Two Years to Nowhere

Two Years After Newtown, Mental Health Still Matters, and Most People Still Don't Care

"On the first day of Christmas, my true love gave to me..."

This weekend, on the second anniversary of the Newtown shootings, I took my daughter to see her first performance of the Nutcracker. Unsure of the exact venue, we parked on the street and followed the hordes of blond girls dressed just like my daughter in velvet dresses with satin sashes. I have wanted to reenact this holiday tradition from my childhood with my own now 9-year old for many years. But this year was the first time we could actually go together. Two years ago, her brother was in an acute care psychiatric hospital, and I shared our painful story with the world. A year ago, she was with her father, who talked a judge into giving him full custody by arguing that the younger two children were not safe in a home with their brother. Mental illness affects more than  the individual: it affects the whole family.

This year, two years after Newtown, our family is stable, happy, spending the holiday season the way we imagine families in Hallmark cards spend it: decorating our tree, wrapping presents, drinking hot cocoa, and making up new lyrics to “The 12 Days of Christmas.” But we know how fragile, precious, and rare this gift of Christmas present is.

What changed for my family in the two years since Newtown? One word: treatment. Before Newtown, I was afraid to speak up and demand help for my son. After Newtown, in large part because I shared our family’s private tragedy, my son, unlike Adam Lanza, got the help he needed. A diagnosis of bipolar disorder does not “fix” all the challenges my son and our family still face: after years of maladaptive coping strategies, he—and we—are learning a new normal, where we ask for help when we need it. And we still struggle, as many families do, with access to care. But we have what so many other families still lack: hope.

In the immediate aftermath of Newtown, I felt tremendous optimism that people finally cared and understood about mental illness. Sadly, I was wrong. The simple changes—earlier interventions, more access to care, more support in the school system, day treatment crisis centers—have not materialized. We continue to blame parents—and children—for behavioral symptoms of brain disorders. Worst of all, we continue to sentence people to jail or relegate them to homelessness because of their illness.

Along with other mental health advocates, I’ve watched the responses to the tragic deaths of Michael Brown and Eric Garner with considerable sympathy. People with mental illness, no matter what their race, also face challenges with law enforcement officers, especially in cities where police lack Crisis Intervention Team training. Here is a partial list of people with documented mental illness who were killed by on-duty police officers in 2014:

Here's an idea! We could send an ambulance on mental
health calls, like Norway does. 

1. Keith Vidal had documented schizophrenia. When his family called 9-1-1 for help with a behavioral episode, the police shot and killed the 90-pound 18 year old. 
2. Parminder Singh Shergill, a U.S. Army veteran who suffered from PTSD, was shot and killed by police after his mother called and asked for medical help. He lunged at officers with a knife. 
3. James Boyd, a homeless man with mental illness, was shot and killed in a confrontation with Albuquerque police. 
4. Matthew Pollow had schizophrenia. He lunged at the police with a screwdriver and was shot and killed. 
5. A woman in Santa Clara called police to say she was suicidal. When she answered the door holding a baseball bat, they shot and killed her. 
6. Dontre Hamilton, who had schizophrenia, was shot and killed by Milwaukee police in a confrontation. 
7. David Latham, who likely had schizophrenia and had been off his medications for a few days, was shot and killed by Virginia police when his aunt called 911 to ask police to help him. 
8. Jason Harrison, who had schizophrenia, was killed when his mother called the Dallas police to ask for medical help for her son. 
9. Nick Davis, who had schizophrenia and bipolar disorder, was shot and killed by police when he swung at them with a crowbar. 
10. Rosendo Gino Rodriguez was killed by police in Midland, Texas when he retreated to his room during a welfare check initiated by his family. 
11. Michelle Cusseaux was shot and killed by Phoenix police who were tasked with taking her to a mental health facility on an emergency hold. 
12. Kajieme Powell, a St. Louis man with mental illness, charged police yelling “Shoot me now!” They did, just days after Michael Brown’s death in nearby Ferguson. 
13. Chelsea Fresh, who suffered from bipolar disorder, was shot and killed by police in Beaverton, Oregon. She was holding a rifle. 
14. Calvin Peters, a Brooklyn man who had bipolar disorder, was shot and killed after he stabbed a student in the face. 
15. Thomas Read was shot and killed in New Jersey when he came at police with a knife. He had schizophrenia and had been unable to get his medications because of a problem with his health insurance.

This list is not exhaustive: it’s hard to track how many people are killed by police each year and whether those killings are justified. And the problem works both ways. Just as people with mental illness are killed by police, law enforcement also faces threats: Mental Illness Policy.org has tracked 115 deaths of police officers since 2009 that can be attributed to people with untreated mental illness. 

I should stress here that people with serious mental illness are not likely to be more violent than people in the general population, unless they are untreated. Without treatment, the risk of violence to self and others rises. That has certainly been my experience with my own son. Once we had a correct diagnosis and medications that worked, the threats of harm to self and others stopped. I don’t believe that medication alone is the answer—talk therapy and occupational therapy are extremely important in helping my son to navigate a world that presents him with significant sensory challenges. But lithium changed everything for my son and my family.

I think often of the Newtown families, the pain of that first Christmas without loved ones, of gifts wrapped for children who would never open them, of holes left in hearts that will never fill. And I also think of Adam Lanza and his mother and wish for all our sakes that he could have gotten treatment before tragedy. That’s my wish for every family who struggles with the often overwhelming challenges of mental illness. But we can’t do it alone. We need the support of our friends and communities. We need society to stop blaming us and our children. But most importantly, we need access to care. Without treatment, two years after Newtown, for too many families, Christmas is a time of sorrow and loss and grief. 

Dear Claire Dunphy

From one soccer mom to another, here’s why your Halloween Insane Asylum of Horror was anything but awesome

I'm going with Awesomeland.

You may remember seeing me at the soccer field, the grocery store, the PTA meetings. Like you, I’m pretty Type A when it comes to raising my kids; for many years, I viewed birthday party goody bags as a competitive sport. But then something happened to my family that I wouldn’t wish on anyone: my second son began to show symptoms of a serious chronic illness.

By the time he was in preschool, we knew something was not right. At first, they said maybe it was autism. Later, they would tell us it was Oppositional Defiant Disorder, or Intermittent Explosive Disorder, or Attention Deficit Hyperactivity Disorder. There were so many labels and different medications! We took parenting classes, got on wait lists for specialists, and restructured our entire family’s life around the child who had an illness, as many families in our situation do. We also became increasingly isolated from our friends and community, as it became harder and harder to manage our son’s behavioral symptoms.

In the midst of the struggles to find an answer, my marriage disintegrated. It was not my son’s fault. But the stress of raising a child with a serious illness can prove overwhelming sometimes. And suddenly, like many other single moms, I was doing it alone. I remember one time at the soccer field, when my son’s shoe came off, and he couldn’t fix it, and he collapsed, wailing and screaming. I will never forget the look of absolute disgust on your face and the faces of other parents that day, the look that said, “What’s wrong with that mom? Why can’t she control her kid?”

Or the time in the grocery store when my son was screaming “Child abuser! Child abuser!” at me and you threatened to call the police and took down my license plate number. Fortunately, the store manager protected me. “I understand,” he whispered to me. “My nephew has autism.”

Or the time you stood at your front window and gawked when I called the police on my own son, because in America, that’s what we have to do when our children have an uncontrolled brain attack. You stared as three policemen put my son in handcuffs and carried him twisting and screaming to the back of their car. You didn’t hear the policeman say to me, “You’re a good mom, ma’am. Never forget that. We know your son needs help, and we will help him to get it.” (God bless our crisis intervention team-trained police department!).

When you found out my son was in an acute care psychiatric hospital, you didn’t offer to watch my other children so I could visit him. You did not bring me a casserole. Mental illness is not a casserole disease, I guess. Fortunately for us, after nine years, my son finally got the correct diagnosis. I was relieved when I found out he had bipolar disorder, because I respect and admire my friends and acquaintances who are successfully managing their bipolar disorder and living productive, happy lives. This was the future I had thought my own child could never have. Suddenly, we had hope.

I’m a soccer mom like you, Claire. And what happened to my child could happen to your child. Mental illness is not a choice or a character flaw. This is why your Insane Asylum was so offensive to me and to my son. It’s not funny to ridicule people who are sick. Worse, the image of mental illness you portrayed is not remotely what mental illness really looks like.

You seemed to recognize your cruel mistake when your neighbor Ronnie lied to you and told you his wife had spent six months in the “cuckoo farm” (lovely words, those). But what about all the real people—children included—who could have been harmed by your Halloween “joke”? What message did you send your own children? My son has worn a straitjacket too, but his was during a behavioral episode. And like many children with mental illness, he has been institutionalized, though we don’t really have insane asylums anymore. We have something far worse: prison. My son was in juvenile detention four times before he was 12 years old, not because he's a bad kid, but because he had behavioral symptoms of a brain disease.

Claire, here are some truly scary facts about mental illness:

•  In any given year, only 20 percent of children who need treatment for psychiatric disorders actually get it. 
• Half of all mental illnesses start before the age of 14. 
•   65-75 percent of youth in juvenile detention have at least one mental illness.
• It costs states $5.7 billion per year in the U.S. to incarcerate an average of 93,000 youth. 
•  There is not a single child psychiatric hospital bed in Orange County. Not one. 
• One in five people with bipolar disorder (what my son has) die by suicide. 
• Worldwide, suicide is the cause of death for more than 800,000 people each year. 
• Adolescent males with mental illness are being shot and killed by police in ever increasing numbers. 

Many people have defended your actions, saying “It’s Halloween! She was just having fun!” Others have accused me of focusing too much on political correctness. But I don’t think I’m out of line in asking for some basic respect from you. We talk a lot about the word “stigma” when we talk about mental illness. But what we really mean is “discrimination.” Your unrealistic and negative portrayal of mental illness perpetuates that “us vs. them” mentality that allows those of us who are not living with it to continue thinking mental illness is a choice, or that it is caused by bad parenting.

So Claire, as a fellow soccer mom, I’m officially asking for an apology. Your Insane Asylum of Horror, had you let it stand, would truly have been the most frightening house in the neighborhood. But for different reasons than you think.

P.S. To the writers of Modern Family: one in five children in the U.S. will suffer from a serious and debilitating mental disorder at some point before age 18. You have five children on your show. I challenge you to introduce mental illness for one of those children into next season’s plot line. You could use your platform to change people’s perceptions about mental illness in real and meaningful ways.

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.

This Is Serious

Image from http://agathoi.wordpress.com/2012/12/02/stoic-week-and-a-trip-to-the-er/ambulance/

Why HR 3717 “Helping Families in Mental Health Crisis Act” is so critical to care

It’s 3:00 in the morning. I’m sitting in a brightly lit waiting room at the ER, cuddling my then-three year old son, who can’t stop screaming and tugging at his ears. His cheeks are bright red; his duck-fuzz white hair stands up in all directions. I rub his green crocheted blankie—he calls it “Biss” for reasons still unknown—against his forehead, trying to sooth him.

I’m exhausted. The whole night has been like this. But it looks like we’re next in line for treatment.

Then my son's cries are drowned out by wailing sirens. An ambulance pulls up to the bay; we hear (but cannot see) a flurry of activity, intercoms buzzing. It’s a car accident, severe trauma. We wait, but without resentment. The Emergency Room is not like a grocery store checkout line, with first come, first served. It’s constant triage, assessing the most urgent needs first.

Ten years later, it’s my son, now 13, in the ambulance, held in restraints to keep him from bolting or striking people. Ten years later, it’s my son at the front of the line for treatment when we reach the emergency room. But once he’s calm and rational again, they send us home with five days’ worth of Zyprexa. There are no beds in the psychiatric hospital.

My emergency room story ended better than Virginia State Senator Creigh Deeds’s, whose beloved son Gus stabbed his father and shot himself.  My story ended better than Jared Loughner’s, who fired on Congresswoman Gabby Giffords. My story ended better than Eric Belluci’s,who (despite the existence of Kendra’s Law) killed both his parents with a hunting knife. My story ended better than Kelli Stapleton’s, who became so frustrated with the lack of support that she took her daughter to the woods without planning to return.

I still fear, as every parent of a child with a serious mental illness fears, that my son’s story may end like Kelly Thomas’s—that he will be beaten or shot by law enforcement officers who lack training in dealing with people who have mental illness.

These stories—my own and millions of others—are why I strongly support Representative Tim Murphy’s proposed comprehensive legislation to overhaul a broken mental health system. I was one of the parents who testified in an initial fact-finding forum, where Rep. Murphy and his colleagues asked what families need to help our children. You can read my op-eds in the Idaho Statesman and  Hartford Courant, both of which outline briefly why this legislation is so important for families like mine.

But the critics of HR 3717 are out in full force. Their position is pretty well summarized on psychcentral.com author Jon Grohol’s blog post, “The Lie of Focusing onThose with Serious Mental Illness,” written in response to mental health advocate DJ Jaffe, who dared to address the opposition’s elephant in the room: funding. Representative Murphy’s bill would restructure SAMHSA and require accountability through evidence-based outcomes. And some people are afraid of that.

I actually agree with Grohol about a few things. There’s no question that ADHD or anxiety or OCDs can make life difficult for those who have these conditions. And he’s right about arbitrary lines drawn in the mental health community—I cannot tell you how often I have heard the phrase, “Well, my son has autism. That’s just a developmental disability, not a mental illness like what your son has.”

But Grohol is incorrect in stating that supporters of Murphy’s legislation don’t think everyone with any kind of mental illness—not just serious mental illness—deserves treatment. As for the “lie” of serious mental illness? Here’s the thing. People with serious mental illness are NOT treated better or with different resources, as Grohol contends. Too often, they are not treated at all—at great cost to individuals, families, and communities. There are ten times as many people with mental illness in jails as in hospitals—read author Pete Earley’s excellent response, calling this fact “a national scandal.”

My biggest problem with Grohol’s argument is this statement: “What’s not needed is cramming forced treatment laws down state’s throats — even if their own citizens don’t want them.”

Forced Treatment. Wow, that sounds horrible! Kind of like the Death Tax—remember how the Republicans so brilliantly re-branded the estate tax, which affects a very small percentage of Americans, and made us all afraid that we would have to pay it?

We’re not talking about “forced treatment” here. We are talking about saving lives of people who, as a symptom of their illness, may not be aware of their condition. And the correct term is Assisted Outpatient Treatment or AOT. Already in the U.S., 45 of 50 states have AOT laws on their books, because they recognize that these laws help people with serious mental illness, save money, and improve communities. The fact is that AOT laws work. They improve the lives of people with mental illness and help their families. They reduce recidivism. Most important, they keep people with mental illness out of prison.

Let’s go back to my first night in the emergency room with my son. He had a double ear infection. The doctor was able to soothe his pain with a topical solution and sent us home with a prescription for antibiotics. The next day, he was a (mostly) cheerful preschooler again.

But the person who was in the car accident likely faced many months of recovery. I see mental illness in the same way—no “arbitrary lines,” no “Balkanization,” just sound, medical treatment decisions about urgency of care. I’m not saying my son’s bipolar disorder is somehow “better” or “more important” than your child’s ADHD. But the reality is that your child’s ADHD probably won’t land him or her in jail.

That’s not my reality. 

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.

My Jenny McCarthy Moment

Do little white pills cause autism spectrum disorders?

Wanting simple answers to complex problems

On a sunny Sunday morning, as I tried to ignore the sad news of the latest mass shooting in Santa Monica (near my former home), I tunneled through the perpendicular worlds of scholar.google.com (peer-reviewed, fact-based) and google.com (popular, fear-based). I was researching a drug called terbutaline, also known as brethine, an asthma medication that has long been used off-label to stop contractions in pre-term pregnant women.

In 1999, I was one of those women. And until a few days ago, I had never given terbutaline another thought. But while speaking with another mom of a son with developmental disabilities and mood disorders, my spine chilled and my ears started to ring when she said, “I was hospitalized for pre-term labor and given terbutaline.”

My contractions started after a long hike in my 29^th week of Michael’s pregnancy. At first I thought they were just strong Braxton-Hicks, but when they wouldn’t stop, I ended up in the emergency room. I was given an injection, hospitalized for a few days, and sent home on bed rest with a bottle of little white pills.

What I remember most about the pills was the breathtakingly awful headaches and painful tremors they caused. I also remember feeling resentment toward the baby in my body, for making me endure so much pain. In the end, he was born on his due date—and he was the happiest, sweetest baby a mother could ask for.

And now, 13 years later, Michael is still happy and sweet—except when he isn’t. He can’t tie his shoes or remember to brush his teeth. He walks with an awkward gait and has serious sensory integration issues. His most recent diagnoses include PDD-NOS and juvenile bipolar disorder.

Which is where Ms. McCarthy comes in. I have a great deal of sympathy for Jenny McCarthy. Any parent whose child is diagnosed with a life-changing condition, whether it’s cancer or juvenile diabetes or autism, wants to know why. What happened to cause this? Why did this happen to my child?

After her son was diagnosed with autism in 2005, McCarthy famously latched on to a 1998 Lancet study that incorrectly linked autism to vaccinations. That controversial study, which followed 12 children diagnosed with developmental disabilities, has now been retracted; there is no sound scientific evidence linking vaccinations, even those containing thimerosol, to autism.

   

Even though I have sympathy for McCarthy, I routinely assign the autism/vaccination controversy to my students as a critical thinking exercise in learning how easy it is to latch on to an “easy” but often wrong answer. As that wit H.L.Mencken famously said, “There is always a well-known solution to every human problem — neat, plausible, and wrong.” 

So as I scour Google Scholar for recent articles about terbutaline and autism, I have to ask myself: am I pulling a McCarthy? Do I want this one thing to be the answer, to the exclusion of all other possible things? Do I need an easy answer?

To be fair, the FDA has taken recent studies linking terbutaline to possible developmental delays seriously, issuing a Black Box warning for the drug in 2011: “Terbutaline should not be used to stop or prevent premature labor in pregnant women, especially in women who are not in a hospital. Terbutaline has caused serious side effects in newborns whose mothers took the medication to stop or prevent labor.”

I find myself inevitably drawn to comparisons with Thalidomide, the infamous 1960s drug prescribed off-label for morning sickness that caused thousands of teratogenic birth defects worldwide. Thalidomide was one of the first drugs to provide solid, irrefutable evidence that substances ingested by the mother can cross the placenta and cause harm to the developing fetus. 

If the link between terbutaline and autism is substantiated, then the comparison to thalidomide is an apt one.

In today’s paper, the front page story (right below the Santa Monica shooting) featured a young man headed off to UCLA at the age of 14—a bright, promising chess player with true gifts in math and science.  My son Michael attended the same exclusive magnet school until he was asked to leave because his behavioral problems were too distracting to the other students.

Would that story have been about my son, if only I had refused to take terbutaline?

Simple answers are usually wrong. In the end, the question comes down to a philosophical one: free will or determinism.  Genes, environment, nutrition, medication—all these must certainly play a role in developmental disorders. But they don’t determine the outcome of our lives. Michael still has choices, and good options, which will only improve with ongoing research and changes in society’s current understanding of mental illness and mental disorders.

Thalidomide babies were often born without limbs, or with phocomelia (“Seal limbs”). But that very visible disability didn’t stop Mat Fraser from becoming a drummer, or Tony Melendez from playing the guitar (with his feet), or Thomas Quasthoff from singing his heart out.

Michael’s disability is less visible, but no more deterministic. He too can be what he wants to be. The path just might be longer and more roundabout than I expected that summer morning, when my hike triggered early contractions that set my son’s life—and my life—on this path.