Inclusion is the goal.  It’s the ideal way for students to learn, because inclusion seems to be synonymous with equality.  Everyone deserves to access the curriculum.  Everyone deserves to form relationships with people who are outwardly different or invisibly so–that’s how it will be in the real world.  Everyone benefits from the classroom strategies that support students with disabilities.  Those are all true statements… but add a measure of reality, and it’s not that inclusion is no longer good, but the effects for the people involved are not as simple as we want them to be.

I was diagnosed with autism at 21, and it wasn’t a shock for my family nearly so much as a finally!  The issues were not unnoticed–they were only unnamed, and it was very, very hard.  In school, I was way ahead of the game academically, but I often heard that I was “smart enough to know better!”  Know what?  I hated the crowded halls, the lights, the alarms… I actually felt sick from overstimulation but had no way to understand or communicate it.  A “2E” kid (twice exceptional, both gifted and disabled*) with only one E identified has half her educational needs unmet.

Twenty years later, the real world is just as challenging. I’m very verbal with facts and information, but true expression comes through writing far better than speaking.  I’m extremely hypersensitive, and grocery shopping is something I still need direct support to manage; I have trouble making sense of the items on the shelf, because they blend together.  I might as well be looking at a math test or a fish bowl.  The explanation helped others understand, but it took 25 years and maybe awful grocery trips to get there.  Sensory overload impacts my communication, especially when I’m out, so you might get half the correct words, quite a few it’ll-do words, and a lot of pausing… and they go through a blender before I say them, so they might be out of order, too.  I’m often misunderstood and then very frustrated.  Socially, I have little in common with most people my age, unless they like cats, and too much noise or fast-paced conversation are a roadblock to participation.  It’s not that most people want to exclude me.  The barriers aren’t really in their control any more than they are in mine… not unless people stop having multi-person conversations and shoppers stop bumping other people…

inclusion is the goalMost classrooms have sensory, social, and communication barriers built right into them, too.  Being with a horde of same-age kids who were essentially twice my age socially but half academically and facing changes in schedules and subs who use sarcasm… the lights flickering, the bright posters all over the walls, the hurry-hurry-hurrying, the handwriting… the balls that fly around at recess, the screaming lunchroom with its permanent stink, the bus ride home… even if every student were nothing but kind, there are many reasons that school is inherently exclusive to some kids.  It was much harder to be in the room and look in the right direction than it ever was to get my straight-A grades.

As an adult, having been mis-labeled, mis-understood and just downright baffled long enough, I’ve mostly secluded myself.  Work, leisure, friendships–all based in the autism/disability communities.  I’m involved with an autism nonprofit; it’s both my job and my (only) social outlet. I love that I can mentor instead of being an actress.  I can engage without the fear of a dead end after one question–I still get stuck, but they see the social connection and not the poor delivery.  If things get hectic, I can retreat without being badgered or seen as rude.  I came in late recently and joined the eight other girls at the table.  I was greeted with questions about my cat, how she’s doing, did I have new pictures–my love of cats has typically been cause for a little sarcasm and a chuckle, but these friends, none of whom are all that into cats and with their terrible social skills made me feel like I matter.  I do matter, and I know I do, for the first time in a social setting.  That’s a great feeling, mattering, because they matter to me.

But it definitely doesn’t qualify as an inclusive setting–it exists as a safe space by nature of it being segregated from “everyone else.”  Maybe inclusion isn’t about the other people present or the specific location so much as it’s about the individual’s experience in a setting.  Plopping the autistic person into a group or classroom does not mean it’s inclusive.  The same space, the same information, the same opportunity–they can be even more other-ing by making the differences even more obvious.  True inclusion is a layered, complex thing, but if it’s going to work, the child first and foremost has to feel like a part of things.  Forget jumping into the gen ed class for social studies–the child needs to know what had the class cracking up that morning.  He needs to be a part of the transitions before and after social studies, not inserted into a chair once everyone else is ready.  He needs to be part of the routine, not exempt from it.  He needs responsibility in the classroom, to serve in meaningful ways and not only be served.  He needs to feel free to participate without others staring, to take a guess at the answer without fear of being wrong.  He needs to feel like he can asks questions and respond to other students.  He needs to explore his own strengths and weaknesses. He needs to be treated as a peer; children need to understand disability and capability are not opposites, and that we all show our strengths in different ways.

Inclusion is more about a culture than it is being privy to the same information or experience.  I can sit with my typical peers at a game or go out to dinner and be surrounded by the same conversation… I might hear all the same words, I might see the same plays on the field, I might even have information to contribute… but the sensory, social, and communication barriers in those settings keep me separated.  It feels like their evening wouldn’t change if I poofed into thin air.  If the highest goals of inclusive education are for people to be in the same space for a little while or even for them to be in the same space and attend to the same thing… I think there are better ways to spend our time and effort.  But our goals are much broader, deeper, and worthier than that–we want to foster mutual comfort, connections, and guide students toward seeing past labels to the competence and value in everyone.  When the “included” student is wheeled in and parked on the side of the classroom halfway through the class and the rest of the kids don’t know more than his name and his wheelchair, kids are taught how to tolerate that child in their space for a time. They learn to ignore their curiosity and steal sideways glances to figure it out.  They see that the “included” child must always have an adult right next to him like the baby brother at home.  Not surprisingly, the adult disability community talks about those very same barriers.

In the autism-only spaces of my life, I’ve learned things like reciprocation, when to hold my tongue, and what to do when I don’t have the right words or need a break or need help.  I’ve learned about myself as a friend, an employee, and a leader… that I can ask someone to turn the volume down, that I’d rather be seen as a little odd for being kind than hold back for the sake of being normal.  I was never comfortable with men and feared people who felt authoritative, so I have only ever interacted with other girls and young women.  Finally, I have friends of every sort without fear; I’ve learned that I may have a lot in common with a kid half my age and how to interact with people when there are really no common interests (answer: awkwardly!).  The center is a safe haven, but not because it’s all people just like me.  Familiarity with autism is the only unifying factor there, and that does nothing to make us a uniform crowd. It’s really the culture, one where things like kindness, creativity, and giving someone the benefit of the doubt are the currency–instead of the common currency of impressing other people.

Finally (and cautiously…), it doesn’t quite sit right with me that spending time “included” with everybody is automatically valued over spending time in a segregated setting.  In school, many of us get hung up like pinatas while some “typical” peers take daily strikes for years–and yet this is the social scene where we’re encouraged to learn to belong?  I had some experiences like that, but even more, I ran into situations where I would ask if there were issues between a friend and I, knowing that I don’t pick up on them, and the friend would say no and then later tell me I should have known she meant yes.  I like my friends who use words that mean what they say.  I don’t worry about every chuckle being at my expense.  They aren’t my last-chance friends; they’re the people who are fun and supportive, ones who share my interests and make me feel like I’m valued as a person.  A disability alone should not disqualify a kid or a group as first choice friends.

A setting is considered more or less restrictive because of the people in it.  If we had a self-contained room and a general ed one and switched the kids, we’d have switched the level of restriction.  While a separate class might feel like accepting defeat after a series of failures in less restrictive settings, consider the people who define that setting and how tied up in the “last option” concept their identities come to be.  I think about the sad fact that if we were all the same age, my closest friends and I would have never even known each other existed if we attended the same school.  We pull kids out of the general ed classroom for being disruptive or needing sensory breaks or taking too long to learn to read, but the kids who bully or manipulate others even to an extreme aren’t pulled to a restrictive social environment.  After years with those kids (and adults), I was having a tough time, so I focused on the healthy friendships in my life and the places I liked to be.  For now, I’m staying right here, where I’m challenged and amused and supported and needed–I’m exactly who I am, and I’m happy.

We get a lot of promises from people who have just the thing–books, games, apps, plans, curriculum sets, charts, devices, diets, programs– to teach us how to act more like them so that maybe someday we just might be “included” in their world.  But it’s funny… they never ask how they can learn to be more like us…

Photo Credit: Bust it Away Photography/Flickr

Lydia Wayman is an autistic young adult and advocate. She has her B.S. in Elementary Education and MFA in English and Creative Writing. Lydia combines professional knowledge with personal experience to reach parents and professionals through her blog, books, articles, and speaking engagements. She also works part-time at a nonprofit autism resource center and enjoys mentoring girls on the spectrum. Her message is that people are awesome not despite their differences but precisely because of them.