“I’m stupid; my brain is wrong, and the only way to fix it is to die.” How many parents have heard these words from a neurodivergent child? How does one respond? “I wish I could die and come back with a new brain.” How many parents have ever felt this way about themselves because of their own neurodivergences? How unsettling is it to relate to their child’s words? “I’m stupid; my brain is wrong, and the only way to fix it is to die.” How badly have their hearts been broken? How helpless have they felt hearing their children express this belief? How much have they wanted to help without knowing what to do? “I wish I could die and come back with a new brain.” How often have children arrived at this thought because of punishment-based behavior methodologies, point-based behavior systems, ineffective rewards programs, seclusion, restraint, or untrained code responders that public school teachers and administrators consider appropriate for children with autism?
These words, my son’s words, are words that haunt me, and this is the story of our struggle to understand why our lives seem to have little value compared to others as we contend with the unfairness and hypocrisies in the world around us. While much of it unfolded in confusion, panic, pain, and heartbreak, evidence gathered from a complaint my wife, and I filed with our state board of education, and a subsequent due process complaint provides many of the details below, which we, together with our counsel, pieced together in time. It’s a story of systemic disinterest in considering different perspectives in educating neurodivergent children, even when the current approach is clearly not working. It’s a story about how educating children is not even a top priority on public school district agendas. It’s a story of blatant hostility toward parents who want to help their son, who believe there’s always room in life to learn more, to improve themselves, and to improve the lives of others. It’s a story of circular logic, contradictions, deception, dishonesty, and outright falsifications fused together by one school district’s desire to win at all costs, regardless of the effect it may have on a child and his family, and regardless of how much additional work it takes to do so rather than simply opening its mind to different approaches. And it’s a story of the legal disinterest in holding schools accountable for their actions or holding them to standards that every child deserves.
Until the age of six, my son was a happy, free-spirited, creative, and well-behaved little boy. My wife and I would take him and his sister to nice restaurants and see the look of fear on others’ faces as we brought in two children, only to have them approach us later to compliment us on how well-behaved and happy they were. I would take my son and his sister to costume shops, and he would put on crazy masks, become different characters, and make his sister and me laugh. In stores, he would dance to music, smile, and act sweet and silly. He would compose, memorize, and perform his own musicals for us in the evenings: My Voice Is in the Mailbox, Shauno, and the one about the guy who wanted more than anything to be a waiter but couldn’t.
He began early childhood education (ECE) in our district for speech delay and occupational therapy in their early childhood and kindergarten center shortly after turning three. His two years in ECE and year of kindergarten were positive experiences: his teachers were warm, caring, and supportive. He and I felt comfortable and welcome in the learning environment. His teachers appeared to genuinely care about him, and my wife and I had a good experience collaborating with them in his education. I attended the holiday parties, I read books to his classes. My son had no behavior issues whatsoever, at school or at home, and was an attentive student who liked school. It seemed everyone at school only had nice things to say about him. While my wife and I understood he was unique, he’d yet to receive any formal diagnosis of autism or anxiety. He was considered borderline. He made eye contact, and he didn’t engage in stimming behaviors as even I did. He was proclaimed by our school district’s assistant director of special education to be uncommonly intelligent, and we were assured he was going to be very successful going into first grade. “He’s so smart,” he told us, “he’s going to do so well here.”
His autism diagnosis and associated anxiety disorder arrived as he entered first grade in the same school district but in a new building during the global pandemic. In some ways, he fit the PDA profile, although PDA was not something our district had knowledge of, nor something they recognized, despite our attempts to educate them. For most of the year, he was limited to remote schooling, a model less effective with neurodiverse children, as his predetermined separation between school and home collapsed. Soon after remote schooling began, my wife, our ABA therapist, our BCBA therapist, his additional two aides, and I began to see warning signs that his teachers appeared not to understand neurodivergence. He was placed in general education with pull-outs for special education in reading, math, speech, social work, and occupational therapy. He would be transitioned out of class so many times a day that he was unable to make any in-class connections. His teacher made little connection to any of us either, referring to my wife and me in communications with her colleagues only as “these people.”
“What am I supposed to do about these people,” she wrote to the principal. Not once did she interact with us directly.
His special education teacher struggled with technology, opting to hold books toward her camera, which he couldn’t see, and instructing him to read. She confided in my wife in a telephone call that she didn’t believe he was autistic and later testified in our due process hearing that she had no specific training with or knowledge of autistic children. The occupational therapist helped our ABA therapist learn how to teach handwriting, as she was unable to do so in a remote setting. The social worker was unable to connect with him, choosing to teach exclusively through competitive gameplay, which he failed to understand and in which he had little interest. Worse, because we had to dedicate his ABA therapy to helping him with school, he was unable to get the support from ABA therapy that would have been beneficial to him in the evenings, as it was intended to provide him with a friend to help support his social development in an after-school setting. In time, we also witnessed the general failure of ABA therapy – not in that the therapists were too harsh, or it didn’t work – his therapists were, in fact, quite caring – but they seemed poorly trained, inconsistent, and didn’t have the experience to provide him what he needed. Therapists were shuffled in and out throughout the year to support other children who were more in need. Eventually, my wife and I were told that our son was too advanced for them to help, and shortly thereafter, the company providing support ceased operations.
Despite the challenges of remote teaching, by the end of first grade, with the help of the educational team my wife and I had assembled at home, our son scored high enough in math and reading on standardized state tests that he qualified for second-grade general education without special education assistance. My wife and I warned the district about the challenges that could develop without additional assistance, particularly socially, because of the time we’d been forced to remain at home. Given that he hadn’t attended school in person on a regular basis since kindergarten, he lacked the social experiences vital to his development. Our district reassured us that he would be given a 1:1 paraprofessional in second grade to assist him and that he’d continue to receive social work, speech, occupational therapy, and special assistance in math and reading. We trusted their expertise.
Second grade began quite well for our son. My wife and I met with our district administrators and staff a month after school started to discuss how well it was going. He was play-acting school at home. His special education teacher, who continued instruction in math and reading, told us he was walking around school “like he owned the place.” His principal thanked us for the way he held doors open for other students. Everyone was delighted. However, shortly after our meeting, the supports written into his IEP quickly began to fall apart. His social worker took an extended leave of absence through October and November, and the district stopped social work altogether, failing to notify us until March. Simultaneously, we learned that his 1:1 paraprofessional resigned, as noted on our district’s website. When my wife questioned his special education teacher about a replacement, she indicated that she was discussing it with his social worker, who, as she testified at our due process hearing a year and a half later, was not attending school at the time. The district special education director, assistant director, and their counsel maintained that his paraprofessional supported him throughout the year until July, but when we later questioned this assertion to the investigator in the context of our state complaint, they admitted she had resigned the previous November, yet were unable to tell us who, exactly, was supporting him.
By February, we received a report from the social worker, who had then returned, that our son had tried to run from the school grounds 17 times over the past few weeks.
Why wouldn’t they tell us this sooner, we wondered. Why let it go to 17 before contacting us at all, letting it get so out of hand? No matter how politely or how often my wife and I reached out to our son’s teachers and administrators, we were unable to get a clear answer as to what was happening at school. While his special education teacher confided in us that he had no paraprofessional, his social worker and district officials insisted he did. No one answered our questions about his social worker’s earlier disappearance. Our district’s counsel was later incredulous: Most people get sick, she said while questioning my wife in our due process hearing. My wife responded that most people get a sub. In January and February, the special education teacher took two leaves of absence, one time for COVID and another for the death of a family member, which we learned from the social worker in a telephone call. Further, the social worker’s return to school didn’t mark the beginning of a trusting relationship, as we’d agreed was essential for our son’s development. It marked the beginning of over a year of seclusion, restraint, ineffective rewards programs, point-based behavior systems, and isolation for our son, as well as a year of deception and hostility toward my wife and me for trying to help them teach him successfully.
In a message to district administrators and colleagues in March of his second-grade year, I inquired about his aide support, and the school social worker expressed concern to her colleagues that my wife and I would begin to escalate our son’s situation because his IEP had “not been compliant” for four months, while in the same figurative breath replied to me that as far as she knew, he was supported by his aide. When I directly asked her in a meeting later that month what the aide could be doing differently that had suddenly caused eloping behaviors and fight or flight instincts, knowing the aide was not by his side, her response was that she didn’t know – not that his aide was no longer employed at the school. She sent a subsequent message to the director of special education, assistant director of special education, and the rest of his education team, indicating that none of them were responding to her pleas for help and that she felt uncomfortable lying to us after the assistant director asserted he was unaware of a lack of a paraprofessional. He responded that it was the special education teacher’s responsibility to find a replacement aide.
Because of our son’s increased eloping behaviors that we’d never seen before and his fight or flight responses, along with what seemed to us to be systemic confusion and dishonesty from our district to address our concerns, my wife and I hired an advocate to help navigate the situation to get his education back on track, since we weren’t familiar with special education laws or what teachers were required to do. It seemed to us that a simple acknowledgment of the district’s failure to effectively implement his IEP and a correction of those shortcomings were the answers, particularly given his success when his IEP was being followed at the beginning of the school year. Give him social work again, and let his relationship with the social worker develop positively. Give him a 1:1 aide as it was written in the IEP, and things would return to normal.
Instead, hiring an advocate seemed to throw gasoline onto a school district already immersed in the flames of apathy and lack of accountability.
They became very hostile toward my wife, myself, and our advocate. At the same time, our son’s education continued to flounder, as he was left unsupported, scared, fell further behind in his studies, and began mimicking the behaviors of his non-autistic peers, getting him into more trouble. During meetings in which we pleaded with the district to help him, providing well-supported, researched options to communicate with him that worked at home, they continued to deny any loss of support of his IEP and resorted to baseless screaming: “I don’t have to listen to you, I have a Ph.D. in psychology!” our director of special education services yelled at us; “I’m not going to listen to any of this, I know everything about the law!”; “I went to the number one college in the country! I went to the University of Wisconsin at Madison!” and “Consulting with a BCBA is not happening!” our district’s assistant director of special education yelled. As our district special education administrator would testify over a year later, she was not even aware of our son’s struggles, despite messages written to her from teachers describing his behaviors and their correlation with his lack of IEP support. She became involved only when she heard we hired an advocate.
Our advocate suffered greatly at the hands of our district. When she initiated an FBA and BIP herself and guided our district through them, they confided in each other that carrying them out would be easy because she was a BCBA, as they had no accredited BCBAs on staff – they could simply follow her lead. They later testified that they initiated the FBA and BIP and that she, in fact, made them feel uncomfortable and threatened them, despite the opposite – the assistant director of administration’s tirade in one of our IEP meetings in which he yelled at her about her supposed lack of qualifications, despite her BCBA accreditation. They brought in their school psychologist, who doubted our son’s autism diagnosis from his neuropsychologist, insisting he had ADHD instead, despite our own specialist having tested him for ADHD and concluding he did not. Their behavior specialist, a graduate of a college in West Virginia in her 20s with no BCBA accreditation, disagreed with our neuropsychologist reports, a graduate of King’s College London with decades of clinical experience in pediatric neuropsychology, and refused to consider her recommendations. After her resignation a year later, their new behavior specialist, who never spoke to our son and of whom our son was unaware, assessed him under oath as an “empty shell” without ever making contact with him, and the district’s counsel asserted in our hearing that her assessment was the most accurate.
While my wife is a secondary education teacher in a different high school district with over 20 years of experience, and I’m a former lecturer at one of the highest-rated public universities in the country with parallel experience teaching in a correctional facility, we did not understand the complexities of IEPs or parent and children’s rights at the elementary school level and did not understand how few rights neurodivergent children and their parents have. We learned from our son that the school’s social worker and unaccredited behavior specialist were regularly restraining him, isolating him, and making him write down the ways he was bad but not recording it, as required by law. Only after we hired an advocate and two months passed did they keep a formal record of his restraint and isolation. If our son became dysregulated, the behavior specialist would evacuate the other children from his classroom and tell him they were all going to recess without him, which would make him even more dysregulated. Taking such actions against a child because he doesn’t understand what’s happening is like restraining and secluding a child paralyzed from the waist down until he learns to walk. Because behaviors don’t appear out of thin air, we inquired time and again about the antecedents predicting his behaviors and were given no information, making our efforts to identify the cause of his behaviors impossible other than through his accounts to us. Worse, his social worker, behavior specialist, and assistant director of special education took a stance that it must be “something going on at home” and behaved as if our inquiries were personal affronts or that we blamed them when we just wanted to know what was happening leading up to his dysregulation so we could help him and his teachers. As we became increasingly concerned about the overt hostility we faced – hostility I’d never experienced in my life – my wife and I began to explore other educational options. We contacted a nearby Waldorf school, but because the second grade was nearing the end and he had yet to be taught to read or write, he was too far behind to attend. We contacted local and regional therapeutic day schools, but they considered him too advanced to be admitted. We contacted schools that specialized in neurodivergent children, but they had no space for him. We had no choice but to move forward with our complaint to the state board of education and, eventually, our due process complaint, simply to keep him in school.
As he continued to share more and more with my wife and I, we learned that the school social worker and behavior specialist were “twisting [his] arms behind his back until they hurt so bad,” “hitting [him] in the face,” taking recess away from him, and shutting him in a room, not releasing him until he had properly described all of the ways he was a bad student, it was clear their actions toward him were becoming detrimental – he was not only not advancing, he was learning that he was “stupid,” his “brain is wrong,” and “the only way to fix it is to die.” We expressed our concerns in IEP meetings, offering to help them consult with a BCBA, and their response was to yell, “It’s not happening!” Our request for a BCBA was denied in our IEP. We again requested BCBA consultation during our due process mediation the next fall, but it was denied because it would be “a direct conflict of interest with the district’s BCBA,” according to their counsel. We requested that the district’s BCBA meet our son, knowing that person did not exist, and their response was, “We don’t have a BCBA.” While state laws recommend school districts “consider” BCBA support, employing a BCBA is not required, and our district maintained that, among others, their special education teacher was a specialist in autism, despite her later testimony under oath that she had no training in autism and for a long time disbelieved our son was autistic at all.
With seemingly nowhere to turn, the district offered us a specialized program for students designated as “problems” in a different school within the district on the same day they formally implemented our son’s BIP: a program in which students would track and report their behaviors every thirty minutes in order to pass a complex system of points and levels to earn the “privileges” of using the restroom, participating in recess, and attending general education classes. After a series of publications in the Chicago Tribune exposed the dangers of isolation rooms, laws were revised to reduce the use of isolation as a means of support. However, this reduction resulted in an increase in point- and level-based behavior programs such as our district’s, which experts have deemed to be counterproductive in educating neurodivergent children, with no evidence to support their effectiveness. These programs threaten to put children in the most restrictive educational settings, potentially violate the IDEA, and are discriminatory against children with disabilities and minorities. Rather than fostering positive relationships with children, they focus on behavior problems and are punitive in nature, bringing the child down rather than boosting the child up. They fail to take into account the need for individualization, they fail to recognize behavior triggers, shame students, and require children to use the part of their brain that is inaccessible during dysregulating behaviors.
Yet, in our desperation, and despite repeatedly expressing our concerns with our district administrators, my wife and I were willing to allow him to attend the program as long as he could have recess because we knew taking away his recess would be detrimental; he would not understand the punishment, and he would likely be dysregulated every day to the point of never being allowed access to recess. They refused. They offered to transfer his sister to the same school and claimed that we were not collaborative because we did not agree to transfer her. “Go ahead and file your little complaint,” we were mockingly told in an IEP meeting by the director of the behavior program, so with seemingly no other option, with our advocate’s help, we filed our complaint with our state’s board of education regarding the portions of his IEP which had not been fulfilled, his physical abuse, and our disagreement with his placement into a point and level based program, in the hope we could affect change in his education through the law. Unfortunately, as second grade ended and third grade approached, multiple requests for extensions on behalf of the district and the state investigator jeopardized his entrance into third grade entirely. We hired a lawyer, who filed a due process complaint with a stay-put order, and our son was granted access to third grade three weeks into the school year because of our disagreement with our district about his placement in their behavior-based program and his inability to access the necessary minutes of education required by his IEP while in that program. While our district’s special education director acknowledged to her staff that we would likely win our stay-put order, she sent a message telling staff and administrators before the first day of school that under no circumstance should they allow our son into the building if we tried to bring him, as if we would force him into a space that had exhibited such a degree of hostility toward having him there without being required by law.
Once he was granted a stay-put order, we had faith his teachers would finally acknowledge that they would simply need to fulfill the IEP like they should have in second grade and teach him. But this wasn’t so: instead, they did as little as legally possible under his IEP and undermined it time and again. While they gave him a 1:1 paraprofessional, she was admittedly not trained by their behavior specialist. She prompted him too often, and the district never discussed it with us, making no effort to correct over-prompting for the entirety of his third-grade year and only revealing as much during our due process hearing in May. Though his lack of a paraprofessional in second-grade gym created a strong aversion to competitive games, and though we met with his teachers before entering third grade to suggest that he be provided an alternative role in competitive games to alleviate his anxiety, the very first thing they did on his first day back was to place him in a competitive game where he became dysregulated. The school social worker was only able to teach through competitive games and refused to try any other approach, guaranteeing her failure to connect with him. Time and again, she misconstrued our suggestion of alternative roles in competitive games as “no games at all” and blamed my wife and I for her lack of success, despite attending staff meetings with us in which his third-grade teacher openly discussed the successes she had in utilizing alternative roles in competitive games with him. In fact, she would interrupt his third-grade teacher’s positive stories to complain about her lack of success and openly complain about my wife and me. She would write long reports about everything our son did wrong, sign her name, and when we’d try to discuss the reports with her, tell us that his third-grade teacher wrote them. She posted comments on social media complaining about parents and other teachers, complaining about how hard the pandemic was on her, and joking about making people relive the worst day of their lives and making children cry while she watched. She fabricated a story in which I sat him down and told him she hated him, which never happened. She was unwilling to begin his goals until the month they were due, so she could testify that she was unable to make progress with him. She refused to validate anyone’s feelings. We bought her the book Declarative Language in an attempt to help her connect with him, but she refused to take it, reasoning that she was already an expert, highly educated, and didn’t need any help, while simultaneously asserting in front of her colleagues that not only did she accept our gift, she’d read it, and that we were confused by the “system.” Yet, at the same time, she made requests on social media for the general public to buy her supplies and give her teaching ideas to help her.
Sadly, aside from acknowledging the failure to provide social work in his second-grade year and requiring our district to provide compensative services in the form of five-minute iPad videos about how to be nice, the state investigator punted the majority of our complaint to our due process hearing officer, or made recommendations that our district consider certain reforms, which they didn’t undertake – it’s doubtful they even considered them. Amazingly, our son’s behaviors subsided in third grade with a supportive, collaborative general education teacher, a new medication regimen, and his own determination to remain in school despite his newfound anxiety about being thrown out of school at any moment. “My friend told me the kids at (the other school) are even meaner than the kids at (current school),” he confided to me late one night when he was unable to sleep. Yet our district’s counsel claimed in our due process hearing that he had no friends. The only reason he was successful in school, they claimed, was that his teachers refused to give him any schoolwork at all. Time and again throughout the year, we would receive positive reports from his third-grade teacher and negative reports from the district’s lawyers, claiming that the same reports we saw were showing them that he was making no progress, and any time he was given any academic task he was having a meltdown. I began to understand that even if we won our due process hearing, we would still need to find another school for him, but we stood by the due process complaint in the hope of retaining our finances, thinking we would win because of the hundreds of pages of written evidence we’d obtained in our records request which favored our case, and be able to move our family out of the district to a new school.
Given that our district’s reasoning for transferring him to a behavior program was no longer relevant due to his lack of behaviors, they created other reasons for him to leave: over-prompting was one. Another, as testimony provided by our district special education administrator revealed, was that after five hours of observation at school with no interaction, she believed his facial expression had no affect, that he looked sad, and therefore needed to leave. No consideration was given to his fear that the social worker could once again “twist [his] arms behind [his] back until he hurt so bad,” or “hit [him] in the face” if he made a mistake, or that he was scared of being transferred to a different school where he’d been told people were even meaner. And despite sharing that our son had made “adequate progress” on all of his goals on his progress report except for social work, she concluded that the report showed no progress whatsoever. Disparagingly, testimony from his third-grade teacher revealed that, despite his positive report cards and the positive experience we had collaborating with her, the grades she gives students are based on no data whatsoever other than how she feels on the day she gives grades and, therefore, illustrated no basis for success.
As the due process hearing approached, and despite another year of conflict with our district, we appeared poised to win – how can a child be placed in a program to correct behaviors when he has no behaviors?
Our hearing officer appeared to agree, and it looked as if my wife and I had successfully advocated for our son. But in their closing statement, despite insisting for fifteen months that their behavior program was the only place for our son, they rescinded the offer, instead deciding that paying for him to go out of district entirely was the only option because my wife and I were “hateful, hurtful, and ignorant” and our son was an “expressionless, non-functional shell of a boy with no friends, no hope and no future.” After making her decision in a fraction of the time legally allotted, ignoring his physical abuse by the district entirely, ignoring the testimony from his neuropsychologist and our BCBA, and acknowledging she did not review the evidence or hearing transcript before her decision, our hearing officer agreed. Our son would no longer be allowed to attend public school in his home district.
It’s difficult to put into words what lessons I learned from the experience. On the one hand, it reinforced what I was taught as a child: that being different singles you out for punishment and ridicule simply for existing, even though being different feels like its own punishment. You yearn to fit in until you realize you never will, and you can either embrace your individuality, mask and avoid your individuality, or a combination of both, as I’d done throughout my life. But I don’t want to teach my son what I learned about myself, and I want him to live a better life than me, feel confident about who he is, and not fear his own individualism.
One of my saddest memories of those years came during a period when my son was in second grade when I still trusted our district and his teachers but shouldn’t have. I naively believed we were all working together to share as much information as possible because we wanted to identify what could be causing his behaviors, and we all wanted to help him. I was routinely challenged in getting him ready for school in the morning and getting him to the school bus. He would fight me in going and become dysregulated, and I had no idea why. I repeated to him time and again that his teachers cared about him and wanted to help him, when in fact, they didn’t; they knew exactly why he was dysregulated about going to school and why he was dysregulated at school: he wasn’t being supported. One morning, during an episode in which he both fought and ran from me, I shut him in the basement to calm him down for a few minutes and stop crying. It sounds worse than it is – the basement is partially finished and a place where we spend time; it’s not a bad place. But I shared this detail with his special education teacher and principal, telling them I didn’t understand why he was acting this way, and they provided no response whatsoever. The school’s lawyers repeated this incident time after time as a reason why I was a bad father and why he shouldn’t be in school, when in fact, he was scared to go, he was unsupported there, he felt alone and helpless, he was being isolated and didn’t know what else to do, and I wasn’t aware of any of it. He was merely reacting as anyone would react in a situation in which they felt threatened. I was actively hurting my relationship with him, desperate to find help, find answers, and reach out to his special education teacher and principal for guidance, and though they knew exactly why my son was afraid to go to school and chose to do absolutely nothing. They chose to sit by and watch a father damage his relationship with his son instead. By not responding with critical information regarding the cause of his fear of school, they failed not only to help him but also actively hurt what was a loving, trusting environment at home simply by not caring to do anything at all.
I felt so terrible in the years afterward thinking about how I’d misunderstood my son due to the apathy of his schoolteachers and administrators. My mental and physical health began to deteriorate, and he became afraid I might die. I apologized to him repeatedly and tried to reassure him. Telling an eight-year-old child that people actively hurting him is simply a fact of life should never happen, nor is scaring a child into thinking you could die simply because of the effect others’ actions have had on your own anxiety. I’ve spent the time since rebuilding our relationship to the point where he once again engages me in play, talks to me, and loves me like he did before entering elementary school. But the apathy of engaging with neurodiverse children is a systemic shame of our public schools. How can one really affect change in thought if the laws simply state that they recommend districts consider alternatives rather than requiring them to enact alternatives to their current methods? This approach only works if people at the hands-on level care to do so. For a district of teachers and administrators with police records ranging from battery to DUI, it’s unlikely they would ever consider change. Further, public apathy from parents of non-disabled children needs to change. People who say they support inclusion while in the same sentence claim, “it’s bad everywhere,” and that you just have to accept your son will be physically and emotionally abused wherever you live are just as apathetic. What if this happened to their own children? Would they be so contrite? Would they agree that they and their own children just need to accept abuse? The past decades have seen so much dialogue about the equality of everyone regardless of gender, race, and sexual preference, but when will the dialogue about neurodiverse children or children with disabilities finally extend beyond only their families who love them and would do anything for them?
