How My Autistic Son Got Lost in the Public School System

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.

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Amy Mackin is a writer based in the Boston area.

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