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June 21, 2018

9/20/2016 7:28:00 AM
Teaching in the Time of Autism: Mainstreaming the autistic child, many question whether it works
Hundreds of special schools give parents another choice

Richard Moore
Investigative Reporter

The latest in an occasional series

For decades now, mainstreaming special-needs students - that is, educating them as much as possible in general education classrooms rather than in separate special education settings - has been a mainstay of American education policy, and, for the most part, that policy has been an outstanding success.

Integrating special-needs students in settings with typically developing peers has enabled hundreds of thousands of students to not only attain a decent education but to function in the outside world.

Now, however, as an epidemic of autism sweeps the nation and indeed the world, the philosophical foundations of mainstreaming, or inclusion, are being tested. The fact is, children with ASD learn differently than other children do, and they learn differently than other special-needs populations do, and, many parents and researchers say, that presents unique challenges to learning that general education classrooms are not overcoming.

Autistic children are more likely to become disruptive, for instance. They often refuse to engage in pre-planned class activities and tasks. They may not respond or even process verbal instructions, or understand praise or criticism. They sometimes cannot interact with other students on even the most basic social levels.

They may require special spaces and classroom configurations, including visual cues and minimal, bare landscapes that avoid overstimulation but that can present as dreary to typically developing students.

The intense amount of attention - not to mention the need to change curricula or activities on the fly - can slow classroom progress below established standards, further disrupting educational progress for typically developing students, while failing to serve the needs of those with ASD.

Still, on the other side are parents who swear by their autistic child's mainstreaming successes, not to mention educators who warn against the long-term social effects of segregating any special-needs population.

These educators stress not only the autistic child's right to be included, no matter how differently he or she learns, but say the values taught in an inclusive classroom are of such vital importance that they outweigh any negative educational or functional impacts on those populations.

"In our increasingly diverse world, all people need to be comfortable with diversity," Mara Sapon-Shevin, a professor of inclusive education at Syracuse University, wrote in 2008. "Inclusion benefits all students by helping them understand and appreciate that the world is big, that people are different, and that we can work together to find solutions that work for everyone."

Sapon-Shevin believes the beginning assumption in education should be that all children must be included and that we must meet their needs within an inclusive setting.

These days those such as Sapon-Shevin are swimming against a strong countercurrent. Composed mostly of parents but also including many teachers on the front lines, these advocates for ASD education say mainstreaming children with ASD not only does not help many of those children but reinforces the core deficits and social inhibitions with which they must deal.

Indeed, they argue, the overwhelming presence of people, things, and information they cannot process can actually intensify the child's isolation and segregation from the outside world.

The problem with full inclusion, these critics say, is that it is an ideologically based approach - the assumption is that inclusion is the right thing to do, and, if it fails, the task is to make it work rather than question whether it can work - rather than evidence- and outcome-based.

At first clustered in a few pockets around the country, this point of view has grown in recent years across the national landscape and spawned hundreds of special schools that offer autistic-specific programming, including the enormously successful Lionsgate Academy in Minnesota and the equally successful Millwood Learning Center, now called Devereaux Cares, in New York.

As the schools proliferate, the evidence of their long-term success - measured by both empowering autistic individuals to live and work independently after high school and by successfully integrating autistic young adults in surrounding communities and workplaces - is mounting.

Virtually none of the schools have failed; nearly all have waiting lists.

An option, not a mandate

An important aspect of the movement for specialized and even separate education settings for some children with ASD is that it does not reject inclusion. Rather, it calls for giving parents an alternative to the general education classroom when the inclusion option is not succeeding.

That alternative gives parents not just one but a multitude of options. For some children, their secondary school years will indeed be enclosed within the special-needs environment. Others may need only a year or two in the special setting to return to the general education classroom. For many others still, education can be a hybrid affair, partly within the charter school and partly within the general education classroom.

Diane Halpin, the executive director of Lionsgate, a public charter school in Minnetonka, Minn., specializing in educating students with autism spectrum disorders, says Lionsgate and schools like it are not a move away from inclusion; rather, they represent another needed option and choice for families.

"You have folks who will say, 'Hey, this is not an inclusionary model, and in special education we want our kids to be included,'" Halpin said. "That's supposed to be a really big thing. What we come back and say is, 'This is a choice. This is a choice that you can have among many. If you have a child on the autism spectrum who is receiving appropriate services, who is taught by teachers who understand them, who have friends, by gosh, that's great. That's where you want to stay and that's where you want to be.'"

On the other hand, Halpin said, if any of those elements are missing, it's nice to have a choice.

"That's all that Lionsgate really represents, a personal choice by parents to have their children in a building where you've got other kids with disabilities on their own journeys," she said. "You have to have an open mind about that whole inclusionary process."

You also have to know what inclusion is. While these days the terms 'mainstreaming' and 'inclusion' are used interchangeably by many, they are not the same thing. 'Inclusion' focuses on the civil rights of the students, meaning that all children, regardless of disability, have a right to an education within the mainstream of public education.

Undergirding this notion is a fundamental belief that the segregation of special-needs children from the typically developing student population is never in the best interest of those children, stigmatizing them as "outside the normal world" and leading to discrimination because they are viewed as not quite first-class citizens.

Those who advocate "full inclusion" go a step further, arguing that children should always be integrated into regular education classrooms, period. In all inclusion, services are expected to come to the child in the general education classroom, rather then the child generally learning the same material as the rest of the class, and the emphasis is on long-term social integration into society rather than age-appropriate academic performance.

Mainstreaming buys into the philosophy-driven inclusion mandate, but concedes some territory, if grudgingly, to evidence-based outcomes. That is to say, they believe children have a right to inclusion, but only when the child is able to demonstrate that he or she could successfully participate in the regular education class, albeit with some modifications.

Others less enamored with mainstreaming call it an older effort that paid lip service to inclusion while simply dumping special-needs students into regular classrooms with no support services, setting them up for failure.

Here's how Sapon-Shevin put it in 2007: "Mainstreaming was an attempt - ill-founded and unsuccessful - to place students with disabilities in typical classrooms, hoping that they might succeed. Mainstreaming basically says, 'We won't change the regular classroom, the curriculum, the teaching, or pay much attention to the social environment, but if you can succeed here, you are allowed to stay.' Not surprisingly, students with disabilities, many of whom had a history of school failure already, didn't do well, and then, their lack of success was seen as evidence of their inability to be with typical students."

Not so inclusion, she said.

"Inclusion says, 'You have a right to be here. This is your classroom and your school as much as it is any other student's.'"

The benefits of inclusion

They may have the right to be there, but increasingly parents of autistic children say they should have a right not to be there, too, especially when resources could be channeled to more effective settings and programs.

Still, while more parents oppose forced inclusion and clamor for options, that's not to say that mainstreaming autistic students never works. When schools have the proper resources, inclusion can work quite well, and it has for many.

The most highly touted benefit of inclusion is that typically developing students can serve as role models for their autistic peers, not merely teaching them how to interact but demonstrating what is acceptable behavior and what is not.

After all, difficulty in social interactions is one of the benchmark traits of autism, so what better place than the regular classroom to learn how to socialize, with its many opportunities for interaction with peers? Simultaneously, researchers say, typically developing students learn to be tolerant and accepting of those who are different from them.

In 1981, for example, A. L. Egel, in "Normal peer models and autistic children's learning," reported dramatic increases in performing difficult tasks among mainstreamed autistic children when they observed typically developing children performing the tasks correctly: "In each case, the peer modeling procedure produced rapid achievement of the acquisition, which was maintained after the peer models were removed," the study stated.

In a 1987 study, "Peer Interactions in Mainstreamed and Specialized Classrooms: A Comparative Analysis," researchers Michael Guralnick and Joseph Groom compared peer interactions and cognitive levels of play of mildly developmentally delayed preschool children, in both mainstream and specialized settings, and found positive social outcomes in mainstreamed settings.

"When in mainstreamed playgroups, delayed children engaged in a substantially higher rate of peer-related social behaviors and played more constructively," the authors wrote. "In relation to previous findings, these results suggested that the proportion of non-handicapped children in mainstreamed settings and the availability of children similar in chronological age to the delayed children are important programmatic factors in early childhood mainstreaming efficacy research."

Still another study in 2001 showed increasing evidence that "peer-mediated interventions for students with autism were effective in increasing participation in natural settings," and another study indicated that, when students with ASD were placed in restrictive settings, they tended to interact with instructors rather than develop peer relationships.

And finally, in 2009, Eitan Eldar, Rachel Talmor, and Tali Wolf-Zukerman produced a study of inclusion in Israel examining both its difficulties and successes, and, typical of the literature, offering prescriptions of how to make inclusion work.

"Studies conducted both in Israel and elsewhere have found that children with autism display more social behaviour when among typical children than among other children with autism," Eldar and his colleagues wrote.

But critics have pointed to any number of problems with the research. First, much of the cited research touting the actual benefits of inclusion for children with ASD is older - from the 1980s and 1990s - when the epidemic was only beginning to mushroom.

The study that found that ASD children tended to interact with instructors rather than develop peer relationships in restrictive settings dates from 1984, for example. Would the results, which were small in sample scope anyway, retain any validity in a vastly larger and more diverse autistic population?

Others, such as the much cited 1988 Guralnick study, did not focus exclusively on children with ASD. Then, too, many of the studies tended to assume what they were trying to prove, citing the benefits of inclusion while also acknowledging serious defects but then proceeding from an assumption that inclusion was the proper approach.

Accordingly, the studies tend to work backward from recognized deficiencies to the assumptive conclusion, with recommendations about how to make it work, rather than questioning whether it can work in the first place. Again, it points to the ideological basis of the idea.

Here's how Adelle Renzaglia of the University of Illinois put it in 2003, in "Promoting a Lifetime of Inclusion, Focus on Autism and Other Developmental Disabilities": "Because inclusion is a philosophy and not a place, curriculum, or activity, inclusive schools, neighborhoods, and community settings must be created to accommodate the range of potential participants. When people develop environments with the belief that everyone belongs and everyone can contribute, individual productivity will be maximized."

In other words, inclusion will work and it must work.

Another viewpoint

Unquestionably, inclusion does work for many. The problem is, according to thousands of teachers and many more parents, it does not work for all, and perhaps not even for most, autistic children, and increasingly the science is backing them up.

Some research points to the specific difficulties children with ASD face in the educational mainstream.

In a 2015 research paper in the Indian Journal of Applied Research, Sheila Christopher of Holy Cross College and Cresenta Shakila, an assistant professor at SASTRA University, pointed to one of the biggest weaknesses in the autistic child's education: the lack of social skills instruction. They cited extensive research that physical proximity to typical peers alone does not necessarily lead to improved social interactions for those with autism - a successful mainstay of mainstreaming - and, more critically when it comes to inclusion, neither do interventions that exclusively target improvement in pre-academic skills.

"Often, children with autism must be taught how to hold a conversation, take the perspective of others, and engage in pretend play," the authors wrote. "In addition, many must learn the subtleties of social interactions, such as personal space, showing empathy, and reading body language."

But those skills are often elusive and may not end up on a student's Individual Education Plan, they wrote.

"Oftentimes teachers focus more on decreasing behaviors rather than selecting behaviors for acceleration," they wrote. "However, teaching these skills to children with autism is as important as teaching pre-academic skills and should begin in the preschool years."

Parents, educators, and therapists are challenged to teach children with ASD the 'unspoken' rules of social behavior, the authors wrote.

"Typically developing children pick up these skills through experience and learn from interactions with others," they wrote. "Children with autism sometimes lack the ability to learn from their life experiences, or pick up social skills and cues from peers, siblings and adults, and thus have more difficulty with social skills. In order for these children to learn the critical life skills essential to living with others, they have to be taught."

Many times, many parents say, the only place to teach such skills is in a special setting that focuses on social skills interventions and teaching.

Some researchers also believe general education classrooms - with free-flowing discussions, bright lights and colors, and even the presence of too many educational cues (stacks of books, charts, chalkboard messages, and models) - may overload and confuse children with ASD, further leading to their isolation, while extensive worry regarding social encounters compounds those core deficits even more, further inhibiting meaningful social relationships and leading to a felt sense of isolation, as researcher Lisa Moore put it.

In a 2001 study,"Social Involvement of Children with Autism Spectrum Disorders in Elementary School Classrooms," Elinor Ochs found that withdrawal often was an attempt by the child with autism to restore equilibrium in an overstimulated environment.

"When the child in our study became extremely overloaded, however, they typically would display their intense internal discomfort by shutting their eyes, holding their hands over their ears, falling asleep at their desk, or exiting from the immediate social setting to a quiet area."

In a 2007 study, Brandt Chamberlain found that, while including children with autism in regular classrooms has become prevalent, some evidence suggests such placements could increase the risk of isolation and rejection.

"In this study, we used social network methods to explore the involvement of children with autism in typical classrooms," the study stated. "Children reported on friendship qualities, peer acceptance, loneliness, and classroom social networks. Despite involvement in networks, children with autism experienced lower centrality, acceptance, companionship, and reciprocity."

In a 2012 study, "Is Inclusivity an Indicator of Quality of Care for Children With Autism in Special Education?" Michael Foster of the University of Alabama at Birmingham, Birmingham, and Erin Pearson of Johns Hopkins University said the answer was no. Setting out to determine whether the proportion of time spent in an inclusive educational setting improved key outcomes, the researchers found that, compared with children with autism who were not educated in an inclusive setting, children with autism who spent 75 percent to 100 percent of their time in a general education classroom were no more likely to attend college, not drop out of high school, or have an improved functional cognitive score.

"We find no systematic indication that the level of inclusivity improves key future outcomes," the researchers concluded.

Then, too, as researcher Lindsay Vander Weile observed, it is impractical and unrealistic to implement approaches such as the Lovaas Model of Applied Behavior Analysis in a fully inclusive classroom, and yet that model has provided some of the more promising evidence-based outcomes.

"Often, the individual attention and the smaller number of classmates characteristic of a special education program creates a very effective learning environment for children with special needs," Vander Weile wrote. "Some students with moderate to severe intellectual disabilities may not cope as well in inclusive classrooms and actually prefer being part of self-contained special education programs. Depending on the instructor, the type of teaching style, and the available supports, students with disabilities occasionally struggle academically in the general education classroom, and frustration is both natural and inevitable if exceptional students are unable to complete the same work as their fellow classmates. When working one-on-one with a special education teacher or with a disabilities specialist, however, children receive an increased amount of individual attention, resulting in a greater potential for academic growth."

The bottom line is, virtually all the studies, as varied as they are, point in a single direction: Inclusion works for some students with ASD, and it does not work for others.

Here's how Dr. Erin Rotheram Fuller put it: "The efficacy of inclusion alone on the social development of children with ASD is not entirely clear. Some parents report their child's inclusive experience as characterized by peer acceptance, and even being able to form meaningful friendships with their non-disabled classmates. However, other studies have shown inclusion to be insufficient to truly integrate children with ASD into the social networks of their typical peers, and may even be to their social detriment. For older children and adolescents, especially, inclusion alone does not predict the presence of a reciprocal social relationship."

What works for some does not for others, and, across the country, states and communities and parents are responding by providing a variety of options, including "inclusion" where it is appropriate and where it works, and other options where it doesn't, especially specialized education schools and settings.

Here's how one program for autism, TEACCH, put it in North Carolina: "Among the options developed, one can find highly structured, intensive specialized classrooms for autistic students, cross-categorical classrooms that serve one or more students with autism, and regular education classrooms that serve one or more children with autism. Oftentimes, placement for children with autism involves a combination of educational settings. Individualization, when properly carried out, leads to optimal, unique solutions for each student, based on his/her needs rather than ideology. The heterogeneity one sees in autism requires many options and possibilities, not one solution for all."

Yes, the heterogeneity one sees in autism requires individuals with ASD and their families to have many options, or, as LUHS district administrator Jim Bouché likes to say, "a chance for a choice."

Richard Moore is the author of The New Bossism of the American Left and can be reached at www.rmmoore1.com.

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