Victoria Costello

Parent advocate, science journalist, author

Mental Health Advocacy: Empowering Lived Experience

with Evidence

MY FAMILY STORY

What I’ve learned

I was able to save myself and my sons from the worst effects of these life-

threatening mental disorders only after I combined our lived experience

with the scientific evidence on family mental illness – and use both to find

and fight for the treatment we needed.

What is lived experience?

The pain you feel, the lessons you learn and the

strength you gain as someone dealing with a

mental disorder in oneself, or as the parent,

partner, or child of someone with a mental

illness.

Lived experience comes from:

◦ Recognizing symptoms and asking for help -- despite the stigma

◦ Seeking and obtaining diagnosis and treatment

◦ Overcoming obstacles presented by medical & mental health care systems, insurance companies, social services and schools AND misguided popular opinion to do what’s right by your child.

◦ Managing the mental disorder as a fact of individual and family life – not allowing it to consume your lives – reaching out to the larger mental health community for support and helping others who are in need of your “lived experience”.

A positive shift in public attitudes on mental illness

MENTAL ILLNESS IS A MEDICAL

CONDITION AFFECTING THE BRAIN

71% are extremely or very confident

12% are somewhat confident

In total 92% say “YES”

AP Survey -- April 22, 2014

Still, such “progress” doesn’t touch the heartbreaking loneliness of a parent facing mental illness in a child.

Empowering Lived Experience with Evidence

• WHAT IS EVIDENCE? • HOW PARENTAL INTUITION CAN BE USED AS

EVIDENCE• WHY PARENTS NEED TO UNDERSTAND BRAIN

AND MENTAL HEALTH RESEARCH

Parental intuition as evidence. To recognize symptoms of a mental disorder in a child or adolescent requires paying attention to subjective cues; becoming aware of behavioral changes and signs of emotional, physical and cognitive distress –

In other words, evidence gathered by using your intuition as a parent!

“I sat down behind a dumpster, declared it my kingdom

and began drawing soldiers.

I drew an angel with eyes and tits.

I drew knights to fight my holy war.

I began to forget that I was back there ‘cause

I was scared of the world.”

Alex’s poem and a self portrait at 16. In another context this can be seen as evidence of an adolescent’s increasing state of social withdrawal and paranoia

More evidence…a conversation with Alex, at age 17…

How was art class today? I asked after several minutes of monotonous silence.

He moved his head another quarter turn away, barring any further conversation.

I took the coldness of his non-answer as a final abandonment of normalcy between us.

It pushed my fear level up several notches until the pressure created a vice around my chest.

I wanted more than anything to be reassured that he was still there and we were still connected. Instead I took shallower breaths, surrendering to Alex’s need for silence.

By this point, I realized I was losing my son to some malevolent internal force.

BUT how does a child go fromTHIS … TO THIS…

At age seventeen, "Alex" lost his ability to finish a whole sentence or get even a half night's sleep, or face the other kids at school.

Were these symptoms? I wondered. If so, of what?

After Alex finally agreed to go for an evaluation… The doctors who examined him at UCLA Neuropsychiatric Institute told me he should stay for a month so they could make a proper diagnosis and stabilize what they called his psychotic symptoms.

Family secrets…as evidence From the Family Mental Health History Interview at UCLA… "And your paternal grandfather?" My son’s psychiatrist asked. "I'm almost sure that Grandpa Michael got hit by a train," I said, but it was as if someone else was speaking; I felt disconnected from the words and their possible meaning. "My mother said it was an accident."

Dr. C stopped scribbling and looked me in the eye. "Has it ever occurred to you that your grandfather's remaining on the railroad track may have been an intentional act?"

"No, never," I said, stunned by her question. "I mean, not until you just asked me."

A professional diagnosis as evidence “I have completed my diagnosis of Alex,” Dr. C said. “He has paranoid schizophrenia.”

“His condition is complicated by his recent use of marijuana and methamphetamine, but the underlying symptoms of paranoia and delusion are clearly present.

I’d like to keep him here for a month to stabilize him with an antipsychotic medication.”

Psychosis, a mysterious brain disease – then and now

In 1896, Emil Kraepelin, a researcher credited with naming schizophrenia and manic depressive (bipolar) disorder as diseases that were both genetic and biological in nature, wrote that the children of his schizophrenic patients, particularly those who went on to develop the disorder themselves were…

“…a little different in character and behavior from their peers—beginning in early childhood.”

Psychosis, a mysterious brain disease – then and now

In 2001, Joachim Klosterkotter, a researcher studying schizophrenia wrote:

The early signs of the neurodevelopmental process that can lead to schizophrenia, the impaired body sensations, reduced tolerance to stress, increased emotional reactivity, and especially, social deficits, can make their first appearance anywhere from two months to thirty-five years before the onset of the disorder.

1) RISK FACTORS FOR EARLY PSYCHOSIS:Childhood and adolescent behaviors

◦ Sitting, walking, talking later◦ Lack of physical coordination◦ Flatter affect◦ A preference for solitary play at age 4

◦ Lower IQ, learning problems ◦ Social anxiety and withdrawal and/or depression

2) RISK FACTORS FOR EARLY PSYCHOSIS:Adolescent behaviors

◦ Lower IQ, learning problems ◦ Social anxiety and withdrawal and/or depression

◦ Having two or fewer friends at age 17

◦ Antisocial and conduct disorders

◦ Acts of self harm◦ Cannabis use before age 15

3) EARLY PSYCHOSIS RISK FACTORS:Prenatal and parenting• Older father

• Maternal emotional distress during the first trimester: especially the loss of a spouse

• Obstetrical complications; any loss of oxygen

• Maternal malnutrition or famine

• Disease agents: influenza, rubella, especially during the middle trimester

• Maternal depression

• Physical maltreatment

Not a simple case of cause and effect It is thought that 30% of total risk for SZ can be traced to maternal prenatal infections BUT…

In a Finnish study, based on population level health data, researchers expected to find a correlation between urinary tract infections in pregnant women and children with SZ.

After following 9500 women who were treated for this infection while pregnant researchers found that the two factors didn’t connect UNLESS there was a family history of SZ.

If the mother had a parent or sibling with SZ the effect of the prenatal urinary tract infection in raising her child’s risk for SZ was five times greater than those who had a UTI but no family history of SZ.

4) EARLY PSYCHOSIS RISK FACTORS:Family history

Presence in the family of any of these:◦ Schizophrenia (SZ)◦ Any other psychotic disorder: bipolar

disorder, severe depression with psychosis

◦ Suicide◦ Repeated hospitalization for

psychiatric disorders

The Role of Family History

Not nature vs. nurture, but nature via nurture.

A family tree ‘pedigree’ for my family

As internationally recognized psychologist and pioneer in family studies Dr. Terrie Moffitt writes in the forward to A Lethal Inheritance…

‘’Family history can make the difference between 'treat now' or 'wait and see.‘”

______________________ The treasure trove of information from

longitudinal family studies

The Dunedin Study: tracking a thousand New Zealanders from birth to early midlife for a cohort born in 1970.

Among the Dunedin Study findings:

•Prevalence: of anxiety, depression, and substance dependence is about twice as high as the mental health community has been led to believe.

• Under diagnosis: People significantly underreport the amount of mental illness they have suffered when they are asked to recall their history in diagnostic interviews years after the fact

•High degree of comorbidity: 50% of people with a mental disorder have a second disorder; 50% of those with a second disorder have a third disorder

Dunedin findings on child mental disorders:

• Compromised brain functions were already apparent in the first decade of life and reach back to age 3 years.

• Kids and teens with conduct disorders have a higher risk for early psychosis

• Children as young as age 11 experience delusions and hallucinations

•The more close relatives a child has with depression, addictions, antisocial behavior or anxiety, the more likely he is to have one or more of these conditions and at a much younger age -- often before puberty.

When ‘boys will be boys’ becomes denial

Long-term studies (looking at three and four generations in families) have shown that boys with early conduct problems (refusal to follow authority, cruelty or extreme aggression as a young child) are at a much higher risk for developing adult antisocial disorder and psychosis in young adulthood.

[READ LI…p 71-72]

Could my family history of addiction and depression – and fights, arrests, premature and “accidental” deaths -- be linked to Alex’s psychosis?

Only after Alex’s diagnosis at UCLA did I ever consider that this grandfather who I'd never met could have taken his own life, or the implication that follows from it: that there was mental illness in my family's past.

Of course, at the time I didn't know that 80 percent of suicides have a severe mental illness.

Links between mental illness and suicideWHO DIES BY SUICIDE?

80% of people who die by suicide have a debilitating mental disorder.

Nearly 1 million people complete suicide every year with over 50% aged between 15 and 44 years

Suicide is the leading cause of death for youth under age 24.

Findings from the Global Burden of Disease Study 2010, made up of worldwide data from the World Health Organization (WHO) published in PLOS ONE (April 2, 2014). (Note: World Health Org, source of data for this study, now classifies addiction as a major mental disorder.)

Which disorder leads to most suicides?

The Cannabis Connection: why pot is (still) NOT ok for your teenagerFOR ALL TEENS

Marijuana trains the reward system to embrace a mind-altering chemical.Young adults who smoked pot regularly before the age of 16 performed significantly worse on cognitive function tests than those who started smoking in their later teenage years.Because early exposure to marijuana can change the trajectory of brain development, even a few years of delaying use in the teen years is better.

For genetically vulnerable teens, the risk is three times higher

◦ It is true that the relative numbers of teens who smoke pot and develop psychotic symptoms is relatively low; in some studies it’s put at 3 percent.

◦ But the risk then goes up to 10 percent or higher for those teens who are at a genetic risk for psychosis, that is, those who had a relative with a psychotic disease like schizophrenia or bipolar disorder.

What is scientific evidence?How can you use it to protect your family?

Factual, actionable evidence comes from research that is: • PEER REVIEWED• REPLICATED• CLINICALLY TRANSLATED

Sources such as: Pubmed, PLOS, NIMH. NAMI.

Why do I need to know about research?

1) To protect yourself and your family from misleading media reports and misguided popular opinion.

Both reinforce myths and misinterpretations of research into mental illness in general, and childhood mental disorders in particular.

Why do I need to know about research?

2) Because of the often long delay between positive research findings and their entry into mental health clinical practice.

So, even if you can get past your primary care gatekeeper to see a mental health specialist, you may not get evidence-based treatment. Your practitioner simply hasn’t been exposed to or trained in applying these findings.

MYTH FACT There is NO causal link between vaccines and autism, and there never was one.

SOURCE: CDC FAQs on vaccines

Vaccines cause autism.

MYTH FACT

ADHD is a biologic abnormality of the brain, largely genetic and biological, affecting up to 12% of children (under 18 yrs).

SOURCES: “There are 6,000 studies, hundreds of double-blind studies, that establish ADHD is a real disorder; also, abundant research showing it can be managed, in many cases, by using stimulant medication in combination with other treatments.“

Russell Barkley, a professor of psychiatry and neurology at the University of Massachusetts.

ADHD is no more than a subjective fabrication of psychiatrists and drug makers.

The problem with relying on anecdotal evidence alone…."Where were these kids [with ADHD] when I was growing up? …I've never heard of this before."

“Well, these kids were there. They were the class clowns. They were the juvenile delinquents. They were the school dropouts. They were the kids who quit school at 14 or 15 because they weren't doing well.” Russell Barkley,

“To suggest that this is a fraud, that somehow children are being abused by these treatments, is really an outrage, because for these kids, to not get treated is really the greatest abuse and neglect.” ◦ Harold Koplewicz, vice chairman of psychiatry at New York University and Director of NYU Child Study Center; author of It's Nobody's Fault: New Hope and Help for Difficult Children and Their Parents.

Misinterpretation FACTThe only link found between teen use of antidepressants and an increased suicide risk was attributable to cases with an overly high starting dosage – usually prescribed by GPs and internists.

Source: JAMA Intern Med. 2014

Antidepressants significantly increase the risk of teen suicides

Misinterpretation FACT

The (increased) risk over the usual prevalence or population-wide, autism risk level of 1% in the largest study to date (16,000+ Swedish participants) was less than 1% (.06)

Antidepressant use by pregnant women causes autism in children

What is ‘relative risk’?  Watch out for risk’s magnifying glass Whenever you see something tripling – or halving – a risk, take a moment before you let the fear or optimism sink in.

If my risk is tiny, then even tripling or halving it is only going to make a minuscule difference: a half of 0.01% isn’t usually a shift I’d even notice. Whereas if my risk is 20%, tripling or halving could be a very big deal. Unless you know a great deal about the risks in question, you need more information than a relative risk to make any sense out of data.

A rational bottom line for pregnant women with depression…

“You are always going to try to treat them [pregnant women with depression] first with psychotherapy,” she said. “But if they are severely depressed, they are going to need medication.”

◦ Dr. Ariela Frieder, a psychiatrist at Montefiore Medical Center who specializes in treating pregnant and postpartum women

Underreported (good) research news on depression…

1) Psychotherapy works to treat mild to moderate depression

2) Psychotherapy + antidepressants together work best for severe depression

If the mother is depressed and just one other close relative in the family has depression we know the children are going to show up with either anxiety or depression by the time they’re 15 years old.Myrna Weissman, Columbia University & NY Psychiatric Institute

READ LI p. 125

Family mental illness: depressed mothers with depressed children

Some good news…treating the mother helps the children •One third of depressed children of depressed mothers had their symptoms go into remission after their mothers received treatment for depression – without receiving any treatment themselves.

•All children of recovering mothers who themselves did not begin with a diagnosis of depression remained free of psychiatric diagnoses at three months

Family mental illness: maternal depression and addiction…

Depressed women in their 30s and 40s have a 2.6 greater risk for heavy drinking, compared to those without major depression.

Ages 30 to 44, when comorbid disorders are highest, are also a woman's prime childbearing years.

Family mental illness: self-medicationWhich comes first, the addiction or the mental disorder? The National Comorbidity Study (1992) (NCS) showed that when an alcohol disorder accompanied another mental disorder, the alcohol abuse began after the individual was suffering from symptoms of the other mental disorder, usually a year or more after. Most common disorders: anxiety, depression, and for men, conduct disorders.

Family mental illness: using what I learned to heal myself and my sons

• Diagnosing and treating my own lifelong depression. •Accepting that I too have the family disease as relates to alcohol•Identifying my younger son’s depression and anxiety and quickly finding treatment for him.

[Read LI p 125]

Two more lessons: 1) Define your own recovery

People have different definitions for recovery. Mine is doing what it takes to reduce one's worst symptoms and learn to manage the stubbornly-irritating ones that remain.AND sharing what I’ve learned.

 

The longer you wait to seek treatment, the more time it can take for the brain to come back from a diseased state caused by mental illness.

By intervening early, you can usually begin with less onerous treatment, such as parent education and family therapy, and keep childhood mental disorders from becoming adult disorders.

As my sons and I learned, the next best thing to "fixing the mother first" is getting help together.

2) treating earlier is better than waiting too long

Early intervention takes hold… There are now early intervention clinics for psychosis in nearly every state and many countries.

• Alex benefitted by going for treatment at a time (1998) when the concept of "early intervention" for the first symptoms of the psychosis that can lead to schizophrenia had just been introduced into treatment of what is also called early stage SZ.• After three years spent in psychotherapy and taking a brief course of antipsychotic medication, Alex was able to return to school and ultimately complete his education at a prestigious art college.• Early intervention and treatment such as Alex's often depends on practitioners having a full knowledge of the affected person's family mental health history. Without it they are at an enormous disadvantage when they attempt to interpret symptoms and make a diagnosis or a recommendation about treatment. [Read LI 82]

Parents are the best advocates for their own and their family’s mental health.

Parents become advocates by:

◦ Using the intimate knowledge they have of their family members to understand the unique vulnerabilities they face individually and as a family.

◦ Learning about the scientific evidence concerning causes, symptoms, treatments, and prevention of mental illness – and applying these facts to themselves and their loved ones.

◦ Speaking out and taking action on what they know.

GREAT RESOURCE!SOURCE: CHILD MIND STUDY CENTER

10 Steps to Family Mental Health

THE BEST ADVICE I ’VE GOTTEN FROM LEADING PSYCHOLOGICAL RESEARCHERS AND CLINICIANS ABOUT HOW YOU CAN PROTECT YOUR CHILDREN FROM MENTAL DISORDERS.

1) Chart your family mental health history

Include all known or suspected mental disorders and addictions. If relatives baulk at your digging into the family's possibly murky past, point out that it's for the good of your children, and grandchildren.

Use the US Surgeon General's online form for recording and storing your family's mental (and medical) history and make it a shared ongoing family project to maintain. Take a print-out with you to any mental health evaluation and insist that it be a part of your own or the child's diagnostic process.

2) Plan your pregnancies The source of fetal risk may be a disease such as chickenpox, a prescription drug, or a chemical -- including oil-based paints, mercury and certain chemicals in plastics (phthalate and bisphenol A or BPA), used in some toys, cosmetics and water bottles.

Sensitivity is highest during periods of intense brain growth--in the first and second trimesters.

A good web resource for things to avoid is the March of Dimes. If you are currently on antidepressants, speak to a doctor about the relative risks of getting off vs staying on them. Severe depression may raise your child's risk for later disorders more than your medication.

3) Consider paternal risk factors

A man's alcohol intake and drug use is linked with higher miscarriage rates.

Older fathers are associated with higher rates of schizophrenia and autism in their offspring.

As is the case for a mother to be, age, lifestyle and occupational risks should be weighed along with other factors, such as family history, to understand your complete risk profile.

4) Take care of your own mental health needs, first

You may have put off getting a diagnosis but now is the time to make an appointment with a mental health professional and seek treatment if you have symptoms of a common adult mental disorder such as depression, anxiety or addiction.

A bout of postpartum depression affects many new moms, but it can hit a woman with severe depression or bipolar extra hard.

Think of your actions as an act of prevention for your child's mental health. If your child already has similar symptoms, research has shown that by treating the mother, a depressed or anxious child will get better too - without direct treatment.

5) Identify and monitor a child’s possible early symptoms

If there is a lot of any single mental illness (diagnosed or not) present among your relatives, learn about the early signs for that disorder. Some examples include social withdrawal for depression; irritability for depression, anxiety or ADHD.

If you see early signs like these, closely monitor your child's behaviors. If symptoms are present for a month or more keep a daily log to document them.

If the problem behaviors continue or worsen, bring this log to your pediatrician or mental health professional that treats children. If you have a family history of mental illness or suicide, do your best to keep teenagers away from cannabis; it raises the risk of psychosis five-fold in genetically vulnerable adolescents.

6) Normalize feelings, both good and “bad”

As soon as your child begins to recognize and name his own thoughts and feelings and those of others, start an age-appropriate conversation about how our human emotions and minds work. Explain that feelings and thoughts exist on a broad spectrum (compare it to a rainbow).

Within reason (which excludes tantrums or aggression against others), make it clear that unusual thoughts and strong feelings are not right or wrong; more often, they simply represent individual differences.

This "normalization" of differences makes it more likely that your child will confide any future psychological problems to you and be less inclined to stigmatize others.

7) Have zero tolerance for bullying Whether your child is the victim or the bully, do whatever it takes to stop it. This is not a "wait and see" option.

Even if your child begs you not to make a fuss, understand that the potential psychological damage (including suicide) for him or her if the abuse continues is far worse than any temporary embarrassment.

Pay special attention to warning signs that your child may be the victim of cyber-bullying.

8) Make self-esteem a family priority Self-esteem has gotten a bad rap because it's been confused with having an outsized and incorrect sense of one's positive qualities and abilities. Self-esteem in a child comes from parents who model empathy, honor individuality and reward real effort, not false achievement.

True self-esteem is the basis of emotional resiliency, which gets severely tested at several points in childhood - especially around early parent-child separations and the tween years.

As a resilience building strategy, bring back family dinners as many nights as possible, divide up chores and use the time to communicate and enjoy each other just as you are.

9) Build up your support network Motherhood can be lonely. Social isolation isn't good for mother or child. Before giving birth, take stock of who you can call on for emotional and practical support among physically close-by friends, neighbors and family.

Then check out any of the hundreds of web-based communities of new mothers from whom you can count on finding a friendly ear and a good laugh at virtually any time of the day or night. Find the right fit for you. 

10) Become a community mental health advocate

CONTACT INFO

vcostellosf@gmail.com

WEBSITE

www.mentalhealthmomblog.com

THANK YOU!

To PPAL and everyone here today.