How My Autistic Son Got Lost in the Public School System

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

The 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.

By this point, however, I was starting to lose faith in what the developmental specialists were telling me. An autism support website mentioned a psychologist not too far from me who specialized in Asperger's. We visited his office, and after spending some time talking with Henry, the psychologist explained that he had seen many patients with Asperger's who also had a speech delay. He went on to tell us that the entire spectrum of autism diagnoses was under review. He said, on the basis of his experience, Henry did, in fact, fall into the Asperger Syndrome category.

After that visit, Henry had an afternoon of neurological testing, and when the results were calculated, his diagnosis was confirmed. He fell in the part of the spectrum for Asperger Syndrome.

It was like I had been combing the five boroughs of New York, mindlessly searching block after block for a specific boutique that sold the exact item I needed. Then, after months of searching, someone had handed me a map with the neighborhood I was looking for circled in bright red ink. I could now focus my search and find the specific help Henry needed.

That's when I finally remembered the story of Hope and Henry.

In early June of this year, I got a call from the office at Henry's school. Henry had forgotten to change out of his pajama top that morning. My other kids would have joked about it and worn the top throughout the entire school day. Not Henry.

The secretary told me that Henry was distraught and would not go to class. She seemed a bit annoyed, and I understood. She had hundreds of children to deal with, and this was an unwelcome disturbance in her day. I assured her I would be right down with a new shirt for him.

When I arrived in the office, I saw Henry sitting in one of the waiting area chairs, quietly sobbing. Next to him was his teacher, Mr. Danforth. (I've changed his name for privacy.) Once Mr. Danforth was informed of the situation, he had gotten an aide to watch his class so he could sit there with Henry, waiting for my arrival.

This was typical of Mr. Danforth, and it was why fifth grade was Henry's best school year ever. Mr. Danforth tried to understand Henry. He made lots of small concessions that made a big difference.

Special-education departments focus on helping students with learning disabilities. But kids with Asperger's often don't need academic support.

Every time Henry bought lunch, he exited the cafeteria line and stood aimlessly at the front of the lunchroom, looking in vain for a seat near the few kids Henry felt comfortable with. Henry liked buying lunch, but he hated being in this situation. For quite a while, he brought pasta and sauce in a thermos every single day so he could find a seat before the crowd arrived.

When Mr. Danforth discovered this, he told Henry he could leave class a few minutes early so he'd be first in line and could find an open seat. Problem solved.

When Mr. Danforth learned that Henry was still shy about going to the bathroom without permission, even though his IEP allowed it, he said, "Henry, I know you're going to the restroom at nine, eleven, and two every day. You have my permission for the rest of the school year." That's all Henry needed to hear.

When Henry felt invisible, Mr. Danforth decided to do a class project on Fenway Park's season opener, knowing that Henry's latest obsession was baseball. He suggested, "Henry, why don't you go up to the board and give us your version of an opening day roster?" Henry didn't hesitate. He proceeded to the board and listed out who he believed should be playing and what their batting order should be. He knew every player available and each of their individual statistics. The other kids in the class were mesmerized and asked, "Henry, how do you know all that?"

Mr. Danforth took the time to build a relationship with Henry, to get to know who he was and what he needed. Mr. Danforth was a good fit.

* * *

The autism spectrum is wide and varied, and every autistic person is unique. People like Henry need someone looking out for them, particularly in overwhelming environments like school. The problem is that public schools are mostly worried about academics and test scores. They have to be—their success in those areas dictates the percentage of state and federal funding they get. Few schools have designated psychologists (most often, multiple schools share the same one). Teachers aren't psychologists, and asking them to be is not fair.

This puts kids with Asperger's in a particularly precarious spot. Many of these children are above average academically, even gifted in certain subjects. Special-education departments tend to focus on helping students with learning disabilities. But kids with Asperger's often don't need academic support. They need help navigating social interactions. When typical middle school boys are showing interest in girls and competitive sports, their Asperger's counterparts are often still playing with toys and building with Legos. The Tooth Fairy and Santa Claus are still very real for many of these kids, even as they approach the teen years.

My husband and I knew that the middle school where Henry was headed in September, with its 1,200 students and constantly changing schedule, was a disaster waiting to happen. And we knew that Henry's unusual mannerisms, rigid routines, and monotone speech would make him a target for bullies.

When we met with Henry's counselors, psychologist, and administrators to discuss the transition, everyone assured us he would do just fine. But they could not offer him a specific person — an educational aide or a designated teacher — who would be responsible for guiding him through. After that meeting was over, I turned to Mr. Danforth and said, "I'm worried."

"I am too," he replied.

I went home and entered Henry's name in the lottery for two smaller charter schools. I spent the rest of that afternoon looking into private schools, but found that most of them were not only too expensive for us but also ill-equipped to deal with a student like Henry.

* * *

Later that June evening, while our two boys played happily in the backyard, I shared the day's events with my husband. I explained that even in a class with one of the most caring, competent teachers Henry had, I'd still needed to drive to school with a new shirt because Henry couldn't wear a pajama top in public. Henry's older sister had heard about the incident from her friends with younger siblings at Henry's school. The kids thought Henry was weird because "what fifth-grader cries over wearing a pajama top?"

My husband and I both sat silently for a moment. Then I said it: "I can't send him to the public middle school. I just can't."

My husband let out a sigh and replied, "I know."

I sat my son down later that week and asked him, "What do you think about homeschooling?"

"I don't think I'd like that."

Great. I'm out of options, buddy.

I pleaded, "But Henry, I feel like you're really nervous about going to the middle school next year, and that's part of why you've been really sad and upset lately. What do you think?"

"So I would stay home with you?"

"Yes. But we could try and find some outside classes, too. And you wouldn't get so tired at the end of the day, because we could take breaks when you needed them and get more done in less time."

"So the school day would be shorter?"


"Okay. I guess we can try it."

I eventually found a company that offered an all-inclusive, non-religious-based, sixth-grade curriculum. At the end of every month, I'd send in Henry's assignments and a teacher would give him his grades.

On the first day of school, Henry and I sat down at the kitchen table, both of us still in our pajamas, pencils in hand, and started going through a sixth grade English workbook I had picked up the day before.

We learned about suffixes and prefixes. And we laughed about the silly words the publishers had chosen to illustrate the concepts. We took breaks when we needed to. We had lunch together. Later that afternoon, instead of being exhausted and irritable, Henry asked if a neighbor boy could come over and play. Henry rarely asked for anyone to come over to play. Just trying to get through a day of traditional school had drained every ounce of energy he had.

By the end of that very first day of homeschooling, I knew that everything was going to be okay. Henry and I were going to get through this. Better than that, we were going to do great.

* * *

We've been homeschooling a few months now, and the change in Henry is nothing short of miraculous.

Through a neighbor, I found a local homeschool group that gets together every week for three hours in the afternoon. Instead of a 20-minute recess, in which Henry hides behind a tree trying to manage the chaos, he has hours to play with a group of seven to ten other children. He is building real relationships now for the first time in his life.

We found a home-school enrichment program, where Henry takes math and geography classes once a week with four other children. He loves it. Instead of pushing him out the door for school, I find him standing by the door asking, "When can we get going?"

Henry is still on an IEP and continues to receive some therapeutic services at the public school. I contacted one of the science teachers there, explaining that Henry would really love to participate in her after-school robotics club. She said, "Absolutely! Bring him over!" As far as I know, I am the only parent in our district who has constructed this type of cooperative agreement with a public school. Henry is unique. We needed a unique solution. We found it.

This is not to say that the last few months have been easy. I work all day Friday, Saturday, and Sunday in order to be home during the week for Henry. I miss my children's baseball and volleyball games. My husband works as hard as I do and helps wherever he can, but it's a daunting task.

But as parents, we make decisions based on a variety of experiences.

That moment when I entered the school office with a new shirt for Henry, and I saw him sitting there sobbing, it wasn't logic that spoke to me. It was the very core of who I am — the mother, the human being — who said, "No more."

Since that moment, I've had to stand my ground with psychologists and educators, and even family. I am no expert on parenting, on autism, or on homeschooling. But I am an expert on Henry. I know him best.

I am Henry's Hope now, and I know, unequivocally, I'm the most qualified person for the job.