Back to School: To be included, or not?
August 22, 2007 by Kristina Chew, PhD
Filed under Health
Yesterday, on August 21st, NPR ’s Talk of the Nation, aired a story on autism and education, Schools Strive to Meet Needs of Autistic Students. An accompanying blog post is entitled Mainstreaming Autism—-though a more accurate title might be “Mainstreaming Autistic Children,” as the NPR story was focused on how schools might best educate autistic children, in an age when more and more children are being diagnosed with autism.
My 10-year-old son Charlie attends a public school autism program. He is in a self-contained ABA classroom with other autistic children and receives speech therapy, occupational therapy, and adapted physical education through the school district. Charlie has been in the district’s program since June 2006 and has never liked—even loved—school so much. And I think this is the case because we have found the right school program for Charlie’s educational needs. Mainstreaming in an academic setting seems unlikely for Charlie at this time; we work on including him in settings (such as the swimming pool and in the ocean where his strengths are).
When it comes to inclusion, it is not (it is never) “one program fits all,” and the comments on the NPR blog- reinforced this to me. Some that I have been reflecting on as they highlight why inclusion is not always the right answer and what parents of children who are not autistic or “special needs” might think about the allocation of resources to autistic children (I have italicized some parts of each comment for emphasis):
I’m sure that inclusion works for some schools, some kids. I see no evidence of it being beneficial. I am still trying to have my son accurately diagnosed. Meanwhile, he’s drowning in the public school system. Here in Florida, most teachers are teaching their students how to take the FCAT, not how to learn. Many of these inclusion students suffer because they learn differently. In my experience, public schools are not equipped to handle these students. For the past year, I’ve been navigating my way through red tape to get my son into a private school where he can hopefully receive the services he needs. If this program is going to work, teachers are going to have to be trained and educated on how to deal with these students. Are teachers willing to do this? Who’s willing to pay for it?
Sent by Adrienne | 3:30 PM ET | 08-21-2007
I have 4 boys with autism. They are all over the spectrum. The oldest has been fully included since pre-school.He does grade level work iwth no accomadations [sic]. His twin is severely mentally impaired and attends a center based school. The other two (another set of twins) are still in pre-school. One is involved in inclusion, the other is not. I believe that inclusion should be the norm but there are reasons to not included. But, the reasons for not including should be based on the child, not the school or teachers. These children are citizens and members of society.
Sent by Maureen Van Hoven | 3:33 PM ET | 08-21-2007
As the father of a severely autistic (and blind) son who I believe to have been irreparably harmed by the extreme movement to inclusion in the classroom (I say extreme movement because the “system” seems to not consider any other educational possibilities).
I’m thrilled that so many other developmentally disabled students find success through inclusion but the implementation of the method has created an even more isolated group through an opposite effect… the severely disabled now have even less services available due to the increase in the “everybody can succeed” mentality. We can’t employ methods such as these to the exclusion of those that really needed the old-school methods of education and (for lack of a better word) institutional life. Sent by Mark Z | 3:39 PM ET | 08-21-2007
My sons’ school is the “magnet” for all autistic children in the district. Consequently, approximately 10% of the children in the school are autistic in some way. I REALLY resent what I see… everyday a enormous amount of resources being channeled to these children and the others losing out on the teacher’s time, attention and skill. I see this benefiting the autistic child much more than the “typically Developing” child. These children have a federal law that protects their classroom experience. What about MY child? My neighbor’s child? All those others sittin gin [sic] that classroom?
Sent by Kris R | 5:29 PM ET | 08-21-2007
To make inclusion work, what do not only autistic children, but also children who are no autistic and teachers, school staff, and parents need to learn?
You’re right on, Kristina, when you say “at this time.” Kids change, and no matter what you think will be the situation in the future, chances are very good the future will be very different.
If you had asked me just 5 years ago if Z should be mainstreamed, I would have said, “No, not a chance.” (That is, in fact, what I said.) Five years later, he is a Sophomore at a public high school here in St. Louis County. He has an aid that helps him navigate the day, and he has some accommodations the teachers much provide, but he fits right in with the crowd (though, of course, he stands out [not "sticks out"] from the crowd too).
He’s had some challenges (the biggest being not having the benefit of the indoctrination of 9 years of elementary school), but this setting works for him now. Five years ago, if he had had to go to a public middle school, he would have been lost.
As the parent of a non-autistic son, too, I’ve often thought about the questions Kris asks in terms of the resources applied to “special needs” kids. I don’t begrudge these kids the extra services and attention they get, but I share Kris’ concern about the other kids.
My question: Why doesn’t every child have an IEP?
I know it’s all about $$$ and time, but I would love to see our public education system turn into one that provides an individualized learning experience for every kid, beginning in Kindergarten through high school graduation. After all, every child is different, some are just more different than others.
(You may say I’m a dreamer, but I’m not the only one.)
My question: Why doesn’t every child have an IEP?
Because not every student needs one. The IEP is designed to help measure the progress of a student who is identified as needing more help. The point is to write attainable goals that the child can meet and can be measured since the goals under regualr curriculum or social expectations are unrealistic. I have two children who do not have IEP’s and my Daughter is on autism spectrum and has one. My other children would not benefit from one since the goals of the average curriculum meet their needs. My oldest is recieving enrichment services and does not a more specialized program. Most public schools today do teach to children differently. They are not the same schools we went to and they do relize that all children are different. I do happen to feel it would be a waste of resources to go through the IEP process for every student and unrealistic to expect of the teachers.
“at this time.” Kids change, and no matter what you think will be the situation in the future, chances are very good the future will be very different.
I do agree with this copletely. I would never have thought two years ago that Rebekah could have been interegrated into a regular classroom. Since we have curtailed her self inflicted injuies and worked on her social appropriateness we are going to have her in a regular classroom with a one to one for Math snce this is her strongest subject. I do not know what the future will hold but I celebrate every victory and I know she will continue to surprise me.
Julie,
It was probably a poor choice of words on my part. Instead of “IEP” I should have said “individual education plan”, a more generic description opposed to the specific implementation imposed by law on the “IEP”. While it may be true that every child doesn’t “need” this level of support, I think that every child DESERVES it.
While I understand that the IEP as currently implemented serves a valid need in today’s environment, it also fortifies the notion that autistic (and other “special needs”) kids are somehow deficient. My intent is to recognize that every child is different, and has unique potential and learning styles/abilities that should be accounted for .
You say that “the goals of the average curriculum meet [your children's] needs”. I would agree that it may meet their needs in the context of successfully completing school program, but this is an arbitrary goal that isn’t based on the potential and needs of individual kids. I would like to see curriculum based on reaching (and expanding) the potential each kid has, instead of meeting these arbitrary goals. (Like I said, I’m a dreamer.)
I would agree that many (though not all) public school teachers teach differently these days, and really do try to work with each kid’s abilities and potential. I would disagree, however, that the public schools themselves have changed. I don’t think it is ill intent on anyone’s part, I just think that the inertia of the system and the focus on standardized testing makes it almost impossible for meaningful change in a short period of time.
I’m glad to hear Rebekah is doing so well.
Today, I call it “inhospitable integration.” What we often do is include disabled kids who reach some semblance of indistinguishability from the other children. For most disabled adults I know, inclusion wasn’t so great because as disabled people, they were looked at strangely — they were the ones expected to BE LIKE the others. It still happens. It just happened at my step-son’s camp where he had to really fight to keep the twelve year autistic boy at his camp because, to the others, he looked “weird.” There was no sensitivity or any reciprocity.
We have a ways to go, but it starts with advocating for everyone’s right to belong and to have access. It begins by keeping disability in the public eye — not shuffling it away in institutions.
As is with all races and creeds, we are part of a larger whole, but we also feel comfort and defer back to our communities, where we feel most at ease, where we are best understood, and are like others.
Inclusion must exist, as is our right to have our distinct communities. But if Adam doesn’t want to go to a regular camp or a “regular” school one day, that’s his choice. He may say to me one day, “I don’t feel comfortable here.” And that’s just fine with me.
It doesn’t stop me from advocating for hospitable inclusion, understanding, sensitivity and better education in the wake of all those necessary things we must work to achieve in the meantime.
Brett, I remember all that you shared about your son’s early years here in NJ—-it’s fabulous to hear about how he is doing!
We need to keep the “continuum of services” in mind and not be lockstepped into full inclusion for each and every child. Part of my job as a professional is evaluating whether the home school is the best choice for a student or if the student would benefit from a more restrictive environment.
Unless there’s a blatant problem (and sometimes even then), it takes a while to make this decision. And the hold up is not always the school–it can also be the parent.