(istock)

“I wish I got to spend more time with Charlotte,” the teacher told me with a slight frown. “It’s hard for her to make friends when she’s not here very much.”

We were sitting at a child-sized table, perched awkwardly on small blue plastic chairs. It was parent-teacher conference day, and I shivered a little in the unheated classroom.

I smiled at her because I knew she meant well, but I didn’t need a reminder about how valuable inclusion is; everyone from my autistic daughter’s teacher to the principal of her school has waxed poetic to me about its merits for the last two years. They all agree that it’s what is best for her. I’m the only one who seems to notice how painful inclusion actually is.

It would be easy for my daughter to get lost in the school system. She isn’t a quirky savant and she doesn’t require intensive supports. She is a little girl who loves My Little Pony and cats, and who shuts down when she becomes overloaded. Most of the time she sits quietly in a corner of the room with her head turned away, her face hidden in her hair. Meltdowns at school are rare, and when they do occur her teacher seems surprised, as if it were the first time. She forgets that my daughter holds her anxiety and stress inside. But when Charlotte gets home she snaps like a spring that’s been too tightly wound. Where her teacher sees quiet compliance, I see a ticking time bomb of sensory overload.

I went into my daughter’s education ready to go to war for her right to be included. I read all of the studies and articles that told me she would benefit from inclusion, and I insisted she have an aide with her in the general education classroom, instead of being taught in a separate special education setting. I even worked with the special education team at her neighborhood school to have her transferred into another school with an inclusion-based program designed specifically for autistic children.

Now my daughter attends an alternative public school where parents plant tulips in planter boxes in the spring and the hallways are lined with Native American villages carefully crafted by tiny hands. I chose it because I wanted my daughter to have the best education I could imagine, but also because they told me that at this school she could participate just like any other child. When I remind my daughter about all of these amazing projects, she dismisses them with a shrug. “They aren’t My Little Pony,” she tells me.

My daughter’s classmates have benefited from having her in their class. When she has meltdowns, they gather around her and do their best to console her — even though that’s exactly what she doesn’t want. They ask her to play and include her in their projects and games, but Charlotte only wants to play ponies and kitties, and they are in third grade now. Fewer and fewer kids want to play those games, and she prefers playing alone over trying new games.

The first few times I saw my daughter sitting alone at a table at lunch, my heart broke. I railed against the cruelty of kids who excluded her for being different. I was enraged at the lunch room workers who did nothing to help her. But one day I asked my daughter why she was always alone at lunch. “No one else sits at that table,” she told me. “I like to be alone.” My daughter wasn’t desperate to make friends; she was searching for a tiny oasis of isolation in that crowded lunch room.

Charlotte isn’t shy about telling me what she hates about school. She doesn’t like going to school because there are too many people in her classroom. I look into her big, earnest brown eyes and I remember the panic-stricken face of the toddler who couldn’t make it through a trip to Target without screaming “People!” and begging me to take her outside. I don’t know what it feels like to be her, cringing from sensory pain, but I know the inclusive classroom I fought so hard for isn’t the panacea I expected it to be.

The push for inclusion came from a desperate desire to eliminate overcrowded, often intolerable separate special-education settings for autistic kids. If autistic kids can spend their days with their peers, it makes sense to include them. Some kids thrive in the general education setting, but my daughter is by no means the only autistic child who shuts down and goes silent at school, only to explode at home. In the rush to include everyone, no one created an option for kids like my daughter, who don’t benefit from either inclusion or separate special-education settings. There is no small-group setting with individualized curriculum and support available, even though that’s what she needs to learn and thrive. There are only two options, each of which comes with its own problems and concerns.

I gave inclusion two years before I threw in the towel. I cut my daughter’s time at school to half-days, and reduced the time she spends in the general education classroom during her mornings at school. She spends her afternoons at an autism-focused therapy center, where she loves her quiet therapy room and her therapist, who likes My Little Pony too. It didn’t take long for her to begin telling me that she wishes she could go to therapy all day instead of school. It took even less time for her to finally learn how to read. She made more academic progress in 12 weeks of half-days at school than in the prior two school years combined.

A week after the conference, I picked up my daughter from school to take her to therapy. There was a picture in her mailbox, a child’s drawing of two little girls playing with a white stuffed cat. I asked my daughter if she drew it, but she shook her head. Her teacher told me she played with a little girl named Daisy that day, and Daisy told us with a shy smile that she drew the picture for Charlotte. I was elated, pleased at this evidence that Charlotte is being included. Charlotte has friends.

But Charlotte was already out the door, swinging the long white tail of her stuffed cat behind her.

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