The Price of Silence

Dear Friends,

This is a humbling day for me. The first time I read a book and realized the power that words can hold over our hearts and minds, I knew that I wanted to write. Today, my dream of publishing a book has come true with The Price of Silence: A Mom's Perspective on Mental Illness, from Hudson Street Press.

But for me, the price of realizing my dream was beyond anything I imagined. I wrote The Price of Silence because like most  of us, after Newtown, I wanted answers. My quest through the complex and often hostile systems that families and children who have mental illness must navigate was personal: I live this experience daily with my dear son.

Kirkus Reviews described my book as "a searing indictment of the lack of affordable care available for the treatment of mentally ill adolescents."

Andrew Solomon, author of Far From the Tree (which everyone should read), wrote: 

In this courageous, determined, radical book, Liza Long exposes the dearth of alternatives for parents of kids with mental illnesses, the shame that attends their perceived failures, and the hope that such families may find their collective voice and demand better options.  I hope her passionate cry is heard far and wide.

I am profoundly grateful to the families, providers, police officers, educators, and advocates who shared their often painful stories with me. It's not easy to talk about mental illness; I know that truth firsthand. And I am especially grateful to my son, whose perspective provides valuable insight into mental illness and how it affects children. His humor, intelligence, and love have made my life immeasurably better. He is not a bad kid--he is an incredibly brave kid (and he just finished writing his first book! At age 14! It's about demigods from outer space).

But today, though I am grateful that so many people are speaking up and sharing their stories. I am also saddened at our inability as a society to act. People who have mental illness, including children, are "treated" in jail or left to die on the streets or by suicide. This is a national tragedy of epic and growing proportions. I feel that we have a moral obligation to care for our children, brothers, sisters, parents, friends, and colleagues who have mental illness.

I hope you will read my book. But more importantly, I hope that you will join me in speaking up for change. Please contact your representatives in  Congress. Join Treatment Before Tragedy. Participate in your local NAMI walks this fall. And share your stories. Their truth is powerful. Together, I know we can make a difference. In the words of one of my favorite poets, Robert Frost:

 

Only when love and need are one, 

And the work is play for mortal stakes

Is the deed every really done

For heaven and the future's sakes.

These are our children, and this is their--and our--future.

Best to you all!

Liza

P.S. If you do want to buy the book, please consider a local bookseller. Here are two of my favorites:

Iconoclast Books
www.iconoclastbooks.com
671 Sun Valley Rd W, Ketchum, ID 83340
(208) 726-1564

Rediscovered Books
www.rdbooks.org
180 N 8th St, Boise, ID 83702
(208) 376-4229

Oh SAMHSA, Where Art Thou?

Forced treatment already exists. It's called prison.

What did Newtown mean, if we can’t get help for children and families in mental health crisis?

I have a confession to make. Until about a year ago, I had no idea what SAMHSA was. I had never even heard of it. My son has struggled with serious behavioral issues for more than nine years, which we now know are caused by his bipolar disorder. We were working with a small army of social workers, counselors, school personnel, psychiatrists, therapists—and I was well-versed in a small textbook of acronyms like IEP, SMI, ADHD, ODD, ADA, etc. But not one time was SAMHSA or any of its programs ever mentioned to me as a resource.

I’m going to assume that you’re like me, that you also have no idea what SAMHSA is or what it stands for. It’s the Substance Abuse and Mental Health Services Administration, and it’s important because it gives out a ton of grant money—they have requested $3.6 billion for next year—to community organizations, many of which I also personally support with my own time and money. According to the agency’s own website, “Congress established the Substance Abuse and Mental Health Services Administration (SAMHSA) in 1992 to make substance use and mental disorder information, services, and research more accessible.”

Well, to put it bluntly, if that’s its mission, SAMHSA sucks.

A New Kind of Stigma

One of SAMHSA’s top priorities is the elimination of stigma that surrounds mental illness. And that’s important, because stigma harms children and families. DJ Jaffe of mentalillnesspolicy.org recently argued that stigma does not exist—that prejudice and discrimination are the real problem. I disagree with him on the first point, but could not agree more fervently with the second.

You don’t have to go any farther than the SAMHSA webpage to see an example of prejudice and discrimination against people with serious mental illness. Look around. Can you find anything—even the littlest thing—that talks about SMI? The message I get from SAMHSA is this: “Behavioral health is essential to health. Prevention Works. People Recover. Treatment is effective.”

I wish this were always true. For people with serious mental illness, people like my son, too often it’s not.

Pretty words, no substance

SAMHSA, the very organization tasked with serving children who have mental illness and their families, creates stigma by refusing to talk about—let alone provide solutions for—the inconvenient truths that plague too many of us: violence, prison, homelessness, fear. In fact, in its focus on “behavioral health” and “recovery,” I would propose that SAMHSA actually creates its own pernicious, subversive form of stigmatization within the very community that is supposed to be supporting people with mental illness.

Behavioral health implies choice. So does recovery. SAMHSA promotes a consumer model, where people with behavioral problems choose to get help and recover. The problem is that this approach does not reflect reality. For many people who suffer from Serious Mental Illness—schizophrenia, bipolar disorder, or major depression—choice is not an option.

Forced Treatment Already Exists. It’s Called Prison.

Why does this matter? Because right now, Representative Tim Murphy has proposed legislation that would overhaul our nation’s broken mental health system, providing much needed treatment to people with serious mental illness and restoring accountability to SAMHSA, an organization that has suffered from a massive dose of mission creep. HR 3717, the “Helping Families in Mental Health Crisis Act,” was drafted after extensive consultation with parents like me, consumers of mental health care, law enforcement professionals, and other stakeholders in this increasingly serious mental health crisis that has created an environment where mass shootings or stabbings barely make the news anymore.

But community organizations are out in full force against the bill. I know this, because as I mentioned, I volunteer for many organizations, and I am on their mailing lists. The primary rallying cry against the bill seems to be the idea of “forced treatment,” or treating people against their will. Here’s an example of the type of language they are using:

[HR 3717] is intentionally designed to make it sound benign and to gloss over the potential harm and many rights violations. For example, 'increase access to mental health treatment,' in many instances, means increased force. Empowering 'family members' means taking away privacy protections and rights to confidentiality for adults in mental health services. Expanding 'access to evidence-based treatments,' means eliminating access to alternatives that don't have the funds to become 'evidence-based.' Advancing 'medical research' means severely reducing funds to other groups and organizations, including the Substance Abuse and Mental Health Services Administration (SAMHSA). 

Oh, I get it. You can’t show any measurable outcomes for your education or anti-stigma or peer support program, and you are afraid you’ll lose your funding.

As a response, Democrats are rumored to be presenting their own mental health bill this week, eliminating the provisions of Murphy’s bill which would have helped families in mental health crisis the most. What I want to say to these probably well-meaning representatives is this: forced treatment for people with mental illness already exists. It’s called prison. E.F. Torrey, the mental health industry’s Cassandra, issued a clear-eyed warning about treating serious mental illness in jail back in 1993, and today, the problem is even larger.  

What Murphy’s bill actually calls for is Assisted Outpatient Treatment (AOT), and it’s a proven way to keep people out of jail and off the streets. In drafting HR 3717, Rep.Murphy, a child psychologist, did his homework. He talked to those of us who are living this nightmare. He knows what we need to prevent another tragedy like what happened to Creigh Deeds, or to countless other families. I want to ask those representatives who are not supporting Murphy: what did Newtown mean, if we can’t get help for children and families in mental health crisis?

I’m Okay, You’re Okay

The thing is, I also agree with SAMHSA. For neurotypical people like me, behavioral health is incredibly important to overall health and quality of life. I know this firsthand. Like most Americans, I have personally experienced bouts of situational depression. My senior year of college, I broke off an engagement. My father was dying of cancer. I could not experience any joy or imagine any meaning to life. I became passively suicidal and began to control the only thing I felt I could control: my daily intake of food.

Fortunately, my wonderful roommates intervened and got me help. I learned to overcome my negative thoughts, to exercise, to practice yoga. I developed resilience. I am grateful to the therapists, and yes, to the Zoloft, that got me through that dark period in my life. The tools I learned have proved invaluable to me as I have faced even greater challenges throughout my life. And I return to therapy whenever I need an objective third party to help me realistically assess my situational challenges. I guess you could say I’m in recovery.

This kind of thing doesn’t work for my son who has bipolar disorder. Not at all. The recovery model doesn’t work all that well for a subset of the population who suffer from addiction, either, as Philip Seymour Hoffman’s tragic death demonstrated.

In “The Lie of Focusing on Those with Serious Mental Illness,” Dr. John Grohol argued that we should treat all mental illness equally.  I respectfully disagree. We need to provide help and hope to families in crisis, before the next Newtown, before the next (insert location of most recent mass shooting). Our current system of forced treatment—prison—or no treatment—homelessness—must end.

Next Topic: Mental Health (Again)

Since Nick Kristhof was kind enough to ask

On Sunday, January 5, 2014, a heavy hitter weighed in on the topic of mental illness. Pulitzer Prize winning columnist Nick Kristof of the New York Times published an op-ed piece that asked a provocative and welcome question to the mental health community: what’s next?

“Mental health issues pose a greater risk to our well-being than, say, the Afghan Taliban or Al Qaeda terrorists, yet in polite society there is still something of a code of silence around these topics,” Kristhof noted. “Indeed, when the news media do cover mental health, we do so mostly in extreme situations such as a mass shooting.”

Why is that, exactly?

As the mother of a son with mental illness, I have a few thoughts on this subject.

Stigma
I talked about the devastating effects of stigma for parents and children, including my own family, in my October 2013 TEDx San Antonio talk. It’s not just external; stigma is internal as well. Peer advocates metaphorically beat up parent advocates, as Marlowe Franklin, a close friend of Kelli Stapleton’s, notes in her recent blog post about peer advocate attacks. In case you don’t remember Kelli, she’s the mom who attempted to kill herself and her 12 year old daughter who has autism because she truly felt she had no other options.

Speaking of autism and internal stigma, the mental health community is not immune, with too many people acting as if bipolar disorder or schizophrenia are “bad” but a developmental disability like autism is “good.” Guess what, folks? A lot of times, developmental disabilities and mental illness are comorbid.

And you know what else? Lots of children with autism and/or mental illness beat their parents up, every single day in America. Here’s some advice about protecting yourself during an attack straight from Autism-Help.org: “When a person is attacking you, you have the right to defend yourself. This is best achieved through defensive and blocking moves. If you have not attended a non-violent self-defense or crisis intervention program, I would highly recommend it.” The same fact sheet recommends calling the police when behavior escalates to violence.

In rare but still too common instances, children with mental illness grow up to be adults who attack or kill their parents, like Adam Lanza. Nancy Lanza was his first victim. More recently, Gus Deeds was unable to get treatment for his mental illness, attacked his father Virginia State Senator Creigh Deeds, and in every parent’s worst nightmare, took his own life.

Why can’t we all be on the same side here, the side that wants effective treatment for ourselves and our loved ones before another tragedy makes the media take notice of mental health again? And when will we agree that mental illness is a medical problem, one that requires evidence-based medical, not “feel-good,” solutions?

Language
Stigma is inextricably linked to language. I have a simple suggestion for journalists that could go a long way toward improving the lives of those suffering with mental illness. Use people-first language. We never describe a child with cancer as “that cancerous child,” or an adult with heart disease as “that diseased woman.” But we say “autistic child” and “bipolar young person” all the time. We also use phrases like “bipolar” inappropriately, as this recent HuffPost article noted.

I personally think it’s time to adopt National Institute of Mental Health Director Thomas Insel’s suggestion and start calling mental illness what it is: “brain disease.” You can watch Dr. Insel’s TEDx talk here.

Something about the word “mental” conjures up the false notion of choice in mental illness. Perhaps it’s the word’s history. Mental comes from the Latin mens, which is closer to our conception of the word “mind” than the more organic word “brain.” Think of the legal phrase compos mentis, “of sound mind.” That’s the standard for determining whether a person can be guilty of a crime.

People with serious mental illness like schizophrenia or bipolar disorder do not “choose” their mental state. They have an organic brain disease, which can be treated and managed. But one in three people with schizophrenia attempts suicide, and one in ten completes suicide. That’s another new word for journalists. When we say that someone commits suicide, we are suggesting that their act is criminal. In most cases, suicide is a tragic, fatal, preventable outcome of an organic brain disease, not a criminal act, and not a rational choice made by a sound mind.

Triage
Considering our limited resources, it just makes sense to help those who are most in need. That was the rationale behind Representative Tim Murphy’s (R. PA) proposed “Helping Families in Mental Health Crisis Act.” Murphy, who practiced for years as a psychologist, is co-chair of the Mental Health Caucus and spent 2013 talking with stakeholders, including parents like me, about what we most needed to help our seriously ill children. The answer: access to medical care for the 11 million people who suffer from schizophrenia, bipolar disorder, or major depression. The bill seeks to accomplish this goal by empowering parents, increasing acute care beds, and promoting AOT (assisted outpatient treatment) for as many as 50 percent of schizophrenia sufferers whose symptoms include anosognosia, or lack of awareness of their illness.

The bill also addresses the critical shortage of child psychiatrists (one for every 7,000 children in the U.S.) with funds for telepsychiatry and seeks to reform SAMSHA by redirecting funds for community-based care toward evidence-based programs. The Wall Street Journal praised Murphy’s efforts, noting that “SAMHSA [the government agency charged with funding community mental health treatment] has little or no focus on medically driven care, and of its 537 full-time employees only two are physicians.”

Mental illness is truly a bipartisan issue, and in fact, we already have the resources to attack this problem that harms children, families, and communities. DJ Jaffe of MentalIllnessPolicy.org, a nonpartisan resource, advocates for “spending smarter” by using funds for mental illness, not for mental health. This is an important distinction.

Deborah G., the mother of an adult son with schizophrenia, recently set off an Internet maelstrom when she criticized peer-driven care: “How confident would you be entrusting your daughter with a life threatening, cancerous brain tumor to a system of care that has developed policies and therapies influenced primarily by "peers"?” she asked. Her answer—and the answer of so many other parents in her situation—not too confident.

This is not to say that peers don’t play an important supportive role. Mom-peers like Deborah are invaluable resources for me when my son is going through a crisis. What Deborah was saying is that she wants more funding to go toward evidence-based, medical treatments for her son’s very real medical condition.

Unfortunately for so many of our most seriously ill population, lack of insight condemns them not only to the mental prison of psychosis but also to very real prisons, where we have chosen, as a society, to warehouse them. As I said in my TEDx talk, spending $80 billion on prisons and just $1.4 million on the National Institute of Mental Health is just plain wrong.

That’s my three cents’ worth, Mr. Kristhof. Thank you for bringing this issue to the forefront. As you so eloquently noted, “if we want to tackle a broad range of social pathologies and inequities, we as a society have to break taboos about mental health.” Let's go smash some statues.

I Am Not Adam Lanza's Mother

Now that we’ve talked about mental illness, when will it be time to act? 

Photo by Charles Mims, October 2013

Republished from The Blue Review, December 15, 2013 

On the morning of December 14, 2012 I closed the door to my office and started to cry as the news of a tragic school shooting in Connecticut blew up my Facebook and Twitter feed. My then 13-year old son “Michael” had been in Intermountain Hospital for two days, placed there against his will after an inexplicable and violent episode of rage he couldn’t remember. After years of struggles, we still didn’t know what was wrong, or how to help him. I was exhausted, sad and afraid. The isolation of living with a child who had a serious, undiagnosed mental illness made me feel like there was no hope for me or my family. 

That night, I sat down and wrote my truth. I told about the years of missed diagnoses, medications that didn’t work, costly therapies. I wrote about my worst fears for my son’s future. And as a national tragedy beyond comprehension intersected with my personal sorrow, I called for a conversation about mental health. My cry for help, which I published on my formerly anonymous blog, “The Anarchist Soccer Mom,” was picked up by The Blue Review and republished under the title “I Am Adam Lanza’s Mother.” The essay was shared everywhere. Many people wrote me to say, “You told my story! I am Adam Lanza’s mother too!” But a few excoriated me for talking openly about my son’s struggles with mental illness. 

One year after the Newtown tragedy, where has that conversation about mental health led us as a nation? The official report about the school shooting at Sandy Hook Elementary School could be summarized in five words: no answers, lots of guns. Lanza’s mental illness was certainly a factor. As the report notes, “the shooter had significant mental health issues that affected his ability to live a normal life and to interact with others, even those to whom he should have been close.” Like his mother. 

As the one year anniversary of the shooting approached, with yet another school shooting in the news, policy makers were paying more attention to mental health. After meeting with the families of the Sandy Hook victims this week, Vice President Joe Biden, whose initial response to the tragedy was to push for tighter gun control, announced a $100 million increase in funding to help people access mental health services. Half of the money will come from the Affordable Care Act; the other half has been pledged for rural mental health care, which should be welcome news in states like Idaho. 

Lots of things have been promised. For example, when the state mental hospitals closed, we were promised community based care. That never happened. The fact is that in December 2013, one year after Newtown, if you or a loved one is in crisis, you still have to call the police. And we continue to use prisons as the new institution to treat our adults and children who have mental illness. 

In the past year, I have slowly found my voice as an advocate for children’s mental health. I haven’t done it alone — my son has joined me in calling for an end to stigma, by bravely speaking out about his condition on Nova and in a StoryCorps interview. We were honored to share an award for family advocacy from the Idaho Federation of Families, which my son placed prominently on our piano. 

Where is my family a year later? I’ve had quite a bit of time to think about what I wrote. And I can’t sugar coat it: the consequences of my decision to put my name on my story were devastating to us personally, as we learned firsthand just how harsh the stigma of mental illness can be. 

Yet there were also rewards. I researched and wrote a book, The Price of Silence. The book will be released by Hudson Street Press in the fall of 2014.which explores stigma and other barriers to mental health care for children and families as they try to navigate the healthcare system, public schools and the criminal justice system. I also had the opportunity to speak at TEDx San Antonio, where I asked the audience why we never see a picture of a child with mental illness in a grocery store checkout line. 

My family has also found some answers. Michael now has a diagnosis — bipolar disorder — and medication that works. I can’t tell you how much this has changed our lives for the better. A year ago, I had almost no hope for my son. Now, we are talking about where he will go to college (he says Harvard or Oxford, but he’s going to have to bring his math grade up just a little bit). 

Above all, I’ve learned this year that I am most emphatically not Adam Lanza’s mother. While I still feel a great deal of empathy for Nancy Lanza, who surely loved her son as I love mine, we are different in two important ways. First, by acknowledging the seriousness of my son’s condition, I am empowered to do everything I can to ensure he gets the treatment he needs. 

Second, I don’t own guns, and I never will. 

Some have speculated that perhaps guns were a way for Nancy Lanza to connect with her son. My son and I share some common interests too: writing, history and Greek mythology. As far as I know, a love of history never killed anyone. 

Still, I believe that in the futile search for answers, too many people continue to blame Adam Lanza’s mother, the first victim of the tragedy in Newtown. Emily Miller of the Washington Times is representative of that view. As she explained in her Op Ed piece that followed the release of the official Sandy Hook report:

"In the end, we can’t blame lax gun-control laws, access to mental health treatment, prescription drugs or video games for Lanza’s terrible killing spree. We can point to a mother who should have been more aware of how sick her son had become and forced treatment.”

If only it were that easy. Instead, numerous barriers still exist for children and families who need access to mental health care. In 1999, NAMI published a report called “Families on the Brink: The Impact of Ignoring Children with Serious Mental Illness.” That report addressed school shootings in the wake of Columbine:

"As we struggle to make the lives of all our children better in the wake of unthinkable school violence, we must not forget our children who have serious mental illnesses and their families who love them.”

On December 14, 2012, more than ten years later, we watched again in horror as we witnessed exactly how devastating that impact of untreated mental illness could be to a community — and very little if anything had changed for children and families who needed help. 

If 2013 was the year to talk about mental illness, let’s hope that 2014 is finally the year to act. 

Watch my interview with Marcia Franklin on Idaho Public Television’s “Dialogue,” December 13, 2013.