are unable to modify our program enough to meet the child’s needs,” Kishimoto said.

Zieman disagrees. He says for the first time in their education these kids feel confident and make friends because their fellow classmates suffer from the same problems.

Many parents also disagree. These parents claim the only way they could get the districts to listen and/or help them was to contact an attorney and sue.

In most cases the cost of these lawsuits was staggering, far above the tuition they would pay to a private school for a couple of years of help. Many parents’ suits were in the tens of thousands of dollars, while others are well into six figures.

“If we can get a child for a couple of years, then we can send him or her back to their public school and they can be mainstreamed. The kids will be socialized and there would be few if any special needs necessary,” said Zieman. “But the districts see this as too costly and they are willing to put more money through their legal departments.”