A World of Their Own

Growing Population

Francis, Patrick, Kyle, and Ben are among the 134 students -- out of AISD's 9,400 special education students -- diagnosed with autism. Except for one known genetic factor, called Fragile X Syndrome, the causes of autism remain a mystery. Not all children with Fragile X develop autism. Nor do all children with autism carry the Fragile X gene. Experts and parents continue to study and theorize about the disorder, which is neurological. There is still no accurate indication if cases, outside of Fragile X, are based on environmental or genetic factors. Some are searching for cures, others looking for ways to break through, to find, if not a cure (some are offended by the suggestion that a "cure" is needed), a way to help children with autism grow and reach their greatest potential.

Medical and education experts agree that the number of children diagnosed with autism is growing at an explosive rate. According to the U.S. Department of Education (USDE), in 1992 there were 1,444 students diagnosed with autism in Texas schools; in 1997 that number had more than doubled, to 2,933. It is possible that this explosion in diagnosis means there are more children with autism. But it is also possible that the growing ranks are due to more accurate diagnosis of children who previously were mislabeled. Mislabeling has not been totally inaccurate; often children with autism are multi-disabled -- also having, say, mental retardation. Now that experts are better able to recognize and label children with autism, there is a concern among the parents of these children that educators need to do more to both deal with the current population as well as to prepare for the anticipated influx of children with autism.

In September, 1996, the USDE, which hands down most of the laws and rules regarding special education -- primarily via IDEA -- ran a standard, random check of school districts around the nation to gauge districts' compliance with IDEA. Austin was a chosen district.

A letter from Thomas Hehir, director for the Office of Special Education Programs (OSEP) for USDE, to Mike Moses, Commissioner of Education for Texas Education Agency (TEA), reported that AISD did not meet some IDEA requirements. "OSEP noted continued problems in several areas," wrote Hehir. "OSEP is particularly concerned that TEA has not consistently monitored public agencies in order to identify and ensure correction of public agencies' deficiencies. Continuing deficiencies were also noted regarding requirements for ensuring that students with disabilities receive all the services they need as part of a free appropriate public education, and ensuring that students with disabilities are placed in the least restrictive environment."

The letter confirmed what some parents had been trying to tell district administrators for years: that there was a serious problem in AISD's handling of children with disabilities such as autism. But Julie Lyons, executive director of Special Education/Health Services for AISD, defends the district's evaluation. "The team of [federal] monitors spent one day in AISD, visiting one campus and reviewing a small, random sampling of student folders," she says, adding that as a result of USDE's visit to Texas, TEA was required to develop a corrective action plan to address statewide compliance issues. AISD developed corrective action plans related to three areas: least restrictive environment, specifically related to students with mental retardation, re-evaluation timelines, and transition services for students aged 16 and older.

The root of the tension between parents and special education administrators has to do with AISD's lack of a district-wide policy for children with autism. The very words "case-by-case basis" generate vastly different reactions. While Julie Lyons asserts positively that all students are handled on a "case-by-case basis," some parents argue that "case-by-case" is code for the lack of any coherent policy.

"It seems the district would rather be reactionary and deal with individual crises one at a time than to be proactive and develop an appropriate, long-term program," says Amanda, Patrick's mother. "One of the biggest disappointments has been the district's decision to dissolve the Autism Advisory Committee, whose members included AISD staff and parents. When it existed, this group met during the school year and discussed issues involving autism in the district."

Some say the problem is largely one of poor communication between parents and educators. "Autism is complex and hard to decipher," explains one AISD teacher who asked to remain unnamed. "Each student is complex and engaging. And everything around the school situation [and autism] is challenging and emotional. I'm not surprised that conflict and misunderstanding are a part of the education of people with autism. You're working in a highly charged environment, and you're dealing with all the personalities of the parents, administrators, educators, and support personnel. Given all these factors, sometimes just communicating effectively can appear to be an insurmountable task."

As an example of communication problems that sometimes crop up, this teacher offers, "Information sharing is an important part of working together. But at the same time, I've seen teachers who, upon being given reading materials by parents, feel insulted because it's their belief they are already doing the best possible work with children with autism. Or they feel threatened -- that their boundaries are being crossed, and they are being told what to do by parents who, to their thinking, are only trying to help."

The Daily Challenges

The word "autism" means, literally, "in a world of your own." Identified in the 1940s, simultaneously and separately by two researchers -- one in the U.S. and one in Germany -- the disorder continues to be misunderstood by many. Autism is known as a "spectrum disorder" that falls under a larger umbrella of neurological disabilities known as Pervasive Developmental Disorders. And even within the specific subset of autism, there is a wide range of behaviors that can bring a diagnosis of autism. Stereotypes and cultural references abound. Those unfamiliar with the disorder might associate the word "autism" with the image of a silent, withdrawn child who bangs his head against the wall, or rocks constantly, with no apparent awareness of those around him. Then there's the Rain Man image, with Dustin Hoffman's character in that movie perhaps being the best-known portrayal of a person with autism.

Denise Brady, a lawyer and lobbyist for the Arc of Texas

Denise Brady, a lawyer and lobbyist
for the Arc of Texas

photograph by Jana Birchum

Asperger's Syndrome is the type of autism at the higher, or more developed, end of the spectrum. People with Asperger's Syndrome often excel academically but -- not unlike those with other variations of autism -- exhibit atypical communications skills and have trouble fitting in with others due to social skills that are considered below average. There is a forthrightness in those with Asperger's Syndrome that is off-putting to people who do not understand it. For example, many people with autism have hyper-sensitivity to sound or touch or smell. If exposed to a noise or odor or touch that, literally, causes physical pain, a person with Asperger's Syndrome might react vocally and sometimes physically. A recipient of such commentary might think of the person with Asperger's Syndrome as rude or purposefully hurtful -- another one of many myths associated with autism that make life all the more challenging for those with autism and their families.

To meet the daily challenge, as well as to plan for the future, some parents augment their children's education via outside sources. Patrick spends an enormous amount of after-school time learning skills to help him move toward an independent life as an adult. "We pay out of our own pocket [$135/week] for one-hour tutorials on Mondays and Fridays, two-hour tutorials on Tuesdays and Thursdays, and physical therapy on Wednesdays," says Amanda. "Add this to the speech therapy and occupational therapy, and Patrick has something every afternoon after school and on Saturday," she adds. "After a full day of school, he's bombarded with more because I've heard something hopeful. I think you call it hope. Maybe you call it desperation."

Amanda feels strongly that AISD could be doing more, during the school day, to help Patrick advance. "Working with AISD is a full-time job," she says. "While we have had some excellent teachers over the years, most of what my son has gotten has been because we have pushed for it."

There is no mandatory certification criteria for teachers who work with children with autism. While teachers with degrees in special education monitor, evaluate, and sometimes teach these children throughout varying portions of their day, children with autism who spend time in mainstream classes are being taught by regular education teachers who are expected to learn how to best deal with them. Some weekend and summer seminars are offered, but most of the teacher training takes place during regular time, a sort of baptism by fire.

The district has one full-time and one part-time expert to aid these teachers. Ray Condon, the full-time expert, has a master's degree in Deaf/Blind Multi-Handicapped education. Part-timer Kelley King has a degree in Speech Communication Disorders (and is, coincidentally, the mother of a child with autism who attends school in another district). There are also special education teachers, aides (no certification or college degree necessary), diagnosticians, and behavioral specialists who observe and strategize to assist regular education teachers in learning how to best help their special education students. And while this sounds like a significant number of educators, some parents disagree. "We have a lot of specialists who are very well-trained," says Francis' mom, Catherine, "but they aren't teachers; they're not the ones in the classrooms with the kids. Some of the regular education teachers, for whatever reasons -- lack of time -- wind up not getting sufficient training."

The Daunting Process

When a child in AISD is labeled as having autism, a process begins that is used for all special education students. An Admission, Review and Dismissal (ARD) committee, composed of the student's parents and school staff, meets to discuss the needs each child must have met in order to legally meet the definition of an "appropriate education." The result is an Individualized Education Program (IEP), a written plan tailored for each student and mandated by IDEA, detailing special education and related services that must be provided to all students in special education programs. During the meeting, parents will voice what they feel their children need for an "appropriate education." If there is any disagreement from staff, the meeting continues until either a consensus is reached, or the parents sign the IEP noting they disagree with the recommendations. At this point, the agreed-upon goals are carried out, and an appeal is made to TEA for an administrative hearing to help the two sides hammer out an agreement on the disputed areas of the child's education plan.

This seems to be a sound blueprint. But getting parents and school districts to reach a consensus on disputed areas of an IEP is a difficult process, says Denise Brady, a lawyer and governmental affairs specialist for The Arc of Texas (formerly the Association of Retarded Citizens/Texas) . Not surprisingly, there is a lot of litigation over special education cases. "IDEA is a really good law," she says. "The problem is that it's not enforced and that there's room for a lot of interpretation."

Brady points out other problems with implementing the federal law and IEPs. "The law does not guarantee parents to get everything they think their child needs. The law doesn't require a 'Cadillac education.' It says children are entitled to an appropriate education, and appropriate can be pretty minimal. Court cases have held that parents don't have a right to the 'best.' The district is not allowed, legally, ever to say 'We don't want to pay for that,' or 'We can't afford that.' Instead, if a child needs an expensive piece of equipment [that doesn't fit the budget] the district will instead argue: 'Your child doesn't need that equipment to benefit from education.' But you'd be crazy to think budget doesn't impact the deliberations of the committee. When administrators say that money is not an issue, that they do whatever a child needs, that's just not realistic."

Perhaps most daunting for parents seeking things for their kids through ARD meetings, is what they go up against. "The family is totally outnumbered at an ARD," says Brady. "There will be the principal, a special education teacher or service provider, the regular education teacher, and a diagnostician. We get phone calls from teachers who go to ARDs and feel like they were very uncomfortable with the decisions that were made there, but didn't feel like they could speak up -- teachers are not supposed to disagree with administration."

Even when an IEP is in place, there are questions of how effective the plan is, of whether the document actually motivates teachers to closely follow the specifications and attain the listed goals, or if the paperwork just gets filed away, an added burden to those who are already considered overworked and underpaid. Teachers who are asked not to deal with just one or two goal-oriented IEPs, but sometimes a dozen or more at a time, in addition to being asked to meet the needs of their regular education, non-IEP students, often feel overwhelmed by this burden. Jules, Francis's father, feels that too often the IEP is used as a means of false placation. "We spend hours and hours writing an IEP and then ... We have had years when we felt that no one actually consulted the IEP. They pulled it out to see if they'd met the goals and they hadn't. They don't always hold up their end of the bargain."

But AISD's Julie Lyons disagrees: "All of our training is that the IEP is a living, breathing document that has to be monitored, reported on, with progress discussed with the parents. You've got to be able to articulate, at the year's end, if not sooner, if progress has been made. And you need to base that on data."

Varying Experiences

Not all parents are displeased, of course. Sandy Lowe, mother of Ben (see "Ben's Turn," below) and a lawyer who happens to work for TEA in the area of special education, has had many good experiences as the parent of a child with autism in AISD, though life in the school district for her son has not been complete smooth sailing.

"I feel like Ben has made tremendous progress through his time at AISD. We were very lucky," says Sandy. She gives a lot of credit for Ben's success to former Casis Elementary principal Amy Kincaide, but she recognizes that her own experience with TEA helped her as well. "I would not be so naive as to say that I don't think my job has had some effect [on the way I've been treated]. But I don't feel like that was the case at Casis. I don't feel like my job made those teachers love my child as much as they did and be willing to work with him the way they did."

Ben Lowe

Ben Lowe

photograph by Jana Birchum

But another parent interviewed for this story says their child was not served well at Casis under Kincaide. The district might argue that Kincaide, and other AISD principals, deal with parents and their children with autism on an individual basis, but obviously, the parent with the dissatisfactory experience views "case-by-case" as being disadvantageous, suggesting that there is a glaring lack of consistency that occurs in programming, sometimes even at the same campus and with the same administrator.

Transition from one placement/school to another is a notoriously difficult time in the life of a child with autism, and every change requires numerous considerations and decisions about what will work best in providing an appropriate education. IDEA requires that ARD committees give first consideration to placing a child in the school zoned for the child's neighborhood, or "home school," but sometimes the parents and the ARD committee agree that a different setting is better suited. A child could, for example, be transferred away from his home school during elementary years, because the ARD agrees there is a more suitable school. Then, for junior high, the student might be transferred back into a school zoned for his neighborhood, if that school is deemed capable of providing the most appropriate education.

O. Henry Middle School is not Ben's "home school," but most of the students he'd been with at Casis were moving there, so the ARD committee reached consensus to have Ben attend this school with his peers rather than have to face the challenges of adjusting to both a new peer group and a new school. Though Ben did get to stay with his peers, his transition was not completely smooth. "Ben has a severe problem with hearing sensitivity," says Lowe. "If he's put in a situation where he cannot cope with the noise, he will scream at people. We spent two hours last spring developing an IEP for him and it specifically stated that he was not to be in physical education -- that he could not handle the noise of a bunch of kids in a room with a high ceiling. Well, school started, and sure enough, they put him in a PE class. One day, he didn't get his name called out and he just became berserk. Two boys who are friends of his tried to help him and he hit at them."

After that incident, the principal asked Lowe and her husband to keep Ben home from school for a day, an action Lowe terms "inappropriate." In her opinion, "I felt like Ben was being punished for his disability, and that the school had put him into the situation." Since the physical education mistake was resolved, Lowe says, "Ben has had a successful year."

Lowe could have taken legal action when Ben's IEP was not followed point-by-point, but she chose not to. "It doesn't help your relationship with the school. I have found, if you have a child with a disability, you have to work with the school people. If you set up a very hostile, adverse relationship, it does not help the child."

But should parents of children with disabilities have to work so hard and hope for a principal with the necessary vision and compassion to treat their children with a respect they feel, too often, is lacking? Unfortunately, those in charge of hiring cannot legislate compassion and common sense. There is no predicting how an incoming principal will decide to deal with special education at his/her school. And there are allegations that some principals try to avoid having special education students placed at their campuses, suggesting that other schools are "better equipped." While AISD's Lyons insists that parents who request home school placement will be accommodated as best as possible, as Catherine puts it, "Why would I want my son at a school where they clearly don't want him? Should I fight that battle only to have him be swallowed up? Or do I keep him in a school where they have an appropriate setting for him?"

The Future

Parents who are most vocal in their dissatisfaction stress that they are thinking of the big picture, not merely voicing unhappiness with their personal situations. "We would like for new parents coming in not to have to turn over the same stones," says Jules, who questions why there is not a long-term, written plan to map out the future for the expected growth in AISD of children with autism. Last summer, AISD commissioned a national expert on autism, Nancy Dalrymple, to target ways the district could improve the current experience of students with autism and suggest ways to make those changes. She met with parents, teachers, and AISD staff, but parents have never been able to review her findings.

When first asked if a long-term plan for children with autism was on the horizon, AISD's Lyons said she had no plans to develop a program or long-term written plan focusing specifically on children with autism. Later, she amended this, saying that AISD does have a plan to address the needs of students with autism, that an autism work plan was developed as a result of Dalrymple's visit last summer, and that a draft of a handbook for parents of students diagnosed with autism has been produced, and the the final version should be available to parents in the near future.

Denise Brady views the dissent between parents and AISD administration philosophically, pointing out that all relationships in life involve tension, and that it is this tension that leads, hopefully, to compromise and solution. But still, she firmly believes that TEA and AISD could be doing far more to alleviate the current stress, the burden parents feel at having to sometimes struggle daily just to ensure what IDEA says is the legal right of their children. As an example, Brady points to the substantial data TEA has gathered on special education students and explains how this data is not used effectively. One bill filed in the Texas Legislature attempts to beef up the compliance system by making TEA utilize data that the schools already collect, as well as data collected from the TEA's complaint line, to identify problems and trends. "That's why school employees are resentful," says Brady. "They feel like, 'We spend so much time on the paperwork for these kids and then it's never used.' It's a waste of their time."

Their feelings are not unlike the feeling of parents who spend so much time going to ARDs, preparing IEPs, struggling for an across-the-board change that will benefit not only their children, in a way they see as legally required, but future generations of children labeled with autism as well. Sadly, they struggle sometimes in vain. Kyle was recently placed in a residential facility because he was deemed violent. His mother, Sara, feels AISD has failed her child. Yet she continues to hope, along with the parents of other children with autism, that one day AISD will better address the needs of the children, by developing and documenting a long-term plan for children with autism. And implementing it.

The anonymous AISD teacher quoted earlier thinks that the best approach would include the current case-by-case approach as well as some broad, systemic changes. "We need case-by-case," he says, "Because maybe no other student with autism needs headphones. Maybe no other student has a hard time with the smell of the cafeteria. But we need systemic consistency because every student needs to be appraised in the same, equal way."

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