Why Inclusion Does Not Always—Often—Work

George and Sam: Two Boys, One Family, and Autism
Inclusion, while not exactly a fighting word like “cure” or prenatal genetic testing in autism circles, can certainly arouse strong emotions and opinions in parents. When Charlie was just starting out in his ABA program over seven years ago, “full inclusion” was a goal. When he was seven, he attended some “specials”—-music and library—with his same-age peers and an aide, and many “disruptive” behavior problems. In retrospect, I think that better training of the aide and better planning with supports built in like a token system might have made these experiences more successful. At this time, Charlie is in a self-contained autism classroom (in a public school in our town) and has never done better at school, and, at least for this time, mainstreaming does not seem like the educational option that will best help him learn.

This is not, of course, the case for many autistic children: If there is one way in which an autistic child’s education needs to be “individualized,” it is on this issue, among a host of others. Charlotte Moore, mother of George and Sam and author of George and Sam: Two Boys, One Family, and Autism writes that

Arguably, the whole concept of school is wrong for children on the spectrum. Any school, even the most specialized, involves some degree of social cooperation and space sharing. One of the motivations behind home education programs, such as ABA, is the impossibility of finding any school environment in which an autistic child can thrive. (p. 214)

Moore is not at all arguing that inclusion is “always wrong”; she notes, very realistically, that “the cases where it works well are heavily outnumbered by the cases where it fails” (p. 209). Her position is based on her understanding of autism:

One argument often put forward to support the inclusion policy is that ASD children will benefit from the example of mainstream behavior. Well, if these children could learn by example, they wouldn’t be autistic. When autistic children imitate others, they do so only in the most superficial and transient ways. They don’t relate behavior to the underlying social structure. George’s time in mainstream was far more successful than Sam’s, but he still never learned in any meaningful way from the play of the other children. This isn’t surprising—if you think about it, most autistic children have had a “mainstream” home life, and they haven’t learned from that. (p. 208)

(I can’t exactly say that Charlie has had a “‘mainstream’ home life at this point—ABA, VB, and who knows what other educational methodologies have gotten wound into our home life for the past years.)

For Charlie, what is most challenging for him to learn in a mainstream setting are academic subjects, like reading and writing; sensory over- and under-stimulation set in, as do his auditory and visual processing problems. Add the social aspects of school—like staying in his seat, raising one’s hand to ask a question, lining up (to name so quite basic ones)—and mainstream school, for Charlie, becomes a manifold bundle of challenges. Charlie was doing some peer modeling with other students in his speech therapy to practice “who” and “what” questions; this has had to be discontinued to address his articulation issues. Even though he is no longer doing any formal educational activities with the other children in his school, he is not at all hidden from them: He walks the halls, uses the gym and playground, is a part of the school community (though more can always be done in this area).

I suppose inclusion is not exactly on everyone’s mind right now with the holidays—though it is precisely the disruptions to the usual orderly routine at school that come with the holidays that are having some not-sp-happy effects on Charlie: The hyperness among all the children in the building, in the anticipation of vacation and celebrations and parties, and all the singing and pine trees and cookies and treats and…… I leave you with twostatement from Moore about why an overall “policy of inclusion” is simply “wrong”:

Such a policy is “wrong as in misguided, and in some cases wrong as in immoral.” (p. 198)

The current inclusion policy [in England] dooms many children to failure, and in the long run, failure is expensive. (p. 216)

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    • http://compostermom.blogspot.com Daisy

      LRE — Least Restrictive Environment — is much better than a blanket policy of inclusion-no-matter-what. This allows the IEP team to choose the best placement for the best results.

    • http://www.autismvox.com Kristina Chew, PhD

      I need to find out more about the system in the UK to get a better sense of Moore’s position; what is interesting is that, while George has many more skills (academically, verbally) than Sam, she concludes that both do better in school settings specifically suited for their being autistic.

    • http://www.thismom.com kyra

      this is why i choose to homeschool fluffy. until his social development reaches the age where peer interaction is appropriate, the school setting, inclusion or otherwise, make no sense. for him. there can be no thriving. only coping at best. i don’t want that for him.

    • http://www.autismvox.com Kristina Chew, PhD

      Moore quotes an autistic student (now in his teens or college-age) who notes that homeschooling is indeed always an option.

    • http://www.mysamiam.blogspot.com Laura Cottington

      First of all, forgive the teacher in me, even though I am the mother of an autistic child as well.

      While we are blessed to be in a district right now (and that can always change with a move or funding), that is highly educated in working with autistic children, I am excited as we prepared at an IEP meeting with talks of mainstreaming Sam with a full time para in kindergarten next year.

      The teacher in me will go back to IDEA and Public Law 94-142 and the grim pictures of children institutionalized. To think that maybe some of our kids would never even be afforded the opportunity to a public education as they may have been misdiagnosed as schizophrenic or mentally retarded in the day. I am so grateful that I get a say and a choice in Sam’s education (while this isn’t even still true in some states).

      As a regular education teacher, I always created my own versions of IEP’s for all kids. All kids have individualized learning styles and needs. With the right teacher, any accomidation can be made. But I too know teachers who don’t want to take the time to meet every child where they are at. It can be a vicous circle.

      Individual needs for Sam, are that he does profit by being in a semi-mainstream class right now. When he is just with autistic kids, his repetitive behavior increases, as he imitates everyone elses sounds, flapping more, less opportunity for social cues from peers and he relys more on teacher support for all interaction. Last year he did not speak in his classroom all year and had to have cues for everything. This year, in a class with 10 regular ed and 5 sped, he is being verbal several times a week.

      I agree with Kristina, when she talks about collaboration and working with our schools, and also the gut feeling of the parent, as in Kristina knowing what is truly best for Charlie, but I could never right off mainstreaming for all autistic children. Sam would never be where he is today without it.

    • http://www.rettdevil.com Kassiane

      Something they forget is that the LRE (which is also the name of the kinda geeky support forum on rettdevil.com *grin*) isn’t always what the charts say. I went to a “Special Day School” for gifted kids. Less restrictive than regular school. A special day school for spectrum gifted kids, even LESS so! Or the ASPIE school that now exists.

      And of course the Deaf community has their boarding schools that they consider LRE…to each their own, and restriction is based on the person, not the flowchart…

    • http://www.autismvox.com Kristina Chew, PhD

      Inclusion and inclusive; specialized, individualized, special: All of these terms come into play when it comes to edcuating our kids and what works differs so much, from district to district, child to child, year to year. The one thing I try especially hard to do is to be very open to seeing what Charlie needs and where he is at—-to think of how best to help him learn best.

    • http://lisa-jedi.blogspot.com/ Lisa/Jedi

      Brendan is in a private, alternative education school with services (OT, speech, consultant teacher) provided by local school district, which seems to be the best situation for him. I would have chosen an alternative school for him whether or not he was autistic because I attended alternative schools from 8th-12th grades & loved them. In Brendan’s school so many of the behaviours that would get him in trouble in “regular” schools, such as preferring to work either sitting on the floor or standing up, are considered perfectly acceptable. The kids don’t have to sit at their desks all of the time (actually, the only grades that even have desks are 5-6. The rest have tables that everyone works at together…) and they use many strategies for learning, rather than just the district-approved method. They are very flexible when it comes to individualised learning- they have instituted a daily schedule for Brendan with a built-in incentive/reward system that is helping him to learn in the classroom with the other kids (rather than mostly one-on-one in another room with his consultant teacher). Another boy in his grade has a similar incentive system, with the reward being that he gets to bake a cake or cookies for everyone on Friday afternoon! (There’s a kitchen for the students to use for 5th graders & up…) Mostly, Brendan’s teachers seem to genuinely like him. They treat him like a human being & not like someone just passing through their classroom. They work closely with us to find the best ways to help him be part of the school community. They find ways to accentuate his positives every day & I feel a great sense of relief & gratitude that he’s in a safe & respectful place. We are very fortunate…

    • http://whitterer-autism.blogspot.com/ mcewen

      We get right back the spectrum principal – what works for one in a particular situation does not necessarily work for another. But that’s why it’s called an INDIVIDUAl education plan. Best wishes

    • Helen Cox

      I live in England where inclusion is racing ahead at full speed and failing as quick as it is introduced. I have two children with Autism, one in a special school and one in a mainstream. The child in a special school is thriving and accessing his potential, he is currently asking me to help him with his homework of 27 spellings. My daughter, who is mainstreamed thanks to the now inclusion policy, spends most of her weekend crying and not understanding the lack of rigid structure that exists at home. I take exception to the lady saying her child does worse at special school as he copies the other autistic kids, this type of comment gave politicians the ludicrous idea that mainstream education would stop this behaviour. If this were the case, why is your child autistic, surely he would just copy the behaviour of his family at home and eradicate his autism on his own? Inclusion has given our authorities the excuse they needed to withdraw funding to our children and thus stopped them accessing the excellent services that exist within a special school. Do you really think politicians have your children’s welfare at heart or their budgets and targets? Here in England it’s the latter that is proving to be the case.

    • http://www.autismvox.com Kristina Chew, PhD

      Here, too, “budgets and targets” determine more than administrators would ever be willing to say….

      Watching the behavior of typical children, one sees many things that I am glad my son does not do!