How My Autistic Son Got Lost in the Public School System

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Teachers do the best they can, but they're not psychologists—and parents can't expect them to be. 

henry-top.jpgThe author's son (Photo by Amy Mackin)

The waiting room was loud and chaotic. Toddlers were stacking blocks, then squealing with excitement as they knocked them over and watched them fall. Baby toys were chiming and buzzing. A cartoon was blaring on the television mounted above us.

My son Henry (not his real name) was not playing with the other children. He was nestled in my lap, quietly leafing through a picture book. My winter coat partially enshrouded him from the bedlam encircling us.

When we were finally called in, our pediatrician examined Henry physically and declared him a healthy 15-month-old. Then she began to ask me a lot of questions about his behavior.

"What words does he say?" She asked.

"None," I replied. "But he makes a few sounds."

"How does he tell you when he wants something, like a drink or a snack or a toy?"

"I just have to figure it out."

"Does he point to the cabinet the snacks are in? Does he point to the refrigerator when he's thirsty?"

"No," I answered.

The pediatrician said that Henry should be speaking more than sounds at this point, at least a word or two, and communicating with us using either spoken or nonverbal cues. She explained that he might need a little help jump-starting those skills, then she handed me a phone number for our local Early Intervention Program.

I wasn't worried. My daughter also had a speech delay. A speech therapist came to our home twice a week to give her therapy, and now you couldn't stop her from talking if you wanted to.

When the time came, a group of clinicians arrived with toys for Henry and paperwork for me. They asked Henry to perform various tasks, such as stacking blocks and sorting shapes by color. Henry sat in his booster chair at our kitchen table and dutifully tried to comply.

A week later I met with one of the clinicians. The team had determined that Henry did in fact have a speech delay and qualified for weekly, home-based, therapeutic services.

The therapist who showed up a few days after that meeting introduced herself and then approached Henry. As she got closer, Henry's body language changed. He was not buckled into the safety of his booster chair this time, and she was invading his space. She tried to play with him, and he started to cry. She touched his arm, and he began to wail. By the time she left, I was crying, too.

That therapist came two more times before I mustered up the courage to call the Early Intervention Program and ask for a new clinician. I worried about hurting her feelings, but she made Henry so upset, I just couldn't watch it anymore.

Three weeks later a new therapist arrived. Henry was sitting on the living room floor playing with his Matchbox cars. This new therapist quietly watched him for a minute or two.

"Does he always play like this with his cars?" the therapist asked.

"What do you mean?" I replied.

"Does he always arrange them in a line like that?"

"Yes. He always makes a long line. Sometimes he sorts them in the line by size, color, or style. He can sit for hours doing that."

She nodded. I thought it was almost brilliant that a 16-month-old could arrange such a large grouping so meticulously and amuse himself for so long. I wondered if she thought so, too.

The therapist then approached Henry slowly. She lowered herself and sat cross-legged about a foot and a half away from him.

"Hi, Henry. My name is Hope. Can I play with you?"

Henry ignored her.

"Can I have one of your cars to play with?"

Henry continued to ignore her.

She reached out to touch one of the cars, and Henry's body began to shake. He made a sound, the beginning of a cry.

Hope pulled her hand away. "That's okay, Henry. I brought some of my own toys."

She reached into a bag and pulled out a wooden puzzle. Henry glanced over at the toy.

"Would you like to play with my puzzle, Henry?"

Henry cautiously assessed the scene and then moved a few inches closer to her.

"This is how you do it." She demonstrated how to take the large wooden pieces out and put them back in. Hope then handed Henry a piece. He took it from her hand and tried to fit it into one of the openings.

"Oops. Doesn't fit there," Hope confirmed.

Henry kept trying. When he maneuvered the piece into the correct spot, Hope exclaimed, "You got it! It fits!"

Henry smiled.

Hope continued to work with Henry, one-on-one, for another year and a half, right up until Henry "aged out" of early intervention and transferred to a special-needs preschool. She built a relationship with Henry and, eventually, she was able to remove one of those Matchbox cars from the line without Henry's falling apart.

Henry loved Hope. Her name was one of his first words.

* * *

I tell this story of Henry's first therapists because somewhere along the way I forgot it myself. It came back to me only very recently.

Henry was in preschool when he was first diagnosed with pervasive developmental disorder. We were told, "The more therapy, the better, at his early age," so we barraged Henry with assistance. In that mission to get him as much help as possible, I somehow forgot that very first therapy experience. I forgot that not everyone would have the right background or the right attitude to deal with my child.

During free playtime, I saw Henry playing in a corner by himself while the other children played together.

I forgot this when Henry was walked out of the building one day in his very first year at our town's special-needs preschool. I learned that Henry had been kept back from recess while the other kids went out to play. The school explained it was a consequence of his behavior—he would not allow the teacher to zip up his coat for him to go outside, and he became irate.

When I sat down with Henry in the safety and peacefulness of our own home, I asked him if he could try to tell me why he would not allow the teacher to zip his jacket.

Henry told me, "I-I-I z-z-z-i-pppp."

I immediately understood. For the past few weeks, I had been working with Henry to teach him how to operate a zipper. He had been trying to tell the teacher that he knew how to do it himself. This was great progress for Henry, but the teacher didn't understand and punished him for it.

I forgot about Hope when I dropped by the public kindergarten numerous times unannounced, just to peek in and see how Henry was doing. During free playtime, I saw him playing in a corner by himself while the other children played together. During recess, I saw him sitting alone under a tree as the other children played tag or conquered the playground equipment.

I forgot yet again, when Henry moved to our town's primary school at the beginning of third grade. The summer before this transition, Henry had seen another pediatric developmental specialist, who told me what a sweet and intelligent boy Henry was. Then she said, "Henry qualifies for an autism spectrum disorder diagnosis." I remember thinking her choice of words made it sound like we had won some grand sweepstakes, like Henry was now part of some exclusive club.

Henry's updated diagnosis didn't really change anything from my point of view—we were still dealing with the same challenges that we had been dealing with for years. However, this diagnosis was more concise, easier for other people to understand. Everyone knows the word "autism."

Henry had been on an Individual Education Plan (IEP) — a legal document spelling out the specific educational accommodations he needed — since preschool. He would continue to stay in his mainstream classroom and be pulled out for speech and occupational therapy. The elementary school team told me they would make sure he was adjusting to the new school's larger environment.

Unfortunately, again, no one was paying attention during the most difficult parts of Henry's day—the unsupervised social settings. Henry suffered a serious breakdown that year. He hadn't told anyone, but, as it turned out, he had been bullied on the school bus for months.

I was angry and frustrated, and so very tired. My youngest child, Henry's little brother, had started preschool three days a week. I had gone back to work part-time, but I spent every free moment researching autism.

When I stumbled upon an article about Asperger's Syndrome, I knew this was what Henry was living with. The sequential obsessions, the above-average intellect but below-average social awareness, the need for stringent routines, the repetitive hand movements, the lack of interest in relationships with peers—he fit this diagnosis perfectly.

I explained this to the developmental specialist, but she told me, "No. The major difference between Asperger's and autism is the speech delay. Children with Asperger's don't have speech delays."

How can this be, I wondered, when he exhibits every other characteristic of this disorder? But I'm not an expert. She knows better than I do.

Hope and Henry's story continued to elude me after he came home from school for the third time soaked through his clothes. The teacher had designated specific times for restroom breaks, and Henry was afraid to speak up if he had to use the bathroom outside of those times. He likes rules, and he follows them, to a fault. When he had an accident, he was too ashamed to tell anyone, so he sat in his own urine for hours. Not one staff member at the school ever noticed.

In fifth grade, Henry wanted to try out for the school play. I was extremely nervous, but also overjoyed that he wanted to participate. I wrote a note explaining to the theater director that Henry had autism and needed specific instructions on when and where to do things.

After the play was over, all the children eagerly emptied out of the auditorium to find their parents. The crowd slowly dissipated, but still there was no Henry. I started to panic and began to search the school.

I found my son waiting in the back of the cafeteria, all by himself. At the end of all the rehearsals, the kids had been told to wait in the cafeteria and not to leave until the theater teacher had dismissed them. Henry could not identify the difference between rehearsals and the actual production, so he'd gone to the cafeteria, as always, and waited to be dismissed.

None of Henry's teachers had bad intentions, but none of them fully understood what Henry needed. And none of them had the courage to admit that the public system they were a part of wasn't working for my son. I continued to hear, "The public school is the best place for Henry. We can provide him therapy and special education services here." And I continued to believe it.

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Amy Mackin is a writer based in the Boston area.

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