[Note: certain names in the text below have been changed.]
Last month I was browsing the web when I came across a post on Gawker entitled, "Shockingly Hateful Letter Targets Family with Autistic Teen." I found the story of interest because a similar series of events transpired involving my own brother in 2011, but backwards: instead of considering charges against our neighbors, our neighbors rallied to file charges against my brother. In all, it made the author of the letter suggesting euthanization of the mentally ill, described in the post, seem tame. The City of Shaker Heights effectively put my parents on trial for the supposed crime of having an autistic son while it denied that it was doing any such thing, and summarily found them guilty.
My family moved to the suburban paradise of Shaker Heights, Ohio in 1986 when I was three years old and my younger brother, Simon, was one. If you had met my family then, you might have noticed that I liked tape recorders and record players, while Simon lacked the muscle tone to even sit up straight. For the first decade of his life, my parents tried to figure out what was wrong with him, and he began accumulating labels from professionals such as "developmentally delayed," "learning disabled," to say nothing of the hardly descriptive "Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)". I was told to be nice to my brother because he had a hard time doing things, and though I didn't always comply (we were still brothers), I tried.
Simon's childhood was not the idyllic dreamscape that most parents imagine when they are told that their children will benefit from individualized instruction in one of the best and most diverse public school systems in the country. He repeated kindergarten. He spoke with a lisp that in his earliest years even my parents could not understand, which I eventually realized was largely because he had trouble hearing after suffering recurring ear infections that eventually required surgery. He exhibited repetitive behaviors, such as singing the same line from one of my children's records on infinite loop. For a first grade drawing exercise in a book his teachers had to pen for him called "Simon Likes," he represented "pizza" with three strokes of purple crayon that connected to form a triangle—the most basic visual representation of a slice of pizza possible, exhibiting no creativity at all. The other drawings, including a square school bus and vastly disproportionate stick figures, looked amiss even for a young child's drawings.
Sometime in the mid-1990s—it's difficult to remember exactly when—our family had an epiphany when we realized that Simon exhibited many, but not all, of the classic attributes associated with an increasingly-talked-about disorder called autism. My own previous encounters with an autistic classmate from Japan, when I was in second grade, proved to be a red herring, as Simon seemed too different to possibly suffer from the same disorder. Unlike my classmate, Simon could talk in complete, albeit simple, sentences, but his behavior was increasingly difficult to control.
My parents, and especially my mother, tried everything. Simon went to a neighboring school district in fourth grade, where the teachers wanted him on Ritalin. He went to a special high school in a neighboring state, surrounded by two hours of corn fields on all sides (in Carbondale, Illinois), and managed, just barely, to earn a high school diploma. By then he was on an anti-schizophrenic drug called Seroquel, which eventually caused significant weight gain and put him at risk for diabetes.
And then there was nothing for him, except more drugs with horrific side effects, none of which were discovered, let alone engineered, to actually treat whatever neurological disorder Simon had. Autism is thought of as a childhood disease. In reality, it is neither restricted in any way to childhood, nor is it a single specific disease (which is what had thrown me off in second grade). So, with no meaningful social services or treatment options, Simon returned to Shaker Heights, Ohio to live with my parents while they tried to figure out what to do.
What makes Simon different from the classic notion of "autism" is that he does not live in his own asocial bubble where he rocks back and forth and talks to himself. In fact, more than just about anything, he craves friends to talk to. (He had made friends with some limited success; in Illinois, one of his best friends died when she tragically fell off a cliff at a school activity.) Simon loves to talk about sports, and especially Cleveland sports teams. He has watched so many sports games on television, which he repeatedly emulates in every way he can, that he has actually developed a fairly convincing announcer voice that remarkably cuts through his otherwise apparent speech impediment. He managed to hold jobs working for the Cleveland Indians, Cavaliers and Browns Stadium, which compared to others with his diagnosis makes him seem remarkably high-functioning.
On the other hand, Simon is not your typical high-functioning individual with Asperger Syndrome, either. Though he has an affinity for calendars and an excellent memory, he is not a savant. He hasn't written any bestsellers. He hasn't improved factory automation for any industries, or inspired any Lifetime specials. One can tell immediately by looking at him that he is disabled. He struggles with abstract concepts, such as what makes a meal "expensive"—but he's always up for a game of catch. This combination of traits, aside from being unique, is in its own way a deadly combination, because Simon knows he is disabled, wants to be "smart," and effectively refuses to accept that he should be confined to associating with only disabled people for the rest of his life.
That's why Simon started calling students with whom he had attended the third grade, out of an old directory sitting around our house. And fourth grade, fifth grade, sixth grade, and so on. In any community, it's understandably difficult to find children who would prefer to socialize with someone like Simon, versus someone without his disabilities and peculiarities. It's also understandable, to a certain extent, that many people are not educated about mental illness and are scared when someone whose existence they have utterly forgotten calls out of the blue, sounding strange and wanting to talk.
Simon did not have much success making friends by cold calling his former peers, now many years since their last contact with him, and he did not understand why. Yet occasionally, he surprised us by exhibiting insight in other ways. When my parents blocked outgoing calls from our main phone number—a major decision for any household—Simon pressed "0" to call the operator, told her that the phones weren't working, and asked her to complete the call for him. The operator happily complied. Having lost that battle, we unblocked the phones.
Still, the tide of rejection continued to swell, and Simon's way of coping was simple: he would scream. Many times each week, he would go outside ignoring the direct prohibitions, warnings and pleadings of my parents (and, when I was home, myself), and cry at the top of his lungs, occasionally banging a snow shovel on the driveway for good measure. There is no question that his wailing was loud. It was painful for us to listen to, not just because of the volume alone, but because it's excruciating to hear someone you love express such deep unhappiness at being rejected by the world.
We knew right away that our neighbors would not be pleased, and they weren't. We tried to make Simon understand that he was not the only person in the universe, but he had no idea what we were talking about. Once, our next-door neighbor at the time came outside to attempt to talk to Simon. I happened to be there and knew immediately that our neighbor's attempts to calm Simon down would only make matters worse. His tone was sharp, impatient and belittling. Simon wanted to be talked to, and listened to, like any normal person; he was (and remains) hypersensitive to slights—understandably so, having been slighted for his entire life. So he reacted accordingly, by running away. It took us several hours to find him in the darkness among the trees and calm him down.
This process repeated itself for months, though usually without any direct intervention from anyone but my parents. Eventually, our neighbors across the street, who had known Simon and our family for many years, began calling the Shaker Heights Police Department. The police, considered "trained" in handling individuals with mental illness because they watched a 40-minute videotape, usually expressed some baseline level of sympathy and tried to talk to Simon, who had no concept of their mission, let alone the law, but occasionally they took a different approach insinuating that my parents were at fault. One particular officer suggested we move out of Shaker Heights, echoing a recommendation several years before from the city prosecutor. Frequently, different officers would be on duty when the neighbors called, and so no one had the ability to build a rapport with Simon. One night, they drew their guns and took him away in handcuffs. He was disposed of in a local hospital emergency room. In another instance, the police served as a conduit to a psychiatric ward's isolation room—the exact opposite of what Simon truly wanted—and then discharged him the following morning along with immense hospital bills. This process also repeated itself, and completely eroded whatever trust and tolerance Simon might have once had for the police, turning them instead into a trigger point for his agitation, and beginning the vicious cycle anew. While a former police chief accused my parents of "taunting" Simon based on Simon finding a letter from the City that my mother had hidden, efforts to inform the new police chief of the complexity of the situation were ignored.
If Simon and I share one set of genes as brothers, it is definitely whatever set informs a person's sense of justice. While I've found many instances of injustice throughout the world, Simon has arguably directly encountered many more. And while I could be thought of as overly idealistic by having (extremely limited) faith in the ability of courts to level the playing field in business, Simon's corresponding fault is an expectation that when someone harms you, that person should apologize. The notion that someone would not apologize, to him, simply meant that one should demand an apology that much more forcefully. So Simon started calling the neighbors, asking them to apologize for how they had behaved by calling the police.
Here, we couldn't really argue with his reasoning (although we still strongly discouraged him). Robert and Gretta Rooney—both divorce lawyers, now divorced, but who continue to work together at Rooney & Rooney Co. L.P.A. where they help their clients get divorced—lived across the street, and had prohibited Simon from talking to their younger daughter, with whom he had once played as a small child, on the implied grounds that someone with his condition might rape her. Yet Simon had never been accused of assaulting anyone in the neighborhood or in Shaker Heights.
The Rooneys responded in a manner that Simon, and all of us, found confusing. They, or their daughters, sent a series of unsigned notes, some of which actually did seem to apologize for their behavior. One read, "Dear Simon, I'm sorry we have been treating you bad. You really are a good kid. Please accept my apology in the way I have been acting towards you. You are a super kid! We still [heart] love! Love, Your Neighbor." Yet other notes threatened, "If we are disturbed by your yelling outside we will call the police," and "We will use every remedy available to be left in peace. We will be sad about it, but we will do it. Robert and Gretta Rooney."
Two doors down from the Rooneys, Sam and Ilene Kleinfeld, whose children Simon and I had known all throughout our childhood, were similarly heartless. In her and her husband's opinion, Simon had crossed the line when his State of Ohio "provider" (in-home caretaker) had been late, and my parents had gone to a movie where they turned off their cell phones after they had checked to ensure that Simon was calm. On his own, while waiting for his provider, Simon had crossed the street and knocked on the Kleinfelds' door to ask if he had left something at their house. Unbeknownst to Simon, the Kleinfelds were holding a party at their home for the cardiology divison, in which Sam worked. At first, Ilene offered Simon a cookie, but Simon wanted to know if he had left anything behind. Surrounded by doctors and their spouses, and frustrated with Simon's inadvertent disruption of his hosting duties, Sam Kleinfeld threatened to call the police, which was plenty enough to enrage Simon. My parents arrived back to find Simon beyond furious.
Some time later, the problem was exacerbated when Simon wanted to apologize by leaving a note at the Kleinfelds' house. After he put a note in their mailbox, he had to go back to check to make sure that he hadn't left anything behind. Again. And again. At which point Sam showed up, and threatened Simon and my father with, "Get off my property or I'll call the police."
The Vesseys next door, who built a fence in our back yard to separate our houses, eventually moved. Their replacements extended the fence and added tall bushes, even though by this point my parents had long since moved Simon out of Ohio.
The Adelbergs, two doors down from us in the other direction, whose children I had carpooled to school with, were not exactly supportive, and were friends with the Kleinfelds and Rooneys besides. Zachary Adelberg, also a practicing lawyer, once told my father, as he was raking his leaves, that life had handed him a "shit sandwich," which he later denied under oath. He occasionally would yell "shut up" at Simon when Simon was screaming, which was guaranteed to have the opposite effect.
Fortunately, other family friends in Shaker Heights and nearby suburbs were far more supportive. My parents were able to solicit over twenty letters in support of Simon from various friends. And our neighbors directly across the street, one of three African-American families on the block, for whatever reason did not share their neighbors' views that Simon should be punished for his actions.
Everything came to a head in 2010 when (according to one officer) with the encouragement of the police, the Rooneys, Kleinfelds and Adelbergs prevailed upon the City of Shaker Heights to file serial criminal charges against Simon, even though they knew that he was autistic, and even though they had known him since he was a toddler. The City Attorney, William Gruber, did not hesitate, filing disorderly conduct charges twenty times—conduct which included his calling the neighbors to ask them to apologize for calling the police. Since Simon was not trying to harm anyone, he did not understand that his behavior was in any way wrong, perhaps accounting for his belief that some neighbors should apologize. To this day and completely contrary to the claims of William Gruber and his Shaker Heights Law Department colleagues, Simon did not understand the charges against him.
Both times, my parents hired a lawyer to represent Simon, and ultimately succeeded in having both sets of charges dismissed, but not before a transcribed Shaker Heights Appeals Board hearing on April 6, 2011, which put the shameful intolerance and bigotry of our diversity-touting community on full display. By the date of the hearing, Simon had been exiled from his home in Ohio for over six months. (At the time this is being written, Simon has not been home for almost three years.)
City Attorney Gruber, who was almost enthusiastic about his role pursuing a young adult with autism, served multiple roles during the hearing. As City Attorney, he examined and cross-examined witnesses, and also served as Secretary and Chief Counsel for the Appeals Board itself, and he ran the hearing. As one of the Board members remarked, "We do not strictly follow the Ohio Rules of Evidence." For example, City Attorney Gruber instructed the Board not to read the written evidence my father submitted in advance (which he submitted in advance because he did not think it was likely that appeals board members could not digest all of the materials in the course of the hearing while listening to testimony).
The main point of the hearing was that my parents did not believe that as taxpayers in good standing they should be liable for what the City of Shaker Heights deemed "police response costs," amounting to about $6,500 for failure to abate a nuisance. As City Attorney Gruber himself stated on the record, "The Appellants have not been accused of committing any crime. The charges billed to them by the police are not fines. They are actual costs incurred by the police in having to respond multiple times over a period of a few months to nuisance criminal activities at their property, that is noise, disorderly conduct and telephone harassment." The only problem with this statement was that it was false. The police had not actually run up any extra costs of any kind. Nor had they submitted any evidence to support their contention that Simon's actions prevented them from responding to other issues in Shaker Heights. Even if they had, it would be the first time that a [supposed] criminal's family was assessed charges for the opportunity cost of the police doing their job.
My parents contacted several lawyers in the area to represent them at the hearing. None would take the case, which they perceived as minor, and which obviously did not involve any kind of potentially huge payout. For my parents' part, they did not want to spend the same amount of money as the fees themselves, or likely much more, on a lawyer for a non-court proceeding, so they represented themselves at the hearing. At the outset, my father (incorrectly referred to as "Mr. Greenspan" throughout the hearing, given that he holds M.D. and Ph.D. degrees) pointed out, "I think it is surprising that Mr. Gruber is both presenting the City's case and has an additional official capacity in connection with the Board."
First, my parents called as witnesses several family friends who knew Simon and could vouch for the fact that his ailments were not caused by any action or inaction on my parents' part. My father also pointed out that the drugs routinely prescribed to individuals with autism are basically ineffective, though they do generate huge profits for pharmaceutical companies. He also addressed the role of social interaction in Simon's ailment. "It is my contention that Simon's condition is a result of inborn genetic or developmental errors for which I don't think it is reasonable to blame parents, and the consequence of people not [accepting] him with those limitations which were particularly pronounced when he was very young, as is indicated by the term developmental delay. So [there are] a [series] of congenital problems that have [implications] in terms of his level of social acceptance. These articles make clear that social acceptance is a basic human need. And that in the absence of that there are significant psychological and physiological effects."
City Attorney Gruber interrupted my father and "objected" to his relevant testimony. Since Gruber was running the hearing, there was no nominally impartial judge to appeal to, and since my father was not an attorney, he didn't realize that he could merely note the objection and keep talking about the same issue. Furthermore, my father had asked for the rules of procedure for the hearing, which Mr. Gruber responded to by sending a brief summary of a previous hearing but not the procedures.
The City Attorney called police officer Leonard Westfall as a witness, who explained that we were being charged an arbitrary variable multiplied by the hourly rate of several officers, plus a vehicle fee, and that if we didn't pay, the fees, which were not "fines," would be assessed to our city taxes. My father got to the point during the cross-examination.
|Q:||So let me ask you this: If you hadn't responded to our home, would those two officers or whatever number of officers still been on duty?|
|Q:||So they still would have been paid no matter, whether they responded to our home or not?|
|A:||I believe so, yes.|
|Q:||So in what sense then is that the actual cost to the City for them coming to our home?|
|A:||You'll have to ask somebody above me.|
|Q:||Does that make sense to you?|
|A:||I'm not at liberty to know.|
|Q:||Sure you are.|
|Q:||Sure you are. You're a human being?|
|A:||I'm directed to do —?|
|Q:||I'm not asking about what you're ordered to do. I'm asking does it make sense to you that if the officers would be paid anyway regardless of what house they're at, or what property they're at that it makes no sense to charge, to say that it actually cost the City for that visit is their hourly wage for that time, if they would be paid regardless of whether they had any calls?|
|A:||Sure it makes sense. We're going out for a nuisance. We're going out for something we shouldn't be going out to.|
Officer Westfall finally revealed the City's discriminatory logic: that calls involving mental illness fell outside of the normal job description of police officers. They were, in his words, "something we shouldn't be going out to." This of course begs the question, if it's not the job of the police to work with people like Simon, then whose job is it?
One answer to this question might be the dedicated mental health professionals in government, such as those at the Cuyahoga County Board of Developmental Disabilities (formerly the Cuyahoga County Mental Retardation and Developmental Disabilities Board). That organization threatened to kidnap Simon in 2010, one month after the neighbors began filing criminal charges. A letter, addressed to Simon (who would be unable to comprehend it), arrived in the mail dated July 6, 2010, which stated:
Dear Simon and Family:
Based upon the repeated requests of your mother, Judi Greenspan, your history of behavioral difficulties while residing at home, as well as your more recent behavioral problems since your return to your parents' home from the Northwest Ohio Developmental Center (NODC), the staff of the Cuyahoga County Board of Developmental Disabilities has investigated alternative placement options for you. These options have included, but have not been limited to, your staying at your present home, your leasing an apartment in the community with additional provider services, respite placement at a New Avenues to Independence and a return to NODC while additional research is completed on private facility placements at the Board's expense. At this time, the only option available is for you to return to NODC.
The plan at this point is to spend the next few days preparing you for your return to NODC as the Board continues to search for and plan for a longer-term private facility placement. At 10AM on Friday, July 9, 2010, you are to be picked up at your present home and transported to NODC, while the process of longer-term placement continues.
I hope that you will find this plan to be in your best interest and that you and your family will cooperate in its development and implementation, such that it can be put in place without the necessity of Probate Court involvement. Please have your attorney contact our attorney for any further discussion.
Terrance M. Ryan, PhD
This letter, which completely misconstrued every aspect of my parents' advocacy on Simon's behalf, suggested that if my family did not comply with the Board's "plan" to illegally remove Simon from his home, against his and our will, that the Board would sue in probate court to have him removed on some imaginary, trumped-up basis. Our lawyer did in fact contact the Board, and the Board later apologized for sending the letter.
My family later sought to re-assign Simon's guardianship to my father, so that a similar situation could not possibly transpire again. True to its word, the Board opposed these efforts in Cuyahoga County Probate Court—and so did Margaret Cannon, the then-Law Director of the City of Shaker Heights, suggesting that the City had actually conspired with the Board in its endeavor to take Simon away. Due to the opposition of the County Board, the acquisition of guardianship status cost almost $60,000 in legal fees instead of the $111 it should have cost, given that my father was an engaged parent with steady employment who did his best to care for Simon.
So, unable to have Simon carted away, the City instead decided to settle for its imaginary "actual costs" of routine police work as punishment directed at my parents. The hearing testimony continued with the Shaker Police describing how they had handcuffed Simon on the way to the hospital, knowing that he would be likely to injure his wrists. And then Zachary Adelberg began his testimony.
Mr. Adelberg, who knew exactly how to skew facts and present a particular side of a case thanks to his extensive legal experience, suggested that Simon was single-handedly responsible for the neighborhood's failure to have block parties, which had abated years before Simon's condition was the focus. He argued that my parents had not done enough because they had not physically restrained Simon, which would have put them in grave danger, or called the police, which they had, or taken away his phone, which they had attempted to do, or had him involuntarily committed, which he had been, where he was almost killed. Mr. Adelberg even had the audacity to state, "I was Neil Greenspan," because he had once had a stepbrother (not a son) in a different location (not his home) with a different mental illness (not autism). During cross-examination, our neighbor summed up his position without meaning to: "Be somewhere else."
As for the "shit sandwich" comment, Mr. Adelberg simply lied, stating, "No, I categorically deny it," even though he could remember the surrounding circumstances perfectly well.
Ilene Kleinfeld admitted to having signed five criminal complaints, but that everything was "a bit of a blur." She also recited the history of the ill-fated party from her husband's division who were too busy to assist. "He was not invited. The Greenspans were not invited," she reasoned.
In the end, my parents lost. On May 6, 2011, they were forced to pay $6,531.13 to the City of Shaker Heights for having an autistic son. The City issued a ten-page ruling in which it attempted to prove that Simon's autism was burdensome. My father annotated it with a wide range of inaccuracies and misstatements.
In one narrow sense, the City is right. Like any mental illness, autism can be burdensome. Then again, in an age of policies such as "stop-and-frisk," so is being African-American. Some might say that being overweight is burdensome. The point of welcoming diversity, as I learned in the Shaker Heights City School District, is to imbue tolerance for differences that are beyond the control of individuals. No one chooses to be born with a condition like Simon's, let alone to parent such a child.
At my house in California, my roommates and I often found ourselves awake at 2:00 A.M. while trying to sleep, listening to the shrill intonations of the mockingbird who liked to sit right outside our window. It was loud. It was irritating. It sounded like an infinite car alarm that went on for hours. And there wasn't a whole lot we could do about it, because it was a force of nature beyond our control.
Today, Simon resides out of state. He rarely screams outside because the program that my family found for him—which took years—finally understands his condition and that he rightfully wants to be treated with respect. He has not returned to Ohio once since September 20, 2010.
The fact of the matter is that my parents' efforts (with considerable help from my mother's sister) saved Simon's life several times over. Extremely poor nutrition at a state-run facility caused his cholesterol and triglycerides to spike dangerously. A fellow patient at the same state-run facility, who had killed his mother, might have killed him. Or depression might have caused him to kill himself. If the City and the neighbors had it their way, the "nuisance" would have been "abated" because Simon would be dead or permanently institutionalized—not because they necessarily wished him ill. But he'd still be dead or gone, and we would have a quiet neighborhood. Only my parents pushed to quiet the neighborhood while keeping their son alive, and for that, they were forced to endure a public shaming, pay a fee, and then pay ten times that in legal costs—more than many earn in a full year. And Simon is still gone.
Meanwhile, the Shaker Heights City School District continues to push diversity, and the City of Shaker Heights bills itself as "a great place to live and work."
Maybe that's true, so long as you don't have anyone with mental illness in your family. Otherwise, be careful. You might have to get out your checkbook, and then get out of town.