Dark-haired and soft-faced, Elliot Bennett's "a noodle" -- so affectionate and sweet, the other kids at Bristol (a public grade school in Webster Groves) fight over who gets to sit with him at lunch. Elliot doesn't much care; he likes the routine of third grade and finds his schoolmates' familiar faces as comforting as the chocolate milk. But whenever the cafeteria chatter confuses him, or the steamy smells and bright lights become overwhelming, he slips like a scuba diver into a cool dark world that's all his own.
Because he's autistic, Elliot's not as verbal as the other kids, and sometimes he hums or jabbers during quiet time. Used to it, his classmates don't even look up. But if he wanders, pulled by invisible strings of distraction, they steer him back to his desk ("C'mon, Ellie") or nudge him into line. They know he loves P.E., the whirl of energy, the steady supporting hand of the coach -- but all that sweaty thudding activity makes structured concentration even harder. So another student usually offers to replace the panting teacher's aide as Elliot's partner, holding his feet for sit-ups.
This, in education-speak, is "inclusion." Elliot only leaves Mrs. Faulkner's room to do special drills and work on language, whose rules came to him like turtles through molasses. Otherwise, he's in class with kids his age who live in his neighborhood, not closeted with a small, silent group of autistic kids. He's learned to ride a bike, add numbers, make choices, follow along. There are small hurts -- at the start of the year, everybody else got a big worm to color, and now they're doing a research project on the states, and Elliot has to go do his drills instead. But at math-circle time, his teacher asks him questions along with everybody else, smoothly altering the level of abstraction without a pause. When Elliot answers, promptly and correctly, one of his classmates nods with satisfaction.
The other students are determined to win a response from this unfathomable classmate -- a boy who's quick to give hugs but rarely starts a conversation; who's as gentle as a rabbit but seems achingly alone; who stacks his books with precision but feels the chaos inside. Elliot's wide open to the whole world -- as though somebody sanded the protective coating off every nerve ending and left him nowhere to hide. You'd think the other kids would attack like sharks. Instead, quick when nobody's looking, a little girl kisses his cheek. Others routinely ask him practice questions, monitoring his progress like tiny therapists.
They help Elliot so readily, in fact, that his real speech therapist decided she'd better give a talk about "enabling." His mom, Gayle Bennett, was fine with that; she and Elliot had given talks together back in kindergarten and first grade, so the other kids could understand him better. Maybe this time he could demonstrate some of his drills, show them what he can do. Interested, Gayle sat in on the talk. And came home in tears.
"There was this big word on the board, 6 feet by 2 feet: DISABILITY. Then she said, 'Does anybody know this word? Everybody say, "DISABILITY." Who in this classroom has a DISABILITY?' They all raised their hands and pointed to Elliot. And he just sat there, like a trophy, while she talked about him. She wasn't going to include him at all."
This therapist -- a Special School District "inclusion facilitator" -- has helped the Bennetts greatly in the past, and they're quick to admit that "she's one of the best." But that day, engulfed by maternal fury, Gayle vowed to "make her feel what Elliot felt. After the talk, she went up to the therapist, who was pregnant, and blurted, "How are your HEMORRHOIDS? Are they purple? Do they itch? Are they warm?" She sighs. "It's not the words -- I would have said he had a disability called autism, too. But I wouldn't have spent half-an-hour on it. All we see in this society are the differences. If this had been these kids' first impression of Elliot, they would have thought of him as 'Elliot, the kid with the disability.'"
Fortunately, these kids have known Elliot for two years. "We could paint his face purple and they'd still love him," Gayle remarks, her voice lightening. "They're smarter than us. They have done inclusion."
Inclusion is the most complicated challenge to hit the school system yet, and autism -- the most mysterious and misunderstood disability -- has become its acid test. How do you "mainstream" a child who can't communicate how much he knows; has trouble meeting your eyes; goes rigid or runs away from any social expectation; hears every bell and buzzer as a painful red scream slicing the world in half? Autism's characteristic symptoms interrupt the very process of socialization, and its separateness blocks the lockstep conformity on which educational institutions rely.
Of course, Elliot's not the movie-of-the-week autistic child, scripted for hostile indifference, mutely rocking and frenziedly head-banging until a loving teacher breaks through the wall. But that child's a myth anyway. No two cases of autism are alike. The formal diagnosis spans mysterious problems with relationship; language (both speaking and understanding); stuck-in-concrete thought processes; distorted sensory responses and inexplicable movements (often compulsive spinning or hand-flapping). Temple Grandin, the famous autistic livestock-facility designer who's earned a doctorate and written books about her experience, describes the continuum as running "from somebody who's low-functioning, nonverbal with epilepsy and immature brain development, to somebody with moderate autism to somebody like me, to Asperger's syndrome, autistic tendencies or pervasive developmental disorder -- and go a little past that and you get Bill Gates. Or my grandfather, who invented the automatic pilot."
Grandin's in favor of inclusion, "as long as it's practical. You have to make sure that it's not used as an excuse for not giving services, and that the kid's really integrated, not over in a corner rocking." Real integration means modifying coursework so kids can do simpler or different tasks within the same curriculum, participating in group discussions however they can. But it also means preparing the other kids, modifying the physical environment. "Sensory problems are variable, so be a little bit observant," advises Grandin. "Does he cover his ears with his hands? Put a little tape on the bell and don't tell anybody. And try old-fashioned lamps -- fluorescents' flicker is like a strobe for some autistic kids."
The happiest stories of inclusion start early, when autistic children's minds are malleable enough to absorb language and behavior from classmates who haven't yet been conditioned to fear them. Yet in St. Louis, the usual procedure is to stall, begin with an all-autistic classroom and move toward inclusion only gradually. By the time administrators are ready to try, the child's receptivity has turned to rigid habit and frustrated outbursts; the regular teacher resents the incursion; and the other kids have learned to hate differences.
The only thing worse is moving backward. A teacher who once worked at an inclusive preschool in the city remembers autistic toddlers who came in silent as stones: "Within a few months, because of the other children, they had a 100-word vocabulary." Yet when it was time to transfer into a city public school, often they were thrown back into a self-contained classroom. "We had one boy, he was making such great strides it was unbelievable," she murmurs. "He longed for attention, he was starting to talk and play -- and they put him in a self-contained room where the kids weren't talking. It just broke my heart."
When Gayle Bennett asked about Elliot's grade-school options, all the St. Louis County Special School District (SSD) had to offer was a partially integrated classroom in Fenton (30 minutes of rumbling, whizzing freeway traffic each way) or an all-autistic classroom at Litzsinger, one of the district's special schools. She reluctantly chose the latter. Then she met a mom whose autistic child was in regular school. "I didn't even know that was an option," exclaims Gayle. "It's federal law that SSD is supposed to tell us, and they didn't. So we asked for inclusion, and they said, 'No, we don't know him well enough.' He'd been there two years and they didn't know him well enough?"
Judy Wollberg, director of curriculum and staff development for the embattled SSD, says Gayle's right: "It is the law. She should have been informed." That out of the way, Wollberg tries to explain the typical special-ed view: "'There has never been a child like yours at this school; I feel uncomfortable giving you this option because I know what a war it's going to be.' I think as special educators we have too often said, 'Trust me,' rather than, 'Let's work this out together.' Educators are realizing that the old Statue of Liberty routine -- give me your tired, your hungry, we will protect them -- is not appropriate. In fact, it's disrespectful.
"We are in a time when inclusion is not the habit," concludes Wollberg. "Both general and special-ed teachers are acknowledging their insecurity. If you're the parent, what are you going to say: 'Oh, that's OK, be insecure with my child?'
With a more experienced parent serving as her advocate (autism's not only a small world but a fiercely supportive one), Gayle finally negotiated Elliot a place at Bristol School. Then came the fight to get him a "one-on-one" aide (a misnamed but often crucial teaching assistant who can ease Elliot through the day's transitions and challenges, lifting that burden from the regular teacher but melting into the background by helping the other kids, too). "As of two weeks before kindergarten, he wasn't going to have one," says Gayle. "SSD's regional director told me they didn't have the funds. The same thing happened again before first grade."
In other words, even if you win the big battles, the skirmishes continue. When Elliot was first included, the Bennetts went to observe a few classes. "The gym teacher told each kid, "You did such a good job, here's a piece of candy!'" recalls Gayle. "And then here comes our son reaching, and she says, 'No, Elliot, you don't get candy because you didn't cooperate.' She'd probably said, 'Skip,' and he didn't know the word. I thought my husband was going to cry."
This summer, the Bennetts are moving to Madison, Wis. "They're better at inclusion," explains Gayle, "and we're tired of fighting."
Classifiable autism is relatively rare, but its incidence is increasing. In the St. Louis area, 333 schoolchildren currently meet all the diagnostic criteria, and hundreds more have enough symptoms to ruin their school lives without the label. Statewide, the number of diagnosed children shot up 56 percent between 1995 and 1997, and it continues to increase. Some say we're diagnosing better; others think autism is a cumulative genetic disorder, moving from quirkily eccentric in one generation to recognizably autistic in the next. The cause is still unknown, the spectrum of symptoms and abilities wide and incredibly variable.
So how do you educate kids you can't even classify?
We used to throw the worst away, warehousing them in institutions or making them "family pets," in one expert's bitter phrase. Then, in 1975, the federal government passed the Individuals with Disabilities Education Act (IDEA). New educational strategies blossomed, and the good teachers learned that, with the right balance of individualization and structure, kids with autism could make remarkable progress -- especially if you started early.
Now IDEA's even stronger, thanks to a 1997 amendment whose implementing regulations were just released. They mandate high expectations, parental involvement, thorough documentation and intensive education in the "least restrictive environment" possible. All of this would be wonderful, if we even agreed about what "inclusion" means, let alone how to determine the "least restrictive environment." It's the classic civil-rights battle, with changes becoming mandatory long before we've reached consensus.
Still, the march has begun. And Missouri's lagging behind like a kid who missed his nap. Almost two-thirds of our state's autistic children remain in self-contained classrooms or schools. In St. Louis County, only 55 of the 296 autistic children are fully included, with another 29 shuttling back and forth between regular and special ed. The remaining 207? Still segregated, usually by administrative fiat and not parental choice.
We think people with autism dread change?
Darkly handsome, compulsively orderly (his videos lined up like an engineer's dominos) and easily overexcited, 10-year-old Clayton Meinks goes to Twin Chimneys School in the Fort Zumwalt district, in St. Charles County. With the help of an aide, Peggy Baker, and some tutoring, he spends the entire day included. Today, he's seated next to Sean, who's avidly watching the sign language Baker is using to refocus him. Soon Sean's hand is moving, too. "Try the 'M,'" he advises Clayton. Then the class moves to the computer room, Clayton waiting patiently for the last available computer and reading off every name in the keyboarding assignment, lickety-split.
The general-ed teacher, Gail Young, swings class discussions Clayton's way whenever she can, and at 7:30 every Thursday morning, his mom meets with Young and other educators to plan curriculum modifications. If Clayton starts reciting the Toy Story script or the Twin Chimneys Respect Pledge in the middle of class, Baker murmurs a reminder: "Keep the words in your head." If he gets wound up, they go for a quick walk or take refuge in the occupational-therapy room. "Sometimes he likes to lie down on the mat with beanbags on top of him, like a great big hug," she explains. "But he hasn't needed that in a long time."
Clayton's class did a silent fire drill before the real one, in case the blare made him forget what to do. They made him a booklet with their pictures and little messages, to help him learn their names. Last month, he was invited to a birthday party; a few weeks ago, another little boy asked whether he could sleep over. And all the boys have realized that "if you tell him something, like, that's bad, he'll keep on repeating it" -- so they avoid cuss words.
Why does Clayton have problems with certain things -- have they thought about it? "I have no clue," says Ryan, wide-eyed. Then he remembers something. "We had this lady come in, she was telling us stuff." Damon finishes the tale. "They sprayed bottles all over us so you couldn't hear the story. They said that's how Clayton feels."
Turns out last fall, an autism expert had told the kids a story, cheerfully warning them they'd be tested. As she talked, other adults had nonchalantly flicked the lights, sprayed a noxious mist, banged pots and dropped books. When the storyteller asked the kids a question, nobody could answer. Then she explained how autism can lead to sensory overload, distraction and internal chaos.
Now they ask Clayton questions (a little girl in a yellow turtleneck is an especially determined tutor, repeating, "Clayton, do you have a brother?" until she gets an answer) and draw him pictures. It's a big difference from the Parkway School District, where Clayton sat in the back of the class with an aide. Period. "I don't think the teacher ever talked to him," says his mom, Susan Meinks. "She made a couple comments like, 'I can hardly handle the regular kids in my classroom, let alone the kids with special needs.' Then she retired."
In retrospect, Susan wishes she hadn't tolerated years of silence, reluctance, mismatch. She especially wishes she hadn't let her son be "dragged kicking and screaming every morning" onto a school bus he feared, just because SSD had told her he needed to learn the routine. "I guess I just trusted the system," she says helplessly. "I thought there was more expertise than there was. Later I heard teachers say, 'Well, we just spent a paragraph on autism.'" She also found out Missouri doesn't have an autism-certification program for special-ed teachers, so those who teach autistic kids do so from a background of speech/language, mental retardation or behavior disorders.
One year -- kindergarten in a speech/language classroom -- did go well. Then they doubled its size, moved it to a new building and took away an aide. Clayton started having problems, so he was put back in an all-autistic classroom. "He started running again, throwing stuff at home, pulling hair," recalls Susan. "It was not a good year. When I started talking about inclusion, they must have thought, 'Are you nuts?'" SSD agreed to try it in small increments. "Then he had seven different aides in eight weeks, many of whom were not adequately trained. When I asked how they were trained, they said they weren't required to tell me. But it was obvious they didn't know what to do with him." She brightens. "That's why it's so heartwarming now, to see him learn."
Both the Fort Zumwalt and Francis Howell school districts get rave reviews from parents of kids with disabilities. "We have more than 3,000 special-ed students in Francis Howell," reports parent Karen Bradbury, who just licked envelopes for a mass mailing. "It scared me at first, I thought, 'Gee, is there something in St. Charles?' But a lot of people move here to get their children into the district."
In the first home video, the fat-cheeked blond baby is clutching the crib rail, dancing up and down, singing "Day-Oh" with the fervor of a Christian rocker. In the next, he's a year older, struggling to spit even one word from his disconnected consciousness.
Rebecca Droste doesn't like to show those later videotapes. She remembers that dark corridor of time all too well, the downward slide from "Gee, he hasn't said 'Mama' for a while" to appointments with pediatric experts reluctant to pronounce this particular diagnosis. Daniel is 6 now; just last June, he couldn't answer if someone asked his name.
"My name is Daniel Droste," he chatters to the reporter, borrowing her pen to write his name and draw the Disney castle in her notebook. "I'm 6 years old, I go to Reed School, my mother's name is Rebecca Droste, my father's name is Neal Droste, my cat's name is Boots, my favorite color is blue." After a flurry of kisses and "You're so good!" his mom points to a fat binder of drills and progress reports and says simply, "ABA."
It's applied behavior analysis, the hottest methodology yet for early intervention in autism. Systematic and tightly structured, it moves kids from saying a word on a flashcard to recognizing what that word represents to demonstrating it themselves, generalizing the learning. The Drostes hire 10 different ABA therapists to give Daniel 40 hours of drilling, review, hugs and compliments every week. "People will think we are cruel to put our kids in 40 hours of intensive therapy," adds Rebecca, "but those 40 hours go by anyway. Would you rather he spend them spinning and flapping?"
For a while, it looked as if SSD would. They refused to reimburse the Drostes for any of Daniel's ABA therapy last June. Like other experts, they were skeptical of its early history (founder Ivar Lavaas used to use punishment as well as reward), its consuming demands, its expense. But Rebecca, who serves on the board of Missouri Families for Effective Autism Treatment (MO-FEAT), joined with other parents to demonstrate the difference ABA was making in their children. (After nine months of ABA, Daniel's IQ shot from 64 to 98, taking him right out of the mentally retarded range -- and instead of wriggling, ignoring or babbling, he was testable for every question.)
Meanwhile, SSD was settling a lawsuit on behalf of a child who had "languished" in an all-autistic classroom without learning anything. Pressured, they agreed last fall that, at least up to the age of 8, they would offer ABA. "It seemed much more in the interest of the district to fund the program than put the money into legal fees," Wollberg comments dryly. "It was a promising practice. It's risky; we're not even being reimbursed for the school-age children. But we're asking the state to consider it." They now reimburse the Drostes for 25 of Daniel's 40 hours, and his school aide is trained in ABA.
ABA's not a miracle cure. But for Daniel and many others, it is a miracle. "ABA reached him," says Rebecca. "You almost have to pull these kids out of themselves, using whatever motivates them. Verbally saying, 'I'll give you a Popsicle if you clean your room' -- he doesn't have the language or the cause-and-effect understanding for that. These children need to be taught the way they can learn." Staring at a paper-plate Easter bunny with cotton-ball cheeks and pipe-cleaner ears, she says softly, "Do you know what it felt like to be afraid your child couldn't answer if he was lost in a crowd? He never even felt the need to communicate with us before."
Speech therapy at a private preschool hadn't helped. And when Rebecca brought her autistic son to the Ladue School District's Early Childhood Center, she was immediately led to the special-ed classroom. "They said, 'This is where Daniel will be,' and they were so proud of it," she recalls. "It was orderly; it looked quite nice. I said, 'My goal is to get him included, can my son maybe go for circle time with the regular class?' And she looked at me and said, 'We don't do that.'
"They hadn't even tested him," Droste exclaims. "They hadn't laid eyes on him." She went home, took out the Yellow Pages and dialed every private or parochial preschool she could find. "I called maybe 15. They all said, 'We don't have the resources,' or, 'We'll call you back' -- but nobody ever did."
Finally Childgarden, a preschool with inclusive classes, agreed to try, and their tiny, tasseled graduation cap now hangs proudly in Daniel's home. He's currently included at Reed Elementary in the Ladue School District, where "his teacher squats down in front of him, waits for his answer, expects an answer and hugs him," glows Rebecca. "He's learned to serve and bump a volleyball!" One day, tiny Andrew came up to her and solemnly announced, "I have to go tell Daniel what is going to happen next." He went over and whispered to her son, and Rebecca froze in amazement: Daniel was giggling.
Carlton and Cheryl Steed moved to St. Louis four years ago with their blended family: Jontaar Mitchiner, 10, who's severely autistic; Caressa Steed, 10, who has attention-deficit hyperactivity disorder (ADHD); and Isaac Steed, 9, who has autistic tendencies. The Steeds have their work cut out for them, but at least back in North Carolina, the kids' educations and services unfolded smoothly. "If it weren't for Judevine, we'd be back there by now," admits Carlton. "The state of Missouri is so far behind, it's pathetic."
All three of the Steeds' children were placed in self-contained city classrooms; all three have been transferred or moved multiple times. The city only has 30 officially diagnosed school-age autistic students in its regular schools, with seven more contracted to Childhaven for special education, so finding the right placement and a qualified teacher can feel like bobbing for apples in a pickle vat. Often it seemed the teachers hadn't even read the children's files: Caressa was doing preschool work until finally, bored to tears, she scrawled on her name tag, "Piss me off." The teacher was ecstatic: "I didn't know she could write!" At the next school, Cheryl says nobody bothered to check the records and see that her daughter had ADHD. Now, after two-and-a half years of misunderstandings, they're trying to find her a psychiatrist.
Then there's Jontaar. In North Carolina, his teacher seemed well versed in autism. At Gallaudet School (a special-ed school within the St. Louis Public Schools), he wound up in a behavior-disorder classroom, and Cheryl says "the past two or three times his teachers weren't even able to sign his IEP (individual educational plan) because they weren't certified (for special education)." Last year, his teacher informed Cheryl that she had to miss work and accompany her son on the field trip or else he'd have to stay home, because he was "a problem." The principal apologized, and later the obviously overwhelmed teacher's class was disbanded. "Jontaar was changed five or six times that year. And change of routine for him will disrupt everything."
"But now he has Mr. Jones," inserts Carlton, sighing with relief. "Mr. Jones is beautiful." The new tension's coming from Jontaar's aide, who probably makes $13,000 a year or so and is going through a rough spell. "He's come to our house at all hours asking for money, and he's missed a lot of days," says Cheryl. "But he's wonderful with Jontaar, so we're afraid to say anything that would jeopardize that." The Steeds have been especially nervous since Jontaar was suspended earlier this year. "He can't communicate real good," his father explains earnestly. "His aide wasn't with him, and he was trying to let someone in the lunchroom know he wanted something else to eat. He grabbed another child's food, and the child grabbed back, and" -- Dad winces -- "Jontaar bit him."
That's exactly the kind of behavior that scares other parents into opposing inclusion. But it's not random, and it's not inevitable. Suzanne Falvey, an assessment specialist at the Judevine Center for Autism, recalls "a child who was biting other students in the face a year-and-a-half ago. He now spends 75 percent of his time (peacefully!) in a regular third-grade classroom. It took immersing him in a community that did not consist only of children with autism; it took teachers who could collaborate and who believed he was capable; it took a communication system so when he was frustrated or agitated he didn't have to bite. And it took some flexibility on his part. But once he was with other kids and saw those models, he had the motivation to stay there."
Progress like that takes intense cooperation among family, administrators, teachers, therapists. But the Steeds aren't even sure who's on their side. Carlton has started his own janitorial company, and the family's gut-rehabbing an old three-story house ("the one with the bay window"). Jontaar falls on his knees in the plaster dust and rubs it with his hands, and he hates changing into clean, unfamiliar clothes. But Cheryl (who has a chalk-dusty smear at the hem of her own clean, silky pants) says his school didn't even try to understand; they automatically treated the dirt as a sign of neglect. Then she was automatically hotlined when the kids missed school for a series of neurological exams she'd already reported to the principal.
Therapists from Judevine say that in their experience, the city system seems ignorant about autism and unwilling to follow through with parents. "There is a definite shortage of special-ed teachers, particularly for (disabilities like autism)," admits Louise Wilkerson, executive director of special education for the St. Louis Public Schools, "School districts that have the less attractive compensation/benefits packages are experiencing more than their share of difficulties." Almost any county district can top the city's package -- and then there's SSD, a separate entity with the entire county as its tax base.
The city also spins in a vicious circle: Parents with enough savvy and resources usually pull their autistic kids out of the city system. And the handful who remain don't weigh enough to bend the system their way. The city's regular-ed teachers are harried and overworked, without enough energy, time or expertise to monitor for the variables that might back an autistic child into a corner. Full inclusion's not even a goal; most kids in the city are mainstreamed for, say, P.E. and music, but it's rare for anyone with autism to spend more than half the school day in a regular classroom. Progress is defined as a speech therapist providing services in the classroom instead of pulling the child out. Something like ABA is seldom even requested; many city parents lack the money, time and ability to research new methodologies and threaten lawsuits -- let alone do intensive tutoring themselves or convey their kids to "therapeutic horsemanship."
Even in the county, inclusion usually hinges not on the child's readiness but on the parents' income. "If you look at the inclusion numbers in St. Louis County, they are geographic," notes Wollberg. "We have much more inclusion in higher socioeconomic groups. That has to change. And it's hard to change, because it's easy to hide: The parent didn't request it, so nobody's complaining."
"For me, inclusion's a form of justice," says Suzanne Falvey. "It can take a lot of different forms, including vocational training, if that's what that person needs. But the fact that we have to debate where a person belongs is ludicrous! My coworkers don't say, 'Are we going to include Suzanne today?'"
Studies show included children making more friends, communicating more and progressing faster. Yet special-ed teachers tell inclusion horror stories: the little girl who got a spelling word right if she grunted. The kid whose aggressive outbursts threw his classmates into a tizzy but had to be endured because they were "symptoms." The mom-in-denial who hired a fleet of aides to take her child to every possible mainstream activity -- then finally had to fill in for a sick aide, saw her child's struggles firsthand and crumpled.
Done the right way at the right time, inclusion is far better preparation for adult life than a self-contained classroom. Done wrong, it's a way to cut special-ed costs and throw kids into classrooms that can't handle them. In the world of autism, "tantruming" is a verb for good reason. So you have to give included kids ways to communicate their frustrations peacefully. You also have to stay vigilant: In middle school, the academic gap sometimes widens to the point that modifying lessons is pointless (what, you dissect only the frog's leg?), and the social pretensions, games and obsessions can be bewildering.
Inclusion requires constant close teamwork, creative teaching and involved parents. Turf battles and budget wars don't help. Neither do resistant, wary principals or systems whose very structure leans toward safe segregation. In the new thinking, special ed should be a collection of services, not quarantined buildings, and inclusion should happen whenever possible. But where's the incentive to make that huge change? Missouri's Department of Elementary and Secondary Education still reimburses school districts at a higher rate if students are in special-ed classrooms for 60 percent or more of their day. And county principals still treat special ed as SSD's problem, not theirs.
"Inclusion as practiced in St. Louis city and county does not qualify to use the term," a mom wrote to the Chalktalk discussion group on Postnet, responding to principals and teachers who'd questioned the wisdom of inclusion. "The process is stunted and subverted by people who make their money off segregating students with special needs away from the regular-ed population.... Parents are told that the regular-ed school does not want their child, and the regular ed school is not given the supports it needs to help all kids learn together. Segregation blossoms, fear of the different grows, and the general attitude is that inclusion doesn't work."
Dr. Joshua D. Feder, a diplomate of the American Board of Psychiatry and Neurology, treats autistic children in San Diego. He also has an autistic son, so he doesn't need much persuading to consult with the local school district. "Autism tends to burn out a school system," he observes. "When the first parents come to them, they say, 'My goodness, my heart goes out to you, your child has this quirkiness. Let's see what we can do.' And they find a sweet teacher, and the kid does OK. Then they find more kids in the district, who knew? Then people collect in the area, because the school system's experienced. Then parents are hearing about new therapies and the administrators start to worry about cost and they get defensive and the lawsuits start."
(According to Melodie Friedebach, coordinator for the Division of Special Education here in Missouri, the number of due-process complaints has risen from five or six a year to 27 at last count, and schools are now taking out lawsuit insurance instead of caving in, old-style, to vehement parents.)
"I'm working with a district now," Feder continues, "trying to prevent their burnout. It's an experiment. I'm going to try to make the whole process as explicit as possible to them. How do you stay in a cooperative, collaborative relationship when you know the cupboard's going to be bare at some point?" He draws a deep breath. "These kids are tough, it's hard to make them better. The teachers and parents get rigid just like the kids, and everybody gets all balled up."
Except, of course, the other kids, who've been known to crawl under the table and kindly ask a huddled autistic child, 'What's the matter? Come out, I'll sit here right beside you.'" Parents worry that their child won't get a good education if the teacher's busy addressing special needs. But children in inclusive classrooms are getting an education the rest of us never had.
And they're "doing inclusion" far better than the grownups.
Subscribe now to get the latest news delivered right to your inbox.