On Burning Your Maps: A Parent-Caregiver Perspective on Mental Healthcare in the US

Guest Post by Joseph Meyer

Joseph Meyer lives with his family in Austin, Texas. He retired a few years ago as assistant vice president for institutional research after a 32-year career at Texas State University. Due to his experience parenting a child with serious mental illness, and his career in evaluating university policies, he became interested in finding practical ways to improve mental healthcare in the United States by seeking common ground. His family was featured in short documentary films by the Mental Health Channel that aired on PBS. He has presented at state and national NAMI conventions and has advocated for improved mental healthcare policies at meetings of local committees and at legislative hearings in Texas. He is writing a memoir about his parenting experiences and his ideas for finding agreeable solutions to contentious issues in mental healthcare policy based on his family experiences, reading the perspectives of others, and engaging in conversations.

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The Early Days

Driving to visit my mother at her retirement community twenty years ago, I heard an award-winning short story read on NPR’s Selected Shorts. It was “Burn Your Maps” by Robyn Joy Leff, a fictional essay about a boy who seemed to be experiencing delusions and his parents’ efforts to respond in a balanced way. The story was so strikingly like my parenting experience with my son that I thought Leff must have some first-hand experience with psychosis in children. Shaken, I pulled into the parking lot of a convenience store and cried. Here was a fiction writer who understood and described something that was foreign to most people. The title of her essay was an apt description of what it felt like to abandon traditional expectations of my son having a girlfriend, going to college, choosing a career, getting married, and having his own children—burn your maps.

One psychologist described our son as one of the sickest children he had ever seen. As time passed, it became clearer that my expectations were going to be impossible. Regrets about what might have been remain today, more than 20 years later, and the daily caregiving continues. The parents in “Burn Your Maps” don’t know what to do about their son and are faced with mixed opinions between themselves and from experts. Nip their child’s fantasies or delusions in the bud? Respect his imagination? I’ve heard both types of advice in my lived experiences. There are no clear answers. Leff’s story ends with this denouement after their son ran out of the house into the snow, leaving a trail of clothing that led to him shivering naked in the icy cold until his parents caught up to him and wrapped him in a blanket before walking together back to the house:

“When we get to the house, before we separate and rush for the door, for a single moment I almost speak. I almost say, ‘We're home.’  But I cannot tell a lie. I don’t know that we’re home, because it’s as if we don’t belong anyplace on this earth, in any country, or any house, or anywhere, really, but in this ragged circle of wool.”

Interestingly, literary critics on the internet today often interpret that short story as a tale of discord between parents leading to behavioral problems in children. And while I agree that trauma can play a role in mental illness, the story to me was one of serious behavioral problems in children leading to family discord or trauma. Hence, the kind of different perspectives we read in Dr. Aftab’s blogs. What is cause and what is effect?

I knew what strangers thought of my son’s disruptive behavior in restaurants, because I had those same thoughts about misbehaving children in restaurants before I became a parent: Was a child’s misbehavior caused by abusive parenting or permissive parenting? My children would be different, I told myself then. But my son had behavioral issues from an early age—distractibility, hyperactivity, difficulty sleeping. Family members and friends variously suggested that we were too strict or too permissive in our parenting. They had many suggestions for us. We tried dietary changes—less sugar, fewer food dyes, vitamins, fish oil. A psychologist thought our child was on the autism spectrum. We agreed. So we enrolled our son in classes for developing social skills. He ran out the door and into the parking lot each time we took him, refusing to accept the structured activities of those classes.

Diagnosis and Uncertainty

Our son has received numerous diagnoses over the years, starting from a very early age, and his symptoms and response to treatment have not always been typical for these disorders. All this has generated considerable difficulty and uncertainty. He was first diagnosed with ADHD by a child psychologist, which we began to treat medically only after my wife overcame months of my resistance to medication. But his symptoms persisted unabated, and our son began having periods of deep depression by the time he was six years old. We had already taken him to several appointments with a highly regarded child neurologist, who ordered a sleep-deprived EEG that showed some spiking he considered subclinical. He also ordered an MRI. Additional tests and blood work were performed, mostly based on what we told the neurologist, because our child’s behavior was well-controlled at those early appointments. All the test results were normal. Finally, at one appointment, our son showed the kind of extreme hyperactivity we had seen many times. The neurologist suspected bipolar disorder, and referred us to a psychiatrist. We reluctantly saw the psychiatrist, both of us feeling uncomfortable with this possibility. How could a six-year-old have a mental illness? We also continued to see the neurologist, hoping to find an ideal solution that appealed to us. We told doctors that we only wanted to try safe medications. Both the neurologist and psychiatrist recommended Trileptal, which seemed to be considered a panacea at the time. Subsequently, he started to experience hallucinations, and he also started telling us that he was communicating with friends who lived inside the bedroom wall and in other places. How could these symptoms be possible in such a young child?

When he was 7 years old, he was prescribed antipsychotic medications. He did not like the effects of the medications, as he didn’t want to give up what he was experiencing. His continued deterioration resulted in a week-long hospitalization, followed by six weeks of residential treatment. Afterwards, our son seemed more committed to recognizing his delusions and trying to overcome them rather than cultivating them for entertainment, as he had claimed to be doing before. But his symptoms continued, almost on a daily basis, and he gradually spent more time in his alternative world.

Toward Diversity and True Inclusion

Not long after our son’s diagnosis of bipolar disorder with psychotic features, which his psychiatrist now thinks may be schizophrenia, a story aired on National Public Radio’s (NPRs) show “All Things Considered” about transgender children. It once might have seemed ridiculous to me, but my parenting experiences made me listen with an open mind. One set of parents was pursuing conversion therapy, and another pair accepted their daughter’s new gender identity. The father of that latter couple said he took his daughter to a family reunion where a matriarchal aunt said to him in front of others, “I thought you had a son.” He replied that he did, but now she was his daughter. The aunt paused, and other family members listened closely to the aunt’s response: “That must have been very difficult. I’m proud of you.” During the NPR interview, he cried telling this beautiful story of acceptance, and I cried listening to it.

My adult child is now my transgender daughter, having decided a few years ago to identify as female. This was many years after the NPR story, which my daughter never heard. Was I concerned her new identity might be related to psychosis? Of course. I still have such concerns. But her personal hygiene has improved, and she has become more self-sufficient at cooking and housekeeping in her studio apartment. She is obviously happier, too. From here, I will refer to her as my daughter, even though some of what I write about happened when she still identified as male. Her change in gender identity has been another opportunity to burn maps.

My daughter’s response to medications and therapy has aligned poorly with my hopes for a more traditional parenting experience. Although she would be worse without medication, she continues to have psychotic symptoms. She gained more than 100 pounds of weight, and now Semaglutide is helping her lose weight. I have altered my expectations. She is increasingly self-sufficient. Challenging her perceptions of the world is useless and causes conflict. Her reality is different from mine. My daughter names friends and colleagues with various careers in Philadelphia, New York, Miami, and New Orleans who exist only in her mind. She talks of trips to visit them and having them join her for dinner. She tells me that some friends help her make the animated videos she creates on her computer and publishes on YouTube or other media sites. This is how she occupies her time, in between nearly daily visits and long telephone calls with me or my wife.

My daughter's pre-school teacher called my wife after a short documentary film about our child was aired on PBS. She told my wife that our child spoke of hearing whispers and bells in her preschool classroom, but the teacher attributed it to imagination and did not mention it to us. So our daughter’s experiences began quite early. My wife notes that our daughter has never known what it is like to be a mentally well adult and therefore has no previous neurotypical identity to work back toward. That makes some sense to me. And it complicates decisions about how aggressive to be in treatment. If treatment were successful in erasing her experiences, what would remain? To what extent should my daughter adapt to the world, or the world adapt to my daughter?

Most of our daughter’s special education teachers were empathetic, but some were not. Some classmates bullied her, but most ignored her. They did not wish to engage with her as a friend. Are her poor social skills a failure of society to embrace diversity, or a result of symptoms that society is uninterested in accommodating and may never wish to accommodate? Were the isolation and bullying she experienced in school a traumatic cause of mental illness, an effect of the behavioral symptoms of illness, or both? Should we seek treatment or try to change society? Classmates and teachers lost patience with my daughter. As I noted earlier, my pre-parenthood thoughts about misbehaving children in public places were judgmental and callous. My responses to her challenging behaviors as a parent and caregiver are, even today, sometimes unhelpful. I think that is how our society also typically responds to neurodivergent behavior in children and adults. When a behavioral problem happens in a classroom, a teacher calls on a school resource officer in Texas—an armed police officer. And it was in a small room with armed police officers where my wife was called more than once to pick up our child after she threatened to harm herself with a sharp pencil or spoke of suicide. One publication, The Texas Observer, called the way we respond to behavioral issues in Texas the “school to prison pipeline.” There are many opinions and not a lot of common ground in thinking about mental illness and what should be done about it. But I believe our society’s expectations are closely intertwined with religious beliefs, ethics, and laws that have not kept pace with contemporary understandings of behavior. That needs to change.

Persons who are experiencing the behavioral symptoms of psychiatric illnesses deserve a caring and therapeutic response rather than a criminal justice one. I fear that as the mental healthcare pie has grown, those with the most serious mental illnesses are getting a smaller slice, and that some thinking meant to help the majority with less serious mental illnesses is harmful to those with more serious mental illnesses: We concern ourselves with the efficacy of psychiatric medications and side-effects, preserving civil rights, and avoiding stigma, issues that are important to the majority, and ignore the life-and-death concerns of the sickest minority. Iatrogenic harm, civil liberties, and discrimination are valid concerns and important considerations, even to me. But when they lead to ideological beliefs that call medications poisons, refer to psychiatrists as quacks, and reject the need for involuntary care under any circumstances, they are obstacles to finding solutions for the challenges presented by serious mental illnesses. I do not know anyone who thinks medications are always needed or perfect, that they obviate the need for non-medical approaches like therapy, or that involuntary care is the right response to mental illness, except in rare circumstances. In fact, as pointed out by Judith Warner in her book, We’ve Got Issues, the opposite is true: Parent caregivers find medications scary and resist using them until they have exhausted other options; therapy is almost always tried before medication, and involuntary care is rarely appropriate or sought out by parents who abhor the idea that their child may need psychiatric care. I highly recommend Warner’s book as a counterbalance to popular books that paint an unduly negative picture of psychiatric treatments.

It seems as if, unlike neuroscientists or astrophysicists, anyone can have an opinion about mental illness and write about it, as I am doing here. Some sociologists say that mental illnesses are what our society defines them to be. But couldn’t the same be said of hypertension and diabetes, which exist on a continuum of blood pressure and blood sugar measurements? Some psychologists, social workers, anthropologists, journalists, and others may believe that mental illness is largely or entirely a psychosocial issue. But their standards of evidence are often weak. Some blame parents, such as the president of a local support association for patients, who said during a conference presentation that she hoped this would be the last generation of children put on dangerous psychotropic drugs because parents were too lazy to do the hard work of raising them properly. Advocates pick up on these views and conclude that society is the problem, and that society must adapt to people with mental illness. But as a parent who sees how society reacts to my adult child, I do not see that as a realistic goal.

As a parent who was spit on many times by my child, I was disappointed to hear an assistant police chief say he was open to diversion but that suspects in a mental health crisis would likely be taken to jail if they spit on a police officer. I was disappointed to hear a lead person of an EMT team say that he did not know why he was invited to a meeting about mental health policy because his job was responding to medical emergencies. I was disappointed to hear an ER physician at the same meeting say that it would help if police took people who were drunk directly to jail instead of taking them to the ER. These attitudes have contributed to the U.S. having the highest incarceration rate in the world and an overrepresentation of persons with mental illness in the justice system. What are parents to do?

Advocates pick up on these views and conclude that society is the problem, and that society must adapt to people with mental illness. But as a parent who sees how society reacts to my adult child, I do not see that as a realistic goal… The over-representation of persons with mental illness among the homeless, those incarcerated, and those killed in interactions with police officers is not an encouraging sign that public attitudes and first-responders are patient and empathetic toward those with serious mental illness.

The over-representation of persons with mental illness among the homeless, those incarcerated, and those killed in interactions with police officers is not an encouraging sign that public attitudes and first-responders are patient and empathetic toward those with serious mental illness. Our society still executes persons with serious mental illness, and perhaps the popular rhetoric that claims persons with mental illness are no more dangerous than anyone else contributes to it—they are often held responsible for their actions and are rarely found to have reduced culpability. The U.S. Supreme Court decided that those under 18 years old at the time of a crime may not be executed, but those with serious mental illness can be.

One of the biggest worries of many parent caregivers for children with serious mental illnesses is what will happen to them when they are not around to protect them. My wife and I often felt like unwelcome pieces of the open adoption triad of adoptive parents, birth mothers, and adoptees when we were waiting to adopt our children. Now we feel like unwelcome members of the mental health stakeholders represented by clinicians, civil rights advocates, and peers who suspect us of contributing in some way to our child’s illness. We are suspected to be part of the problem rather than part of the solution. Our long years as caregivers and the sacrifices of time, careers, and money to take care of children for the rest of our lives go unappreciated. Would my wife have given up a rewarding and lucrative professional career, halving our family income, if she was too lazy to do the hard work of parenting? It would be nice for parents to enjoy a presumption of innocence in the absence of evidence that we have abused our children.

Cooperation or Conflict?

We need a kinder, humbler, and non-judgmental approach to mental illness. Here are some acts of kindness that I will not forget: A stranger put her hand on my shoulder after I had a difficult day in the grocery store and said, “I saw what happened, and you should be proud of yourself for simply bringing your child with you to the grocery store,” while I tearfully loaded my purchases into the trunk of my car. A local restaurant manager put my wife at ease on a difficult day in public by saying, “I wish that I could hire your child who has so much energy!” And a lead psychiatrist honestly told us at the end of our child’s residential treatment for six weeks, “we work for the best control of symptoms we can achieve, but awakenings are rare,” which gave us permission and confidence to stick with a treatment for a while rather than constantly looking for a new and elusive miraculous cure.

Can we address the worries of parents about those with serious mental illnesses without offending those in recovery? Many in the peer and recovery movements would rather not acknowledge the unfortunate intersection of mental illness and criminal justice because it is stigmatizing (i.e., shameful). So higher-functioning members of the mental healthcare community are often among the least accommodating stakeholders. The “medical model” has become a pejorative among many of them. Persons being treated for mental illness are “consumers” rather than patients, a purportedly more empowering position. And if they had bad experiences, perhaps they are “survivors.” One who has failed to achieve a level of functioning is somewhat of an outsider and unfavored in the recovery movement; maybe they are not trying hard enough. Those in prison are ignored at best by those who have never lost control of their own behaviors, saying those with mental illness are more likely to be victims of crime than perpetrators. But such rhetoric may contribute to putting persons with serious mental illness in prison and even on death row. If concerns about stigma require us to take the view that crime and violence are always unrelated to serious mental illnesses, then the implication is that persons with such illnesses are fully culpable for their actions. The dominance of the stigma narrative in meetings of a county committee has led to discussions that focus narrowly on respecting civil liberties—discussions that are largely led by judges, attorneys, police officers, and peers. There are typically only 1-2 clinicians and parent caregivers who are present at those policy discussions. The floridly psychotic and homeless are unrepresented and undiscussed, although they are the ones more likely to have unfortunate encounters with the justice system.

Often feeling ignored at policy meetings, I have reminded the leaders of committees purportedly committed to reducing the interaction of those with mental illness and the justice system that it is those with unstable psychotic disorders who are at the greatest risk and who are absent from the room. Helping them should be a priority, but those focused on the mental health needs of the majority with less serious symptoms are mostly silent in their reaction to my words. They are judges, attorneys, or other legal professionals with a tendency to look at things through legal and psychosocial lenses.

I have testified, briefly, in favor of several pieces of common-sense legislation meant to improve the lives of persons with serious mental illness in Texas. Several years ago, a well-organized group of psychiatrists and other mental health professionals were able to persuade Texas legislators to draft a bill that would have allowed psychiatrists to detain a patient who entered care voluntarily for up to four hours so they could seek a court order for involuntary detention if they thought the patient was a danger to themselves or others. I was called forth to the testimony table along with two psychiatrists from the Dallas area who supported the legislation. They were motivated to seek the new law by the tragic outcomes they saw in patients who walked out of their hospitals. The bill eventually passed both houses of the Texas legislature with two-thirds majorities, large enough to overcome a veto by the governor. It seemed certain to become law. But the governor vetoed the bill on the last day of the legislative session when no time remained to override his veto. He acted after receiving a letter signed by a large coalition of opponents with civil liberties in mind: They were leaders of Scientology and the related Citizens Commission on Human Rights, homeschoolers, anti-vaxxers, disability rights groups, and even the League of United Latin American Citizens—people who, for the most part, likely had no firsthand experience with serious mental illness and knew little about it. Another piece of legislation for which I testified briefly was a bill that would have created a red flag law, a legal mechanism for a concerned citizen to argue in court for the temporary removal of firearms from those suspected of being a danger to themselves or others. I never had much hope it would pass in Texas, and of course it did not, but I wanted to tell my story. A final piece of legislation for which I showed up to testify would have empowered emergency medical technicians (EMTs) to take someone in a mental health crisis directly to a psychiatric hospital instead of an emergency room. It was tabled and never went to a vote after a legislator questioned what would happen if EMTs thought a person was in a mental health crisis but was having a so-called medical problem. I understood that concern but thought it still might be better than the current system in Texas where only law enforcement officers and judges are empowered to decide whether to detain a person due to a mental health crisis and whether to take them to a medical facility or jail.

Balancing Self-Reliance and Emergency Services

Given our inability to allow for sensible reform, I have just about given up on legislative action in Texas. It may be impossible to get everyone on the same page for a universal mental health policy. It is a complex topic and requires complex solutions rather than a one-size-fits-all policy tailored to the needs of the majority with less serious mental illnesses. But needs vary with symptoms, just like the dermatological needs of those with dermatitis differ from those with melanoma. If we cannot pass legislation that is more sophisticated, perhaps we need to do what we can without changing the laws. Caregivers for those with serious mental illness are forced to become more self-reliant in such a situation. Frustrated that I am wasting my time at policy meetings, I have begun to focus on what I can do to improve my daughter’s chance to live a happy life without changing society or the law: Setting up a trust fund to help cover her expenses; reaching out to relatives who can keep an eye on her after my wife and I are gone; asking her to reach out to them for help. Following are some specific ideas.

Family safety can begin with the agreement that firearms and serious mental illness are a bad combination, mainly due to the risk of suicide. This may seem obvious, but it is something families with a culture of gun ownership may not think about. When an employee I knew was a gun owner tearfully told me his son had an initial psychotic break, I encouraged him to lock up his guns and ammunition. His son responded well to medication, achieving something close to an awakening that his psychiatrist called perhaps the best response he had ever seen. The employee later told me he had never thought about locking up his guns while his son was sick. After largely recovering, his son told his father that he had contemplated suicide by firearm while he was sick. Safety can include a plan to put other potential weapons out of reach in periods of instability—knives, scissors, hammers, etc. Keeping guns and other weapons in a safe place away from those with serious mental illnesses makes interactions safer and reduces the risk of tragedies for the patient, family members, and first responders. Strategy is important and might involve simply getting others in a household to safety when there is a threat of violent instability. I discussed this with an African American friend who told me his people have long had conversations about the risk of tragic outcomes when police are involved. In many circumstances, they have reached a community agreement to rely on themselves rather than calling the police.

First Responders: Perhaps police chiefs can be persuaded to partner with families in an agreement that if families keep guns out of a household where a person with mental illness lives, the police will not use guns in a response to that household. Some police departments already use tactical withdrawal, where they disengage with a person in crisis when they are not an immediate threat to anyone. Families can do the same rather than calling 9-1-1 immediately. In the words of Seth Stoughton, author of Evaluating Police Uses Of Force, when police respond, at least one gun is introduced to a situation where there may have been none previously. He writes that when a gun is unholstered by a police officer that hand becomes unavailable for wrestling with a suspect, and putting a gun back in the holster is difficult in a crisis. He and other experts note that having a gun taken away is a police officer’s greatest fear, and using a gun to resolve conflict is the area of greatest training for police officers. Stoughton says it is important for police to receive training in the use of less lethal weapons so they are confident enough to use them.

I hope some non-police responder models, such as those being used by the CAHOOTS program in Eugene, Oregon, and in some other cities around the U.S., will be successful and will encourage other city leaders to imitate them.

Psychiatric healthcare: Improving the patient experience minimizes trauma and the need for involuntary treatment. Surely there are psychiatrists with an interest in patient-doctor communication who are already doing this successfully and can share their skills with others. Psychiatrists can enhance the physical environment and better learn how to use interpersonal skills to persuade patients to voluntarily remain in treatment. But voluntary programs do not always work for those who have lost touch with reality, and parents need allies in psychiatrists when that happens. In such cases, there is a role for involuntary treatment as a rare option that is preferable to homelessness, incarceration, or death. The number of homeless people with serious mental illness in Texas is appalling to outsiders who see it. But local judges too often believe the law prevents them from forcing persons into treatment or are ideologically opposed to doing it. Some consider Assisted Outpatient Treatment (AOT) a voluntary program. That kind of dogma is an inappropriate obstacle to psychiatric care.

Regrettably, Texas physicians and nurses have sometimes contributed to the intersection of mental illness with criminal justice and incarceration by pushing for laws that make it a felony to assault a practicing clinician rather than demanding safety protocols to prevent assaults and injuries in emergency departments. But I heard one psychiatrist at a policy meeting say, “Bring them directly to us, because we know how to handle them.” That is what I like to hear.

Summary

My personal conversations with social workers, sociologists, journalists, psychologists, criminologists, military veterans, and others have taught me there are many conflicting perspectives about mental illness. Reading Awais Aftab’s blog, journal articles, and books by authors with incompatible ideas about mental healthcare has confirmed for me the existence of widely varying and honestly held perspectives, many by people who are humble and willing to listen to different perspectives. However, I have largely given up trying to persuade ideologues to be open to the need for more sophisticated policies meant to serve the minority with serious and persistent mental illnesses. Bertrand Russell said, “the fundamental cause of the trouble is that in the modern world the stupid are cocksure while the intelligent are full of doubt.” Although psychiatrists, neurologists, and researchers interested in helping those with serious mental illnesses may be unsure about the answers to mental illness, they can perhaps be more confident and assertive that their theories and practices are better supported by evidence than the folklore of the uninformed. They should know their practices are more likely to help than hurt persons with mental illnesses and their families.

Psychiatry has lost too much control over medical decisions to the legal system in the United States. Recently, this has become a broader issue that affects other medical specialties in end-of-life choices, birth control, abortion, and gender-affirming care. A larger segment of society is now experiencing the kind of legal obstacles that parents of adult children with serious mental illnesses have faced for many years. I hope psychiatry will partner with other physicians to push back. I hope the psychiatrists who read this guest blog will put forth the medical policies they support with the same confidence and energy as doubters, matching their passion and skillfully countering their arguments about matters of medicine, knowing their work is based on evidence and motivated by a sincere desire to help their patients. Symptoms of mental illness deserve our empathy rather than stigma and blame; homelessness is an undesirable and life-threatening condition and not a civil right; first responders should be clinicians rather than law officers; and treatment should be provided in comfortable trauma-reducing settings rather than in jails or prisons. If judges, attorneys, and peers can agree on such principles and actively support them, they can partner with family caregivers and clinicians. Anti-psychiatry dogmatism is incompatible with cooperation in mental healthcare and must be firmly rejected. It is hard to be dogmatic when you’ve had the diverse lived experiences that my wife and I have as parent caregivers. We appreciate the complexity of the issues involved in psychiatric healthcare and value what psychiatrists contribute.

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Comments are open.

See also:

Asking better questions about involuntary psychiatric care

Cultivating Thoughtfulness in Involuntary Care: A Q&A with Dinah Miller

Reconsidering Involuntary Psychiatric Care: A Conversation with Rob Wipond (Part One)

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