A 2015 presentation by Victoria Costello, science journalist, author and mental health advocate, demonstrating how lay advocates can access and incorporate scientific evidence into their family and community advocacy for mental health for all. References Victoria Costello's memoir, A Lethal Inheritance, A Mother Uncovers the Science Behind Three Generations of Mental Illness, published by Prometheus in 2012. Presented on May 29, 2015 at the annual meeting of Parent Professional Advocacy League in MA. Website: http://www.mentalhealthmomblog.com

1. Victoria Costello
Parent advocate, science journalist, author
Mental Health Advocacy:
Empowering Lived Experience
with Evidence

2. MY FAMILY
STORY

3. 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.

4. 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.

5. 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”.

6. 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

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

8. 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

9. 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!

10. “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 poemand 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

11. 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.

12. BUT how does a child go from
THIS … TO THIS…

13. 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?

14. 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.

15. 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."

16. 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.”

17. 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.”

18. 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.

19. 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

20. 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

21. 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

22. 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.

23. 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

24. The Role of Family History
Not nature vs. nurture, but nature via nurture.

25. A family tree
‘pedigree’ for my
family

26. 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

27. 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

28. 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.

29. 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]

30. 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.

31. Links between mental illness and suicide
WHO 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.)

32. Which disorder leads to most suicides?

33. The Cannabis Connection: why pot is (still) NOT ok for
your teenager
FOR 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.

34. 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.

35. 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.

36. 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.

37. 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.

38. MYTH FACT
There is NO causal link between
vaccines and autism, and there never
was one.
SOURCE: CDC FAQs on vaccines
Vaccines
cause
autism.

39. 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.

40. 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.

41. Misinterpretation FACT
The 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

42. 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

43. 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.

44. 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

45. Underreported (good) research news on depression…
1) Psychotherapy works to treat
mild to moderate depression
2) Psychotherapy +
antidepressants together work
best for severe depression

46. 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
Family mental illness: depressed mothers with
depressed children

47. 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

48. 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.

49. Family mental illness: self-medication
Which 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.

50. 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]

51. 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.

52. 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

53. 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]

54. 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.

55. GREAT
RESOURCE!
SOURCE: CHILD MIND
STUDY CENTER

56. 10 Steps to
Family Mental Health
THE BEST ADVICE I’VE GOTTEN FROM LEADING PSYCHOLOGICAL RESEARCHE RS
AND CLINICIANS ABOUT HOW YOU CAN PROTECT YOUR CHILDREN FROM
MENTAL DISORDERS.

57. 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.

58. 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.

59. 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.

60. 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.

61. 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.

62. 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.

63. 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.

64. 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.

65. 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.

66. 10) Become a community mental health advocate

67. CONTACT INFO
vcostellosf@gmail.com
WEBSITE
www.mentalhealthmomblog.com

68. THANK YOU!
To PPAL and everyone here today.